[GayeParticipant]

I had my full spinal MRI last Thursday and today I was told that T6 had fractured hence all the pain. Hopefully we should start the planning very soon and then the RT. I feel relieved – pain is so wearing. Thank you for all your good wishes.
Love, Gaye xx

[brochoParticipant]

Dear Gaye OUCH!!no wonder you have been in agony I hope they get you sorted very quickly . lots of love Bridget x

[zasrsParticipant]

Hi Gaye
It must a relief to know what is causing the pain, hopefully the rt will help and you dont have to wait long.

All the best sarah

[MinParticipant]

Dear Gaye
Now you know why you had all the pain. Im surprised that you did not have raised calcium levels prior to the scan.
Im sure they will get to grips with it soon and hopefully you have the correct pain killers to make you comfortable without being comatose!
Its interesting from the point of view that you must be on Zometa or some similar type of bone protection. Peter got an additional crush fracture at the end of last year, in my ignorance I thought biphosphonates were given to prevent further bone problems. Whilst I feel for you and the pain you must be suffering it is kind of comforting to know that he is not the only one on bone protection who has managed to succeed in getting another crush fracture. I thought he was a freak; Tiresome as it is, do you have any kidney damage?
Peter has just blown up…. metaphorically speaking! His lower half is totally water logged and its very worrying, he is just one week into Revlamid and hoped it would be as smooth as CDT. I was chatting to the nurse during Peters last consultation and failed to hear if he should be still taking the Acilavor that was prescribed for 6 months when he started the Velcade. That being a chemo and Revlamid not being chemo. Any one got any advise here?
Don't want it to go pear shape like velcade.
Min

[brochoParticipant]

Hi Min poor Peter he must be feeling wretched I hope they can sort it out for him. I have been told to carry on taking Aciclovir and Lanzoparole whilst I am on Revlimid, from the way the conversation went I got the impression that is standard practice love Bridget x

[MinParticipant]

Thanks Bridget, he is taking his lansaprazole for no other reason than he has been getting dreadful heartburn and indigestion since starting the Revlamid, he should not need it as he came off the aspirin when he went onto daily heparin injections. But I will get him back on the Aciclavir. He also has started an itchy head, anyone know if itching is another side effect ? On the plus side in the time I took to do some surfing his water tablets frusimide have been doing there thing and he is a little slimmer, probably be up all night going to the loo as he left it rather late to take them.OOps. I hate this darned disease and the problems it causes.
Luv min

[GeorginaParticipant]

Hi Gaye

Sorry to hear about the fracture but glad you know what's causing all that horrible pain.

Good luck with the treatment and hope you feel better soon.

Take care
Georgina

[GayeParticipant]

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

[MinParticipant]

Gaye
There you go blazing the trail for the rest to follow. Peter was meant to have a second balloon kyphoplasty in Dec and two days before it had to be cancelled, because of his darned newly acquired thrombosis. He was absolutely gutted as the relief from the first op where two were done was brilliant for him. His D dymmer numbers are getting better so he may still get it.
Its his legs ankles and feet that swell up with the kidney damage so he finds it painful to move about when the skin is pulled tight. (Imagine yourself with swollen fingers and how uncomfortable it is.
Have got him back on the Aciclovir …. don't know why he stopped it really, But there is so much information to take in when on new medication and the normal chemo treatment book that usually outlines all of the current treatment was forgotten about this time.
He likes to see things in black and white as a reminder, I like to see it to reinforce my nagging of him.
luv Min

[BADGERParticipant]

Hello min
sorry peter is having such a hard time at the moment the swelling must be awful.Due to my kidney damage they had to reduce the dosage of aciclover as it was not good for the kidneys it help reduce my ankle swelling although when I stopped taking it I got shingles which was terrible so it's worth taking it.
I hope your sciatica is also getting better >:-)
Love from Jo

[MinParticipant]

Hi Jo,
He was on a low dose of aciclivor following the breathlessness which turned out to be DVT so he takes half a tablet three times a day. Most days now his ankles and feet are swollen, cannot work out the cause, some days its worse than others but he does have water tablets to deal with it.
The sciatica is much better thanks, not gone totally but under control now, so back to work on Monday ugh.
luv Min

[BADGERParticipant]

Hello Min

Glad to hear you are a bit better as for work it sounds as if it will not be for much longer good luck

Love Jo x 😀

[GayeParticipant]

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

[brochoParticipant]

Dear Gaye I am so glad you have got a date now , at least they can start to relieve your pain and hopefully it wont be too complicated. For most of the time now I dont have that awful pain , it does come back for a few hours at a time but its not constant and I can deal with it Havent seen any daffs yet but its definitely milder and brighter , at least spring will help to cheer us all up . I hope you can have a good weekend lots of love Bridget x

[GayeParticipant]

Dear Min

I have just be rerunning this thread again and a couple of things you asked I wondered if I could help you with. I think you will find that itching can be a side effect of Revlimid. I certainly experienced it but not massively so as I have heard of others. Also, Revlimid is regarded as a form of chemotherapy as is Velcade. They are just delivered in a different way – one infusion (velcade) one by tablet (Revlimid).

When I look back at some of your postings you have a glorious way of dealing with Peter. Reinforcement of your nagging – wonderful. Whatever though you are dealing with it together even though the dogs have the last word. I find that very touching.

Well done Min. Love, Gaye x

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