[DebsParticipant]

Hi Tina,

Really sorry to hear that Patrick is out of remission, especially after a rotten christmas. I hope that they manage to get him sorted over the next few weeks and months and that he isn't suffering too much with it all….and that you aren't either.

Thinking of you
x

[GayeParticipant]

Hello Sue – thank you for your good wishes. I hope to start treatment tomorrow and I think Patrick will do so in a few weeks. Pomalidomide is the latest of the 'lidomide' drugs starting with thalidomide, lenalidomide (revlimid) and now pomalidomide. I do not know too much about it but I think it is orally taken along with dex like the other drugs.

It's all unknown territory but I would like to thank you all for your good wishes and support. It means so much to me.

Love, Gaye xx

[MinParticipant]

Dear Gaye
You are an inspiration to all of us, and I do hope the new drug, works for you. Why do they have to give them such long names?
Let us know what Poma…die! is tablet or infusion?
I am curious to know, what drugs if any that you have been through have not worked on you? and what happened next so to speak. Do you have bone damage? or any other problems that exacerbate the MM?
You would appear to have an amazing team looking after you; helped no doubt by your indomitable spirit.
Keep well and keep on keeping us right as you are one of those with the T shirt (been there done that)
Where you go we or our loved ones will follow.
Best Wishes
Min
PS sorry for hi jacking your thread with a fellow northerner.

[PhilKellyParticipant]

Hi Keith and Gaye, been away for a while so interested to see how you are both doing. Good news on getting the drug Gaye, good luck with it! Keith…. Sorry to hear about the relapse….. My relapse hit in October last year and I am mid 2nd cycle of Velcade….. Way nicer than CVAD! But starting to feel a bit drained…. Let me know if you want to compare notes? Cheers, Phil

[KeithH17Participant]

Hi Phil and yes we should compare notes as the treatment is the same.
I'd been having terrible pain in my Ribs and back for 2 weeks so went in to have it checked out.
Proteins had risen to 7 from being at zero for 2yrs.
I had a skeletal survey which did show slight changes to the Rib area and a new lesion on my skull.
I then had a Bone Marrow Biopsy and also a piece of the actual Bone it'self was taken.
This showed that the MM was active and the whole Chemo thing was once again looming on the horizon.
I started my first of 8 cycles of Velcade last friday and had my second injection today with 2 more to go Fri then Mon next week to complete the first cycle.
I also started on Zometa today which will be once a month instead of good old Bonefos every morning.
I'm back with my old friend Dex complete with rosy glow and all and the appitite of a ravishing lion.
Early days but apart from the fatigue which comes in waves not too bad.
If all goes well the it will be a second SCT with the cells they have kindly kept in cold storage for me in anticipation.
I've had 2.8yrs so can't really complain.
I was wondering how you were doing and sorry that you are in the same boat but it will take more than MM to beat us.

Keep in touch mate and look after yourself…Keith.

[GayeParticipant]

Dear Min & Phil

Firstly Phil – I am so sorry that you have relapsed. You seemed to be doing so well and now it has reared its ugly head again. I imagine they are preparing you for a second SCT using velcade. Good luck Phil and please keep us informed. Now it's you and Keith.

Min – yes I feel I do have the T shirt having gone through the whole range of treatments. I went to clinic today at Barts and now have my first treatment of pomalidomide which I start tomorrow. It's exactly the same method of treatment as Revlimid. A month's cycle of 21 days taking the drug and a week off before the next cycle. All the other drugs are the same except dex is given at 40mg per week, allopurinol, aciclovir, septrin and lanzoprazol. I will also go to clinic once a month, the same as with Revlimid, but all other blood tests and infusions are done at my local hospital to save me the journey up to London.

The only drug that didn't really make any impact was thalidomide but both treatments of velcade and both of revlimid worked although the side effects in the end forced me to come off them which seems to be the case for some people. Yes I have considerable bone damage which was dealt with by the two balloon kyphoplasty ops that I had two years ago. In the last few weeks whilst being off treatment the pain has returned and is agony right now. It is the pain more than anything that wears me down. I can deal with most things but chronic back pain just does my head in.

Yes you are right I have a wonderful team and can't thank them enough.

I hope that is of some help to you Min – please let me know if I can give you any more information.

Love, Gaye xx

PS Don't worry about interrupting A Makem and an Essex Girl! I'm just fascinated by the inter-rivalry that goes on 'up north'. By the way my Dad was born in Stockton but I will remain neutral with you and Keith!

[PhilKellyParticipant]

Hey Keith, they aint gonna get us yet! Feeling rough today so will respond properly
Soon

[zasrsParticipant]

Good Luck Gaye, Phil,Kieth and Min with all the new treatments, Gordon is recovering from his 2nd sct and vows never again, so i am finding it very helpful to read of the trail blazing treatments, though gordon had revlamid which kept the mm dormant for 2 years with no side effects except for the dreaded dex!!

Best wishes

sarah:-D

[mhnevillParticipant]

To all you "oldstagers" and trail blazers, (albeit for these titles you pay a very heavy price!)

I just wanted to say how much I appreciate your courage and also your willingness to share your experiences with those of us who now follow you on this horrible journey.

Your willingness to test new drugs and regimes means so much. I hope and pray that you all benefit from the treatments you are currently undertaking.

Love

Mavis

[brochoParticipant]

Dear Gaye good luck for tomorrow , I hope you dont have to wait a long time for your meds , its so frustrating the first day of any new treatment!! Have you got a date for your mri yet? I had my first appointment at radiotherapy today and was suitably marked for life !!So now I can be known as the ciggy-smoking ,whale with a tattoo from Luton Phew soon there will be no room on the page for my aliases!! love Bridget x ps I certainly will never have a real tattoo it blooming hurts !!

[GayeParticipant]

First day of pomalidomide didn't exactly go off with a bang. There I was having breakfast with a pile of pills and the 20 dex staring at me. Everything was fine until I tried the dex and began a heaving fit. Battling to keep the b*****s down only succeeded in making it worse and a quick dash to the bathroom realised my worst fears. As they went streaming down the plug hole like Niagara Falls, thankfully I still had the pomalidomide – the only drug to survive. So, doctor's orders, take another dose tomorrow to make up for it.

As some of you know I sometimes attend our local hospice day care unit and they are trying to build a new hospice to provide more beds as they had to turn away 50 patients last year because they cannot extend the existing premises. Today I was shown some of the letters from the local NIMBYs opposing the new hospice because it is being built on green belt owned by the Salvation Army. I have never read such such horrible and vitriolic letters and I am about to write my two penn'orth as to why the hospice should be built. The proposed building will be overlooking the Thames Estuary but has been designed to fit in to the lower hills so that [b]nobody [/b]can overlook it, It will enhance not damage the environment in every way and no other buildings will be allowed permission to build. It has received compassionate ground status.

We live in a democracy and people have their right to speak but I didn't realise just how vicious some people can be towards a hospice. Let's hope they don't have reason to ever need it.

Love, Gaye xx

[brochoParticipant]

Dear Gaye not a good start to your day , those blooming dex cause mayhem whenever they can !!I was so shocked to read that people could write nasty letters about a hospice!! They must live such selfish lives only thinking about their property As you said I hope they never have need of such a service I am sure your response will make at least some of them think about their priorities!! On another subject have you ever tried those heatpads for your back pain ? I used them before I was diagnosed a few years ago and they did help a bit love Bridget x

[tomParticipant]

Hi Gaye

Sorry to hear bout your problem keeping the Dex Down:-( do you think it could be Mind over dex? that made them come back :-S

And the Buggers that are trying to stop the Hospice being built >:-( out to be ashamed of themselves, I have just been to a Fundraiser to help with the running costs of Lindsey Lodge Hospital http://www.lindseylodgehospice.org.uk/ and if you look at the link everyone will know that its just not concrete buildings that are being put up its done in a sensitive wayto the blend in with the local area 😎

Good Luck to you all on treatment

Tom xx

[GayeParticipant]

Dear Bridget & Tom

Thanks for your lovely replies. Bridget, I have started using a hot water bottle for my back. I know it doesn't treat the bones but it does make it more comfortablr for a while. I hope your RT is going well.

Tom, I have looked at your local hospice and am so glad you are supporting it in such a practical way. Fair Havens was created from a large house and medium sized hotel next door to it. It quite simply has run out of space. The plans are like your Lindsey Lodge Hospice – all to be built on one level I have read and re-read these letters and the opposition has such a shallow case. One suggested we should go somewhere else in the town – where the old gasworks were, by a busy road in an old industrial unit and old 60's built office blocks in the middle of town, all now empty, but which would provide "a panoramic view of the estuary" and "wonderful views of countryside". To get the "panoramic view" you would have to stand on top of the buildings and for the countryside he talks of an underground garden which would mean walking over to it! Arghh. They talk of their precious green belt being lost for future generations but not of their own house prices which, any peak out of their windows, would show them that nothing will change but which really is the sum total of their opposition. Oh well, I am gathering my thoughts together for a pompous letter – it's a long time since I have written one!

Love, Gaye xx

[jmsmythParticipant]

Dear Gaye

I have been following you post. I have no knowledge of any of the teaments but you seem to be having a rough time. I hope that tomorows pills stay down and they work.

I don't understand how people can be so nasty about a hospice. A children's hospice was built a few years ago, not far from where I live. (I think it is the only one in N Irleand). It is built on the top of a hill overlooking Belfast Lough, and private houses have sprouted up all round it. I don't think there was ever any objection to it. It is a lovely place. As you say Gaye, I hope they never have to use one.

My very best to you. I will be thinking of you and hope all goes well.

Love Jean xx

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