[kazza909Participant]

Hi everyone, my mum who is 64, was recently diagnosed with myeloma in June 2017, she has just finished her 3 cycle of velcade, due her 4th on the end of September. The doctor has mentioned she is fit enough for stem cell transplant, she is very scared and worried about the side effects, what is the alternative if she doesn’t go ahead with the transplant? Thanks

[kazza909Participant]

Don’t know if this hasn’t worked can someone let me know?

[sabsParticipant]

Kazza you have posted correctly

I’m pretty new to this forum my other half was diagnosed in March we have just started the beginning of the stem cell harvest – and its not good so far and we don’t know if he will have the SCT at the end of it all either (trial randomisation either the SCT or another 4 cycles) before he then starts his 18 months maintenance. I don’t know what options there are to be honest, I heard of one patient who was or is just on a continuous maintenance program not sure how long that is going to go on for or if its some kind of trial.

But i have heard chances or longer life are far better if you have the transplant. And while you can get scared by reading all the side effects and risks, not everyone is the same some people do suffer and some people can walk it through with no major issues.  The loss of control is probably the worst thing through all of this.

[kazza909Participant]

<p style=”text-align: center;”>Thank you, I hope your partner gets on ok with the transplant, we meet with the dr on the 28th so maybe they will give mum some more information to the maintenance side as I don’t think she will cope with the stem cell transplant</p>

[pipsParticipant]

Kazza

I know how you and your mother may be feeling.

I was totally terrified when I was first diagnosed with Myeloma.

I was diagnosed 7 years ago and had a stem cell transplant almost seven years ago now. When I was 49 years of age .

In the last seven years after my stem cell transplant, I have lived well and almost normally forgetting about myeloma . I continued working and enjoyed life.

I have however, relapsed a few months ago and now I have just finished  my 4th cycle of Velcade, Dex and thalidomide.

The treatment has worked well at reducing my para protein from 19 to 2 and whilst I may need a 5th cycle, to achieve complete remission , the aim is for a second stem cell transplant which I hope will achieve a long remission once again. Of course with a second transplant, one cannot hope to achieve as long of a remission but if I were to achieve only half, of what was achieved before, that is three years of being drug free, that would still be a blessing …

now of course

myeloma is such an individual disease and the response and treatments  have to be tailored for each individual patient with the advice of your colleagues consultant .

I wanted to share my experience of having had a stem cell transplant and aiming to have a second one..

I have not tolerated well the current VDT as the steroid, velcade and thelidomine, a combination of these powerful drugs leaves me incredibly tired and the side effects such as  neuropathy, constant tinnitus and weight gain..

so in my case, being able to be drug free for a while, is worth it and a second stem cell transplant is definitely the way forward.

I wish your mother well in this difficult time.

Pips

[kazza909Participant]

Thank you pips, her pp has went down from 2000 to 30 in the last three cycles which seems to be good, does this mean she will be in remission when they get it low enough?  The stem cell transplant seems to work really good for a lot of people but she feels she could not handle it just now 🙁

[pipsParticipant]

Kazza

It is good news that your mother ‘s current treatment appears to be working well, that is so good as it is not sadly always the case for everyone. So this is in itself something to be celebrated and be grateful for!

As for the stem cell transplant, it is rough going for a few weeks but after that, once the strength is back, things start to be easier and certainly, if it works, it could be an option to consider.

I can imagine how frightening the whole process is and making a decision must me also paralysing .

As i have said, I can only share with you my personal experience, as myeloma is such an individual disease where one treatment or stem cell transplant may or may not work for all …

Kazza the best way forward is to discuss fully with your mother ‘a consultants your fears, and reservations and explore with the consultants all the options open to your  mother. Prepare a list of questions so that you are well prepared. Also you will find information on this website on treatment section which explains Stem Cell Transplant.

Akso you could get support and your questions answered also by the clinical nurse from the hospital where your mother is being treated.

Again wishing you both courage as there is hope and options ….

Pips

[kazza909Participant]

Thank you so much pips I appreciate that. Good luck to you too

[taffdParticipant]

Before I had myeloma confirmed, I’d done a shedload of reading about it. I told my consultant at the beginning that I didn’t fancy a transplant as I didn’t think I’d be able to handle it.

Luckily, I’m one of the few who achieved complete remission with just the induction regime, CTD.

Radiotherapy caused colitis and sepsis – had I had a transplant, I’d not have survived the sepsis.

 

Regards

Taff

[kazza909Participant]

<p style=”text-align: left;”>Hi taff that’s great news, sorry I’m not really clued up with all the details it’s been so overwhelming, would the CTD be what my mum is getting just now?</p>

[taffdParticipant]

Hi kazza, it sounds as if your mum’s on VTD, where she has Velcade where I had cyclophosphomide.

 

Regards

Taff

• This reply was modified 7 years, 1 month ago by  taffd.

[kazza909Participant]

Yes that’s what she gets, see how it goes on the 28th thanks

[susie45Participant]

Hi Kazza, just seen your post…

I was diagnosed last September and after 4 cycles of chemo my pp was down to 4 and was told I was a suitable candidate for sct. I was petrified and said that I couldn’t go through with it. My anxiety was really high. I had had a bad start to the chemo the steroids didn’t agree with me and made me over anxious and also quite poorly.

Anyway for my families sake I went for the referral at a London hospital as my local one didn’t do sct. I agreed to go through with it— harvesting started on 17 May sct on 17 July and here I am 8 weeks post sct on and so glad I went through with it as hopefully it will give me a few years in remission. I am 63 so similar to your mum. To tell you the truth it is not as bad as you think it will be. I saw the consultant yesterday for my 1st check up and he told me that after the sct I didn’t recover as well as most people and quite frankly I din’t think I was too bad. I certainly wouldn’t hesitate to have another one now! The best thing I ever did was joining this forum as I was at home worrying and thinking that I wasn’t recovering quickly enough and as soon as people who had actually been through it told me I was fine it put my mind at rest and because I wasn’t worrying I’m sure I started to recover!

I know everyone is different with myeloma but no-one could have been more petrified than me… I was actually visibly shaking at my first sct consultation. But I did it and am really glad.

Hope this will help you and your mum!

Thinking of you!

Susie x

[kazza909Participant]

Thank you susie that is very helpful I will show my mum hopefully she will speak with the doctor and not put it off

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