[zasrsParticipant]

Hi Kieth

Good luck with the the pomalidomide, gordon was on a revlamid trail which gave him two good years without mm ( apart from the the b dex). He also had velcaid + dex prior to the last transplant and reponded well though his platlets dropped after each treatment.

Keep us posted and Gaye please let us know how things go it is great there are so many drugs out there just hope we can get hold of them!!

Sarah

[PerkymiteParticipant]

Good luck with the Trial you two I hope all goes well.

Kindest regards
David

[MinParticipant]

Well Kieth by now you will have had the 1st of your velcade and dex and will know all about the routine. Or lack of it, Peters first velcade was quite disorganised. He has his last one today, and mostly felt quite good and looks really healthy, belied by the fact that the velcade no longer works effectively!
The problem he had was after the second dose he had the most dreadful period of breathlessness, which when reported was poo pooed as a side effect. It took some time to get a D Dymer blood test to prove he had blood clots in his legs and lungs. Please be aware of this if you get breathless. He is now on daily heparin injections for the next 6months for thrombosis.
Otherwise no side effects to mention, when his platelets dropped he was told he may need transfusions but they never got below 50 and on the 10day break from meds,they recovered back to near normal.
Good luck
MIn

[GayeParticipant]

Hello Keith – Oh you old smoothy Geordie with all your lovely compliments. How can a girl resist them! And then that Luton Minx who masquerades as a ciggy-smoking mother whale just waltzes in between us, without any by your leave. I mean Keith what on earth is this world coming to – tsk, tsk!

My experience with velcade and platelets has been fine. No need for any infusions first time and only very rarely during the second time. However, I am certainly making up for it now whilst I am not on any treatment but hopefully you will be ok Keith. Just get stuck in there and fight the beast. I had my velcade/dex in the same way as you will have and like you have just been transfered from bonefos to pamidronate (in your case zometa). I wish you well.

Thank you everybody for your replies – you've been great. Like you all I didn't ask for this disease but I also decided at the beginning that I wasn't going to give it an easy ride. What else can we do?

Love to you all.
Gaye xx

[DaiCroParticipant]

I wish you all the best for the trial, both of you.

You are an inspiration Gaye, whether you like it or not (but I suspect that you like it really 😉 )

You have been a rock for me since I joined this gang and I truly appreciate your selflessness in sharing, guiding and generally bucking up.

Whenever we are feeling :'-( you always offer a 😀 and a 🙂 with an occasional >:-).

We need you sister. 😎

Dai xxx.

[GayeParticipant]

Dai- what can I say to those lovely words – simply thank you.
Love, Gaye x

[AmelieParticipant]

Just want to send you my best wishes for a great result with the pomalidomide.
Love
Amelie

[KeithH17Participant]

Hi Min,yes I've had the first one today so the ball is now firmly in play.
When you say second dose don't you mean second cycle.
Also now the fact the Velcade no-longer works(did it ever work)what is next down the line for Peter's next treatment?

Thank-you for your helpful replies.

Keith.

[KeithH17Participant]

Oh Gaye,I can forgive the fact that you called me old but NEVER a Geordie.
I was born 13,miles south of the Tyne and that makes me a Makem and proud of it.
And I will be giving my team Sunderland all the support I can muster for the Derby on Sunday against the Geordies of Newcastle.

But I'll forgive you on this occaision lol.

Anyway had the first one of many today with the next being on Monday.
I'll be keeping an eye on the side effects and will keep you all posted.

Hope your new treatment works well for you…have you got it yet?

Take care of yourself…..Keith.

[MinParticipant]

Hi Keith no I did mean the second dose or second injection three days after the 1st.
It took some weeks before it got really bad enough to complain in loud voice and be heard. But as he had managed to break his hand that seamed to be a bigger priority.
And it did work for a while; at first there was no response; then a few cycles later his light chain figures which had gone ballistic where halved to 3500. Now they are back up to 5900. His other bloods are spot on, he looks really well!!! Probably the best I have seen him in a while. He feels quite good apart from the back pain and occasional cramp. Its so odd. They plan to try revlamid but we will find out more a week Tuesday.
Ok so your not a Geordie, but those people 'down south' (spoken with an odd accent) don't know what a Makem is! I [b]am[/b] a Geordie born and bred.:-| Live near to the Ferry on the Tyne. do you go to the Freeman Cancer Care Unit.? Peter was getting his velcade on Fridays and Tuesdays. He is now off it all but will be having his Zometa On Tueday in ward 36.(Day ward) I only ask as we meet people from Cleveland and Teeside there and cant believe they are driving past one in sunny sunderland.
I also cant believe you will be wasting your money watching that overpaid lot on Sunday. Especialy after we beat the sh** out of you last time LOL.
Wrap up well for your match and don't shout too loud!
Min

[GeorginaParticipant]

Hi Gaye

As others have said, I have really valued your posts on this site and all the information, advice and encouragement you give.

Good luck with the new treatment and I'll have my fingers, toes and everything else crossed for you.

Will be thinking of you. Keep us posted.
Georgina xxx

[KeithH17Participant]

Hi Min,Now I'm going to confuse you,I have my treatment at North tees Hospital in stockton.
I had RT at James Cook Middlesbrough but my SCT at RVI Newcastle.
Reason being although I'm Sunderland born work and then Marriage drew me to Smoggie Land lol.
Anyway if you think you have a chance of beating us dream on,wont happen.
I had absolutely brilliant treatment at the RVI,they really looked after me there and Jane Conn is lovely.
Only downside was when being discharged and I went through the doors looked up and to my horror there it was the prefabricated monstrosity they call Sid James park…sorry Min could'nt resist that one:-D

Unfortunately I can't make it in body on Sun but my heart as always will be there cheering the lads to a win.

I do hope things work out for Peter and you both get some respite from this horrible disease.

Lookafter eachother…..Keith.

[tinkerbellParticipant]

Gaye,
I am so glad that you have got this new drug which I'm sure will work wonderfully for you. Fingers crossed that the drugs arrive and you get to start next week. This is a step in the right direction for us all so thank you for advancing the fight against this disease. Will be thinking about you.
Pamela xx

[MinParticipant]

Good heavens Kieth you do have to do some travelling for your treatments. Jane Conn did peters harvest and transplant and we see her most visits to ward 36, she is truly lovely woman as are all the staff. Peter had his Bypass done in RVI and they were great too. How long did you stay in after transplant. Peter wa:-| s out the same day and lately I have wondered if this hastened his relapse.
I am in warwickshire for the moment, traveling home tommorow when the match is on not that I care one jot in reality how they do.
I do care that you do well on velcade and stick with it. Good Luck for the results keep us up to date.
Min

[susannahParticipant]

Hi Gaye and Tina Just wanted to wish you Gaye and Patrick all the best I have always followed your posts closely,as we know only to well that we could soon be in the same boat. Pomalidomide is this a thalidomide based drug, ive not heard of this one? Michael and I are back at the hospital tomorrow his monthly visit for Revlimid (we hope)

Good Luck
Sue

[Author]

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