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Just found out I have MGUS/myeloma...

(9 Posts)
Teecup Thu 29-Sep-16 18:56:19

I'm trying my hardest to be strong, but I'm so scared.

Does anyone have any experiences they can share?

Knowledge is power and all that...

Enjoyingtheattention Sat 01-Oct-16 23:07:15

Teecup, I'm so sorry to hear your diagnosis. My dh has multiple myeloma...diagnosed 5 years ago. (bench Jones, also known as light chain). He had chemo followed by a stem cell transplant to put him in remission til now. He's just started treatment again as he is beginning to relapse but his regular monitoring has picked it up very early so we'll get it in control before it does any significant damage (his kidneys were damaged as were some vertebrae last time, as we never realised he was unwell)
Myeloma is one of the cancers that treatments have really progressed with...fingers crossed your MGUS won't ever progress further.
Any questions, just ask x

Teecup Thu 06-Oct-16 19:55:50

Hi enjoyingtheattention and thanks for your reply.

I'm sorry to hear about your DH. Can I ask about how he was diagnosed? What were his initial symptoms? Has he been able to carry on working? I'm a single mum of two young children and I really don't know how I'm going to manage if I have to stop working confused

Also, has he had a bone marrow biopsy? I'm booked in to have one in a couple of weeks and I'm not looking forward to it...

Please do let me know if you'd rather I pm'd you smile

lovepigeon Thu 06-Oct-16 20:21:17

Hi Teecup
Sorry for you news.
My gradfather was diagnosed with MM about 10 years ago (aged about 70).
We were devastated as all the stats were not promising.. well 10 years on he is doing great and its more like having a chronic condition. He got thalidomide for first few years and then switched to revlimid which he is still on, he also gets steroids sometimes and low dose antibiotics to prevent infections. The only side effects from the thalidomide/revlimid are tiredness, numbness/tingling in hands and toes. He wears compression stockings to prevent dvt and did get one last year which was sorted with some anticoags in hospital. His condition is well controlled with his gamma/kappa peak (cant remember name) staying low. Due to his age he was not able to have stem cell transplant. There are also heaps of other treatments he can move onto in future.
In terms of looking after children he looks after my neice all the time(she is now 6) and is able to do all kinds with her - seaside, museum etc.
He is more tired since diagnosis but obviously old age plays a part too, I think main other symptom is back pain.
In the years before diagnosed he had chronic cough, b12 anemia, bone pain, tiredness.
Let me know if you want any info, I work in clinical trials and MM is such a promising area with loads of potential new treatments in development.

Teecup Fri 07-Oct-16 19:24:16

Hi lovepigeon and thanks for your reply. It's good to hear that your grandad is doing better than originally anticipated.
I'm definitely interested in any information you might have...is it ok to pm you?

Enjoyingtheattention Fri 07-Oct-16 23:51:16

Teacup, dh was originally diagnosed as he had been having very bad back pain and then had a pathological fracture of his collar bone putting on a t shirt... X-rays showed possible cancer and this was confirmed by loads of scans and a bone marrow biopsy. His kidneys were also in failure but have since recovered following some initial dialysis.
He's had a few bone marrow biopsies to date, they sedate you for this. He has been unfortunate in that he has had some damage to his vertebrae as a consequence of his condition, so is on long term sick from work. He is a house husband while I now work full time.
But this isn't everyones experience of the condition...like all cancers, each has variations.

Had we known that he had the condition, a lot of the damage could possibly have been prevented ..it could have been rumbling away for some time without us knowing and him being a symptomatic. Which makes things so much more positive for you as you can be monitored regularly.

Best of luck

Twodogsandahooch Sun 09-Oct-16 19:17:47

Teecup - have you been told whether you have MGUS or myeloma?

Teecup Tue 11-Oct-16 08:33:41

I don't know Twodogs! It's not been made clear to me yet. Both have been mentioned, and I've been referred to a Myeloma clinic/specialist.

Twodogsandahooch Tue 11-Oct-16 08:37:04

Ok. I wouldn't read too much until you have been told. MGUS is very common and most cases do not progress into myeloma and so you might worry yourself unnecessarily. Thinking of you.

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