tag:blogger.com,1999:blog-5398956932575790.post2694090699995827230..comments2024-01-23T21:37:27.869-08:00Comments on Nick's Myeloma Blog: Tandem transplants proven to create longer life expectancy!!!!Nickhttp://www.blogger.com/profile/09733312143898687572noreply@blogger.comBlogger14125tag:blogger.com,1999:blog-5398956932575790.post-63862725850311226422011-12-09T03:23:24.937-08:002011-12-09T03:23:24.937-08:00CANCER CARE<a href="http://myhealthcarezone.com/what-is-prostate-cancer.html" rel="nofollow"><br /> CANCER CARE</a>Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5398956932575790.post-35769827825543529102010-12-12T14:07:33.038-08:002010-12-12T14:07:33.038-08:00Pete, BB harvests stem cells only once. He does n...Pete, BB harvests stem cells only once. He does not believe there is a difference between harvesting after high-dose melphalan. Also, they tested irradiated stem cells versus those not treated with radiation and found no difference in residual cancer cells. Basically, consolidation and maintenance will take care of stragglers, is his point.Nickhttps://www.blogger.com/profile/09733312143898687572noreply@blogger.comtag:blogger.com,1999:blog-5398956932575790.post-3249766563005234142010-12-12T14:06:11.289-08:002010-12-12T14:06:11.289-08:00Dan, thank you! Your comments are an important c...Dan, thank you! Your comments are an important cautionary tale. As I have tried to mention here, BB's approach to low-risk, newly-diagnosed patients is one thing. I am less convinced that Total Therapy is the right approach for those who have been treated extensively elsewhere. As your experience attests, it can be a much more challenging situation and the carpet-bombing approach can do more harm than good.<br /><br />I wholeheartedly advise people to do their own research and should they go to Arkansas -- for whatever treatment -- they should ask BB directly the tough questions that I asked him (e.g. "why don't you put people in trials?" "what incidence of long-term marrow damage has there been?", I went through each induction drug with him and asked about incidence of the particular side effect, etc.) <br /><br />I am delighted to hear of your improvement and response to the mini-allo! Keep on keepin' on, my friend!Nickhttps://www.blogger.com/profile/09733312143898687572noreply@blogger.comtag:blogger.com,1999:blog-5398956932575790.post-88558755289349041552010-12-08T15:11:54.066-08:002010-12-08T15:11:54.066-08:00Nick,
Sorry about that. I think my post was too l...Nick,<br />Sorry about that. I think my post was too long and it got sent into cyberspace. So let me give the abbreviated version:<br />I was offered a tandem transplant in 2006, 3 months after my first transplant showed no response. I declined and went into a clinical trial with velcade. While I didn't achieve remission the velcade/dex worked well enough that I went on maintenance velcade/dex in 2007 for most of the year. My doc here in Denver often works with the myeloma docs at Dana Farber, MDAnderson and Mayo. They were all aware of BB's tandem transplant approach and did not think it crazy, but the data was not complete. The same is true for the maintenance regime. As noted, I was offered the tandem in 2006 and on maintenance in 2007. BB's statistics for treating initially diagnosed low risk patients with tandem transplants is very impressive. <br /><br />But there is a big BUT. There is no other similar population in any other institution with which to compare his stats. No one does the gene profiling studies so they don't have stats of that population. As you know, my experience at UAMS was quite different than yours--understanding that I had received extensive treatment for 4 years prior. There are significant risks with the very aggressive UAMS approach and you won't hear about them at UAMS and maybe not even from your own doc. But if you are one of the unfortunate ones for whom the approach doesn't work, any future treatment has been significantly compromised. After the failure of the aggressive treatment I received my only remaining option was an allo transplant. Fortunately my brother was a match and things are going well so far. I have to stop or this will apparently self delete.<br />My best to you and your family and I am very happy you continue to do so well.dan pattersonhttps://www.blogger.com/profile/01422820512237999017noreply@blogger.comtag:blogger.com,1999:blog-5398956932575790.post-88229819845260466132010-12-06T13:46:39.639-08:002010-12-06T13:46:39.639-08:00Did anyone notice that for the second transplant r...Did anyone notice that for the second transplant researchers used stems cell harvested after the first transplant. Does BB's current protocol use this approach?Pete Nhttps://www.blogger.com/profile/02753430737488217483noreply@blogger.comtag:blogger.com,1999:blog-5398956932575790.post-34125989916644672812010-12-01T21:38:37.813-08:002010-12-01T21:38:37.813-08:00Dan -
I absolutely did not delete your comment!!!...Dan -<br /><br />I absolutely did not delete your comment!!! Can you re-post it?<br /><br />Best,<br /><br />NickNickhttps://www.blogger.com/profile/09733312143898687572noreply@blogger.comtag:blogger.com,1999:blog-5398956932575790.post-48631789238452731202010-12-01T08:33:44.889-08:002010-12-01T08:33:44.889-08:00Wow Nick,
Did you really delete my comment?
DanWow Nick,<br />Did you really delete my comment?<br />Dandan pattersonhttps://www.blogger.com/profile/01422820512237999017noreply@blogger.comtag:blogger.com,1999:blog-5398956932575790.post-67619685860624669242010-12-01T05:02:56.182-08:002010-12-01T05:02:56.182-08:00Nick,
I am so happy to learn you are continuing to...Nick,<br />I am so happy to learn you are continuing to do so well, although I really had no doubt. YOur initial response to the first transplant was so good it bode well for you finding CR. Keep it up.<br />A few notes: Tandem transplants were discussed with me here in Denver as a possible option as early as 2006 after I had no response to my first transplant. I elected to go on a velcade trial, which brought my M protein down to .4, but not CR. A second transplant was discussed then but which I chose not to do. I then went on a maintenance dose of velcade in 2007. So these approaches were being used outside of AR well in advance of our meeting in Little Rock late in 2008.<br />You also know that I have strong disagreement with the Arkansas approach as it wasn't just not effective for me but it permanently harmed me in my view and forced me into my option of last resort: an allo transplant. Fortunately that is going quite well but I am far from out of the woods. Curiously, after receiving more chemo at Arkansas than anyone should be subjected to: VTD PACE for 5 days, followed by 14 days of 4 drugs (which I've forgotten) and then followed by BEAM Super Plus (9 high dose chemo drugs over 5 days) chemo regime before my transplant. My myeloma moved downward only for about a month then returned to its very high levels. The proposed approach after these failures was another round of VTD PACE. After consulting with doctors in Denver, at MD Anderson, and Mayo, and their analysis of all my treatment, and their actually brainstorming a treatment plan for me, the consensus recommendation was a single drug: revlimid (3 months of 15 mg. for 21 days, then 7 days off). That brought my plasma cell levels from 87% to 27%--something 9 high dose chemo drugs couldn't do. My conclusion is that a driven ambition to show the world that rigorous treatment is right can blind one to more effective much less damaging treatment alternatives. There is no doubt BB has been instrumental in moving MM toward a cure. But in my view there is a reason the AR approach is so controversial: poor outcomes often don't stay at AR, but move to a less aggressive approaches with different docs. Thus, these docs see more of the bad outcomes. My better judgment tells me to just shut up and mind my own business. But I guess I feel strongly enough after 5 1/2 years of dealing with an aggressive MM and consulting with the top docs at MDAnderson, Mayo, and Sloan Kettering as well as spending my requisite 4 months being treated in Little Rock, that AR is not the panacea. Some docs will actually talk with you about the pros and cons of their approach as well as the AR approach. In AR my experience was that there was no consideration of any other approach--only to continue to ramp up the chemo. I have said much more than I intended (perhaps its the steroids I'm on) but I would welcome further discussion off the blog.<br /><br />Best wishes to your family and my deepest wish for your continued good health.<br />Dandan pattersonhttps://www.blogger.com/profile/01422820512237999017noreply@blogger.comtag:blogger.com,1999:blog-5398956932575790.post-61269480532347296452010-11-27T18:53:44.700-08:002010-11-27T18:53:44.700-08:00Hi Nick,
Very exciting news ! I'll email you q...Hi Nick,<br />Very exciting news ! I'll email you questions off line and give you an update on Daryll :) Good to know you're doing well !Tamelahttps://www.blogger.com/profile/00779626436494796222noreply@blogger.comtag:blogger.com,1999:blog-5398956932575790.post-63920077652980479342010-11-26T07:32:06.030-08:002010-11-26T07:32:06.030-08:00Hi Nick-
Your readers can learn more about this Eu...Hi Nick-<br />Your readers can learn more about this European study by clicking on the Journal of Clinical Oncology link from last paragraph of The Myeloma Beacon's article. Interesting to note this is a tandem transplant study, not a TT study. Started before novel therapy agents were even available. One would think this is good news for survivors like you who have used new, state of the art induction and maintenance therapies. I will see if I can learn more when I am in Orlando at ASH next week- PatPat and Pattie Killingsworthhttps://www.blogger.com/profile/10341161973130207926noreply@blogger.comtag:blogger.com,1999:blog-5398956932575790.post-4708165088746978332010-11-25T09:52:52.339-08:002010-11-25T09:52:52.339-08:00Many other cancers, Breast Cancer, to name one, ar...Many other cancers, Breast Cancer, to name one, are on long term maintenance therapy after major medical intervention. It is a theory in cancer treatment. And like all things Myeloma it is being debated. <br /><br />While LR is doing a 3 year maintenance plan, many continue on something beyond that. My postulate, if you will, is that they learn new stuff during our 3 year maintenance that allows us to stop at some point. The vaccine research is quite hopeful in that regard. <br /><br />MM treatment is very fluid, with abundant interest in researching. We are lucky in that regard. CR only means it is at undetectable levels with the current testing diagnostics. The prevailing view is that it is still there in your body, thus the maintenance therapy with all the new drugs available. My husband has tolerated the maintenance therapy very well. Some discomfort, but manageable and tolerable. Its more getting over the emotional hump of having to "treat" regularly.<br /><br />This is very exciting news Nick. I remain hopeful!Lori Puentehttps://www.blogger.com/profile/11304096696996620733noreply@blogger.comtag:blogger.com,1999:blog-5398956932575790.post-67602883764129402682010-11-25T09:34:54.251-08:002010-11-25T09:34:54.251-08:00Hanna -
I am on maintenance for three years, cons...Hanna -<br /><br />I am on maintenance for three years, consisting of velcade, revlimid and dex. BB has been doing that for a long time (10 years at least, and this particular cocktail and cadence for about five years).<br /><br />Kathy is an extroardinary case. She has an identical twin, and was the recipient of a syngeneic transplant. This has the advantages of an allogeneic transplant (i.e. curative) without any disadvantages since the cells are perfectly matched. She will not say it because her mission loses urgency if people think there is a cure out there, but she herself is almost certainly cured.<br /><br />Maintenance is a breeze. I take 15mg of Revlimid 21 days on and 8 days off, plus 1.3mg/m2 of Velcade weekly, plus 12mg of Dex weekly (I can do without the dex, honestly, but I'm sticking with the girl I brought to the dance). :) <br /><br />You should be aware that BB's data shows that with Velcade, 4;14 translocation is no longer a negative diagnostic factor. Do a search on google for his presentation titled "The Myth of Incurability" (from 2008...things are even better now).<br /><br />If you have any questions, PLEASE email me at nvandyk1 at earthlink dot net.<br /><br />Happy Thanksgiving!!<br /><br />Best,<br /><br />NickNickhttps://www.blogger.com/profile/09733312143898687572noreply@blogger.comtag:blogger.com,1999:blog-5398956932575790.post-2012179695955560112010-11-25T08:22:54.378-08:002010-11-25T08:22:54.378-08:00Nick,
Thanks so much for this post. I have been ...Nick,<br /><br />Thanks so much for this post. I have been following your experience with great interest. While I only had 1 ASCT, we are saving my stem cells just in case. Traditionally T4;14 like myself did not have as good a remission period as others, so my onc is holding me in CR with 10 mg Revlimid.<br /><br />Nick, I'm still curious about one thing. There is so much data now that maintenance therapy is important and has great results. I know we are all unique and individual. For example, my MM was very aggressive and quite sneaky in it's ability to hide from blood/urine tests.<br /><br />Still, I have been trying to find out why Kathy G is no longer on maintenance therapy.<br /><br />Do you plan to be on maintenance? Do you happen to know why she has opted out of it, given so much supporting data?<br /><br />I'm a bit worried about doing this "for the rest of my life".<br /><br />Any insight is most welcome, on or off line.<br /><br />Thanks for this great post.Hanna Ostrowieckihttps://www.blogger.com/profile/08187481890900457483noreply@blogger.comtag:blogger.com,1999:blog-5398956932575790.post-49650258728229109202010-11-24T20:37:48.772-08:002010-11-24T20:37:48.772-08:00Great news! Looking forward to further substantiat...Great news! Looking forward to further substantiate their conclusions with a long, healthy life. Thanks, Nick!Sean Murrayhttps://www.blogger.com/profile/06954782169183374420noreply@blogger.com