[PerkymiteParticipant]

Hi Richie, Can I add my Welcome to the rest of the gang. The word you will no doubt pick up that they have used is "Doable". Everybody is different and Myeloma affects everybody differently BUT the broad path is the same and therefore you will find this site very, very helpful as your Mum moves through the treatment.

I was diagnosed in July 2009 and I am just renewing my passport. That is not to say I have not been through some rough times, I have, but – yes, you got it – it was doable. I am now on 2nd Line treatment and things are going well.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Eve, You must write that down and send the information into the hospital. That was appalling. Are you in touch with PALS, it is an organisation to represent the Patient in all hospitals I understand. Have a word with them.

Make a few waves, I can assure you Slim's treatment next time will be taken a lot more seriously if they think things are being reported.

Kindest regards – vasbyte

David

P.S. As a rule I always note or ask for names and then make a point of using them, "nice to meet you Anita, busy to day". It registers every time.

[PerkymiteParticipant]

I did not pick up this interesting thread before. Now I am sitting here having a Dex morning it just seemed to jump out at me.

When I was diagnosed the Senior Consultants words were, "We believe, looking at your medical history, that you have already had MM for 2 years, maybe more." That was in July 2009. And, with hindsight, even I can join the dots together, like a DVD with no apparent cause.

I believe I should have been diagnosed earlier, possibly about 2008 when the DVD appeared at least. Indeed I noticed my own Doctor, a good friend, flush up when it was discussed. I do not believe an earlier diagnosis would have extended my life, I probably would still have had the neck operation, but not under such dramatic conditions, but there you go that is life's rich pattern as they say.

I have never looked for a specific cause for MM, something to blame or I can beat myself up for. I have led a good/bad(;-) ) life and know I have done many things I should not have done, smoking for 20 years for one, but I do not regret anyone of them. Indeed I regretted giving up my favourite cigars.:-(

I have believed for many years that over the last 100 years human beings have got too clever by half and as a race we have poured to many Chemicals/nuclear emissions/ CO2 etc?etc? and the like into the atmosphere, food etc? etc?, not just in England but all over the world. And, the human race is now reaping the downside, look at the projected statistics for Cancer recently released.

I am NOT saying as a race we should not have done these things what I am saying is that when we were busy doing them we did not realise the implications or if we did they were brushed under the carpet at the time, possibly in the name of progress who knows, or just because it was necessary to feed and keep warm the ever growing world population.

And, there my friends, is possibly the nub of the problem; an ever expanding world population, we are breeding like rabbits (sorry rabbits) and it has got to stop? A heading for another Dex morning I think. 😎

Kindest regards ? vasbyte

David

[PerkymiteParticipant]

Sorry Anthony I have no idea. I think you are in Dai's area of expertise maybe?

Kindest Regards – Vasbyte

David

[PerkymiteParticipant]

You do not know just how lucky, Helen! I knew I had damaged my neck trying to get out of bed. I got myself back onto my bed with my head supported by my pillow and held my head square. The ambulance guys came along and said "Oh, it will only be a strain" and one started to put his hand behind my back to lift me out of bed. It was the other guy who quickly said hold on lets stick a collar on him just to be on the safe side :-/

Kindest regards – vasbyte

David

[PerkymiteParticipant]

What lovely words, [u][b][i]Paraprotein not detected so you are in complete remission[/i][/b][/u] 😀 😀

I never got there but then I did not expect to get there 😀 .

Keep going Karen, just keep going.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

You are going through the mill there but the care looks good from what you say.

Was your picture taken at a street Carnival. I was stationed in Germany for 19 months – Dusseldorf. Some of the best months of my life. Mo and I had a great time. We mixed with the Germans and made an effort to speak German, we were sad to leave.

Hope all goes well for you.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Hi Trish, I developed a circle of four spots on my left forearm. I pointed it out to the Nurse on my treatment day. Two staff nurses came and had a look at them and decided it was not a problem but, as a precaution, my wifey should exam me once a week after treatment. Any more should be reported immediately to the Heamo Ward. They seem to be fading and I have no more to date. I have no other side affects, accepting normal Dex problems, to talk off.

Kindest Regards – vasbyte

David

[PerkymiteParticipant]

Hi Anthony, I wish you the very best of luck with your treatment. I think I would have made the same decision with regard to the trial.

I had my surgery in 2009 and it has been great. Pictures attached – if you can bear to look at them. I had the Collar on from 6 months and it came off just before Christmas – wow what a Christmas present.

Kindest regards – Vasbyte

David

[PerkymiteParticipant]

Hi Trish, I am on Cycle 3 – 20mg Dex plus 2.5mil of Velcade (by infusion into my stomach) twice a week for two weeks and then one week off.

It is well known and recognised that having the Velcade by Infusion reduces the incidents of PN. At present I have no PN and I had it badly in 2009 when I was given it at my original diagnosis.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

I use Vasbyte (grit your teeth and Bl++dy well go for it :'-( ) Mari ever since my SA relatives introduced me too the word, when I am in trouble or or pain I use it, in my mind, a lot.

I was told right from the start that I would only get one SCT (70 years) but as it happened I only harvested enough for one. A blessing in disguise who knows!

Got to go going to play World of Tanks with my son and Grandson:-D

Kindest regards – [u][b]VASBYTE[/b][/u]
David

[PerkymiteParticipant]

I was so sorry to read your post Mari, when I read about the pain and suffering people like your Steve are going through I do feel I have been so lucky. It is not easy for anyone with Myeloma, I have had and continue to get my problems but some just get a rougher ride than others. Just following life's pattern I suppose!

I wish Steve all the best of luck and a speedy recovery.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Hi Pauline,

Your questions have been answered it would seem and some very good advice from both perspectives I think. I just wanted to say how much I loved reading your "rant" great one well done 😀 :'-(

On the question of partners in or out I am in the "in" camp. Mo and I tend to do all things together anyway. We both attend the meetings and we generally discuses what we are going to ask before we go in and usually I will do the asking but Mo takes part in any conversation. It all feels quite natural.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Hi Eve, Yes I remember your posts about Velcade not working for Slim.

I really do not think in terms of remission and I have not done so for some time. I tend to think it is time gained – another valuable day to be used wisely. I think you have totally the right outlook when you say, [i]"This Myeloma is not going away, so it will just have to come on holiday with us"[/i] Bang on 😀

We are taking a hopeful look at maybe end of Sep beginning of Oct, just after my treatment ends, to go to Greece. Might even go for 2 weeks as we are not sure we will get another chance, remember I have Advanced Prostate Cancer hanging around in the background :'-( .

Anyway have to go Mo is waving the wine bottle – oh ok why not – just the one;-)

Kindest regards – vasbyte

David

[PerkymiteParticipant]

I noticed on yesterdays injection that I have 2.5 mg of Velcade.

I am one week ahead of you. I wonder why some have Cyclophosphamide and not others, it must be something to do with their treatment position in the whole scheme of things perhaps, I will ask at my next assessment.

They now seem to have my bone pain under control and the change over from Loron tablets to Pamidronate infusion seem to have been accepted by my body. I think this change in medication was a lot to do with the sudden increase in the level of pain, they did warn me!

I am a real power house on Dex days, wish I had this stuff when I was a runner I would have won the Olympics! although I suppose they might have banned me!! Biggest problem is I cannot sit down for two minutes in a row he he….

I get constipation, although the Consultant asked me about loose bowls and upset stomach. My skin is dryer than normal but no real dry skin problem. I have always had very oily skin though, it gave me lots of acne as a kid.

My appetite has risen and I find I am looking for chocolate biscuits etc… I went through a short period, about a week, where everything tasted like dry biscuits but that seems to have gone this week.

Are Yes, the Old Dexattitude, when I start getting uppity Mo just ignores me she tells me. I do actually try to control it as soon as I realise I am getting aggressive. I am not a naturally aggressive man.

Sleep wise I am not doing to bad. I take my 20 mg of Dex in the morning about 8:00 am and I find this does help with sleep. I normally am off by 1100: p.m. and wake between 5:00 to 6:30 a.m.

Teasing Mo is so much fun. It is little things, good example. We have a rotary washing line. Yesterday Mo and I were hanging out the washing. I noticed she moved the line around to put on the next lot of washing. So I took some clothes and went around the other side to put them up, instead of staying where I should have done. She said you silly so and so I have just moved the line around for you, then, she realised I had done it deliberately. Not a big deal but it raised a laugh with both of us.

Kindest regards – vasbyte

David

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