[claire87Participant]

Hello everyone,

It has taken a while to get to this point to post on here. I have been reading about others journeys since my husbands diagnosis in January. At diagnosis his kappa light chains were over  20,000. He had anaemia and creatinine levels of 3.2 9MG/DL.  He is on cycle five of cybord (cyclophosphamide, velcade and dex).

 

we are currently living in the US being treated at Maryland oncology  by a great specialist in myeloma. In two weeks time we have to relocate back to the UK  as my company will no longer pay for his treatment. His light chains  where down to 56 at the last blood test.  I think the plan will be a stem cell transplant in the coming months.  He will be seeing a consultant in York who I believe will then refer him to Leeds for the transplant.  He has been in contact with Professor Cook in Leeds who is the specialist in myeloma.

 

I guess I am reaching out to find out what to expect in the coming months and if there is anyone out there with a similar case to him. Multiple myeloma seems to be so different in everyone, it is difficult to find out information.

 

Multiple myeloma seems to be so different in everyone, it is difficult to find out information.

 

His US oncologist highly recommends  him to have maintenance after the transplant. However, I don’t think this is done as commonly in the UK as it is here in the US. His FISH results were intermediate with t(4:14) and del(p13).

 

He is currently getting his head around this new normal with the fatigue, nausea, sleepless night’s and restless legs brackets are an hour ago s he is currently getting his head around this ‘new normal’ with the fatigue, nausea, sleepless night’s and restless legs (wonderful dex).

 

Thank you for taking time to read this.

• This topic was modified 8 years, 6 months ago by  claire87.

[greeners12Participant]

My husband was diagnosed 13 months ago, with back pain that was found to be 5 fractures to his vertebrae,  it is a very long journey with everyone being different,  my husband had 10 months of cdt and had a stem cell transplant in March, which I can only describe as brutal. He still is in a lot of pain from his back,  and is slowly recovering from his sct.

i hope things go well for your husband you can only be guided by the medical team and take each day as it comes, good or bad.

[davidainsdaleParticipant]

Hi Claire

Sorry to hear that your husband has myeloma.

My story is similar to that above, it all started with a bad back and then wheel chair for six months. Now 2 years post SCT and quality of life is much improved.

Myeloma UK has lots of information available. I found that going to the patient information days really helpful, especially talking to other patients. There are lots of local support groups in the UK and you might find these a useful source of advice as well. It was 8 months before I spoke to anyone who had myeloma and just being able to compare notes with someone else is so worthwhile.

Good luck with your move to the UK. My daughter lives in York, a really nice place but busy in the summer. The sun is shining in Liverpool today here on the other side of the Pennines so I shall sign off to do some gardening.

Hope this helps.

David

[rebeccaRParticipant]

Hi Claire, I went to see Prof Cook he is very renowned, tells it to you straight in a very personable manner and I had my SCT there 2 years ago last xmas. I have high risk cytogenics but no maintenance as I believe the only way to get maintenance here in the UK is if your treatment is part of a trial – mine wasn’t. You are in a great position with your light chains even now so it all seems quite treatable for you. MM is very individual – I had only 1120 light chains but it near destroyed my kidneys so I guess take heart that despite the cytogenics it has responded really well to treatment and I am sure being US based you will know that velcade can balance out some adverse cytogenics. In remission and drug free MM is not really restricting my life now so life can resume as near normal tho it’s hard to believe this when you are caught up with treatment and side effects etc. Good luck with it all – and the move – try not to get too frustrated with our treatment options over here as they do appear to come a very poor second to the extent of drugs/combinations/maintenance options in the US… but then it is a free, inclusive, NHS.

Rebecca

[claire87Participant]

Many thanks to all for replying. It really helps to know there are others out there. I will certainly look into support groups and info days when we get back. I guess all will be much clearer once we are there and hear what the UK doctors have to say. We will appreciate the NHS, although there are much less options available, it is much easier to access, without all the stress of medical insurance!!

 

Rebecca, thanks for the much needed light at the end of the tunnel, like you say, it is really hard to believe right now that life for my husband can get back to near normal. I feel much more positive reading your post!

 

Take care everyone and I will post when on your side of the pond…

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