[dxsParticipant]

[Preamble: I’ve ploughed thru all 575 topics in Treatment and haven’t found what I wanted, hence this new topic.]

The basic question is: WHAT HAVE PEOPLE BEEN TOLD ABOUT THE EXPECTED INCREASE IN REMISSION IF THEY HAVE SCT? I am male, aged 71 (on the limit for SCT at my regional centre), am 10 weeks thru my 18 weeks (6 cycles) of CDT and have weathered it well except I was taken off Thalidomide 6 weeks ago due to peripheral neuropathy in my hands and fingers. My Paraprotein count has dropped from 13+ down to 2.4-2.7 and it was this that led my consultant to refer me to our regional SCT centre. I was a bit annoyed that my consultant has still not had my light chain results. Yesterday I had my 1st interview at the SCT centre, not with the head man but with a doctor who seemed quite capable. My #1 question to him was the one stated above: how much extra remission can people expect with SCT? To my surprise, he stated that their statistics are showing a mean increase of just 18 months, plus or minus. In a few cases they’ve seen up to 5 years.  He also stated that 5% of myeloma patients undergoing SCT never leave hospital!!! That puts risk vs. reward in a different light. Would love to hear what people have been told or experienced. Also, do people know how much High Dose Therapy they’ve had with Mephalan prior to SCT? This doctor said 300mg in one shot which seems crazy because on days 1,8 & 15 of my 3 week cycle, I’m taking 400mg of Cyclophosphamide. Many thanks.

[tonyfParticipant]

Hi, in answer to your query ref SCT? My pp level prior to SCT was 44, after SCT it was at 1.9. Stayed that way and has slowly gone up to 2.9. I am not on any medication, and have had one bout of infection since SCT. I am 70 in August, had SCT 18 months ago, feel and look good. Went to USA and Hawaii recently, had several UK holidays! get a bit tired occasionally! but am ok. I visit specialist every 3 months, next appointment August. So wait and see what’s going on!
I can’t answer re mephalan, never had that!
If I had to make the decision to have SCT now I would say yes Nd go for it.
All the best.
Tony F

[davidbrParticipant]

Hi DXS
As I understand it the standard treatment in the UK as allowed by NICE is 4-6 cycles of CDT followed by SCT and then no further treatment until the Myeloma returns.

Also you get 2 lots of chemo to a SCT. The first a small dose by infusion as an outpatient followed by injections to stimulate you stem cell growth. Then if you have sufficient stem cells they are harvested. When you go in for your SCT you have a further large dose of chemo via your Hickman Line before your stem cells are replaced.

Perhapse the difference in dose is because 1 is taken orally in pill form while the other is infused directly into your blood stream.

I had my SCT in Dec and was told I didn’t really have a choice. I have only acheived partial remission and am luck to be on the Myeloma X1 trial so have now started on Revlimid. I am 59 by the way.

Wish you well David

[eveParticipant]

Hi

I do not think the dosage is the same for all patients!!! It is decided on an individual bases,for example my husband had his main chemo at half dose as he had had kidney problems previously,but they had regenerated to a fairly good level.

As for remission, numbers do not mean anything,!!! You have to go into this knowing all the facts and possible outcome!!.and also the fact that some hospitals have better results than others,also you have to take into account,the type of Myeloma you have,some are more treatable than others. May I suggest you go into back issues on this sight,if you cannot find them under a library section,contact Ellen,I am sure she will point you in the right direction,the number is free at the top of the home page.

Many people decide not to go down the SCT route,they save it for later,many for personal reasons like the wrong time,or children it’s a major surgery on your bloods,and takes around six months to recover,many people gets years of remission,many people do not,it’s a very individual choice,which only you alone can make,as a carer I refused to say yes or no to my husband having SCT,because if anything had gone wrong,I would have felt responsible !!!

My husband achieved 0.00 myeloma cells after 100 days,but it came back within less than 6 months,they say you get half the remission time second time round,so for the last couple of years,it’s been treatment,or wait and see. ,so not good for us.in this time he has become none Secretor plus I consider him high risk,meaning as soon as he stops treatment it comes back,he does not qualify for trials,consultant reluctant to ask on compassionate grounds,plus lot of damage to cell growth.which in its self causes extra damage to different pats of the body,I would have loved to have a crystal ball 3 1/2 years ago.

Knowledge will power and hope will see you through your journey,enjoy something about everyday,and be positive and look for the good in day to day things.Eve

[PhilipandfionaParticipant]

Different drugs, different doses. Just because you get more cyclo orally doesn’t make that a high dose and the melphalan a low dose. 300ml of vodka is a lot more potent than 300ml of beer!

I don’t think you can get an answer to your question. That’s the delight of MM. You can ask averages till your blue in the face, but historic data is just that – historic so doesn’t look at new treatments / methods of care etc, and it only works over the population of MM sufferers.

If the risk of never leaving hospital is 5% for all (seems rather high to me), then that’s one thing. But if you are one of those 5% then your risk is 100%. Population vs personal statistics are a complete area of study in themselves.

My husband was told he’s fit, young, healthy, reacted very well to initial treatment, complete remission. He got 12 months with the SCT. In the next bed to him in the hopsital was a gentleman coming back for his 2nd SCT after 16 years!

Listen to your doctors. Ask for the low down on how you are likely to feel after the SCT, get them to explain it to you as thoroughly and as many times as you need to make up your mind. then do what you feel is best for you, and don’t look back.

good luck x

[rebeccaRParticipant]

Hi, I had my SCT at Xmas and was told SCT deepens the response and therefore gives a longer remission – but no figures quoted – my consultant gave me a strange spiel of “I am sat here like a bookmaker…some people we think will do well and don’t and some people we think will do badly do well!” – we came out with the feeling that like with all things myeloma it’s always a lottery as to how each of us respond and we must learn to be gamblers. It deepens the response merely by being able to kill more MM cells and reduce the minimal residual disease left (if any) after your treatment. It does this by the sheer high dose and toxicity of the melphalan to the extent that it destroys your immune system hence why we have stem cells harvested and put back in. I have kidney impairment and was told my risk of dying from it actually increased to 1 in 20 (in case infections wiped the kidneys out). My initial treatment was velcade/dex which is not known for long remissions (unlike CDT) so SCt was the right choice for me despite the risks – and I am 52. There are some studies now comparing if you get complete remission from intial treatment to hold off SCT until 1st relapse. Unfortunately everyone is different and it will be difficult to get accurate data on how mush longer remission you personally would get from SCT as we are all so different. I know people who have got equally long remission after CDT alone than those who had SCT. The aim of my SCt was to get try and eradicate the minimal residual disease which was .3% before SCT and is still .3% after SCT. My light chains were at 50ish pre SCT and now down to 7 (but still an active ratio unfortunately) but I believe this could have been achieved by adding another agent to my treatment like cyclosophomide but this was deemed unnecessary as I was proceeding to SCT. I am glad I did the SCt as anything that could give you a longer drug free period is worth exploring – 18 months extra drug free sounds good to me. Also, I would always be plagued by “what if” had I not had it done – would my relapse have been longer had I had it done? would I be one of the lucky ones who got 7 yrs? etc. At 71yrs I guess this may be your last shot at SCT so waiting to do it further down the line may not be an option. I believe we have limited treatment options with MM and to me SCT counts as one so, for me, I did not want to miss out on an option and had to fight to get it done with my kidney function. I am totally back to normal now, no fatigue, fitness levels restored. For me it was worth the time/risks although my results are disappointing – I am satisfied that I tried all I could and that gives me a lot of peace of mind. Good luck with your decision and do make sure you know exactly what type of response you have got after CDT is complete eg plasma cells left in bone marrow, paraprotein, light chains – if they are all not classed as stringent complete remission then Sct may get you to that point? Good luck,

Rebecca

[dxsParticipant]

Thanks to Tony, David B., Eve, Fiona and Rebecca for their responses so far. One of the things I have found out in researching myeloma survival rates is that 47% of newly-diagnosed patients can expect to live 5 years (Cancer Research UK) and that is what my consultant haematologist tells me as well. One of the points that hit home (courtesy of my daughter who had cancer) is that with an extra 18 months of remission with SCT, you effectively can write off 6 months of that because you’ll be in recovery. Do not underestimate the length of the recovery period. Reading these pages I was struck by one person’s experience of being perpetually tired 11 months after undergoing SCT. Unusual perhaps but I think you must factor in the length of the recovery period and limitations on what you can do before reaching a decision.

Clearly at my age, it’s now or never to have SCT which is why I’m going into the numbers angle very carefully. Whilst I appreciate that the evidence shows that std induction treatment followed by HDT and (Autologous) SCT gives the best result, one must weigh up the pros and cons very carefully. As my wife points out, new drugs are being developed all the time so if I don’t have SCT, there will be further options when my remission ends. One can also hope for the possibility that NICE will accept consolidation and maintenance treatment in the future after your induction treatment ends. (After all, they licensed some anti-cancer drug last year which only gave another 4 months life expectancy.) Reading this forum, I am beginning to see that treatment is a postcode lottery: some patients are accepted into a clinical trial, which seems to get better results, and others have an induction treatment of 6 months whereas my 18 weeks is 4 1/2 months. Final comment about the mortality rate of 5% for patients undergoing SCT: I’ve seen on a U.S. website that the mortality rate for this is 1-5% so 5% in the UK would seem to be in the ballpark as they say. (And they claim the mortality rate is 20-30% if you have a SCT with a donor rather than your own stem cells.) As my sister is a doctor in the U.S. I hope to publish whatever she can find out. Regards to all. David

[rebeccaRParticipant]

Hi David, whilst I’ve been on the forum I have read of people always feeling tired long after 11 months after SCT – sometimes years – but I do wonder if we attribute everything to SCt when you may have felt tired anyway from often 6 months of enduring chemo and the effect that has on the body/mind. Lots of cancer literature speak of “fatigue” from chemo which can last years and they are not meaning only those who have had the high dose SCT. I have pushed myself as hard as I can through recovery,the more exercise I have done the better and less fatigued I became until I am back to normal levels. I also think exercising and feeling normal lifted me up an awful lot mentally. But I am relatively young and not hampered by bone pain. I spoke to one gentleman pre SCT and he felt if you only got 18 months or less from the SCt it wasn’t worth going through such a procedure and recovery – another opinion – as he felt it took a year to properly recover from it. SCT is emotionally draining and I found this to be the hardest part of all because afterwards, without any energy, it is easy to go downwards mentally and become depressed. They talk to you about this in hospital as it is recognised that after SCT depression can easily set in. For a year I struggled treatment/kidney probs to get to SCT as tho’ everything would go away after it – I never thought of anything but a total success but unfortunately you just go onto a different twist of the rollercoaster – having bloods done every 2 months and “watching and waiting” which I think is equally hard as you are not being proactive with treatment – just waiting. Whilst maintenance is only a “randomised” process for those trials (I was excluded from a trial as they didn’t think my kidneys would recover sufficiently for an SCT) it is worth remembering that as your numbers rise you will go through the treatments which will eventually put you on “maintenance” drugs until they stop working. It is a lot to think about – for me it wasn’t as I am too young – would I ask one of my own parents to go through with it with all the new drugs? probably not unless they had poor cytogenics (which I have also and may explain my disappointing results). Take care and find peace with whatever you decide.

Rebecca

[keithmtParticipant]

My consultant wouldn’t put a number on the benefits of SCT other than to say that evidence showed a definite increase in remission time. That was good enough for me, I’m not sure that specific numbers have any real meaning as it’s all a bit of a guessing game being that we’re all different.

As for Melphalan dosage, if I remember correctly, I had a kidney test (series of blood tests over a few hours after an injection of something radioactive) which determined the dose of Melphalan I’d get. No idea what the actual dosage was but when they gave it to me they said it was very powerful and would kill off my bone marrow within 20 minutes.

Best regards

Keith

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