Update one: the no-Ativan lifestyle does return some mental acuity and energy, even if I am still largely exhausted from time to time due to irregular sleep patterns. I took an Ambien on my last Dex night and got solid rest; I'm afraid to overdo it but one night a week is almost certainly harmless. I was less sluggish than I thought I would be, though a large cup of joe probably helped in that regard. I have never been a coffee drinker, but I must confess it did make a difference so I can see using it from time to time. The prevailing medical knowledge at this point in time is that it's good for you (this changes constantly, it seems) for what that's worth!
The finger continues to heal and it seems like it is getting better day by day, though last night Parker looked at it and said "THAT is what you call BETTER?" :) It's still pretty ugly looking...goopy and red. Looks like some skin is trying to form. It will be four weeks tomorrow and it's not looking like it's going to be healed any time soon. Additionally, the numbness in my thumb appears to extend to the forefinger (I have been brave enough to gingerly test for this) so that nerve impingement has yet to resolve. I sent a photo of the finger and note of the lingering impingement to the surgeon who dug the cancer out, and no response this time (last time he said no worries, looks good, etc.) so I assume it is steady as she goes. Will send him another picture in a few days' time.
After three years, have finally resolved to take Immodium with some regularity to attempt to establish some regularity. By which I mean much less frequency. I didn't want to put my GI tract in a tug of war between competing medicines but it's just become too much to deal with. I probably should have done this a while ago. I am just hoping things will return to normal when all these meds are done!
Lastly, I came across a very interesting article published in Haematologica, which is a European periodical. It's a study done by two Spanish doctors. It is notable because it says that 3-10% of autologous stemcell transplant patients can be considered to be operationally cured. This is in line with Arkansas' results from Total Therapy 2. Total Therapy 3 has been vastly more successful, and Arkansas claims cure rates in excess of 50%, and higher still for low-risk myeloma.
It's terrific to see another crack in the wall of the "incurability" facade...hopefully with more time and published data, more people will open their minds to the notion that aggressive treatment can cure this affliction.
http://www.haematologica.org/content/96/9/1246.full
I hope everyone had a reflective and happy Memorial Day!
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I'm new to the blogosphere and just found your blog!I received an allo transplant 13 yrs. ago for M.M. and have been in remission since. I still remember quite vividly my Ativan withdrawal days... I wasn't working at the time and just resigned myself to the fact that I would not sleep for awhile. After two weeks of very little sleep I recovered from my Ativan addiction. All these years later I am still a very light sleeper. Taking a benadryl at night helps a lot...A small price to pay for a long term remission. Thanks for sharing.
ReplyDeleteThank you for your post, Kathy! 13 years out -- that's fantastic! How have the side effects been from the Allo? Any GVHD? I'm so pleased you have done so well!!
ReplyDeleteMy Partner recently got diagnosed with MM, I found your blog through research I have been doing. I really feel strongly confident in Dr Barlogie's treatment, but we live in Pa and traveling to Arkansas is not possible for us. Do you know if anyone else also uses his approach and treatment? I have been looking more on he east coast but just can't find anything. thank you for any info you may have.
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