[eveParticipant]

History.
My husband had CDT as first chemo,6 cycles that did not work,straight to CDV again 6 cycles this worked,then SCT which after 100 days. BMB he had complete remission,only for it to return within 6 months. Went on CDR .
His platelets from SCT never reached the minimum (150 to 400 ) and has struggled since to carry on treatment CDR and maintain platelets.
This has resulted in platelets not being produced because of lack of platelets he has been unable to carry on with Chemo treatment.

My question is has anyone else had this problem????
We know what are situation is!!! Eve

[peggyParticipant]

Hello Eve,
Sorry to hear about Slim’s predicament.
I’ve been trying to recollect my treatment, it was some time ago now. I believe I was diagnosed approx June 2011 and went straight to RCD on the myeloma X1 trial. After quite a few major hiccups,and receiving six doses of Velcade to get my light chain readings down, I proceeded to my SCT. I don’t think that any time during the whole of these proceedings that my platelets were ever over 20, a lot of the time they hoverered around 10 and even dropped to as low as 1 I think. When receiving the Velcade I had a platelet transfusion before the Velcade was administered. In my situation they continued despite the low readings but then we know that all people and cases are very different.
A year after my SCT and in complete remission my platelets have just reached the all time high of low 30’s.
I hope that Slim’s treatment is able to continue soon if it has not already restarted.
All the best on your myeloma journey,
Peggy

[eveParticipant]

Hi Peggy

Thank you very much for replying and specially for the information,Slim is a little bit different from you but I am assuming you had platelets every time you had Velcade?????

We are going to the Royal Marsden in Sutton this coming Tuesday,Slims consultant has arranged a second opinion,
The problem Slim has is that after 3 recommended treatments,by NICE,he is unable to get on any trials as he cannot meet the criteria plus they have no way of monitoring his condition,the only way is by BMB,the latest 25 to 35 in bone marrow,very patchy!!! The consultant said even on compassionate grounds it would do more harm than good.

I would have liked him to have a very low dose of Velcade supported by steroids to keep some form of control of the Myeloma,and if there was platelets infusions at the same time like you had this would help!!!!

Slims had very little remission and Velcade did work to get him a SCT,because Thalidomide and Revilimid are cousins,and Thalidomide did more harm than good I was against trying Revilimide,but NICE have guild lines,and understandable his consultants had no lea way.

So the consultants position after consulting the team,is they can no longer give Slim treatment for Myeloma,but will continue to support him with bloods and platelets.
We have not asked how long,as I do not believe anyone can really tell,but the danger is internal bleeding or infection,although his WBC and Nuets are holding there own,but I suppose as the Myeloma increases this will change

I have always thought he was high risk Myeloma plus none Secretor ,but told he is an un usual case,but never explained fully,I am all for individual treatment as you say Myeloma Patients are all different,consultants should have more say on treatment and patients plus carers should be included if they wish.

So we wait to see if the Royal Marsden can help.thanks again for your reply.Eve

[BADGERParticipant]

Hi Eve

sorry slim is still unwell did you know there is Velcade 2 a follow on which is supposed to be even better than the first one I have just or three months ago finished velcade didn’t need platelets at all but had several blood transfusions not been on this site for weeks could not get on every way I tried my son in law did it for me
Love Jo x

[eveParticipant]

Hi Jo

Lovely to hear from you,I have been thinking about you and wondering what was going on specially with the Damocles falling a little bit.

Thank you for information on Velcade I did not know about the second batch of Velcade only that it can be used again on patients who have responded well first time round,all good news.

How are you Jo?? Keeping all those germs away I hope?
I am having the same problems getting in on here,I use an I Pad,but I think I have cracked it now,when I sign in and loose the page,I just treat it,as the page is still there and eventually it comes up.

I started posting mainly to see if anyone was in the same position as Slim,Peggy kindly replied,I am not up to date with new treatment and trials coming up,plus I suppose I am to emotional at this present time,so not a good move.
I do hope Velcade works for you,and keeps the sword way up in the air. Love Eve

[BADGERParticipant]

hi Eve

the velcade really worked for me o paras at the moment the kidneys got worse AFTER I finished chemo funny that so much so they fitted a fistular in my arm any way I must be an ornery b*gger as they have improved at the last visit to the clinic My consultant told me of the new improved velcade which is supposed to be even better than the one they are using today you can have it if the first regime worked We managed a week in Majorca last half term went with my daughter and grandson
Love to Slim from Jo <

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