[andygParticipant]

Hi everyone one.
Hope you all had a good time over Xmas and new year – well as good as possible as this bloody horrible disease is no respecter of holidays.
I've just started my 11th cycle of Revlamid (RCD) so I'm a bit hyper with Dex 😉 It seems the previous 10 cycles have flown by. Hopefully I'll be on it for a lot more cycles to come – fingers crossed, touch wood and all the other good luck actions I can think of – not the I'm superstitious or anything. I've not had any luck with my previous treatments and as most of you know SCT has been almost all but ruled out for me 🙁
Anyway sorry I've been missing the passed few weeks but I've been socialising a bit – getting out and having a few drinks with friends some of whom I haven't seen for years. For the first time in well over a year I actually feel ok-ish not brilliant but the best since treatment and all these drugs started. I'm making hay whilst the sun shines ( as it snows outside lol) because who knows how long it'll last.
I had a good chat with Keith on Friday at the day case unit. I was in for blood tests and Zometa Keith was in for blood and platelets. I really hope your new/old treatment works Keith and gets your PP's down without compromising your other blood counts.
Dai I hope you have better luck with bendamustine than Keith did and that the c.diff is finally defeated. I think Scotty is on bendamustine too I hope it's working well.
I'm interested in how it works and possible side effects of bendamustine because I suspect it could be my next port of call.
Wendy I'm well impressed you're pressing on with training for your triathlon in June even though you suspect you are relapsing. I was diagnosed 18 months after first feeling back pain whilst training for the 2010 London marathon and I've not ran since:-(
Right that's enough of my Dex fuelled ramblings for now except for the sad task of welcoming all the newbies to the warm and friendly forum and wishing you all every success in the war on myeloma. Oh and of course I wish the old hands every success in their continued battles.
All the best everyone
Take care Andy.

[BADGERParticipant]

Hi ANdy
Superstition or not fingers crossed that this treatment is the one for you as you must of read SCT is not now concidered an option by a lot of at least American doctors less is more! SCT was not an option for me either so i am hoping that first CDT which gave me 3yrs6months remission now on Velcade Sub Q hope it works just as long have to say there is a lady in my support group who has been on Revlimid for five years our MP fought to get it for her in the first place as nice hadnt approved it then she is now on a half dose and no sign of PP,S so this gives me a lot of hope especally about new drugs in the pipeline
Keep fighting:-)
Love Jo x

[EvaParticipant]

Dear Andy,
Good luck with your treatment. I'm so glad your'e getting out and about. I've had visitors for lunch and I'm always pleased when we can have people over. We live in the north of Scotland and most of the time all we see is a passing buzzard! The scenery's great though….
Best,
Eva

[wendyduffieldParticipant]

Hi Andy

I'm glad to hear you're feeling a bit better and stronger and I hope you manage to get your holidays in. I hope that the revlimid does the job for you, 11 cycles and continuing! I intend to do the triathlon as long as I am feeling well which I am, off to India at the beginning of March, somewhere I never thought I would be going after diagnosis. You're absolutely right, we've all got to make hay while the sun shines 😛

[KeithH17Participant]

Hi Andy,good to see you in fine fettle as usual LOL. For 2 guys who supposed to be ill we don't look too bad do we? Nice to see you also Steph. Starting to feel tired now and no steroids for the next 4,days
the comedown starts as of now. Patrick was in later and is starting a new treatment in order to get his marrow activated, all very complicated. Anyway take care Both of you and no doubt I'll see you soon.

Keith.

[tomParticipant]

Hi Andy and all

Pleased your doing Good Andy and I as a MM'er super glued my fingers crossed lol (only joking lol) your doing well Andy and am sure its a blessing for those that have had to start new treatment to know people like you do well with it 😀

Keep going strong My Friend and stay strong.

Tom Onwards and Upwards x

[andygParticipant]

Hi Keith it was good to catch up with you yesterday. It's always good to see you. Though obviously I'd prefer it to be somewhere other than the day case unit. I hope your transfusion went ok and your energy levels start to pick up a bit.
Patrick was having trouble keeping his HB's up and he like you was having regular transfusions. I hope his new treatment does the trick.
My blood tests came back ok 😉 though my potassium was borderline. Note to self – keep up with the bananas!
My latest PP'S are 18 – still falling slowly – down from 21. Averaging a fall of 2 per cycle. Not a big movement but its the right direction. Get those fingers superglued Tom lol.

All the best all
Andy

[VickiParticipant]

Andy

Glad to hear you are feeling well and yet again those pps have dropped…..doesn't matter 2 a cycle is good. Maybe this mm is giving up the ghost as you and the treatment continue to battle it. Another Greek holiday and that sunshine should just about finish it off I reckon!

Keep going and take care

Vicki and Colin 🙂

[jillsParticipant]

Hi Andy,

Thanks for posting about your experience with RCD, good to hear you are doing well. My Mum is about to start the same treatment (she had CTD first, then Velcade which only gave her a few weeks reduction in PP – not very good value for money for the NHS!), but is now going on to Revlimid with Cyclophosphamide and Dex. She will start sometime over the next couple of weeks, once we have managed to get to the hospital to sign the consent at the moment we are snowed in!
My worry is that she is 83 and there don't seem to be many people on this forum of that age having this treatment. She managed OK on CTD so I am hoping this will be similar.
I hope she does as well as you seem to be and that it works to reduce her numbers. I guess we just have to get on with it and see how it goes. Not really want you want to be dealing with at her age, or any age I know…
Take care,

Jill

[Author]

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