[bernardParticipant]

Hi. I was cancer free after my first line treatment but went ahead with my stem cell. I feel it did give me extra remission but of course I can’t know for sure. I’ve had a second stem cell procedure and on 3rd line treatment and this all helps to extend our lives I guess.

[znabParticipant]

Hi garhow55,

It’s the acronym for another line of treatment; VRD-PACE = Velcade, Revlamid, Dexamethasone, Platinol (or Cisplatin), Adriamycin (or Doxorubicin), Cyclophosphamide, and Etoposide.
I had it because I had a tumorous growth about a 4-6 weeks after a successful induction. The VRD-PACE (another variation is DT-PACE where you have thalidomide instead) and is more intense than induction but it’s what was needed. In some ways it may have prepared me a little for what may come with the stem cell transplant!

All the best

[znabParticipant]

Thanks Bernard,
Waiting to start the SCT – it was delayed as a I had the flu… hopefully I’ll start this Weds!

[hydeParticipant]

I am 75 and on my 4th week of chemo with no side effects other than constipation and swollen legs. I feel good apart from one day each week when I have no energy, otherwise walking, exercising and gardening. No pain in the bones. My various blood counts have dropped considerably so feel very positive.
I am trying to decide whether to have SCT or have the stem cells frozen and use them later as needed. If use SCT later, I know I would need to go through another 4 months of injection chemo beforehand but as stated I have few side effects. If I have SCT after the current Chemo it will mean 2-3 weeks in hospital which does not sound great and then 3-6 months to recover energy levels so does it make sense to freeze and use them later?
Interested to hear both sides of SCT now or later.

[tony642Moderator]

Hi Hyde,

I was 60 when I had my SCT. I was told that the decision as to whether you are offered SCT is sometimes age-related, so if you decide to not have it now, and you wait until you feel you need it, then you might not be offered it then. best to speak to your medical team about the consequences of not having it now.

I know it is an uncomfortable time, with an unwanted lengthy stay in hospital, but I have now been cancer free for over 3 and a half years, and if I needed it again, and was offered it, I would accept it without question, as without it in the first place, my cancer was so advanced that I am convinced I would not be here now.

It is of course your choice, and your decision would be respected.

Regards, Tony

[mulberryParticipant]

Welcome to the forum Hyde.
My understanding is that age 75 is on the cusp agewise of being considered suitable for stem cell transplant, so as Tony says, you need to check out with your drs whether it’s now or never for you to have the procedure.
Stem cell transplantation is a daunting process to enter, you go into hospital or clinic feeling pretty well, knowing that you will feel worse. However most of us end up agreeing to do a second transplant, fully knowing what it entails, if we are offered it. For the majority of us it is not nearly as horrific as we feared. Bear in mind we have to be told about all the common potential side effects for ethical reasons, but no patient will experience all of them. I know one person whose only side effect was to lose her hair. She had no mouth problems, gut problems or any other problems despite her drs telling her daily to expect them! She’s had no sign of myeloma for over 3 years so far since. During my SCT I had a few side effects, a bit of nausea & sickness, alot of diarrhoea and I caught parainfluenza virus in hospital – but my major issues were fatigue and sciatica which have proved a small price to pay as it’s over 4 years since I had the SCT. Since then any health problems have not been myeloma related and the myeloma has not reared its head yet. There may turn out to be other long term consequences of SCT for me, but in the 4 years that I’ve been “in remission” several new treatments have been approved, and newer approaches to dealing with myeloma are further down the pipeline, more likely to be available for me in the future.
In the meantime I’ve had a good quality of life NOW, and was doing so since before day 100 after SCT.

[taffdParticipant]

Soon after diagnosis in 2016, I decided not to have an SCT, as I thought it’d kill me, as I wasn’t well enough.

Turned out I was correct as I developed an ischemious bowel due to radiotherapy and had to have my sigmoid colon removed.

Had I had an SCT, I’d not have survived.

[rabbitParticipant]

Hi Hyde,

My haemotologist and I agreed that it would be best if I did not go ahead with an SCT. Many reasons…

1. I have a heart condition. The SCT would put strain on my heart that could kill me.

2. He had read recent research that, at least for my high risk version of myeloma, SCT made little difference in terms of life expectancy.

3. I had responded unusually well to the first line of chemo, but had continued to have chemo for the full 6 cycles originally planned (so my cancer cell count would be exceptionally low now I am in remission).

4. The aphoresis didn’t go so well. I only have enough stem cells frozen for one SCT. Better to keep that in reserve at this stage.

[Author]

Posts