[PerkymiteParticipant]

Sorry I cannot help. I am sure I have heard mention of Myeloma XI trial before so perhaps someone might have some infor on it.

Kindest regards
David

[PerkymiteParticipant]

I believe the sweats are a side effect of the CDT treatment. I also had them when on CDT and just after CDT. One minute I would be sweating next freezing cold, my poor old wife suffered from me throwing off the duvet or alternatively had this Ice block trying to cuddle up! I think the cold spells were worse. At the time I ended up wearing long johns under my pyjamas with socks to go to bed to keep warm. Funny, I had forgotten about that episode, seems ages ago now. The good news is that basically that has now gone, although I still get very cold hands for some reason.

Kindest regards
David

[PerkymiteParticipant]

I find the best way to find a post is to click on the users name e.g., Gaye, KWilson, or my own if I am looking for one of my posts, there it lists all the posts that that person has done, 10 per page.

This site I think is at a half way (?) stage it is not as good as some forums I have been on but it is clearly moving there. A better search engine would solve a lot of lost post problems and it does need a spell checker but overall I prefer it. Most of all I love the ability to edit my posts! It is like all change just takes some getting used to sometimes, especially as the majority of us using it are the ?old fogies? (over 50s). I think we have all done well in transferring and moving on. Onwards and Upwards as Tom says.

Kindest regards
David

[PerkymiteParticipant]

Hey Kevin, welcome back I was beginning to think you had left us, but I suppose the good times had to end >:-)

Kindest Regards

David

[PerkymiteParticipant]

Hi Christopher, I give my blood sample at my surgery about four days before my hospital appointment. As others have said it does mean that you have all the data to discus at your appointment, which I very much prefer.

Kindest regards
David

[PerkymiteParticipant]

Enjoyed your blog. You seem to be the other end of the spectrum with regard to Dex.

I had bags of energy on it but had to give up any thought of sleep the night I took the tablets, normally Fridays.

Cannot say I noticed a weight problem although I note several of the ladies complain of putting it on. At the moment, having just finished my SCT in Dec, I am not on any anti cancer drugs, anti-Viral, anti-biotic, disodium Clodronate and the old blood pressure tablets but no cancer med! I see my consultant on Friday who hopefully will tell me I am cured and I can now go partying again! I should be so lucky.

Kindest regards
David

[PerkymiteParticipant]

Hi Norman, Read my "Musings from ward 9". It is on page three of the Treatments section. It wil give you a good idea of the basic process and I am sure will answer most if not all you questions.
Best of luck

Kindest regards

David

[PerkymiteParticipant]

Welcome to our merry band Christopher.

8 years is excellent to hear. You are right about the 24 courses and then it is supplied free of charge to the NHS.

I had/have Thalidomide induced PN in my feet, I call it "spongy foot" because that is what it feels like. I say had/have because there is no doubt in my mind that it has eased over time, about 6 to 9 months now since I stopped taking Thalidomide.

I will follow your post with interest. I am diagnosed in 2009, aged 68, and have just passed through my SCT (Dec) and am awaiting results on 25th , yes this Friday:-) .

Kindest regards

[PerkymiteParticipant]

I am getting slightly confused here, can you help me out Gaye! I thought RT, Radiotherapy, was used to kill off tumours and the like, how do they use it in the treatment of a fractured bone?

Sorry if I am being a bit of numpty:-S
Kindest regards

David

[PerkymiteParticipant]

Well done in getting your redundancy.

I was one of those idiots who always said I was never going to stop working! How wrong and stupid I was. I did work until I was 65 and only stopped because the Taxman made it unprofitable to continue! But boy am I pleased he did so I have never been so happy.

My only regret is that this disease is not going to allow me a looooonnng retirement and the Government is not going to have to pay my State Pension for that many years, after 46 years of paying in I feel somehow cheated by that thought!

Got to dash got to make the wife?s sandwiches and get her to work!!!!!!! (she only works 10 hours a week 😀 )

kindest regards

David

[PerkymiteParticipant]

Hi Em and Tanya, Welcome to our little, but very active, group.

I know it is a very worrying time at the present and it is all so new to you but you have come to the right place for help, support and good advice. Take time to have a good look around the site it has lots of correct and up to date information which will take some of the fear out of your day.

Kindest regards

David

[PerkymiteParticipant]

Well done Shirls, just keep going 🙂 .

Gill talking about her dog's KC name of Courageous Cutey reminded me of my late Collies, Guinness, KC name ?Doubtful Russell?.

Guinness came from a long line of show dogs, indeed he had a KC winner for a granddaddy I believe. However, he was wall eyed (one blue and one brown) and very big for a Collie so nobody wanted him, until we came along and saw him alone, unloved and unwanted, in the kennel with all his brothers and sisters gone and he saw a couple of real mugs who were going to give him a real good easy life!

Kindest regards
David

[PerkymiteParticipant]

Hi Kay, I am pleased everything is back to normal that is as normal as it can be of course. Are you back on the Allopurinol?

I am taking a drug called co-Trimoxazole; I take 2 twice a day on Saturday and Sunday. They are an anti-biotic. I was warned they might have some serious side effects but so far alls I have had is a series of small spots over my upper body that can sometimes itch like mad. Why do you always get one spot right in the middle of your back where you cannot reach it!

Kindest regards
David

[PerkymiteParticipant]

Hi Angie,
Welcome to our little group. They try to get the measure of cancer, Paraprotien, down until if it is not detectable it is in a plateau phase i.e. stable at a low figure, below 5 seems to be the norm. They will also seek to ensure that your Mum's other blood measurements are in good shape too such as platelets. This being ok she will then need a Stem Cell Harvest which I note you have not mentioned.

They carry out a Stem Cell Harvest to collect young immature Stem Cells that hopefully will not have been infected by the cancer, from your Mum. They use the same machine for Dialysis, I think, the procedure is similar. They then pump these same stem cells back in during the Stem Cell Transplant.

The CDT affects everybody differently but some common ground is DEX. This will probably give your mother mood swings, in some people they can go from being very aggressive to very weepy. If your mum suddenly goes from being a ?nice old lady? to a ?veritable monster? just remember, it is not her it is the Dex doing it. We call it ?dexattitude? .

Keep in touch they are a great bunch on here.
Kindest regards
David

[PerkymiteParticipant]

Hi Keith, I generally type my "missives" in Microsoft Office Word then copy and paste. This site does not have a spell checker and I cannot live without one!
Kindest regards
David

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