[andygParticipant]

Hi everyone.
May I first welcome all the new members to the forum. We seemed to have gained a lot in the past months. I do hope that its not an indication of a rising rate of myeloma but more an indication of the success of MyelomaUK in getting its message out. I hope you newcomers find this forum informative, supportive and inspiring.
Sorry I haven't posted for a couple of weeks but after seeing the Prof. and receiving the bad news about not being able to go forward with the Allo Sct nothing much has changed. Which in itself is good news. Anyway today marks the start of cycle 10 of RCD and the wonderful effects of Dex!
Tomorrow I go to the hospital for my monthly zometa after having my blood test Friday. The results of which were ok, just waiting for my PP results :-/ I'll also be having a consult with my consultant and see what her take on the Prof.s announcement is. I'm guessing she'll just confirm I'm at the wait and see stage and hope the RCD will keep my PPs under control.
By the way even though I've not been posting I have been reading all the posts. It's good to read all the good news that's being posted recently and the seemingly eternal optimism shown in the face of such a devastating disease.

Keep up the fight
All the best
Andy

Ps. Tom this was typed out on my new iPad mini – onwards and upwards

[angeParticipant]

Hi Andy

Just thought how nice your welcoming message was. I joined the forum in August and have attended the Cardiff info day. I am asymptomatic but followed closely at clinic. After reading these posts and meeting people I feel in a much better position to deal with whatever happens in the future knowing there is always someone here who can help. I hope that you keep as well and strong as possible.

Best wishes Ange

[meganjaneParticipant]

Hi Andy,

Phil and I are relatively new members and we have found the forum very useful, it is so nice to know you are not alone and most things we have experienced some one else has been through before. It is also nice to read the good news because as newbies it can all seem a bit overwhelming at the start of the journey.

I hope the RCD continues to keep the PP numbers down.

Megan

[tomParticipant]

Hi Andy

Well we are posh ???? IPad mini handy ain't they.
Am same as you Andy hope it's the word getting out and not a rush of poor beggars with MM
Keep well Andy and as you know Onwards and Upwards.
From my IPad 2 😎

[HelenParticipant]

Hi Andy
Sorry we aren't getting together this week, I go for the Zometa and clinic tomorrow, I'm glad you seem ok perhaps we could get together in the New Year?
Love Helen

[andygParticipant]

Hi all.
I had my zometa today errrr yesterday which was administered with the usual effiency. Then we had our meeting with my consultant. My paraproteins have drop slightly again from 23 to 21 – not brilliant but moving in the right direction. So I'm putting it down as good news – we haven't had much to cheer about since diagnosis Oct 2011. She asked me the usual questions about side effects and aches and pains. I had nothing much to report there but she's going to book me in for a MRI scan anyway. We asked about what the options were when the Revlamid stops working and she ran through some drugs old and new and said optimistically that Revlamid wasn't the end of the line. I asked about previously "failed" therapies that had brought down my PP's only slightly but had held it in check ie they didn't increase wildly and she agreed they could be looked at again.

Dai – when we mentioned that SCT was out of the question now she said there was still a very slim chance of an auto Sct.
For that to happen I would have to get my PP's right down and then come off the drugs long enough so that my bone marrow would recover enough to produce enough stem cells. Like she said a slim chance but a chance and a better chance than an Allo Sct. at this moment.

Helen – we had to make do with a coffee in the day clinic down here today mind you it's free here 🙂 missed our post consult chat. Hope everything goes well at the clinic. Yeah getting together in the new year would be good we'll just have to arrange a time and place that suits.

Tom – as you say if the doc's smiling it keeps you smiling. Well we left the hospital smiling 🙂 onwards and upwards.

The fight goes on.
All the best
Andy

Ps. Yes this is a Dex wide awake night 😛

[PerkymiteParticipant]

Great post Andy. I wish you all the best.

Kindest regards – vasbyte

David

[DaiCroParticipant]

Hi Andy,

The slim chance of an auto SCT is quite good given the previous answers. 😉

Cycle 10 is good, you may well go to and past the median for Revlimid which currently stands at 30 months/cycles… I really hope you do. 🙂

Dai.

From my laptop in Room 2, Fletcher ward, City Hospital, Nottingham. 🙁

[VickiParticipant]

Andy

Great to hear from you…we wondered how you were getting on! Hey those pps have come down a bit which is absolutely great, that's the right direction. I told you it's the benefit of having that Greek holiday. When there's a slim chance there is always a chance! There's also the plerixafor to try to prize those cells out of the bone marrow when they've recovered a bit!

That's got to be good news and the options for trying old and new drugs as well!

Great news and when you've not got much to report to the consultant then that must be good too!

Happy Christmas to you and steph

Vicki and Colin x

[VickiParticipant]

Dai

What are you doing in hospital 🙁

That's not good news!

Vicki and Colin

[andygParticipant]

Hi folks.
Thanks for all the replies.
It does help boost morale that you all take time out of your own personal battles to read and reply. I read the posts all the time but sometimes find it difficult to post my news or give my insights when there's so much good news going around and so many new members on here with me being a difficult case.
The ironic thing about my battle is that most of the time I'm ok – I get a bit of nausea from the cyclophosphamide and have an achy back oh and not forgetting tiredness 😉 but otherwise look (you need to check with Steph if that's true) and feel fine. Which is a great improvement from where I was a year ago. I was tucked up in my hospital bed with a very painful back drugged up to the eyeballs not interested in anything. I know my case of not responding to treatments is rare, or is it, I just don't think new members want to read it. Maybe I'm wrong over to you the newly diagnosed and new members.

Vicki & Colin – you've both been through a roller coaster these past few months hopefully it will be plain sailing from now on. The battles you've gone through to get to this stage are behind you and will fade with time. Here's to a short recovery for Colin and a long long remission.
Now then where's those travel books for Greece 😎

Take care everyone
Andy

[HelenParticipant]

Hi Andy
Free coffee!! Well not round here it isn't. V expensive here! And we do want to hear about how you get on, we worry about the ones who go too quiet, it's all about the balance again.
Love Helen

[Author]

Posts