[PerkymiteParticipant]

Hi Keith, hang on in there buddy, you sounded pretty down in your last posting, "[i]making long term plans, and what a fool am I[/i]" . Not so.

I did not get into remission after SCT, I am on a Plateau so I am told so I might well be joining you all pretty soon on the Revlidimid/velcade whatever bus! So just keep going all of you, you guys are my inspiration so don't let an old man down!

I just wanted to comment on the sensitive teeth. The right hand rear side of my jaw is very sensitive to hot and cold and I do find difficulty chewing on it, so much so that I rarely do! It has been like that from about one month after my SCT. Seems something we all get!

Kindest regards
David

[BADGERParticipant]

David

sorry you did not get remission from your SCT but my docs say plateau is pretty good and you could be in that stage for a long time fingers crossed
you are an inspiration to us also with your cheery comments and little jokes we are all with you SO CHIN UP 😛

Love JO 😎

[GayeParticipant]

Dear David – I didn't get complete remission on my first transplant = it was quoted as 'traceable' but it was enough to give me 18 months remission and live an almost normal life. So, don't go there until they tell you. I know it is really hard this rollercoaster of an unwanted companion but you are a fighter and much loved and respected on this board. Go for it David. Love, Gaye xx

[KWilsonParticipant]

[quote] Perhaps someone should open a restaurant for people who are taste compromised?? Could call it Th e Cardboard Cafe? Sorry I am in a silly mood today Hang in there Keith it does get better and you will struggle to remember how rubbish you felt !!love Bridgetx [/quote]

lol totally agree, hard to explain to anyone who hasn't been there isn't it?

I can totally relate to the 'feeling rough' altho' I'm still on Revlimid/Dex I'm getting the same side effects. I long for a 'normal' day – no solutions to offer tho'!

Keep on keeping on.

xxxxxxxxxxxxxx

[adminKeymaster]

As a Velcade junkie (starting cycle 6 some time soon) I know what you mean, but I really think we should count ourselves lucky as it is a very targetted drug and the side effects, though horrid (I get flattened and everything tastes horrid and I tingle all over) its so much better than what the breast cancer patients are going through with their chemo. I'm also lucky I guess as only my Day 1 perfusion is at the hospital, the other 3 are done at home by a nurse. And yes, whilst I love the Dexamethasone (I love being up all night, full of manic energy, vleaning, being acute etc.) it is pretty foul really, and make me feel dreadful too.

Take care – its a great drug.

N

[eveParticipant]

Hi Keith and NIgel
I just found your post when I was looking for some info on feeling so bad,my partner is just finishing 3 cycle of ctd and starts 4 on Friday.

The problem is he feels so bad,ended up in hospital yesterday,very dizzy ,turned out,low blood pressure and Dehydration ,although he was drinking well up to feeling lethargic last week ,went down hill last 2 days.
No fever but burning hot.
Dex usually gives him a bit of a lift,but not this time,can you two recommend any thing that helps you,as hospital looks at it as normal,except for bp which they say could be pills he his on.advice more fluids,
Has not taken to his bed fighting it all the way,not a good patient ,I would be glad of any advice. eve

[KeithH17Participant]

Hello Eve,Dehydration and fever-like symtoms is how I feel also.
Usually the day of treatment as well as the days in between although there are different degrees of how bad it can be.
I get very tired during each cycle with little respite before it all starts over again.
You should never fight against the fatigue as it only makes it worse.
Best thing to do is rest for a while until it passes over which eventually will happen.
I found out along time ago that you must recognise your limitations with this disease and live by them.
Drinking plenty of fluids is a must and if the blood readings are abnormal then the Hospital should be able to prescribe something to help.
Sorry I can't be of more help Eve but sometimes you just have to ride it out.
If the treatment is having the desired result then the effort won't be for nothing.

Keith.

[eveParticipant]

Thanks for reply
Hard to get fluid in Slim,has been so good about it for last 6weeks,has a sore throat,as drugs attack soft tissue,I know this is going to be a hard time,but the low bp is it normal ,
My daughter has found a chemist open and managed to get rehydration powder,plus energy drinks,having to put them in other mixers to make them tastier,also bonjela for adults.using straw going in every 10 min and making him drink,seems to have improved from this morning,used the hospital as a threat,if he did not drink something.
I think a divorce is on the way,before we are even married.

Thanks again eve

[Author]

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