[grenoladParticipant]

Hi all,

I was diagnosed (stage 2) in September last year (49 years old) and have gone through my induction treatment up till January/February this year, poised for my stem cell replacement. The corona virus mayhem has meant that my stem cell replacement has been put on hold, along with remedial work I was to have on my spine. As maintenance, I have been left on 50mg (twice daily) of Thalidomide only. I have had the first month, and wait for the results of my blood tests.

The question I have is, will the delaying of my stem cell replacement will have an impact on my long term survival, is there a golden window to have it? or as long as you keep your ‘levels’ under control it doesn’t matter if you have it now or in a year’s time. I would be interested if anyone has been on a maintenance drug for a substantial time before they had a stem cell transplant? and whether they felt the wait had an impact?

I would appreciate any response you have. As with all, this is a very stressful time. It would be normally very stressful coming to terms with a diagnosis, but the coronavirus has sent things to another level of stress.

Best wishes and love to all.

John.

[rebeccaRParticipant]

Hi John, This indeed is a very worrying time to have to cope with covid pandemic and a Mm diagnosis. I was diagnosed at 50 but with severe kidney reduction – I was on velcade/dex only due to kidneys (and this treatment alone is not known for a long remission) I SCTd 4 months after finishing induction. I posed the question of further delaying Sct until 1st relapse as I felt so well etc off treatment. For me, SCT was always a gamble as kidneys were very low and was told, for me, to SCT then as in 1st relapse my kidneys may be worse and I may not be as fit/able to SCT. Fair point – but unless you have another comorbidity that comes into play – consider SCT as just another treatment option along with many others you have. At the time of mine they were trialling harvesting the stem cells of patients to be used in SCT at 1st relapse. I believe this is because whilst SCT in the UK is considered the “gold” standard of treatment – as more and better treatment options become available to us it is unlikely to remain the gold standard. Thalidomide will hopefully keep your figures the same indefinately and if it doesn’t they will add to it or put you on revlimid maintenance. Often older people choose not to SCT and live well on maintenance. At 49 you are in a good position in that your age and fitness/organ fitness should be excellent to withstand and benefit from many treatment options – of which SCT will be one perhaps at some point. I would worry much more about having an SCT now with covid around as your immune system will be so susceptible to catch anything. There are many people out there who have had fantastically long remissions on the induction therapy alone but as MM is so individual/unique it is hard to study when best to SCT …or not to SCT at all. As treatment advances I think we will look back on SCT at first stage as barbaric (tho totally doable to go through) and a sledgehammer to crack a nut – but the “gold standard” title was earned when treatment options were much more limited and less advanced/targeted – so sledgehammer needed then but a small ? now. What was your induction combination and have you achieved a complete response from it to date?
Rebecca

[grenoladParticipant]

Hi Rebecca,
Thank you so much for your reply. It has given me quite a lot of comfort in this stressful time. I agree about the sledgehammer aspect of the so called gold standard of SCT. There must be a better option than melphalan? Regarding your questions, I started on VTD (Velcade,Thalidomide and Dexamethasone) Sept 19, with 10 rounds of full strength Radiotherapy. I completed four cycles of VTD. My ‘proteins’ on admission were 34 and reduced down to zero by the end of the 4th cycle (although they were zero by the third) I had no other issues such as renal problems etc. I just had pain in my spine. I am waiting to have vertebroplasty on the parts of my spine that were compromised by the myeloma lesions. I am currently on Thalidomide 50mg a day (taken in the evening) APOLOGIES FOR MY MISTAKE IN THE PREVIOUS POST! I hope to keep myself healthy and ready for SCT when it is deemed safe to have it, either this year or next. What has consoled me, through additional reading and help of people such as yourself, is that I am not going to be worse off by delaying my SCT.
Best wishes to you Rebecca and to all.
John

• This reply was modified 4 years, 7 months ago by  grenolad.

[rebeccaRParticipant]

Hi John,
You have achieved fantastic results on induction, sorry to hear about the bone issues. The fact that you have got such a good response is hopefully an indication that your MM is easy to treat and you will have long a remission. The fact that they are not wanting to to do a double Sct is also an indication you do not have any high risk translocations also? Another plus on your side. Young and fit – another tick. At diagnosis it seems so bleak, doom and more doom but if you search for the positives and the stories that buck the trend (that’s always referred to) you will see light and hope – recognising you and your Mm is unique so your response can be equally fantastically unique (in a good way only!). I mentioned in my post the SCT urgency for me was due to VD without a third agent not known for long remission. In the waiting room I met an elderly lady who had a very long remission with just VD and as her numbers were starting to rise they were giving it her again because she’d had such a fab response the first time round! Often when we first read up on things we read the “trends” but when you dig deeper and read “all the scale” it really doesn’t appear to be much more scientific than rolling a dice and hoping Lady Luck is on your side and you have enough chips for a long game! I like to think if I live life well and stay fit to boot with a bit of Lady Luck I’ll be at the table for the long haul….obviously not science based but how you cope mentally and live with it is the real battle that you can definately win. Seek out the good stuff and dismiss the rest as not applicable to you and yours – as you are unique – and you’ll do alright.
Take care
Rebecca

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