Glad to see there is now some info from this end, thank you Ellen 🙂
UAMS state that Morgan holds more than $10 million of research grant funding from various governmental and private philanthropic sources.
That is certainly a good amount of fuel & will undoubtedly enable him to put his worthy expertise toward the benefit of others.
Hi Karen
Three days into cycle 5 now & pleased to say theyve been amongst the best since treatment begun 🙂
I am however, still struggling with fluid retention so am very short of breath & cannot walk far at all. I was prescribed furosemide for this but had a very bad reaction after just one tablet. I discovered the next day that furosemide belongs to the group of sulphonomides, which I am hypersensative to & this is recorded on my medical records, so should not have been prescribed. Having COPD (Emphysemia) doesnt help either. Anti biotics course finished now, so shall have to see how things go from hereon.
Hope all goes well for you today
Ange xx
What an absolutely uplifting & inspiring thread !!!
I do hope that other newcomers like myself, whatever their age, manage to locate it & find it as rewarding as I have.
Enormous thanks to everyone who has contributed and of course my very best wishes go out to you all.
Ange
Hi Vicki
The steroids more often than not do provide a response & immediate relief of pain & inflamation whatever the cause, so until there is a much firmer diagnosis, please try to not worry too much. From what Colin has endured there could be a number of contributory factors to the inflamation & discomfort and I hope all turns out well. I'm sure you will both feel much better once he is finally home, so fingers tightly crossed for you both tomorrow.
Ange
In response to your earlier comment Chris, yes, yes, yes, your ramblings have been of enormous help to me, this has to be amongst one of the best threads that I have followed, so a BIG thank you & of course everyone else who has contributed too. I am so pleased that things have turned a corner & I look forward to more threads 🙂
Ange
When I had a brain hemorrhage back in 2005, I learnt that in addition to being a good provider of potassium, bananas are a great brain food too, and that certainly helped me to cope when my life was on the line back then too, so its bananas all the way for me again now. Fantastic news on your bloods Andy, especially the neuts & PP's, really pleased for you 🙂
Ange
Hi Stewart
I was diagnosed age 56 at the begining of August this year & like you opted for the Xl trial & was randomised for CDT. Just started cycle 5 & m protein now down from 43 to 11, so its good to see you progressing so well too 🙂 It is very hard on wives, husbands, partners & families, but there is endless support from really nice people on here and I hope that like me, you too will find that a huge bonus. Your lovely daughter Elsie will no doubt give you lots of encouragement & joy too 🙂 Like you say, it certainly is life changing, but like Vicki said it doesnt mean it can't be quality, so do be sure to remember that on the not so good days & keep your positivity flowing.
All the best
Ange
Hi Mike
I was diagnosed stage 3 in August this year after several years of back pain & then repeated chest infections throught 2011 resulting in pnuemonia in December. Things gradually got worse from then on, rib pain begun during May/June and although the August diagnosis was one that I would have much preferred not to have had, it was a huge relief to at least have one & for treatment to commence. I have just started cycle 5 of CDT on the Myeloma Xl trial so same treatment and not far behind you 🙂 My M proteins are now down from 43% to 11% so hopefully a SCT for me too soon. I have had a DVT that resulted in a PE & while I appreciate that you have gout to contend with, like Eve said its better to be safe than sorry. Are your injections Heparin ? If so that should provide some protection for you against DVt's. Everyone on here are so very supportive & uplifting and although there will be both good and bad days, its really good to see you so positive, which really does help, so do keep it up.
All the very best
Ange
I am in full agreement that a positive attitude & outlook is important & extremely beneficial and this is something that comes with time following a diagnosis.
However, with regard to feeling down and utterly depressed, which can be as a result of many factors for each individual, I disagree entirely that it is a matter of "choice". While it is perhaps nothing to do with "the rest of us", our support will no doubt be beneficial & appreciated by those who choose to share their experiences and I would encourage all who feel comfortable with sharing to do so.
http://www.allaboutdepression.com/cau_02.html
http://www.mayoclinic.com/health/pain-and-depression/AN01449
Hi Karen
Thalidomide (as with dex withdrawel) can cause tremors & as your dose has been increased (normal procedure under the CDT arm of the Xl trial), I suspect it could be the culprit, or at least a contributor & I would definitely mention this to your consultant, who may then decide to revert your dose back to 2 capsules.
Bamboozled, thats a new one on me 🙂 Myeloma cells produce and release monoclonal proteins into the blood & urine. Monoclonal proteins are referred to as either, M-protein, Para protein or M spike. When the level of monoclonal proteins decrease, it is a good indicator that treatment is effective by inactivation, or destruction of the myeloma cells.
Looks like we are in for some bad weather, but hope you have a good weekend.
Ange
Hi Karen
Another newcomer here, I am 56 & having had symptoms for the last couple of years, I too was eventually diagnosed in August & my initial treatment is also under the CDT arm of the Myeloma Xl trial.
LgG Lamba MM was confirmed when various tests revealed anemia, renal failure, bone lesions to upper legs, hips, ribs (1 fractured) & skull, with bone marrow at 60% & M-protein (Paraprotein) 43%.
My treatment was discontinued for the last 2 weeks of October while I was in hospital with pneumonia, so I am a cycle behind you & due to start round 5 in the morning.
Apart from providing relief of pain in my ribs, I have not tollerated the dexamethasone very well at all, it caused fluid retention throughout my body, which in addition to other problems not only contributed to DVT & a PE, but also affected my mental & emotional wellbeing considerably, so I can fully relate to the dark moods and depression that you are experiencing and especially so during the days off dex. I too have noticed a deterioration in my eyesight, perhaps due to MM being constantly on my mind resulting in a lot of online reading.
Since having pneumonia the dex & thalidomide dosages were decreased by 50% & I found the side effects were less severe during the last cycle. Dex has been reduced further for cycle 5, so despite having another chest infection requiring more anti biotics at the moment, I look forward to (hope for) an easier time with less tremors, shortness of breath, mushy brain & wobblys (all as you have mentioned) from here on.
I was expecting the halting of ttreatment while hospitalised & the recent dose reductions to affect M-protein levels, but so far the results continue to show promise: Cycle 1-38%, Cycle 2-29%, Cycle 3-16% & after 2 weeks off with just one week into Cycle 4-11%.
My consultant at Derby Royal is hoping that we shall see 4% in the near future (fingers crossed) & then all being well I too shall have the potential for a SCT at Nottingham City Hospital. The shared experiences & good reports from others about the facilies & level of care there are reassuring & much appreciated 🙂
Hope all continues to go well with your treatment & the MRI Karen, do keep in touch.
Very best wishes
Ange
Edited as posted in the wrong place :-/
