[susannahParticipant]

Hi Bridget Sorry to hear of the rash Michael hasnt had any rashes, but he has had lower leg burning from the knee down, his consultant stopped Thalidomide as she thinks it was aggrevating his PN, and she said that there were no other side effects of this kind reported by anyone taking just Bendamustine

Take Care
Sue x

[brochoParticipant]

Hi Sue sorry I was convinced I had replied to your post the other day. Gaga! Sorry Michael is having more problems with his pn, it really is a horrible side-effect, I hope it eases off soon My mystery rash seems to be fading now and the doctors arent worried about it so I am ignoring it! The tiredness , I think Thalidomide is the culprit , is more of a problem but I am hoping that will get better with time Well at least life wiyh myeloma is never boring , something different everyday Tee-hee Hope you are both well love Bridget x

[susannahParticipant]

Hi Bridget Pleased to hear your ok. Michaels back at hospital today, and guess what, still no Bendamustine, his plateletts have gone down again, seems to be one of the major side efffects, but the good news is he isnt nutropenic, so back next week to try again, at least I get to go into Nottingham to do a bit of retail therapy

Take Care
Suex

[TinaParticipant]

Hi Bridget,

Sorry, I missed your posting.

Patrick never suffered with a rash during his Bendamustine year, but glad to hear yours is clearing up now.
He was having regular platelet transfusions as Sue says – a major side effect.

best wishes

Tina XX

[mhnevillParticipant]

Hi Bridget

Glad to hear your rash is subsiding. Hope your energy levels rise soon. Guess your tum must feel like a pin cushion. Wonder if they will ever get it so that these drugs can be used with drivers diabetics use, which I understand aren't so painful.

Something Dai said a while ago struck a chord with me, and thinking of all you experiences reminds me. It's a shame we haven't a way, on site, for people to catalogue their various symptoms and treatments, with a contact email address, so that if anyone has a similar MM script, they culd make direct contact.

There is so much good info on this site, but very doted around, for obvious reasons, because of the nature of the site. Oh the things we think of in the middle of the night!!!

Much love Bridget.

Mavis x

[brochoParticipant]

Hi Mvis that was a great brainwave! Your idea about recording our symptoms etc would be a good one perhaps our moderators will read your post and suggest something I am getting expert at doing the injections now and most of the time it doesnt hurt at all !!The other plus factor is I dont have any bruising when I do it whereas my tummy was black and blue when the nurses did them Oh dear I sound very smug dont I ! Hope you are well and enjoying this sunny weekend love Bridget x

[HelenParticipant]

How is it going with you just now Bridget?
Love Helen

[susannahParticipant]

Hi Bridget Like Helen just wondered how thing were going

Love Suex

[brochoParticipant]

Hi Helen and Sue thankyou for asking. I am still struggling with the tiredness which I assume is Thalidomide Sometimes its scary , the other night I dozed off on the sofa woke and went to get a drink in the kitchen when I looked at the clock I realised I had fallen asleep standing up for an hour in the middle of the kitchen!! Friday and Saturday are lost days as I usually start to feel rough on the way home and I then have to sleep through Friday night and Saturday , cant eat or drink it is so annoying So all in all its not the worst treatment I have had but not a lot of fun either I am hoping it will settle soon I will put up with it as long as it is working as there arent too many options at the moment so fingers crossed Hope you are both ok How is Michael this week Sue? love Bridget aka Dopey Dora xx

[HelenParticipant]

That sound very scary indeed, no mishaps please! When will you find out if it's working?
Love Helen

[brochoParticipant]

Hi Helen yes it was a bit confusing and spooky but later I saw the funny side ! It will be a while before I know if it is working, I have to rely on bmb and mri scans together with any physical symptoms such as pain because I am now a non-secretorBecause of my own experience ( initially my pp results were accurate) I am always a little uneasy to hear people totally reliant on the blood test results alone as they are only a part of the whole picture So for now I will just keep on going and hope for the best which is all we can do really How are you feeling now? How is your hair coming on any sign of curls yet? The first time I lost my hair it came back with lovely curls but after the second time they vanished I was gutted! Now there is not even a wave in my hair which is very odd as I have always had a wave in it Still as long as it comes back I am not complaining and its always a little surprise ! love Bridget x

[eveParticipant]

Hi Bridget
Glad the treatment is not to harsh on you,how many cycles will you do before you have test to see if its working????
I agree with you about the blood test,the only thing that convincers us now is BMB,Slims blood results have always been good,and kappa lightchains do not show true readings. Slim does not mind BMB just finds it a little bit uncomfortable last time the doctor thought he had fallen asleep .LOL

He is sleeping for England at the moment,we are like passing ships in the night,he sleeps in the chair alot,try as much as I can to get him to bed,says he is more comfortable in chair!!!,starts watching tv next minute asleep,but when he goes to bed wide awake.

As for hair,those clippers might just come out yet,it loooks so odd with his dark bushy eye brows,but after reading on here,you saying wait until he is asleep,I am not allowed to touch them at all!!!!LOL,may be thats why he will not go to bed.;-)Love Eve

[TinaParticipant]

Hi Bridget,

I often wondered if we humans could fall asleep standing up – I may try to use this technique when I can't get a seat on the train!
As Patrick did not suffer with the tiredness in the way you do I can only guess it is because of the Thalidomide which he was not taking as part of his treatment with bendamustine.
I am interested to know as you cannot rely on blood tests and a major drawback of bendamustine is low neutrophils and platelets how do you manage this side of things? by physical effects only?

Sue, how is Michael managing on the treatment

Love to you both
Tina XX

[BADGERParticipant]

Hi Bridget

that is spooky I always had a good sleep on thalidomide but not that good!!
sorry you are feeling sick I hate that. I have gone from long and curly hair to almost none and then thin and wispy now its short but quite thick and at the moment a fetching shade of golden brown until i change it!

Love and big (((hugs)) Jox8-)

[brochoParticipant]

Hi Tina yes I think it is Thalidomide thats turned me into a zombie! In the mornings I have wonky vision and frequent catnaps of less than five minutes drives me nuts Todaay and last night were write offs I felt dreadful within 2 hours of Bendamustine and just had to sleep through it , the headache is unbearable , its now about midnight and I am only just able to drink a coffee It is a pain but I dont want to give up on Bendamustine as the choices for treatment are smaller now so I will just have to get used to it It is only paraproteins that dont give true readings in blood tests so neuts and platelets are still monitored ok and so far they have been pretty good , fingers crossed love Bridget aka Rip van Winkle

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