[GillParticipant]

Stephen is about to go on a fairly long course of Velcade to get him ready for a second SCT Does anybody know if he will have to take Dex the whole time he is on Velcade?

If so I'll start divorce proceedings now:-(

Gill

[myraParticipant]

Hi Gill i was sorry to read of Stephens relapse. I have just finished 8 cycles of Velcade treatments which i started in may 09 for my relapse. My treatment was to take the Dex on the morning i had the Velcade and the following morning. When you have Velcade 2xweek it is a bit of a rollar coaster with the Dex and sleep!. My hubby hasnt divorced me yet with all my decorating ideas but whizzes me past the diy stores. My OPA is tommorow with the team to get my last blood results and to discuss what happens next .My paraproteins have reduced significantly on Velcade. Best wishes Myra

[myraParticipant]

Hi Gill cant blame the Dex this time i started Velcade May last year 2010 x

[EvaParticipant]

Dear Gill,
I haven't had any Velcade yet though I may need to do so soon. My comments are only based on my reading of various trials here and overseas and of other peoples' blogs.
One of the things that interests me is that Velcade is just beginning to be administered subcutaneously( under the skin, injections), instead of via IV. One trial overseas suggests that it is just as effective myeloma- wise, but with a lower incidence of neuropathy. Since neuropathy is one of the reasons that some patients have to stop taking Velcade, this is a big deal. I believe there's been a trial involving Velcade administered like this carried out in London. However, even if results are promising, changes take a very very long time to filter through. In the USA some oncs are starting to do Velcade injections. I think if we are well informed and discuss these things with our physicians then hopefully we will get a good balance between caution and implementing new modes of treatment that can diminish side effects.
Other findings which you can research if you have the inclination – are that Velcade might work just as well if given once a week instead of twice. Of course that depends on dose and any generalisation might not apply to an individual. Another thing worth remembering in that dex has been administered in large doses for years and is now being used with greater 'finesse' after studies have shown that sometimes at least, less is more. Again, it's pretty important to discuss this with your onc. Some studies have suggested that patients on a more 'tolerable' level of dex might even survive longer.
When I was diagnosed I was put on 40mg of dex amongst other things. My dose was reduced to 20mg after a short time and my treatment was still effective. I guess we need to 'whatever it takes' to battle the myeloma while diminishing side-effects. I'd prefer to take a smaller dose at first and see what happens. If the treatment is failing then I'd be happy to build up to a larger dose. Of course this would depend on having superb communication with one's onc and a sense that we can have some input in our treatment decisions.
Eva

[MinParticipant]

Hi Gill
Peter is in the middle of his 4th cycle of velcade. Im afraid the dreaded dex is taken throughout the courses.
I read all the information regarding the lowering of doses etc and under the skin instead of iv. Initialy I thought oh that ineresting as it means he can give himself them, as he does with the heparin he has to inject daily because of the velcade. But in reality he has to have the results of bloods done before they make up the Velcade. (which is such a tiny injection) I used to go to the hospital with him for his Chemo but its takes sooooo long to get the stuff from the pharmacy to the day clinic, you would think it was coming from a far distant land!
Just so you know it can take several hours twice a week Peter has attended at 12-30 and occasionally does not get home until 5pm. Whilst I enjoyed meeting others who are in the clinic for chemo work prevented me going twice a week. The dreaded dex does get better when taken with lots of food, but when Dex raises his head in anger I just remind Peter that Dex is speaking to me not him!! and I don't take any notice of Dex when he talks to me. I see it as Peters alto ego. Don't worry you get used to it.
On the plus side it 'velcade' has been incredibly effective to date but he was slow to respond to it.
there is a period of ten days every three weeks when there is no dex so at least you have something to look forward to!
Good Luck
MIn

[brochoParticipant]

Hi Gill sorry but as others have already said dex was a part of my recent velcade treatment Mind you it was a fairly low dose taken only 2 days a week so not as bad Stock up on ear plugs , buy yourself an i-pod even and pretend you cant hear for those dex days !!Heres hoping your peace loving hubby wont suffer from too much dexatude though love Bridget x

[KeithH17Participant]

Hi Gill,I was going to start a new thread on Velcade but I might as well just tag on to yours.
I saw the Doc today and start Velcade/Dex on friday.
I had Dex with my first-line treatment(40mil on each of the 4 days in the cycle) and had no real problem with it apart from wanting to eat for England.

I am also starting on Zometa instead of the Bonefos I currently take and all of this will be given by infusion at my local Hospital.

I've been told there will be 8,cycles of Velcade and providing it works ok a second SCT at the end of it all.

Looks like our situations are of a very similar nature so we'll have to compare notes ongoing.

My own first treatment was VAD through a Hickman line + oral Dex for a planned 6,cycles of which I only needed to complete 4 with my Transplant in May 2008 and 2.5 yrs remission.

What was your first treatment?

Best of luck…Keith.

[MinParticipant]

HI KIETH AND GILL.
Peter is well into his velcade now and so far the only side effects have been. Hiccups…and DVTs but todays appointment with a brand new registrar (who's English left much to be desired, and clothing looked like it was from a charity shop) hit him with bombshell the bad news that his numbers have gone thru the roof since 14dec climbed up and up Fortunatly she went off to speak to the Proffessor and we read the computer while she was gone.
Such a shame as he was responding so well. Going to join you Bridget probably on Revlamid in about two weeks or so when he gets thru to the end of cycle 4 this Friday
Just amazing that he feels so well otherwise. I have been thinking he looks really rosy and healthy. Just goes to show how useless I am. He has been so warm at nights after months of feeling cold, ( do not read this the wrong way I mean warm to touch and not needing a hot water bottle) was sure he was on the mend… Bugger bugger bugger. I have a migrain now… must be the chocolate! Now its my turn to say onward and upward
Min

[RozParticipant]

Hi Min

Sorry to hear the velcade has stopped working. The revlimid is a much kinder treatment. He'll still take the dex with it. 🙁
Hopefully the revlimid will do wonders, I've known it to.

All the best for you and Stephen
Love Roz

[GillParticipant]

I have not read all the postings for a couple of days as we were away so I missed this one from you Min. I am so sorry that Peter's news has been not particularly good.

MM is so hard to track. Stephen was really well and feeling fine apart from a bit of back ache when we were told he had relapsed. What a shock

Gill xx

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