[brochoParticipant]

Hi Kay glad to hear treatment is going ok. Poor you gout is very painful isnt it, the last thing you need. I am fairly certain it is dex that makes me feel sore and tender, but it is my first curse of revlimid too. I finished my dex pulse last Thursday and the tenderness was at its worst on Sunday, so the timing is right. I think your description of being hit by a steamroller is spot on !! I hope things carry on smoothly for you love Bridgetx

[BADGERParticipant]

Hello Kay

good luck with the CDT it really worked for me I also had a rash we diScovered it was the Anti B they put me on ( CIPROFLOXIN)it looked like a german measles rash

Keep Well love jO X:-D

[BADGERParticipant]

Hello Bridget

I am well at the moment get PEP results on the 1st of march so fingers crossed I next go to UCH on thursday 24th Feb when will you be there.I
have a support group meeting this friday I believe we have a speaker from McMillan so should be interesting I will let you know all about it I am so glad your pain is getting a bit better lets hope it gets better and better

Keep well
Love Jo x 😎

[kaychappersParticipant]

Hi Bridget thanks for reply. I did not have gout thank goodness. I was put on a tablet for one cycle to stop it. My consultant said that when myeloma breaks down it could cause gout!!!! But they took me off it because of the rash. Although it's not pleasant for you it's nice to know we seem to have the same symptoms a few days after the Dex. Strangely I also laughed when I saw your dream. I also had the weirdest dream last night about my friend which I told her about this morning. She thought I was my rocker. Mind you so did I. Kay x

[kaychappersParticipant]

Hi Jo. That's interesting about anti biotics mine are co trimoxazole forte but the rash is like german measles. Great to hear CDT was a success for you.keeps me positive Kay x

[GayeParticipant]

Dear Bridget – I was completely adamant that I would never take dex again after preparation for my first SCT and I have never gone back on that level since but have gone on much lower doses. I like you share the taste business with dex but I also noticed that when I was on Revlimid it first took hold so I can't be completely certain. All I know is that I hate it. The fact that Pomalidomide is also in the same family as Revlimid does make me wonder if that is the link too. Either way we are stuck with it!

Come on old friend if it helps that we seem to both be sharing the grumps, outrageous behaviour and pain, although thankfully your pain seems to be improving, then I can't think of a better person to share it with!

The pox yet again to myeloma.

Love, Gaye xx

[brochoParticipant]

Dear Gaye I think you may well be right and the dex effect may be when it is used in combination with others like Rev and Pom Botheration and a double pox to myeloma!! I am certainly glad to have a friend like you to share the journey with, if only they hurry up and relieve your pain We can be 2 cantankerous outrageous old biddies( not really old though!) and blame it all on the drugs!! Seriously though I am going to try not moaning about the drugs as last week my lovely father-in-law was told his chemo wasnt working( and his tumour is much larger) , they are no longer going to actively treat his cancer now , its heartbreaking watching the fight go out of him So as awful as our treatments are I am grateful that there are still treatments Hope today brings you some relief from the pain, when do your rt sessions start? lots of love Bridget x

[KWilsonParticipant]

Bin there, done that – I know JUST what you mean about the tenderness – if defies description – you do really feel as if someone's given you a good old kicking and every part of soft tissue is tender (as you say, even the hair roots).

Below is a copy of my reply in another section here which I've just typed.

[i]"I'm on Revlimid and Dex and have been for some time. However, things aren't on hold as well just now.

My problem is mainly the steroids. When I take them, they wipe me out completely and I have 7-10 days where I'm totally useless (ok, some would say that's a normal condition for me!) I feel faint, lethargic, 'down' am vomiting and just can't get off the sofa.

Now, in the hope of extending my days, the Dex has been put back to two pulses in the cycle but to be honest, this means I only have about 6 functioning days and I think I'm going to have to consider whether it's worth it – extra days but being too weak to do anything or spend time with family and friends don't seem valuable. It's that balancing act again."[/i]

Taste, what taste? Nothing tastes as it should and it's hard explaining that to people who bring you lovely baking and stuff to make you feel better. I do feel ungrateful when I tell them I can't taste it so can't say whether I liked it or not but it's just a fact.

Thing is, when I'm on the extra Dex the PP does go down a bit, which, otherwise it doesn't but there you go!

I hope some of your symptoms settle soon as your body gets used to the Dex.

xxxxxxxxxxxxx

[brochoParticipant]

Hi Kath lovely to hear from you but I am sorry you are having such a rotten time As you say it becomes a balancing act to gain some quality of life when these drugs rule our lives. At the moment I am hoping like mad that next month will be easier as I am fit for nothing most daysWhat I find really frustrating is when you have a day where you do manage to get something done and the next you are on the sofa again At least we all have each other !! I think the taste or lack of it is a huge thing it really makes me so miserable to not even enjoy a cup of coffee Hers to better days for us all love Bridget x

[BADGERParticipant]

Hello Kath

I hope you dont give up you have been a real inspiration to me I also could not have an SCT and reading that are still here 9 years later gives me a lot of hope that I can achieve something like it

Much Love Jo x

[KWilsonParticipant]

Thanks Jo,

I'm still hangin' on in here, altho' I do admit on my really bad days I do feel a bit worn out with it all but then, who doesn't at some point?

I'm hoping to keep plodding on for a while yet!

xxxxxxxxxxx

[BADGERParticipant]

Hello Kath

Jolly good too, I agree we all have bad days so its all right then to feel like that you have a lot to contend with

Keep well Love Jo x

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