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dawg fan
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| Joined: | Sun Mar 29th, 2009 |
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Posted: Sun Mar 29th, 2009 08:22 pm |
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My husband was diagnosed 1 1/2 yr ago at age 47 with Myeloma. He seems to be in stage 1 by blood work and docs, although there seems to disagreement. They say he's not symptomatic. I know they mean by the staging markers but he has debilitating fatigue. His anemia is mild (Hct 35) and stable so not treatable. His WBC are 4 and neutophils 2, also not treatable. M spike 2.2, not treatable. Bone marrow between 27 and 34%, not treatable. He is IgA lambda light chain with light chains now 50+. We have been told that "studies" show that treatment in stage 1 has been shown to increase time to progression and remission times but that mortality was not changed so it's not worth the risks of the treatment. Has anyone seen these studies? What was the average age of the patients in the study? It's hard to find much info on MM patients <50.
We are getting very frustrated being not treated but continuing to feel horrible. Any advice would be appreciated.
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dpcaregiver
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Posted: Sun Mar 29th, 2009 11:10 pm |
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Sorry to hear about your husband. I can't comment on the medical stuff so much as i am a caregiver of a Myeloma patient (he is 62). I wondered though if you were seeing a "Myeloma Specialist?" Also, have you had a second opinion yet? Guess that would be the only recommendation I can give. Huntsman is one of the BEST in the world at Myeloma treatment, so check out their protocol.
Good luck to you and your husband.
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dawg fan
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Posted: Sun Mar 29th, 2009 11:31 pm |
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Thanks. We are seeing an oncologist who treats a lot of myeloma, but I think most of his patients are older. We did go to Fred Hutchinson to the myeloma clinic at the beginning but they didn't recommend treatment at that time and our doc seems fixated on that.
We know we need to see another doc. We were hoping to be treated closer to home and not have to go to the Hutch again, but we may have to to get better answers.
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dpcaregiver
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Posted: Mon Mar 30th, 2009 12:12 am |
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Please don't limit your thinking to "close to home" There are people who come to Huntsman from all over the world. Arkansas has much the same protocol with tandem stem cell transplants too. As I expect the Chat room moderator will tell you. Find someone who has had SUCCESS and I mean long term success with their treatment protocol. How many Myeloma patients do they treat each year? What are their survival statistics? We chose Huntsman because they have scientific stats for 10 to 15 years post transplant in complete remission. All Drs Tricot and Zangari do ais Myeloma. There are lots of foundations that can actually help with travel costs, etc. so don't accept anything less than the best for your husband and you. We currently have two good friends who have Myeloma. Kevin is 43 and Mark is 45--both are being treated at Huntsman. Your husband is way too young to not get the best possible care with the best possible outcome. Myeloma is becoming a very treatable disease, but you need to find the right treatment for YOU. Six months of heavy treatment is nothing compared to a lifetime of healthy living afterward.
Good luck to you both, there are answers out there that will fit what you need, keep looking until you find what is right for you. This a very frightening disease, but it ot a death sentence. Not only that, symptoms can be treated so that there is good quality and pain free life.
I'll be praying for you both to find the right doctor and treatment for you!
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Annick
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Posted: Mon Mar 30th, 2009 05:49 pm |
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Hi dawg fan,
The fact that your husband has debilitating fatigue and "feels horrible" means that he's symptomatic and can benefit from treatment. By way of disclosure, I want to let you know that I am a research coordinator for the Huntsman myeloma program and am not a physician, but with the marker results listed below and his anemia, I would definitely recommend that you and your husband seek a second opinion. I don't know how long ago your husband went to Fred Hutchinson, but it's possible that "wait and see" was appropriate at that time but may no longer be appropriate, given your description and test results.
I would also add that I think our physicians would disagree with the statement that implementing treatment sooner rather than later is not worth the risk of treatment. Generally speaking, patients are much better able to tolerate treatment and to survive it when they are still in overall good condition and haven't been debilitated by this disease. I would recommend that you press your physician further about which specific studies he/she is referring to.
As stated by the others, your husband is still young, and, like all patients, deserves the best possible care. Best of luck to you, and if there's anything we at Huntsman can do for you, please don't hesitate to contact us. Take care!
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Chat Moderator
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Posted: Mon Mar 30th, 2009 06:18 pm |
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Hi,
While it is not possible for our doctors to give medical advice without first examining a patient in our clinic and having access to all medical records, I spoke to one of our physicians and he expressed concern that a wait and see approach in this case may not be the right thing to do and that it does indeed seem that your husband could benefit from treatment. There is a high percentage of plasma cells in the bone marrow and the free lambda light chains are high as well. We would recommend he see a myeloma specialist who can do some advanced testing to find out more about the details of your husband's myeloma, especially in light of his young age.
Please let us know if there's anything we can do to help, or if you have further questions. It's so important to get the very best and effective treatment possible.
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