Forum Replies Created
June 29, 2014 at 5:31 am in reply to: congressional and regulatory advocacy – you can do it too #83379
Thank you Marion….this was just the information I was looking for! Melinda
Gavin…I am glad you were able to see my tulips. Last evening after the interview we had an amazing hail storm and they and all my other plants were destroyed!!
I am so excited that this is traveling the globe! I hope that more facilities start doing more research and clinical trials. I want the headlines to say “Success for Millions of Patients”! It is a little depressing when I read or hear the comment of “remember this is just one patient”…..I understand that I am just one patient…..for now….but I also understand that there has to be a first patient and I believe wholeheartedly that I am the first of many!!!
Gavin thanks for posting all these links….I so enjoy reading them and adding them to my scrapbook!!
Willow I hope the docs get the attention they so deserve….and continued funding for more research!!
Thanks Gavin! I have not seen these articles till now….so happy they are getting out there!…Melinda
Hi all….I responded by email to you Marion….gone all day to volleyball tournaments, so I just got it out. I would be happy to do anything I can to spread this research news!! Please just tell me what I can do and I will do it! I am so happy to get the message out there!! I can’t believe how far it has spread around the world!!!! So Happy! I want to keep this movement going!
Hugs to all…Melinda
Wow that is great news Gavin! …thank you to everyone! I just want to get this out there in as many ways possible!
Thanks you guys for posting these…I am so glad they showed the CT of the tumor reduction! Every time I see it…I get goose bumps! Thanks for all the support!
Jason that is so awesome! Thank you so much!
Marion….does the sticky mean that I should update on this post with new results? I am headed back on the 18th for next checkup and will have the results the afternoon of the 20th.
Thanks everyone for the good wishes……all my thoughts and prayers!
Thank you so much everyone!
Thank you everyone!! I so deeply appreciate the well wishes:)…and Marion they took 3 tumors from my right lung this time to harvest the tumor infiltrating lymphocytes (TIL) and grow them in the lab.
Thanks to all of you!
Pamela and Lisa,
I am currently in a clinical trial at NIH. The treatment was an infusion of my lymphocytes that were taken from my tumors and grown in a lab. In theory, these lymphocytes should attack and kill the tumors. So far I have had success with my treatment, and am praying for continued success.
I emailed you from your forum information….looking forward to hearing from you!!
I am not sure of the exact types of GI cancers the eight before me had. All I know is that I am the first and so far the only Cholangio participant. I believe the others had received chemo, I think that is one of the requirements of the protocol. The trial information is listed at the following link and the protocol ID is 100166
or you can search GI-TIL
Please let me know if you have any more questions.
I am from Billings and was diagnosed last December. Nice to meet a fellow Montanan, but not with these circumstances!! I had surgery last year and did 6 months of chemo. I recently took a break from chemo and am due to start back up again on the 5th. Please let me know how your mom is doing and I will keep in touch with any new news down here…take care.
Your story is almost identical to mine…at least the beginning. I am a 42 y/o female diagnosed 12-1-09 and I am a paramedic and nursing student…graduate next month. My symptoms were the same…my thoughts were also gallbladder. Had my ultrasound done and found a 10cm tumor in my liver. Things went very fast for me as well…20 days from Dx to surgery. Successful resection of 2/3rds of my liver…clean margins and no lymph node involvement. My Oncologist didn’t have me do chemo after surgery..I am not sure why. My first 3 month scan showed spots on my lungs..biopsy confirmed the metastisis. I went to Rochester for second opionion on my options but they recommended the same treatment of Gemzar and Cisplatinin. I have been doing that regimen since June with no growth and no shrinkage of tumors…stable disease. I started off well with the chemo but in the last month or so have really had some problems. I had some steroid psychosis with the decadron, so I stopped it. Since then the nausea has been horrible even with all the other antiemetics. The cisplatinin has been hard on me…numbness and tingling in my hands and feet, ringing in my ears, and severe nausea. I do the Gem/Cis on day 1 and just the Gem on day 8…and rest on the 3rd week. Twice I have only had the first week because of low WBC and/or platelets. I have just chosen to take a break for a month or at least throught the holidays. I am having some chemo anxiety issues and not wanting to feel so sick. My doc says I can have a short break and my husband (who is a RN as well) understands my decision. I still have no lymph node involvement and my liver is still clear, stage 4 regardless! I was hoping to find someone with my scenario as well. I hope your chemo goes well and I will look forward to chatting…congrats on your surgery. Take care…..Melinda
I am new to the site, but I have enjoyed all your posts. I admire your strength, courage and optimism! Hang in there and keep up your positive attitude….praying for you!