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Multiple Myeloma diagnosis

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Multiple Myeloma diagnosis

Old 02-04-06, 09:59 AM
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netso
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Multiple Myeloma diagnosis

I have just been diagnosed with Multiple Myeloma. Does anyone on this forum have it? Has it changed your riding? I will be taking Procrit (EPO), my hematocrit and iron levels are very low. I am scared, but I hear the disease is easily managed.
Stan
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Old 02-04-06, 11:33 AM
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Netso,

I am saddened to hear of your PCM (Plasma Cell Myeloma) diagnosis. The good news is that there are plenty of good treatments out there, and it has an excellent prognosis. Have you had a bone marrow biopsy yet? And do you have a good hematologist-oncologist? My ability to help you is limited - I am a pathology resident about to go into my hemepath fellowship. Depending on your treatment, you will probably be pretty fatigued. Take it easy. You will return to riding soon enough.

It's understandable to be scared. I had recurrent cancer with mets and I was terrified. But you have an excellent prognosis. Do you have a supportive family? I also recommend that you not only bring up your concerns with your Heme-Onc doctor but also find a counselor to talk to. Your doc can recommend someone.

Hang in there.
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Old 02-04-06, 12:21 PM
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You are taking some tough news with a positive attitude, and that is the key to regaining your health. A friend of mine has been dealing with similar problems the past two years. She has times when her treatment makes her too tired to ride, but most of the time, she rides every day. Riding has helped her to get stronger, and has helped her spirits as well.

So, ride when you feel like it. Sometimes even a short, easy ride is a good way to relax and deal with stress. Best wishes for a swift recovery.
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Old 02-04-06, 07:51 PM
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I wish you a speedy recovery. My mom was a multiple myeloma patient for about four years. Some of the things that worked for her while she was a patient were: a supportive family, a terrific hematologist, revamping of diet (stressing healthful and wholesome diet choices), having a good perspective on her illness and a terrific mental attitude.

There will be days when it gets very tiring to do anything at all, but with a positive mental attitude, those days will be few. It is okay to be scared, but it is a beatable disease.

I remember that the first thing I did when my mom was diagnosed, was to go on the web and learn everything I could about the disease. I remember reading and printing for my mom some inspirational stories from people battling the illnesss. One of the most inspiring was from a young physician in South Africa who came down with what he thought was some cricket (a baseball-like game) injury, but was actually multiple myeloma. I would encourage you to search through Google or Yahoo for his story. It is a story worth reading.

I wish you all the best.

Regards,
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Old 02-05-06, 12:08 AM
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PS. Feel free to PM me if you have any heme-path questions!! I will try my best to answer them.
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Old 02-05-06, 02:43 PM
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Sorry to hear about your diagnosis. Time to start thinking about legacy concerns and quality of life issues. I think the range is roughly 5 to 10 years for most people. My mom had it for about 9 years. It was only the last 2 years that were really tough. There's no reason why you couldn't cycle, especially in the first years. But, make sure there's no stress on bones and don't overdo it. I'ld look for an easy to pedal bike and not look to set speed records. Also don't select rides where there is a fair chance of falling. You don't need that trama.

Just being outdoors and enjoying the ride can do wonders for quality of life. Good luck and don't be afraid to ask others for support.
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Old 02-08-06, 09:37 AM
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First of all, you have my sympathy. The positive outlook you have will help you through your treatment, and will help you more than you think. As will the support of your family and friends.
You're going to see the best and the worst that conventional medicine has to offer here keep thinking of a positive outcome and youíll be better off.
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Old 02-08-06, 01:05 PM
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Unconventional medicine, ie urine redopping, is marginal at best. It might buy 1 year but comes at cost of $10-15k every 4-6 months.
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Old 02-08-06, 08:24 PM
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Nothing to add but sorry to hear about it- and use the bikeforums as a resource and support group for you.

All the best,

Koffee
 
Old 02-09-06, 12:34 AM
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stan, keep that head up. A good attitude will make treatment less painfull. Like the above doctor, i offer my self for any questions i can answer. I am a Hematology/Oncology RN
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Old 02-09-06, 07:04 AM
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For years, my wife and I dealt with her five or six chronic illnesses, and I had a serious medical condition years ago. From those experiences, let me add this lesson: always remember that it is your life, your body, your health, that is involved, not the doctors', and you have a right to have your questions answered and to make the big decisions.

According to your profile, you are educated, and once you have done your research about your illness, don't be afraid to challenge the medical wisdom, insist on explanations and alternatives, and thus armed, decide what you think is best for you. I usually describe it this way: "You drive the bus. The doctors are your crew--mechanics and navigators--but you decide where things go."

Secondly, treat with doctors you trust. I firmly believe that my wife's pulmonary doctor helped extend her life by several years, both through his medical skill and his support.

Lastly, don't be afraid to lean on family and friends for support--don't ignore the importance of positive thoughts and feelings, your mental and emotional outlook, in fighting illness.
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Old 02-09-06, 11:14 PM
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Originally Posted by HiYoSilver
Unconventional medicine, ie urine redopping, is marginal at best. It might buy 1 year but comes at cost of $10-15k every 4-6 months.
Ever see the effectiveness of conventional medicine? It's the reason we pay over twice per capita in medical care than they do in Japan, yet they came in first in the WHO quality of life study, and the US came in a solid 37th. Each system has their own strengths and weaknesses, but the best acute care system in the world is no match for the damage caused by the weakness of the chronic and preventative side of the picture. http://www.mercola.com/2000/jul/30/doctors_death.htm explains how their own peer reviewed journal shows how dangerous it is. And if thinking about if gives you a headache, have an aspirin - while remembering that 10,000 - 20,000 people each year die from use of that type of drug.
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Old 02-10-06, 10:09 AM
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Yeah, in general but with Multiple Myeloma they don't know what causes it and how to prevent it. We've been "fighting" cancers for decades and still don't know what causes it. I suspect best prevention is more natural food sources with less additives, pesticides, bioengineering, hormone treatments, etc.

On the treatment side, I have heard some new treatments in the last 2 years are way ahead of the treatments available 10 years ago and have better success than the urine redoping. Keys seem to be:

1. early diagnosis and treatment
2. consistent looking at quality of life issues during treatment
3. planning legacy activities to reduce stress during treatment
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Old 02-11-06, 05:46 AM
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netso
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I am almost pain free, will begin riding again next week. The meds have been working, and I am encouraged. Thanks for the support!!!!
Stan
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Old 02-11-06, 12:22 PM
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Originally Posted by HiYoSilver
Yeah, in general but with Multiple Myeloma they don't know what causes it and how to prevent it. We've been "fighting" cancers for decades and still don't know what causes it. I suspect best prevention is more natural food sources with less additives, pesticides, bioengineering, hormone treatments, etc.
Actually, this is not quite true. Multiple myeloma, while we don't know exactly what causes an abnormal monoclonal plasma cell population to proliferate, is associated with mutations of certain genes as well as exposure to certain toxic chemicals. But diseases such as AML (acute myelogenous leukemia) are directly associated with conditions such as myelofibrosis - in fact, if you have myelofibrosis (which is associated with chemical exposures), you have to be monitored for progression to AML. CML (chronic myelogenous leukemia) is directly associated with the translocation of the Philadelphia chromosome (aka, BCR-ABL, resulting from t(9:22)). In fact, cytogenetic studies performed on the bone marrow biopsy that are positive for the translocation is diagnostic of CML.

There is very little scientific data available supporting a direct association between food sources and cancer. Pesticides can cause organophosphate poisoning as well as any number of conditions, but a direct link to blood dyscrasias has not been established. Hormone treatments cause precociuos puberty and clear cell carcinoma in the female offspring of the affected female, but again, very little evidence of blood dyscrasias. However, it never hurts to err on the side of caution. Just because no causal evidence has been proven does not been that it doesn't exist.
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Old 02-11-06, 12:23 PM
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Originally Posted by netso
I am almost pain free, will begin riding again next week. The meds have been working, and I am encouraged. Thanks for the support!!!!
Stan
Awesome! I have my fingers (and toes) crossed for you!
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