[davidainsdaleParticipant]

Hi Taff

Good to hear that you have finished treatment.  I think that all the travelling and hanging around for appointments is pretty tiring without having to cope with myeloma.  Hope that you now have a good long period without further treatment.

I certainly felt tired for quite a while due to the chemo and radiotherapy but life gradually does improve but I found that I had to work hard to keep active and eat well.

Coincidentally, I also went to a wedding just 3 months after my stem cell transplant in 2014. This was my daughter and we now have a baby granddaughter just 5 months old.

Hope this helps

David S

[taffdParticipant]

Thanks David and congrats on your Granddaughter. They’re a joy.

[taffdParticipant]

Well, for the last 2 or 3 days I’ve been getting severe pain in my left shoulder/upper arm, occasionally right down to the hand and up into my neck and face. 9 on a scale of 1 – 10. Unable to move upper arm.

X-rays today showed no plasmacytoma or bone lesions – will have an MRI in the next few days.

Both slow release and oral morphine doses doubled with possible steroids if it hasn’t calmed in a week. Everybody unsure of cause as yet.

Ent ded though.

[davidainsdaleParticipant]

Hi Taff

Sorry to here that you are suffering, it sounds like a real roller coaster up one day and down the next.

It is often difficult to know if these periods of aches and pains are due to the myeloma, the side effects of treatment, old age, normal ailments that everyone catches or in my case self inflicted from too  much DIY.

I hope they can sort you out quickly and that good health returns.

All the best.
David S

[taffdParticipant]

Turns out my shoulder/arm pain was due to calcific tendonitis – a build up of calcium in the tendon. Apparently the painful phase is when the body starts to reabsorb the calcium and it can last months.

What they did was give me a local anaesthetic then using ultrasound, aspirate the calcium, which has a consistency of toothpaste at this stage, then inject a corticosteroid.

Pain relief was virtually instantaneous and while I’ll need physio, I already have a lot more movement of the arm. Have been able to stop oramorph.

So, nothing to do with the myeloma, I’m still in remission it seems.

And I ent ded.

[taffdParticipant]

Quick update –

Had my 3 month post-treatment review today: bloods magnificent, apparently I achieved a complete response. Still receiving monthly biphosphonates.

Feeling much better generally, though still with altered taste, variable appetite, fairly mild neuropathy. Also, still weak but getting stronger. Shoulder ok now, got full movement. Background pain in back and pelvis/thighs but well controlled.

And I ent ded.

Best regards to all

[taffdParticipant]

Latest update at 6 months after finishing chemo – no trace of paraprotein, myeloma still in complete remission.

Ironically, if I’d have had a stem cell transplant, I wouldn’t have survived the radiation colitis and subsequent sepsis.

I’m struggling to eat enough, with having altered taste and a restricted diet due to the colostomy. And unfortunately, while I don’t think about the cancer, I can’t get away from the colostomy. It’s there constantly, requiring attention day and night and I can’t do anything or go anywhere without considering its implications. Not a whine, simply the facts of it.

Wish you all well.

 

Regards to all

Taff

[taffdParticipant]

Colostomy had to be redone on Monday due to it closing up and retracting. Very sore post-op, need another couple of months healing.

 

Regards

Taff

[taffdParticipant]

Another update – stoma has almost closed over again and needs to be redone under general anaesthetic. Awaiting appointment.

All these stoma problems keep knocking me back to square one and I remain very weak and unable to eat properly.

But I still ent ded, which is nice.

 

Regards

Taff

[davidainsdaleParticipant]

Hi Taff

Sorry to hear that you are having problems at the moment. Sounds like you are having a bit of a rough time of it.

Hope they can sort you out soon and quickly get you back on the road to recovery.

All the best

David S

[taffdParticipant]

Thanks David, I just hope this is not going to be an ongoing thing, having to have it redone every couple of months. I’m obviously prone to scarring/adhesions, which is the reason for the stoma retracting and then closing. And of course, each new procedure leads to more scarring.

Again, thanks for your post,

 

Regards

Taff

[taffdParticipant]

Had stoma redone today, feeling somewhat bruised. Ent ded though, which is nice.

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