[GayeParticipant]

Hello to you all and whilst I haven't been posting I have been reading most of the posts and keeping up to date with you all.

I have had a difficult few weeks and like many of you am in a great deal of pain in my back. I had almost forgotten how awful this pain is but I certainly remember now! Like some of you I am having an MRI and then RT soon so I hope it will bring some relief.

I am in the category of having had all known treatment and was originally going to try for the pomalidomide clinical trial in Spring. However, spurred on by Tina and Patrick's experiences, my consultant and I decided to go for pomalidomide under special circumstances and we heard from Celgene in the US today that it has been approved and that I start treatment next week.

I am pleased as you can imagine. Right now I have nothing to lose so I shall go for it in the hope of some more time in this precious world. I just want to tell you this so all of you know that other drugs are coming on-stream and to hang on to that as you make your journeys.

Love, Gaye x

[PerkymiteParticipant]

Well done Gaye just keep going. No doubt we shall all be interested in your progress so please keep us posted. Just what is Pomalidomide though:-S ?

kindest regards

David

[brochoParticipant]

Dear Gaye sorry you have been having a horrible time , like you I had forgotten how bad the back pain can be , I hope you get your RT soon Great news about the Pomalidomide hers hoping it will blast the lousy mm to smithereens so you wont have to worry about treatment for a long time Happy new year Gaye love Bridget x

[GayeParticipant]

Thanks David and Bridget. I will keep you up to date. David, Pomalidomide is a derivative of Revlimid (Lenalidomide) and is taken orally along with dex. Although it is in use in America it has still to receive its licence in Europe but I think third stage trials are going on soon so hopefully it will be available in the not too distant future. It felt strange knowing my application was being heard around a table miles away in America but thankfully they agreed.

I am glad you are doing so well David and Bridget I hope you can start your RT soon to get some relief from this poxy pain!

Lovee to you both, Gaye x

[BADGERParticipant]

Hi Gaye
when I went to the myeloma open day in London there was a lecture from a visiting proffesser from America, who spoke about varius treatment and Pomalidomide was one of them he said that the results were very positive sometimes on their own and some times combined with a steriod he seem to think it was going to be one of the next best treatments to come on stream after revlimid so I think you are pretty lucky to get it as it is not licenced here yet good luck with the treatment and I hope they sort your back out soon you can feel a bit more positive if free of pain

Keep well Love Jo

[tomParticipant]

Hi Gaye

I also am sorry to hear you have been under the weather of late 🙁
But am very pleased to hear you ar getting some NEW stuff to help batter this bloody MM Good Luck on that (sounds Good)

I know you will keep us posted

Love Tom xx

[KeithH17Participant]

Hello Gaye,just read your post and hope everything goes well for you.
This question of pain and the way it is approached by different doctors beggars belief.

I have relapsed after 2yrs 8mths and have terrible pain in my ribs and left shoulder blade for the last 10,weeks.

My proteins are at 7 and the BMB showed the MM has become active again.

I start Velcade with Dex on Friday but no RT which I thought I would get.
I was told that the Skeletal only had slight changes from the last one and no further bone fractures but there were some new lesions.

Maybe the Velcade will take of this so RT is'nt needed?

Does that make sense to you gaye?

I would say that the pain has eased a little over the last 2,weeks without any treatment so RT may not be needed this time.

The other thing is I have'nt had an MRI this time.

Take care…..Keith.

[GayeParticipant]

Dear Keith – I have been following your posts and really am sorry you have relapsed. The b****r always manages to catch up on us however long it takes. So you will be on velcade and dex. Keep an eye on the likely peripheral neuropathy. After my first treatment with Velcade of 4 cycles I had no neuropathy but on my second course of Velcade it started up after 4/5 cycles. I know that Dex has helped pain in the past and with the combination of Dex/Velcade this may well get rid of the pain particularly when the treatment starts working. Hang on in there Keith I am sure it will deal with your pain.

Hopefully I start Pomalidomide next Monday provided the drug arrves from America in time. Right now I just want to be rid of this awful pain in the ribs. Anyway, good luck Keith.

Love, Gaye x

[TinaParticipant]

Dear Gaye,

Very happy to hear you were granted use of the Pomalidomide. Ad=fter one year of partial remission on Bendamustine the devil within has again raised it's ugly head. As you know Patrick is in the same boat as yourself and will be starting Pomalidomide in the next few weeks. His paraprotein and calcium levels have taken a dramatic rise over the past week and he also has had an increase in pain.He survived swine flu over Christmas and was doing well until this bolt out of the blue. Good luck to you with the Pomalidomide and I hope your pain improves very soon.
Love Tina

[GayeParticipant]

Dear Tina – thanks so much for your post. I am sorry that Patrick has had a relapse from Bendamustine and now he too is going on Pomaldomide. It seems we will both be working with it and I hope it brings good things for us. It's strange to look back to my diagnosis in 2004 and realise that I was on clinical trials for both Velcade and Revlimid and now Pomalidomide under special circumstances. Prior to Velcade I don't think there were any new drugs for myeloma for some years. Now it seems as though things are moving in the right direction. Let's hope that myeloma will eventually be beaten but right now we are part of the process of finding that cure.

Patrick really has had a rough ride yet he comes bouncing back (well maybe not exactly bouncing) for another go at myeloma. I think it is sheer bloody mindedness that keeps us going but long may it continue. Please tell Patrick that he and I seem to be two of the pathfinders for the next new drug Pomalidomide and I wish him (and you) all that I would wish myself. Let's get cracking!
Love, Gaye xx

[brochoParticipant]

Hi Tina so sorry to hear Patrick has had to come off Bendamustine .Heres hoping Pomalidomide does the trick for him and Gaye too , they are the trailblazers Love to you both and heres hoping this will be a good year for you both Bridget x

[KeithH17Participant]

Hi Gaye,I know I've said this before but your attitude to the Myeloma challenge is second to none.
I know I get inspiration from you and no doubt so do many others.
Right that's the patronising bit over lol,and now a question.
When you were on Velcade did your Platelet levels drop and if so did you have any transfusions?
The Consultant told me that this is a common problem with Velcade along with PN.

Also how was your treatment administered?
Mine will be given at the Hospital through a drip and the Dex taken at home
as far I am aware.
I will be going onto Zometa once a month instead of Bonefos which I take at the moment.

Thank's Gaye MM will never meet a tougher adversary….

Keith.

[brochoParticipant]

Hi Keith I was on velcade recently and my platelets did drop quite significantly Its monitored via the pre-chemo blood test and if its too low you will need to be given platelets through your line It is normally given on the ward with dex on the day of treatment and the day after . I was recently changed to Zometa after having Prmidronate for over 3 years , its been found to work well with velcad and other chemos in reducing myeloma levels Fatigue may be a problem so try and rest when you can Constipation can be avoided by taking laxatives beginning the day before your treatment if necessary Good luck when do you start? love Bridget x sorry for butting in to your post to Gaye just thought another experience might be useful

[KeithH17Participant]

Hi Bridget,I don't mind at all the more replies the better.
I start my treatment 14/01/11 at 13.30.
Constipation was the main problem I had with VAD but sennacot sorted it and I'm well stocked up and prepared this time.

I'll keep you informed on my progress and thank's again.

Keith.

[GillParticipant]

Good luck with the pomalidomide Gaye. It is so nice to hear that hthere are new drugs coming on line

Gill

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