[alpenatorParticipant]

Just back from seeing my consultant with the news that MM is back after 10 months remission.
Not what I wanted to hear but it is what I expected as I had noticed a lump in my skull getting larger and vey quickly. My eyesight has also been blurredd, which is where I started when first diagnosed in May 2013.
What do I expect from my second phase of chemo, which I think is going to be Velcade plus my old friend Dex?
There is a possibility of going on a trial but I dont have details yet. Any info on these?

[rebeccaRParticipant]

Hi Anthony, so sorry to hear your news – 10 months is just not enough. I had velcade and dex for the full 8 cycles before I had SCT. I had it as a once a week jab, no gaps in treatment – believe most do a twice a week treatment and a weeks rest after 3 weeks, I think. I found it quite kind with just tiredness getting moreso as the months went by. Velcade is well known for peripheral neuropathy so be sure to mention it if it becomes an issue. I only got it on the last couple of cycles and not much. It is known to act very quick reducing numbers quite dramatically in the first 2 cycles then it will slow down a lot. Velcade is also thought to be good for working on cytogenic abnormalities. I think the big problem with it is it is not known for long remission once you have stopped – tho’ having said that the helpline told me they have known cases of 2 years remission. I would go for a trial if at all possible and save this one for later and try to get a better remission period but having said that I found I could lead a normal life with it just fine, albeit tired, and I think sometimes if your numbers reduce they can keep you on the full 8 cycles worth but spin it out a bit with how you are given it. I had it before SCT and would have been more than happy to just continue with this and the dex for a lot longer but, as you know, we are all different. I am sure you will find it much easier than CTD and if it doesn’t work I think they can add in the Cyclo-something drug to boost it. Basically, I think it either suits or it doesn’t, dependant on if you get PN with it. Good luck
Rebecca

[PerkymiteParticipant]

Hi Anthony, I only did 3 months on Velcade by which time I was getting bad PN. I was taken of Velcade and put on Revlimid. I have never been in remission since I started down the MM path, after SCT I got down to 2.9 pp However after 3 months on Revlimid I hit “excellent Remission”, my consultants words not mine, with uncountable PPs i.e. ZERO.

kindest regards – vasbyte

David

[mhnevillParticipant]

Hi Anthony

Sorry you have come out of remission so quickly. A real bumber. I do hope that Velcade does suit you and foes get you into a full remission without PN.

Very best wishes.

Mavis

[janwParticipant]

Hi Anthony

So sorry to hear your news about your myeloma returning after such a short period of time. In your post, you ask about details of clinical trials. If you look on this site under the heading of clinical trials, you can find full details about various trials available for relapsed patients across the UK.

Very best wishes.

Jan

[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

[DorothyParticipant]

Just reading your post I too have blurred eyes but can assure you it gets better after the treatment stops. Keep positive and keep smiling. I had CVAD and thalidomide 10 years ago and have just relapsed – am now on Velcade I am now cycle 6 and still responding well .

[alanjamesbyrneParticipant]

One week today ,I’ve not been to bad bad on the my first week of chemo,,apart from back,neck ,chest ,and shoulders ache,had my worse night so far on day 6 ,couldn’t get out of bed,but the wife massaged me last night,and slept a straight 6 hrs so that was good,I also took a tramadol tablet but something helped ,I’ve been getting very tired,and lose concentration ,maybe it’s lack of sleep,my son brought me a bed grab rail, which has helped a lot ,and I know it sounds disgusting ,a urinal for at night ,I really was struggling to get out of bed ,hate it ,but it makes life easier  ,I’ve also noticed I am a bit quick tempered,but put that down to the steroids,mind you patience has never been my strong point,

 

[grantParticipant]

Hi David,

Would love to know your feedback on having a high lambda light chain count with a low or undetectable paraprotien count becuase the same seems to be happening to me. My Paraprotien levels are dropping but my light chains numbers are not moving, rather staying very high… Doctor says not to worry but i am.

Thanks

 

Grant

[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]

Grant

 

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

 

David

[sue48Participant]

Hi David

just been reading your post, you say you are on velcade, are you also on cyclophosphamide and dex, VCD , by reading on this site not many people who have relapsed seem to be on all 3, I start treatment net week, but the only thing that I am concerned about is the Chclophosphamide, your reply would be appreciated.

 

Sue48

[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

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