So What's Next

FormerMember over 3 years ago

3 replies
38 subscribers
1295 views

Here we are having gone through my SCT (March 2020) and been in remission for a year and 2months. SCT not a great success, had my review to be informed that my Myeloma was back and that I have a more aggressive form of Myeloma. Great!.

I could have another go at SCT, but I ruled that out, I really don't want to go through all of that again. As I seem to have an aggression form it limits what treatments are available to me (I am quoting from my consultant) So currently on Lenalidomide/Ixazmib/Dexamethsone. Nice combination.

Only reaction so far has been swollen ankles, and boy do they hurt (Lol).

I do get days when i am very tired and lethargic, and other days when i seem to have lots of energy, so I try to make the most of my energetic days. I am on Fentanyl patches for the pain which are suppose to last for 72hours and dont, i am on 48hours changes and they still dont last so i have to top up with liquid Oramorph (Morphene). Very sweet tasting.

Which all leads me to my last problem - BOWELS

Seems all the tabs I take make me constipated and i have loads of laxatives to take (which do not taste great) and it gets to be extremely painful sometimes.

If someone could cure me of that i would be a happier man.

Well thats my update

MrsBJH over 3 years ago

Hi . I just dropped by, I'm not from this group, and noticed you've not yet had a reply to your post as yet. I'm so sorry to read that your SCT hasn't been successful and as a result you've declined further treatment. I'm going to tag the Champ of this group greg777 so hopefully he'll be along soon to chat.

As to your last problem you mentioned, I've added a couple of links to some reading material on Macmillan that you may find helpful.

Bladder and Bowel Problems and Tips for managing eating problems. After my Brachytherapy I tend to have problems of the opposite order (Diarrhoea) but I do know when my hubby was on Co-codamol for his hip problem suffered really badly with constipation and trapped wind. Isn't it amazing what you can chat to strangers about on these forums!

Hope that helps.

Stay positive, big hugs, B xx

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greg777 over 3 years ago in reply to MrsBJH

Hi Tony_up,

I am so sorry to read about your relapse, I am so gutted that this has happened to you, I can only imagine what a horrible time it must be. I very much empathize with the steroid highs and lows, and the distress of bowel problems, so I am really hoping that you’ll manage to find some equilibrium really soon.

I am also sending you loads of warm wishes at this time.

Greg

Penny36 over 2 years ago

Hi Tony

It sounds like you're having an awful time of it just now. My partner is currently going through the early stages of treatment.

As a carer, all I can suggest to help you with is the constipation ... Just ONE teaspoonful of Andrews with your last meal of the day, every day ... It's worked for me for the past twenty years! It's also helped my partner a lot (and he was really sceptical to begin with!)

Take great care. I hope and pray that your horrid pain goes away really soon.

Sending you big hugs and healing prayers.

Penny x

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