Thank you for all the replys. I picked up my bone marrow biopsy like I said and it shows 56% multiple myeloma cells and chromosome 13 and 8 missing so I guess that means it is an aggressive one?
With anemia I would say it is active and not smoldering. I think if the Hematologist had let me see the biopsy and explain what it meant it would have sunk in better. But they don't, just tell you what they think and off they go.
At this point I know this is way off the wall but I am using nutrition to control it right now. I am under a Doctor care and given a diet. It is a vegan diet, no animal proteins. Includes no dairy or eggs. A lot of juicing. Trying to make my body akaline. No sugar.
You know they use sugar to activate cancer for chemo, why don't doctors tell patients no sugar?
Apple Cider Vigegar in water. Excercise to eliminate inflammation.
I will have blood tests done to see if this helps and will be happy to update how it goes.
Forums
Re: Newly diagnosed and full of questions!
Hi Dee, I am coming to this late....just had a nice family vacation to Florida after 8 months of treatment! You indicate that you have 56% PC infiltration and I saw you previously posted that you had a hemoglobin of 7.7 and other very low related blood counts. You clearly have active myeloma pursuant to CRAB and that level of hemoglobin can be dangerous. What if it drops further as the myeloma further crowds out remaining red blood cell formation. At this point, IMHO, the diet or holistic approach is not going to cut it. See a myeloma specialist ASAP. P.S. I graduated to active myeloma last April while smoldering by having a pulmonary embolism and my hemoglobin tanked to the 8's from the 12's in a matter of weeks. My doctors said I am lucky to be alive, Good luck.
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: Newly diagnosed and full of questions!
Hi Dee, I couldn't get your situation out of my mind, especially since I had my own close call last April. A hemoglobin below 8.0 is considered severe anemia and can be considered life threatening and needs immediate attention. Yours is below that. It is at the level where transfusions may be given. Aren't your current doctors concerned with this?
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: Newly diagnosed and full of questions!
Hi Dee - I read your last post and agree with others. I've always believed in good nutrition which was further enhanced with degrees in clinical nutrition. I am 57 and for decades have been a vegetarian, grew my own vegetables, and avoided eggs/dairy. My diet has always been loaded with foods high in antioxidants and buy organic produce. Plus I exercise daily by hiking. But last year I was diagnosed with the precursor to multiple myeloma (MGUS) and if I transition will seek immediate treatment with a myeloma specialist and maintain my lifestyle.
I agree sugar is not a healthy food (assuming you mean table sugar, soda, etc), and juicing fruits/vegetables provides a more blunted form of carbohydrate (main source of energy). When I first told people about my MGUS, I was surprised at the response from a few friends who felt because I didn't consume animal proteins/iron that maybe this was the cause of having abnormal plasma cells! Who knows? Take care and keep us updated.
I agree sugar is not a healthy food (assuming you mean table sugar, soda, etc), and juicing fruits/vegetables provides a more blunted form of carbohydrate (main source of energy). When I first told people about my MGUS, I was surprised at the response from a few friends who felt because I didn't consume animal proteins/iron that maybe this was the cause of having abnormal plasma cells! Who knows? Take care and keep us updated.
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Dianem
Re: Newly diagnosed and full of questions!
Dee has a hemoglobin of 7.7 and 56% PC infiltration. Doesn't anyone else here think this is an urgent situation and yet the last poster talks about nutrition! Get a grip.
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: Newly diagnosed and full of questions!
....I am sure that a low hemoglobin level (anemia) would be cause for concern for Dee and her physicians. One would want to restore the hemoglobin to healthy levels somehow.
I didn't know I had MGUS before my dx, although that would have been good to know, since I could have hopefully avoided injuries that came in the form of vertebral fractures. Also was very tired and sluggish at that time, which was noticeable to some friends. I did have slightly below normal levels of hemoglobin, and even that was enough to drag me down. I think that Terry had health problems that were really dangerous also.
But I guess one has to go with what the myeloma specialists would consider to be a switch to active myeloma. I personally would want to be closely monitored by doctors who have a lot of experience in the area of MGUS and myeloma. Good luck Dee! Hope it's not active myeloma, but if it were, you could get into treatment soon, and thus hopefully avoid serious complications!
I didn't know I had MGUS before my dx, although that would have been good to know, since I could have hopefully avoided injuries that came in the form of vertebral fractures. Also was very tired and sluggish at that time, which was noticeable to some friends. I did have slightly below normal levels of hemoglobin, and even that was enough to drag me down. I think that Terry had health problems that were really dangerous also.
But I guess one has to go with what the myeloma specialists would consider to be a switch to active myeloma. I personally would want to be closely monitored by doctors who have a lot of experience in the area of MGUS and myeloma. Good luck Dee! Hope it's not active myeloma, but if it were, you could get into treatment soon, and thus hopefully avoid serious complications!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Newly diagnosed and full of questions!
Well, so far my eyesight is much clearer. Like I have new glasses. My muscle spasms are gone. Fewer tingling in my feet and hands.
Just have occasional nausea.
Yes, no sugar of any kind. I am avoiding foods that feed the cancer.
I get a complete blood work up in 4 weeks.
Just have occasional nausea.
Yes, no sugar of any kind. I am avoiding foods that feed the cancer.
I get a complete blood work up in 4 weeks.
Re: Newly diagnosed and full of questions!
Hi Dee, if your hemoglobin is really 7.7 as you previously indicated, you are ill advised to wait four weeks for more blood work and you are tempting fate.
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: Newly diagnosed and full of questions!
Hi Terry - I must have misunderstood dee77 from her post - appeared to me she was considering using nutrition/juicing/vegan diet as an alternative treatment to myeloma. Although I support healthy foods, if I progress to Myeloma chemo will be my number one choice to fight this serious cancer. I probably didn't communicate this well enough.
When first diagnosed with MGUS, my doctor asked about exercise, diet, sleeping, etc. When I told her about my vegan diet, she said my high antioxidant vegan diet or any supplementation will not affect whether I progress to Myeloma. Obviously my diet wasn't a preventative factor in developing MGUS. So in summary, I wanted to encourage seeking treatment rather than a specialized diet. Sorry for the misunderstanding everyone.
When first diagnosed with MGUS, my doctor asked about exercise, diet, sleeping, etc. When I told her about my vegan diet, she said my high antioxidant vegan diet or any supplementation will not affect whether I progress to Myeloma. Obviously my diet wasn't a preventative factor in developing MGUS. So in summary, I wanted to encourage seeking treatment rather than a specialized diet. Sorry for the misunderstanding everyone.
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Dianem
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