[DaiCroParticipant]

Hi All,

My first 2 Cycles of Velcade were of the normal status:

Wk's 1 & 2 infusions on Mondays & Thursday followed by a rest week. (3 week Cycles)

Starting with 3,080 Free Light Chain's, dropping to 380 after Cycle 1 and a further drop to 39 after Cycle 2 😎

We then swapped to once weekly infusions for 4 weeks followed by a rest week. (5 week Cycles)

Starting with 39 FLC's we climbed to 187 after Cycle 3 and a further climb to 289 after Cycle 4. 🙁

Not too dramatic but it was felt that I should go back to the 3 week Cycles to give me the best chance of the Velcade being used effectively. 😎

Now the last time I was in for my consult the stand in consultant (my usual consultant on holiday) told me it was my call… I asked my regular consultant if this was still the case, to which she replied that it was but she had not quite finished. 🙂

She wanted to go back to the 3 week Cycle because while it took 6 weeks off my treatment schedule, it gave the best chance of controlling the FLC's and may well bring them down… and this was important because another of my regular consultants was working to get me onto a Pomalyst (Pomalidomide as was) trial at the end of this year. 😎 🙂 😎

The 3 week Cycle would finish at the end of November, which fitted it with the trial if Consultant 2 could get it set up. I gathered that the trial, at this time would only have one trialist on board… i.e. me. 😎

So I readily agreed to dropping back onto the 3 week Cycles of treatment.

Watch this space… while I hope that efficacy of this form of treatment is as good as the first time and brings the FLC's under control, or better still brings them back down. 😀

Regards

Dai.

[eveParticipant]

Hi Dai

We have the trial at Canterbury,Pomalidomide with either high dose or low dose Dex and reading up on it there is no criteria;-) 😎 🙂

I think this will be the next one for Slim,as the BMB was a bit wishy washy,the sample showed clumps of cells,so they think overall it might have gone Down from 30 to 25 percent,consultant has kept him on CDR,bur cycle 3 took a battering of his bloods,picked up on rest week,starting cycle 4 with nuets 1.1 platelets 65 WBC 2.3 potassium 2.9.

So you never know we might be comparing notes!!:-P Eve

[tomParticipant]

Hey Dai

Good Luck with it I hope it works its little wonders on you again.
And I for one will be watching 😀

Good Luck

Tom Onwards and Upwards

[VickiParticipant]

Hey Dai

That's great. The special one is Dai….not Jose mourinhio! Chelsea manager sorry rubbish at spelling 🙂

Vicki and colin xx

[BADGERParticipant]

Good Luck Dia

you are the pathfinder we will be watching and hoping all this works the longer its held off new drugs come along all the time
Big Hugs Jo x

[bandityogaParticipant]

Good luck Dai. Hope you do well on the trial.

Maureen

[jmsmythParticipant]

Best of Irish luck Dai >:-) hope everything goes well
Jean x

[PerkymiteParticipant]

Best of luck Mr Guiney Pig 😉 , I mean that in the nicest possible way 😎

Kindest regards – vasbyte

David

[DaiCroParticipant]

Thanks to all for your encouragement and support. 🙂

My lead nurse confirmed today that my consultant was attending a trials preview for Pomalyst in the next few weeks with the possibility (strong but still a possibility) that a trial of sorts might be beginning before the end of the year. So I need my Velcade to either plateau, or better still reduce, my Free Light Chains before the trial is set up. 😎

The change back to twice weekly infusions from once weekly was confirmed by my 2nd infusion today… any side-effects etc., will be noted but whatever, however, I will put up with anything as long as my FLC's are brought under control. 😐

Good news for Velcade users. My hospital are now having the Velcade made up with a refrigerated life-span of 7 days… allowing 2 batches to be made up at a time and kept in the Day-Case Unit. This means no further waiting for the juice to come down from the pharmacy. Hopefully coming to a Day-Case Unit near you soon. 😎 😀

Dai.

[eveParticipant]

Hi Dai

This new trial,!!! Wondering if its different than the one I have heard and seen on this site!!!.

If you go into trials on here it tells you all about it,I know about it because someone mentioned it at the hospital, Slims consultant has never mentioned it,but I know he wants to give the Revilimid a good try,although the BMB was patchy!!!!
I suppose because options are being used up fast.
Slim hits rock bottom over 3 weeks,with fatigue unable to do much,bloods are frightening,has a week off ,but it takes that time to recover,then it starts again bloods,plus he is only on Revilimid every other day. When you were on Revilimid what was the dose ????He only gets out with me pushing wheel chair,but he has agreed to have a small scooter.

When I looked on here Canterbury is down for trials,no criteria,but it's Pomilidomyde ,low dose or high dose Dex. Are yours the same.!!! Eve

[DaiCroParticipant]

Hi Eve,

Yes, it looks as if the trial will be based on Pomalyst, TM (Pomalidomide as was) but we have no dates as yet.;-)

I reverted to twice weekly last Thursday and it was not pleasant… I spent the whole week-end feeling really grotty, which was was not helped by my missing a complete pot of meds on Friday morning… giving me flu symptoms, an upset tummy, running tap diarrhoea and a spaced out mien for 12 hours or so. This is the 5th/6th time I have done this in the past 4/5 years and it is most unpleasant. Janet brought me B in B because she was off to her hairdresser's early and although she had handed me my meds bucket, I had put it back on the dresser when I went to the toilet. A silly mistake of memory and routine and I paid for it. My next meds were due at 8pm but they take a good 4 hours or so to start their time release into my system… ho hum.:-)

I hoped Sat/Sun would find improvement but very little all told and I felt absolutely bushed this a,m, when I went in for Inf:3 of 4 of Cycle 5. In bed now and totally whacked… last Inf: of Cycle 5 on Thursday and then 10 days recovery… hopefully I'll get some relief in there and adjustment in the next/last 3 Cycles of the treatment… with some good bloods results amongst them. 😎

I know that the once weekly infusions didn't hold the FLC's down but I sure felt good.:-D

'Whatever It Takes', Onwards & Upwards, Vasbyte.8-)

Dai.

[eveParticipant]

Hi Dai

It's easy done,I constantly remind Slim about his tablets,it's called nagging;-) ,but the minute I do not,he forgets mainly the pain killers,and he pays the price,but as the treatment grinds him down,he is not with it at times,but he will not let me take over his meds.

Saying all that,he seems a little better,compared to the last 3 months,his bloods are at such a low level,but he is not going down hill after the Dex,so that's a bonus,Slim has the problem,they cannot tell how he is doing!!?,8-) so when he is very ill it's such a worry,one time the consultant asked me,why he was so ill,do not think he likes to see patients,who look like deaths door in day clinic,puts people off:-P

I am going to have to have more faith in the consultant,I know Slim is unusual and a bit of a challenge for him,he was of two minds,about treatment,because its knocking his bloods ,on rest week his nuets were 0.3 but picked up by the time bloods were taken to 1.0,if he remains on Revilimid he will automatically go on maintenance until it stops working:-)

I found another trial which is CDP,so there are two trials running,I do not know if you read any blogs on Myeloma Beacon,I have been reading JM blogg,mainly because she is the nearest I can find who is exactly like Slim,.plus it helps to know what's in the pipe line,and I like the way doctors will answer questions on forum,we could do with that on myeloma UK,as some answers cause confusion .

At least with all your experience ,when thing go wrong,you know the reason why. Love Eve

[EvaParticipant]

Dear Dai,
I know some of what you're going through as I've just had a very extended period on Velcade plus extras. 'Whacked' doesn't begin to cover it. They've taken me off it and in one week I have gotten some of my energies back. Like you, I'm heading for the unknown and need a big confab with my consultant.

Best to you and Janet.
Eva

[PerkymiteParticipant]

Loved the last line Dai, [i]'Whatever It Takes', Onwards & Upwards, Vasbyte[/i] 😀 😀 Good on you.

I was pulled off Velcade because of severe PN, mainly in my legs. It is hard to explain, they are not painful as such they just feel very, very uncomfortable all the time and I have to get up during the night to walk about a little bit to settle them.

They also thought at the time that Velcade having taken my pps from 17 to 8 was not holding the pps down. They had gone from 8.0 to 8.4 and whilst not a big jump up, coupled with my legs taking a bashing the consultant said they would move me onto 3rd line. Revlimid.

I have my bone infusion today and my Assessment on Friday when I believe the Revlimid should start.

Best of luck

Kindest regards – Vasbyte

David

[eveParticipant]

Hi David and Eva

David just to wish you luck with the Revilimid ,,Slims on his forth cycle but only has it every other day 25m,usual regime of CDR but reduced Dex as well.Still do not know if its doing the job,but Slim does seem a little better this month.

Eva entering the unknown!!!!,have you had all usual treatments!!,are you young enough to think of another SCT or are you just weighing the optiona availabil to you?????
Any way good luck for your consultation,hope they can come up with something for you. Love Eve

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