[GillParticipant]

Stephen is now on Velcade infusions and back on Dex (Yep Attila the Hun has taken over my husband again)

Not only is he unbelievably tired he looks very ill. He has very dark rings around his eyes and his face is far more puffed up than ever before.

Has anybody else had these side effects from Velcade?

Regards Gill

[brochoParticipant]

Hi Gill sorry to hear Stephen is having a rough time . When I was on velcade the fatigue was a major side-effect, I wasnt able to stay on it for long so I dont know if it gets better over time Fluid retention was also a problem for me , I think it is the combination of dex and velcade Does Stephen take Ferusimide ? It would be worth getting hold of his nurse , perhaps they could lower the dose for a while Sorry I cant be more help but I hope Stephen feels better very soon love to you both Bridget x

[meeuuParticipant]

Hello Gill,
My wife Cecilia initially had a fierce time on Valcade and Dex and she was eventually removed from that course of treatment.That was nearly two years ago. Now she is back on it, on a much lower dose and without Dex. So far so good. The current side effects are fatigue, occasional constipation and infections to her nose, eyes and mouth. She also has a cough now and again. Unlike Stephen, she does not have a swollen face but she does have "bags" under her eyes. Perhaps you should mention the possibility of a reduction in the strength to the doctor?. Then again, you know that this is such an individual scourge of a disease, the reduction may not suit poor Stephen.
Kindest regards,
John

[MinParticipant]

Hi Gill,
Like Steven my husband looked awful when on velcade, I would describe him as grey in pallor, he was tired but the frequency of the dex kept him going. He is far more tired on Revlamid, has some bad days but generally looks well and healthy.
Peter was so ill and his blood counts so low on velcade that he was allowed to miss one infusion, just prior to the week off. He picked up remarkably after that rest. Then its simply stopped working.
The puffy face may be the dex causing a moon face. Ask his nurse to put your mind at rest.
Min

[KeithH17Participant]

Hi Gill,I am half way through the 3rd of a scheduled 8,cycles of Velcade+Dex and have to admit I'm starting to feel very tired and spaced out most of the time.
After the first cycle the side effects were few and far between but since then it's gradually started to have more of an effect.
Platelets have dropped but are still within the limits and I don't have any PN as yet so I'll just battle on and stay with it.
My face is a bit of a mess,all red and bloated,mornings in particular but that's the wonder of Dex.
I do feel better in so-far as the bone pain has all but gone but I'll only know for for sure if the treatment has worked at the 4th cycle stage when hopefully I've achieved at least a 50% reduction in my PP levels.
Hope things improve soon for Stephen and he starts to feel better.

Stay with it and best of luck…Keith.

[sandraParticipant]

Hiya ,
I dont post on here much but do a lot of reading , I am on my 3rd cycle of Velcade at the moment and luckily have had no p/n but for me the worst side affect is definately the moon face and very piggy eyes . I am sure that people double take me in supermarkets ! When I was on thal/dex first time round 3 years ago I suffered the same thing so it is definately the dex taking hold . Also the little round belly isnt very appealing either and the constant craving for sugars and carbs . Thats it I am off to audition for an ooompah loompah in charlie and the chocolate factory that will sort out the physique and the sugar craving in one !
Love Sandra x

[brochoParticipant]

Hi Sandra thanks for making me giggle today !!From another oompah-loompah who also has the round face , awful pot belly and stumpy legs !! Shame we dont all live closer we could put on a very authentic production of the show !! Seriously I hope its not getting you down too much sometimes it depresses me more than others( usually when I try to wear a favourite item)Thanks again because I am now going to have the song on the brain all day love Bridget x

[GillParticipant]

Well this drug is certainly taking it's toll. Stephen has had very little in the way of side effects gregarding tummy problems this far. After reading other's posts regarding Velcade he felt very lucky.

This has now changed dramaticaly. His new best friends are the loo bowl and a bucket. 1 item for each end!! he does not even seem to be able to keep the anti-sickness tablets down. He now believes "if the bloody mm doesn't get you the treatment certainly will":-) Gill xx

[PerkymiteParticipant]

I just love his attitude- a great example 😀 😀

Kindest regards

David

[brochoParticipant]

Hi Gill poor Stephen what a bummer!( oops soory bad pun!!). What about anti-sickness injections , might make it a little more bearable love Bridget x

[MinParticipant]

Poor Lamb,
That means your left to do the house training for the poo pee.
I hope you can get him something to help him feel well soon. These toxic drugs are archaic, if only they could find something kinder to treat the dreaded beast, not Steven Gill, but MM.
Sadly because it is doing combat with a belligerent host it needs to come out fighting and someone will always get hurt. I know you said he had no taste buds except for curry, did you get carried away with the chillies?
Get well soon Steven.
love
Min

[GillParticipant]

OK I have now withdrawn my pity for Stephen's bad tummy on Velcade. Because he was not affected by the tum problems on previous doses HE WAS NOT TAKING HIS ANTI SICKNESS DRUGS!!!!!!!

After a particularly bad vomiting stint where he couldn't even keep water down he took the tablets with a huge glass of water and then immediately up-chucked again. "see" he said " they don't do any good" Grrr. He is now taking them regularly and is a great deal better. Still feeling queasy and so, so tired but not as bad as he was. Good news is that his platelets are up from 55 to 105:-)

PS to Min Poo Pee now enjoying going out in the garden but dashes in to use pee pads for both poo and pee :-S but at least not soiling the floors Gillxx

[adminKeymaster]

I don't get nausea from velcade

[MinParticipant]

Dear Gill
I had to laugh because Steven sounds just like Peter, he did the same with his anti sickness tablets. Waits till he is sick then takes them!! so I had a good laugh at your frustration. Don't worry its an attention thing, my man was sweating so much in bed last night I thought we were going to float off, when I woke him to check his temperature he was well cheesed off. The picture is him with our 3 dogs
Drag the pee pads nearer to the door on a daily basis until you have them outside and you will have cracked it. I used to cover them with pebbles so she could still smell them and got used to using them outdoors. Your getting there and the sun is shining here and we go on holiday in 2 days. Only waited a year for it so cant wait.
luvmin

[GillParticipant]

Thanks to everybody for all the replies. Stephen is listening to his own body now and again "giving in" as he puts it and resting more often. It makes such a difference as when he is not very, very tired he can do some of the things that he wants to do without feeling crippled.

Thanks Min for the poo pee tip We had already put the poo-pee pad outside and that is working but will now put some of the garden pebbles where we would like her to go on the pad.

Gill xx

PS to Nigel Lucky you most do get nausea and other nasties with Velcade

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