[PerkymiteParticipant]

I hope it goes well, the very best of luck. I remember when I first got home after my SCT, it was bloody marvellous.

My kindest regards – vasbyte

David

[PerkymiteParticipant]

MY HERO, I should be starting Revlimid and Dex this Friday. I have my head scan on Wednesday at 8:50. I have told them they will not find anything. my friends have been telling me for years that my brains are in my "bum" 😀

I am hoping that I can now organise some quick Radiotherapy after the debacle the last time. My ribs are giving me real problems now.

Enjoy your anniversary on the 8th, 100th?, I love the Lakes area. Unfortunately it was raining the hole time we were there, forced us to stay in the Pubs pretty much all the time 🙁 .

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Hi Eve, Sorry to hear of your problems. And again sorry if I have missed something here but why not 'phone our Myeloma Nurse?

Kindest regards – vasbyte

David

[PerkymiteParticipant]

The real question is with insurance are your illnesses, such as Myeloma, INCLUDED or EXCLUDED. If they are excluded then I am afraid you are wasting your money.

kindest regards – vasbyte

David

[PerkymiteParticipant]

Hi Trish, Dai and Eve have answered your questions but I thought you might like to know of my experience on Velcade.

I only lasted 4 cycles. I had severe Peripheral Neuropathy in both legs. My PPs had come down to 8:00 but they were on the way up again going up to 8.4 when I saw the Consultant. He pulled me straight off Velcade. I am still suffering with PN in both legs and it looks like it will be a long haul to get rid of it.

I am now due to start Revlimid and Dex on the 4th Oct. I am not looking forward to the Dex. From what I gather Revlimid is quite a mild drug and has only a few side affects, At least that is what I am being told 🙂 . I am keeping my fingers crossed that it will give me some more time, I still have my Family tree to finish plus scanning in 70 years of photographs into my computer and lastly I have not quite finished my Coffin 😀

I am awake at the moment, 4:44 a.m., because I just cannot sleep following the death of my Sister-In-Law yesterday at 6:00p.m. She died quite suddenly from an undiscovered cancer. My wife and I were with her when she died and it was very peaceful. She was like a big sister to me and I loved her as such. The coming days will be so hard for my wife.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Enjoy your retirement Maureen.

I always used to say that I would never retire – I enjoyed work. When I finally decided to retire, at the ripe old age of 55 I never ever regretted it. At first I took a little job driving a white van for Boots, MD to Driver in one day :-D. 16 hours a week but it was real good fun. No hassle just pick up the bags and deliver them end of day go home no worries.

And, now looking back with MM and APC I am so, so pleased I did and we did all the things we wanted to do. It has been great.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Ahhh, now that is better – back on track.

My letter to all involved and my Doctor brought immediate responses and apologies from those concerned in the c**k up.

My next assessment has been brought forward and I should start 3rd line treatment then.(I use the word "should" as opposed to "will" when I have it confirmed at my next assessment). I have now had my Chest X-ray. We have agreed to hold the radiotherapy until the X-Ray results are discussed at the assessment, this is mainly because I now have no left side chest pain at present.

They have also accepted that the patients do not like the Merry Go Round of consultants, where your assessment is taken by which ever consultant picks up your file. I have now been taken off that and will see just one Consultant in future. Frankly none of this would have happened if this had been in place from the start.

Thanks for the support Guys & and Galls (or is a Gall now a Guy 😐 )

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Hi Catherine, As usual I agree with Dick's sensible advice.

I was 68 when I was diagnosed, I was a fit man who always kept in trim and ate the balanced diet, did not smoke and drank in moderation well ok little bit of distortion there :-D. I broke my neck getting out of bed and found a dam great tumour had eaten my 4th vertebra for breakfast.
That was in 2009. I have done the Stem Cell Treatment, 2nd line treatment of Velcade and am about to start 3rd line Revlimid. Do not worry about the names at the present time, you will pick them up the more you correspond.

My point is from what you have described your Dad and I are about the same so I would not think he is about to drop down dead. He will be there to see you Graduate in fact he will probably latch onto it as one of his driving forces. So do not let him down young lady :-/

As Eve, another one I always agree with, has said, speak to Ellen the call is free and she will send you lots of information and she can answer many of the questions you have.

Best of luck

kind regards – vasbyte 🙂

David

[PerkymiteParticipant]

As if to add timber to my fire I have received this morning, 14th Sep, a letter dated 10th Sep about My Assessment on 16th August! This letter set outs in detail all the treatment I should have had in the past month. :-S

Kindest regards – vasbyte indeed

David

[PerkymiteParticipant]

Yes, I have looked at joining our local forum. Undecided at moment because I still have three major things to do before I pop my clogs and I do not want to interfere with those. We shall see.

Kindest regards – vasbyte

David

Felt a lot better after getting it off my chest. I am going to attend the Care and Quality commission meeting and have started putting my arguments on paper, so they are not forgotten.

[PerkymiteParticipant]

Sounds a great trip Maureen, says me green with envy.

Wherever we have gone in the world we have lit a candle in the local church, be it giant cathedrals or a humble one room shacks. We started at the death of our young son Robert, in 1986. I find it spiritually a real nice thing to do and it gives me a lot of satisfaction.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Hi Topcat this is Perkymite.

Welcome to the site.

I have and still do post on many forums and I have been on this one since Jul 2009. So I can reliably inform you that there is no rigid protocol to follow, it is very relaxed here.

You seem to be doing really well. So keep it up.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

😀 😀 😀

What more is there to say!

Must go, the wife has just come home :-0

Kindest regards vasbyte

David

[PerkymiteParticipant]

Hi Jean, Just spotted your post.

I was pulled off Velcade for the same reason. I get the electric shocks in my feet sometimes it is just a split second other times it can last a few seconds. My legs feel very, very uncomfortable all the time, right up to the hip and I have to wear bed socks when I go to bed. The skin feels detached from the muscle.

Like Slim I generally get up at least twice in the night to have a little walk around the bedroom. I am very prone to cramp in the legs and I am very quick to react as soon as I feel it starting. I gently move stretch out my legs until the warning signs go.

To be honest I do not take any pain killers for it. In fact I am reducing the amount of morphine I take each month. I have gone from 80mg in 24 hours to 20mg in 24 hours. I am not suggesting you do the same your situation is entirely different from mine and you should obviously consult your Doctors before reducing any medication.

I intend to bring the matter up with my Consultant on Friday, this week, and if I get any pearls of wisdom I will post it. I am not hopeful the last time I was, very nicely, told it might reduce over the next two years! (LOL I should live that long!)

Sorry I could not be of more help.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Is that a mischievous invitation Eva 😉 I am 70 years of age and a married man you know, but, always up for a challenge 😀 😀

That trip was great for many things, I think hearing my Son and his Fiancé, two of my Grandchildren and my Wife laughing hysterically in the pool playing with a ball, although I could not join in, was brilliant. It really is the small things in life that can give so much pleasure, if you just pay attention.

We have a trip planned for November to a Lodge down in Cornwall. It will celebrate our 51st and my Son's 50th birthday. Incredible when you think I was told quite clearly that I would not make my 50th wedding anniversary. It will not be swimming and barbies on the beach, at least not for me, but huge log fires and good champagne in a hot Jacuzzi. I am really looking forward to it.

Kindest regards – vasbyte.

David

p.s. I just thought I had better mention Eva I wear bed socks at night 😀 😀 😀

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