June 29, 2014 at 6:24 pm #78730gavinModerator
Brilliant news and I am over the moon for you!!! I’ll try and do Lainy’s cartwheels for you to celebrate!! So love hearing how things are going for you and this is great to hear! Time to enjoy your summer and yes, you give hope to so so many people out there!
GavinJune 29, 2014 at 4:21 pm #78729
Melinda…I too am overjoyed. Same question as that what Jason asked: sequencing, but to which extent?
MarionJune 29, 2014 at 3:22 pm #78728lainyMember
YIPPEE, Melinda! I am thrilled for you and if I could would do 100 cart wheels. Instead I will just go to the moon and back! Love, love, love the stories of hope. Keep up the good work, have fun and enjoy your summer!June 29, 2014 at 2:15 pm #78727
That is fantastic news. Thank you for letting us know how it is going. I can’t tell you how helpful it is (to me anyway) hearing stories like yours.
If I am reading you right, when you next go back to NIH, you will have been 12 months without treatment? Amazing. Congrats!
One question if you have a moment: Do you know what the NIH is looking for when they look at the genetic sequencing? If it is something exotic, people can try and make sure it is covered when they get a sequencing done.
All the best,
JasonJune 29, 2014 at 8:13 am #78726mbachiniModerator
I returned from NIH this week….8 months post treatment. I received wonderful news! I continue to have shrinkage in tumors, somewhere around a total of 42% overall since treatment. The other good news was that I had a PET scan for the first time since diagnosis of mets to lungs and it showed no evidence of metabolic activity in the tumors in my liver. I don’t have to return to NIH for about 4 months, which seems like a lifetime to me! I feel so happy and so very blessed!
They told me that they were overwhelmed with calls after the articles came out, something like 400 calls in a couple of days! I also have been contacted via email, facebook, caringbridge and good old fashioned home phone….not hard to find my last name listed in the phone book….by so, so, many people! It has been an amazing journey. People just want HOPE! I even had the opportunity to meet some fellow fighters while I was back east this week.
I hate hearing when patients are not accepted into this trial. It breaks my heart, and while I know it may not work for everyone, it saddens me that people who are out of options can’t give it a try. I do know that the scientists are working extremely hard to perfect this treatment and are so very hopeful for other treatments coming up. I encourage anyone interested to still give NIH a call. I also know that it is a time saver to have the tumor sequencing already done, the scientist that works on my cells said that alone saves a month worth of work on his part, and we all know how important time is. I want to help in any way I can so please don’t hesitate to contact me. I believe that we will be seeing some good results in the next couple of months and I can’t wait to have more success stories!
All my thoughts, prayers and love to you all,
MelindaMay 9, 2014 at 3:54 pm #78724kris00jMember
I hope everyone got to read the article on Melinda! Wonderful!!
please use this link for the article:
http://www.nytimes.com/2014/05/09/health/doctors-use-patients-immune-cells-to-shrink-cancer-tumors.html?hp&_r=1February 8, 2014 at 8:27 am #78723
Melinda….we are trying our best (with Jason’s help and that of others) to organize this discussion board in a more user friendly version. The Sticky will allow members to continue posting their treatment or other relevant information in one particular thread. I can’t wait to see your update listed right here.
A tidal wave of good wishes is heading your way.
MarionFebruary 8, 2014 at 7:07 am #78722gavinModerator
Good luck with the checkup and results Melinda, my fingers are crossed for you and I so hope for the best possible results for you. Please let us know how everything goes.
GavinFebruary 8, 2014 at 6:20 am #78721mbachiniModerator
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!
MelindaFebruary 1, 2014 at 7:16 am #78720
Thanks much, Jason. This is a wonderful way of keeping threads organized. I think we are on to something with adding Sticky’s to postings. This will allow people to update in their respective threads.
MarionFebruary 1, 2014 at 2:23 am #78719
Hey Marion / Melinda,
Here is the timeline I put together for the wiki (leaving out the Jan. 2014 info in this thread):
It has been a very long time since I have posted to this site. I was diagnosed with Intrahepatic CC on 12-1-99. I had a 2/3rds liver resection only to find mets to my lungs 3 months post surgery. I have done chemo for past 2 yrs. Started with Gem/Cis combo which was very toxic to me, tried Gem alone with no success and then did Avastin until the toxicity build up again. I have numerous mets to my lungs and about 6 or so 3-6cm tumors on my liver again.
I have always kept my eyes open for clinical trials but found it very hard to get excited over more chemo. I believe that my discovering this trial at National Institue of Health was meant to be. It is called the GI-TIL trial. It is a tumor infiltrating lymphocyte immunotherapy trial. They have been using it successfully for melanoma for quite some time and have just recently opened it up for GI cancers. I am the 9th person to try it, but the first with CC. The first 8 people were unsuccessful.
I met with the research team in March and was accepted into this trial. There is certain criteria and I can’t remember all of it, but you had to have been off chemo for a month and are showing signs of progression. The information is online and you can call a nurse specialist to get all the details.
My husband and I returned to Bethesda, MD about 2 weeks later and I had 4 tumors from my left lung removed. The docs then take the lymphocytes from these tumors and grow them in a lab for about 30 days. We then returned again for a 3 week hospital stay. The first week they give you 2 chemo drugs, not to treat the cancer but to suppress your immune system. The first drug was rough and the second was not as bad. The second week they infused 42.6 billion of my lymphocytes they had grown back into me!! They also give you a drug called IL2 at the same time for up to 15 doses or as many as you can handle. I only made it to 4 doses. The 3rd week was recovering my blood counts enough to go home.
I just had my 3rd monthly checkup and I have had a total of 23% overall shrinkage since this treatment. They consider 30% successful, so I am hoping to hit that mark next month! This is a one time treatment, and all I know is everyday that I don’t have to do chemo is a GREAT day!
I have been leary to share with you all in case it didn’t work, but then I thought it was worth sharing and let you all check into it as you seem fit.
I am almost 44 yrs old, married and have 6 children. It was worth it for me to try this treatment. The 3 weeks in the hospital was hard, but about a week or so after I got home, I started to feel better than I had in years. A chronic cough I had disappeared, my energy level increased drastically and overall just better.
We live in Montana and the good thing about this trial is that it is a Federally funded trial so they paid for all the medical costs plus my travel airfare and give you $50/day towards expenses, which doesn’t cover much in that area, but was better than nothing. I also have a brother that lives 30 miles from the hospital so it all worked out well for us.
I just thought you should all know about it…..God Bless!!
I just returned home from my 4th checkup since my initial treatment in April on the GI-TIL trial at National Institute of Health. I have officially reached the partial response rate of 30.06% and am now considered a success and the first one to be successful!!!! I seem to be averaging about a 7% shrinkage rate on my tumors each month without any treatment other than the initial treatment in April. I feel amazing and am so happy this has been working! I just wanted to update with the news! God Bless…Melinda
I just returned from National Institute of Health where I am doing the TIL trial. My check up was great!! No new growth and some small shrinkage overall in my lungs and liver. The docs and scientists are excited with my results, not as much as I am though!! It has been 7 months since I have completed the treatment. I have had no further treatments or chemo of any kind and am still going in the right direction. I hope and pray that my healing continues and that the scientists can find a cure for all of us!!!! Working hard to do my part and thinking of all of you daily!!! Melinda
I returned last week from NIH with stable results. No change from scans done two months ago. I am happy with stable! I am even more happy that stable came without chemo!! They say as long as there is not growth – the cells are still doing their job. I go back in March for next checkup and will keep everyone posted.
I have really enjoyed talking with so many of you over the past few months, it has been great to put voices to names. It helps to share our stories, and I want to be able to help answer any questions that I can. My prayers are with each and everyone of you…stay strong, keep the faith and God Bless you!!
Lots of Love,
I just returned from my latest checkup out at NIH. It has been one year now since I have received this TIL treatment. Scans this month still showed no growth. Stable it is……since November. While I would sure love to hear the word shrinkage again….I am still feeling that this has been successful for me. Considering that I have not had any chemo or radiation or any treatment what so ever in the last year, I feel like I have to celebrate these results!
I feel extremely blessed to have had such an amazing year with my family. While the 3 week hospital stay for treatment was not fun, I would do it again in a heartbeat to get another year like this one! I don’t know what my future holds anymore than anyone else but for now I am happy with stable – I can definitely LIVE with stable!!!!!
God Bless you all!!!
I just returned from NIH this week. My scans showed minimal growth, like in 1-2 mm in only a couple of tumors in my lungs. Considering I have several tumors in both lungs and I think 4-6 in my liver…that have not grown, I am still happy with this news. We are just watching for now, I go back in the middle of August for next checkup. They have a formula for everything and won’t consider it progression of disease until a certain percentage of growth. At that time I could possibly repeat the treatment, depending on the consensus of the doctors, or look for a different trial.
I am still happy with the trial results for me, I only wish that it would work for someone else as well. There is still so much of the unknown. I know for me, not having to do chemo, gave me great quality of life this past year and amazing time with my family. I still don’t know what the future holds but I remain optimistic and hold on to my faith. Always thinking of you all, my fellow cc fighters….God Bless…..Melinda
JasonJanuary 31, 2014 at 2:38 am #78713
I also wanted to mention that Rick added a Sticky to your postings. Any further postings will appear in this string.
Jason and Melinda, should we add the older postings here as well?
MarionJanuary 30, 2014 at 11:52 pm #78714
Your treatment sounds very tough but also seems to be really helping keep the cancer at bay. That is awesome!
I went back and searched the forums to get your previous updates. I collected them into a timeline on a wikipage. I also added this latest update.
If anyone is interested in the older updates, they are here:
Thank you so much for communicating your clinical trial experience! Any information is so helpful to other patients.
I hope you continue to do so well, and please keep us up to date.
JasonJanuary 14, 2014 at 5:21 pm #78718willowMember
How exciting this is! Thank you for explaining the process. I am so impressed with your courage and willingness to be one only the pioneers of this kind of very exciting and promising treatment. I definitely will check out your caringbridge. All the best as you continue to heal! Ski on, girl!January 14, 2014 at 4:57 pm #78717darlaParticipant
Already posted on your other one and also checked out your Caring Bridge. Looking forward to good news after your check up.
Love & Hugs,
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