Paul, Jo, Terry, Mari & Amelie…
Thank you for your support. As usual, now that I know what I have to do I feel better equipped to deal with the disappointment and move on with as much fire and grace as I can muster.
This is a great board and I love it and all who frequent it muchly. 🙂
Dai.
Hi Bridget & Eve,
Thanks for your support… I have just arrived home from the hospital and a meeting with my consultant. She came down from her office, grabbed my file (big, bulging, with an easy to recognise tattered cover) and found an office. There she went through all the provisos and qualifiers for me to enter the 'Aspire' trial.
"Aspire' is being run and funded by Onyx (the manufacturing company responsible for Carfilzomib). The only possible fly in the ointment is that Onyx insist that there must be a definable amount of Myeloma in my urine… not a lot but definable. Because my relapse has been picked up by the FreeLight test it might not register yet; so….
My consultant has given me 2 sample bottles (3 Litres per bottle) for 24 hour urine tests. If the first one doesn't register the required amount she wants me to wait for 3 weeks and then try again. That means no treatment in the interim. She will keep me on weekly blood tests to monitor my relapse and will only put me onto the Rev/Dex combo if things look like getting out of hand. She says we have a window of opportunity because my relapse has been spotted so early and it is worth waiting if it means I get on the Carfilzomib trial.8-)
I agree, wholeheartedly.:-)
Of course, even if I do qualify, urine and all, the trial is still randomised 50/50… so I might end up on the Rev/Dex combo anyway… but in my opinion it is certainly worth the wait to see.;-)
[b]If there is anyone out there on the 'Aspire' trial (650 worldwide) I would like to know how you are getting on.[/b]
Regards
Dai.:-)
Hi Bridget,
The holiday's finished and you are back at work… fighting MM and surviving with all bells and whistles sounding… so here's to Bendamustine becoming your best-pal-at-work. With your courage and tenacity and Ben's ability to inhibit you have an excellent chance at knocking MM back. 😎
Please keep in touch and let us know how everything goes. Some of us are not far behind you… so you are our pathfinder as well as one of our bessie ever friends. 🙂
Dai.
Me too Tom.. constipation is often treated as a joke but there is nothing funny about being on the receiving end. I have had several problems with it, a couple severe and one where I was so extended (stomach) that I ended up in hospital… luckily I had taken 6 (six) Movicol solutions that day and I ended up pooing for Wales (8 Caps).
I t taught me a salutary lesson… and I take at least one Movicol (& other brand names) each day and if feeling iffy up to three a day. Better safe than sorry… because constipation types of sorry are just not worth it.:-P
I sincerely hope they get your Dad unblocked soon Nicola… and that the medics take steps to make sure he stays that way.:-)
Dai.
About time too… talk about dragging your feet. 😀
Well done to both of you… especially you Eve, you have fought tooth and nail to get to this point so enjoy every moment of the remission… as should Slim. 🙂 😎
Dai.
Hi Bridget and all.
Perhaps, like the new 'Life & Grief', there could be a 'Practical Support' section on the board. I see this section as a place for questions and advice on benefits (financial and practical) and general support issues.
I am sure that we could all benefit (excuse the pun) from the experiences of people like Bridget, people who have mostly gained experience from many hours of chasing, hounding and hunting down tidbits of information allied to financial and other 'benefits' that are due to us by right. Perhaps the answers to some of these questions, where there is general agreement that the information has been valuable, can be framed as permanent 'stickies'.
I too approached MacMilan and was grateful for their bursary… but I received advice on what to chase up, advice that I was told should be followed up immediately and relentlessly… which I did… only to be proven wrong and set me back months in trying for something of which the initial advice was plainly misinformation.
I think MacMillan is a wonderful organisation but their financial adviser cost me a lot of heartache and time… and a loss in confidence of their advice on financial matters.
So advice from our own, which has been proven, would be of great value to me and I am sure to a lot of others that frequent this board.8-)
Dai.
Hi Kay,
Good luck with the PET scan on Friday… here's hoping that there is no sign of active disease and that your PP's are just playing up a bit and will start settling down soon. As a light chain bod I don't fully appreciate the intricacies of PP's but while the trend is showing a steady increase the increases themselves do not seem very big… when I relapsed my first couple of readings were so-so but then started showing a big difference – I do hope my ignorance is your bliss and that your PP increase is not indicative of failure. Has the option of a maintenance therapy been discussed?
Regards and best wishes:-)
Dai.
Hi Ed,
Thank you for your open and honest post.
I am sorry that you have had the need to find us but given your circumstances I am glad that you have. The information highway has a lot of wrong turns and confusing roundabouts… this site and this forum should supply you with all that you need regarding information and empathetic experience.
For now I am just going to say hello and welcome… I am well down the road as a Myeloma patient… you have posted to the carer's section and most of your current queries are carer-centric and we have some excellent carer's here who are a mainstay of this forum. One of them will be along soon to add their welcome and perspective.
Regards to you, your wife (?) and child (?).
Dai.
Hi Eve,
My Birthday was on Xmas Eve and I spent most of the day out… the same for Xmas Day and Boxing Day. I enjoyed the first two but was glad to get home on Boxing Day… I had had enough.:-)
A big plus has been my appetite which is as good now as at any time since I first fell ill. I too have felt very tired since coming off Velcade and my sleeping patterns are shot to pieces… although I am trying to get them straight.
I thought that my PN would improve slowly since finishing treatment but no signs of easing as yet… my legs also feel particularly 'heavy' so I understand Slim's condition. I have also suffered from the sweats… sometimes having to change my top two or three times a day… somedays are good and some bad… there doesn't seem to be any rhyme or reason. I am trying to increase my fitness levels, very slowly, because the temptation to stay home and sit around is too easy to give in to. I have also been suffering with eczema… especially around the sweat glands on my face but Eumovate fixes that.
I honestly believe that 80% of my niggles stems from my PN… including the dodgy sleep patterns… I don't want to use sleeping tablets but they are the only way of getting a decent night's sleep… any suggestions on that score deeply appreciated. I should state that my PN problems increased by 50/60% during Velcade.:-)
Xmas has been good and although I enjoyed the festive family days I am really loving the past couple of days of Janet, treats and the TV.
Much love and best regards to Slim.
Dai.
Thank you all muchly xxx. I had a lovely day, didn't overdo it and as I am out for the next couple of days I am going to keep going at the same pace.8-) 🙂
Dai.
Just back from lunch at my daughter's… Janet cooked and we had a wonderful lunch in good company. Janet looks relaxed… a day off tomorrow as the other Gran is cooking Xmas dinner. As I write this I can hear Janet putting on the kettle and humming… she is happy… and looking forward to just the two of us until 12 noon tomorrow.
That it was ever so… but it is for now and for now I am grateful.
I genuinely feel that I am the luckiest man alive right here… right now. 🙂
Dai.
Like what everyone else said…
to everyone…
with knobs on.:-)
Dai.
I wish you a happy, love filled Xmas holiday David… put MM to the back of the agenda for a few days and relax.:-)
Dai.
I have noted that a lot of people with MM (here and elsewhere) have have problems with crushed vertebrae either at prognosis or shortly after… mine certainly started that way.
As for rib pain… I have had several gripes recently that semi-convinced me that my MM was back (after 8 weeks remission)… but.. as Janet noted… I have been sitting in a different chair with a different position and the pain normally coincides with long sessions in that chair (not noticed at other times/situations). I do know that I have extensive bone damage that will never repair… and that stresses, strains and postures can aggravate the damaged areas and cause cramps and pains Move, gently stretch and after a few minutes the pain disappears… so I do not believe that it is indicative of something evil lurking under my rib-cage. 🙂
Dai.
Hi David,
Allowing for senior moments (I will be 58 on Xmas Eve) my short term memory has been shot to pieces since the onset of MM. I have blamed the meds… after 3.5 years of daily morphine, plus the other kinds, both permanent and temporary, I feel mentally blunted. I struggle to recall names and facts which I find thoroughly frustrating and I have had to develop a mantra of 'Think IT, Do It'… otherwise there is a very good chance it won't get done. I ask Janet to remind me of appointments etc. but even so, I have seen and felt a definite deterioration in my short term memory.
Dai.
