Hello Clara – I don't know very much about about Amyloidosis but I believe that there is a connection with Myeloma because this site embraces it with other inforrmation. Maybe a call to Ellen at MUK to get some further information would help. I also know that the main hopital specialising in this disease is the Royal Free in London. Have you been there?
It sounds like you have a lot going on at the moment so it would be helpful to get it fully diagnosed and then know the treatment for it. Try to take it all in slowly but surely as there really is so much to learn about in the early days, it really can be very muddling. Keep asking the questions you need to understand his situation.
Good Luck.
Gaye xx
I have finally got my date for RT simulation for next Wednesday at my local hospital. However, they now think that the T6 fracture is an old injury so it is no longer quite so straight forward. Anyway hopefully we shall find out soon.
Hope you all have a good weekend. I can finally see daffs and snowdrops coming out. Is spring finally on its way?
Love
Gaye x
Dear Bridget – in answer to your question, totally fed up waiting to hear when I get the nod to start RT treatment. This is the problem with multi-hospital involvement and I hate it. Shall be on the phone tomorrow to get some answers.
My favoure Wallander has been with Krister Henrikksen. Kenneth Branagh's version just left me losing the will to live. I shall look into the Danish one this weekend so thanks for reminding me.
How is your pain now Bridget – I hope you are now feeling some relief.
Take care and much love. Gaye x
Love it David – thanks for a good laugh! Love, Gaye x
Thanks Min – I glanced at that one but gave it the cold shoulder. Tuesday night was just not the same – Holby having to settle in with new characters, Malik we learn is gay and Nurse Petrenko becomes an F1 doctor overnight and in the same ward. My favourite now is Sasha. I could fall in love with him! I am going through withdrawal symptoms with Silent Witness. Sad but true.
Good one I picked up on Channel 4 is The Promise on Thursday I think but for all round dopiness and characters it has to be Come Flyn With Me. I know I have completely lost it.
Love to you all.Gaye xx
Dear Tina – yes we both sound in similar situations. I've just remembered that Patrick's consultant does not give him GCSFs hence his frequent hospital stays, so forget about stocking up on the injections!
I am wishing you both well and will keep you posted after my first check up at Barts on Monday.
Take care,
Love, Gaye x
Hello Sylvia – Thank you for your response to this thread and your lovely words. I somehow feel I can empathise with your situation because when I relapsed the first time I was just devastated. I had 18 months of remission first time round and then 1 year the second. Just when you feel your life is back on stream something else bites you on the proverbial bottom.
I think how you dealt with it when first diagnosed was brilliant. Many people seem to mistake melanoma with myeloma which isn't very helpful, but it seems you got full understanding and love from those who really matter to you. Also you seemed in control of how you wanted your diagnosis to be received. Well done Sylvia – the girl done good!
I hope so much that the treatment goes well so please keep us up to date.
Good luck and love, Gaye xx
Dear Tina – thanks for your message and this is how Pomalidomide has been after 21 days. I am now on my free week as from today. I too take 40mg dex per week even in the free week. Because I have low platelet counts it was decided to stay away from any blood thinning tablets such as aspirin/warfarin etc. Pomalidomide also attacks the White Blood Cells and Neutrophils so tell Patrick to keep a very close watch on both counts and stock up with plenty of GCSF injections. I suddenly dropped down to 0.3 and frightened out of my life but thankfully it was resolved.
It's hard to say how I feel after the first cycle. Generally I have felt reasonably well and if it wasn't for the back pain would say that so far it has made me a bit dopey and sleepy and a bit chemobrainish. Dex and I are living together quite well. It will be interesting to hear how Patrick deals with his first month aand how much our responses have in common. I send both you and Patrick much love and thinking of you.
Love, Gaye xx
Dear Min – you can be excused for not joining us as yet another sado with a first class piece of evidence on your own behalf. I agree that watching Holby City does make you a sado and here too, along with Silent Witness, I must confess to being a double sado, so Tuesday is my evening of pure delight. After that it all goes downhill. Yes Holby car park is one killer car park but what I find worrying is how nobody, but nobody, ever serves their notice out when they leave. Amazing, here today, gone tomorrow.
I think I must lay down.
Love, Gaye x
So girls, that was it as our heroic three walk off into the sunset will we ever see the likes of them again? Harry didn't take the job as his pent-up desire for wots-er-face is showing no signs of abating. It seems to be left open for us sados to start the Bring Back Silent Witness Campaign or walk off into the sunset with them and see if Harry finally gets his gal!
Bridget, regain control of the countrol. Do you want us to send the lads in and get it back…………………!
Bereft of Benfleet (aka Gaye xx)
My consultant has suggested I might like to think of another kyphoplasty on my fractured/crushed T6. It would mean more travelling up to the Royal London where they do these ops but its effect would be much quicker than having RT. I shall discuss it with the consultant RT locally to see what he thinks. At least things are moving for which I am very grateful.
Min I agree with Bridget about the use of Aciclovir and Lansoprazol. I have been on that regime for every treatment I have had and Aciclovir is to prevent viruses such as shingles etc. I have just changed to Pamidromate instead of Bonefos. My myeloma does not seem to affect the kidneys and because my counts are low, I do not take aspirin with Pom, so Peter and I differ a bit with our medication. He must feel wretched with such a swollen tummy. Min I couldn't agree with you more about this wretched disease. Is it a time for a chat with your beautiful dogs?
Love
Gaye xx
I share all your concerns about GPs running the NHS budget but as I see it, it's rather like revamping the PCTs to be clinically led rather than by administrators as happens now. They will be consortiums of GPs, not packed full of them, so dissenting GPs do not have to sign up to become one of them, just reluctantly be part of the new system.
I think as a nation and individuals we all hate change feeling that what is to come is going to be worse than before. We also really don't understand what it will involve and that makes us anxious. I am going with the flow on this one and hope for the sake of patients and the nation alike it will continue to improve the health service.
And hereby endeth the first lesson!
Love, Gaye x
Yes Jean I think you are right about it being the last one. Two sad people together! I was so worried when Harry nearly snuffed it last week wondering how the programme could survive – now we know.
Oh dear ………………
Gaye xx
Dear Bridget – HAPPY BIRTHDAY our lovely Bridget! Well done on reaching 56. I am an Aquarian too – maybe that links our soppy senses of humour. You are a very special lady to all of us on here. Lovely humour and so much capacity to offer as much as you can to the rest of us. Thank you so much for that. Have a wonderful day hopefully with your family and then on with the job of doing battle with dex. What dosage will you be on Bridget? Anyway my love to you for a lovely day.
Love, Gaye xx
Dear Tina – As you know I have long followed your shared journey and admire you both for how you have and are dealing with it. I know in the early days that Patrick used to post but it is lovely to have you do it now. You both inspired me to go for the pomalidomide and I am amazed that he still works despite the pain. Yes, he is a gem. What can you do with him? Just carry on as before – you sound a wonderful team.
Regarding the pomalidomide, I am mid-way through the cycle and am beginning to see its impact on my blood counts. They are low anyway but Pommy, like Revlimid, targets the neutraphils so I am having to use the GCSF injections. Like Patrick I visit hospital roughly 3 times a week. Such joy! I will keep you informed on how the next 2 weeks of the cycle go.
Love, Gaye x
