tag:blogger.com,1999:blog-5123456984059720316.post4549135674226540992..comments2023-10-17T07:38:00.727-07:00Comments on Kevin and Barbie -- Our Journey of Hope: Hard Questions -- Good Questionskevinandbarbiehttp://www.blogger.com/profile/04634011893927790997noreply@blogger.comBlogger5125tag:blogger.com,1999:blog-5123456984059720316.post-82801624770561102182013-07-03T14:39:08.468-07:002013-07-03T14:39:08.468-07:00Kevin, It is certainly a challenge to figure out ...Kevin, It is certainly a challenge to figure out whether to continue on chemo, or not. Even for someone as smart, and a medical doctor, as yourself. Rich chose not to take chemo because he always felt so terrible while on the stuff. He just had too many things he wanted to do and didn't want to feel sick trying to do them. Maybe that was not the best choice, because as you know, he passed away because of his primary amyloidosis. But he lived ten years after his stem cell transplant, and he lived well, doing the things he wanted. I think if there was one thing he would have done differently was the massive treatments towards the end of his life. In hindsight, he would have preferred to not go through all of that, at huge expense both to his physical body, and the financial expense. It would be great if there was a sure path to follow. But, unfortunately, these hard decisions are made by individuals who can only hope for the best.<br />Happy you're back on your blog. I missed you, ElleAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-5123456984059720316.post-79638022236743377632013-06-29T09:13:52.581-07:002013-06-29T09:13:52.581-07:00My son was just told a week ago that he has had n...My son was just told a week ago that he has had no response from his chemo of velcade/Cytoxan/dex in the last 5 months The doctor now wants to increase the dosage on all and add revlimid Of course my son is very depressed so much so he has declined chemo the last 2 weeks that has my stress levels at an all time high I have RA and have just been diagnosed with scleroderma so you can imagine I don't need the added stress It doesn't look like he is going to be able to qualify for a SCT anywhere in the near future either due to his heart involvement and his MM<br /><br />, Moffitt cancer center won't consider an SCT until he has a BNP of 1800 his is 3750 right nowMistyhttps://www.blogger.com/profile/12422203658722211977noreply@blogger.comtag:blogger.com,1999:blog-5123456984059720316.post-56098797384562664112013-06-05T09:25:00.586-07:002013-06-05T09:25:00.586-07:00Hello Kevin,
I had the same questions on my Multip...Hello Kevin,<br />I had the same questions on my Multiple Myloma. I had thought about how melfalin might not be equally effective at all stages of the cell cycle, resulting in cancer cells that survive through the stem cell transplant. <br /><br />I was one of those who conned my doctor into continuing Revilimid at a reduced doseage as a maintenance drug, and it had a suprising effect. My light chain level dropped into normal range a month or so after I went off the Revilimid, and stayed low for about 300 days and then slowly started to climb roughly 5% per month. Prior to the onset of the Rev treatment, it had risen at about 33% per month. I have been off allanticancer drugs for 736 days.<br />I still keep my fingers crossed each blood draw, as does Donna L. Ed Krugnoreply@blogger.comtag:blogger.com,1999:blog-5123456984059720316.post-53933963583497296002013-05-23T07:31:47.466-07:002013-05-23T07:31:47.466-07:00Knowing the patient; becoming an advocate for the ...Knowing the patient; becoming an advocate for the patient. This is what each patient needs.kevinandbarbiehttps://www.blogger.com/profile/04634011893927790997noreply@blogger.comtag:blogger.com,1999:blog-5123456984059720316.post-57817259143561363912013-05-23T04:44:04.949-07:002013-05-23T04:44:04.949-07:00Most of the Mayo amyloidosis hematologists (about ...Most of the Mayo amyloidosis hematologists (about a dozen) have been guests at our support meetings in over 20 cities (as have BU and others). We hear over and over from these doctors that the Free Light Chains are a great tool as are the other biomarkers but knowing the patient is the most important factor and treating the patient and not the numbers are key.<br />M<br />ASG<br />www.amyloidosissupport.comMurielhttp://www.amyloidosissupport.comnoreply@blogger.com