[bandityogaParticipant]

Bad news velcade not working for Ian after 3rd cycle. On the advice of Maggie, (myeloma UK) we asked if cyclophosphamide could be added and were told definitely not. Seeking second opinion and after consultant being very stroppy he then referred us to Edinburgh Western hospital. We might get refused but we have to try as we don’t want to use up all the treatments so quickly.

Going next Thursday, so fingers crossed. Otherwise, hubby is feeling much better and stronger, can’t understand why FLC rising, they are now 840 but all other bloods good.

Been in the garden cutting down trees to calm down. I hate all cancers.

Maureen

[SalParticipant]

Sorry to hear this, Maureen,

I can sense your frustration. Don’t undo the good your lovely holiday has done, though.

Velcade didn’t work for Mark either, even with cyclophosphamide and prednisolone, then dex, and we both felt really disappointed that he had gone through 5 cycles of it with no results, and light chains a bit higher then when he started. I felt that nothing was going to work, so didn’t really know how to handle the more positive news we got last week.

It sounds like a very good idea to get a second opinion. Consultants should not be stroppy – they’re meant to  be on our side!

Will be thinking of you both next Thursday and hoping for better news.

Sarah x

[PerkymiteParticipant]

And Me, I had three cycles of Velcade and had bad PN.

I went straight onto Revlimide and within 3 cycles was in “excellent Remission” – Consultants words. All blood readings at normal levels and no sign of Myeloma. This is the first time in 6 years that I have gone into remission. 25 mg Rev for 21 days and 7 days off with now 10 mg Dex (was 20 at start) every Monday morning.

Kind regards – vasbyte

David

[andygParticipant]

Hi Maureen.
I can understand what you mean about using up the treatments available too quickly. I got through most of the standard treatments in six months and none worked. I was put on Revlimid as a last hope, it wasn’t standard treatment then, and after a slow start plus the introduction of cyclophosphamide it got my PPs down to the mid teens. Not great but it kept me stable. When it began to fail I convinced my consultant to try a few more cycles which she did however my PPs kept climbing. My thoughts were – this is the only drug that worked for me so what are the chances of the next one working? What is the next drug? Is there a next drug? Anyway my consultant managed to get me on Pomalidomide, not available generally, through applying to the cancer drug fund and it seems to be working. Now I need it to work for a while till the next drug comes along and hope that will work too. Otherwise I’ll be onto some harsh old fashioned treatments!
I’m don’t know what’s a bad or good FLC reading but if you can get it stable and Ian’s other bloods remain good with no other typical mm problems that’s not too bad. That’s what happened to me on Revilimid though my bloods weren’t very good especially my neuts 0.5 – 1.0 but I hung in there for 22 cycles. If Ian is feeling good and stronger that’s a good sign. I prefer to go by how I’m feeling rather than the tests.
Ok you can tell I’m on my steroids sorry for the long ramble.
Good luck with everything.

Every day is a gift.

Andy xx

[bandityogaParticipant]

Thanks for all your replies.

We just want to try and see if adding cyclophosphamide will work. Consultant advised that this combination isn’t used at our hospital. Think it is a postcode lottery what treatment you get which really unfair. Ian hadCTD which had to be stopped after 3 and a half cycles to let his bedsore heal. This brought his FLC down from 4000 to 52.

Sal
Hope all goes well with hubby’s SCT

David
When we’re you first diagnosed and how much remission did you get after SCT?

Hope you get a long remission on revlimid.

Andy
Hope you get some sleep tonight.

Maureen x

[PhilipandfionaParticipant]

Hi

Our doctor didn’t even give the option of cyclo or not, when Philip went on Velcade it was Velcade Dex and Cyclo. He was “allowed” to drop the cyclo for the last cycle as it had just about disappeared by then.

Hope hte 2nd opinion works.

[eveParticipant]

Hi Maureen

You are right to get a second opinion ,you do not need a stroppy doctor,Slim has always had the cyclophosphamide and Dex combination,you need a hospital that is able to tweek the treatment to suit the person.
Better to get a second opinion in the early days,I would look up to find out more about the hospital and consultant,you do need a Myeloma expert on board!!!

One husband one life,you want the best for him,so do what is necessary ,stand your ground.

Good luck Eve.

[Author]

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