po18guy

Activity

  • BoiseB
    Hi po18guy I decided to go to your wall as I don't know when that discussion is going to explode. But I thought you might be interested my experiance with prayer. I have a friend who was pronounced terminal a little over a year ago. She she had a metatastic tumor pressing against aorta. It was at the time untreatabe she would have six weeks to 3 months to live. Many of us prayed for her. In three months she went back to the Dr, and the scans showed her tumor was shrinking. The Dr. did that scans twice and got the same results so he started Chemo therapy six months later scans showed the tumor still shrinking at this point, Her Dr. a man of science, declared that he believed that it was only prayer that was keeping her alive. This summer she was able to visit her children and grandchildren.
    October 2018
  • Susanheller68
    Omg... I just read what you've been thru. I can't imagine .... I'm newly diagnosed and only endured 1 cycle of clinical trial...it's Soooo hard. So much information to absorb. I just want this nightmare to be over .
    October 2018
  • MarciaLynn
    Thanks for your recommendation that I check out comprehensive cancer centers for treatment of double hit NHL. There are two listed within 45 miles of my hometown, and I am fortunate to already be a patient at the University of Michigan Rogel Cancer Center. I have done very well as a patient there and receive the best of care.
    August 2018
  • caryatid
    Hi, would you share your doctor's name in Seattle that finally diagnosed you and found you the treatments and trials? I know someone recently diagnosed with Epithelial Lymphoma (also rare) and wanting to know where to go for a second opinion.
    August 2015
  • geekling
    Hmmm. We have as many commonalities as we do differences. I keep reading about mismanagement and mis-care, and mis diagnosis. Older or younger, I think it is high time we think again about the folks who graduate with degrees in medicine. Maybe only the top half of the class ought to be degreed? I'm truly wondering if half the doctors slept through their classes or were not actually more than barely smart enough to copy a test answer. .... Are you, I hope, still in remission? I say I am cancer free. Is there a power to words? It doesn't ever hurt to listen to new or even 'out there' ideas. Sometimes they can be interesting. Didn't you ever feel like a character from Atlas Shrugged when dealing with a medico? Best wishes.
    June 2015
  • LiveWithCancer
    WhooHoo! Congratulations on your no cancer status!!! How awesome is that?!?

    Thanks for your post on the topic of improvements being made in cancer treatments. It is appreciated.
    June 2015
  • Uniqlady
    I'd looked at the Komen link. Thank you for the other link, that provided info directly related to tamoxifen and diabetes. It lets me know what to ask my oncologist!
    April 2015
  • keahemalie
    Thank you. Yes, advances are being made especially in the more common forms of cancer that affect the most people. That's a positive thing.
    March 2015
  • keahemalie
    Hi. I just read the blog about you and your journey. And I often read your posts here, "passing by" each other on pages, so to speak. I also have a "rare...unusual...weird" type of cancer. In fact I've yet to find anyone else here, or anywhere, that has the same kind. Yet we all share similar treatments and experiences so I find What Next to be of great support. I wanted to thank you for the inspiration and knowledge you so freely share. It means a lot to people like me and anyone else who has a stage IV diagnosis with no formal treatment protocols and whose future is completely unknown. Many thanks and blessings!
    March 2015
  • Janet12
    Thank you for the reply, I actually am being seen at a cancer center. Now I have a better understanding from these post what to look for and what to ask. Once again, thank you!!!
    February 2015
  • soniasonia
    thanks for input on Vitamin C. Here is another one Budwig Diet. What do you make of this?
    http://www.cancure.org/budwig_diet.htm

    February 2014
  • barryboomer
    Check out MY post on this thread and my profile.
    Are you changing your life at home?
    There is more you can do and try
    February 2014
  • Virginiamarder
    You answered my question. The answer to your question is no.
    November 2013
  • JStrong
    Hi there. I have a question for you! My brother has NK T-Cell lymphoma which I know is different than your diagnosis but was curious if you have yet completed your treatment yet? My brother is completing his treatment and is getting ready to have a bone marrow transplant and was wondering if this was in the plans for you as well.
    May 2013
  • 2HighballAir
    Thanks to you and the others who have posted on your wall. Sorry I've not responded. I realized that each person's T-cell lymphoma is different and trusted our oncologist. But with all that has been done so far, including a stem cell transplant with his own cells, there are still some cancer in the bone marrow. We see our oncologist in 2 days and will be given sme ideas of next steps.

    I do know there is ALK- and that there are very rare CD4 cells lacking CD3 and CD7 among other things.

    Last but not least, I'm wondering how I'd contact MD Anderson and in which part of U of WA he is located. I suppose I should also find out who Bashiem sees at U of MN.

    Were you an Viet Nam vet? Thanks for all your help to others. Guess I should write more often. 2HighballAir
    April 2013
  • marshala1
    Thank you for clearing this up for me. I feel much better now, and I have achieved remission with R-CHOP. Congratulations on your remission!
    November 2012