[KeithH17Participant]

Hi everyone…Completed 4th cycle of Velcade Mon and saw doctor for a review today.
PP's down from 7 at start of treatment in Jan to 3.65 at present.
This signals that the MM is responding to the Velcade and treatment will now continue for the 8,cycles at which point SCT will be discussed.
I have found the last 2,cycles much tougher than the first but still much easier to tolerate than VAD which was my previous treatment.
I don't have any taste and I had the DT's last Thursday when I felt really rough,but the P/N and hand/foot spasms have settled down since the dose was reduced.
Hope everyone else is having a positive experience from Velcade and getting to grip with this horrible disease?

Good health to all…Keith.

Posted in wrong area(appologies):-/

[GillParticipant]

Hi Keith Stephen (husband mm person) is on Velcade at the moment. He is hoping to go for a second SCT later this year. He get's very, very tired on the Velcade and of course the Dex that goes with it is not a pleasent experience.

Stephen's taste has certainly suffered and the only thing he can get some idea of flavour with is spicy food, curry etc OOPS not a good idea on the medication:-( upset tummies are not nice. Keep in touch, all the best Gill

[DebsParticipant]

Hi Keith,
So glad to hear that you have responded. Gosh it has really made me realised just how different we all are with our MM. My pp's went down from 50 to 27 on revlimid and they didn't class it as a very good response!!!

Am now on the velcade and on week 3 of my first cycle. The first two weeks were problem free bar ABSOLUTE exhaustion on certain days and an emotionalness that I didn't think I was capable of! I seem to have just developed the funny taste too and am a bit nervous I might be starting to see small signs of periperal neuropathy….the tops of my toes feel like someone has stamped on them/ burnt them…does that sound familiar to anyone?

Anyway, nothing at present that I can't deal with and even the kids are getting used to me falling asleep around them!!

Good luck all.
x

[mhnevillParticipant]

Hi Debs

Hope you have told "them" about your suspicions of nueropothy as everything i have read, especially of US site, says tell folk soon as you might need to decrease dose.

PN is something I really worry about when I have to start treatment as I alreaady have some nerve damage.

Yes, I agree with you – use of PP numbers seems very different with different people. Mine is now 8/9 and my Consultant is agreebable to me waiting and seeing! I am in no hurry to start treatment.

Deabs, all the best to you. Keep smiling and praying.

Blessings.

Mavis

[susannahParticipant]

Hi Keith Really good news to here that Velcade is working for you

Best Wishes
Sue

[mhnevillParticipant]

Hi Keith (Via Gill – aren't our carers wonderful!)

sorry to break into your post to reply to Debs.

Do hope your second half of Velcade plus goes more smoothly and gives you a good preparation for you eventual SCT.

All blessings to you both.

Mavis

[tomParticipant]

Hi Keith

Pleased it is going good for you 🙂 as formeav got to grips with it on Good days:-D and am not having any treatment Cept Zometa infusion:-S

and Debs as for the feet mine also but thankfully no pain some time they just feel fatter:-/ or that I have something under my toes like wool:-0

And Gill ur comment ::::::::Stephen (husband mm person) made me laugh that I nearly woke Baby Max up ha ha 😎

Have a good w/end you all Elaine (my young bride) and I are baby sitting all night, one 3 year old and one 7 weeks old 😀

Tom

[keenParticipant]

Hi Keith,I have just come back to the site and was looking for something from you to know how you were getting on. You were one of the first I read about on Velcade.Don't know if you have seen my recent post but I have just finished 6 cycles and have plateaued at 11 so no point in having any more Velcade. Would like to know how you are getting on, hoping all is going well for you. Sylvia

[KeithH17Participant]

Hi Sylvia,I did the full 8 cycles and had my 2nd SCT last month.
I was discharged from hospital 15th Aug and now recovering at home.
I contacted E-Coli while in hospital and was quite ill losing alot of weight which I don't have much of to begin with LOL.
I'm just about starting to feel more like my old self but still need to be careful in case of infection.
The only medication I take at the moment is an anti virus tablet which I will need to continue for 3 months.
My blood counts are starting to rise to near normal levels so all in all things are going to plan.
I felt alot weaker this time and the E-Coli did'nt help.
Let me know how you are doing Sylvia and if you need any advice then you only need to ask.

Take care…Keith.

[PerkymiteParticipant]

Great to know you are on the mend Keith, keep going buddy.

Kindest regards – vasbyte

David

[brochoParticipant]

Hi Keith great to hear you are still going strong! It wont be long before you feel fully back to your old self! love Bridget x

[keenParticipant]

Hi Keith, I am so pleased to hear from you and know that all is progressing well, apart from the tiredness. I think you are very brave to have SCT and it seems lots of people have it more than once. I am waiting for an appointment at Barts and dreading them suggesting SCT or a trial! I am such a coward but I guess if my MM is aggressive I might have to go down that path rather than the more usual step 3 drug, the name of which I can't remember.I'll let you know how it goes but meanwhile I am hoping you get a really good outcome and are soon back to your old self. It will all be worth it then.Sylvia

[mhnevillParticipant]

Hi Keith

Good to hear news from you. Sorry about the infection, but hope you make steady progress now.

All best wishes.

Mavis

[CarolBradley1Participant]

Hi Debs
Just to let you know I have been on Reblimid for three months and like you, am exhausted and the nerve problems in my feet and hands are annoying and uncomfortable – also have tummy upsets etc. etc.
Just returned from a couple of days in Spain during which time I had to stop the tablets as I just felt so absolutely rotten. It wasn´t entirely unexpected and I don´t think it came as a surprise as my specialits had already talked about my having a rest as my symptoms were becoming a tad grim and my paraprotien has dropped to 0 at present.
Hope you manage to stick it out longer from me and that your symptoms settle down shortly.
Take care
Love Carol xxxx

[DebsParticipant]

Hi Keith,

Glad to hear that you're out of hospital and on the mend! It's a good feeling isn't it?!

I was also quite ill…from day 1 sadly….and lost over a stone in weight. Luckily, unlike you, I could afford to lose it as it was all weight I'd put on while I was on the Dex. So for me it was the one positive that I got out of the whole experience!!!

I'm about 10 days ahead of you and am finally seeing the light at the end of the tunnel….I hope the same goes for you soon. It is hard feeling weak and tired all the time isn't it.

All the best
Debs x

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