[tishwishParticipant]

Peter had his bloods and his bone marrow biopsy done today. Now for the long wait until next Wednesday when we meet the consultant to get the results and discuss the next treatment for his relapse.
The Macmillan nurse came yesterday and chatted to us both, got some answers to some questions we had, others will have to wait until next week.

Trish xx

[meganjaneParticipant]

Hi Trish,

The waiting for results is hard. I am glad you were both able to speak to a MacMillan nurse and hopefully next week you and Peter can have your other questions answered and find out more about the next step.

Megan

[VickiParticipant]

Hi trish

The waiting is so hard isn't it! Hope the results are as good as they can be. Plenty of reassurance and then knock the mm thing into touch x

Vicki and Colin x

[DizzylizParticipant]

Hi trish,

Fingers & everything else crossed for wed: the wait is like being in slow motion, hope all goes well and the news is good!

Thinking of you love liz & kev xx

[tomParticipant]

Hi Trish and Peter

Gosh I honestly hate the wait hate it even when I know am going to be Ok cos I fel greatbut the wait (for me) is always the worst.

Fingers crossed

Love Tom Onwards and Upwards xx

[willywinkiParticipant]

Just a quick update…..hope you dont mind mum 🙂

We went to see the Consulatant yesterday, and he confirmed the myeloma cells are active again, PP count was 18 so it is on the rise.

He was a bit cagey about giving exact results from Bone marrow biopsy, just said that they visually assess it as well as doing actual counts and he said they could "see" on the actual bone that it was active.

Next stage is Velcade…..8 courses, which cons said was 6 months but we cant figure that out as thought it was 3 weeks on treatment, 1 week off and that doesnt add up to 6 months????

He has his first Velcade injection tomorrow so we had a lovely take away curry and bottle of wine last night in case his appetatue goes to pot again like on the CDT

Vicki xxxx

[tishwishParticipant]

Thanks Vicki for updating……i dont mind at all. You have done it better than i would have done.
Indian and wine were very good

Love mum xxx

[meganjaneParticipant]

Hi Vicki, Trish and Peter,

When my husband Phil had Velcade last year the cycle was 21 days with two weeks on and one week off. The Velcade was given subcutaneously on days 1, 4, 8 and 11. If Peter is due to have 8 cycles this would add up to the six months. I hope this helps.

I'm glad you had a nice curry and wine but you may find that Peter's appetite stays okay. Phil did not have any problems with sickness or loss of appetite on Velcade but please do watch out for the peripheral neuropathy. Phil now has this in his feet and it is very annoying. If Peter notices any feelings of numbness or pins and needles in his feet or hands please let the consultant know as they can adjust the dosage. Not everyone gets this side effect so you may have no problems at all 🙂

Good luck and keep us posted.

Megan

[willywinkiParticipant]

Hi Megan

Thanks for your message, how is your husband doing now?

The timings you have given make more sense 🙂 Maybe we misunderstood mum?

It's reassuring to hear you say Phil's appetite wasn't hugely affected, dad will normally eat anything, but the CDT really put him off certain things and it changed sometimes daily what he could or couldn't eat. Fingers crossed!

Dad already has peripheral nueropathy from the CDT. He has it in his hands and feet. The consultant said yesterday that it doesn't neseccarily mean he'll suffer more with teh Velcade, so we'll stay optimistic.

Vicki xxx

[DaiCroParticipant]

I'm glad that you two concur… a family argument might have made good drama but overall I'd rather settle for agreement. :-0

I'm sorry that the relapse was confirmed but the medics are on the ball with the Velcade starting right away. I seem to recall that the best results for Velcade occur in the first couple of Cycles… then it settles down with a flurry of positives towards the end of treatment. 😎

I started treatment with my Light chains at about 120 and a secondary tumour on my sternum… the tumour had disappeared and my light chains were down to 0 after only 2 Cycles. They stayed like that until the 5th Cycle when they were declared in complete remission and treatment stopped. In hindsight I should have pressed for the agreed 8 Cycles to hammer home the results because the complete remission relapsed after only 6 weeks (although the next treatment didn't start for over 3 months).

Velcade is a treatment but not a chemotherapy… it is usually accompanied by Dex but the side-effects are not the same as chemo based treatments and therefore your appetite might not be affected (mine wasn't) but we are all different so don't treat anything any one else says as gospel… but the experiences of others are a good guide. 🙂

I wish you all the best… ask away however trivial your queries may seem to you. 🙂

Regards

Dai.

[meganjaneParticipant]

Hi Vicki,

Phil is doing very well thank you. His initial treatment was on the PADIMAC trial which was six cycles of dex, Doxorubicin (chemo) and Velcade. The six cycles brought his paraprotein down from 32 at diagnosis to 5 by the end of cycle six. Phil had his auto stem cell transplant in December/January and his paraprotein is now down to 3. The next test of the paraprotein will be at the end of March at his 100 day assessment so we are keeping or fingers crossed for an even lower result then.

Phil actually found that he ate more while on treatment, possibly due to the dex 😀

Sorry to hear your Dad already has neuropathy, it is so frustrating that the drugs that help you also hinder you!

Megan

[tomParticipant]

Hi Vicki,Trish and of course Peter

Sorry it's a relapse situation but am sure the veil adze will kick it into touch.

Stay well and keep us posted

Love Tom Onwards and Upwards xxxx

[VickiParticipant]

Hi Vicki, from another one, trish and Peter,

Sorry this is a definite relapse. What a blow, however everyone seems so positive about this velcade that its got to be a winner. I hope that the response is a speedy one and then you can enjoy many more happy nights of curry and wine 🙂

Onwards and upwards as Tom would say!

Vicki and Colin x

[tishwishParticipant]

Hello everyone

Peter has started the Velcade treatment today…………paperwork signed sealed and delivered. First injection given in the tummy and came home with steroids, anti biotics and allopurinol, 12 tablets taken when we got home. Peter is now sleeping. Back to the hospital on Monday for 2nd injection. We now fully understand the 21 day cycle.

Love Trish xx

[tomParticipant]

Hi Trish

Well tell Peter Good Luck from me please and I hope it runs a smooth course and is gentle on him.

Stay well Peter

Tom Onwards and Upwards x

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