[PerkymiteParticipant]

Just wanted to wish all the Best Tom, chin up you will soon be through this.

My worse time came at the end when they took out the central line I had in my chest. It spread a load of infections and I was quite poorly at the time. So keep a good eye out 😀 , and do not play the hero if you feel ill say so.

kindest regards – vasbyte

David

[PerkymiteParticipant]

Hi Mandy, I have just finished my 4th cycle of Velcade, my pre-assessment day is this Friday.

I too am getting the "heavy legs" symptoms. Or at least the muscles in both my legs, below the knee, feel tight and uncomfortable. They seem to work ok however and I managed a good 4 hours on them yesterday walking Mana, my Son's partners dog. They just feel uncomfortable below the knees as you say.

I will mention it on Friday and see what the Consultant says and report back.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Hi Apple, Over the last 3 years I have heard many arguments regarding drinking the 2-3 litres (6 pints).

When I was told in August 2009 that I had to drink 3 litres of water a day to ensure my liver and kidneys were kept as clean as possible. I asked the Consultant what it included. He said simply it included water full stop. He said it is in my own interests to ensure I drunk it and not to listen to arguments about cups of coffee or decaph tea etc…etc … 6 pints a day end of story was his reply.

Ever since then I have basically complied. Every morning I fill 6 x 500 mil bottles with tap water. I put then on the side in the kitchen and ensure that by the time I go to bed they are all gone. I have taken the odd day off when I have to or drunk a little less because of circumstances of the day but 98% of the time I have complied.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Hi Apple, I was actually told to put on weight and maintain a stone over my fit weight it I could. Normally 11 to 11 1/2 stone is my weight but I have maintained 12 1/2 stone ever since 2009.

I have always said I do not mind being bald, and I cannot do anything about being short but I am blowed if I am going to be Short, Fat and Bald. And here I am with a little pot belly ahhhhhh :'-( on doctors orders !!!!!! 😀 😀 It is not to bad and I feel good and people say I look fit and well so it is not all bad.

Are you drinking the 6 points of water a day?

Kind regards – vasbyte

David

[PerkymiteParticipant]

Nicely put Richard, well done.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Hi Gill, How nice to hear from you again. I think what you did was marvellous, it will make it all so special for you.

Just hang onto those Memories Gill of which I know, from your posts, you have many. You are right the pain will never leave you, it dulls but it will always be there. I lost my 19 year old son 26 years ago but his memory can still brings tears to my eyes, but also laughter when I think of his antics :'-( 😀

OK, time to get on with life, as I am sure Steven would have said.

All the very best of luck to you, and the dogs.

My kindest regards – vasbyte

David

[PerkymiteParticipant]

Hi Apple,

May I wish you a warm welcome to the site.

I have been on the site since 2009 and I think that is the first time I have seen somebody ask about reducing sugar for Dex. I assume you are referring to the Lactose that Dex contains and have been told by your Doctor that you have an intolerance to some sugars?

We do have one or two "herbal" people on the site and they will no doubt pop in and help you.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Hi Andy, There isn't a lot you can say to those results. God, (sorry God)you must get so frustrated some times, I know I would. Did I read somewhere that after 18 cycles of Revlimid the Pharmaceutical Company pays for it not the NHS (not that it makes any difference to you I suppose)! Probably got myself confused here.

I am trying with the holidays Andy, I really am. Got a week booked in France in August, curtsey of my Son and Fiancée and we are looking at the Brochure's for the holiday in Greece Sept/Oct. Honest we are trying to keep up 😀

Just taken my Dex it is the last day of my 4tyh cycle for Velcade. I think I get my Pamidronate as well today

BUT it is a big celebration day for Mo and I, today we have no debt. The Mortgage is paid and finally the CAR is our own 😎 with the last payment today. Just Council tax, water rates, Electricity etc… etc.. etc… :-(:-(

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Finally got my Para Protein reading 8.1 pp. So that is down from 17.1.

I am told the big jump comes in the first 2 cycles and then it slows down. So, my hoping I will get to around 2.5 might be a little optimistic but you never know. I am not really sure how many cycles I have to go, I will ask next time and I will ask if the plan is that I go onto maintenance Velcade I have heard one or two of you mention.

Kindest regards – vasbyte

David

p.ss Yes, it is a Dex night 😀 😀

[PerkymiteParticipant]

If you mean UK then I have and still do travel extensively, We pick somewhere we have never been and go there. I will not bore you with the itineraries but take it, it is from Lands end to John O'Groats, that is in or out of reemission for UK.

Overseas, I have been to Spain and the Balearics but I would only do that if in remission, or not on active treatment. Mo and I are hoping to go to Greece when my next course of treatment is finished end of Sep beginning of Oct.

The lad you need to speak to is AndyG (my Hero), trouble is he is probably off in the Med somewhere at the moment:-D .

Kindest regards – vasbyte

David

[PerkymiteParticipant]

I think the description of being on a "roller coaster" ride is very apt. I am 2 years post SCT and am now on 2nd line treatment (just finishing my 4th cycle this week). I have always had ups and downs regarding energy levels. More so now I am back on Dexattitutde.

When I first joined this forum in 2009 you used to hear another phrase very often "Listen to your body" if it says rest bl++dy well rest".

I will take issue with several of you. You give the impression you have not watched the MyelomaUK excellent What is Myeloma Video. If you have not you should, Myeloma attacks and weakens bones. Repairing a broken Myeloma bone is not routine. The last place any Myeloma sufferer should be is up any sort of Ladder, ever! :-S

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Well done Tom, The youngsters put up +1 when they like or support a posting can I put up +101.

If you read this Sue keep going, just keep bl**dy well going.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Hi Dawn, We are considering a holiday to Greece when my treatment, I am presently on 2nd line treatment Velcade, is finished, end of September.

My wife has worked in insurance for 30 years and at present works part time (10 hours a week) at an insurance broker.

Regrettably she sees all to often the disastrous results of people trying to get "good deals".

Her advice would be.

A. Get both your Consultant and your Doctor to agree that you can do want you want to do.

B. Ask the Doctor for a print out of your Medical Record and then ask him to cross out the items you do no need to declare.

C. read EVEY line of the policy document document you are sent and if you do not understand it ask the Insurance Co to explain it.

We use a Company called City Bond. they are not the cheapest but they cover everything we need.

Enjoy your hols

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Hi Annette, I am so very sorry to read of your Dad's troubles and the rough time you are having. Reading your posts you seem to be getting very little help from anyone. I hope this is not the case.

You should, as has been said, have a Cancer Nurse or hospital contact number you can ring for help and advice. Has your Dad got any medical documentation, like a booklet there might be telephone numbers in there. In my experience the local GPs are no good they know less than you about Myeloma. Seek help from the hospital if you can.

all the best of luck

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Hi Trish, I have been following your troubles. Can you not get anything stronger than Tramadol. Could you ask to be referred to the hospital Pain Team, if they have one.

Chin up I hope all goes well with the op.

Kindest regards – vasbyte

David

[Author]

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