[hlParticipant]

Hi, my husband’s myeloma is back and he was asked to join the MUK five trial.  He was randomly selected for the Cyclosphomene, Velcade and Dexamethosone (CVD) group and has completed his first cycle.  I’d like to know how folks are coping with this group of meds?  My husband couldn’t sleep, he was hyper all the time, bloated stomach with severe swelling to ankles and feet, with skin breaks and bruising.  I put this down to the dexamethasone and question whether he should continue on this regime.

[froghallParticipant]

Hi,

I asked the very same question today whilst having my week 2 Velcade injection – “What else can I expect?” and is how I am feeling normal?

No swelling with  a 43% kidney EGFR. Totally exhausted which I can’t nderstand as surely the 80mg total DEX over 4 days wk 1 & 2 would give me a much needed energy boost. (and here am I am on the net grocery shopping!!)…..

I realise its early days, and am preoccupied for hair loss signs…..I spent the entire past weekend after week 1 mostly sleeping. Plenty of bruising on stomach area but I expected that given my easy bruiser status. Oh and I mentioned possible Peripheral Neuropathy today, given the fact my palm was numb and had experienced pins and needles for the past couple of nights, this evening not a dicky bird, even typing is easier.

However, I am finding the mental confusion hard going. When asked for my personal details today I hesitated…had to think about my address. So I guess as everyone says we are all unique, will react differently to the regimes. BUT it sure does help to learn from others and help to clarify and educate me better in what each and every one of us is going through.

I hope things get easier for you both, and that with a few adjustments over the course of the cycles your husband has an easier ride.

take care.

 

[joycematherParticipant]

Hello,  I have had 3 weeks treatment on Velcade and Dex and find that two days after the injection I have a burning prickly head and chest and feel so bad I can’t cope with carrying out basic things.  This lasts for 3 days and then leaves me with less severe symptoms.  I also have more swollen legs and ankles and have put on half a stone in weight.  I spoke to my consultant about this and was told that the head and chest problem was not caused by AL amyloidosis.

I had a prickly slightly dizzy head before I started the vel/dex but I am quite concerned about carrying on this treatment as it makes me feel so ill.  Anyone else with the same or similar symptoms please?

I do get the prickling in my hands and feet/legs but I don’t feel tired as yet.

[the-old-manParticipant]

Hello,

I had four cycles on CVD at which point my consultant felt that my progress was slow. However I felt reasonably comfortable about the treatment with only the usual side effects – poor sleeping, tiredness.  A bone marrow sample showed that the percentage of cancerous cells  had dropped from 74 to 50. A PET – CT scan showed that I had an unrelated cancer in my bowel. This has now been removed and the MM is now being treated with Revlimid  that I take daily for three weeks, then a week off and weekly Dex, being 20 x 2mg pills. This is my first cycle on the revised treatment. Again minimum side effects – tiredness, breathlessness, bone ache in the back and ribs, irregular sleeping pattern, some tingling in hands and feet, grumpiness after the Dex. Like all of us, we just have to cope and accept each day as a bonus.

Good luck to everyone.

Don

[petesilverParticipant]

hi

I have just started cycle 2 of  Velcade, cyclophosphamide but this time the steroids are Prednisolone which I seem to tolerate much better. I am not getting many side effects to date (fingers crossed) which I did when taking Dex.

But not being a medical expert on the subject of steroids, I just wonder why its nearly always Dex if Pred has less side effects, but we are in the hands of our consultants.

I hope your husband is feeling better.

Pete

[basingunitParticipant]

I’ve just finished my 7th cycle out of 8 of CVD, sleeping is a big problem so my consultant lets me spread the Dex intake over 2 mornings which seems to help. It is difficult to determine which of the drugs are causing the  other side effects such as disorientation, forgetfulness, tiredness, weight gain and visual disturbances, to name but a few.  I have the treatment on Mondays and the side effects are definitely worse on Thursdays, Fridays and Saturdays, just about back to normal in time to start again on the following week!!

Having seen Pete’s reply I must ask my consultant about Prednisolone.

 

[petesilverParticipant]

Hello BasingUnit

What a strange thing is myeloma, everyone seems to have different experiences, I have just finished cycle 4 of Velcade, cyclo, and prednisolone with only side effects are an aching back plus the usual so far, so I must count myself fortunate.

Last month when I saw the consultant he was going to stop treatment as according to my bloods nothing was happening,when I saw him yesterday after a CT scan which showed compared with the last scan in April it is working so now I will be doing the whole 8 cycles. The only thing I do differently on a personal level I do have Hyperbaric Oxygen once a week it seems to help me cope but impossible prove, but I know all the people with Multiple Sclerosis who’s therapy centre I go to are convinced it helps them, but talk to the professionals you get mixed and confusing advice so its a personal choice I have been doing it now since I was diagnosed with MM in 2004.

Hope you feel better soon, regards Peter

 

[bandityogaParticipant]

Hi Peter

Do you get the barbaric oxygen privately? It might help my husband’s back to heal after spinal operation. He has a little bit that is very slow to heal after one year. I also read it was good for myeloma.

Maureen

[meganjaneParticipant]

Hi Maureen,

I looked into this for Phil (although he hasn’t done it yet) and I found a Multiple Sceloris group near us that has one. From what I remember it was not too expensive and anyone could use it. It might be worth checking if there is a MS group in your area.

Megan

[bandityogaParticipant]

Thanks Megan I found an MS group online not far from us which offers hyberbaric oxygen. I will contact them after the holidays.

Maureen x

[petesilverParticipant]

Hello Maureen

I get my HBO from the local MS therapy centre I go every week, but I suppose I am fortunate as my wife works there and I also help in trying to raise funds to keep it going.

I seems to keep me going been doing it now for 8 years, has it helped !! think it keeps me going as do all the treatments I get from our excellent hematology dept in Exeter, just about to start cycle 5 of VPC and side effects are still quite bearable, a bit is nausea, some days not feeling to good some pain in my back but CT scan I had last week showed it is working so fingers crossed this carries 0n

Peter

[Author]

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