[PerkymiteParticipant]

Thanks – Job done

Kindest regards – Vasbyte

David

[PerkymiteParticipant]

Well done that YOUNG lady 😉 . Sounds like a smashing day was had by all 😎 😀 .

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Hi Angie, Sorry did not see you post for some reason I cannot explain.
Thanks for coming back and visiting us. That is very Kind. Your Mother passing so suddenly after such a good prognosis must have been one hell of a shock I am glad you seem to be moving on and working together as a family unit.

Thanks

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Once again Dawn just a Hi and to wish you the best of luck with your treatment.

There are a few medicine techys on the site so with luck someone might be able to help you.

kindest regards – vasbyte

David

[PerkymiteParticipant]

Hi Sandie pleased to hear your Mum is doing well. Yes, your Mum will have to take some form of bone strengthening medicine I think. There are others I believe and if she cannot get on with Zometa perhaps they will try one of them.

At the present time I am on Parmidronate, I have this by infusion once a month. I was diagnosed in Jul 09 and started on Loron, which is tablets form every night. Loron was a pain for me in that you could not eat anything 2 hours before or 2 hours afterwards. When going out or social events I had to work around my Loron.

Kindest regards – Vasbyte.

David

[PerkymiteParticipant]

Dai, What is the dosage you are using?

I am on 2.5mg of Velcade twice a week making 5mg a week for two weeks then one week off. This is one cycle for me. They are not sure at this stage, just done cycle 3, whether I am going to do 6 or 8 cycles.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Hi Eve, ok you have seen through me "a little bit of dexattitude" was from my perspective, not quite Mo's I think 😀 😀

I get the "got to sleep" between 2 and 4 p.m. as well Helen.

Interesting one on "Care". The Consultant has told me I only need a blood check two days before I see her on the third week of cycle four. The Staff Nurse who treated me today decided that I would have a blood test next Monday, week two of cycle four. She said she had been looking at my blood readings and felt the HB/Platelets could be a problem and it would be best to check them earlier and if I needed a transfusion they could fit me in anytime. I have got to watch my energy levels (which are good at the moment)and report straight to the Day centre any problems. That is the second time, in my treatment, that a Staff Nurse has decided to overrule the Consultant "in the interest of the patient".

Now that is what I call [i][b][u]CARE[/u][/b][/i]. I feel very well looked after by one and all at the Beacon Centre. And, that is why I feel for you and Slim. It should not be a battle, move to Taunton?8-) I was particularly pleased with my Neuts at 3.75.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

That is real bad news Trish. I can only wish all the best and keep my fingers crossed for you both.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Hi George, Myeloma is a blood Cancer and as such you will be under the haematologist. Normally they confirm that you have Myeloma with a Bone marrow biopsy. How long is it normal to wait for a diagnosis is like asking how long is a bit of string I am afraid.

kind regards – vasbyte

David

[PerkymiteParticipant]

Well done Boyo. you are an inspiration, just keep going, keep bl***y well going.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Thanks Tom, It looks very promising.

Best of luck with your treatment.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Hi all, Had my Third Pre Assessment today. I still did not get a PP measurement!!!! The Consultant just said the Lab? must be very busy and they (the Consultants) do not need the actual PP measurement unless my blood indicators are conflicting with each other or there is some other anomaly. Clearly my Myeloma is not going to go to ZERO and the best I can hope for is a figure of around 2.5 for awhile (partial reemission as followed my SCT).

Although my blood HB is dropping now 9.7 (were 10.5) they do not feel that they need to intervene with a transfusion at this stage, might next assessment ? wait and see. My full results for the technically minded are; HB 9.7, WBC 6.12 (was 5.59), Neuts 3.78 (was 2.69) and Plats 129 (was 239).

Generally I feel well with minor side effects that come from the lovely Dex and Velcade. These include, bags of energy to no energy, some constipation, a little bit of Dexattitude and my taste buds are not to clever (OK on strong cheese but milder foods tend to taste of bran flakes) otherwise I am going along fine.

Kindest regards ? vasbyte

David

[PerkymiteParticipant]

Email is a great way to communicate but it can leave so many unanswered questions!

Reading that your post Karen, [b][i]Your disease appears to be in complete remission but MR scan report suggest as if there is still some active disease!![/i][/b] I am not sure whether to congratulate you 😀 or commiserate with you 🙁 .

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Hi Girls, I go for my pre-assessment this Friday 10:15 a.m. So no news as such. I feel good the pain is now under control, although it still troubles me a bit a night when I try to get up for a pee.

I am having the same problems with bowel movement. I take Laxido when needed, just using one a day at the moment (making sure I am at least 1 1/2 hours away from any tablets I have taken). But, I have to say a friend of mine put me onto 8 prunes prior to bedtime and that does seem to work. I use Tesco's tinned pitted prunes 😎 I now regularly take four with my bran flakes and if I have not been 8 at night. If that does not work I resort to Laxido.

I will post Friday as to how my pre-assessment goes.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Well, Basic manners cost you nothing and it is the way things are actually said that generally causes the problems I have found in life.
You can say "No Questions" perfectly pleasantly, and, although it is disappointing to hear, it does not have to be a source of confrontation.

[quote][b][i]People have said in the past, that Dr xxx can be extremely rude, but I?ve never found him to be like that, until last week, where he took rudeness to a whole new level[/i][/b].

This person sounds like a Technical Bully to me from what has been said.
We seem to be lucky in the Beacon Centre, Taunton Somerset, or at least I am. I have never been spoken to other that politely by the our Consultants and even when I rejected the treatment advice (no SCT) and asked for another Consultant (yes to SCT) it was all done perfectly civilly. He was not happy but he was civil.

Kindest regards – vasbyte

David

[Author]

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