[suzierose]

Anemia ... is it big business?

by suzierose on Fri Jul 20, 2012 2:39 pm

Since anemia is a very common symptom of multiple myeloma..I thought this article might be of interest to many of us.

http://www.washingtonpost.com/business/economy/anemia-drug-made-billions-but-at-what-cost/2012/07/19/gJQAX5yqwW_story.html

[Christa's Mom]

Re: Anemia ... is it big business?

by Christa's Mom on Fri Jul 20, 2012 2:45 pm

Ha-Ha Susie Rose! I was just getting online to post this article. I should have known you would have beaten me to the punch. VERY interesting.

Lyn

[suzierose]

Re: Anemia ... is it big business?

by suzierose on Fri Jul 20, 2012 3:04 pm

Hi Lyn!!

How are you and how is Christa doing? You were so helpful to me right before harvest..I really appreciated your feedback. It helped a lot.

This article is QUITE interesting...I will refrain from opining...as it may be viewed as cynical.

[torimooney]

Re: Anemia ... is it big business?

by torimooney on Sat Jul 21, 2012 4:55 pm

I’m only a few months into this diagnosis of multiple myeloma and I am quickly reaching the conclusion that at times what is being ordered in not always for our benefit. After having my first Zometa, they saw a small decrease in my RBC, HGB and HCT. I refused the injection of a medication for anemia. I was feeling fine and continue to feel great and have none of the usual symptoms of anemia. I told the doctor my mottos is” if it’s not broken, don’t fix it”. I am using this same philosophy when determining my course of treatment for multiple myeloma. Fortunately, I found a multiple myeloma specialist in LA who believes in a conservative approach and his recommendation is I hold off on any medication for multiple myeloma other than the Zometa, get monthly labs and see him 4x/yr. That was music to my ears. However, the local oncologist seems to be overanxious in treating my numbers and forgets there is a person concerned about quality of life connected to those numbers. I stand my ground with each encounter. I don’t bury my head in the sand, nor do I live in denial about my multiple myeloma. I do my homework and I’m not afraid to question and refuse his recommendations if I don’t agree, particularly since I have a multiple myeloma specialist guiding me. I’m in the medical profession and find most people go blindly along with their doctor’s orders, not questioning them and therefore are unable to weigh the benefits over the risks to make an educated decision.. We need to question our doctors when we are not comfortable with their treatment plan and ask ourselves who is this really benefiting.
I didn’t mean to get on my soap box. Thanks for posting the article.

[angiebaldy]

Re: Anemia ... is it big business?

by angiebaldy on Sat Jul 21, 2012 5:39 pm

You are not at all on your soap box. No one has your best interest at heart more than you. I thank God only have MGUS at present but I also have lupus. Many years ago I was asking my internal medicine doctor quite a few questions about some things I had researched about lupus. After a few minutes I apologized about my inquisition because much of what I asked him he did not know. I will never forget what he said. " Never apologize to anyone about learning more about your diagnosis. You are the one who has your best interest at heart and you probably know more about lupus now than I ever will."

I too am in the medical field and often feel intimidated by my doctors, but I keep plugging away and asking questions and suggesting things that might not have crossed my docter's path before. Am I a pain in the behind? You bet! Do I care? Not a bit! I am the only one who has my best interest at heart and at the end of the day that is all that matters.

Keep making decisions about your care just the way you are because we all know big pharma doesn't have our best interests at heart only dollar signs!

[greg matthews]

Re: Anemia ... is it big business?

by greg matthews on Sat Jul 21, 2012 9:02 pm

toridon wrote:
> I’m only a few months into this diagnosis of multiple myeloma and I am
> quickly reaching the conclusion that at times what is being ordered in not
> always for our benefit. After having my first Zometa, they saw a small
> decrease in my RBC, HGB and HCT. I refused the injection of a medication
> for anemia. I was feeling fine and continue to feel great and have none
> of the usual symptoms of anemia. I told the doctor my mottos is” if it’s
> not broken, don’t fix it”. I am using this same philosophy when
> determining my course of treatment for multiple myeloma. Fortunately, I
> found a multiple myeloma specialist in LA who believes in a conservative
> approach and his recommendation is I hold off on any medication for
> multiple myeloma other than the Zometa, get monthly labs and see him 4x/yr.
> That was music to my ears. However, the local oncologist seems to be
> overanxious in treating my numbers and forgets there is a person concerned
> about quality of life connected to those numbers. I stand my ground with
> each encounter. I don’t bury my head in the sand, nor do I live in denial
> about my multiple myeloma. I do my homework and I’m not afraid to
> question and refuse his recommendations if I don’t agree, particularly
> since I have a multiple myeloma specialist guiding me. I’m in the medical
> profession and find most people go blindly along with their doctor’s
> orders, not questioning them and therefore are unable to weigh the benefits
> over the risks to make an educated decision.. We need to question our
> doctors when we are not comfortable with their treatment plan and ask
> ourselves who is this really benefiting.
> I didn’t mean to get on my soap box. Thanks for posting the article.

Wow refreshing

I am not a good boy when it comes to some, LOL doctors. I went off my meds in Feb 2011 since they told me i was in remmision. I question putting Revlimid in me knowing it kills cells. I did the same for zometa knowing it lower or can lower the blood levels. My were low enough after stem cell transplant. My counts are almost normal.

Am I in remission still I dont know. I feel as i am some minor issues but I go back to CTCA ON THE 24TH AND 25TH to get checked out. I do research maybe not like some. I have looked into the otherside of the spectrum such as food antioxidents and have ben looked at like i got horns growing out of my head. Very hard sometimes when family friends and doctors put so much pressure on you.

I say this I had to go through what i did to get were I am and i DO THANK MY DOCTORS.
But I know my body i will tell you when somrething is wrong.

Thanks for your not a soap box post.

[Dr. Peter Voorhees]

Re: Anemia ... is it big business?

by Dr. Peter Voorhees on Sun Jul 22, 2012 2:50 pm

This article should remind us all that there are potential risks associated with anything we do, be it chemotherapy or supportive care measures for myeloma management. It is critical that drugs be studied to the point of FDA approval and well beyond to assess for unexpected long-term adverse effects. For example, carfilzomib is a very effective myeloma therapy that has helped many patients, which is why it was just FDA approved this past Friday. However, as with anything, it has important side effects that need to be evaluated further in on-going and future studies. The FDA has acknowledged such.

Knowledge is power and will help all of you living with this disease receive the best care and avoid the pitfalls of both over- and under-treatment. Treatment works best when there is a give and take between the doctor and the patient. This can happen more effectively if you are armed with information about the disease and its treatment.

Pete V.