[bandityogaParticipant]

Got second opinion from consultant in Edinburgh and he advised Ian to go ahead with revlimid as he had a good response to thalidomide and did not think that adding cyclophosphamide to dex would work.

He explained that revlimid can be used long term and if Ian gets into remission he would recommend SCT and there will be more new treatments available if he is still alive.

Fingers crossed it works. Got to see stroppy consultant in FVR hospital on Monday.

Maureen

[eveParticipant]

Hi Maureen

You did a good thing by getting a second opinion ,life’s to short to waste time with stroppy consultants!!!

If Andy can get 22 cycles plus some people get a lot more then it’s a good thing,cyclophosphamide knocks the cells but at a price???? Dex seems to enhance the other drugs like Revilimid

Good luck on your journey. Love Eve

[PerkymiteParticipant]

Hi, Yes my consultant told me that they are not quite sure what Dex actually does but it does seem to aid Revilimide to do its job. I go for my monthly check up on Friday. I am on my 10th cycle – I think of Rev. Let you know how I get on.

Kindest regards – vasbyte

David

[jeff605Participant]

I’m on my third month of Revlimid and Dex, it’s slowly reducing my p/p, it’s now down to below 6.5 from 28. (exactly what it is, is another subject, see the posts under ” getting blood test results ” )Revlimid and Dex is my third set of chemo drugs, and appears to be working. Be nice if I actually get to remission for a spell. Side effects have been minimal. tiredness is the worst, and the neuropathy seems to be slowly creeping up, but is a nuisance more than a concern. So, Maureen, I wish Ian success with the Revilid and not too much hassle with the Dex ( should have said I find this quite a nuisance fighting the physical and mental ups and downs it causes. However now I know what’s causing the problems I just get on with it and moan a lot !!)Jeff

[andygParticipant]

Hi Maureen.
When I stared out Revlimid I was just on Rev and Dex. Cyclophosphamide was added to the mix a little later. Initially my PPs didn’t move much but, I think I’m quoting Dai here, Rev is known to be a slow starter. Anyway I ended up having 22 cycles of it.
Dex actually fights myeloma in its own way and sometimes is used on its own. Though I don’t think it’s used that way widely.
Cyclophosphamide is a cytoxin in that it kills cells. Unfortunately it a bit indiscriminate and kills good cells too hence it’s side effects. The main ones for me was 2 or 3 days of nausea, lack of taste and chemo brain.
As we know myeloma cell evolve and render drugs useless. I think hitting the myeloma cells from two or three sides at once may give a bit more longevity to the treatment.
Maureen were you and Ian looking for cyclo and Dex To be used as his next treatment? Then hold back Revlimid for later?
I do hope Revlimid does the trick.

Every day is a gift.

Andy xx
Member of the Dex wide awake club!

• This reply was modified 10 years, 3 months ago by  andyg.

[bandityogaParticipant]

Hi Andy

We were looking to add cyclophosphamide to the velcade and dex before Ian moved on to revlimid but consultant advised that it is used more down south than in Scotland and as Ian had a good response to CTD and revlimid is a sister of thalidomide but with fewer side effects his best chance would be to move onto revlimid. We are hoping that Ian will get into remission and get a SCT?

He starts a week on Monday so fingers crossed it works well.

Maureen x

[davidhandParticipant]

Hi everyone.
Am part way through cycle 2 of dex and Revlemid.
It is a comfort to share your experiences, as I thought I was suffering on my own.

Please keep the experiences going.

Anyone else suffering from constipation?

Keep fighting,

Regards,

David Hand

[PerkymiteParticipant]

I seem to move between Constipation and very loose bowls that can explode at any moment. I won’t recount some of the problems I have had. I am off Chemo at the moment and my bowels have quickly gone back to normal.

When on Chemo I note bowl movements on my calendar and as soon as I see a gap I start taking Laxatives to help. Not a lot just one dose to start and then two the next day and so on. I normally also eat lots of fruit and take prunes when constipation starts (well they help me LOL). Point do not take Laxatives within a few hours of taking any medication, i.e. take medication at 9 laxatives at 1 for example.

Hope this is of some help

Kind regards – Vasbyte

David

[mhnevillParticipant]

Hi Maureen

Good to hear Ian has a new way forward. I do hope things go very well for him.

Best wishes to you both.

Mavis

[andygParticipant]

Hi DavidH
As DavidM indicates constipation is a seldom talked about but constant bed fellow with myeloma treatments. I find Dex bungs me up good style. And being on Dex once a week every week takes it’s toll. As DavidM says note down when it happens and you will see a pattern and hopefully you’ll be prepared and able to take some preemptive action to minimise the err problem. Fibre, fresh fruit and laxatives help.

Every day is a gift

Andy

[jeff605Participant]

Hi, I’ve been fortunate with constipation, with the exception of a stay in hospital messing things up, by careful juggling of Maxidol and Lactolose I have largely kept it at bay while on the various chemo. drugs. At present I have been on Revlimid. Following an emergency operation for a burst appendix and a perforated bowel I have been off chemo, I am waiting to see what will happen when I get back on them now I have a Stoma. Complications I really don’t need ! Still, I work on the basis of you’ve got it, deal with it, so it’s just a matter of wait and see I suppose. Good luck dealing with the very disturbing problem of being constipated, Jeff

[finnParticipant]

Hi David H

I found that beer and liquorice help relieve constipation. Anyone found other natural/food things to try?

 

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