[petesilverParticipant]

Started on pomalidamide in November but by the second cycle it was making me quite ill, got thrush,chesthad a BT also had infection which put me in hospital for a week on a iv antibiotic drip, and a general feeling unwell have no appetite, lost 2 stone, the problem is it is bringing down my PP. Now I am having a months break to see what I feel like, then I have to decide how I want to go forward, I think I have exhusted most of the drugs, I don’t think any other is available so I suppose I am reaching the end of the road after 12 years of treatment.

[annlynnParticipant]

please dont say that peter !!im sure therel be something else th a t theyll pul out of the bag. youve done so well. twelve years is fantastic please keep your positive head. on best wishes annlynnxx

[petesilverParticipant]

Yes Ann Lynn perhaps I am being over dramatic, I will really know more when I see my consultant in two weeks time, I don’t really want to carry on with the pomalidamide if it makes me feel like  I do, so I hope he can come up with something else. Thank you for your reply I will try and keep my positive head on.

Peter

[sarowjenParticipant]

Never give up Peter,there are so many treatments to try ! I’ve only just started my journey on treatment but really want to live as long as I can ,who knows they may even find a cure ? I’m sure your consultant will suggest an alternative for you .Will be thinking about you and hoping you soon get into remission again .
Love and Best Wishes
Sarah

[petesilverParticipant]

Hello Sarah I wish you well on your treatments, I have to say that I have had quite a few years of remissions from some of the drugs, my biggest disappointment was that my SCT only lasted about 14 months but Velcade actually gave me 4 years, but only had various results from Bendamustin, and lenalidamide, and now it seems I can not tolerate pomalidamide, still on a positive note they have kept me going with a reasonable quality of life so I can’t complain so i promise to try and keep a positive outlook.

[sarowjenParticipant]

I’m on velcade as they thought thalidomide would make the diabetic neuropathy I already have,worse 😟 I’ve only had one injection so far so much to early to tell if it’s doing anything .I was lucky enough to be diagnosed at a very early stage ,I have no symptoms at all ,my kidney function is good and no bone damage as far as we know although the my lumbar spine is showing signs of severe degeneration ,got to have an MRI to see if it’s arthritis or myeloma bone disease. I do have arthritis all over the place so I suspect it is that !
So disappointing for your SCT to only last 14 months ,such a horrible thing to go through for such a short remission 😕 .Can you have another SCT Peter ? May be worth it if you can ,maybe with a follow up of drug therapy ? Certainly worth discussing with your consultant ?
My consultant told me that at the stage I’m at some people refuse treatment u til they are poorly ? I can’t understand that ? I want to minimize any damage to my body while I can !
Take Care Peter and keep in touch xxx

[janwParticipant]

Hi Peter

I am sorry that pomalidomide appears to be causing you so many side effects, especially if the drug is managing to keep your myeloma levels in check. It’s balancing quality of life v ongoing treatment. Living with serious side effects which make you unwell must be daunting and depressing. I’m currently on Velcade and it’s causing quite bad peripheral neuropathy in my legs as well as fatigue, muscle weakness in the legs and nausea. The pain in my one leg can be hard to cope with even with pain relief, but at least I know the treatment is only for around six months and hopefully the nerve damage should improve after treatment has finished. However, due to the nerve damage the velcade has been reduced with only one injection per week instead of twos which has helped with the intensity if the nerve damage. Can your daily pomalidomide tablet mg dose be reduced to see whether this alleviates some of your side effects?

Another possibility is to discuss with your consultant the new drug of panobinostat which has just been approved by NICE (see details under news on this website). It’s combined with Velcade and Dex. It sounds as though Velcade has worked for you in the past which is great news if you can use it again with a new drug. Depending on where you live, perhaps the MUK 8 clinical trial might be suitable (details on this site).

I hope you can find a way to maintain some form of myeloma treatment and keep a good quality of life, especially as you have already achieved a remarkable twelve years living with myeloma and hopefully will live many more years when even more drugs should be available in the UK to fight myeloma. At present, there is the promising elotuzamib drug being considered for fast tracking approval in Europe.

Regards Jan

[petesilverParticipant]

Hi Jan unfortunately the pom really made me unwell even put me I’m hospital for a week on a antibiotic drip because something they call CRP was showing I had an infection, and my appetite has gone and lost 2 stone since I started pomalidamide. But I really have to wait to see my consultant in 2 week then decisions have to be made. I am only on half dose of pom which is 2mg so I don’t think there is much room for reduction. I hate PN with all the different drugs I have had unfortunately it effects my feet permanently not painful just feel numb, it’s like walking on  cotton wool but you get use to it. Thank you for the info I will bear it all in mind.

Regards  Peter

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