[PerkymiteParticipant]

Welcome to the site Terry, reading your post I feel a bit of a fraud!!

But then I look at the xray of the titanium in my neck holding up my head he he. Even Doctors are amazed that I have got so much movement back. I was diagnosed in Jul 09 and broke my neck getting out of bed. I had a massive tumour which ate the 4th vertebrae for breakfast.

I am 10 months post SCT and apart from a heart tablet and Loron (bone strengthening tablets) I am on no cancer medication. Paraprotien at present 2.1 and feeling good MM wise. So, I have not at present been put on any of the other drugs that are talked about so sorry cannot help personally.

Kindest regards ? Vasbyte

David

[PerkymiteParticipant]

Hi Ted, Happy to help.

SCT is Stem Cell Transfer. Basically, and there are variations on treatment, they give you Chemotherapy to try to get the paraprotien cells as low as possible. They then take Stem Cells from your bone marrow in a Auto SCT, or from a donor in an Allo SCT. Having got the Stem Cells you then go into hospital and have a seriously nasty drug called Melphalan (not sure of the spelling of this) I understand that Melphalan is similar to Mustard Gas! This kills all fast moving cells in your body, such as hair, throat and stomach cells, your immune system cells etc.. Hence the reason you see most cancer patients hairless during treatment, it does however also kill most Myeloma Cells. They then reintroduce your Stem Cells back into your body to rebuild all the damage cells. The reason I have put in ?kill most myeloma cells? is that some MM cells lie dormant and therefore the melphalan will not touch them (fast moving cells only). And, at some time in the future they will awake and start all over again, hence Myeloma being a treatable decease and not a curable one.

Vasbyte is a Africans word that my South African family used in a communication to me. A direct translation means Bite Hard. But it is meant in the sense of the English grit your teeth,dig deep and bl88dy well fight!

Hope this help, I am sure if I have not got the SCT operation right some body will put me right.

Kindest Regards ? Vasbyte
David

[PerkymiteParticipant]

Sorry to hear the bad news Gill but I am with Dai on this, what he says does makes a lot of sense.

I have been living with the Sword of Damocles, like us all I suppose, and I have now passed my first ?Sale by Date? (July 1010). I feel good and have just been given 3 months clearance before my next appointment. So do not give up just ?Damm the Torpedoes? and keep bl88dy well going.

Kindest regards ? vasbyte

David

[PerkymiteParticipant]

Great news Jet, you do whatever keeps you strong.

Kindest regards – Vasbyte

David

[PerkymiteParticipant]

I think it is a good idea and I am sure the Myeloma Team will take your request onboard.

Glad you are back with us Min.

Enjoy your holiday

Kindest regards – Vasbyte

David

[PerkymiteParticipant]

Hi Carol, You are right about "grit your Teeth". My South African family told me of an Africans word, Vasbyte, I use it all the time now to remind myself if any doubts start to creep in that I am not going to live forever 😀 😀 . It means Bite Hard in the sense of english grit your teeth and get going.

Kindest regards – Vasbyte

David

[PerkymiteParticipant]

Welcome Linda it is nice to hear from you. Your Mum muat be real proud of her very active family. Keep up the good work and regards to your mother.

Kindest regards

David

[PerkymiteParticipant]

Hallo Peter and welcome. It is really nice to hear from people like yourself, it gives us all so much hope and helps to cement our postive vibes in place:-D

kindest regards – vasbyte

David

[PerkymiteParticipant]

Well done Jo and congratulations.

Mo and I have been married 49 years on the 22 Nov 2011, actually we renewed our wedding vows on our 35th wedding anniversary so we have also been married 14 years he he.

When we met Mo was 16 and I was still 18. I was a very young soldier and she had dire warnings from everybody that you cannot trust a soldier etc.etc.. Mo took them very seriously and if I say my first child was born 12 months AFTER we got married you might get the picture;-) As it turned out we are the only couple in both of our families to remain married, everybody else is on second wives or divorced. Just goes to show.

Kindest regards ? vasbyte

David

[PerkymiteParticipant]

Great news Liz and well done to Kev. Enjoy your travels, Mo and I have spent the year on various travels from Scotland to Trier. We have had a great 9 months.

I go for my appointment this Friday and I feel as fit as a fiddle so I am not really prepared for any bad news :-/ because I EXPECT it to be good and that is that.

Kindest regards-Vasbyte

David

[PerkymiteParticipant]

Just got back on the forum and read this post.

I had my SCT Dec 2010. I get small acne type bumps which are mildly itchy. However, I get only one or two, normally on my forehead and neck and they seem to go as fast as they come so I would not describe it as a rash.

Kindest regards ? vasbyte

David

[PerkymiteParticipant]

A warm welcome to you both we all will look forward to your taking part in our little group.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Hy Gilll, fastly abot the speling. I am, and always have been, a terrible speller this is compounded by being a lousy typist as well! I was so pleased when Word Processors came along with a Spell Checker. What I do is type my missive in Microsoft Word and then ?copy and paste?, which is exactly what I am doing now.

Interested about the Flu Jab, last year I did not have it and although I asked my Doctor and Consultants nobody seemed to be able to give a definite YES or NO. I am not sure whether the fact that I was going for a SCT in Nov/Dec was in anyway related. But it is top of my list of questions for my appointment on the 29th.

Lastly can I wish Stephen the very best of luck with his treatment.

Kindest regards ? vasbyte

David

[PerkymiteParticipant]

Hi Aileen welcome (?) to our merry band.

You have selected the right site it has bags of information, which is up to date. You will find I think a good bunch of people here from Carers to sufferers and no matter what you are about to go through most likely somebody on here will have done it, bought the tee shirt and thrown it away.

We look forward to you joining in.

Kindest regards ? vasbyte

David

[PerkymiteParticipant]

Hi Ivan, just so you can compare my Paraprotien were 33 when a Tumour in my neck ate my 4th Vertebrae. After Radio/operation/Chemo and an SCT I am now at 2.3 and have been there since November 2010. This is for information only and as Helen says it can be different in each person so do not take my readings, for example, as a bench mark for your own readings.

Well done with the reduction keep it up.

Kindest regards ? Vasbyte

David

[Author]

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