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.…[Read more]

Jan Walker’s post (Feb. 9) asks the question: “<span style=”font-family: Arial, Oswald, ‘Helvetica Neue’, Helvetica, Helvetica, Arial, sans-serif; font-size: 13px; line-height: 19.5px;”>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…[Read more]

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…[Read more]

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…[Read more]

Grant

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

David

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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

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