Not knowing how long will I live

Hi Deejay,

Welcome to this corner of the forum, although I’m really sorry for the reason you had to join.

Personally, I have found the description of myeloma as incurable the hardest thing to deal with about the whole process. I went through a long patch of not being able to get out of my head the image of a sword of Damocles hanging over me. I think it is an emotional process you have to go through, until you reach an acceptance phase. This is not to say that you in any way like your situation, but you can accept it for what it is - something you can’t control.

Treatments are improving all the time and there is genuine hope that one day myeloma will no longer be viewed as incurable. On diagnosis, my consultant said to me that it was his job to keep me alive long enough that I die of something else. It’s not exactly what I wanted to hear at age 36 but it kind of works for me. 

The fact that treatment is going well for you is definitely the main thing to hold onto. That’s the most important thing. People call it staying in the moment - very hard to do, but I think it’s the best way forward with something like myeloma.

Hope this helps

Greg

I am 18 months post diagnosis, and empathise with you.  I suspect that this is an issue for all of us diagnosed with myeloma.  I agree with all Greg has said.

Myeloma is a collection of related diseases, but they don't develop in the same ways so there is such a variation in responses to drugs and in symptoms, so predicting survival is notoriously inaccurate, especially in an era when research is producing significant life extending therapies verging on making myeloma a chronic, not incurable condition.  The reality for all of us alive with myeloma now is that there are no OS statistics that are relevant to us as individuals.

I've found  it helpful to be an informed patient  ,and to meet with  other people with myeloma, both at s local support group where other members have lived with myeloma for up to 15 years and at myeloma UK patient information days. I always come back feeling positive and hopeful. 

Hello I too am around 18 months post diagnosis. 6 months induction followed by STC in Feb this year. I feel very well now and think that I am definitely getting stronger physically  all the time. It is that word incurable that lurks in the back of your mind and torments you when you let it do so! I had my first appointment  this week back at my local Haematology department with a new consultant following my discharge from UCH. I had been feeling very nervous about the whole thing and very disappointed  that my previous consultant  had left without me seeing him again. Well he seemed so laid back about the whole thing that I came out thinking that I just have to change my mental attitude  about this. Yes I'm on watch and wait, Yes one day it will rear its ugly head again but no one knows when. There is no point me dwelling on it so much! He assures me that there are plenty of treatments  that will be available when needed to get it back under control. I need to go forward with a positive outlook and make the most of this treatment free time. I will endeavour to do so. Good luck to all fellow travellers! Suex

Gosh there a lot of us on here diagnoses just over a year ago!

i was diagnosed in August 2018 and have had induction followed by SCT in February this year. 

It all appears to have gone very well so far (knock on everything wooden within reach) and I remain in remission. 

The incurable thing definitely weighs on my mind and I do find myself waking up in the middle of the night one or two times a week dwelling on this fact.

That said, my consultant seems very optimistic, and has said that although I harvested enough stem cells for two transplants, he doesn’t expect that I will use the second batch, as the treatment regimen will have changed by the time I relapse, such is the pace of change in treatments for this disease.

I also went to an evening information session on myeloma with a presentation by a consultant about the latest immunology developments, and other treatments.  I asked him if myeloma was unusual in that there appear to be so many new treatments in development and on the horizon, and his answer was yes - it is indeed unusual.

We have been diagnosed at an pivotal moment for this disease, in that the current treatments may keep us in alive long enough so that new treatments will come along and prolong our lives still further, and so on.  

Hi Greg,

Thank you and to everyone who also replied, it was so helpful.

I'm now very chilled about having myeloma but I have had it since March, so I have had plenty of time to process everything.

I have had 5 cycles and my level at the start of cycle 5 was 1. when diagnosed it was 18.

This Sunday I go to the hospital until Tuesday for the more intensive chemo treatment ready for my stem cell harvesting. So let the fun begin!

All the very best and hope all is going well for you?

Steve

Hi Steve,

Great to hear from you and I’m really pleased that things have been going well. I hope everything goes smoothly with the SCT. I have included a link to the SCT part of the forum, in case you wanted to see if you can connect with people going through the exact same thing as you at the same time - Stem Cell Transplants for Blood Cancers - Forum.

The procedure is tough and you can feel rough for a bit, but I always had in mind that it was worth it to give you the longest period of remission possible, so here’s hoping it all goes really well and does what it needs to do.

I’m doing well thanks, 4 years past my auto-SCT now and all going well.

Greg

Seeing as you're post SCT ,Gregg,any ball park figure time wise when you felt your immune system was back up and running? I should have been transplanted by now but had to have a stomach op that's set my treatment back. Been told to give it six months before I can go abroad after SCT.

Hi Steve,

After the auto, I would say it was 3 months before I started feeling like myself again. With an SCT, it is like pressing a reset button, so it can take some time for the immune system to get familiar with what it should be doing again. I then went onto having an allo transplant and the recovery time was a lot longer for that one - it was more like 12 months before I was feeling better. But it shouldn’t be the same length for an auto.

If there is something you want to do, I would definitely mention it to your medical team, as it’s good to have a goal and sometimes they can be flexible re:timetables for travel when they know it’s something the patient really wants to do.

Hope it all goes really smoothly,

Greg

I had my first auto SCT in February this year and went through the process relatively easily.  By day 37 I felt a great deal better, & later it transpired that by this stage I had had a Complete Response (no paraproteins detected). I went to Crete on day 102 without any problems (did my husband and I the world of good). For me feeling really well corresponded with CR.

I am now 9 months post SCT, superficially very well & taking lenalidomide maintenance. However this is having adverse consequences on my bloods, which have not attained the normal or near normal levels I'd naively thought they would post transplant.  Moreorless everything is slightly out of kilter. Although we may not have symptomatic disease, and I don't, our immune systems are not reset (,or at least mine isn't) to the extent I'd expected.  It's come home to me that I still have myeloma, it's just dormant or being controlled.  However functionally I feel fine and life isn't compromised so I am trying not to be concerned about blood test results, just keeping an eye on them.

Statistics suggest many of us stay in this remissive state for years.

I was diagnosed in August 2018.

Started chemo in September 2018

SCT in April 2019

Currently on consolidation therapy and hopefully on maintenance in December.

The thought of the incurable cancer is alway on my mind, but as others have said - having a positive mindset is key. Attending the Infodays and Support Groups helps me deal with deal with my condition. Today I am 206 days post transplant and it does take time to get back to normal. The only vaccination I am allowed to have is the fl vaccine which I will have early next month. I still feel tired, fatigued, weak, breathless. But I feel I am getting better. 

Since the transplant, I travelled to the Caribbean in September for two weeks - psychologically this was good for me and the family, although there was much apprehension.