[mango174Participant]

Hi I was diagnosed in October 2010 and although not fully clear felt really well rom June 2012. only for 'Arnie' to be back with a vengance October-November 2012. so I'm now on Velcade + cyclophosphamide+dexamethasome )+ others cycle 3 of possibly 6-8 no (which appears to be controling things) anyone else on this ?
I find I'm very fatigued & hate the swollen moonface effect
Also has anyone been offered a tandem transplant?

[tishwishParticipant]

Hello
My husband Peter is the one with MM. He was diagnosed May 2011 and had CTD followed by a SCT in 1st December 2011. His pp came down to 6 and stayed there until October 2012 when it started to rise and month on month has continued to rise. A bone marrow biopsy was done and we got final confirmation last Wed that Peter has relapsed. The consultant immeditaly said that a 2nd SCT would not be done, Peter has cells in storage, the reason being that he only got a year remission from the first and all results and reasearch etc show that he would bet even less time from a 2nd SCT. His treatment is Velcade plus dex…..8 cycles in 6 months. We did ask about that cyclophos added to his drug regime and was told no. Peter had his 1st injection last Friday. Slightly sleepness nights since then caused by steroids. Hoping that he may improve as the cycles move on.
Will keep you posted and good luck with yours too

Trish xx

[tomParticipant]

Hi Paul

Sorry to hear "Arnie" Kicked the doors in and moved in ? but am sure he will be kicked out again, Hey I remember that MoonFace it aint a good look is it ha ha but it soon goes take it from me.

I am in remission and Drug Free and I hope you are sonn the same.
Stay Well and Good Luck

Tom Onwards and Upwards

[mhnevillParticipant]

Hi Paul

Sorry to hear your news. Keep fighting.

Best wishes.

Mavis

[BADGERParticipant]

Hello Mango

arnie has also kicked in to me I also hate the moon face i am on the same regime as you about to start cycle 4 i just hope it works I was diagnosed in jan 2009 but was not well most of the year before
Good luck with the Velcade
Love Jo

[mango174Participant]

Hi Trish I'm finding that as I'm working throught the cycles I'm finding the tiredness & fatigue more prominent but I'm still full time working ansd find after tea I'm sound asleep much my Lits indiferance no trouble sleepimg throught the night.

I have the injection subcutaneously and haven't had a problem apart from slight brusing around the injection spot,but teh staff do gie me ananti nausea pill before hand. and because I haven't been ill I still take it for good luck! At least Peters not on the cyclop I'm a stone heavier in three cycles weeks which is uncomfortable

Just hang there,best wishs

regards mango 174 (Paul) '

[eveParticipant]

Hi Paul

Hang in there it is going to be worth it,the fact your still working is a lot,tiredness is one of the symptoms my husband had,but not the moon face he did have a rare side effect painful scrotum .very rare!!!

At least having your treatment subcutaneous saves time.

Jo nice to hear from you take it you are ding fine.??? Love Eve

[lynnemallaceParticipant]

Hi i'm on cycle 4 of myeloma x1 trial. Starting to feel really down right now . On cyclosophimide dexmethasome and lenlolideamide…… excuse spelling. My body is sooo tired but cannot sleep …..been so positive up til now :-). Neeed to give ma self a shake its ms daughters 12 birthday today and school holifday xxhttp://[u][/u][i][/i][b][/b]

[lynnemallaceParticipant]

I am on cycle 4 of myeloma x1 trial. I have put on soo much weight and feel i look like a hamster with my fat face :-(. Small price if I can live longer xx i am lynne x

[eveParticipant]

Hi Lynne

It is hard but you are now on the 4th Cycle,CDR.Slims just had to stop in the middle of cycle 5 but if his bloods are ok,he will start cycle 6 next week,the fatigue is the worst try not to fight it,just go to bed what ever time,the not sleeping is part and parcel of treatment,just try to go with the flow,but watch out for your bloods,this treatment does have an effect on bloods. Keep an eye on your blood pressure,as Dex mask infections low blood pressure and high pulse rate ,are not good.

Slims just out of hospital again,but this time feeling a lot better,so may be they have managed to get control of the infection,plus they have given him lots of platelets and he is having a course of GSFS injections to boost his white cells
Hang in there Lynne,I am sure your daughter would rather see her mum getting better than a birthday party,you can make up for it another time when you are less tired.

Keep going Lynne you will get there.Eve

[lynnemallaceParticipant]

Thanks for your kinds words eve and hope Slim feels better soon. I have been really luck with side effects etc. I do currently have high blood pressure which I am on medication for but it is keep stable with being on all my other meds. Look forward to hearing how Slim's keeping. Take Care. Lynne x

[janwParticipant]

Hi Paul

So sorry to hear your news.

As regards your question about a second SCT, this issue was raised at the Birmingham myeloma info day last weekend. Apparently the results are being discussed within the medical profession about the recent myeloma x trial, but not yet published, which looked at whether a second SCT was a effective treatment method for those patients relapsing after their first SCT. The initial results look good, which means more people will be offered a second SCT depending on the success of their first SCT and whether they are "fit" enough for a second SCT. Unfortunately no further information about remission times was forthcoming, presumably this is because data is probably not available yet from the trial.

Regards
Jan x

[Author]

Posts