Hi Jean,I felt very sick for 10-14 days after both my transplants and lost a stone on each occasion as I couldn't keep anything down, but once my blood started to recover I began eating again and felt much better. The problem is the Melphalan which wipes out the bone marrow making your blood counts continue to drop for at least 10 days after the…[Read more]

Hi Liz/Kev,

I too feel sorry that things are a bit of a struggle for you both. I had the full 8 cycles of Rev/Velcade which worked well in achieving remission after the first 2 cycles. I did get spasms in my hands and leg cramps when the Doctor reduced the Velcade dose after the 3rd cycle which gave relief. I went on to have sct and relapsed…[Read more]

Hi Sue

My own Platelets have been very low since being on Revlimid 19 at the last count but the docs could not decide whether it was the Rev or the MM that was causing it. After having the BMB it was decided that the Rev had stopped working so I was taken off it. I had blood transfusions but never platelets. TBH I don't think the Doc's are…[Read more]

Thank you Eve for your kind words. You are right of course with regards to the availability of trials. I would try anything just to get a bit more time and who knows that elusive cure could be just around the corner. I've never been one for taking no for an answer and I'll be looking for new and different options all the time while there is still…[Read more]

Hi Dai

Yes it's 2 days at the hospital with a 30-60 min infusion on each of the days through a cannula and yes steroids are included prednisolone so I've been told. It's a 28 day cycle but the drug along with the steroid is given in a concentrated form therefore only 2 visits to the day unit per month although my blood counts will be strictly…[Read more]

Hi Kerry

After nearly 5 years down the line 2 sct's and 3 relapses I know exactly how Melvin is feeling. I also have bone damage and have had to modify my previously fit lifestyle due to pain issues. However I can honestly say my mind has stayed strong and focussed and that has kept me going but at times it does get hard to bare. I do hope…[Read more]

Thank you Helen/Jo/Eve/Jean/Andy and of course Tom for your replies. You can be sure as soon as I know you will also know as to the outcome of the BMB. I'm not going to speculate as to the what the result will be as there is no point in doing so as what will be will be and that's all there is too it. I am not down about this but more annoyed and…[Read more]

Hi Jo

I'd say 3 years 6 is great remission,I got only 7 months from Velcade and that was after second sct.
Second is hardly ever as good as the first,I got 2 years 4 from that one. I have been told to lay off the latest treatment until I have seen Consultant on Thursday when he will discuss the BMB result and decide what to do.

Hope Velcade…[Read more]

Thank's Andy,
Had BMB and blood test and got a call from the ward 4pm with the following results.

Hb up from 8.5 to 9.7
Neuts 0.3 to 0.4
Plts down 20 to 19
PP's not known
BMB not known
I've been told to stop all treatment until I've had discussion with Saunders on Thursday at 9.45.
He will…[Read more]

Hi Carol,
Sorry to hear the MM has returned. I've had 2 relapses and just had a BMB today to determine whether I've had no.3 which I will know on Thursday when I see the Consultant to discuss the result of the biopsy. The first sct in May 08
gave me 2yrs 4mnths the second only 7 months and I've been on Rev/Dex since June this year. I don't…[Read more]

Oh Tina I'm very sorry I didn't realise Patrick was no longer with us.
Please accept my apology and do take care of yourself.
This disease is really horrible and I appreciate you bothering to reply to me after what you have been through.

My deepest sympathy and kind regards always.

Keith.

Hello Marlene,
Shingles and Pneumonia are certainly not recommended but believe it or not 20 months isn't bad and beats my 7 by some way. SCT'S are a bit of a lottery with some patients getting up to 7 years then there's me with 7 months.
I had Velcade for my second treatment and it worked very well. I had all 8 cycles before going onto a second…[Read more]

Hi Tina

Thank's for that,I went to the hospital today to pick up my meds and was told they want me in for a BMB tomorrow to find out why my haemoglobin is low, 8.1 at the last count. Something is going on and they need to find out and quick. As for the Platelets every time I ask at what level is a transfusion required I get a different answer.…[Read more]

Dai, I really do hope it all works out positively for you and that you start having some well deserved good health.
It is frustrating when things hit the buffers and come to a halt and then being told there's nothing else to try.
You mention previously tried treatments which I have heard mentioned but never spoken to or read about anyone…[Read more]

Hi Dai,Eva and Phil thank's for your replies. No Eva I'm not having platelets only blood. Platelets are only given when they drop below 10 and mine are currently at 20.Went to hospital today for transfusion, 2hrs and 7 attempts by 4 different people and the cannula was eventually fitted so it ended up a 6 hour day. Dia how long have you had the…[Read more]

I love your sense of humour David and who knows the new you might just be what's needed LOL.
Mind you whatever you do stay off the HRT HAHA. I'm in for a blood transfusion tomorrow and I'll be trying to find out more as to what's going to happen.

Thank's again David and you take care.

Keith.