Just want to say...
I apologize to anyone who I have possibly made feel their choices were unwise. I did not seek out being 'prolific' or 'influential'...my posts are about my journey with multiple myeloma. The things I have learned. The data that is out there about short and long term consequences.
I have had a hard journey. and I continue to have hard choices
It is as difficult for me as much as it is for every patient here. I have given my feedback based on what I know. Please do not think that my choices are any easier. They aren't.
But I want each and every person in the forum to know, I do not think anyone's choice is unwise.
I do want everyone to be informed by there choices. But there is no free lunch in terms of choices of therapy. We each choose based on our individual circumstances. We have no good choices.
So, do what is best for you. Feel good about your choices. And know there are no 'good' choices. They all come with saftey risks. I make no judgment about choices each individual has made.I get that each person chooses what they believe is best. More importantly, each patient should do what they believe is their best choice.
But I do feel an obligation to spell out what those choices are.
Know them. Be comfortable with them..but stem cell transplantation (SCT) is not therapy. AutoSCT do not change the course of the disease. That bothers me a lot. High dose chemotherapy (HDT) is the therapy, autoSCT is salvage. Each patient who has chosen HDT should tell patients that rather than telling them about how SCT worked..SCT didn't work..it rescued you. HDT..is what worked...and that is lethal chemotherapy doses. That was the choice. Don't romanticize it.
Folks deserve to know their TRUE choice and what their recovery is. Folks talk about ice chips and mouth sores as if that is due to SCT and it isn't, Those effects are due to HDT.
Tell the truth.
I apologize, if I have made anyone feel otherwise because of my efforts to make that distinction.
Forums
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Re: My Contributions
Hi suzirose
I have not read around to see what this is about or in response to. But, I will say you should not apologize for speaking your mind or voicing your opinions. your are a very smart and well read individual and I can confidently say that I think you have helped many more than you probably realize. Myself included! Unless you are directly attacking someone or trying to hurt someone it is their choice to be "offended". Things can be taken several ways especially in the form of text when there are no facial expressions or voice tones. We are all big Boys and Girls and have our right to our opinions and we also have the right to like or dont like what we see and read. I am firm believer in avoiding things I dont like. So, if i dont like a show I dont watch it! If I dont like what I am reading I dont read it.
Please keep up the "good fight" and be yourself! You are an amazing researcher and I wish I could be as diligent as you! And for the record, I agree with you about SCT'S!!!!!
Best Wishes
Art
I have not read around to see what this is about or in response to. But, I will say you should not apologize for speaking your mind or voicing your opinions. your are a very smart and well read individual and I can confidently say that I think you have helped many more than you probably realize. Myself included! Unless you are directly attacking someone or trying to hurt someone it is their choice to be "offended". Things can be taken several ways especially in the form of text when there are no facial expressions or voice tones. We are all big Boys and Girls and have our right to our opinions and we also have the right to like or dont like what we see and read. I am firm believer in avoiding things I dont like. So, if i dont like a show I dont watch it! If I dont like what I am reading I dont read it.
Please keep up the "good fight" and be yourself! You are an amazing researcher and I wish I could be as diligent as you! And for the record, I agree with you about SCT'S!!!!!
Best Wishes
Art
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Art - Name: Art
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2011
- Age at diagnosis: 40
Re: My Contributions
Hi Suzie....Hope I haven't in any way upset you either! We get on the 'myeloma' journey against our conscious will...no one chooses to get sick, that's for sure! I know that I have been sifting out facts and information for the last few years on this topic, because it is of vital importance to me and my family. i have come to the conclusion that for now at least there are many ways to approach multiple myeloma and that the trick is to try to determine which combination of treatments will work best for oneself or one's loved one. That is no small task! I have always relied on good medical advice, and now am able to learn more on my own too so as to be a better informed patient. Your posts have been helpful that way too!
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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: My Contributions
Your blog, and your diligent presentation of the science of myeloma, have helped me a lot.
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Alex Bicknell
4 posts
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