[dxsParticipant]

Jan Walker’s post (Feb. 9) asks the question: “Can your daily pomalidomide tablet mg dose be reduced to see whether this alleviates some of your side effects?”. The answer should certainly be YES. I’m on cycle 4 of Pom having seen a marked reduction in my lambda light chain count at the end of cycle 2 although it went up a bit after cycle 3. However to get back to the question above, my consultant mentioned that she has 2 other patients on reduced dosages of Pom because they have experienced side effects. I guess I’m lucky because I’m getting the full dosage w/o side effects. Remember that everyone reacts differently which makes Myeloma so hard to treat. Hope you have better luck.</span>

David

• This reply was modified 8 years, 9 months ago by  dxs. Reason: System put in extraneous characters which detracted from my reply

[dxsParticipant]

Bernard

As Tony wrote, read up all you can on bone marrow (stem cell) transplants, talk to Myeloma UK and check with the Myeloma Support Group in your area. As you may know, being put on a path towards SCT is part of the NICE-recommended regime — and NICE dictate the financial side of things as regards Myeloma treatment. My 6 cycles with Velcade/Dex ended last month with my paraprotein count undetectable but with my lambda light chain count increasing after cycle 4. Had a long talk with the chief SCT consultant in my area who did not pressure me to consent to SCT. He did advise – as a useful halfway step – to have my stem cells collected and frozen until such time as I agree to SCT or it’s the only course of action left. I have in fact just had my stem cells collected and fortunately it went well. The reaction to SCT will vary with everyone depending on such factors as age and other physical problems. Ask your consultant about mortality rates for your age and what is the expected extra remission time you should get. Then subtract 6 months from that because you’ll be recovering from the op. If you have other medical conditions, check for medical interaction problems with your drugs and melphalan (the usual high-dose chemo drug in the SCT procedure). Many personal factors also come into play e.g. do you live alone, do you or your partner have to look after elderly parents, can your partner severely cut back on his/her activities including work to look after you, do you have good district nurse support in your area etc. Hope this helps.

David

[dxsParticipant]

Sue

I was never on Cyclophosphamide throughout my 6 cycles with Velcade, only Dexamethasone.  My paraprotein count was never that high and it had decreased with the couple of cycles I had with Cyclophosphamide, Dexamethasone and Thalidomide. While it is generally true that 2 anti-myeloma drugs are better than 1 and 3 better than 2, the question of excess toxicity comes into play. Readers of this Forum will know that everyone reacts differently to anti-myeloma treatment and the SCT consultant I saw at Queen Elizabeth Hospital in Birmingham sort of echoed this by saying it can take weeks for your haematologist to know what your body is doing. That’s why all the blood tests. Luckily, I never had any adverse reaction to the Cyclophosphamide, hope the same holds for you.  David

[dxsParticipant]

Grant

 

Plse see my further reply under the topic Velcade and Lambda light chain counts.

 

David

[dxsParticipant]

Having just seen one of the chief SCT consultants at Queen Elizabeth Hospital, Birmingham a few days ago the answer to the differing paraprotein and lambda light chain counts is relatively simple: it is likely that I am one of those people who have 2 myeloma clones. This is more common than most realise. There is at present no hard and fast guideline on what the lambda count must be before SCT is commenced. After dropping to 286, my lambda count increased to 331 then 383 at the end of cycles 4 and 5 with Velcade. The consultant is fairly certain that the treatment with Velcade has bottomed out and that no more improvement (decrease) in the lambda count can be expected. He therefore agrees with my regular haematologist to stop the Velcade after 6 cycles, which has in fact just ended. Refreshingly, he didn’t push me to undergo SCT. Rather, he thought that stem cell collection was a useful thing to do; it gives you the option of SCT later on if the myeloma progresses.

[dxsParticipant]

Grant

 

Wanted to get this to you even tho the info is incomplete. Have just started cycle 6 of Velcade and it will probably be my last because after dropping consistently since June, my lambda light chain count increased the last time my consultant got the figures. I should get another set on Fri. My consultant says that if the lambda count doesn’t drop anymore, it’s time to stop the Velcade after 6 cycles. As it happens I’m seeing the chief wallah at QE2 in B’ham on Oct. re a Stem Cell Transplant (even tho I’m not convinced). I will ask him about this question of stopping treatment when the lambda count is still above 26.5. Also seeing my regular haematologist on Oct. 23 and will get back to you after that.  David

[dxsParticipant]

Hi Anthony

You will know that everyone reacts differently to MM treatment but I hope you can take heart from my Velcade experience to date. After Thalidomide on the std CDT treatment gave me peripheral neuropathy and a blood clot in my right calf, I was taken off it and after a gap, was started on Velcade. After 4 of 6 cycles I have had no side effects and my paraprotein count is undetectable. My concern is my lambda light chain count: I estimate that at the end of cycle 6 the count will be around 140, far higher than the recommended range of 5 – 26.3. I put a new topic in this forum on that but have had no reply yet on what people’s experiences have been when their consultants wanted to stop treatment with a [relatively] high lambda count. Have just sent a query to the Myeloma UK nurse. Was interested to hear of your blurred eyes, I have the same thing and am wondering what to do about it! Hang in there. [P.S. Am male, age 71] David

[dxsParticipant]

Hello Ian

Sorry about your Dad, perhaps he’s around the same age as me (71)? If his treatment includes Thalidomide, tell your Dad to report any numbness, tingling or shaking in his fingers or toes ASAP. Thalidomide is notorious for that side effect – properly known as peripheral neuropathy. Also tell him to report any soreness in his muscles (particularly legs) ASAP. That could be a sign of a blood clot, which Thalidomide is also known for. Unfortunately I’ve had both.

Lenalidomide (Revlimid) is a much newer substitute for Thalidomide with reduced peripheral neuropathy but still will blood clot risks. Bortezomid (Velcade) still has the peripheral neuropathy risk but apparently with much reduced blood clot risks. You pays your money……… I’m glad that Mavis had a successful CDT treatment (which is what I started on) but it is – from what I read – a little out of date. The villain in the piece is NICE and the treatment recommendations it makes. Ian – please suggest to your Dad to have his haematologist fully explain the options available.

Best of luck. David

[dxsParticipant]

Thanks to Tony, David B., Eve, Fiona and Rebecca for their responses so far. One of the things I have found out in researching myeloma survival rates is that 47% of newly-diagnosed patients can expect to live 5 years (Cancer Research UK) and that is what my consultant haematologist tells me as well. One of the points that hit home (courtesy of my daughter who had cancer) is that with an extra 18 months of remission with SCT, you effectively can write off 6 months of that because you’ll be in recovery. Do not underestimate the length of the recovery period. Reading these pages I was struck by one person’s experience of being perpetually tired 11 months after undergoing SCT. Unusual perhaps but I think you must factor in the length of the recovery period and limitations on what you can do before reaching a decision.

Clearly at my age, it’s now or never to have SCT which is why I’m going into the numbers angle very carefully. Whilst I appreciate that the evidence shows that std induction treatment followed by HDT and (Autologous) SCT gives the best result, one must weigh up the pros and cons very carefully. As my wife points out, new drugs are being developed all the time so if I don’t have SCT, there will be further options when my remission ends. One can also hope for the possibility that NICE will accept consolidation and maintenance treatment in the future after your induction treatment ends. (After all, they licensed some anti-cancer drug last year which only gave another 4 months life expectancy.) Reading this forum, I am beginning to see that treatment is a postcode lottery: some patients are accepted into a clinical trial, which seems to get better results, and others have an induction treatment of 6 months whereas my 18 weeks is 4 1/2 months. Final comment about the mortality rate of 5% for patients undergoing SCT: I’ve seen on a U.S. website that the mortality rate for this is 1-5% so 5% in the UK would seem to be in the ballpark as they say. (And they claim the mortality rate is 20-30% if you have a SCT with a donor rather than your own stem cells.) As my sister is a doctor in the U.S. I hope to publish whatever she can find out. Regards to all. David

[dxsParticipant]

Thanks to all who replied. I am pursuing the Macmillan angle.

[dxsParticipant]

Lucky you – us over 65’s are not eligible for PIP.

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