tag:blogger.com,1999:blog-13104174894435817262024-02-09T01:08:37.557+13:00Sid's multiple myeloma journeyI was diagnosed with multiple myeloma Stage 3 IgG Kappa in June 2001.
This is a retrospective blog of my multiple myeloma journey created in January 2009 compiled from diaries I have kept and from my memory. <br>It is a record of my journey that may be of help to those on their myeloma journey and to others beginning theirs.<br> Multiple myeloma: my illness, my body, my treatment.Sidhttp://www.blogger.com/profile/11123133496860716719noreply@blogger.comBlogger110125tag:blogger.com,1999:blog-1310417489443581726.post-20064582255833386632011-09-29T16:36:00.001+13:002011-09-29T16:37:42.546+13:00Final PostingSid passed away on the 16th September 2011 from the effects of myeloma. He was proud to carry the burden of it.Sidhttp://www.blogger.com/profile/11123133496860716719noreply@blogger.com0tag:blogger.com,1999:blog-1310417489443581726.post-67882657320137671262010-09-17T00:18:00.002+12:002010-09-17T00:25:19.117+12:00Rev-lite trial: end of cycle 5.I was at daystay on Tuesday for my monthly Rev-lite trial consultation and Aredia.<br />All is well, all is stable, and test results remain in the normal zone, an uneventful medical month.<br />Cholesterol has returned to normal as well thanks to the diabetic diet.<br />The glucose reading is excellent considering what it was at diabetes diagnose. Thanks to the diet my fasting HbA1c % = 6.6<br />Perhaps I can now loosen up a bit and have some occasional treats.<br />I did have a pie on Fathers day, the local Green Bay Bakery award winning chicken and vegetable pie. I sniffed it, slowly ate it and made it last.<br />That ends cycle 5, now onto cycle 6.<br />I am now on my steroid dexamethasone 4 days a cycle which has made a big difference to quality of life. That's 23 days without it. Sleep has returned to normal except for those 4 days, the real Sid has returned. That doesn't stop me from talking to drivers who take the space between me and the next car or telling the footy referees of their mistakes.<br />Myeloma for me now is a series of treatment, remission, relapse etc though I hope the latest treatment is an extended remission. We use the theory when in remission do it now rather than later.<br />Therefore we are having a holiday in November, a 10 day coach tour of the bottom half of the South Island. We have previously seen the top half now we take in the remainder. Being a coach tour I can sit back to be taken every where and look out the window at the scenic wonders. We intend to take a scenic flight over the Southern Alps, Mt Cook and the glaciers as a big memory.<br />I am returning to work at Beca part time on the 20th, 3 days a week, 4 hours a day. There I am looking forward to the people contact and more brain involvement. More time depends on how I cope and work load availability, no worries about that.Sidhttp://www.blogger.com/profile/11123133496860716719noreply@blogger.com6tag:blogger.com,1999:blog-1310417489443581726.post-56780837834444469152010-09-06T19:16:00.002+12:002010-09-06T19:21:47.850+12:00Back in Blogsville and an earthquake.<strong>Back in Blogsville.</strong><br />Not many postings from me recently mainly due to the impact of being diagnosed a diabetic. Diabetes has taken the wind out of my sails.<br />I am comfortable with myeloma, had it for over 9 years, been through several treatment/remission/relapse phases, keep up to date with myeloma news and now it seems Revlimid and dexamethasone have lowered my IgG levels down into the normal range.<br />Diabetes is an unwelcome invader into my body, just like myeloma was. Eight weeks on I am coping much better, accepted it and moving on to find my new normal.<br />Let the postings resume.<br /><br /><strong>Earthquake.</strong><br />Three days ago there was a major earthquake in New Zealand (7.1) causing considerable damage to a major south island city, Christchurch. I live about 1050 km (655 miles) away in the north island. All is well here.<br />Buildings in NZ these days are built to strict earthquake codes and seem to have survived major damage. Older buildings and homes seem to have suffered considerable damage, many are being demolished.<br />There was no loss of life mainly due to the quake occurring at 4.30am.Sidhttp://www.blogger.com/profile/11123133496860716719noreply@blogger.com2tag:blogger.com,1999:blog-1310417489443581726.post-9381010381424324572010-08-18T23:57:00.011+12:002010-08-19T00:40:54.411+12:00Rev-lite trial: end of cycle 4.Tuesday 17th August 2010 I completed my Rev-lite clinical trial cycle 4 (28 days) for myeloma. Trial protocol states that after 4 cycles the status of my disease will be reassessed. If my disease has become worse the trial will stop. If my disease has shown improvement I remain on the trial.<br /><span style="color:#990000;"><strong>My disease has improved allowing me to remain on the trial.</strong></span><br />From cycle 5 onwards the Lenalidomide dosage remains at 15mg for 21 days then 7 days free. Dexamethasone dosage remains at 20mg but only given for the first 4 days. For cycles 1 to 4 dexamethasone was 4 days on 4 days off for 21 days; the reduction is welcomed. A daily Aspirin continues as before.<br />I can now remain on this trial indefinitely or until it officially ends. Reasons for me stopping the trial is complications from side effects or if there is a return of myeloma.<br />A skeletal x-ray has been scheduled for 2 months time.<br />This is very heartening news for me. After 9 years since myeloma diagnose I am virtually myeloma free again heading back to normal all thanks to Lenalidomide. For how long, can't say, that's the nature of myeloma and in the hands of God. I feel humble that I received the opportunity to participate in the trial. There are others who Lenalidomide has not worked, my heart goes out to them.<br />I am convinced that the lower dosage of Lenalidomide and dexamethasone is still effective and does reduce the side effects.<br /><br /><strong>Cycle 4 summary:</strong><br />There were no significant problems during cycle 4 other than a minor head cold and later coughing phlegm for 3 days (it is winter in NZ). During week 3 of the previous 3 cycles there was a deteriation of the mouth and bottom lip. This was not present in the mouth this time, only a minor feeling on the lip.<br />Bowels were generally normal, Laxol and Kiwi fruit used sometimes for constipation during dexo days.<br />There was only one afternoon of fatigue this cycle, though there were occasional pockets of tiredness in the late afternoon. My strength is returning after the diabetes problem allowing me to walk 30 to 40 minutes a day.<br />I did get some minor cramp in my feet on days 15 and 16. First time for a while even though I am taking vitamin E for cramp.<br />Starting in the 4th week the skin at my protaphane (insulin) needle sites became bruised or blood spots appeared. This was thought to be related to my lower platelets and the Aspirin which thins the blood. We are currently monitoring this.<br />There are problems with dexamethasone side effects. Refer to the dexamethasone heading below.<br />Overall there was an improvement on the first 3 cycles.<br /><br /><strong>Test results:</strong><br />Today’s results are not yet available. The test results from 4 weeks ago indicate that I continue to respond well to the new treatment.<br />My IgG at beginning of the trial (28th April) was 32.5 g/L (USA 3250 mg/dl) last month (20th July) 10.7 (USA 1070). Normal range is 7 to 16.<br />Platelets: 306 now 172.<br />HB: 115 now 126<br />RBC: 4.13 now 4.3<br />WBC 6.7 now 4.8<br /><br /><strong>Diabetes:</strong><br />Dexamethasone increases the blood sugars. During cycle 4 on dexo days I controlled my blood/sugar levels by eating less carbohydrates and walking for regular exercise. The other option of increasing my insulin did not eventuate.<br />To help with food shopping, cooking and eating I have created a spreadsheet which lists food item, protein, carbohydrates and sugar, a good guide.<br /><br /><strong>Weight loss:</strong><br />During cycle 4 my weight remained constant at 65 kg (143 lbs). With my diabetes food recommendations now in place I don’t expect to regain much weight at all.<br /><br /><strong>Dexamethasone:</strong><br />The accumulative effect of dexamethasone over 4 cycles and earlier in the year combined with cyclophosphomide has accentuated some side effects.<br />Sleep problems during dexamethasone days have become an issue, the wide awake until early morning is there. I am reluctant to take my sedative (Zopiclone) as I get withdrawl symptoms when I stop. That is sleep for 30 minutes then wake with waves of restlessness in my arms and torso for about 3 hours. I have previously used morphine based pain relief some times in high dosages: Kaponal, m-elson, and recently Oxycontin. Perhaps the Zopiclone triggers some residual Morphine still in my body creating a craving. That’s my theory.<br />I can be aggressive and loud in my speech, very opinionated, don’t hold back. This was a big problem during the first 2 weeks after retuning from hospital with diabetes. I was in denial and angry, not the normal me. Now that I have accepted the diabetes the anger has reduced and we have put in place some systems to down size my speech problems. There are other ways I can do stress release.<br />I am more emotional this cycle, the tears can flow freely out of nowhere, this maybe a combination of the dexamethasone and the diabetes trauma.<br />Link: <a href="http://supersidnz.blogspot.com/2009/06/dexamethasone-for-myeloma-side-effects.html" target="_blank"><span style="color:#cc0000;">Dexamethasone for myeloma.</span></a><br /><br /><strong>Peripheral neuropathy:</strong><br />During cycle 4 there has again been a very small increase in my peripheral neuropathy in my feet, mainly an increase in the numbness of the soles. It is present in my left hand, but not the right hand. Peripheral neuropathy does reduce during the 4th week when there is no Lenalidomide. Keeping my feet warm, using vitamins and Alpha-lipoic-acid helps reduce the peripheral neuropathy symptoms.<br /><br /><strong>General:</strong><br />The diabetes was a big blow to me, I have now accepted it. Extra work now includes a change in eating habits, learning the nutritional values of food, avoiding sugar, keeping a daily food diary, the three times a day finger pricks for blood/sugar monitoring, two times a day insulin injections and gaining diabetes knowledge. There will be a posting soon on the diabetes impact on my myeloma and what I am doing to keep it simple.<br /><br /><strong>Links:</strong> (Links open in a new window).<br />Rev-lite clinical trial. <a href="http://supersidnz.blogspot.com/2010/05/im-on-rev-lite-clinical-trial.html" target="_blank"><span style="color:#ff0000;">Commenced 28 April 2010.</span></a><br />Rev-lite clinical trial: <a href="http://supersidnz.blogspot.com/2010/05/rev-lite-trial-end-of-cycle-1.html" target="_blank"><span style="color:#ff0000;">end of cycle 1.</span></a><br />Rev-lite clinical trial: <a href="http://supersidnz.blogspot.com/2010/06/rev-lite-trial-cycle-2-day-18.html" target="_blank"><span style="color:#ff0000;">cycle 2, day 18.</span></a><br />Rev-lite clinical trial: <a href="http://supersidnz.blogspot.com/2010/06/rev-lite-trial-end-of-cycle-2.html" target="_blank"><span style="color:#ff0000;">end of cycle 2.</span> </a><br />Rev-lite clinical trial:<a href="http://supersidnz.blogspot.com/2010/07/rev-lite-trial-end-of-cycle-3.html" target="_blank"> <span style="color:#ff0000;">end of cycle 3.</span></a>Sidhttp://www.blogger.com/profile/11123133496860716719noreply@blogger.com4tag:blogger.com,1999:blog-1310417489443581726.post-73126992890394774212010-07-30T21:41:00.007+12:002010-07-30T22:06:42.814+12:00Rev-lite trial: end of cycle 3.Tuesday 20th July 2010 I completed my Rev-lite clinical trial cycle (28 days) for myeloma.<br /><strong>Test results:</strong><br />The test results available indicate that I continue to respond well to the new treatment. Results from other tests that take longer to complete are not yet available. My myeloma results IgG, globulin, total protein etc continue to head downwards. The drop in my bloods (platelets, neutrophils, haemoglobin, red counts etc) at the end of 3 weeks of Lenalidomide puts them at the bottom of the "normal" range as expected. It is noted that Anaemia is present.<br /><strong>Diabetes:</strong><br />During cycle 3 I had suffered Candida which in combination with long term dexamethasone use resulted in my blood/sugar levels sky rocketing giving me diabetes type 2.<br />Link: <a href="http://supersidnz.blogspot.com/2010/07/who-let-dexo-dogs-out.html" target="_blank"><span style="color:#ff0000;">Who let the dexo dogs out?</span></a><br />Dexamethasone increases the blood sugars. The final dexo days (17 to 20) coincided with my hospitalisation so the dexo was stopped for those four days. During cycle 4 on dexo days I control my blood/sugar levels by eating less carbohydrates and regular exercise which for me is walking. If this does not work I then will be increasing my twice daily insulin dosage.<br /><strong>Weight loss:</strong><br />During this month I lost 7kg (15lbs) due to the Candida and diabetes, so far 1kg has gone back on. With my diabetes food recommendations now in place I don’t expect to regain much weight at all.<br /><strong>Pain relief:</strong><br />My pain relief of Oxycontin slow release capsules has been stopped. Any pain relief will be controlled by paracetamol. There were no side effects during Oxycontin reduction but some side effect experiences after stopping completely. Mainly difficulty in getting to sleep, waves of restlessness in the arms. This reduced over 4 days and is no longer present.<br /><strong>Peripheral neuropathy:</strong><br />During cycle 3 there has been a very small increase in my peripheral neuropathy in my feet, mainly a numbness of the soles. This does reduce during the 4th week of no Lenalidomide. Keeping my feet warm, using vitamins and Alpha-lipoic -acid helps reduce the peripheral neuropathy symptoms.<br /><strong>General:</strong><br />The diabetes was a big blow to me, I have now accepted it. Extra work now includes a change in eating habits, learning the nutritional values of food, no sugar, keeping a daily food diary, the three times a day finger pricks for blood/sugar monitoring, two times a day insulin injections and gaining diabetes knowledge. There will be a posting soon on the diabetes impact on my myeloma and what I am doing to keep it simple.<br />Cycle 4 has commenced including the scheduled dexo.<br /><br /><strong>Links:</strong> (Links open in a new window).<br />Rev-lite clinical trial. <a href="http://supersidnz.blogspot.com/2010/05/im-on-rev-lite-clinical-trial.html" target="_blank"><span style="color:#ff0000;">Commenced 28 April 2010.</span></a><br />Rev-lite clinical trial: <a href="http://supersidnz.blogspot.com/2010/05/rev-lite-trial-end-of-cycle-1.html" target="_blank"><span style="color:#ff0000;">end of cycle 1.</span></a><br />Rev-lite clinical trial: <a href="http://supersidnz.blogspot.com/2010/06/rev-lite-trial-cycle-2-day-18.html" target="_blank"><span style="color:#ff0000;">cycle 2, day 18</span>.</a><br />Rev-lite clinical trial: <a href="http://supersidnz.blogspot.com/2010/06/rev-lite-trial-end-of-cycle-2.html" target="_blank"><span style="color:#ff0000;">end of cycle 2</span>.</a>Sidhttp://www.blogger.com/profile/11123133496860716719noreply@blogger.com1tag:blogger.com,1999:blog-1310417489443581726.post-60199058364530049462010-07-22T01:06:00.005+12:002010-07-22T01:20:46.143+12:00Who let the dexo dogs out?Who let the dexo dogs out; they mauled me and left me with diabetes.<br />My long term use of dexamethasone was a big contributor to my diabetes; it is a dexamethasone side effect.<br />We had been monitoring my glucose levels; there was a gradual increase but not too alarming. I do have a family history of diabetes.<br />Over the last 3 weeks I was experiencing increasing fatigue and tiredness. As I am on a clinical trial I kept the hospital informed. My mouth developed what looked like thrush, white patches on the tongue and mouth so off the GP who diagnosed oral Candida. This was treated with lozogenes. I was to return in 2 days.<br /><strong>Candida</strong> appears on the lining of your mouth and tongue. A compromised immune system increases the risk. An underlying condition such as diabetes may be a cause.<br />My condition quickly progressed to increased fatigue, dizziness, light headedness, brain fog, excessive thirst and increased urinary frequency (dibetes symptoms). Next morning I could barely function, off to the hospital where tests showed I was badly dehydrated and had a very high glucose reading. Diagnose was diabetes type 2 resulting in 5 days in hospital to control it. During the 3 weeks I lost 9 kg (20 lbs), need to put back on half of that.<br />When I was discharged I came home with a bad attitude, I wanted to leave my diabetes at the hospital. I did not want the 3 times daily blood glucose monitoring, the twice daily insulin injections, the constant thinking about what I can or can’t eat and all the new knowledge I need to live with diabetes. It was an unwanted intrusion into my life with myeloma.<br />I am living with myeloma, learnt a lot about it and was coping well. The Rev-lite trial has lowered my IgG levels, bone pain has gone, Lenalidomide and dexamethasone is working. One more cycle would get me to the next stage, less dexamethasone.<br />There is no escape, my attitude had to change and slowly it has. I have put all my diabetes information, monitoring meter, insulin pen, and needles into a cardboard box, a one stop shop. That’s the same in my head space; the diabetes is in a box not interfering with my myeloma.<br /><br />Links (open in new page):<br /><a href="http://www.mayoclinic.com/health/oral-thrush/DS00408/DSECTION=risk-factors" target="_blank"><span style="color:#ff0000;">Oral Candina</span></a><br /><a href="http://supersidnz.blogspot.com/search/label/Clinical%20trial" target="'_blank"><span style="color:#ff0000;">Clinical trial</span></a>Sidhttp://www.blogger.com/profile/11123133496860716719noreply@blogger.com4tag:blogger.com,1999:blog-1310417489443581726.post-90802740468640858402010-07-01T22:54:00.011+12:002010-07-01T23:26:58.949+12:00Lytic lesion right femur update 3<strong>Update right leg:<br /></strong>Update 3 on lytic lesion right femur from myeloma.<br />This week Tuesday 27th July 2010 I had an appointment with orthopedics to discuss bone progress at the lytic lesion on my right femur and to x-ray the leg<br />The rod and pins are all stable.<br />My treatment for myeloma (Rev-lite trial) is at cycle 3, end of week 1. I also have monthly infusion of Aredia.<br />X-ray showed the myeloma lytic lesion has not increased; it seems to have decreased and there is evidence of bone healing. I did not expect the lesion to reduce the day treatment started, the evidence is it is now working, starting to look like a real bone again. Because of good progress we will not have any radiation at this time. Radiation would have interfered with the trial protocol and the trial may have had to stop.<br />There is no pain in the right leg, I have more movement and strength is returning.<br /><br /><strong>Left leg:<br /></strong>My left leg has minor myeloma deposits in the femur identified on previous x-ray. We are hoping the Rev-lite trial of Lenalidomide and dexamethasone will treat that.<br />Last Sunday I started to feel pain in my left femur about an hour after a long walk. This pain was similar to the lesion pain I originally felt in my right femur. Next day I had the right leg x-rayed and compared with the x-ray of 2 months ago. There was no change between x-rays, no fine cracks or fractures visible. It was difficult to determine the cause of pain so decision was to increase pain relief, stay off the leg for 2 to 3 days and monitor. So far the pain is reducing; today the leg is feeling better. The cause may be muscular or nerves.<br /><br /><strong>Links:</strong> [Link opens in a new page]<br />Saturday 3rd April 2010: <a href="http://supersidnz.blogspot.com/2010/04/lytic-lesion-right-femur.html" target="_blank"><span style="color:#ff0000;">Lytic lesion right femur</span></a><br />Thursday 8th April 2010: <a href="http://supersidnz.blogspot.com/2010/04/lytic-lesion-right-femur-update.html" target="_blank"><span style="color:#ff0000;">Lytic lesion right femur update<br /></span></a>Sunday 22nd May 2010: <a href="http://supersidnz.blogspot.com/2010/05/lytic-lesion-right-femur-update-2.html" target="_blank"><span style="color:#ff0000;">Lytic lesion right femur update 2<br /></span></a>Tuesday 22nd June 2010: <u><a href="http://supersidnz.blogspot.com/2010/06/rev-lite-trial-end-of-cycle-2.html" target="_blank"><span style="color:#ff0000;">Rev</span></a><span style="color:#ff0000;">-lite trial end of cycle 2</span></u>Sidhttp://www.blogger.com/profile/11123133496860716719noreply@blogger.com0tag:blogger.com,1999:blog-1310417489443581726.post-65324146797646954322010-06-22T23:43:00.014+12:002010-06-23T00:51:07.943+12:00Rev-lite trial: end of cycle 2.Tuesday 22nd June 2010 I completed my Rev-lite clinical trial cycle 2 (28 days) for myeloma.<br /><strong>Test results:</strong><br />The test results available indicate that I am responding well to the new treatment.<br />Results from other tests that take longer to complete are not yet available. My myeloma results IgG, globulin, total protein etc continue to head downwards. The drop in my bloods (platelets, neutrophils, haemoglobin, red counts etc) at the end of 3 weeks of Lenalidomide puts them at the bottom of the "normal" range as expected. It is noted that Anaemia is present.<br /><strong>Side effects:</strong><br />I have had no big reaction or side effects. This cycle 2 has been better than cycle 1 with minimal fatigue, not so sleepy, no rash, less dry skin. In cycle 1 my mouth started to feel “furry” and the bottom lip became tender about day 17. A similar thing occurred in cycle 2 but not as bad.<br />Dexamethasone has given me an increased appetite on some of the days I have it resulting in a 1kg (2.2 lbs) weight increase. There has been some sleep disturbance, nothing extreme enough for a sedative.<br /><strong>Myeloma:</strong><br />My myeloma bone pain has nearly disappeared indicating to me that the treatment is working. I can now sleep on my sides, roll over in bed and see where I am going when I reverse the car. During the next cycle I will be eliminating the pain relief. That will help identify any myeloma that is remaining.<br /><strong>Right femur, Lytic lesion and fracture:</strong><br />The fracture in the lytic lesion of my right femur is healing.<br />I am now walking with no crutch, walking 30 minutes regularly for exercise and walking stairs.<br />All my support equipment has been returned except for the crutch. I only use that if people are around me, there are stairs to climb or if the ground is unstable.<br />Next Tuesday I have an appointment with orthopedics to x-ray and sign off the leg.<br /><strong>Pain relief:</strong><br />My pain relief of Oxycontin slow release capsules has been reduced during cycle 2 to 20mg morning, 10 mg evening. During cycle 3 I hope to stop the Oxycontin. Any pain relief will then be paracetamol.<br /><strong>Peripheral neuropathy:</strong><br />I have some peripheral neuropathy from previous chemotherapy and thalidomide treatment. To reduce the symptoms I take alpha-lipoic-acid capsules and vitamin B.<br />During cycle 2 there has been a small increase in my peripheral neuropathy in my feet, mainly a numbness of the feet especially the soles. In week 3 I began to experience foot cramps in the morning starting about an hour before waking. An evening drink of tonic water containing quinine was recommended. The taste was Yuk so I added orange juice. Good advice as the drink eliminated the cramp.<br />As a test I missed the drink one evening and yes, the cramp was there the next morning.<br />I have now added some magnesium vitamins as well.<br /><strong>Constipation:</strong><br />I have some constipation originating from Lenalidomide, dexamethasone and Oxycontin. To control constipation I use Laxsol laxative at morning and evening meals varying the dose as required taking more during dexamethasone days or if there is no motion for 2 days. During the fourth week of cycle 2 I used no Laxol.<br /><strong>General:</strong><br />We have moved from the single beds downstairs to the main bedroom upstairs.<br />I am now driving the car.<br />Myra has observed that the hair loss at the two previous radiation spots for soft tissue plasmacytoma on my skull (Jan 2010) is starting to regrow. This is a pleasant surprise.<br />I am aiming for a return to work, initially 4 hours a day, after the right leg has been x-rayed and orthopedics say go.<br />Rev-lite clinical trial cycle 3 commences Wednesday 23rd June 2010.<br />The goal now is to continue the treatment through to end of cycle 4 when we redo all the initial tests, bone marrow biopsy, x-rays etc again to compare the beginning of treatment with the end of 4 treatment cycles.<br />If there is no change I get dropped off the trial. If there is improvement I can stay on indefinitely. So far there has been improvement.<br /><br /><strong>Links:</strong> (Links open in a new window).<br /><a href="http://supersidnz.blogspot.com/2010/05/im-on-rev-lite-clinical-trial.html" target="_blank"><span style="color:#ff0000;">Rev-lite clinical trial.</span></a> Commenced 28 April 2010.<br /><a href="http://supersidnz.blogspot.com/2010/05/rev-lite-trial-end-of-cycle-1.html" target="_blank"><span style="color:#ff0000;">Rev-lite trial: end of cycle 1.</span></a><br /><a href="http://supersidnz.blogspot.com/2010/06/rev-lite-trial-cycle-2-day-18.html" target="_blank"><span style="color:#ff0000;">Rev-lite trial: cycle 2, day 18</span></a>Sidhttp://www.blogger.com/profile/11123133496860716719noreply@blogger.com6tag:blogger.com,1999:blog-1310417489443581726.post-14386927094443398162010-06-12T17:25:00.006+12:002010-06-12T17:33:15.777+12:00Rev-lite trial: cycle 2, day 18.My cycle 2 of Rev-lite trial is at day 18 with some good achievements in the last 2 weeks.<br />There have been no problems with the trial treatment of lenalidomide and dexamethasone, less fatigue, sleeping well with the occasional extra nap when tired.<br />First achievement is with my fractured right femur where I have moved from using the big walker for support to using one crutch to using no crutch. I can now bear weight on the leg and only use the crutch in public to protect myself. A 30 minute walk each day is now a regular event.<br />Being able to walk means I can now drive the car which gives me more independence.<br />My main problem in showering has been fear of falling. This was overcome once I was able to bear more weight on the leg giving me confidence to shower and dry myself.<br />My pain relief has been reduced again, most myeloma bone pain has gone allowing me to spend time sleeping on my sides rather than only my back. To roll over from side to side in bed is bliss.<br />The big achievement is being able walk the stairs at home. Yesterday we moved from the single beds downstairs back to the master bedroom upstairs and into our Queen bed. The bed upstairs has a Woolrest woollen underlay between the mattress and bottom sheet. I missed the warmth it gives. Waking overnight to turn over I could feel warmer especially where my body was in contact with the underlay compared to no underlay. Best of all was sleeping with Myra next to me again.<br />Next achievement will be to maintain my Rev-lite trial progress, continue regaining strength and fitness and a return to work part time.<br />As I get better I am thinking less of myeloma, illness and myself. Now it is other things as well, signs of getting back to normal.Sidhttp://www.blogger.com/profile/11123133496860716719noreply@blogger.com4tag:blogger.com,1999:blog-1310417489443581726.post-19943170937835577032010-06-04T20:48:00.003+12:002010-06-04T20:53:06.565+12:00The Pine cone manDuring myeloma relapse 1 recovery (2007) from myeloma treatment I had to devise ways to regain my fitness and strength. <br />About 3 blocks from home is a very large park with walkways, trees and seats. My initial goal was to walk to the park and return.<br />That was accomplished fairly quickly. Soon I was adding walking in the park extending the walk as fatigue reduced and I became fitter.<br />In the park are a large number of pine trees which shed pine cones good for home fire burning.<br />Ah ha I thought, there is another fitness idea.<br />My left humerus had just been rodded due to a plasmacytoma destroying the bone at mid shaft. The arm and shoulder needed strengthening. On my park walks I would now take an eco bag to fill with pine cones. I used the left arm to carry the bag flexing the arm along with other exercises as I walked along. Over time it all became stronger.<br />Then Myra dropped a bomb shell. She said, “We use electricity for heating. The pine cones will have to go.” After negotiations with her (I won) it was decided after drying out I would store the pine cones in rubbish sacks and place outside and cover with a rain proof cover ready to give to those who needed them over winter.<br />A bag full of dry pine cones on a cold, wet winter’s night is a welcome surprise.<br />I still continue collecting pine cones on my walks and have found some more parks with pine trees that I drive to. My two grandchildren have become expert pine tree finders.<br />Best time for collecting pine cones is after strong winds or a storm.Sidhttp://www.blogger.com/profile/11123133496860716719noreply@blogger.com2tag:blogger.com,1999:blog-1310417489443581726.post-86563386775536322572010-06-01T16:55:00.008+12:002010-06-01T17:13:45.637+12:00It's been two tough monthsApril/May 2010 have been 2 tough months for me in my myeloma journey.<br />Myeloma returned back to me last year with a relapse. Treatment failed to put me into a plateau stage, my hopes lay in new treatment available in a clinical trial.<br />Qualifying for the trial became the easy part, getting through 2 setbacks to commence the trial was more of a challenge. My trial started with one day to spare.<br />May bought with it the passing on of 4 myeloma friends, 2 bloggers and 2 local myeloma friends. There may have been more bloggers while I was in hospital.<br />One myeloma friend in particular left me grieving deeply. A 6 year myeloma friendship is difficult to end.<br /><br />All is not lost, it is now 9 years since my initial diagnose with prognosis at that time of 3 to 5 years. My positive attitude, pro-active stance, interest in gaining myeloma knowledge and being willing to fight for myself remain. I will never give up. The love and support from my wife Myra has been huge, could not have got to where I am with out it.<br />With myeloma being a series of treatment and plateau I have always tried to get back to “normal” after treatment as soon as possible, living a normal life with myeloma pushed into the background.<br />There are now new generation treatments not previously available to me, combinations of old and new treatments and stem cell transplants giving us longer plateau periods along with trials for more new treatments underway now.<br />New treatments not available to me in 2001 include Thalidomide (Thalomid), Bortezomib (Valcade) and Lenalidomide (Revlimid).<br />Unfortunately Bortezomib and Lenalidomide are still not available in New Zealand through our public health funding service Pharmac.<br />Support for frontline treatment, relapsed disease, clinical trials and supportive care is far more advanced now.<br />The future looks promising, the search for a cure continues.<br /><br />Since beginning blogging 18 months ago I have found a new source of help and inspiration, an international family of myeloma support on the internet. To all you folks who read blogs, comment or email to myself and other bloggers a very big thank you.<br /><br />Links:<br /><a href="http://supersidnz.blogspot.com/search/label/Clinical%20trial" target="_blank"><span style="color:#ff0000;">Revlite clinical trial</span></a><span style="color:#ff0000;"><br /></span><a href="http://supersidnz.blogspot.com/search/label/Death" target="'_blank"><span style="color:#ff0000;">Coping with death of a myeloma friend</span></a><br /><a href="http://www.myelomabeacon.com/resources/2008/10/15/treatment/" target="'_blank"><span style="color:#ff0000;">Treatment example</span></a><br /><a href="http://supersidnz.blogspot.com/search/label/Pharmac" target="'_blank"><span style="color:#ff0000;">Pharmac</span></a>Sidhttp://www.blogger.com/profile/11123133496860716719noreply@blogger.com3tag:blogger.com,1999:blog-1310417489443581726.post-24263127302603569862010-05-27T00:15:00.019+12:002010-05-27T01:08:09.347+12:00Rev-lite trial: end of cycle 1.Tuesday 25th May 2010 I completed my Rev-lite trial cycle 1 (28 days).<br />It was good news, the test results indicate that I am responding well to the new treatment. Because of the positive results I now start cycle 2 which again is 28 days.<br />Link: <a href="http://supersidnz.blogspot.com/2010/05/im-on-rev-lite-clinical-trial.html" target="'_blank"><span style="color:#ff0000;">Rev-lite clinical trial.</span></a> Commenced 28 April 2010. (Opens in a new window)<br /><strong>Test results:<br /></strong>IgG, globulin, total protein etc are all heading downwards. The drop in my bloods (platelets, neutrophils, haemoglobin, red counts etc) during the 3 weeks of Lenalidomide still puts them within the "normal" range.<br /><strong>Side effects:</strong><br />I have had no big reaction or side effects.<br />There has been fatigue in the afternoon and some tiredness. Some mornings I have a powernap of 20 to 30 minutes which sharpens me up. If I have a fatigue rest I usually sleep and/or doze for 1 to 2 hours in the afternoon.<br />There has been some dry skin so we split the body into 3; arms, torso and legs, moisturising one part daily giving total body moisturising of 3 times a week. Face, feet and top of hands seem to be the worst.<br />Day 9 Myra noticed a rash appearing in two spots on my back middle left, not itchy. We contacted the trial nurse who said to monitor. By the next day the rash had reduced disappearing on day 11. We think it was a heat rash.<br />Day 15 my mouth started to feel “furry” and the bottom lip became tender. My doctor talked me through saline solution, mouthwash and regular teeth cleaning which has helped. I have always used lip balm, just had to increase the use.<br />Dexamethasone gave me hiccups during the first few days (1 to 4) usually during and after food. No hiccups after the second or third lot of dexamethasone days 9 to 12 and 17 to 20. Sleep was good with only a couple of days of dexamethasone sleep disturbance.<br /><strong>Myeloma:<br /></strong>The 3 soft tissue plasmacytoma on my skull have reduced about 70% in 1 cycle. (70% that’s incredible, way to go Sid, calm down, calm down.) All my myeloma friends know the feeling!<br />At day 1 I had bone pain at my sternum extending to my left side. Coughing was painful. That pain has reduced.<br />I still have rib pain middle back both sides, left side worse and general back pain, reducing just a little, still work in progress.<br /><strong>Constipation:</strong><br />I have some constipation originating from Lenalidomide, dexamethasone and Oxycontin. To control constipation I use Laxsol laxative at morning and evening meals varying the dose as required taking more during dexamethasone days or if there is no motion for 2 days.<br />Myra makes sure my meals include plenty of fruit and vegetables, drink 2 Litres of fluid a day and eat Kiwifruit (Kiwi gold).<br />I take the constipation seriously and record my Laxsol and motions in my diary. The aim is one motion a day.<br /><strong>Right femur, Lytic lesion and fracture:<br /></strong>My leg continues to improve.<br />A bone fracture usually takes about 6 weeks to heal. It is 5 weeks since fracture so I can now use the leg more.<br />My new goal now is to be "walking" with one walking stick then move to walking normal.<br />Currently I am walking with the big walker so the new goal is achievable.<br />The other goal is to drive the car but first I have to walk.<br />One fear I had with my right leg was cramp from the Lenalidomide. I take a calcium and magnesium vitamin to assist that, so far no cramp.<br /><strong>Pain relief:</strong><br />When I left hospital my dominant pain was the right femur fracture and general leg pain from the operation.<br />My pain relief was Oxycontin slow release capsules, 40mg morning, 30 mg evening and Oxynorm immediate release capsules. This was reduced on day 17 and 18 to 30mg and 20mg and is about to be reduced again. The dominant pain now is myeloma back and ribs. I have not used Oxynorm since day 1.<br /><strong>Peripheral neuropathy:</strong><br />It is recommended not to take alpha-lipoic-acid on days one has Valcade.<br />I have some peripheral neuropathy from previous thalidomide treatment and take alpha-lipoic-acid capsules and vitamin B to reduce the symptoms. My haematologist said alpha-lipoic-acid has no interaction with Lenalidomide that he is aware of but just in case I reduced my alpha-lipoic-acid capsules from 1200mg a day to 600 a day. My decision, on reflection it should have been all or nothing. Day 23 I started to feel numb and cold feet. I have since resumed the alpha-lipoic-acid back to 1200mg per day, again my decision.<br /><strong>General:<br /></strong>Myra has returned to work after taking 4 weeks off to look after me. I certainly needed her in the first 2 weeks as I recovered from the leg rods and fracture. The second 2 weeks became a game of “what can Sid do for himself today”, a gradual process of regaining independence.<br />My myeloma bloggers and Lenalidomide web information have said if any problems or side effects arise from Lenalidomide it will be during the first cycle. Now I have completed cycle 1 I anticipate the worst is over and look forward to progressing through to the end of cycle 2 without incidents. That leaves me to focus on getting my right leg and walking back to normal.<br /><br /><strong>Links:</strong> (Links open in a new window).<br /><a href="http://supersidnz.blogspot.com/2010/04/lytic-lesion-right-femur.html" target="_blank"><span style="color:#ff0000;">Lytic lesion right femur.</span></a> Occurred April 3 2010.<br /><a href="http://supersidnz.blogspot.com/2010/04/lytic-lesion-right-femur-update.html" target="'_blank"><span style="color:#ff0000;">Lytic lesion right femur update.</span></a> April 8 2010.<br /><a href="http://supersidnz.blogspot.com/2010/04/why-did-this-happen-to-me.html" target="'_blank"><span style="color:#ff0000;">Right femur fracture.</span></a> Occurred April 14 2010.<br /><a href="http://supersidnz.blogspot.com/2010/05/loss-of-independence.html" target="'_blank"><span style="color:#ff0000;">Loss of independence.</span></a> May 16 2010<br /><a href="http://supersidnz.blogspot.com/2010/05/lytic-lesion-right-femur-update-2.html" target="'_blank"><span style="color:#ff0000;">Lytic lesion right femur update 2.</span></a> May 23 2010Sidhttp://www.blogger.com/profile/11123133496860716719noreply@blogger.com2tag:blogger.com,1999:blog-1310417489443581726.post-10875053323989424632010-05-23T10:05:00.002+12:002010-05-23T10:10:23.453+12:00Lytic lesion right femur update 2Update 2 on lytic lesion right femur from myeloma.<br />Last week I had an appointment with orthopedics to discuss bone progress and to x-ray the leg.<br />The rod and pins are all stable.<br />The myeloma lesion has not reduced; it seems to have increased slightly. As I am only 3 weeks into treatment for myeloma (Rev-lite trial) there is some catch up on lesion/myeloma reduction to go there. I did not expect the lesion to reduce the day treatment started. The bone doctor is reporting back to my Haematologist on this.<br />Next week I have an appointment for the completion of the first cycle of the Rev-lite trial where I can quiz my Haematologist on all those matters.<br />I am making good progress with leg strengthening and walking around the home with the big walker. I can put more weight on the leg now.<br />Next goal is to drive the car. To qualify I have to get in and out of the car, start and run the car (it’s an automatic) and be able to walk a reasonable distance.<br />Now I’m getting all excited!Sidhttp://www.blogger.com/profile/11123133496860716719noreply@blogger.com3tag:blogger.com,1999:blog-1310417489443581726.post-18053787923156700062010-05-16T13:27:00.005+12:002010-05-16T13:46:38.573+12:00Loss of independenceWhen I was in hospital recently for my myeloma lytic lesion right Femur rodding and lytic lesion right femur fracture <a href="http://supersidnz.blogspot.com/search/label/Lytic%20lesion"><span target="_blank" style="color:#ff0000;">LINK</span></a> I was bed ridden.<br />I could not use or put weight on my right leg. This left me dependent on help from other people, my independence had gone. My independence stopped at my finger tips.<br />It became evident what my essentials were: cell phone, radio, diary, pen, lip gel, hand wash, clean underwear and bathroom bag. All were kept in 1 drawer that I could reach or in a plastic container on top of that drawer.<br />Non essentials were in another drawer and cupboard out of reach to me.<br />I had to learn to ask for help and press the help buzzer. The nurses were good, as they said their job is to help the patients.<br />Physio gave me a range of exercises to do in bed several times a day mainly to get the leg working again. Towards the end of the bone fracture stay they encouraged me to get out of bed to use a walker. This was a struggle as I needed increased short term pain relief to cope with the leg bone pain. My pain relief is controlled release oxycontin tablets, 40mg morning, 30mg evening.<br />When I was discharged from hospital to home I was still in hospital help mode. The occupational health team inspected our home, gave me a wheel chair and a big walker, put in a ramp at the door step, increased the height of my bed and 3 seater with packers, gave me a bath board, shower chair and commode.<br />Myra had a serious talk to me about self help and that she could not do everything for me. She had taken 4 weeks leave from work to help me through the first cycle of the Rev-lite trial and during leg recovery. I was in a wheel chair, in pain from myeloma and the bone fracture; both gave me restricted movement. I was not helpless so we discussed what I could or could not do and set some new achievement goals.<br />It is now 3 weeks since discharge. The myeloma and bone pain has reduced; I can move my leg sideways where previously I could not. I am using the walker more walking 30 minutes 3 times a day along with the walker exercises. There is less restricted movement; I can get in and out of bed by myself, showering myself, drying the dishes at the sink and back in charge of the TV remote. There has been a big step forward.<br />I am regaining my independence.Sidhttp://www.blogger.com/profile/11123133496860716719noreply@blogger.com5tag:blogger.com,1999:blog-1310417489443581726.post-1300761844497807452010-05-10T11:41:00.005+12:002010-05-10T11:57:48.345+12:00I’m on the Rev-Lite clinical trial<strong>False starts:</strong><br />After 2 false starts I am now on the Rev-lite clinical trial for relapsed myeloma.<br />False start #1 was a lytic lesion suddenly detected in my right femur requiring hospitalisation for intramedullary reconstruction nailing.<br />False start #2. 14 days after discharge I could not put any weight on my right leg and it was very painful. An x-ray showed there was now a fracture in the lesion, in hospital for 8 more days.<br /> <br /><strong>Clinical trial summary:<br /></strong>My Rev-Lite trial commenced on Wednesday 28th April 2010.<br />Study title: <em><span style="color:#ff0000;">Phase II trial of low dose Lenalidomide and dexamethasone in relapsed or refractory multiple myeloma (Rev-Lite) in patients at high risk for myelosuppression.</span><br /></em>The purpose of the study is to see whether a lower dose of Lenalidomide in combination with dexamethasone is effective in treating multiple myeloma which has not responded or relapsed to prior treatment, while producing fewer side effects in comparison to the higher dose used in previous trials.<br />Brand name = Revlimid. Generic name =Lenalidomide.<br />Treatment for first 4 cycles of 28 days is:<br />Lenalidomide 15mg dose on days 1 to 21, then 7 days free.<br />Dexamethasone 20mg dose on days 1-4, 9-12, 17-20, and then 8 days free.<br />Aspirin daily.<br />After 4 cycles the status of my disease will be reassessed. If my disease has shown improvement or remains stable I will continue on the study. If my disease has become worse my participation in the study will stop.<br />There are the normal warnings of many side effects.<br /><br /><strong>Funding:</strong><br />In New Zealand we have a public health service. Unfortunately the funding agency Pharmac does not fund Valcade or Revlimid. They are approved for use in NZ and applications for public funding are in the system. We have to compete for the Pharmac dollar along with all the other cancers and illnesses. If we want it we have to fund it ourselves. Currently 6 months of Revlimid costs about NZ$50,000. The Rev-lite trial is at no cost to me.<br />Private health insurance for cancers is a recent development in NZ that is gaining popularity though the cost is alarming. Previously we had believed that the health service would be the provider. I did not qualify for the Valcade trial but do for the Rev-lite trial.<br /><br />My myeloma journey continues.Sidhttp://www.blogger.com/profile/11123133496860716719noreply@blogger.com7tag:blogger.com,1999:blog-1310417489443581726.post-60170859595185328162010-04-26T20:54:00.001+12:002010-04-26T20:58:35.746+12:00Why did this happen to me?I was due to start my rescheduled myeloma Revlite clinical trial on 15th April 2010. Unfortunately the evening before the trial I developed huge pain in my right femur the one that had been rodded and pinned 2 weeks prior. I could not apply any weight to my right leg. Next morning I could not get out of bed so phoned the hospital who cancelled my trial and ordered an ambulance to take me to hospital.<br />X-rays were taken that showed I had a small fracture at the lytic lesion.<br />The next 8 days were spent in hospital. Orthopaedics confirmed that the rod and pins were all in place with no problems there.<br />My pain killers were increased and physiotherapy commenced with leg exercises in bed. The rod and pins in my left humerus were giving me pain limiting the use of crutches. It was decided I needed a walker designed to take pressure off my arms. It has 2 handles for my hands like a triathletes handle bar and a flat padded base that I can lean on.<br />After 8 days I was released home in a wheel chair along with my walker.<br />Next haematologist appointment is Tuesday 27th April where we discuss what happens next.<br />This has been a huge disappointment to me with 2 attempts at the clinical trial being postponed at the last minute.<br />After reading of side effects of Lenalidomid and dexamethasone that others have experienced I wonder if it is worth having chemotherapy until the leg fracture is healed and I am mobile again. The side effect of cramp on a fractured leg worries me.Sidhttp://www.blogger.com/profile/11123133496860716719noreply@blogger.com5tag:blogger.com,1999:blog-1310417489443581726.post-72728060971927654762010-04-08T20:17:00.001+12:002010-04-08T20:20:29.702+12:00Lytic lesion right femur updateMy right femur is making good progress 13 days after full length rod and pins to support a lytic lesion.<br />There was no bone fracture so that reduced the pain. I am getting about on crutches with good rotation of the ankle, knee and hip.<br />The wounds are clean with no seepage.<br />Next Monday I visit the orthopaedic out patients for x-ray, stitches removed and examination.<br />The following day I have an appointment with my haematologist to review my clinical trial that never got started. The day before my leg rodding I had an MRI scan which identified a few problems that require attention. When these are addressed will have to be discussed.<br />My right leg needs radiation. I can’t start the trial until 4 weeks after radiation.Sidhttp://www.blogger.com/profile/11123133496860716719noreply@blogger.com1tag:blogger.com,1999:blog-1310417489443581726.post-32783527306423512532010-04-03T16:19:00.002+13:002010-04-03T16:23:54.821+13:00Lytic lesion right femurI have been offline for 12 days, here’s why.<br />Sunday 21st March 2010 I was out for an hours walk with Myra. After 5 minutes I started limping. 20 minutes later I had to stop for a rest then limped slowly back to the car. We drove home where the situation got better with pain relief and rest.<br />Next day while off to work in the bus I developed back spasms and more pain causing me to return home for pain relief and rest. Took the next day off. The following day no improvement so phoned daystay who said come in for an examination and x-rays.<br />The x-rays went to radiology and orthopaedics and later that day my good news/bad news came back.<br />Good news was we know what the problem is.<br />Bad news is we are transferring you to North Shore hospital immediately by ambulance.<br />My right thigh bone (femur) has a pathological lytic lesion in the bottom third about to fracture. Myeloma was eating it away from the inside out. There had been no prior warning, no pain at all. I was unaware of a lesion there, this was totally unexpected.<br />So I was hospitalised for an intramedullary reconstruction of the right femur. Full length rod and pins.<br />After the anaesthetic block wore off the leg became very painful. I am home now; pain is getting less though I am still weak and tired. Movement is returning to the leg so I am starting to get around on crutches.Sidhttp://www.blogger.com/profile/11123133496860716719noreply@blogger.com4tag:blogger.com,1999:blog-1310417489443581726.post-74033847558036681122010-03-23T15:52:00.003+13:002010-03-23T16:00:16.101+13:00Myeloma relapse 1<p>My autologous stem cell transplant for myeloma in December 2001 took me into the plateau stage. I was free of bone pain, life had virtually returned to normal,<br />The plateau “golden years” continued until September 2006 when I suffered a pathological fracture of my left mid shaft humerus. It sneaked up on me, came from nowhere. At that time my test results showed no indication of myeloma, all was normal, I was feeling good.<br />In January 2007 I commenced maintenance treatment of Thalidomide, 50mg/day.<br />All remained normal until December 2007 when my IgG and paraprotein started to increase. Until then because of the normal test results I could not accept that myeloma had returned. Perhaps I was in denial. I wanted the plateau dream to continue.<br />Faced with the facts of these increased results my denial was over. It was time to face the truth; plateau 1 had come to an end, relapse 1 had commenced.<br />I developed a lytic lesion in the surgical neck of the left humerus. That was treated with radiation.<br />Peripheral neuropathy from Thalidomide was becoming an increasing problem.<br />A lytic lesion developed in the mid shaft right humerus and shoulder. That also was treated with radiation.<br />Bone pain was increasing, IgG and paraprotein was increasing, myeloma had well and truly returned.<br />It was decision time, 3 options were considered.<br />1. Increase Thalidomide with a corresponding increase in peripheral neuropathy.<br />2. Add or change to cyclophosphomide and dexamethasone.<br />3. A second ASCT using the remaining stem cells collected in 2001.<br />In New Zealand we have a free public health system. Velcade and Revlimid are not available from Pharmac the treatment managing agency so were not considered.<br />In August 2008 I was given autologous stem cell transplant 2 which put me into plateau 2.<br /><br />Plateau stage: A stable stage of my disease following a good response to anti cancer treatment.</p>Sidhttp://www.blogger.com/profile/11123133496860716719noreply@blogger.com2tag:blogger.com,1999:blog-1310417489443581726.post-63945400376301044542010-03-20T19:25:00.002+13:002010-03-20T19:28:26.082+13:00I found my earsOne of the positives from having myeloma is I found my ears!<br />Before myeloma I was a typical male, didn’t listen, wouldn’t listen, too busy too listen.<br />As my daughter used to say, “Dad, your ears are painted on”. Though I wouldn’t admit it, she was right.<br />Being diagnosed with myeloma, learning about myeloma and going through initial treatment I had to gain knowledge by listening to and trusting others. This is when I had to stop, shut up and listen. Good things happened when I learnt to listen.<br />I realised that the 2 lugs on the side of my head had another purpose other than holding my glasses on, they are a listening device. When I stopped and listened people made sense.<br />Learning to listen has been one of my survival skills.Sidhttp://www.blogger.com/profile/11123133496860716719noreply@blogger.com0tag:blogger.com,1999:blog-1310417489443581726.post-44615146618566358982010-03-17T21:44:00.002+13:002010-03-17T21:49:31.808+13:00Bone marrow biopsyThis week in preparation for a clinical trial I had a bone marrow biopsy.<br />I have had 4 previous bone marrow biopsies during my myeloma journey.<br />Unlike a few unfortunate others I have had no problems except for a little soreness over the following 2 days.<br />The procedure at my hospital is to have a local anaesthetic and a mild sedative, I agree with that.<br />The sedative puts me to sleep; I feel nothing and wake up in the recovery room when it is all over.<br />Myra always comes along to watch and said that when they pull the sample out my toes wriggle!!<br />Now I wait for the results.Sidhttp://www.blogger.com/profile/11123133496860716719noreply@blogger.com0tag:blogger.com,1999:blog-1310417489443581726.post-20292835861077830492010-03-07T21:09:00.008+13:002010-03-07T21:35:35.292+13:00Soft tissue plasmacytoma update 1A quick update.<br />Went to the oncologist last week for a 6 week post radiation follow up. All is well; the two soft tissue plasmacytoma on my skull have reduced as expected. I asked for my hair back and all I got was a smile.<br />Unfortunately 3 more lumps have appeared and my IgG and paraprotein are rising.<br />The problem now is not soft tissue plasmacytoma in isolation but my myeloma being systemic (throughout the body). We need to treat the cause, myeloma returning.<br />I have been in discussion with my haematologist. The last treatment cyclophosphomide and dexamethasone only gave me 3 months remission. Valcade and Lenalidomid are not available by Pharmac for free in NZ, my options are reducing. As a result we are exploring the option of a clinical trial, preferably Lenalidomide and dexamethasone.<br />Big appointment Wednesday 10th afternoon.<br />Will tell you more when I know for sure.<br /><br />Link:<br /><a href="http://supersidnz.blogspot.com/2010/01/soft-tissue-plasmacytoma.html" target="_blank"><span style="color:#ff0000;">Soft tissue plasmacytoma</span></a><br /><a href="http://supersidnz.blogspot.com/2009/07/health-update-july-2009.html" target="_blank"><span style="color:#ff0000;">Pharmac<br /></span></a>Sidhttp://www.blogger.com/profile/11123133496860716719noreply@blogger.com1tag:blogger.com,1999:blog-1310417489443581726.post-52965636417927702062010-03-03T22:27:00.012+13:002010-03-03T23:01:53.391+13:00Survivorship – 1: Proactive stanceSurvivorship presentation on myeloma survivorship, my first four months.<br />Part 1 of 6. Proactive stance<br /><br /><strong>1. Survivorship Pro-active stance.</strong><br />Before I could move forward and fight my disease I had to address issues that would hold back my progress. There was to be nothing holding me back.<br /><strong>Ownership:</strong> I had to take ownership of my illness, it was my disease no one else’s. It was then I created my saying “my body, my illness, my treatment.”<br /><strong>Denial:</strong> When my doctor told me I had cancer, multiple myeloma, I did not want to believe him. I told him he was wrong, it was some one else’s results. Denial was short, I faced the truth quickly.<br /><strong>Emotion:</strong> Tears flowed; at times I could barely talk. I learnt not to let the emotions build up too high; it was that “C” word. I learnt how to release the emotion early, I learnt how to cry.<br /><strong>Anger:</strong> I was angry, why me, I have too much to live for, too much to loose, too much work to do. Talking it through with others helped. Like emotions I learnt to deal with anger as it happened, don’t let it build up.<br /><strong>No abuse:</strong> There was potential for abuse from me: mental, physical, emotional. My life philosophy of no abuse was reaffirmed. No abuse, not negotiable.<strong><br />Confront death:</strong> Myeloma is a cancer with no cure, a consequence of myeloma is death. I was young, only 53, thought I was bullet proof, never considered death, had no time for it, death was for other people. I had to confront death, bring it out into the open to move forward.<br /><strong>Be a pro-active patient:</strong> I wanted to know everything about myeloma, treatment, the hospital system. Being a passive patient was not for me, I wanted to be pro-active.<br /><br />Links to previous relevant postings:<br /><br /><a href="http://supersidnz.blogspot.com/2009/04/you-have-cancer.html" target="_blank"><span style="color:#ff0000;">You have cancer.</span></a><br /><br /><a href="http://supersidnz.blogspot.com/2009/04/decision-made-to-be-myeloma-survivor.html" target="_blank"><span style="color:#ff0000;">Decision made to be a myeloma survivor.</span></a><br /><br /><a href="http://supersidnz.blogspot.com/2009/06/confronting-death-from-myeloma.html" target="_blank"><span style="color:#ff0000;">Confronting death from myeloma.</span></a>Sidhttp://www.blogger.com/profile/11123133496860716719noreply@blogger.com0tag:blogger.com,1999:blog-1310417489443581726.post-20862827126519683922010-02-28T15:53:00.002+13:002010-02-28T16:01:26.425+13:00Survivorship – The first 4 months<p>Late last year (2009) I gave a presentation to my myeloma group on myeloma survivorship, my first four months.<br />My presentation commenced with my condition at diagnose and I discussed if I wanted to be a survivor.<br />Some of my strengths are: Positive attitude, can see the big picture, don’t get bogged down with trivia, good planning and organisational skills, a willingness to learn, a self belief that I can do anything. How I used those strengths as part of my survivorship skills was explained in the six survivorship skills I identified.<br /><br /><strong>Pro-active stance:</strong> Take ownership of my illness. Before I could move forward and fight my disease I had to address issues that would hold me back.<br /><strong>Myeloma support group:</strong> A support system with other myeloma patients.<br /><strong>Team Sid:</strong> A network of practical help and support.<br /><strong>Create a myeloma and medical knowledge base:</strong> To take ownership of my illness I had to learn about my illness.<br /><strong>Maintain a positive attitude:</strong> Continue what I always do, be positive.<br /><strong>Create positive affirmations:</strong> Compliments a positive attitude.<br /><br />My next six postings will expand upon those six survivorship skills.<br /><br />Two survivorship definitions:<br />Stages of survivorship: Debbie Moore LBF NZ.<br /><em>Acute –Begins with diagnosis and spans the time of further diagnostic and treatment effects.</em><br />Livestrong - Lance Armstrong Foundation.<br /><em>Survivorship begins at diagnosis, the moment your battle with cancer begins, and continues through your treatment and beyond.</em></p>Sidhttp://www.blogger.com/profile/11123133496860716719noreply@blogger.com0tag:blogger.com,1999:blog-1310417489443581726.post-47956496928522009112010-02-17T21:19:00.002+13:002010-02-17T21:24:35.049+13:00Do it sooner rather than laterSix months after my first stem cell transplant for myeloma (2001) Myra and I discussed my progress and medical future with my haematologist. All was going well, my bloods, IgG etc were normal.<br />We said we had intended to travel as we got older. He said <em><span style="color:#cc0000;">“do it sooner rather than later.”</span></em> Rather ominous but that’s myeloma.<br />He said because of my compromised immune system try to avoid long haul flights and be selective where we travel. Avoid counties with limited hygiene, over crowding and be careful of what I ate.<br />I was 54, still had to work for an income. Our decision was easy.<br />We would plan a holiday (vacation) of 2 to 3 weeks once a year. Exploring New Zealand where we live and Australia a three hour flight across the Tasman Sea.<br />Our themes were keep it simple, let’s have fun, let’s create some memories, lets spend quality time together while I am well.<br />As we have a son and daughter-in-law in Sydney we factored a few visits there.<br />Our Australian holidays have been:<br />Cairns 2003<br />Sunshine Coast June 2004<br />Gold Coast 2005<br />Sydney May 2006<br />Sydney Christmas 2006<br />Gold Coast to Sydney Sunshine Coast (2007)<br />Sydney (NRL grand Final) September 2007<br />Melbourne May 2009<br />Sunshine Coast November 2009<br />Australia has a warmer climate than New Zealand. We travel in May (southern hemisphere autumn/fall) when the day time temperature is about 24C (75F).<br />Lots of good memories.Sidhttp://www.blogger.com/profile/11123133496860716719noreply@blogger.com0