[GrayhamParticipant]

Hi Megsn……….. hope Phil is improving………

The MRI… phil is not alone here….. it is a mind game and most of us hit the panic button eventually. I refused to have a second one so they agreed to sedate me, marginally… and it worked a treat. Part of my reluctance was that it was too painful(at the time) to lie on my back and the other was the "closeness" of it all…. scary.

So… try for a sedation if it crops up again??

Oooops….. just read some more of the thread….. congrats at being ay home…. great news… well done.

Regards

Grayham

[GrayhamParticipant]

Hi Sal…………. thank you for your story.
I am so sorry for your loss………. my thoughts are with you and yours..

Best regards

Grayham

[GrayhamParticipant]

Gosh guys……. I'm trying, not too successfully, to link my replies into your replies, but they seem to be going everywhere but to the right place:-D
Not even sure where this one will end up either:-D

Hopefully I'm catching up with my personal responses and hope I don't miss any of you.
I really appreciate your time and effort here. My Sister (South Africa) and brother(Las Vegas) read this thread as well and it keeps them in the picture as well…. so thank you all.

Talk soon

Grayham

[GrayhamParticipant]

Hi Gill….

[b]YOU ARE A ROCK……… THANK YOU SO MUCH[/b]

(a shouted from the rooftops type of voice)

Grayham

[GrayhamParticipant]

Hi [b]HelenR[/b]…… thanks for your story and support. I had to backtrack on the PADIMAC trials that you spoke of….. but need to say thanks here because I am now the recipient of the drug (Valcade) you trialled and it has worked very well for me. So many of you have said to ignore the results that get posted from time to time and as I read more and more of the successes I see this as sound advice…. thank you.

Yes, lots of reading to do, but no pressure from my Haemalologist…. He is a bright young man and one of the best on this big island.

Thanks Helen……

Talk again I hope

Grayham

[GrayhamParticipant]

Hi [b]Jean[/b]……… thank you for your story. You didn't mention your husbands name but I hope he is over his cold, and his "bloody-mindedness" about the treatment…. you have come so far in this journey, you have to keep going….. if nothing else, we owe to those who are with us every step of the way – their love and support and their belief in us to beat this thing.
I hope your next posting is full of positive vibes and good news that will help me in my journey forward….. your strength becomes my strength.

My best to you both
Grayham

[GrayhamParticipant]

Hi Michele………. thanks so much for your story and support. I too live in Perth, in Duncraig…. about three suburbs south of Sorrento and not far from the Swan Valley.

Wow!, you were lucky with them picking up your MM so early. They have suggested that mine could have been with me for years (even from my teens)as I've always had ankle/big toe issues which I put down to many hockey injuries… these areas were certainly highlighted throughout the various Xrays/scans I've had. It's pretty much a "go figure" kind of disease… no-one seems to have the same symptoms or treatment??

Yes, I've got phase 2 to read up on and decisions to make…. hopefully with the input from this lovely [b]UK team[/b].
With private health insurance I can choose my medical team so I'm being treated at the Hollywood Day Clinic in the city.

We'll talk soon

Grayham

[GrayhamParticipant]

[b]Hi Megan[/b]………. thank so much for your story….. I'm pleased that Phil is on the mend, slow as it is. The PADIMAC trial obviously went well over there because I appear to be one of the first Australians to have the drug over here, and am responding well to it. I have Chemo in the day clinic every Tuesday for 30 minutes, and 3 out of 4 treatments is with Valcade. My specialist has said that I've responded well and that there is no rush to move on to phase two of my treatment…. I am currently booked into the day clinic for 2 more months………..
I hope you keep us informed of Phil's progress…..

Thanks for sharing

Grayham

[GrayhamParticipant]

Hi [i][b]Megan, Jean,Tom, Andy, Tom (again)Eve and Gill[/b][/i]……….. you guys are amazing and I thank you for your upbeat approach to all of this…… your encouragement is awesome and I will get to writing to each and every one of you soon…….. gotta get some sleep first.

Grayham

[GrayhamParticipant]

Hi Vikki and Colin……….. thanks for your reply (got my picture up now).
I think that treatment seems to differ from Dr. to Dr. as I am still on a weekly Chemo course of 30min transfusion of Velcade and Cyclophosphamide that has been going on now for 3 months and is sceduled for 2 – 3 more. I then have two options to consider…. either the paraprotein/ lightchain route for a while, resulting (eventually) in the stemcell/chemo bash OR go straight for the latter. Oncologist has given me some reading material on both processes…. saying its my choice. My partner Louise is currently working her way throught it all.
Thanks for your history… and its still scary…. and your strength and support….. its a lot for me to get my mind around…. especially when talk is made of "give him another 4 years or so, maybe". I still have a lot of living to do… smiles. Anyway I'll get the litrature from Louise and then I hopefully can pick your brains a little more… I'll also get Louise linked in here as well.
Thanks again and talk soon

Grayham

[Author]

Posts