[taffdParticipant]

I mentioned quite early on that I didn’t think I’d handle an STC and it was never mentioned again. Luckily, I achieved complete remission with CTD. No mention was made of any sort of maintenance.

I was also lucky in that, had I had a transplant, I wouldn’t have survived the sepsis that developed from radiation colitis.

[taffdParticipant]

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

[taffdParticipant]

I chose not to have an SCT after induction with CTD as I didn’t think I’d cope with it. Lucky. Had I had one, I’d not have survived a subsequent bout of sepsis.

I wish you well for yours.

 

Best Regards

Taff

[taffdParticipant]

When I was diagnosed, two of my sons, after reading about it on the internet, sourced two different sorts of cannabis oil. While I had no moral objections to taking it I decided not to.

Firstly, had I taken it and my condition changed for the better or worse, nobody would have had any idea whether it was the cannabis oil or the medication that was having an effect.

Secondly, there is no guarantee of quality with it. Illegal drugs are usually sold with the intention of making money and the people who produce it are not renowned for their quality control etc

If and when I get to end stage, I might reconsider smoking it if I find it has a therapeutic effect.

Best Regards

Taff

[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]

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

[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]

Well it turned out that my alternate theory was nonsense as things were in the wrong place for it to have occurred and radiation colitis is the official diagnoses.

Stoma has been consistently shrinking, to the point where scar tissue had made it retract completely and the stoma was healing up. Had it redone today and am feeling a bit tender t the moment.

Appetite seems to be coming back and I had toast today for the first time in over 6 months without feeling nauseous. Can’t make up my mind whether I’m getting better or or not. I suppose there’s just ups and downs. Mentally all good, physically, still goosed.

But I stilll ent ded, which is nice.

 

Regards to All

Taff

[taffdParticipant]

Hi kazza, it sounds as if your mum’s on VTD, where she has Velcade where I had cyclophosphomide.

 

Regards

Taff

• This reply was modified 6 years, 8 months ago by  taffd.

[taffdParticipant]

Before I had myeloma confirmed, I’d done a shedload of reading about it. I told my consultant at the beginning that I didn’t fancy a transplant as I didn’t think I’d be able to handle it.

Luckily, I’m one of the few who achieved complete remission with just the induction regime, CTD.

Radiotherapy caused colitis and sepsis – had I had a transplant, I’d not have survived the sepsis.

 

Regards

Taff

[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]

Don’t know if it’s relevant but I had severe shoulder pain that came on gradually, getting worse until I couldn’t move my arm – calcific tendonitis – the calcium builds up in the tendon and the pain is felt when the body reabsorbs it, which can take many months.

I had the calcium, which had the consistency of toothpaste, sucked out during ultrasound and was then injected with a corticosteroid.

Virtually pain-free immediately and completely within 24 hours, although it’s supposed to get worse for a couple of days.

Don’t know if it’s any help, just my experience.

 

Regards

Taff

• This reply was modified 6 years, 8 months ago by  taffd.

[taffdParticipant]

I take duloxetine, an anti-depressant, and have done for some years. Prescribed for chronic pain as well as mild depression. With me, it’s impossible to hold negative thoughts for more than a few seconds. Added to my personality, I remain fairly laid back with no mood swings.

I too was on CTD and took 40 mg dex days 1-4 and 12-15. I didn’t get the ups and downs that others speak of, though I did get swollen legs and feet and was and am permanently confused/befuddled. My memory is atrocious but then again, it’s always been bad. Fatigue was and is a problem.

I’ve been in complete response since February, when I finished chemo. Unfortunately, I got colitis and sepsis and had to have my sigmoid colon removed and now I’ve got 2 bags.

I did, when on dex, get angry a couple of times over nothing but it was gone in seconds and I was apologising without a break in conversation. And it was literally a couple of times. As soon as I realised it was the dex making me angry, I didn’t let it happen again.

Also have fairly severe neuropathy, though I can’t say which drug was responsible for that. I remain on morphine – 20 mg MST twice a day and oramorph to suit, usually 10 ml twice a day but sometimes more. Can’t sleep without it.

Still, ent ded yet, so it’s all good.

Regards

Taff

[taffdParticipant]

Thanks David,

I’ve an alternative theory that I haven’t spoken to the docs about yet but will do so in the next few weeks.

Firstly, I would have thought that RT damage to cells would be noticeable and would be definitive as a diagnosis. Not sure if that’s presently the case.

Secondly, thanks to this website, I recorded my original diagnosis and ongoing stuff that happened and looking back at my ‘newly diagnosed’ thread, I see that the change in bowel habit and associated unwellness, started after a biopsy on my abdominal mass, which was found to be mostly necrotic tissue/stuff and before RT.

The biopsy, about 6 samples were taken, went from the bowel through into the mass. I’ve a felling that the biopsy itself caused contamination of the abdominal space, leading to damaged blood vessels to the bowel and the consequent sepsis and bowel death.

Seems more likely than RT damage, although that is a known side effect.

[taffdParticipant]

Morning vivbev,

You might find that CTD gives you a good response again and maybe an even longer remission. It seems myeloma is so individual that there’s just no telling.

Looks like it’s the same decision as the first time and there’s no way of saying whether sct would be of benefit at all, or if it would give you a similar remission or a longer one.

As I said, I made the decision that I wasn’t having one and that hasn’t changed.

Regards

[Author]

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