Thursday, July 30, 2009

Central vein occlusion

A month after finishing my final VAD cycle for myeloma and 2 days after my stem cell harvest I developed blurred vision in my left eye. Harvest link
An appointment was made to see the eye clinic at the hospital where the eye was inspected and tests were carried out.
Results indicated the left eye showed a mild central vein occlusion. No treatment was required and I was advised that over the next 3 months my vision would either improve or deteriorate. My left eye improved and returned to normal.
Central vein occlusion is associated with abnormalities of blood flow and can be caused by systemic disease processes including multiple myeloma, protein C and S deficiency. [Source: causes link] I have read elsewhere but can’t find the source that the use of warfarin may contribute as well.
At diagnose (June 2001) I suffered a DVT in my right calf and was given warfarin therapy. DVT link
It was noted in my medical notes that the left eye central vein occlusion was felt to be secondary to my hypercoagulable state as a consequence of myeloma.

My sequence of events at time of blurred vision was:
Saturday 28th Oct: Warfarin therapy stopped. Low weight heparin commenced.
Wednesday 31st Oct: Apheresis line inserted.
Thursday 1st Nov: Stem cell harvest day 1 of 2.
Friday 2nd Nov: Stem cell harvest day 2 of 2.
Sunday 4th Nov: Blurred vision left eye first noticed.
Monday 5th Nov: Warfarin therapy recommenced.
Wednesday 7th Nov: Heparin stopped.

Sid’s theory on reasons why:
Two days of stem cell harvest moved my blood around like in a washing machine, disturbed the blood cells causing some coagulation to move into the fine blood vessels of the left eye.

Three and a half years later (April 2005) I developed blurred vision in my right eye.
An appointment was made to see the eye clinic at the hospital where the eye was inspected and tests were carried out.
Results indicated the right eye showed a mild central vein occlusion. No treatment was required and I was advised that over the next 3 months my vision would either improve or deteriorate. My right eye improved and returned to normal.
Can’t blame the stem cell harvest this time.

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.]

Hypercoagulable state: A hypercoagulable state is the medical term for a condition in which there is an abnormally increased tendency toward blood clotting (coagulation).
DVT: Deep vein thrombosis.

Monday, July 27, 2009

Myeloma transplant - Stem cell collection

Before my transplant could commence I had to have my own stem cell collected/harvested.
Stem cells normally live in the bone marrow. They can be encouraged to move out of the bone marrow and into the blood stream from where they can be collected. This process is called “stem cell mobilization” and usually involves the use of stem cell growth factors (e.g. G-CFS) in combination with chemotherapy.
[Source NZ Leukaemia and Blood foundation]
To commence the process I was given chemotherapy (cyclophosphamide) which gave me the normal nausea for a few days.
This was followed 5 days later by G-CSF daily injections by Myra to stimulate the stem cells to multiply eventually moving out of the bone marrow into the blood stream for collection. [Peripheral blood stem cell mobilization and collection]. Daily blood tests were now required to find the optimum time for stem cell collection.
An apheresis line [Central vein catheter in chest wall] was inserted into my chest for stem cell collection and also used during my ASCT. My catheter was inserted into a large vein in my chest then travelled down the vein into the top of my heart. It had 2 lumens (thin plastic tubes) an inlet and outlet. The nurses flushed my lumens and changed the dressings regularly to prevent infection. It was used during ASCT for fluids, chemotherapy, antibiotics and other drugs, blood and platelet transfusions, stem cell infusion. My veins are thin and hard to find so it was a relief to know all was being done down the central line eliminating the need for constant needles.
During the night before my stem cell harvest I experienced the most intense pain I have ever felt. Commencing about 1.00 am the pain was in my pelvis, top of legs and lower back. So intense I could not lie in bed or sit, only stand rigid unable to move. It bought me to a standstill for 30 minutes eventually disappearing after an hour. Myra phoned the hospital who advised panadol or morphine. This had no effect.
I have since read that Neupogen used to mobilize the stem cells usually causes mild to severe bone pain as the marrow goes into overdrive producing more blood and stem cells. This would have been the intense pain I experienced.
If you are reading this and about to have a peripheral blood stem cell mobilization and collection, please discuss the possibility of mobilisation pain and how to control it with your medical team. It slipped under my radar causing me great distress.
The following day after daily blood tests the hospital phoned and said the time was right for my day one of two stem cell harvests. All went well, no dramas. It took four hours, left me feeling tired, I was in bed asleep at 8.00 pm. Overnight I experienced more intense pain but not as intense as the first night. Next day was day two of stem cell harvest, again no dramas. Over the two days there were enough stem cells collected for two transplants. These were taken away for tests and to put in frozen storage.
Two days after the second stem cell collection I suffered blurred vision in my right eye resulting in a retina vein inclusion explained in the next posting.

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 [Here.]

ASCT: Autologous stem cell transplant.
G-CSF: granulocyte – colony stimulating factor.

Friday, July 24, 2009

Myeloma transplant - Pre-transplant planning

Once the transplant decision was made my planning began.
I spoke to other transplant patients, read about transplants extensively and obtained information from the transplant team, nurses and doctors as I wanted to know everything that could happen so if something did happen I new why, what it was and how to cope. No surprises, I wanted to stack all the odds in my favour. I couldn’t see the point in having major medical treatment, life saving treatment without knowing what, why, how, it’s part of controlling ones own destiny. All that information helped me prepare, plan and focus for what was coming up. I could visualise the whole process and this included pre transplant, the transplant and the recovery period at home. This helped in my mental preparation. I have used visualisation, mental preparation and positive affirmation before with success.
The most practical advice I received came from listening to and reading about other myeloma transplant patients, their story, and their experience. Their personal knowledge of what it felt like, how their body reacted, their emotions and feelings, what happened, what didn’t happen and what was unexpected.
I split my planning into three stages.
Pre transplant (this posting)

Your local hospital, transplant team and support team will give you handouts, booklets, DVD and access to excellent information of the whole transplant process. More information can be obtained from the internet, use your favourite myeloma web reference.

Pre transplant support
Meeting with my BMTU nurse introduced me to pre transplant information and my transplant support team.
I welcomed the new people into “Team Sid” and the Team Sid philosophy emphasising they were all on my side, in my team working together helping me.
My support team comprised:
Transplant coordinator
Transplant nurse
BMTU nurse
Social worker
Cancer society; liaison nurse and counselling.
Leukaemia and blood support.
Caregiver, Myra.
GP General practitioner (my Doctor)

Pre transplant medical tests
Meeting with my BMTU nurse introduced me to pre transplant information on all the medical tests required.
Many tests and form filling, some continuing or repeated during transplant. My attitude was let’s do it. Tests are to confirm what is OK and to find if any thing is amiss, that’s all in my interest. Being inquisitive I learnt what the tests were for, followed the procedures with interest, enjoyed the moment meeting some interesting and very professional people along the way. I made it a positive experience. Part of my myeloma journey.
These tests included;
Dental check-up
24 hour urine test
Chest x-ray
Heart function electrocardiogram (ECG)
Lung function test
Bone marrow biopsy
Blood tests. Full blood count, kidney, liver, renal, thyroid
Clotting screen
Blood glucose, virus screening

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 [Here.]

Tuesday, July 21, 2009

Myeloma transplant - Preparation

This is my story of my autologous stem cell transplant for myeloma at Auckland Hospital New Zealand bone marrow transplant unit December 2001. What my protocol was, how I planned it all, what my reaction was, how I coped, how I recovered and what help I can pass on to others. After a successful transplant I relapsed in 2007 and had a second transplant in 2008.
My story, my illness, my body, my medication, my transplant, others may have a different story.

At the time of my diagnose (2001) the conventional treatment in New Zealand for myeloma was chemotherapy, there weren’t the treatment options available like there are now (2009). Those considered healthy enough for a stem cell transplant had VAD followed by the transplant. Others had chemotherapy and its consequences.
My condition was serious, IgG kappa stage III with extensive bone involvement. [Test results at diagnose]. In spite of that I was considered reasonably healthy, a good candidate for a stem cell transplant, so after discussions on current and future treatment options with my medical team I chose VAD plus transplant. Natural remedies and alternate treatments were considered by me but I felt it was too late for those to be effective leaving me putting my trust in conventional treatment. Following my transplant I changed to a low GI diet, eliminated rubbish food, eliminated alcohol, increased fluids and juices, use selected vitamins, reduced stress and continued exercise to suit my condition. After a successful transplant I had six years myeloma free.

From my initial research into stem cell transplants for myeloma, I learnt that other patients had a varied reaction to their transplant experience. Some have had it easy, no major problems, able to spend a minimal time in hospital, more time at home with a short recovery period then back to work early. At the opposite end others have struggled with fatigue, nausea and vomiting, diarrhoea, mucositis, rash, fever, kidney problems, pneumonia and more. Fatigue often continuing during a long recovery period taking up to 6 months to recover. Most patients vary in between those two extremes.
Physical condition, type of myeloma, planning and preparation, personal attitude, mental toughness, and the ability to tolerate melphalan and other treatment medication all contribute.
Except for how I tolerated VAD there was nothing available to indicate to me how I would cope so my preparation was based on a worst case scenario though being an optimistic person hoped I for an easy ride.
The treatment protocol may vary in different countries and hospitals and according to a patient’s health status.

This is the first 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 [Here.]

Saturday, July 18, 2009

Summary of Part 1 "The beginning"

This concludes Sid’s multiple myeloma journey part 1 “the beginning”, part 1 of 6.
It has been an interesting exercise revisiting my diaries and thoughts and sharing them on this blog. What a life changing journey it has been.
There have been 40 postings in part 1, here are 18 of the posting highlights of my blog part 1, or as Myra says, “The juicy bits”. The remainder of the postings can be found in the labels section on the left of my blog.
Click on the red title links to go to the posting highlighted below.


Summary June 2001 to January 2009
A chronological reading of my myeloma journey over that time all in one place made me realise myeloma is not a simple illness, it keeps coming. The goal is to limit its progress.

Pre diagnose
My condition before diagnose. I should have been less optimistic and listened to others.


You have cancer
How I coped when I was told, “Sid, you have multiple myeloma. It’s a cancer of the blood. YOU HAVE CANCER”.

Confronting death from myeloma
Myeloma, a cancer that has no cure. How I confronted death.

Myeloma anger
Why me? I was angry that this cancer invaded my body, an unwelcome intruder.
I had to express and release my anger.


Decision made to be a myeloma survivor
I quickly came to the conclusion that I wanted to be a myeloma survivor, there was no other option. This was the beginning of my way forward.

An inspiration, the first myeloma survivor I met and she had been living with myeloma for 14 years.

Survival tools

Myeloma support group
My lifeline, being an active member of a myeloma support group has assisted me in becoming a myeloma survivor.

Team Sid, a way forward
As part of my way forward to myeloma survival I created “Team Sid”, a network of help and support for medical, emotional and logistical reasons.

Positive affirmations
A survival tool to give me inspiration. “If I can say it, I can do it.”

A positive attitude to survive myeloma
“Success is a by product of a positive attitude”. Another survivor tool.


Myeloma bone pain
My worst aspect of myeloma, bone pain, it hurts. Oh the relief when it went away.

Morphine for myeloma bone pain
Pain relief, how I used it, withdrawal symptoms.

My VAD treatment for myeloma
Summary of my initial treatment VAD.

Bisphosphonates for myeloma
A summary of the bisphosphonate Aredia that I have monthly to treat my bones.

Dexamethasone for myeloma, side effects
Dexamethasone, the steroid that I have used. My seek and destroy missile and the side effects it has given me.


There’s a rat eating my hand
Cancer humour, an amusing story that happened to me. Even in ill health and adversity we must remember and enjoy our humorous moments.

Urine sample for myeloma, no worries
The humour behind trying to pass a reluctant urine sample. It was all my mother’s fault.

Hot news. Join me on Sid’s multiple myeloma journey, part 2 “The Transplant” starting next week.

Thursday, July 9, 2009

Health update July 2009

A Sid update 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 09 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.
I took an emotional hit. Based on the previous transplant I was expecting 3 years of clean health. Perhaps my expectations were too high, after all it is myeloma.
So I had to deal with my anger, my emotions, my disappointment, my shattered dreams, pick myself up off the floor, bring it to a conclusion and move on. Now it's sleeves rolled up ready for the next stage, more treatment.
After discussing the options with my haematologist it was decided to have chemotherapy, cyclophosphamide and dexamethasone. That started on Tuesday 1st July 09 and will run for a 28 day cycle when we view the results and reassess where we go from there.
I did not want Thalidomide treatment because of the peripheral neuropathy it caused me at a low 50mg dose over 15 moths previously. Some of that PN is still in my feet. The other options Velcade and Revlimide have Pharmac and funding issues in NZ. I really do want to use those treatments even if it is a trial or if I can get them on compassionate grounds. An explanation of that is at the bottom of this posting. That will be on the table for discussion at next appointment.
Some times I wish I lived in USA to get access to all the new treatments and trials that are available there.
In recent weeks I have suffered from an inflamed sternum up at the top of my chest. It is very painful to cough, feels like a knife in my chest. There has been x-rays which radiology said showed nothing and I am on a pain killer Paradex. If there is no change or if it does not improve I will insist on a scan.

Bortezomib (Velcade) and Lenalidomide (Revlimide) status in New Zealand.
Q: Velcade is only available in NZ within clinical trials of relapsed myeloma as a second or third line treatment. What steps are being taken for the use of Velcade in NZ to be upgraded?
A: Bortezomib ("Velcade") is registered and available for patients as second line therapy in New Zealand but it is not funded by the health system. This means that a patient would have to pay for the Velcade personally or through the private health care system. It is not a cheap drug. There are also trials available where the drug is supplied free but not all patients can enroll in these trials.
Pharmac are currently considering reimbursement of Velcade in the first relapse setting and we may hear about this in the near future. There is also currently an application with MEDSAFE to have bortezomib registered for first line use in myeloma and we should also hear about that in the near future.
Q: Revlimid, a thalidomide derivative, is not available in NZ. What steps are being taken to have Revlimid available for use in NZ as treatment for myeloma?
A: Lenalidomide ("Revlimid") is registered and available in New Zealand to be used in relapsed myeloma. However it is not funded through the public health system and so a patient would have to pay for the drug personally or through private health care. A submission to Pharmac to consider public funding for this drug will be put forward in June to be considered in August.

PHARMAC The Pharmaceutical Management Agency of New Zealand, PHARMAC, manages a list of subsidised pharmaceuticals, the Pharmaceutical Schedule, on behalf of the Crown. Pharmaceutical suppliers may apply to PHARMAC to have a medicine listed on the Pharmaceutical Schedule for subsidy.

Wednesday, July 1, 2009

Myeloma blogs 1

If you are reading my blog (Sid’s multiple myeloma journey) you may be interested in other myeloma blogs. There are many ways to find these blogs.
Here are the three main sources that I use to access other myeloma blogs.

Planet myeloma
A myeloma blog roll created by Beth who is a myeloma legend, blogging since 2003.
At last count there were links to 36 myeloma blogs: June 2009
On the left of her blog roll are links to postings on listed blogs that have been created in the previous seven days, updated hourly.
I access planet myeloma daily to view the new postings.
Well done Beth, you have given the world wide myeloma family an excellent source of myeloma blogs.

Multiple myeloma forums
Created by Andy, April 2009.
On the home page is a list of featured blogs with a link to the entire myeloma blog collection, 35 so far: June 2009
While in myelomaforums web site have a look around. There is a good forum, featured articles, myeloma news, RSS feeds and much more.

Access your Google
Type myeloma blogs/enter.

Type myeloma blogs.
Pick down arrow at top
Select “more”
Select blogs.
For the latest postings pick “sort by date”.