Central vein occlusion again

A month after finishing my final VAD cycle for myeloma and 2 days after my stem cell harvest (2001) I developed blurred vision in my left eye resulting in a mild central vein occlusion. A previous posting of mine covered that.
Link: Left central vein occlusion.

Three and a half years later (April 2005) I developed blurred vision in my right eye.
This occurred during my first plateau stage. Two months earlier I had stopped taking Interferon Alpha-2A maintenance treatment. At the time of the blurred vision I was on no medication, all my test results were normal. An appointment was made to see the eye clinic at the hospital where the eye was inspected and tests were carried out.
The left eye (previous central vein occlusion) showed “no signs of the previous vascular event.”
The right eye presented a “swollen optic nerve with tortuous veins and numerous nerve fibre layer haemorrhages. There was diffuse macular oedema.”In simple terms 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. As a precaution my hematologist prescribed a daily low dose aspirin (Cartia) to help thin the blood which I continue to have.
A follow up 9 months later showed that the right eye had returned to its normal state.
I have had no eye problems since.

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.]

Glossary:
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.

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.]

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

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)
Transplant
Recovery

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
Registrar
Consultants.
Dietician
Pharmacist
Physiotherapist
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
Iron,
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.]

Myeloma DVT

Five days after diagnose for myeloma (June 2001) I developed a pain in my right calf. Being optimistic I assumed it was a muscle strain, “No worries, it will be better next week” I said.
It was getting worse. When I limped into the day stay clinic limping and supported by a crutch the registrar took one look at me and said “That maybe a DVT”. He explained that it was quite common for myeloma patients to have a DVT.
With myeloma the myeloma proteins bind to normal blood clotting factors increasing the chance of blood clotting.
The Register examined my leg, asked about the symptoms. Common symptoms of DVT are pain, swelling, redness and warmth all of which I had in my leg. He then sent me off for an ultra sound scan resulting in confirmation of a DVT.
The treatment was 7 days of heparin injections followed by warfrin tablets to thin the blood and close monitoring. It soon cleared.
No more DVT’s have occurred since though I have had a central retina vein thrombosis in my right eye (Oct 2001) and left eye (April 2005). Both were considered myeloma related and both cleared after 3 months. More about them in later postings.

Glossary;
DVT (deep vein thrombosis): Term used to describe blood clots that form generally in the deep veins of the legs.
Heparin: An anticoagulant that slows down the clotting mechanism and allows your body to break down the clot.
Warfarin: An anti coagulant drug used to prevent the blood from clotting and to treat blood clots.
Anticoagulant: A substance that prevents the clotting of blood.

Summary June 2001 to January 2009

Here is a summary of my MM story from diagnose in June 2001 to now January 2009.
I was diagnosed with MM stage III IgG kappa in June 2001. At diagnose I had extensive bone involvement including 3 fractured ribs, one collapsed vertebrae and one partially collapsed vertebra. Two weeks after diagnose I developed a DVT in my right calf which soon cleared with the help of warfrin. A DVT is not uncommon for MM patients. Initial treatment was VAD (Vincristine, Adriamycin and Dexamethasone) and the bisphosphonate Aredia and after 4 months I had a good response to both. This was followed by a stem cell collection which gave me enough stem cells for two transplants. In November 2001 I developed a retinal vein thrombosis in my right eye which was MM related. The symptoms were blurred vision which fortunately cleared by 3 months.
In December 2001 I had an autologous stem cell transplant and again a good response which led me into the plateau stage.
At the beginning of the plateau stage I was on interferon which caused no problems initially but I soon became progressively depressed. Depression is one of the side effects of interferon and for me stopping the interferon eliminated the depression.
In March 2005 I developed another retina vein thrombosis, this time in my left eye which followed the pattern of the previous one, blurred vision which again fortunately cleared by 3 months.
All was fine until September 2006 when I suffered a pathological fracture of the left mid shaft humerus which required surgery, a full length rod and pins (titanium prosthesis) followed by radiation to kill off any MM. My IgG level increased at this stage but reduced after radiation.
It was then decided that I would benefit from maintenance therapy of a low dose of Thalidomide. All was well for eight months when I started to feel the dreaded peripheral neuropathy in my finger tips, the sole of my feet and in the toes. After another four months the neuropathy had increased so the dosage was reduced giving a small reduction in neuropathy. It soon increased again so I stopped the Thalidomide. The neuropathy has since reduced but I can still feel it in the soles and toes.
In November 2007 my IgG levels started rising accompanied by pain in my right humerus, the start of my disease relapse. A lytic lesion was developing in my right humerus, radiation decreased the pain but the IgG levels kept increasing.
A discussion on further treatment came to the conclusion that a second stem cell transplant was the best option. This was scheduled for July 2008 but delayed one month for other urgent cases. By the time I entered The BMTU I was suffering MM pain in the spine, ribs and right humerus. My right arm had to be kept in a sling to prevent a breakage.
Eight weeks after the second transplant I had surgery on my right humerus, a full length rod and pins (titanium prosthesis).
The 100 day post transplant #2 tests have come in successful. Yeeeeehaaaaa!!!!!!!!

Glossary:
BMTU: Bone marrow transplant unit
DVT: Deep vein thrombosis.
IgG: Proteins produced by plasma cells.
MM: Multiple myeloma, a cancer of plasma cells that usually arises in the bone marrow.
Plateau: When myeloma is stable. A period of stability.
Prosthesis: Artificial body part such as a limb.