See what you started Phil! By the way when you had your last Bone Marrow Biopsy can we asume it was WITH anaesthetic or was it a re-run of the Benny Hill opening shots! Come on, own up!
Love, Gaye xx
Dear Jenny – I am so very sorry to hear about your dear Dad and all the awful feelings and emotions it has stirred up in you all. I understand his decision totally and he has every right to make it. But what now? As a great supporter of hospice care, if the palliative care team can get him into one and he wants to go, he will receive wonderful love and care, and you will all receive that same support. Or Hospice at Home/Marie Curie may be in your area. I do hope that your meeting brings you a care plan which will help you all.
It sounds such a difficult time for you and I send you all my good wishes and love to help you through.
Love, Gaye x
Thanks for all your replies and support. I am happy to report that my beloved dex sailed down the throat today and happy to start its tricks. May God bless them and all those who sail in them ….!
No need for the dex sarnies today Min but a cracking idea for the next potential up-chuck!
Pompous letter is taking shape in my mind re hospice – now it is getting the words together to send.
Love, Gaye xx
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
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
Oh no. I can feel a resurrection of the greenhouse, wine making and cucumbers only this time with a band in it ………!
Gaye x
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!
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
Well done Shirley and I am so glad you are safely back home. I wish you a good and hopefully speedy recovery. Your sister is great but then you already knew that!
Take care, Gaye xx
Dear Bridget – really glad you are getting your RT next week. Brilliant and I hope that pain soon responds to the therapy. You are right about pain being so draining. I actually felt the tears welling up today as I couldn't find a comfortable place and then I got an MRI appointment for 27 January at my local hospital. If they get a cancellation they will contact me because they know about the pain.
Anyway good luck for next week and will be rooting for you to find relief as soon as possible. If you have any left over perhaps you could send it to me! I so hope that Revlimid will be good for you. I tolerated it on both occasions pretty well so I wish the same for you.
Love, Gaye x
Dai- what can I say to those lovely words – simply thank you.
Love, Gaye x
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
Hi Michelle – sounds like your Mum is doing well with Revlimid so let's hope she continues for a long time with it. I was interested that Mum has been recommended an iv bone strengthener. I am going for my first one today but it is called pamidronate or something similar! Let's hope it reduces the pain for both of us! I really wish her well. I love the way you care for your Mum and I am sure she does too. To use that phrase – onwards and upwards. I think Myeloma UK should be changed to Onwards and Upwards UK with Tom as our Chief Onwards and Upper. Food for thought Tom!
Love, Gaye xx
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
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
