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KathyK
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| Joined: | Thu Oct 18th, 2007 |
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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 68 times)
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DougC
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| Joined: | Wed Dec 26th, 2007 |
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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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| Joined: | Sat Oct 20th, 2007 |
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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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