tag:blogger.com,1999:blog-7107951278396437262.post4267674409878735308..comments2024-02-08T05:22:14.082-06:00Comments on Myeloma Hope: Plateau ContinuedDonhttp://www.blogger.com/profile/03923592545983795350noreply@blogger.comBlogger17125tag:blogger.com,1999:blog-7107951278396437262.post-73789402375347463872009-03-01T18:06:00.000-06:002009-03-01T18:06:00.000-06:00Hello Hans,Sorry for the late response and thank y...Hello Hans,<BR/><BR/>Sorry for the late response and thank you for sharing your supplement regimen. <BR/><BR/>My Sweetie just mentioned that perhaps I should mention <A HREF="http://bloodjournal.hematologylibrary.org/cgi/content/abstract/blood-2008-07-171389v1" REL="nofollow">this article</A> which warns against green tea when taking Velcade. It probably doesn't apply, and you probably know anyway, but there it is.<BR/><BR/>Thanks again, DonDonhttps://www.blogger.com/profile/03923592545983795350noreply@blogger.comtag:blogger.com,1999:blog-7107951278396437262.post-15324517586800429492009-02-27T15:28:00.000-06:002009-02-27T15:28:00.000-06:00BTW Phil,My calcium levels were good too, 10.2 mg/...BTW Phil,<BR/><BR/>My calcium levels were good too, 10.2 mg/dL, on the very day that the PET scan showed lesions in both scapulae and one vertebra. That's slightly high, but it had been higher before, and I do take calcium supplements which can bump the number up a couple of tenths.Donhttps://www.blogger.com/profile/03923592545983795350noreply@blogger.comtag:blogger.com,1999:blog-7107951278396437262.post-69514780512485891752009-02-27T15:20:00.000-06:002009-02-27T15:20:00.000-06:00Yes, I smoldered from July 2003 until March 2008, ...Yes, I smoldered from July 2003 until March 2008, when the PET scan showed involvement in three bones, not yet broken through. During that time M-Spike went from 0.52 up to 2.7, and bone-marrow biopsies went from less than 1% plasma cells up to more than 10%.<BR/><BR/>You are right - the treatment of choice for a newly-diagnosed patient in Stage I may have changed in the past year. Recent trials of three- and four-drug combos have shown a lot of promise, and your doctor may want to try one of those. Velcade is also approved for "front-line" therapy now, but wasn't then.<BR/><BR/>Do you have a support group near where you live? If you don't know, you can find out by calling the IMF hotline. You might benefit by talking to people who have had Rev/Dex or other therapies that your doctor could want to start you on.<BR/><BR/>That's what a "support group" really is - an information group. We discuss doctors, therapies, and results including side effects.<BR/><BR/>DonDonhttps://www.blogger.com/profile/03923592545983795350noreply@blogger.comtag:blogger.com,1999:blog-7107951278396437262.post-6540194212904997292009-02-27T15:01:00.000-06:002009-02-27T15:01:00.000-06:00Does this mean you were smoldering for 4-5 years? ...Does this mean you were smoldering for 4-5 years? I am not sure whether managing the disease with Dex and Rev will be the course of action given that I am 28; but I really don't know what to expect until I meet with Dr. J on Tuesday. Thanks for all your insights! I find them very helpful. Kickin' it! -PhilAnonymoushttps://www.blogger.com/profile/04782359902659250198noreply@blogger.comtag:blogger.com,1999:blog-7107951278396437262.post-70975998972153441442009-02-27T13:52:00.000-06:002009-02-27T13:52:00.000-06:00Yup it's hard to know, Phil. A year ago I was in ...Yup it's hard to know, Phil. A year ago I was in your situation, IgG about 3000 and M-Spike 2.7. I did NOT want to start Revlimid and dexamethasone. What settled the issue was the PET scan - I had to start. If PET is available, it WILL TELL you if there are bone lesions.<BR/><BR/>Otherwise perhaps I'd follow the advice of the oncologist, who has no doubt seen a lot of patients and can make the best guess.Donhttps://www.blogger.com/profile/03923592545983795350noreply@blogger.comtag:blogger.com,1999:blog-7107951278396437262.post-42011707865724252932009-02-27T13:17:00.000-06:002009-02-27T13:17:00.000-06:00Both my M-Spike and IgG have been on the rise sinc...Both my M-Spike and IgG have been on the rise since my diagnosis in August '08. It's so hard to know when you break the trend to lower this risk of bone or kidney injury. I guess a detailed scan beyond the standard x-ray would bring some clarity around potential compromises in the bone density. My M-Spike is now 2.9 and my IgG is ~3000. Also, the last four measurements have shown an increase in my Kappa light chain and a decrease in my lambda; which makes for a ratio that has consistently increased. Lastly, my IgA and IgM have consistently decreased, which is probably due to the rise of my IgG.Anonymoushttps://www.blogger.com/profile/04782359902659250198noreply@blogger.comtag:blogger.com,1999:blog-7107951278396437262.post-87582356958022015042009-02-27T00:57:00.000-06:002009-02-27T00:57:00.000-06:00Don,The supplements that I currently use are: Arab...Don,<BR/>The supplements that I currently use are: Arabinox, Coenzyme Q-10, Curcumin, Omega 3, Quercetin, Thymus concentrate, Chorella or Green magma, selenium, green tea, magnesium and multie vitamimes. There are still a few that I would investigate. <BR/><BR/>Hans <BR/>(Holland)Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-7107951278396437262.post-5282836986511346862009-02-26T19:40:00.000-06:002009-02-26T19:40:00.000-06:00Hi Phil,Unfortunately, we myelomiacs vary a lot. ...Hi Phil,<BR/>Unfortunately, we myelomiacs vary a lot. I know people with 50% plasma cells in their hip bones who have no symptoms.<BR/><BR/>The standard criteria is C.R.A.B. Calcium, Renal, Anemia, Bones. If calcium goes above the reference range, or kidney function (creatinine), or you are anemic, or there is bone injury, then you are on fire and not smoldering.<BR/><BR/>Otherwise, if CRAB is OK or seems so, we tend to watch M-Spike and IgG (or IgA) I suppose. My previous oncologist started to worry about me when M-Spike got 2.0. He thought it was time to start Revlimid to forestall bone damage, even if I didn't have CRAB symptoms. Turns out Mayo did a PET scan which showed I did have bone injury, so the point was moot. <BR/><BR/>But 2.0 is a mighty arbitrary figure. Higher for some folks, lower for others.Donhttps://www.blogger.com/profile/03923592545983795350noreply@blogger.comtag:blogger.com,1999:blog-7107951278396437262.post-35334946007450151682009-02-26T19:18:00.000-06:002009-02-26T19:18:00.000-06:00Hey Don,Do you have any insights on what numbers I...Hey Don,<BR/>Do you have any insights on what numbers I should really be focusing on as I march forward in a smoldering state? Obviously the M-Protein is important, but it's hard to find any information are stats on what is considered, "Oh crap, we better start zapping the suckers." I meet with my doctor on Tuesday so I am going to be asking him, but I was just curious what numbers you are most attentive to and what is considered really high or really low. The normal ranges are helpful, but it's hard to determine how abnormal my numbers are :)<BR/><BR/>Thanks! -Phil (http://mmfordummies.blogspot.com)Anonymoushttps://www.blogger.com/profile/04782359902659250198noreply@blogger.comtag:blogger.com,1999:blog-7107951278396437262.post-9197335423907418042009-02-26T11:10:00.000-06:002009-02-26T11:10:00.000-06:00My supplement regimen changes from time to time, a...My supplement regimen changes from time to time, as I try to find something that appears to make a real difference. It's always available from a link on the right panel, or <A HREF="http://minnesotadon.ms11.net/Supplement%20Matrix.htm" REL="nofollow">HERE</A>.<BR/><BR/>I don't know arabinoxylan, but a quick "google" suggests that it might help build CBC counts. It isn't a prescription drug but maybe should be.Donhttps://www.blogger.com/profile/03923592545983795350noreply@blogger.comtag:blogger.com,1999:blog-7107951278396437262.post-91979674533959543472009-02-26T10:26:00.000-06:002009-02-26T10:26:00.000-06:00Don, thanks for this information. I am interested ...Don, thanks for this information. I am interested in your supplement regimen (maby it can help me too, i have MM). Do you know arabinoxylan?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-7107951278396437262.post-18242980575036262342009-02-20T14:01:00.000-06:002009-02-20T14:01:00.000-06:00Thanks for your reply and explanation. This stuff...Thanks for your reply and explanation. This stuff can be so confusing! So many different terms and measurements! I'm happy to hear that you do not have "light chain disease". I don't much like what I read about it either. We don't get to choose though, do we? Thanks again and continued health and happiness to you, GailAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-7107951278396437262.post-37553652024050742842009-02-20T13:44:00.000-06:002009-02-20T13:44:00.000-06:00The printout from Mayo labs definitely shows Lambd...The printout from Mayo labs definitely shows Lambda Free Light Chains 2.78 mg/dL (not mg/L). Two possible explanations for the difference:<BR/><BR/>1. You are looking at lambda light chains from immunofixation measurements, not from freelite measurements. Mayo doesn't do that measurement for me, but when I went to an oncologist who did it, I got numbers that were generally somewhat higher than my IgG number, as high as 3720 mg/dL. I honestly don't know what it meant, except that the light chains measured by immunofixation are not "free" but are bound to other proteins. I think.<BR/><BR/>2. You have a "light chain" form of myeloma, different from mine. My original oncologist thought I had it and said I had "light chain disease," but when I asked Dr. L at Mayo about that she didn't recognize the term.Donhttps://www.blogger.com/profile/03923592545983795350noreply@blogger.comtag:blogger.com,1999:blog-7107951278396437262.post-40968635019400546312009-02-20T13:25:00.000-06:002009-02-20T13:25:00.000-06:00Just checking in to let you know how happy I am th...Just checking in to let you know how happy I am that you are doing so well! Keep up the good work! <BR/><BR/>One question, are you sure your Lambda free light chains are measured in mg/L rather than g/dL? If that's the case, I'm surprised I'm still walking around! Mine are measured in mg/L and are 891.34, waaay higher than yours! I probably shouldn't compare. (They have been as high as 1024.28!) Can you shed some light on this for me? I must admit I'm not as up on these things as I should be. Thanks, GailAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-7107951278396437262.post-63802516751864229802009-02-19T17:01:00.000-06:002009-02-19T17:01:00.000-06:00I feel I have learnt a lot from this posting thank...I feel I have learnt a lot from this posting thank you Don, your results are very positive - keep up the fabulous work.Susie Hemingwayhttps://www.blogger.com/profile/00936508273837230613noreply@blogger.comtag:blogger.com,1999:blog-7107951278396437262.post-78722410536464891962009-02-08T05:02:00.000-06:002009-02-08T05:02:00.000-06:00Congratulations, Don! Excellent results...I am ver...Congratulations, Don! Excellent results...I am very very happy for you!<BR/><BR/>I found your mention of breaking bones while on plateaus a bit unsettling. But, upon reflection, it's good to be aware that these things could happen. <BR/><BR/>Thanks! <BR/><BR/>Margaret<BR/>Florence, ItalyMargarethttps://www.blogger.com/profile/08311363647487982603noreply@blogger.comtag:blogger.com,1999:blog-7107951278396437262.post-20084055118597051082009-02-07T16:19:00.000-06:002009-02-07T16:19:00.000-06:00Whoa! Thanks for the insight on IGG & M-Spike....Whoa! Thanks for the insight on IGG & M-Spike. That's the best description I've heard and it clears a lot of the fogginess in my understanding.Johnhttps://www.blogger.com/profile/18309003459223482438noreply@blogger.com