judithj

Hello Judithj,
Update from Homans:
After failing two standard chemo treatments R-EPOCH and R-ICE, I finally got to try the CAR-T, and had the infusion back on June 5th.
My 30, 60 & 90 day scans now show no sign of Lymphoma cancer.
My ANC count was the last blood count to recover, and took about 90 days, but I’m now off all my medications, and feeling good enough that I decided to go back to work on 9/6/19, which was perfect as my short term (6 month) disability was about to run out.
I read about a new drug treatment called BITE. I was told they are doing a trial at Barnes Hospital at St Louis, A friend of ours that also had Double Hit Lymphoma went to Barnes to get in a BITE trial after failing the CAR-T treatment.
BITE works similar to CAR-T, but uses a drug bridge to bind the T-Cell to the cancerous B-Cell, instead of reprogramming the T-Cells to bind directly to the cancerous B-cells to destroy them.
Thank-you for your encouragement, it gave me the hope I needed when I was really down, and it helped me get through my journey. Since CAR-T is so new, only time will tell how well it will last on keeping the cancer in remission, but I’m very impressed so far. Very Best wishes to you, and hope all is going well with you.

Hi Judith! I JUST saw the message you left me a few weeks ago. CONGRATULATIONS on your NED! I am so happy for you. How are you feeling? I imagine you're still pretty exhausted. I have a scan on Monday the 28th. Feeling nervous, but there's nothing I can do about it. Fortunately, my doctor usually calls me the same day with results so I don't have to wait long.

Again, I'm really, really happy for you. I know you've had a tough road. Stay in touch! -- Donna aka/Gymmom

Can try this;
Awspirer at juno

Hi Judith, Are you still at Stanford? I've been thinking of you, and hoping you're doing okay. Please touch base if you're up to it and care to. I'm sending positive thoughts!

Hi judithj…….I haven't seen you on the site in a long time so I thought I'd check in. Did you get into a clinical trial? I hope you're doing okay. Check in when you have the time. Gymmom/aka Donna

Hi judithj. I see you have been diagnosed with nhl. I was diagnosed in June of 2015, stage IV. I'm almost 66 now. Do you know which nhl you have been diagnosed with? Mine is diffuse large b-cell. Are you having just chemo? That's what I did. If so, do you know what kind? A lot of nhl people have R-chop or R-epoch. I had R-epoch and tolerated the chemo pretty well after the first round. I was five days on a pump and 21 days off for a total of 6 rounds.

I see you don't live far from me. I'm in San Lorenzo (between Oakland and San Jose). Please let me know if you have ANY questions. I'm more than happy to answer or just listen. You can also private message me on Facebook if you like. Donna White, San Lorenzo, CA.

In the meantime, you take care! You can handle this.

Donna
aka Gymmom

Hi. I just saw this. I was 71, when I was diagnosed with an aggressive and incurable rare head cancer. A miracle happened and I had experimental radiation. The radiologist said that I had a good chance of dying from the radiation-I knew that I had a good chance of dying from the cancer, so I figured that I didn't have anything to lose.

I'm 76 now, and I'm in a survivorship program. I'm also cancer free. I'm certainly not a ball of fire-I sleep a lot, but I painted my bathroom byself-the family took of to Texas-so I was left to my own devices, and nobody was here to try to do it--

For Mother's Day, I picked up a young coonhound. This is his 5th home, so it's taking some extra work. The Millennials left a flip flop with a tack in it. Jax swallowed the tack, and I got him to the vet where they used an endoscope to get the tack out. I try to watch him and the Millennials.

Hello and welcome, we are glad you found us. Please feel free to join in the conversations. Here is a link to our cancer dx page for your type of cancer. Take a look at it to get you started on some information. You will notice at the bottom of that page 4 of our active users who have had that journey already, you may wish to contact them for their experience and wisdom. Also, I encourage you to go to the questions page now by clicking on the questions tab at the top of the page and post what is the most pressing issue you have right now. This will introduce you to the community and get you started on the help you need right now.

https://www.whatnext.com/conditions/cancer/breast-cancer

There are also subtypes listed on this page to narrow down the type of cancer to match your dx.

Also, if you can take a few minutes and fill in some details of your journey so far, it will help others as they try to answer questions for you, it also helps others as they search through the data base to find someone like themselves. Confirming your email will allow you to receive updates and notices from the site when someone answers your questions or writes on your wall.

Thanks for being with us and let me know if I can help you find any information on the site. After you have an opportunity to look the site over and see what great things there are here, we encourage you to invite your friends, family or anyone you know that may be helped by the connections on WhatNext to join the site also. Just click this link to invite them to join. http://www.whatnext.com/recruit-a-friend

Follow Us on Twitter Click Here =>http://bit.ly/XExkce
Find Us on Facebook Click Here =>http://on.fb.me/zjBAPl
Our Pinterest Page with Resources=>http://bit.ly/12qVtEs
Our Help Page with instructions for the site->http://bit.ly/1aR5165
GregP 3X Survivor
Team WhatNext Community Mgr

welcome to WhatNext. I'm sorry you needed to find us, but now that you are here you will find the greatest bunch of supportive people whose combined knowledge is awesome. We can answer your questions, hear you vent and celebrate good news with you.

I see you have begun exploring our site and look forward to learning more about you and your journey.

Welcome to the WhatNext family! The WhatNext family is made up of people like you who are looking for help or looking to help others. To help you along your journey the WhatNext family has put together a Beginner's Guide to Cancer that I highly recommend you check-out here: http://bit.ly/10BQKCi. Also, please do not hesitate to reach out to others or ask for help.

Wishing you the best.

David
Founder, WhatNexter