[MrsLParticipant]

Hi, This site has been very useful during the past year but this is my first post, hope it works ok.

I was diagnosed with IgM lambda Myeloma in August 2013 (aged 55). The diagnosis followed months of GP visits with back ache which we eventually found out was the result of 2 compression fractures in my spine. We should also have spotted other symptoms, I had lost weight, had several rib fractures, was very anaemic and was bruising very easily.

At diagnosis my paraprotein level was 66 and so treatment started immediately. I was put on the Myeloma XI trial, and received Revlimid, cyclophosamide and dexamethasone. I know some people have dreadful side effects on this treatment but I was lucky and although I was very anaemic I managed to carry on with my life quite well, even having a holiday to France. After 6 cycles I had achieved a ‘very good partial response’ with my paraprotein down to 3 and so I had an autologous stem cell transplant in May. I found the forum very useful in preparing for my stay in St James’, Leeds. As everyone knows the SCT is not a pleasant experience and I was very sick but I think I was lucky compared to many as I didn’t get mucositis, which I had been dreading, and I was back home on day 18. I have recovered quite quickly and am almost back to normal, slightly anaemic and still some back pain, but I have put on weight, got more energy and even grown hair.
Last week I saw my consultant for the results of my 100 day tests. Unfortunately they were not as good as we had hoped, my paraprotein is at 2 and I still have ‘minimal disease’ present in my bone marrow (0.34%). I believe if they both stay at these levels I will classed as in partial remission. Also I was not selected for the maintenance leg of the Myeloma XI trial. All of this has left me feeling down especially after reading the latest report on this web site which indicates maintenance does prolong remission. I know lots of you out there are on maintenance and wondered are you all on the trial or do some hospitals offer maintenance to all patients. I have even looked into paying for it privately but estimate it will be around £4000 a month!
Sorry for the length of this post and also just to say I am grateful for the treatment I have received, that I am still here and feeling well. I have been told many people feel down post SCT, I handled the original diagnosis and year of treatment well, just got on with it but now I feel I am not doing anything to fight the disease, just waiting for it to come back. I am sure I will pick myself up and get on with life again, no other choice really.

[dickbParticipant]

Hi there, just read your post and I think you can still be optimistic about your future. Like you I had my SCT, prior to it my IgG had fallen from 52 to 36. I fortunately live in Germany and unlike the UK, they still did the SCT despite my proteins being way above acceptable levels in the UK. Post SCT my IgG had fallen to 24. Since February, they have been stable at about that level. I don’t know about Myeloma in my Bone Marrow because I refused to have a BMB when they wanted to do it – here in Germany it’s at 4 weeks post SCT. To me it was a pointless exercise and couldn’t tell them anything more than they already knew. The medics also wanted to do a tandem SCT and again I refused, my reason was that the first one hadn’t work so why should the second. I went for a second opinion and the consultant – one of the top 3 MM specialists in Germany agreed with my conclusion and so agreed the best thing was to do nothing.

So, here I am, I don’t have maintenance. I only take anti bacterial and anti virral drugs. I go for a monthly blood test and Zometa infusion and that’s it. Like you, we were devestated when the results came back showing such a poor response to SCT but now, I feel good, I look healthy, I don’t take any painkillers and I don’t feel that anything is wrong. The MM is still there of course and will make a comeback but I don’t worry about it now and just concentrate on having some sort of normality. Not everyone has a full remission and not having one is definately not the end of the world. There are plenty who have only a partial and live for a fair amount of time after, for example, the Lady who runs the support group here has a IgG of around 26. Her SCT was at least 11 years ago. So, time for you to crack on and show the MM who is in charge.

[meganjaneParticipant]

Hello,

Everyone is different on their MM journey but the 100 day assessment is not necessarily the best response you will get from your SCT. My husband Phil was diagnosed with a PP level of 32. After 6 cycles of velcade-dex-dox on the PADIMAC trial his pp was down to 5. At the 100 day assessment after a SCT they had dropped to 3. They continued to go down though and 7 months after the transplant the pp level reached 0. It is now 21 months post SCT and although Phil’s pp levels are rising he is feeling pretty good most days and there is no need yet for more treatment other than the monthly zometa.

I think it is quite common to feel down after the SCT, it is so hard to know without a crystal ball if maintenance would be the right choice. For my husband he is enjoying the time without having to take medication.

Megan

[rebeccaRParticipant]

Hi Linda, I had my SCT at Xmas (literally) at St James (really hated the food and the freezing room) and it never really did much more for me MRD was the same as before at .3% etc. I was in very good partial remission hoping the SCT would get me SCR but the gamble didn’t work. I wasn’t on a trial so ineligible for maintenance but discussed maintenance with Prof Cooke who made me see maintenance as 1- taking drugs/effects/prolonging treatment when we all want a drug free period 2- it could be viewed as using up a drug before you actually need to use it. Most people never get SCR most people get VGPR and dependant on how your MM is with you this can give you long remissions. There have been people on this site who got SCR but it only lasted 2months..1 year..think Tom was in SCR and is just posting thinking its back after 14 months so…who really knows – this is an individual disease and each of us will not follow the pattern of the stats precisely. When you relapse you will be given maintenance then to keep it at bay so try and enjoy a break from it now. With regards to feeling down look at the post in the under 50s category Life After Transplant and there is a much bigger sharing of thoughts on the Myeloma Beacon US site. I think you will find these posts very helpful and give you thoughts on how to move forward. I have had to work at my mental state these past couple minds with the same discipline I had when undergoing treatment and now feel I have climbed up what was a very slippery slope.

Rebecca

Rebecca

[MrsLParticipant]

Thanks for the replies.

Rebecca, I have looked at the posts on being down post SCT and they were very useful. Good to know I am not the only one who has felt like this and hopefully I too will be able to enjoy getting on with life soon.

Linda

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