This topic contains 22 replies, has 7 voices, and was last updated by 
I was diagnosed with Myeloma in December 2017. My paraprotein value has reduced from 34 to 2.5 after nearly 3 rounds of VDT which is great. 3 more to go. I have now been referred for SCT. The more I read about Myeloma the more confused I get. I get the impression from my Consultant that I really only have two choices of treatment, either the SCT or continuous chemo. I thought that once the pp plateaued then there would be periods when no treatment was necessary although I was told last week that the pp will go straight back up if I stop the chemo. I am suffering with debilitating side effects and all the things I enjoyed, walking, netball, Nordic walking and lots of other outdoor activities are now virtually impossible and I am beginning to feel totally defeated. I am aware of the potential outcomes of the SCT and appreciate there are no guarantees. If I am not suitable or the outcome is not good the thought of continuous chemotherapy fills me with dread. Should this be the case I am seriously considering stopping any further treatment. Has anyone else gone down this road?
thanks
My understanding is that although pp will plateau it will rise again. Once induction treatment has brought the levels down the aim of SCT is to keep them down for a longer period of time. Having chatted to others through various forums it seems that patients are now being offered drugs after SCT as maintenance, to keep the levels down, hopefully for longer.
My husband didn’t respond to treatment initially so it took 12 months to get him ready for SCT. Early indications are that he is now clear of the disease. He started on maintenance drugs last week. So not the drug free future he’d hoped for.
There is a Myeloma UK Facebook group you might like to join. You’ll get lots of different viewpoints on there.
Teresa
I’ve just finished 8 cycles of VMP, and my PP’s have plateaued at 11 which I must say I am disappointed in. I had at least hoped it would get down to a single figure. There has been no mention of continuing treatment.
I understood the maximum Velcade one can have is 12 cycles (NICE protocols ) Also that maintenance is not approved in the UK unless you’re on a trial.
I would be interested to hear how you’re getting maintenance offered and which hospital you are at.
susie
Hi – Whikst maintenance is only a given when on a trial when I discussed treatment options st 1st relapse (tho not there yet!) I was led to believe I would be on low dose thalidomide or say revlimid until the treatment stopped working – which is basically the same as maintenance. Whilst we do not get offered maintenance up front in the Uk (unless on a trial) we will get it at some point down the line as a treatment option in its own right. You could argue getting it up front is using up an option available sooner rather than later although I recognise the research that highlights it is more effective in combo with 1st treatment – either way we will get it at some point
HI Susie,
My husband is being treated in Southampton. Although VTD got the levels of PP’s & Light chains down to undetectable in his blood, his Myeloma was still showing in his bone marrow. He then had two cycles of Cyclophosphamide whilst his consultant planned the next stage. He applied for (and got) Ixazomib, Revlimid and Dex, not on a trial as far as we know but perhaps for compassionate reasons. After 3 cycles of this my husbands bmb showed lower results of plasma cells enabling him to go for SCT.
He is now back on lower doses of IRD as maintenance,
Teresa
Hi, thanks for your responses. I have only just felt able to start researching myeloma as I think I have been in denial till now. Not sure the research is a good idea as beginning to agree that a little knowledge is dangerous but needs must. My consultant told me that the SCT was my best hope of a drug free period of time but then I picked up from somewhere that others were still on chemo post SCT which made me think why bother with the SCT. It’s early days yet as still waiting for my initial appointment about the SCT but will just have to wait and see what happens.
thanks again for your replies- interesting
Anne
Hi Teresa
That’s really interesting and I shall bear it in mind when I next require treatment, which I hope will be a long time from now.
I’ve heard good things about Southampton Hospital so sounds though your hubby is getting the best care.
I wish him all the best
susie
Clarkie,
Can I say well done you on getting your paraprotein don that far and only after 3 cycles . My dad aged 72 diagnosed jan 2018 , has had 4 cycles so far, his paraprotein has got down to 4 so a good partial response . They have stopped his treatment at the mo because he is soo so weak in his legs and can hardly walk. Can I ask how old you are . Are you in any pain lying down at night as this is when my dads pain increases. He has been put forward to the marsden for sct and we hope he is fit for it as don’t see many other choices and could get a good few years of treatment and symptom free.
Do you have anybody living with you , How do you cope ?
Hi Jenny,
Sorry to hear your Dad is so unwell. I suffer from aches rather than pain if that makes any sense and yes it is worse in the night. I was as fit as a fiddle before diagnosis- found in a routine blood test – but now feel everything is falling apart. My hips, legs, arms and shoulders ache all the time which is very debilitating. I am told by my oncology nurse that this is one of the recognised side effects and there is nothing they can do about it. I also get very dizzy, feels like cotton wool in my head continually moving around which can last for days again recognised side effect. I finish my 3rd round on Wednesday and start 4th on Thursday. I am 66 and live alone so it’s very difficult to cope. I now have to drive to the local supermarket although friends and family are really supportive. My social life has dwindled to virtually nothing which is an added pressure. I have got an appointment on 22nd June about a SCT. My Consultant has also referred me to the team’s pyschologist to see if this helps
Anne
Hi Anne,
Thank you for responding back, it must be a brave thing to start to do research for yourself & I can understand why one might not want to. My dad is not computer literate, and as I am very interested in his illness and welfare plus I am a nurse I am even more interested in this. Although not in haematology , I can relay info back to my dad. Like you , he lives alone and desperately needs his family at the mo for shopping , cooking etc. I’m glad you have family and friends nearby too as it must be very difficult for those who don’t. It is a very debilitating illness and again like you right now my dads life has been turned upseide down, he is just praying and hoping in time, that he can enjoy some of the things he used to do as I’m sure you are also waiting in anticipation for that day too.
Teresa,
Has your husband had SCT then ?, how was it for him and what was the most difficult part? I heard somebody say it’s equivilent to open heart surgery the effect it has on your body ?
Hi,
Yes. my husband has his SCT in January. The staff kept him informed of procedures and how he would feel every step of the way. For example, they told him when he might develop a sore throat for which they supply mouth washes as a prevention but can help if you do suffer. Any nausea is kept at bay and they warned him when he would begin to feel wiped out (the worst of this lasted 2 days). He lost interest in tv and reading during the second week but started to pick up in the third week.
He complained mostly about being hooked up to a drip the whole time and having his obs taken every 4 hours as he didn’t sleep well. He was diagnose with flu a couple of days after having his cells back so he was having iv antibiotics and fluids alongside potassium and other things.
Teresa
Hi Teresa,
Thank you for getting back to me, this site is fantastic , it gives you a good insight to how it is for some people and how it can be for others with treatment to come. I’m glad your hubby is doing ok since his SCT and didn’t find it all too traumatic and will still be recovering slowly but surely I take it.
It is also reassuring for me to show my dad some of these emails and how sct is probably the best way forward for longevity. I have heard it isn’t so bad from a couple of people now so I feel more positive although I know everybody is different and it is still very risky of infections to occur but there are risks with all of the treatments. Hope you’ve had a good day !
Best wishes
Jennifer
When Revlimid stopped working for me in late 2017, I was relieved as I had too much fatigue and weakness, and too much nausea and was ready to die. However, I got talked in to, and it took a lot of persuading, trying Daratumummb (Darzalex) infusions which are given weekly for nine weeks, every other week for three more months, and then once a month until it no longer works. This might be of no use to you as I live in the States and my cancer is the kappa/lambda light chain variety. However I’ll go on a bit in case it might offer you encouragement because the treatment has been surprisingly successful, and as far as infusion therapies go, the side effects are pretty mild, certainly not intolerable to the extent I found Revlimid and dexamethasone to be.
When I stopped taking revlimid/dex my light chain numbers were very high, my kidneys were failing and I was expected to live less than six months. Daratumumab has brought the numbers down within normal ranges and my kidney function is close to normal. I have completed twelve infusions. Since it helps only 40% of those who try it, I am indeed lucky. I have reached the point where I am considering terminating the treatment because six hours trapped to an IV this frequently is difficult to accept, and, as with the revlimid, the fatigue is horribly difficult. I’m trying to decide whether I would have a better summer with no more infusions. Perhaps I’d recover some energy. Perhaps the myeloma would climb right back.
I hope that this is not completely irrelevant to your situation and that the drug is available to you. I know that the UK and the US are not on the same page with much of this research. It makes me very glad that I refused the stem cell transfer which I had been encouraged to do.
Best wishes,
Michael
Hi all, hope you are ok. I have had a bad chest infection and chemo was suspended for a couple of weeks but back on track now. I am just about to complete round 4 and two more to go. My paraproteins are down to 1.8 which is great and I have an appointment on 22nd June about a stem cell transplant. I had a meeting with my Consultant on Monday and mentioned to her about the discussion on this forum about continuous treatment after a Stem cell. She agreed that there is now a trend towards a maintenance regime and maybe the SCT may not in the future be the gold standard treatment but at the moment it is. I cannot see the point of a SCT, with all that entails, if continuous drugs afterwards are part of the package. My hope is that the SCT will mean a period of time, as long as possible, without drugs as I find the side effects so debilitating. I have decided to carry on with the chemo for two more cycles and see what happens at the initial meeting on the 22nd. If continuous drug treatment is included this will definitely influence my decision.
Anne
Hi clarkie,
How are you? What have you decided to do?
Teresa
You must be logged in to reply to this topic.
