[VickiParticipant]

Hello all

Has anyone been on this treatment. After relapse Colin was tried on velcade and dex but It hasn’t worked, first cycle light chains dropped from 5 to 4000 then next cycle results they gone up from 4 to 7000! That was a real shocker!

I’m worried. We haven’t seen the consultant yet but we’ve been given a leaflet for bendamustine. Consultant next Tuesday and then treatment starts Friday. Worries are naturally what if this doesn’t work. Also the confusion, they have told Colin this in the treatment room when I’m not there to hear it for myself so worried! Firstly kidney function is slightly worse. Although they said they aren’t concerned but can discuss on Tuesday……then this new treatment appears to be in combination with steroids and I thought Colin said maybe thalidomide? I thought this drug had been superseded by revlimid. To me it feels like we are going backwards not forwards! We also don’t know how many of these cycles Colin will have (as a guess we are assuming at least 6), and we’d really like to know how successful it has been for others. Reading the literature is scary as it seems like a real big hitter.

If we are fortunate enough to get a second SCT offered if Colin takes it, is there any evidence to suggest that remission for second SCT is longer than the first! Colin’s didn’t seem that long first time as the light chains started to go up after January consultantion!. Would it be worth going for Second sct? Also if we just went for medicAtion is there a correlation between having a short remission and then medication into remission not lasting very long either. Hope this makes sense but there are so many questions. This doesn’t get easier second time round!,

Vicki and Colin x

[amandaParticipant]

I read your comments with interest.  I have light chain readings of 4000 to 2000 .  on velcade with dex.  This result wasn’t enough to put me into remission with a lower reading.  I needed to be at around 25 to 100.  I am just about to start another course of velcade with thalidomide to try to get the reading down.  I am disappointed to hear your response on this.  I had my trepidations about this course, and like you feel that it is going backwards.  I am supposed to be having a STT when the level is lower. I wish you well with your next course and hope you go down as quick.  I find all the waiting such a delay in the treatment is quite frustrating.  Good luck.

[AliParticipant]

Hey Vicky

I am so sorry to hear your news. You are right, its not easier to take 2nd or even 3rd time round. Did Colin have cyclophosphamide added to the velcade/Dex regime? ( I think that’s what Tom had ) I also know nothing about Bendumustine, so cannot offer any advice. But I can send my warmest wishes and a big hug to you both. Let the consultants worry about the treatments, you guys have to concentrate your energies on getting through onto remission again. Private message me if you like Vicky.

Love Ali xxx

[finnParticipant]

Hi Vicky

I am so sorry to hear that Velcade did not work for your husband. I have similar thoughts as Ali here; how about suggesting the consultant to add cyclo to the Velcade and Dex treatment? Has he been on Revlimid yet, and if it worked, how about using it again? Or trying to get Pomalidomide like Andy? I thought Bendamustine is not used anymore when we have these much newer drugs available. Best of luck

[jillsParticipant]

Hi Vicky,

Sorry to hear your news. However, thalidomide is certainly still used and does work well, my Mum has now had it twice, in 2008/9 and for this last year and it is the only thing which seems to work well for her, in combination with Dex and cyclophosphamide. Velcade was not very effective and nor was Revlimid as it made her blood count very low (both Hb and WBC). She was considered for Bendamustine (which is certainly still used as well) but at her age it was thought to be too strong for her. It sound like Colin is a bit like Mum in that he has high light chains (is he IgA?) – I wonder if some of the drugs work better on light chains.

All the best,

Jillx

[VickiParticipant]

Hi All

Thanks very much for your thoughts and support. We have a clear path of where we are going now! The velcade was prescribed with Dex and Cyclophos so I think we can say it didn’t work. Light chains went up from 4000 to 6950!

So they felt it wasn’t worth giving that another go, So the plan is that Colin will have this Bendamustine. He will have an infusion on a Thursday and Friday 1 a month with prednisilone steroids for I think 4 days of each cycle.

Jill no one has mentioned what his category is so we don’t know if he IGA. They picked this one as they are trying to avoid Revlimid/thalidomide at the moment as Colin was so poorly on them first time around. We hope this different treatment will work but we thought the consultant said it was between 30-60% effective on patients so who knows? Our consultants haven’t mentioned PPs for ages and seem to be focussing on light chains so I am guessing that maybe some treatments are better for light chains than PPs or it could be the other figure is lower,,,,we don’t know.

This all starts on Thursday so lets keep our fingers crossed,

Ali, not a techie, don’t know how to do Facebook!

Vicki

[andygParticipant]

Hi Vicki and Colin.

Sorry I’m a bit slow with my response but I had a little holiday curtesy of the NHS! so had no wifi and my phone reception was totally rubbish.

I have been told that Bendamustine could be my next drug of choice when Pomalidomide starts to fail. Although it’s an old drug, I was told it’s derived from mustard gas!, it’s new to myeloma treatment. I haven’t read up much about it but I will now Colin is going to be treated with it. I know two at our day unit who were tried with it. I’m not sure how they reacted to it. 30-60% effectiveness is not a bad response rate for Myeloma drugs but there again statistics and what they refer to can be confusing.

At our support group meeting last week, which I missed even though I was only a few wards away, professor Jackson said that for accurate monitoring you need both PPs and free light chain results. He also said he’s not a fan of BMBs for accuracy due to the fact it’s an isolated sample and could hit a “hot spot” or miss myeloma altogether. Oh that news was passed on by Steph when she visited me after the meeting.

Not on Facebook! You miss all my updates about what I’m getting up to lol. There is a myeloma support group on there too. You’d recognise quite a few members and I find it’s easier to post on there than here.

I hope Colin is getting on with his new treatment early days I know. They tend to be the hardest!

Right time for some Bendamustine research. Yep it’s my weekly Dex night.

Every day is a gift.

Andy xxx

[HelenParticipant]

Hi all
I’ve just posted a résumé of my anniversary treatment to date! Then spotted your post Vikki!
Bendamustine is a next drug for me too, if Pomalidomide fails – and assuming no further sct. It is given IV and you lose your hair etc so it’s more onerous than the oral chemo.
My disease is IgA lambda light chain oligo secretory mm – so I had a pp of around 3 and sflc 800 at diagnosis. Both very low but not quite nonsecretory. I’ve still got unmeasurable pp’s but sflc jumped to 900 in November.
So ask Colin to find out if there were ever pp’s detected and what sort of light chains he has- I’m all for well informed patients! Second autos can be done, just can be complicated getting cells if the bone marrow is shot, but there are people out there who get long remissions from second transplants apparently. I was told today that they probably wouldn’t be able to get any more from me, I did remind them I have a second set in the freezer, I think they are going to look for them. Anyway- also ask -are they contemplating an Allo for him?
You are so right that it doesn’t get easier, if anything it’s more complicated! The decisions seem much harder to make. I’m stopping now as I seem to be rambling!
Hi Ali, how’s your mum? And Andy any more Greek odyssey planned?
Love Helen

[andygParticipant]

Hi Helen.

Flights to Greece are booked. Middle of May all being well.

I’m off to read your post now so I will keep my questions and observations for there.

Every day is a gift.

Andy xx

 

[AliParticipant]

Hi Helen

Apart from low back pain, she says she’s fine! No treatment at present and next appt April. Nice hat…how was the wedding? 🙂

Work day so got to get up.

Hi Vicki and Andy
Love Ali xx

[VickiParticipant]

Hi all

Firstly helen, wow love your hat and the outfit. You look stunning!

Helen, I’ve been barred from asking loads of questions without prior approval by my other half……he says I go into over drive! It will be interesting to know about the lights chains v pp. We seem to be suffering a lack of information at the moment. They don’t seem to volunteer the light chain numbers unless we ask and no one has mentioned pp since he was told he was in complete remission first time round, but I will ask.

He’s been pretty rough since he had the treatment. After the two infusions he had a really bad head where he said his head felt three feet behind all the time. That was Saturday (missed my birthday meal) and the same over the weekend, then in bed Monday and most of Tuesday. Today up, back to bed, up then now back to bed,.,..so not great. Hope this is a good sign that it’s working. When he was on velcade it was like he wasn’t on treatment at all really other than a bit of tiredness. Not sure about SCT we need to get there yet!

Andy sorry to hear you’ve been under the weather with a short stay in nhs hotel! Hope you are feeling better now. How’s the pps? Any more news on the Sct possibility? Glad to hear you’ve got the hols booked, we are not able to go far at the moment. The medical team got twitchy even when Colin was not too bad so we haven’t bothered yet! Too cold.

Ali, glad to hear your mum is doing ok. Am I right in thinking she has spare cells in the bag so she was able to delay her Sct? How does that work…..do they just wait for signs of things going on the move the wrong way and then do the SCT? Hope all stays going the right way though!,

Vicki and Colin x

[andygParticipant]

Hi Vicki and Colin.

I hope Colin is coping better with the Bendamustine now and is getting the results we all hope for.

I don’t know how my PPs are at the moment. I’m a bit more laid back about my blood tests nowadays. So I only find out what they are when I see my consultant. Every three months! Well every twelfth week really 😉 I’m happy to leave it to the medics if I don’t hear from them my monthly tests must be ok. I’ve not had any more news about an auto SCT though my consultant came to see when I was in hospital and she said she was going to get in touch with the transplant coordinator.

Every day is a gift.

Andy xx

[HelenParticipant]

hi Vikki And Ali
The wedding was a lovely day, bride and groom never stopped smiling, can’t really believe it happened, all those months preparation and it was over very quickly, I had to slope off for an hour or so but managed to be there until the bitter end -about 03.45! It was great- as she is a singer of choral music she had lots of her friends there from national youth choir and the millennium youth choir so,the music was magnificent. Weather was good… No glitches really except we ran out of beer before we ran out of champagne,!! Clearly, I have given up drinking so there was a surplus!
Vikki, what was the outcome at the clinic? I’ve banned my other half from asking too, I’ve asked him if he has any questions and I might let him ask a pre-planned one, just so he feels included

[HelenParticipant]

Oh no half my post is missing! it went a bit like this!
Vikki, what was the outcome at the clinic? I’ve banned my other half from asking too, I’ve asked him if he has any questions and I might let him ask a pre-planned one, just so he feels included

[HelenParticipant]

and again!
Ali glad to hear your mum is doing ok at the minute, I’m awake late… It’s dex day today and I have numb feet, hey ho the joys of the treatment, but I’m not too bad overall, and as long as it works I will put up with it.
Hey Andy
Good work with your bloods, I’m on GCSF to keep the good guys going – so have to go every 2 weeks at the minute, sometimes I feel as though I live in that hospital!
Take care all
Love Helen

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