New but not new

Hi again Mick Mick 28.12.22 and welcome across to this corner of the Community from our discussion in the New to Community.

There are a number of group members log in from time to time so let’s see them pick up on your post.

Having had 2 Allogenic Stem Cell Transplants so I can testify to the amazing difference this has made in my life.

I will say that, for various reasons not all Myeloma patients go on to have Stem Cell Transplant but I will let the group members to talk to that.

Having been on my journey with 4 cancers over 26 years…… along with other health conditions so I had a little chuckle when you say ‘I have set my consultant a draft agenda for my review meeting’……. I think I have seen over 30 consultants over these years and let’s say I have had a few battles to be heard …… but fold your arms and don’t move until you get answers to your questions.

Hi Mick and welcome to the forum.

You have been through a lot already, and now face... something.

First: the facts.

You are right that the standard response to MGUS or smouldering myeloma is watch and wait. With smouldering, there have been clinical trials into treatments for high risk cases ('high risk' cases are the roughly 25% of patients where there are chromosomal abnormalities) but no treatment for smouldering has yet been approved in the UK. 

You are also correct about the standard treatment for active myeloma. Around 4 months of chemo treatment, stem cell transplant, then a couple more months of chemo. The transplant is not done where there is a comorbidity or where the patient is older (maybe 70 or so).

For example, I have a dodgy heart, so when I had treatment a few years ago, my stem cells were collected but I haven't had a transplant. Still in remission, despite being high risk.

Now going beyond the facts.

You haven't been diagnosed with anything yet, but you seem to be assuming that it is myeloma. That sounds premature to me (although of course you may be showing the classic CRAB symptoms and just haven't mentioned that above). You mention delaying a stem cell transplant, and this sounds even more premature just yet. By the way, delaying it is non standard, and getting a doctor's approval for that could be challenging.

As you have clearly been reading up, please bear in mind that old internet info is out of date: myeloma treatments have been and are improving rapidly, and people can live long, long lives with it now!

Please let us on this forum know how you get on. We are happy to give information, experiences and advice.

All the best!

Thank you for your reply. Sorry I probably should have  added  the following points to the above:

For the past twelve months I have had severe fatigue that got to the point in January where   I was drained both mentally and physically.  This set me on the depression pathway.   When I was asking  about symptons like aches and pains, pins and needles in both hands and feet, loss of appetite ,urology problems i was told that it was linked to anxiety.  

The reviews meetings were firstly with a nurse practitioner, then a doctor and then a nurse practitioner.  When I was asked by the mental health nurse to approach the GP for them rule out a physical reason before I moved on.  I arranged an appointment with the senior partner at the practice and she ran a series of blood tests and even an x ray.  The test that  came back irregular was my  slfc ratio was above 100.  Based on what I have read this ticks a box for treatment based on the SLIM CRAB index.  The ratio needs to be proved by the amount of kappa/lambda ( which is not in my 1st clinical letter) a bone marrow biopsy and full body mri scan.  

I have based my agenda around reading only Macmillan, Myeloma Uk and  the mayo clinic.  As I mentioned to Mike I decided to use an agenda approach to my meeting as it wouid hopefully give me time to discuss my points rather than data.  

From what I have read recent research has found if MRD can be achieved with induction therapy there is an argument to defer the transplant.  Obviously I would be guided by hematologist.  

I am probably being selfish but the past three years have just seems to have been a round of hospital visits and adapting to a new norms.    sorry if this sounds pathetic but with my mouth cancer, my wifes breast cancer disgnosis and sypporting a  friend and family member  through end of life care i think I have become medically numb.  

Are you currently going through treatment or in remission?

Best wishes

Michael 

Hi Michael,

OK. Thanks for the extra info. That does change things a bit.

You have also done even more reading up than I thought!

Yes, if MRD negativity can be achieved from induction then there is less need for a stem cell transplant. I should mention, though, that MRD testing is often not done in the UK (for example, I have never had an MRD test).

I also didn't explain fully why I didn't have a transplant: as well as my heart issue, I didn't want to face a long time recovering at home: I wanted to get on with my life!

You and your family have been through hell! It's far from selfish to not go through a transplant (they are being done less frequently anyway as induction treatment is so good these days), especially when you have been and are helping others.

I was diagnosed at the end of 2022, had treatment over the first of of 2023, and have been in remission since.