po18guy

Hi, Po18guy. I, for one, have very much missed hearing from you on What Next. We know it is not the same since Greg's passing, but we are trying to get it back together and I know everyone would love to hear how you are doing? Hopefully, you will et a notification and be able to respond. You always have uplifting massages, even in the face of pain. I hope you will come back and talk to us.

Hi, PO18guy. Nice profile pic! Some of us WN oldtimers are writing to others who haven’t been on WN recently, to find out how they are. We’d love to hear how you’re doing.

Hi Jim.....found my way here. David is very ill. They gave him a new transmitter and he developed an abscess under his scalp. It’s been a real ordeal with 3 brain surgeries and 4 plastic surgeries. He is home with a piccline IV and can not work for 3 months. It’s been a real ordeal but God and Jesus have walked us through it. I admit to being numb right now.

Hi Jim! It’s Marian333 if you remember me. I have been wondering how you and your wife are. Soon it will be 3 years since we lost our sweet Al. We have good days and bad days but keep on going. I miss him every bit as much as the day we lost him. I am thankful God and Jesus gave me 47 years with him and that we were holding hands when he was finally given peace. David had an extremely hard time with it but is working hard. They still live with me. It’s not what any of us wanted. I want them to have their own lives. But I do thank God and Jesus for them. I’ve had many falls and three surgeries and they took care of me. I’m having a lot of trouble walking but one of them is always near. I am blessed. I sure miss the other forum. I was a lot more comfortable there.
I hope to hear you are doing well. You are so strong.

I guess I should put my response here instead of on the other post - don't want to hijack it ...

My insurance company never complained. isn't that strange? It was 2 scans every six weeks for 5 years ... never a word. (Of course, I have government insurance - they probably haven't noticed it yet

I have been in 4 clinical trials, one horrible one at National Institute
of Health in Maryland. The others local here in L.A.

Hi Jim,

I've read a lot of your posts on different forums and was just curious if you know of any other survivors of PTCL-NOS? I would love to pick your brain about this disease if you have the time. Thanks!

Hi, Jim.....Marian333 here........how have you been doing?

Hi,Jim! How have you been doing? This is Marian333.

Is Kermica posting anywhere?

Yes, I remember Didee passed. I was just typing names and it slipped my mind. I always wanted to send her a thank you gift but did not know exactly what to make at the time. She was very loved by her family. She sent me lots of PMs about them and her life in Australia. I guess things change, it just seems to come as such a shock. I was sitting here and something told me I needed to check in.

Hey, took forever to find you. This is Ken in Tn, Bank Walker. What happened to the cancer forum. It is all gone I guess. Is everyone ok? Kermica, Didee Chemoman, Defens, Johnr?

Thank you for the encouraging poem!! It is true, true, true. Can you imagine this journey called life without a strong faith in God? Through it all, we know His Plan is good and right...

Thank you again! I really appreciate it.

I am hoping you are safe and warm from this winter storm

Diffuse large B cell is the description, if that helps to explain the sub type. JOE

Thank you for taking the time to respond. I walked this path with my husband so I am not coming in blind. In reference to mistletoe therapy, if you have time, take a look at a site called "Believe Big". There you will find information on the positive findings of mistletoe therapy. In fact, so positive, that Johns Hopkins is behind a clinical trial. I do not, and never will, leave my health solely in a physician's hands. What works for one might not work for another. We are all unique and respond differently to chemo as well as anything other drug based on our individual bodies and make-up, I have spent many hours in a hospital reading one clinical trial after another as well as any survivor story I could come across. Those hours spent in the hospital were in part due to an educated oncologist who never tested my husband for a DPD deficiency before starting him with chemo. As a result, his body was wrecked beyond repair or recovery after 8 treatments of a chemo he should have never had. How were we to know? We had never dealt with cancer...we had never been on a support forum. I happened to stumble across a post someone shared and asked the oncologist to test him immediately. He tested positive for the deficiency but we could not undo the damage. This is something that should be tested for in any patient. If I had not requested it for myself with my own treatment, it would not have been done at the center where I receive my chemo. My chemo nurse said she had never heard of it until I asked to be tested. So, I wish I could just trust in the traditional tried and true chemo regimes and the educated oncologists fully and completely, but I don't. I appreciate that it works for you and respect that. There have been many positive stories and studies of folks who have survived and thrived who have chosen no chemo or chemo combined with alternative therapies as well as surgery. So, in light of those, I keep an open mind and heart. As far as "conspiracy" theories, drug companies, insurance companies, physicians, and research hospitals are all driven by the almighty dollar and absolutely network for the most profits. Something really comes to mind..My husband had concerns that each time he had to be seen at the ER after hours, they immediately gave him Dilaudid and would send him home with no warning or info of how addictive and strong this drug was. He found out quickly how severe withdrawal could be on top of what he was already dealing with. We spoke with the head physician who informs us that he could see my husband at a pain mangement clinic he is over outside of the hospital. How convienient. That being said, there are dedicated people in each of those arenas who truly want to help this world be a better place but there voices are often overshadowed. I worked in the medical arena for many years so I am familiar with the systems in place . That being said, I am grateful for the treatment I have available to me here and the freedom to choose what path I take and will do so with my eyes wide open. I truly wish peace to all in their own journey as they seek to make the best decisions for themselves.

Good luck with your new drug. May your response be awesome and side effects non-existent!

I just saw this on YouTube. I thought it might be a little too controversial for the discussion but I would like to get your opinion.
https://www.youtube.com/watch?v=YKoGcYKTaPE&t=3s
In my opinion this is a step down a slippery slope