[ozzyParticipant]

Dear Eve
So sorry hearing this news Slim put up a valiant fight. Our thoughts are with you and please take care of yourself.
Paul & Gayle xxxx

[ozzyParticipant]

Hi
Pauls been on maintenance Rev this is his second month, He is on 15 mg daily 21 days and 7 days off. He is taking it along with soluble aspirin for the blood clots. So far hes ok. Hes had 6 courses of CRD feb – July of 25 mg so his system was used to it. He hasn’t had any problems so far except very dry skin. He will be on it as long as his body responds.
Good luck and hope you feel better soon.
Gayle

[ozzyParticipant]

Hi Stephen
No-one has the same response to treatment as others so I just go with the flow. My pps went up to 49 when I originally had CRT and then when I had my SCT and my pps stayed at 5 and never zero. That lasted 18 months and then went on velcade last Jan 2013 3 cycles and my pp went down to 7 from 48. That lasted 6 months before rising again to 50. I have just started CRD so who knows!!! Have you managed to go abroad on your rev maintenance???If yes how did you manage with the travel insurance? They have mentioned that I too will be on maintenance when I plateau and bad news off you then is that the Clexane continues I am bruised already after 10 injections!!!
Good health
Ozzy

[ozzyParticipant]

We are truly gutted by this news Dai was a true fighter and an inspirational man. Our condolences and love go to Dai's family.
Paul & Gayle
xxx

[ozzyParticipant]

Hiya Eve
I know exactly how you are feeling and I think its difficult for people who are not caring for loved ones with such a cancer like mm to appreciate how hard the day to day worry is.
I am Paul's wife Gayle and I think being a carer is very hard. We are on this rollercoaster of emotions and I personally feel very bitter what life has thrown at me. I am 53 and Paul is 59 he has had myeloma since Jan 2010 and it is now the children are more independant (still both at home mind!!)I constantly worry about him dying and feel bitter as we should be going on lovely holidays and planning for our future but for obvious reasons we cant and I get envious of my friends and feel very sorry for myself sometimes.l always ask that question why us? Paul always replies why not us? Paul has finished work June 2012 as he was catching so many infections and this has worked as he is defo healthier but he gets very bored and is missing company as I work part-time.He has had one sct in 2011 but relapsed after 18 months has tried to harvest again at May this year but only managed half the amount needed so they are resting his marrow to try again later this year. He is panicking now how is blood is doing and we as carers have to reassure him whilst inside I a truly panicking myself.I have to make light of things for him keeping calm when temperatures go high when his back etc starts aching when he has pn in his feet. To add the pressure on I have been diagnosed with GMUS and the thought of it developing into MM and me having to go through all this myself is worrying enough!!!
Lets pray they find a cure soon.
Gayle xx

[ozzyParticipant]

Dear Mari
So so sorry to hear your news. We are thinking of you, no-one can take your happy memories away, just think of them.
Stay strong
Love Paul & Gayle x

[ozzyParticipant]

Good news you are feeling better and more up beat. Keep an eye on the pn I have permanent damage in my feet and they are always tingling(dancing I call it!!!) and very painful to touch.Here's to another good weekend for you.
Good health
Ozzy

[ozzyParticipant]

Hiya
12 days and home that's great. They keep us in 21 minimum down here in isolation. You take care and dodge those germs and try not to do too much in one go.
Well done and good health.
Ozzy

[ozzyParticipant]

Hi Tom
Can't believe this has happened to you…..So sorry for you mate that you have to go through all that again.I had my 1st sct in Jan 2011 and I'm due to go in again for my 2nd in the next few weeks. I had problems harvesting the first time and was on the machine for 2 days. this time started 24th May with the chemo primer and injections for 7 days but still not producing enough cells. I have waited weeks but have now had the go ahead for perixafor and on 27th June will start injections a again hoping to harvest on the following monday.
Good luck on your journey it looks like we may be on that journey together.
Ozzy

[ozzyParticipant]

Hi Sarah & Scott
It is a good place for info isn't it? I too am in a delicate situation.I relapsed in Jan had Velcade & dex till April but suffered so much with pn that they stopped it and had one course of rev & dex.My pps went from 49 to 5 so on 7th May went into hospital for the chemo priming for second sct. Had 8 gcsf injections but on Sun 12th had to go to A & E as I had chest pains (which were from injections). On wed 15/5 went to hospital to harvest but my figure was only 5 and they needed 8 so came home after 4 hours with another gcfs injection. On thurs back again but still no joy not enough cells. I am now in no mans land, They mentioned Perixafor but I think they are quite expensive and I will have to see if I can have them.My netrofils were 0.5 in a& e and I now have a cough & cold.So lets see whats next in store. Ill let u know.
good health to all
Ozzy

[ozzyParticipant]

Dear Sue
Our thoughts are with you at this sad time, you have wonderful memories of the good times, Keith will be sadly missed.
You take care of yourself
Paul & Gayle x

[ozzyParticipant]

Hiya David
I hope the Velcade works well for you. It got my pp's down from 49 to 5 in 12 injections but unfortunately I have had to stop it as the pn got so bad I couldn't stand it.I have been off it for two weeks and my feet havent come back to normal yet. I am now on Revlamid & dex and waiting to go in for a second sct.
Good luck
Ozzy

[ozzyParticipant]

Hiya Eve
Dont know how to private email you so answered question by here. I don't know if I am on any trials but treatment was Velcade and Dex. They hit the pps down from 49 to 5 but the pn is so bad this week they have stopped this treatment. My feet have suffered and I cant sleep with them tingling and aching. My consultant is contacting the Prof at Univ Hospital Cardiff to see if I'm readY for sct number 2. I had the 1st one Jan 2010 so it didn't last long so I am worried how long this one will last. I have had 4 lots antibiotics since Jan and my chest/lungs are still producing green gunk!!In the beg I had 2 velcade per week for 2 weeks and then 1 week off. On the second week my fingers were tingling and I had high temp and overnight stay in a& e so they did it 1 weekly after that. I hope Slim can tollerate it better than me cos it seems to work well. Sorry I didn't see the email earlier.
Good heath
Ozzy

[ozzyParticipant]

Dear Eve
Its gutting when the remission is over and the myeloma comes back I know because I am in the same boat as Slim. If the Velcade worked the 1st time it might do the same again. It seems to be working so far for me and it has hit the pps from 49 down to 5 so dont give up hope.
Ozzy x

[ozzyParticipant]

Hi Jean
My hair was coming out everywhere and it was all over my pillow I mentioned it to the nurse and she shaved it all off – I looked like Kojak and when Gayle came to visit that night she screamed. It soon started growing back and by 2 months later I looked like I had a curly perm and thick with it.
Best wishes
Ozzy

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