[helenmParticipant]

My husband Dave was diagnosed with Myeloma 13 years ago at 54.  We were very lucky and he had 13 years of monitoring (hospital check ups every 3 months – with a few blips meaning 1 month check ups).  However, in the past 6 months Dave has gradually been getting worse with rib and back pain and the hospital decided he needed to start Chemo.  He is currently on cycle 4 of CTD.  His paraproteins have come down 90% and he has been referred for SCT.  He has good days and bad days.  It doesn’t help that he has always been so active and until last year we were sea kayaking and wild camping and adventuring.  Now he is unable to even walk very far.  Hopefully things will improve.  We are waiting for an appointment at the Beatson in Glasgow for SCT.  Anyone had treatment at this hospital?  Does mobility and pain get better if the myeloma goes into remission?  Any advice from people having gone through SCT?

Look forward to hearing from you

 

Helen

 

[greg777Participant]

Hi Helen,

i think mobility and pain does get better when the myeloma has been put back in its box. I presented with a large blood clot in my leg and over time it definitely got better such that it is to all intents and purposes back to normal. I also had a collapsed vertebrae in my back and now I hardly notice that either. I suppose it stands to reason if you can get rid of what is causing the problem, things started returning to the state they were in beforehand.

I am based virtually the other end of the country so I haven’t been to the Beatson – but I have heard good things about it.

Wishing you and your husband all the very best,

Greg

[helenmParticipant]

Thanks for the info – we now have an appointment next Tuesday at Glasgow to discuss treatment.  I had to laugh – Dave had to go and pick up a letter from the post office because there was £2 to pay on it.  The hospital had only not put any postage on the appointment letter.  They had also sent us another copy of the booklet explaining treatment – we only got one a few weeks ago saying he had been referred.  So – they now owe us £2!  lol  I have just booked him patient transport to get him up there – it is one and half hours from us to hospital.  We are in Dumfries.  That was easy enough – they will pick Dave up from the house – I, however, have to get the bus!

Helen

 

[bandityogaParticipant]

Hi Helen

My husband had his SCT in The Beatson and they were excellent. He was home14 days after he got his stem cells back. He didn’t have too many issues mainly diarrhea and boredom. He took in his laptop to keep him occupied. We live in Dunblane so I was able to visit every day. I stayed 2 night at the hospital when Ian was at his worst, but there is a hotel nearby called The Pond as it is quite a journey from Dumfries. My husband had 18 months remission and we had holidays in Ibiza, Copenhagen, Bermuda, Vienna and Gran Canaria. He felt so much fitter and didn’t take too long to recover from his SCT.and we are now going down the route of TBI suggested by Dr. Soutar at The Beatson who is a specialist in myeloma and a lovely man.

I hope all goes well and your husband gets a long remission.

Maureen

[helenmParticipant]

Thank you so much for the reply and reassurance.  Hopefully Dave will start to feel better in the not too distant future.  I have had a few offers of rooms to stay nearby from internet friends on a site I use.   I will keep the forum updated on Dave’s journey.

Helen

 

[helenmParticipant]

Well – Dave has had his stem cells harvested this week.  Took 3 days as we had a blip on the Tuesday when his white cell count was down.  They gave him an extra injection (costing £5000) and that did the trick – blood count went back up .  We were put up at the Pond hotel (Dave had his accommodation and breakfast paid for – I had my accommodation).  Just a waiting game now for a date to go in.   He is OK but very tired as those 3 days were quite draining!

[helenmParticipant]

Bit of a setback.  He has an infection in his Hickman line. Is in hospital being pumped with all antibiotics known to man (well that is how it feels!).  Has had to have it out and will be reinserted later.  Has appointment in Glasgow 3rd oct to see consultant. Hopefully a date ..   Not a good journey. But hey such is life …

 

[bandityogaParticipant]

Hi Helen, hope Dave gets a date soon for SCT. Ian didn’t get to harvest as his kidneys were poor after receiving cyclphosphomide and his FLC were 5000 and we were told to prepare for the worst, however after 4 weeks in hospital his kidney function improved and he got home yesterday. Still weak as he is anemic but got a referral to see Dr. Soutar at the Beatson before he starts any more treatment. This is one roller coaster ride. Take care of yourself too as it is exhausting

Maureen x

[thendryParticipant]

Hi

I’m a 52year old lady and I’m waiting for a date for my SCT and hopefully it will be before Xmas. I have wedge fractures in my back and I’ve lost 3inches in height. Before I was diagnosed with Myeloma I was very active and walked and exercised every day. I’m getting more mobile at the minute but the mobility in my back still doesn’t feel right and my stomach is extended(the doctors say this is due to my loss in height, and my internal organs have protruded) .

Im hoping that after all this treatment that the wedge fractures in my back will settle and I will be able to return to some form of exercise. If anyone could offer any advice or reassurance that would help me focus on getting back some quality of life that would be great.

Thanks

Tracy

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