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KathyK
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Posted: Thu Oct 18th, 2007 09:14 pm |
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HI!
My name is Kathy Kupka. I’m 57 years old, and was diagnosed with Multiple Myeloma in April 2001, and have been in remission for five and a half years! I am married, and have two children, and three grandchildren. I have my own photography business, called Kids in Focus, specializing in child and dog photography. I also have my own line of doggy greeting cards called Buddie’s Balloon Buddies.
I'll try to make a long story short!
I broke my collarbone after lifting my 17 lb. dog, Buddie, in April 2001. Before that I was complaining for a couple of months about bad pains in my back. I went to my family doctor, he told me to "stretch more" before I exercised. Then a couple of days later, I brought my dog, Buddie, downstairs to distract a little boy during a photo session, and when I leaned over to pick Buddie up, I felt a bad pain in my collarbone, then after my clients left, I leaned over to put something in the trash, and I heard a snap in my collarbone. I went back to my family doctor, he actually looked annoyed, and said “you were just here,” and he gave me a painkiller and told me to stretch more before I exercised! I never went to him again.
My sister, Mary Kay, took me to her orthopedic surgeon, he took an x-ray and saw my fractured collarbone, but he also saw a lesion next to it, next thing I knew I was sent to see an oncologist. I met my first "Saint," Dr. Rajendra. He scheduled many tests, and, after what I call an electrocution (bone marrow biopsy), I was diagnosed with Multiple Myeloma. I never heard of it (my one friend said, thank God it's not cancer!). I think Dr. Raj. would have treated me here, but I asked him where the experts were, and he said well, I would have suggested the hospitals in Washington and Baltimore years ago, but the doctors who worked there are now in Little Rock, Arkansas. The only thing I ever knew about Little Rock was Bill Clinton!
I went to Little Rock for a one-week evaluation. That is where I met my second, “Saint,” Dr. Guido Tricot (he now runs the myeloma program at Huntsman Cancer Institute in Salt Lake City, so I go there for my treatment these days.)
I told my family that my new doctor looked like Bill Gates, but when my sisters met him, they all said he looked like a blond Rich (my husband).
I was randomized to be on Thalidomide as part of my Protocol. (A friend of mine was not randomized for Thalidomide, and after her two transplants is doing just as well as I am - knocking on wood). I was also on Dexamethasone - my family used to want to leave town when I was on it! I would be flying for days, then crash, and snap at everyone for the next four days!
I was on Dex and had two sessions of Chemo before I went to Little Rock for a month for my collection (of stem cells). I will admit this is when I was my sickest. The way I explained how I felt was like one of the worst flus I ever had, but then all of a sudden, I started feeling better.
I had my collection in September 2001 (was there during 9/11); my first transplant November 2001, and my second one in February 2002 - I went into remission before my second transplant.
I started with 800 mg of Thalidomide in the beginning. I always fell asleep before my head hit the pillow. I do have neuropathy in my feet so Dr. Tricot eventually over the years cut my dosage down to 50 mg twice a week.
My biggest problem was infections. I ended up in the hospital with pneumonia about four times over the next two years after my transplants. (The dex also suppresses your immune system.) But, I have friends who have gone through the same treatment as me, and never had problems with pneumonia.
I never completely stopped working, but had to slow down a lot, but now I have more energy than ever and feel great!
Also, I never felt like I was "electrocuted" again during a bone marrow biopsy because the techs at the clinics do so many biopsies a day.
I send my blood to Dr. Tricot every month, and see him every six months for check-ups. As of my last visit with him in September in Salt Lake City, I’m still in complete remission!
But, there is a twist to this story. Last year, I saw Dr. Tricot a lot more because…..
My husband was diagnosed with recurring Hodgkins’ Lymphoma last year, and Dr. Rajendra said that he wanted to treat it aggressively with a stem cell transplant, so Rich asked if he could also go to the expert, Dr. Tricot, for treatment. Rich had his transplant in January and is in complete remission and doing very well too.
A friend of mine said, I think, in jest, that she was going to stop praying to God and start praying to Dr. Tricot!
My motto has become: Eat, Drink & Be Merry!
Kathy Kupka
PS - Below is one of my Buddie's Balloon Buddies cards. If you'd like to see more of them, or like to order any, please check my website, and click on Buddie's Balloon Buddies.
http://www.kathykupka.comAttachment: MadisonRemissionSLC.jpg (Downloaded 132 times)
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DougC
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Posted: Sun Jun 8th, 2008 07:59 pm |
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| I come back to your story often...it's inspiring to me and offers hope of long term remission. Thank you for sharing Kathy. I hope all of us experience equal success with our treatments. Best to you and your husband.
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confusedmarcie
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Posted: Mon Jul 7th, 2008 11:31 am |
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| I just read your story today and it makes me feel hopeful for my dad. He is 63 and just diagnosed last week and up until now have never heard of this disease. I researched the net to get as much information as possiable to help me bacome familiar with this illness and I start to getting tears in my eyes and more confused and sad.
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Annick
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Posted: Mon Jul 7th, 2008 06:40 pm |
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Hi Marcie,
Please let us know if you have any questions related to myeloma, or if there is something else we can do to help you and your father. In the hands of a skilled physician and with the right treatment, the outlook for your father is not nearly as grim as a lot of the information out there may lead you to believe. A great many of our patients are a testament to that. Best wishes to you and your father.
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doubledd
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Posted: Mon Sep 29th, 2008 04:18 am |
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| My husband was diagnosed in 2001. We have received excellent care at Kaiser, Roseville, he was on thalidomide and decadron for 1 year and we were good until last year. His levels started climbing and we went back on the same regiment for 8 months with no success. He has received 4 treatments of Revlimid and decadron. The first 2 treatments his level went down and the last 2 have gone up. He has the light chain bence jones protein shows up in his urine. His count was 1358 as of yesterday. I just don't know where to turn. Kaiser at one point had said he was a candidate for transplant at Stanford, but said to wait since the drugs were working. But now I don't know what to think? We have a family and would give anything for time. Please let me know if I should pursue other avenues, be more assertive with our oncologist. He treats other cancers as well as mm. We really have been please with everything so far, but feel we sort of got pushed away from transplant. Thanks,
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DougC
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Posted: Tue Sep 30th, 2008 01:25 am |
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If I may jump in again, I'd suggest reading Dr. Tricot's letter to patients.
http://www.huntsmancancer.org/groups/myeloma/messageFromDirector.html
I also have light chain myeloma (lambda). My lambda flc count was 1478 (1.5mg) when dx. There are basically two schools of thought...from what I can tell. One is aggressive, the other is the wait and see, treat it as it comes, rely on novel drugs/agents first, older chemo combinations as needed. The ONLY school with long term data to support its schema is the aggressive (tandem transplant)...in my opinion. I chose the more aggressive option offered at the Huntsman under the watch of Dr. Tricot and Dr. Zangari. I had the two transplants and I'm now doing maintenance. As far as I know, I'm still in complete remission. My Lambda flc is <.16mg using the serum flc assay...I believe to be a much better testing foundation than 24hr urine collection alone.
I'm 47 and too young to give in to this beast...and my family wouldn't have it any other way. I chose to swing the biggest stick I could and have no regrets....not to mention my wife, daughter, and son wouldn't let me quit. As a minimum, I suggest researching both schools of thought and the clinics that offer them. As far as I know, the Huntsman and Arkansas are at the front of the pact for the tandem transplant aggressive approach. Since Drs Tricot and Zangari both came from Arkansas last Aug, I believe they've brought a more refined approach (meaning, the best of what Arkansas offers with the added knowledge of years of research conducted at major institutions around the world by Tricot and Zangari).
If you need a real boost, read this article. It knocks all those doom and gloom statistics you read about out of the ball park.
“With these new clinical trials, combined with the 19 years of patient data, we believe we can quit saying ‘myeloma is incurable,’” said Bart Barlogie, M.D., Ph.D., director of the Myeloma Institute (Arkansas)
http://www.uams.edu/update/absolutenm/templates/myeloma/myel
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jazzmom
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Posted: Tue Oct 7th, 2008 07:12 pm |
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To Doug C, I have been curious about how you actually felt while undergoing all the treatment. How long did you take just medicine before getting your transplant? What guideline did you have to meet to be a candidate for the transplant? Did you feel great? Did you feel crappy? The medicine seems to make my mother (63) feel crappy, but so does the myeloma? From dx to first transplant timeline? What was your numbers when diagnosed and when first transplant? They keep telling us that though mom numbers seem better, she is far from feeling well enought to get transplant? Perhaps she will never feel well enough we fear? From walking, golfing, working 2 years ago, to barely able to get around? This disease and the treatment leaves us so unsure as to whether we are making any headway at all.
Kathy, I am so thrilled for you. I would like to get mom to where you are. We would be so grateful for any additional time we coud get. I am urging mom to go to Huntsman/Dr. Tricot NOW, but her doctor here wants us to wait one more month to see if the Thal/Dex will do anymore to stop the MM. He says she is just not feeling well enought yet to see Dr. Tricot and proceed with the transplant, but hopes soon. I feel alot like "doubledd" that we are pushed away from the transplant. When I bring it up, I get the feeling that they just don't feel it will ever be a possibility, but don't want me to give up hope. Perhaps they don't think we have much time, but don't want to tell us that?
Last edited on Tue Oct 7th, 2008 07:21 pm by jazzmom
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DougC
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Posted: Wed Oct 8th, 2008 03:15 am |
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Jazzmom: Once it was determined that I had MM, I went straight to the Huntsman and began treatment under Dr. Tricot. I didn't take any medicine prior. The treatment I received consisted of three different cocktails of high dose chemo. One cocktail (D-PACE) didn't bother me at all. D-PACE is used for stem cell harvest, consolidation, and other situations as determined by the doctor. I had three rounds of D-PACE. Most other patients I've talked with handled D-PACE very well. As for the other two cocktails used for the two transplants, I feel I did very well. I had nausea in the sense that I often didn't feel like eating and lost my taste for food, but that's about it. I may have vomited 5 times total throughout the entire treatment plan. I'd say I felt cruddy, but not violently ill. I was dx Nov 07 and completed consolidation Sept 08. However, each patient progresses through the treatment at different rates. I had a tumor that had to be taken care of first. Some have other issues that cause the timelines to vary a bit. My lambda flc count was 1478 (1.5mg) when dx. Everything else was in normal range except for the imaging. I had many lesions and a tumor. As for the transplant, I think your mother's doctor (onco) is misguided and has a false pretense about what exactly a transplant involves and fails to recognize that Dr. Tricot has been doing tandem transplants for many many years. I'm confident Dr. Tricot is not going to subject a patient to more treatment than he feels the patient can handle. The word transplant is more scary than the procedure itself...looking back from where I've been to where I am, I feel I can say that. If you spent one day at the Huntsman just observing the myeloma patients, you'd see your mother isn't that much different than many who are being treated there. Read the message thread "first time in the barrel"...I documented my treatment there. Also, Doug M talks about his treatment and how he felt/feels now.
I wouldn't let your mother's doctor or the 4hr trip stop me from taking her to the Huntsman for a consultation. In my opinion, your mother isn't going to feel better until she takes the fight to the MM and starts killing large numbers of the MM cells.
Best of luck
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dpcaregiver
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Posted: Mon Dec 22nd, 2008 02:48 am |
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Hi Marci
just stumbled on to your blog. My husband is 61 and was just diagnosed on 10/23/08. I was wondering how your dad was doing. It is such a scary disease, but I have been reading more and more 'positive' blogs with people on remission and doing well. Being only the caretaker, I am not going thru the actual treatment, but when you care about someone it is so very difficult to see them in pain or being sick and feeling crumby. All we can do is take this one day at a time. They keep telling us to keep life as normal as possible, but they call and make our appointments so it's kind of hard to make a work schedule if we never know what they are going to do with us next week. Good thing we are semi retired. Please let me know how your father is doing when you get a chance. We hope to start DPace on Jan 5, 09.
denese
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doubledd
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Posted: Mon Jan 19th, 2009 02:01 am |
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| Dear Kathy, I have written a few times to the blog, but now things have really taken a turn. My husband was diagnosed in 2002, completed treatment for 8 mos. on Thal/ dex. Was good for 5 years and now we have been in relapse for 1 and 1/2 years. First, we went back to Thal/Dex for 8 mos, then switched to Revlimid for 3 mos. then tried Velcade alone for 2 mos. At first the numbers went from 5000 to 240 with the Velcade, but now they have shot up to 2200 again. The dr. is recommending Chemo. I read that you received Chemo and wondered how is that different than what we have been doing. What kind of drugs are involved with this? Is it possible to go to a combo with the Velcade instead of directly to the Chemo? As I understood, the above drugs were a form of Chemo as well. Please let me know what you think. We are devasted as to where to turn. He is only 56 years old and we wish for more time. Thank you so much for your encouraging story. We hope to be successful as well. Thank you. dea or doulbledd
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dpcaregiver
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Posted: Mon Jan 19th, 2009 02:42 am |
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| Has your husband had a stem cell transplant yet?
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doubledd
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Posted: Mon Jan 19th, 2009 03:45 am |
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| No, I have tried to discuss this with the dr. and he keeps saying it isn't quite time. From the research I had gathered, I suggested with harvest cells a few months ago just in case we wanted that option available. He is in good health otherwise and all the other tests come back pretty good. I even went to far as to make the initial appt. with Stanford ( that is the hospital connected to Kaiser) got in, but Dr. didn't approve the consult so I had to cancel. This week, however, when we meet with our Dr. many questions will be raised as to options and how to proceed from here for the most successful outcome. Do you think transplant is key, I have read both pros and cons as far as survival rate. Let me know your thoughts. Thank you so much. dea or doubledd
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dpcaregiver
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Posted: Mon Jan 19th, 2009 03:25 pm |
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Obviously, my husband and I think stem cell (we are going for the TANDEM) transplant is the key. We too researched tons of stuff on the net. When you get info there be sure to check the date it was posted. So much 'older' stuff doesn't touch on stem cell as it simply was an unknown and gives much lower and dyer prognosis. I've talked to quite a few people that have gone through the stem cell (i.e.blogs and email) and yea, it isn't a pleasant process, but from what we are currently experiencing ourselves, at least we have an actual plan of attack that has a starting date and a timeframe as to what is going to happen when. The SICK part of the stem cell transplant (SCT) isn't much different than any chemo treatment so there will be that anyway. I encourage you to contact Huntsman (even if you didn't go there) they have great information and the chat moderator could certainly answer some of your 'medical' questoins. Annick is amazingly good at responding fast and she takes any medical questions directly to Dr. Tricot (the main MM man at Huntsman). I made some comments a few weeks ago and, within 5 hours had a response and a phone call from our personal coordinator at the clinic. They are so amazing and our 'team' sticks with us for the entire treatment. We don't change nurses or PAs, etc.
In our research, tand our opinion, he SCT route seems to be the ONLY long term (10 + years) available as well as quality of life. All the others have a much less median survival rate.
dpcaregiver
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Annick
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Posted: Mon Jan 19th, 2009 07:20 pm |
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Dear doubledd,
Yes, Huntsman believes strongly that transplantation is key, and that it's not sufficient just to do one transplant but to do two within a period of 6 months or less followed by a 2 year maintenance period. The treatment regimens that your husband has been treated with are not strong enough to truly wipe out the myeloma, which is why he's experienced a number of temporary successes followed by an increase in his markers.
There are still many oncologists that presume incorrectly that transplantation should be the treatment of last resort, and unfortunately, patients who have been given that advice and only come to transplant after they're resistant to all other therapies do not benefit from the maximal anti-myeloma effect that transplantation has to offer because by that time, the myeloma cells have become highly resistant to all treatment. (Think of it as analogous to being treated for an infection with the wrong antibiotics, which over time cultivates the drug-resistant "superbugs" that I'm sure you've heard about.)
Your husband is still very young, and since he's in good health, I highly recommend that you seriously consider transplantation (preferably tandem transplantation). Thus far, it's the only treatment regimen that has been able to confer long-term survival on patients, and there is enough literature out there to support this.
Best wishes to you both,
Annick
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doubledd
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Posted: Tue Apr 7th, 2009 09:44 pm |
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| Annick, does a person have to respond to some sort of chemo combo in order to recieve the transplant? When I wrote to you last Nov.2008, my husband's counts were only 1400's that has now changed in April 2009, the count jumped from 5,000 to 12, 000. So, as you can see it is really being resistant and moving fast. In the mean time, we went to Stanford and they agreed he needed the transplant, then came back to Kaiser and were told to finish out the chemo regiment to see how he responds, which he hasn't. So, I emailed Dr. Johnston, of Stanford and asked for her advice, but she deferred it back to Dan's onocologist that said if he doesn't respond to the chemo then he won't be a good candidate for the transplant. However, the longer we have waited the higher his counts go. I have also read you don't respond as well with higher counts but does that mean he wouldn't have a chance if he did the transplant? Is is necessary to stay on a course that isn't working just to see? It doesn't make sense to me from all the research I have done. I have been pushing for the transplant when things were so much better for him numbers wise and now I just want to cry. Are we too late? Is transplant still the right thing? Is he too far gone in numbers, does he not have much time? My head is spinning with all of this. I need some answers that are straight foward and unbiased. He still feels good, some pain in the lower back due to fracture (20% compression) and we had to stop chemo to do radiation for 10 days because they just found 2 tumors on his spinal cord, then it will be resumed. I just want to do want will give us the longest survival rate with quality of life. Please write me back, I am absolutley desperate at this point. Thank you -doubledd, dea
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Annick
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Posted: Wed Apr 8th, 2009 04:11 am |
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Hi doubledd,
Thanks for your post. I sympathize with your situation and can only imagine how agonizing it must be to see your husband's markers rise. Unless your husband has any concurrent medical conditions that would make it unsafe for him to proceed to transplant, our program would not exclude him from candidacy for transplant based simply on his markers. On the contrary, the more extensive the disease, the more necessary a more aggressive treatment approach (like transplant) becomes, because lesser intensive treatments are much less likely to induce and sustain a remission. Also, whatever chemotherapy your husband is currently getting is going to be different than the high-dose chemotherapy used with transplant, and response, or lack thereof, to one chemotherapy does not predict response to a different chemo or chemo cocktail. If I were you, I would find a treatment center (and it may have a center that is not geographically closest to you) that not only believes in the transplant approach but also has a proven track record of doing them safely, and arrange for a consult as soon as possible. This will allow you to explore the transplant option, and then you and your husband will be able to make an informed decision about whether a transplant (or two) is the right treatment for him. I also want to add that if you want to explore the transplant option, please be careful about the amount of radiation that your husband receives to his lower back and/or pelvic area. Radiation can injure the marrow and therefore make it more difficult to collect the necessary number of stem cells for transplant, so that's definitely something to keep in mind.
I wish you and your husband all the best, and the most important thing that I can emphasize is that, based on your statement that your husband still feels well, it would be highly unlikely that he would no longer be a candidate for transplantation. He's still young, and given that the current treatment doesn't appear to be working, I think it will be worth it for both of you to explore the transplant option with a transplant specialist.
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dpcaregiver
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Posted: Wed Apr 8th, 2009 04:59 pm |
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Hi, I'm a care giver of a Myeloma patient. We are having our treatment at Huntsman and I can only encourage you to, at the very least, have your husband tested here. We have checked in to many different programs around the country and we certainly believe the aggressive, double tandem transplant is the best option for us. We attended a seminar last week-end and one of the things they stressed was IT IS ABOUT THE BEST CARE WITH THE BEST OUTCOME AND QUALITY OF LIFE, NOT ABOUT CONVENENIENCE OR DISTANCE to your home. Please, don't choose NOT to look at Huntsman if it is 'too far away" There are people being treated here from all over the world. Drs. Tricot and Zangari have data to back up a good outcome, like 10 + years of GOOD quality life after treatment.
We are heading back for our 2nd transplant in May. Can't wait to get on the other side of this. The transplant team, the Drs, nurses, staff, etc. are OUR team and will be my husband's primary physicians for the rest of his life. These people truly care and are doing amazing things with MM.
Best of luck to you and your husband
denese
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doubledd
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Posted: Thu Apr 9th, 2009 12:23 am |
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| annick, thank you for your prompt response. We are proceeding with all the necessary transplant testing with Stanford just so we have all our bases covered. He is only receiving 20 rads or whatever it is to the turmor sites. After radiation, we may or may not continue the chemo regiment he is on. His numbers went from 12,000 to 10,000 (just today) without doing any chemo only decadron for the last 5 days or so. Stanford has not said no, but they were concerned about the response to the chemo treatment. Is it true, though, that he may not respond at all to the transplant if the myeloma is too resistant to what he is recieving now? I think I understood your answer to be that one response to another may differ, right? So he does stand some chance at length and quality of life through a transplant. His cycle is due to end in May. Then in June, if all goes as planned we will end up at Stanford for the transplant. I hope they take us. My insurance is connected to Stanford or I would have been at Huntsmans a long time ago. Thank you, doubledd
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Annick
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Posted: Thu Apr 9th, 2009 12:59 am |
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You're correct. Your husband absolutely still stands a chance to respond successfully to transplant even if he has a less than optimal response or no response to current chemotherapies. Again, the drugs and doses are much different, so there's really no reason at this point to be pessimistic about his response to transplant based on current history.
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doubledd
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Posted: Mon Apr 20th, 2009 05:34 pm |
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Annick, just curious, could you tell me if an autologuous transplant is still viable if his bone marrow is at 70% cancerous, can it still be done if put through the purging process, does that work real well, are your chances less because you might get microscopic cancer cells anyway, or would a doner route be more efficient despite the risk of rejection? Please answer me today as we have a phone consult with Cedars-Sinai and I am trying to gather as much research as I can. Thankyou , doubledd
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doubledd
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Posted: Mon Apr 20th, 2009 07:31 pm |
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Kathy, I put in a phone call to you. But decided to cover all by basis. Do you remember what you bone marrow biopsy was before you had the stem cell transplant? There is a certain % of plasma cells that they want to be noncancerous or they give you the % of how many were cancerous. It is very important for me to know this information because we at a crossroads in what to do. Dan's is 70 % cancerous and Stanford is telling us it needs to be @ 20 % cancerous. Is it feasible to still to the transplant with that high of %? Please let me know ASAP as we have a phone conference with Cedars Sinai today. Thank you, doubledd
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Annick
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Posted: Mon Apr 20th, 2009 11:47 pm |
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The percent of plasma cells in his bone marrow will not exclude him from a transplant. However, Huntsman normally gives a preliminary cycle of DPACE before the first transplant to begin tumor reduction and maximize the benefit of the high-dose transplant chemo. As for the whether there are any MM cells in the stem cell product, based on conversations with the physician that oversaw the UAMS stem cell collection facility, the likelihood is very, very small, because cancer cells aren't likely to survive the freezing and thawing process. But, it certainly is possible that your husband may still have lingering MM cells in his body after the transplant, which is why Huntsman does two transplants and post-transplant maintenance therapy.
If Stanford doesn't want to do the transplant based on the plasma cell percentage in his bone marrow (and the literature doesn't really support that conclusion), would it be possible to appeal to your insurance company to allow you to go to another institution that would be willing to do the transplant? Hopefully, Cedars-Sinai will be able to help you both.
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doubledd
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Posted: Wed Apr 22nd, 2009 04:00 am |
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| That is exactly what I am proposing to do. We had a phone consult with Dr.Brian Durie from the IMF foundation and he said exactly the same thing. How could you help up appeal to our insurance for this procedure to be done at Huntsman? I don't know the ins and outs of everything but I am trying to collect evidence to prove our case. Dr. Durie is writing a letter in favor of doing the transplant at Huntsman because Stanford does not meet our needs and Huntman has more flexiblity in their program, more advanced since they concentrate on Myeloma. So what could you do to help us escalate the process of approval? We do need to finish our cycle of Chemo at this point according to Dr.Durie in order to get the numbers down as far as we can, which still may not be that much more down. But I think it would help us for Kaiser's sake so they can see we are doing everything they suggest so far. But I am not willing to let my husband die because Stanford is behind the times with how they do their transplants. So please get back to me and let me know where to go from here. I had calls from Huntsman on my phone but it was being charged at home. So I hope whoever called will call back tomorrow. Thank you for all your help. Doubledd or dea
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Annick
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Posted: Wed Apr 22nd, 2009 03:10 pm |
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Hi there,
We can do an appeal to Kaiser on your behalf, but we will need to obtain copies of your husband's medical records (primarily physician notes and dictations that outline prior treatments and responses) so that we can file a persuasive appeal on his behalf. I am out of the office today on vacation but will be back tomorrow. Please feel free to e-mail me at annick.tricot@hci.utah.edu, and I will give you further instructions on how we can get the ball rolling on this appeal asap.
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