[PerkymiteParticipant]

I saw the Consultant today. I knew that myeloma was on its way back, my PP?s have gone from 10 to 17 in 6 weeks. So I am now an official relapsed Patient. We are going to start on Velcade with Dex on April 15, two doses (Tuesday and Thursday) each week for 3 weeks and then a week?s break. I shall be seeing the Consultant at the end of each set, 8 cycles.

For the techies amongst us my blood measurements are; Platelets 239, Neuts 2.7, Para Proteins 17.1, White blood cells 5.6 and H/Glob 105.

I will keep you all informed as I progress.

Kindest regards- Vasbyte

David

[EvaParticipant]

Hi- I'm on my third cycle of Velcade. I've tolerated it fairly well- but it hasn't made a big dent in my paraproteins. My consultant was concerned, but my freelites have normalised beautifully. I think I'm a difficult one to track becase I am only secreting abour 5g/L when in full relapse. My original paraprteins were only 14g/L and during my first relapse( plasma cells over 70 % and broken arm): my paraprotein was only 2g/L and you could follow the illness with freelites, bone marrow biopsies and PET/CT scans as well.
Anyway, getting back to the Velcade, it was enhanced with dexamethasone and cylophosphamide. I get very tired the day after the Velcade and have a big sleep. The first two weeks I had a headache, a slight welt in the stomach where they did the subcutaneous injection,
but no big deal. Peripheral neuropathy very much under control.
I take anti-nausea mds for the cyclophos, something called Zantac for the steroids- do not take them on an empty stomach ever- they are potent stuff. They kick in about fourteen hours after taking them. You may need to consider what's best for you when it comes to timing. I got up today at four am and took mine so I'll be alert in the evening rather than staying up all night, though I sometimes enjoy an all-nighter if I've got good things to do and the house is quiet. And of course, a couple of days later, the steroid withdrawal comes and I have trouble walking about.
The main thing I'll say is not to suffer unnecessarly. I take pain meds, digestive sfuff, as Velcade can create two days of havoc with constipation or otherwise; I even take a sleeping pill if I can't sleep at all. Wuss, eh? Life can stil be good on Velcade- I did a trip to London on my last week including a sixteen hour bus trip and managed it. I'm still very much enjpying my food, doing my art work, and meeting new people and watching the Spring arrive in the Highlands.
Good luck.
Eva

[tishwishParticipant]

Hi David

Sorry to hear that you too are a relapsed patient. Wishing you well on your Velcade journey. Peter has started cycle 2 today after been of it for 3 weeks due to suspected chicken pox (blood test show it to be a no but even the doctor today, 4th different doctor, still feels it was chicken pox !!! Chest infection, cough and a virus. However today we got the go ahead we needed. Treatment is same as Eva. Peters bloods are hb 11.8 wc 4.3 pl 122 neauts 2.49 PP 18

Trish

[tomParticipant]

Hi David
Sorry to hear about your relapse 🙁 just remind me how long was it since you had SCT (me brain has gone??)

Good Luck with the Journey with the "Velcade" and I hope its gentle with you.

Vasbite, Onwards and Upwards Tom

[DaiCroParticipant]

Good luck with the Velcade David, I had mine in the bad old days of Cannulas and my veins are a bugger to find at any time so finding a suitable site included a lot of fun and games… so sub-cut sounds like heaven (I have been taking Clexane daily – self administered at home – for20 months, so I am used to moving them about. 🙂

General fatigue and PN were my worst side-effects, no nausea and the fatigue was not that bad… but the PN on top of that caused by the Thalidomide in my frontline CDT was my worse enemy and although I was told it would wear off in time, over 18 months later it is still bad but settled, if that makes sense. Not everyone gets it and if you had Thalidomide in your frontline treatment and didn't get it then there is a fair chance you won't get it from its cousin. 😎

Best wishes for your treatment and I hope you get the full whack of remission (12 to 18 months I believe).

Do you have sufficient Sten Cells for a 2nd Transplant? I can't remember.

Best wishes 🙂

Dai.

Hi Eva,

My Dex kicks in within 2 hours, is at full force within 4 hours and dies away at 15 hours. Sometimes I set the alarm for 6am to take them early but I have learnt to take them at 8am generally because the day is a write off for going out and about as my permanent side-effect is sweating, with changes of tops on average 6 times in the fist 10 hours. I once had to go into clinic on a DexDay tm and the phlebotomist though I was having a heart attack with the copious sweating and beetroot face. 😀

Regards

Dai.

[PerkymiteParticipant]

My journey so far with myeloma has been.

Broke my neck getting out of bed July 2009. Diagnosed MM Aug 2009.

Put on CDT (I did get some PN mainly in the feet ? spongy foot I called it)

Had real problems getting enough Stem Cells for a SCT but finally got 2 mill ?just ? in Oct 2010

Had my SCT in Nov 2010 ? Out just in time for Christmas –

Started to relapse Jan 2013

Start 2nd line on the 15th Apr 2013 Velcade and Dex (no Cyclo?)

Thanks for the info one all.

Kindest regards ? vasbyte

David

[HelenParticipant]

Hi David
Good luck with the Velcade, I hope it works quickly and well for you. Do keep posting about your velcade journey.
Love Helen
Ps how is your garden? Any sign of those bulbs you planted? Mine's a mess!

[jmsmythParticipant]

Hi David

Just want to add my good wishes to you on your journey with Velcade. I hope it's good to you

Love Jean x

[bandityogaParticipant]

Hi David

So sorry to hear that you have relapsed. Hope all goes well on the velcade.

Maureen

[VickiParticipant]

David,

Just wanted to say good luck with the second line of attack….keep your chin up 🙂

Vicki and Colin x

[tomParticipant]

Hi David
Hope your doing well with the treatment and this "Sun Thing" isn't too much of a bother for you.

I recall now that you had your SCT about 11 months after me.
Stay well and Fit

Vasbyte and Onwards and upwards
Tom

[mhnevillParticipant]

Hi David

You are always so encouraging to everyone else so wanted to send you my very best wishes. Do hope the Velcade does the trick.

Love Mavis x

[TinaParticipant]

David,

Just wanted to wish you all the best with Velcade.Make sure you keep posing as it would be very dull without you!:-D

[petesilverParticipant]

Hi David
When I had my 8 cycles I remained in remission for 4 years which came to an end last year, now 5 cycles of Revlimid seems to have got me there again.
All the best for your Velcade treatment hope it goes well.
Regards
Pete

[Author]

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