Peripheral neuropathy reduction

I have been suffering from peripheral neuropathy caused by thalidomide maintenance for multiple myeloma. After stopping thalidomide the peripheral neuropathy reduced but was still present. The soles of my feet were numb (about 6/10), my feet were often cold and when cold painful, I wore my socks 24/7, I could not walk in bare feet.
To relieve the peripheral neuropathy symptoms I use a multi-vitamin B (including B1, B6, B12 and folic acid) and alpha-lipoic-acid (300mg one/day).
Recently I changed the brand and dosage of the alpha-lipoic-acid to 600mg per day, 300mg at breakfast and 300mg at dinner.
After 6 weeks I began to feel a gradual change in my feet. Now the numbness has reduced (about 2/10), my feet are rarely cold, can walk in bare feet and don’t have to wear my socks in bed.
I attribute this change to the increase in alpha-lipoic-acid.
I was prepared to increase the alpha-lipoic-acid to 1200mg/day but will stay at 600mg/day. If future treatment causes the peripheral neuropathy to return I will increase the alpha-lipoic-acid then and consider including L-carnitine and L-glutamine.

Links:
Myeloma legend Minnesota Don has made an excellent posting on his blog (myelomahope) summarising peripheral neuropathy treatment. The comment at the bottom by Habubrat on the use of alpha-lipoic-acid during chemotherapy is worth reading as well. Don has 7 other postings on peripheral neuropathy treatment found in his labels column.
David Emerson (Beating myeloma) has a good summary of alpha-lipoic-acid. It is worth searching for other peripheral neuropathy articles on his site as well.

Sunshine Coast

We have returned back to New Zealand from our two weeks at Caloundra on the Sunshine Coast Australia, a three hour flight across The Tasman.
Nice weather 28C, 84F, blue skies. Flying in from 16C, 61F, that was a blessing.
Only health problem was a cough which I believe was bought on by the rental car air conditioning.
A highlight was a visit to Australia Zoo the home of the crocodile man Steve Irwin. Very professional, very clean, well sign posted, lots of shade including shade cloth over rest areas. A shuttle service was available for those who struggle with walking or the tired people. The Crocoseum was awesome, crocodiles, elephants, snakes and birds.
Having ornithology as a hobby I spent a lot of time in the rain forest aviary, a walk through enclosure. Wow, to get so close up to all those Australian birds was a memorable experience.
If you are in Australia we recommend the Sunshine Coast and Australia Zoo.
Now back in New Zealand, back to work, back to blogging and only six weeks to Christmas!!
On Tuesday I visit the hospital for a consultation, more on that next week.

Some good news

Some good news today and a disappointment.
My Haematologist was unavailable, had the registrar instead. Valcade application has been declined by Pharmac again, more about that when I return from my holiday.
Now the good news.
August 2008 I had my second autologous stem cell transplant, early 2009 my IgG level started to rise.
After 4 months of cyclophosphamide and dexamethasone my IgG level has lowered from 24 down to 8.8 (880 USA). The normal range is 7 to 16 (700 to 1600 USA). This is the lowest it has been since first diagnose, then it was 80!!!
My bone pain and restricted movement have disappeared. I can drive to a car parking building, reach out to get my ticket pain free. When reversing my car I can twist my body and see where I am going. Road and shopping mall speed humps are now travelled at a faster speed, to hell with the suspension let’s have catch up time.
I can now run after and chase my grandchildren.
All my myeloma friends will understand what I am saying. With myeloma, when the good times are there, take them.
I feeeeel goooood.

Been too busy!

My last posting was back on September 19th. All is well, just been too busy, some of which is explained in this posting.
Chemotherapy and dexamethasone has reduced my IgG down to 10. It was decided one more cycle then reassess. What happens next? I will listen to my consultant on 20th October then present my list of my options and questions, an important day for me. There is still no decision on Valcade being funded by our health system.
Myra and I attended a Lymphoma awareness day here in Auckland put on by the Leukaemia and Blood Foundation (LBF). Survivorship was the theme, something close to my heart.
That got me motivated to ask our myeloma group co-ordinator if I could prepare and present a PowerPoint presentation for our myeloma support group on my survival from diagnose in 2001 through to the end of my initial VAD treatment. She was happy for me to do that so I chose 6 survival skills that I used which I will elaborate on in other postings. A previous posting Decision made to be a myeloma survivor was my starting point.
There were a surprising number of questions from the group on my bone pain which will be another presentation next year. Two previous postings Myeloma bone pain and Morphine for myeloma bone pain are popular search engine hits on my blog. Some one with myeloma bone knowledge like orthopaedics will talk first followed by my experience.
Work hours have increased since a mid-year downturn. I am a structural draughtsperson on a casual employment contract that suits me for health reasons. No more long hours or weekends. Work keeps me normal, my brain active and brings the dollars in. That along with more time on my religious studies has cut into blog time.
My “transplant series” has about 6 more postings to complete. That will be followed by the first plateau/remission stage, more about fun and life there.
At the end of the month we are having 2 weeks holiday (USA = vacation) so no postings then.
It’s spring here in New Zealand, warmer weather so time for vegetable garden preparation and growing. In particular money maker and sweet 100 tomatoes, spring onion, lettuce, radish, silver beet and leeks.
Have fun, be happy.

You searched for that!

On my blog there is a site meter that shows the number of visits I receive. I can access my site meter and read where any referrals come from. Referrals from Google or other search engines make interesting reading.
Here is a short list of recent search results that were directed to my blog “Sid’s multiple myeloma journey”. (My reference posting is in brackets)

Diagnose
Multiple myeloma stage 0
How do you diagnose myeloma? (Pre diagnose)
Myeloma and hypercoagulable state.
Vision and myeloma. (Central vein occlusion)
Myeloma plasmacytoma. (History)

Pain
Bone pain myeloma; (Myeloma bone pain)
Myeloma pain relief; (Myeloma bone pain)
Could pelvis pain be multiple myeloma? (Myeloma bone pain)
Bone pain in humerus. (Myeloma bone pain)
How intense is myeloma bone pain. (Myeloma bone pain)

Treatment
Multiple myeloma VAD treatment. (My VAD treatment for myeloma)
Myeloma stage 3 treatment plan.
Tempazepan medication. (VAD treatment for myeloma)
Myeloma stage I, survivor’s natural treatment;
Sore bum while on chemotherapy. (Transplant dry skin)
Cold sores and myeloma. (Transplant dry skin)

Transplant
Stem cell transplant multiple myeloma. (Transplant stem cell collection)
Harvest stem cells in myeloma. (Transplant stem cell collection)
Myeloma stem cell mobilisation. (Transplant stem cell collection)
Baldness after myeloma transplant; (Transplant hair loss)
Relapsed multiple myeloma transplant will it help and work
Autologous stem cell transplant diarrhoea. (Transplant diarrhoea)
Multiple myeloma dry skin on legs; (Transplant dry skin)

Final stage
Final stage of myeloma. (Confronting death)
End stage multiple myeloma. (Confronting death)
Death from myeloma. (Confronting death)

General
Myeloma aggression or swearing or moods. (Dexamethasone)
Myeloma blog; (Sid’s multiple myeloma journey)
Positive affirmation forums: (Myeloma bone pain)
Affirmation survivor. (Myeloma bone pain)
Eating with myeloma. (Transplant food)
Foods for myeloma. (Transplant food)
Lemon juice for myeloma. (Transplant food)

Health update September 2009

Previous update summary July 2009:
After having my second stem cell transplant in August 2008 all was going well, the 100 day tests were positive, IgG was down to normal, I was feeling good.
Then my 3 monthly tests in May 2009 showed my IgG had increased from 10 to 18, measured g/l in NZ (7 to 16 is the normal range). A month later it had risen to 22, the trend was heading up. Except for the proteins all other tests were OK.

This update September 10 2009.

IgG results: g/l (USA mg/dl)
24 Feb 2009 = 10.1 (1010)
18 May 2009 = 18.4 (1840)
16 June 2009 = 22.2 (2220)
21 July 2009 = 21.8 (2180)
18 Aug 2009 = 12.7 (1270)
Treatment:
It was decided to try to reduce the IgG early with chemotherapy before it got too high.
Valcade and Revlimide are not funded by Pharmac in New Zealand; we will try them on a trial or at a later date. A link to Valcade, Revlimide and Pharmac NZ summary is here.
Chemotherapy; cyclophosphamide (Chemo) and dexamethasone (steroid):
First 28 day cycle commenced Wednesday 1st July 2009.
Second 28 day cycle commenced Wednesday 29th July 2009.
Third 28 day cycle commenced Wednesday 26th August 2009.
Cyclophosphamide: 500mg day 1, 8, 15, 22.
Dexamethasone: 20mg day 1, 2, 3, 4 and 15, 16 17, 18.
Allopurinol: 300mg, 1 tablet per day.
Bactrim: 480mg, 2 tablets Mon/Wed/Fri.
As you can see by the 18th Aug result there has been a dramatic drop in IgG.
When taking the dexamethasone I have sleep problems for about 6 days but no other side effects. I get fatigue the day after I take the cyclophosphamide, no nausea and no other side effects. Bowels have been normal. I still have Aredia monthly.
Soft tissue plasmacytoma:
Two soft tissue Plasmacytoma developed on my skull as the IgG increased, a fine needle biopsy confirmed what they were. They were a pronounced lump, no pain or discomfort, getting larger as the IgG increased. Seven days after the chemo commenced they had reduced by 50%, at the end of the first cycle they had reduced by 80%. By the end of the second cycle they had disappeared altogether.
I have had 2 plasmacytoma in bones before when in relapse; June 2007 left humerus, October 2008 right humerus. Both required surgery for titanium rod prosthesis..
Bones:
My inflamed sternum from continual coughing in June slowly reduced, disappearing mid July. That was painful, like a knife in my chest. X-rays showed no fractures.
At the end of July I had an uncontrollable sneezing bout which fractured a rib, right side, at the back mid height. Pain relief went from Panadol to Codeine to Paradex. I had to sleep on my back for 2 weeks and movement was restricted. It took 3 weeks to start to feel comfortable again and reduce the pain relief.
The rib fracture was a reminder that there is still residual bone damage from my initial state at diagnose in 2001 and relapse in 2007/2008 and I need to be careful. The bone damage can be seen on x-rays.
Peripheral neuropathy:
Peripheral neuropathy from 14 months on Thalidomide in 2007/2008 has stayed in my feet though has reduced. Only mild, doesn’t restrict me other than having to wear socks 24/7 as my feet can get cold. To help myself I massage my feet and take vitamin B+ and Alpha-lipoic-acid.
Chemo brain:
Chemo brain from my stem cell transplant in Aug 2008 has subsided, memory is better but I still have a problem remembering names. I still write lists of things to do, work procedures and technical terms. People’s names with a word prompt are kept in a notebook. E.g. Mary Smith, lady with a limp.
General health:
General health is fine. I am working 5 days a week 9.00 to 4.30. Drinking 2 L of liquid per day, mostly water. Myra and I follow the principles of a low GI diet; beans, pulses, protein, lots of fruit and vegetables. Walk for an hour both days in the weekends and 30 minutes at least twice during the week. Currently no bone pain or pain relief or restricted movement.
Vitamins:
The vitamins I take are:
A man’s multivitamin: Mon/Wed/Fri.
Vitamin C: 250mg/day.
Cartia: 1/day to thin my blood.
Vitamin B+ complex: For peripheral neuropathy, 1 per day.
Alpha-lipoic-acid: For peripheral neuropathy, 300mg morning and evening.

Glossary:
Cyclophosphamide: Cyclophosphamide is a chemotherapy drug that is given as a treatment for many types of cancer.
Dexamethasone: Dexamethasone is a synthetic adrenocartia steroid. When used in the treatment of myeloma it can trigger the destruction of myeloma cells. My seek and destroy missile.
Allopurin: A drug used to prevent high levels of uric acid in the body, including the increase caused by certain cancer medications. High levels of uric acid may cause gout attacks, kidney stones or renal failure.
Bactrim: Used as an antibiotic during chemotherapy.Aredia: In myeloma Aredia (a bisphosphonate) can delay and reduce the number of skeletal events and reduce bone pain.

This is one of “part 2” a series of postings relating to my autologous stem cell transplant for myeloma. As they are complete the posting series can be found under labels/part 2 [Part 2 link]

Myeloma transplant - Exercise

How to approach exercise during my stem cell transplant for myeloma had me baffled. What exercises to do, when, how long, why, could I do it, will it have any good or bad effects.
My medical advisers said that being isolated and immobile during transplant would cause muscle wasting and may cause decreased circulation, DVT, pneumonia or respiratory complications.
My attitude was if I was to achieve a successful outcome I want to stack all the odds in my favour so if maintaining exercise during transplant was going to help my success then I would do it.

Pre transplant I had recovered from initial treatment, gaining strength and walking an hour a day.
Until my white counts dropped too low I continued walking at the hospital for 30 minutes at a time when I could, initially outside then the hospital corridors. My pace slowly reduced as my white counts lowered and fatigue started.
When my neutrophils were low and I was unable to go outside the ward I used an Exercycle in the ward and walked around the room.
The hospital physiotherapist gave me a range of exercises to do during transplant. Stretching, chest expansion, deep breathing, ankle strengthening, arm lifting and rotation, leg lifting all on the bed or standing up and generally tried to keep moving to maintain circulation and limit muscle wasting.
There were times when I could not exercise due to fatigue or tiredness.
Did it help? A little, if I did nothing my condition would have deteriorated. When leaving the BMTU I was fatigued, could walk slowly non stop for 15 minutes and had to rest.
I believe exercise kept me healthier during transplant and helped me recover more quickly.
This is one of “part 2” a series of postings relating to my autologous stem cell transplant for myeloma. As they are complete the posting series can be found under labels/part 2 [Part 2 link]

Myeloma transplant - Mucositis

From other myeloma transplant patients who had a myeloma stem cell transplant a common comment was about mucositis, mouth and throat issues.
From transplant day one I maintained a rigid commitment to following the recommended teeth and mouth wash process even when I didn’t feel like it. My attitude was not negotiable; it was in my interest to maintain a healthy mouth during transplant. The mouth wash was supplied by the hospital.
During the first transplant I had no mouth or throat issues. Unfortunately during the second transplant for two days I had difficulty with mucositis, saliva became thicker and being unable to swallow. To overcome this, my medication was given intravenously and pain relief increased. Once my white counts started to rise the mucositis disappeared.
Day 3 was when I first started to feel a change in my mouth. When my white counts started to rise as my stem cells engrafted it was on day 13 that my mouth began to return to normal.
Food and fluid intake became a hassle while mucositis was present.
[Food link] and [Nausea]
Preparation before transplant is important. My dentist was briefed about my transplant, a dental check was completed with no action required. Healthy gums and teeth help in the prevention of any mouth hygiene issues during transplant. My dentist gave good advice on hygiene, teeth and gum cleaning which was similar to the transplant team advice.
Mucositis and painful mouth and throat issues can be controlled by pain relief administered by the transplant team. It is short term, once the white cells start increasing the problem subsides.

This is one of “part 2” a series of postings relating to my autologous stem cell transplant for myeloma. As they are complete the posting series can be found under labels/part 2 [Part 2 link]

Glossary:
Mucositis: Inflammation of the mouth and throat lining which often occurs after high dose chemotherapy.

Myeloma transplant - Food

Food and fluids were a major issue for me during both myeloma stem cell transplants leaving me with weight losses of 8kg and 4 kg respectively.
After about 6 days my white counts were coming down, my appetite decreased, nausea increased, mouth and throat became sore and tender, taste buds changed and it became difficult to swallow. [Nausea link] Eating food and drinking became a hassle.
Myra prepared some food recommended by the hospital dietician, food which was easier to eat compared to the hospital food. All my food was approved by the medical team and dietician.
What I could tolerate was moist soft food in small portions, spaghetti, creamed rice, pasta, macaroni, soup, tinned baby food, mashed veggies, mashed potato, the hospital ice cream and yoghurt, jelly and mixed fruit. Breakfast was rice bubbles or wheetbix with ample milk. When the going got tough there were several days when I ate my rice bubbles two at a time. I was advised to add a little more sugar to sweet foods and salt to savoury foods. This had little effect on my taste buds though others have said it made a difference to theirs.
Water became tasteless so I added lemon juice or mixed it with fruit juice. Fruit juice by itself, ginger ale, ginger beer and ginger tea was a good option and I enjoyed a cup of normal tea or coffee.
There were lemonade ice blocks which were soothing. I should have negotiated with the BMTU to bring in my own flavoured ice block or ice cream on a stick.
The nurses made a divine milkshake, so soft and cool.
The problem with the hospital food was I had to order it the day before and often I got the chefs choice, not what I ordered. A lot of it was dry and hard. It had to be eaten when it came, portions were too big and some times the smell of it put me off. I wanted small moist portions when I needed them not big portions when it arrived.
Unlike some others I never vomited and that was probably because I ate small portions of food that I could tolerate.
Generally I tried to eat a little often, not always achievable especially when I was feeling nauseous. There were times when I just did not want to eat, so I didn’t. I always ate sitting up as I felt this would help my digestive system and I could focus on eating even if it was slow.
Keeping my fluids up was difficult as mentioned previously; water became tasteless, bland, difficult to swallow and nausea effects. To prevent dehydration my fluids were monitored and maintained by being fed intravenously through my central line.
Hygiene is important so I always washed my hands before eating or drinking.
After going home the nausea, lack of taste and lack of appetite continued for about 3 weeks before a gradual change for the better.

This is one of “part 2” a series of postings relating to my autologous stem cell transplant for myeloma. As they are complete the posting series can be found under labels/part 2 [Part 2 link]

Myeloma transplant - Nausea

During both autologous stem cell transplants for myeloma I have suffered from nausea. Who didn’t?
Nausea is a common side effect of high dose treatment and can be effectively controlled by anti-sickness drugs. It is my policy not to put up with side effects that can be controlled so I use them. There are different types available; you need to tell the nurses you need them and to help find the right one for you.
When I suffered nausea I wouldn’t eat so it was in my interest to take the anti-sickness drugs. For me, the drugs did tone nausea down but did not always eliminate it completely.
Effective for me have been Metamide, Zofran, Maxalon and Cyclizine.
Nausea first came to me during transplant about 6 hours after melphalan and stayed constant for 2 weeks controlled by anti-sickness drugs. After that it reduced slowly and did not disappear until 8 weeks after melphalan. That is when I no longer needed the drugs regularly though there were occasional outbreaks over the next 4 weeks controlled by drugs when needed.
When the nausea disappeared after 8 weeks I started to eat more and gain weight.

To help myself I:
Told the nurses when I was suffering nausea.
Took anti-sickness drugs at onset of nausea.
Kept the nurses informed if the anti-sickness drugs were ineffective.
Ate slowly and in small quantities.
Ate sitting up for good digestion.
Stayed sitting up for at least 30 minutes after meals.
Wore loose fitting clothes especially around the tummy.
I did find that ginger products can assist nausea. That was ginger beer, ginger ale, ginger crystals and ginger biscuits.

This is one of “part 2” a series of postings relating to my autologous stem cell transplant for myeloma. As they are complete the posting series can be found under labels/part 2 [Part 2 link]