My Mum has just been diagnosed with the above cancer and im told that very little is known about it so it is treated the same way as the more common and better survival rate ALK positive. I wanted to know if anyone knows of anyone doing work in this field that is new and more successful than the traditional methods used, or if there any any better therapies or even additional therapies we can give her during chemo tat will increase the grim rate of succes the doctors shocked us with.
Looking through some of the peer-reviewed journals for papers published in 2008/2009 on this type of NHL, I keep coming across authors from the Department of Hematopathology at MD Anderson, notably Jorgensen and Miranda at the department's website. Contact #s and emails are listed there, you might try reaching out to them. Good luck.
I cannot express enough my gratitude for your email. Thankyou so so much for sharing your knowledge with me! I will follow this up immediately. God bless you. Warmest Thanks - Sam
Can you please tell me if the web site www.cancerfightingstrategies.com can be taken seriously. It seems genuine but there is that element of sensationalism-conspiracy theory coupled with the lack of information on its authors that makes me think its a bit of a scam. What do you think? regards
Sorry I'm just noticing this question from you, but I'll look into it right now and let you know what I think.
I found multiple red flags on that site, here are four and why:
They're selling something. It's one thing for a medical/health site to have ads, it's another for them to be selling a health protocol, especially one that purports to cure cancer. That's NEVER a sign of credibility.
There's no health certification. Note for example at the bottom of this page, you can see the HONcode, which certifies that the site's medical information has been reviewed by an independent entity and verified. The site you mentioned has no such certification.
The testimonials. Testimonials are always a bad sign. Who is "John S" or "Mary G" claiming to have been cured? Anybody could have written those, there's no way they can be trusted; there's no way to verify them.
The 'About us' omission. I couldn't find anywhere to click that gave me any idea of who was running the website. No easy way to contact an admin or anyone associated with the site. If what you were doing was legit, why would you NOT make yourself transparent in that regard?
Dr. Kenneth Hymes of NYU Clinical Cancer Center has treated my husband for this. He used CHOP + Etoposide and remission was achieved for about 18 months. His cancer was even more rare in that he also had transformation into intravascular t cell lymphoma and this was the treatment of choice. Unfortunately, now we just were told that his cancer came back (on the eyelid no less) and we are scheduled to see a doctor at Memorial Sloan Kettering in NY regarding radiation treatment to this delicate area.
You didn't mention what stage your mom is in and that would play a role in treatment.
Thanks so much for your reply.
Mum is stage four, bone marrow involvement, lymphs and some organs but minimal on the organs. They have given her three lots of chop and she has tolerated them extremely well with very little toxicity. I would like them to swap to cheop but they seem very reluctant to do so saying that not enough evidence exists to show its better than chop but according to my research that just isnt the case, so im confused.Thats why im trying to see what others have done.
Thanks so much for writing back to me and i wish all the best for your husband.
How many times did they administer the CHEOP regimen for him and did they try any other things as well?
Initial therapy 4 Weeks
Continued therapy 5 - 8 weeks
You're a gem mate
Warmest Thanks and God Bless
My name is Juanita & I was dx. with Anaplastic Large-
cell Lymphoma, ALK-Negative Type Nov. 2009.
I am receiving CHOP. My last treatment is tomorrow
June 1, 2010. I was so shocked when I was diagnosed.
This does not run in my family. I have been searching
for the cause, so that I can avoid any risk factors
in the future. Pray for me.
Knowledge is power