Gymmom

Hi Gymmom - Clinical trial did not pan out. Will start CAR-T (immunotherapy) at Stanford on Wednesday. I hope to be home by Christmas. Will have my laptop with me and will let you know how it goes. Thanks for all your advice. JudithJ

Hi Gymmom - It's been a long, strange journey. I was admitted to a clinical trial at City of Hope in LA. Went through all the evaluations/tests etc and, 48 hours before the start...they told me I was disqualified - tumors not large enough.
More salvage chemo. Now, I have been referred by my health plan to Stanford for a CAR-T treatment - so finally, I am feeling more hopeful. Thank you for your good wishes! Judith J

Hello Gymmom, thanks for the reply. I'm not good at this phone technology. ..lol...I'm on the treatment as your's ... R-Epoch. Doing well resporesponding well to treatment. I'm on my 4th round be done tomorrow. I rally have been good my faith has gotten me though this ordeal.God is good and so real. Thanks for replying.

Thank you for being such a supportive person

gymmom - I have tried to find you on Facebook but no go. I must be a Facebook nerd. Did try though, thanks for all your comments and hope

Hi Gymmom - Just wanted to thank you again for your answers to my questions. Will start R-Epoch this coming Monday and all of it - especially the spinal tap - does not seem so scary. Thanks

Gymmom - thank you so much for your reply. Just going in this morning for first visit with oncologist. Mine is diffuse large B cell also. Will know more about stage, treatment etc then. I'm sure I'll have questions afterwards but in the meantime - thank you for your encouraging words!

Hi, my husband has this diagnosis and is undergoing treatment. He is very sick and I need help as his primary caregiver. I hope that you are doing well.

Hey Gymmom, Yes, I live about 30 miles from Brighton in a small town just south of Port Huron, MI called St. Clair. When I look out my window across the water I see Canada. You are right, Michigan is such a beautiful state. We are so very lucky to be surrounded by the gorgeous Great Lakes. Our little town is such a beautiful place, people come from all over to sit in our waterfront park and watch as the huge 1000' freighters go up and down the St. Clair River as they make their way through the Great Lakes and sometimes out to sea. I hope your daughter and her family get a chance to visit sometime.

Hello GYMMOM,
I am a fellow survivor of stage IV NHL..7 years remission. Just started following you. Have a great day.

Hi gymmom
Dont worry about the Minni- issue..I didn't notice..LOL How are you doing?x Mimmi

Thanks, wishing you the best too for your scan in September

HI there GYMMOM..Yes, we are DLBCL twins.. I have metastases in left hip joint and right iliac crest and sternum.....6 sessions of chemo as you have seen...I get the odd pain and stiffness and sometimes I think the cancer is back and I get so so worried. My doc said for me not to worry and get on with my life. I know that since the metastases are in the bones there are high risk of relapsing..I know this..but I can't go there..I must stay positive...I didn't have any radiotherapy thankfully. I also had he injections in to my spinal fluid. common, I believe when you have DLBCL.....
When I had my 2 post chemo PET/ CT scans they said my bones in the hip joint and iliac crest and sternum were remodelling, ( bones trying to get back to normal, I guess), so this showed up as low grade uptake on PET scan...I worried but the team said the remodelling would show up as a low grade uptake..I guess I have to trust that....I have no choice..Ciao ciao..Write to me if you want if you want to chat more...Mimmi

Hi again, I was mean to ask you if you had pET-CT scans after you ended your last chemo in Oct last year? If so, as you too had some Lymphoma migrating to tail bone and ilic crest, have a reading of small low uptake in the pet readings- due to remodelling of the bones? Yes, I am in London, UK. Mimmi

Hi, Gymmom -- Thank you so much for your encouragement! Well, from the scary to the totally bizarre -- my cancer did something so weird, even the onco docs can't believe it's even possible (and that I am still walking around, though they didn't spell that out.) The SLL deleted not just one, but 2 chromosomes and 1 gene. One chromosome is quite common, so is the gene. Not all 3! As best I understand it, the indolent SLL somehow managed to delete all 3, turning off something immuno-protective in my DNA, thus opening the gateway for the SLL to turn into a highly unusual, fiercely aggressive -- and until 2 years ago, no-treatment version of itself. But as it turns out, 2 years ago , Ibrutinib arrived on the scene and it turns off the signals to tell cancer cells to grow and divide, and that will hold the cancer in check for a year or two; then stem cell or bone marrow transplant. So, a happy reprieve. Also, the drug is in pill form, so no time in an infusion center, though there can be some pretty nasty side effects to handle. Nevertheless, I was so relieved when my oncodoc told me, I couldn't stop laughing -- and the idea I'm missing that much genetic material has totally blown my mind. Nevertheless, in between the tests and scans and bruising and trying desperately to find rides (I live alone, no kids or close fam) -- I had to sort this thing out spiritually -- and I found an answer I'd been looking for all my life. So....not bad for 3 weeks' work. Thank God I do not need any more spiritual revelations any time soon!!!! Let me know if you ever need a listener -- your presence, just asking and reassuring, meant more than you know. Deb

Hello and welcome, we are happy to have you with 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.

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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.

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Welcome to the group. Personally speaking, the wonderful people on this site have helped me through the tough times. Reading the trials and triumphant spirit of others gave me the courage and will to fight. I don't believe there is a substitute for the education I received from the experiences of those in the trenches. Thanks to all who share. God bless and best of luck to you.

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.

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