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doubledd
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Posted: Fri Jun 27th, 2008 08:37 am |
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| My husband was diagnosed with MM in 2002. He underwent treatment with high dose deacdron and thalidomide which brought the levels down to 0. For the last 5 years life has been good. Last Aug.2007. his levels started climbing. We are now in a new treatment with Revlimed and decadron. Hoping for a great success rate as before. Anyone had success with refractory treatment lastin a long time for the better? Thanks for your input. doulbedd Last edited on Fri Jun 27th, 2008 08:37 am by doubledd
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suzy
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Posted: Mon Sep 22nd, 2008 04:32 am |
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| hi i just found this list, my father was diagnosed 5 years ago and it relpased after dex, thal, velcade and lastly revilmed...revlimed didnt work at all, i am not sure whats next to try?? how is your father doing?? i am interested to know what treatment he is on and whats working?
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doubledd
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Posted: Mon Sep 22nd, 2008 05:44 pm |
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My husband is on decadron and revlimid. Did your dad do a combo with decadron at all, this made all the difference.
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suzy
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Posted: Tue Sep 23rd, 2008 03:35 am |
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| yes he was on decodron with the revlimed..dex has been a major part of his treamtnet for the past 5 years..wondering whats next after revlimed once this stops working.
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suzy
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Posted: Tue Sep 23rd, 2008 03:38 am |
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| sounds like my father..the revlimed didnt really work after 4 cycles and pneumonia they stopped treatment in hopes to get him stronger ..im not sure whats next, he has an appointment Thursday to discuss some options and new drugs or clinical trials. My dad has needed more blood transufsions lately and he's very weak and tired, more so than ever. I hope Revlimed works for you, people tolerate all these drugs so differently. I hear great things about it, wishing it would've worked for my dad..
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doubledd
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Posted: Tue Sep 23rd, 2008 06:20 am |
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| my husband has only taken Thal/decadron and now Revlimid/decadron. The first 2 months his levels dropped dramatically, then they went up. We are continuing for a few more months to see if it evens out. Then I guess it is another combo, maybe velcade/decadron. It seems hit and miss as to which one will do the trick. How long has your dad has this disease? My husband is only 56 now. So he got it at 50. I hope you find some combo. There are alot of drugs, clinical trials still scare me though, not enough info yet... but you never know
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suzy
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Posted: Tue Sep 23rd, 2008 08:27 pm |
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| My dad is 78, diagnosed at 73. Did will on Thalidomide just bad peripheal Nerupathy (however u spell it!)..Hospitalized 3 times with Pneumonia and beat it every time, one time was really rough, he was hospitalized for 9 days, and took about 2 months to get his strength back after that..Still is pretty weak from this from March..He's a tough guy and was 100% healthy and strong before being diagnosed witht this monster. Velcade made him terrrrrrrriiiiiibbbbbbllllleeeeeeeeee, never sicker...hated that drug...He got soooo sick, and he didnt want to complain to the dr's so he got worse until the stopped the treatment.
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doubledd
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Posted: Wed Sep 24th, 2008 05:47 am |
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| Same here, my husband did well on Thalidomide/decadron, took it for one year and we were good for the next 5. This last year has been a real rollercoaster. Tried the same treatment but it just didn't work this time. So, I hope the Revlimid does because now I worry about the reaction to Velcade. My husband was very healthy before diagnosis, it was a complete and utter shock. Went in for a shoulder pain, was in surgery the next day for cancer!!! Do you know about the myeloma hotline? I have found them very helpful and knowledgeable. It is run by the Susi Novis foundation based in LA.
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doubledd
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Posted: Wed Sep 24th, 2008 05:47 am |
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| Same here, my husband did well on Thalidomide/decadron, took it for one year and we were good for the next 5. This last year has been a real rollercoaster. Tried the same treatment but it just didn't work this time. So, I hope the Revlimid does because now I worry about the reaction to Velcade. My husband was very healthy before diagnosis, it was a complete and utter shock. Went in for a shoulder pain, was in surgery the next day for cancer!!! Do you know about the myeloma hotline? I have found them very helpful and knowledgeable. It is run by the Susi Novis foundation based in LA.
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doubledd
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Posted: Mon Sep 29th, 2008 03:58 am |
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| Can you tell me what your dad's m protein count is from the urine? Dan's just doubled and I am curious to see what other counts are and if I should be as devasted and concerned as I am or just keep up the hope that there is another drug out there to help bring the count down. Thanks
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suzy
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Posted: Mon Sep 29th, 2008 10:40 pm |
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its 1400, doubled but it was 5300 when diganosed....
Its a concern when the numbers go up.
Have you looked into that center i posted about ??? the one in the Bahamas?
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DougC
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Posted: Tue Sep 30th, 2008 01:00 am |
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Hope you don't mind my stepping in, but what type of Myeloma are you talking about? I'm assuming you're referencing kappa light chains. Is your dad's m-protien (again, I'm assuming it's kappa flc) also being checked with serum flc assays? If his m-protien is kappa flc, 1400 is still within normal range for urine testing. It's my understanding the ratio becomes the important stat if both kappa and lambda flcs are within normal range. A rise in ratio can indicate active myeloma. However, that determination would be made based on evaluation of the entire picture of testing...to include imaging since other influencers can have an impact on flc numbers. My myeloma sub-category is lambda flc and if I'm wrong or you have a different take, I'd appreciate hearing it. The more knowledge about how to track this beast the better.
Thank you
Doug
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doubledd
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Posted: Tue Sep 30th, 2008 05:14 am |
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| Dan's is 1358, up from 700. That was a big jump because the Revlimid had brought it down from 2300. Sooo, I was disappointed in the results and wondering how long to continue this regimen before its decided this doesn't work either and we should try something else. I never got the website. I don't know how I missed it. Could you give it to me? Thanks
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doubledd
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Posted: Tue Sep 30th, 2008 05:20 am |
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| Thank you for your informative and kind response. For us, Dan's range went under 150 (which is considered normal) for almost 5 years, after being treated for 8 months. Then it started creeping up again. Since then, we went back on Thal/decadron for about 8 months with no luck, then the Revlimid brought the levels from 2300 to 700, now it is back up to 1358. Can't seem to get the combination of drugs just right. Would like to see it go down to below 150 again, but does it ever do that once you relapse? How long do you wait until you try something else in hopes that it works?
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suzy
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Posted: Tue Sep 30th, 2008 02:31 pm |
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http://www.immunemedicine.com/ I found out about this place while visiting my sister in NY. She was cat sitting for this woman who was in the bahamas being treated for Myeloma. Christine was diagnosed about 5 years ago at age 46 with MM and 8 months into her treatment she was in a wheel chair, couldnt walk and the chemo/steroids was making her really sick so she found this place in the bahamas..She goes there twice per year for maintenance for about a week. I met Christine, she had more energy than i do, (im 39 and healthy) she not only walks, she runs! and has no signs of MM. She does give herself a shot every hour on the hour for about 6 hours a day. This ITL Cancer Clinic treats all kinds of cancer. I BEG my father to try it, but he wont. So im just passing the info on..My dad is very old fashion, had a leading MM specialist treating him who is absolutely amazing and we are lucky he as this great dr. however i would try anything at this point, but he wont.
Maybe its worth looking into?
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doubledd
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Posted: Tue Sep 30th, 2008 05:48 pm |
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Thanks so much, who is your dr and where is it? I just want to check out all angles for the benefit of living longer and with qualityl. Thanks
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suzy
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Posted: Thu Oct 2nd, 2008 03:52 pm |
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| My dad is Jerome he is in Columbus..his doc is a leading specialist named Eric Kraut at the James Cancer Center at OSU. he knows all about leading treatments, clinical trials..every MM patient should be treated by an MM specialist, not just any oncologist. But check out the Bahamas place if u can, nothing to lose, i think for 2 weeks its like $3000 just to see if they respond to the treatment. if not, they dont get more sicker or anything..I SO wish my dad would try this...ugh
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