[PerkymiteParticipant]

Hi guys, As you are aware from my previous posts I am just hopeless in this sort of situation, just can’t get the words right on paper for some reason.

Can I just second what you have said and just add that I held him in such high regard that I still find it hard to come to terms with the fact that he has gone.

kindest Regards – vasbyte

David

[PerkymiteParticipant]

Hi Megan, I did ask how many cycles I would be having and the reply was “until you have reached a plateau and can go no further then we will consider maintenance”.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

I am shocked by the sudden news of Dai. We have been together for 4 long years and he was a great support not just for me but for everybody. IMy sincere condolences to all his family.

The site will not be the same without him.

kindest regards

David

[PerkymiteParticipant]

I am sorry to hear the problems your Dad has been experiencing with his mouth.

I like Tom have been on some form of Bisphosphonates since diagnosis in Jul 09. I was told about the problems with Osteonecrosis and had to have a Dental Inspection and any repairs done before I started. But, thank you for the warning that others will no doubt benefit from.

I hope he gets well soon.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Hi all, I never realized that "maintenance" meant taking two or more drugs, I assume permanently. When I went on to Revidimid, 6 weeks ago now, I was told that if it worked I could continue to take it as maintenance (I am 70 so no age thing here). I just assumed it was a lower dose of Rev just to keep the MM down. I get no side affects from Revilimid but I am not happy with Dex!!!! I currently take Rev + Dex. Now I can understand the constant "should I take it as maintenance" questions. 😀

If my next meeting on the 29th goes well I will have to ask about it!

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Hi Tina, I thought that all biphosphenates could give what I think is Osteocronisis of the Jaw.

Kindest regards – vasbyte

David

(spelling is a guess 😀 )

[PerkymiteParticipant]

Hi Mandy, Are you on biphosphenates?

Biphosphenates keep the majority of my pain at bay without any additional pain killers. I have several lesions in my spine, about chest height just behind my heart, and when I lay down at night I do get "uncomfortable" I take 5 mil doses of Oramorth during the night, when I get up for a pee, but I cannot say it keep me awake.

kindest regards – vasbyte

David

[PerkymiteParticipant]

Best of luck with the SCT Dick. It is great you have got this far you have really been through the mill.

The main problem with SCT is, apart from your neuts not returning!, is an infection and I was happy to stay in isolation as long as they wanted. Once out of isolation I wanted to go home quickly because I knew I had less chance of catching an infection at home than in hospital.

Chin up and keep going.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

That is really tough on you Maureen. Mo and I have always counted our blessing with the Hospital 500 yards away. I hope it all goes well for Ian.

just keep going

kindest regards – vasbyte

David

[PerkymiteParticipant]

No, but I do plan to be buried in my own coffin which I have nearly completed. 😀 😎

my kindest regards – Vasbyt

David

[PerkymiteParticipant]

Hi Mavis, You might remember me talking about going to France with my son and his family. Well, whilst driving back I suddenly went crossed eyed, the lines on the road on the left and right crossed and I just did not know my position on the road. My Son drove the rest of the way.

When I got back to UK I went to an Optician and he said I had weak eye muscles and this could develop in the over 65s. I now have special glasses that have prisms in the lenses to pull my eyes right.

I mentioned this at my next appointment and I was quickly sent for a MRI scan on my head. There is Myeloma around my eyes but it is not too bad, but they then discovered the Tumour developing at the base of my scull. Now zapped. The consultants seem quite intrigued by my eyes and at my next appointment I had a detailed examination of my head and the muscles in my face.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Lets put it this way Dick, I did all that I asked them to do PLUS they carried 40 lb of weight I carried 60 lb. I always offered to swap packs with any shirker 😀

When the Col called out for me to take the training 160 fit young airborne soldiers groaned. :'-(

Happy days.

kindest regards – vasbyte

David

[PerkymiteParticipant]

Sorry Maureen I cannot. I have never had one. When they repaired my neck they put in four titanium posts and a plate, wonderful job. I am sure several people on the site have had a khasoplasty, perhaps they can help. I think the best is to 'phone our MyelomaUK nurse.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Your comment brought some memories back Dick. I was a Regimental PTI and once when taking training I said to this guy, "Come on keep up, what is a bit of pain between friends?" quick as a flash he replied, "Yea, but I ******* hate you!". I smiled through the rest of the session. 😀 😀 . And, yes, he kept up. 😉

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Hi Dave, I am intrigued by your question. I have not been on the site for a while, going through a "blue" patch, so I have not read all your back posts. However, is there really a question about taking Revlimid as a maintenance?

I assume that Rev has worked for you and either lowered/controlled or maybe even eradicated myeloma – not sure which one – but if it has done any of the above surely it is a no brainer, or am I missing something?

Glad you are doing so well.

Kindest regards – vasbyte

[Author]

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