[PerkymiteParticipant]

I have very mild PN no pain just a bit of "sponge feet" as I call it. But I will bear that in mind, when and if I go onto the next stage's treatment 😀 .

Thanks

kindest regards – vasbyte

David

[PerkymiteParticipant]

Hi Caz, Support you will get in the bucket load from this bunch of real nice people. You have no doubt explored the site and found lots of good UP TO DATE information, be wary of the information on the WWB.

I was diagnosed July 2009, I broke my neck getting out of bed. They found a whopping great tumour had eaten my 4th vertebrae, my head is held up with titanium rods, a bit like scaffolding around a steeple but internally. Radiotherapy dealt with the tumour. My Consultant informed me that she had looked at my medical history and that I had had Myeloma for two years, it had just not been picked up!! I had my SCT in Dec 09 and I have been going strong ever since. Paraprotien 2.1 at last count (Sep 11).

I wish you the best of luck.

Kindest regards ? Vasbyte

David

[PerkymiteParticipant]

I have had the Pneumonia jab in the past but got the impresion that it is not something you have every year. My Flu jab is on the 5th Nov, I will ask about it now you mention it.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Yes, I get the page not found. You can access the forum from the home page, just scroll down and there is a box headed Discussion forum.

Kindest regards ? vasbyte

David

[PerkymiteParticipant]

Are you or your wife ex forces by any chance. You can get a lot of help via SSAFA and the RBL.

If you need more information let me know.

Kindest reagards – vasbyte

David

[PerkymiteParticipant]

A really interesting post, thanks, I expect the path that lies ahead for me although I am not sure what treatment is available at our Cancer Centre yet.

Injections; I do not know how relevant it is but the nurse told me to try to keep a clean entry and exit of the needle when doing my anti DVT injections i.e push it in, inject and then pull it out cleanly without waving it around and do not rub the puncture site afterwards.
Gently apply a small plaster and leave it for at least 4 hours. I never had any bruising or marks.

The very best of luck to all of you.

Kindest regards ? vasbyte

David

[PerkymiteParticipant]

At 68 I am long past Menopause male or otherwise and anyway I had the snip in 1972!

I had my SCT in Dec 09 and for a small period, say a month (?) after this I did get night sweats but they have long since past. The only time I sweat now is after one of my morning walks when I come back drenched:-D >:-) . Then I get into my lovely shower and it is pure heaven.

Kindest regards ? vasbyte

David

[PerkymiteParticipant]

Actually, Dai, I got it from South Africa and changed the Rand to Pounds; it is a small old world nowadays.

Kindest regards ? Vasbyte

David

[PerkymiteParticipant]

What an excellent post Dai, well done to all who have entered the debate.

I "believe? as a layman I am getting excellent treatment, but, I often wonder if I would have the same "belief" if I was a Doctor, specializing in cancers of the blood, suffering from Myeloma! I doubt I will really ever answer that.

We have a purpose built cancer unit, 500 yard from my front door. It does not have all the magic kit it would like, that I am sure and the Stem Cell Extraction machines were closed down because I am told they just did not get enough STC harvest to keep staff fully trained to use it. I know when they put my stem cells back in nurses were keen to be part of it to ensure they could tick the training box. The cancer centre is based on the old Private part of the hospital so consequently it has 9 self contained en suite rooms available plus another two open wards newly built in the last 2 years, plus Day Centre etc… It is like staying in a first class hotel.

The one thing I do not like is that I always see a different Consultant. They have normally scanned your notes and quickly read your latest blood results before seeing you. I appreciate there are all sorts of reasons for this but if I could change one thing that is what I would ask for. And, without wishing to depreciate in any way the work and skills of the Consultants, they are Consultants in Haematology or Oncology they are not experts in Myeloma and have to bone up (I thought that was appropriate phrase ? bone up) on it! My own Doctor openly states he knows nothing about the decease end of story, and we are good friends!!!

Kindest regards ? vasbyte

David

[PerkymiteParticipant]

Hey come you two, I was enjoying the dialoge do not get upity now LOL 😀

Kindest reagrds – vasbyte

David

[PerkymiteParticipant]

Stick with it Mari, I will have to face your situation sometime in the future and whilst I can understand your concern there are other courses of treatment that will in fact ?give you more time?.

Keep us informed please we will always be here for you and Steve.

Kindest regards ? Vasbyte

David

[PerkymiteParticipant]

Dai I am so so please for you. Have a LONNNNNNNNNNNNNNNNNNNNG remision but most of all enjoy your pill free time.

Kindest regards – Vasabyte

David

[PerkymiteParticipant]

You just keep going Shirl as we all know you will.

Kindest regards – vasbyte (big time)

David

[PerkymiteParticipant]

Thanks everybody.

There is some resonance in what you say Dai in that I only had the neck tumour. When they did my skeletal survey they could not find any other bone lesions.

I will have to ask at my next consultation ? drat I am going to have to wait 3 months now! 😀 😀

Had to stop my daily walk I have picked up the chest infection that has been doing the rounds in Taunton, temperature went up slightly last night but down again now, the old soluble paracetamol works wonders.

Kindest regards ? vasbyte

David

Edit
'osteochronosis of the jaw' is a danger with all of these treatments I understand. When I first started Loron there was a big huha about the lenght of time you could be on it, 2 years was quoted. That does not seem to be a concern nowadays.

Hi Tina
Well we mere humans will never really know about what we are NOT prescribed because it is too expensive i suspect. But I am happpy to be on Loron, Zometa seem a lot more fuss, that is as long as it is working :-S

[PerkymiteParticipant]

Hi Etta, Welcome (?) to our little band, I say little it seems to be expanding this year. I was diagnosed in Jul 2009 and to this date I do not know what stage I am at. As Bridget says some Doctors think modern medicines have made it outdated.

I look forward to sharing your journey.

Kindest reagrds – vasbyte

David

[Author]

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