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by prayingforccr
Thu Sep 22, 2022 8:56 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Beginning TIL Therapy at NIH Next Week
Replies: 38
Views: 4710

Re: Beginning TIL Therapy at NIH Next Week

Opdivo/yervoy infusion 2 done. Return in three weeks for opdivo. Then opdivo/yervoy three weeks after that. Scans in about two months to determine whether it’s working (shrinking lesions) Will know whether the TILs are working in vitro in two weeks as there is a supply chain issue with the reagents.
by prayingforccr
Wed Sep 21, 2022 6:14 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Beginning TIL Therapy at NIH Next Week
Replies: 38
Views: 4710

Re: Beginning TIL Therapy at NIH Next Week

Follow up email: Dr D Will discuss ending treatment with Dr C on friday. I will almost certainly stop opdivo/yervoy after the fourth treatment then sit tight until progression if TILs seem to be effective in the lab. That makes the most sense to me. If the TILs arent effective, Ill probably stop tre...
by prayingforccr
Wed Sep 21, 2022 5:04 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Beginning TIL Therapy at NIH Next Week
Replies: 38
Views: 4710

Re: Beginning TIL Therapy at NIH Next Week

Just sent email (names redacted): https://clinicaltrials.gov/ct2/show/NCT01174121 I don’t recall a conversation about the treatment being contingent on a response in the lab prior to infusion. I definitely don’t remember discussing that we need to see progression whilst on the bridge treatment prior...
by prayingforccr
Wed Sep 21, 2022 4:04 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Beginning TIL Therapy at NIH Next Week
Replies: 38
Views: 4710

Re: Beginning TIL Therapy at NIH Next Week

I hope you manage to enjoy life in the meantime (easier said than done, I know...). How's the FL weather now? Are you still swimming daily? I pass the eye test. Am swimming daily and have been going to stretch classes twice a week which have really helped. Headed to ny tomorrow for fri infusion num...
by prayingforccr
Wed Sep 21, 2022 3:54 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: PET/CT tomorrow
Replies: 20
Views: 812

Re: PET/CT tomorrow

beach sunrise wrote:No No NO! Surgeon says PET CT is clear, watch and wait. WHAT!?! He did not set up appt with lung surgeon.
I will have to do this on my own. Appt with surgeon not scheduled til mid Oct.
I am beyond mad. I will not sit between the cracks to fall thru at some point.


Dr Christina Boyd
by prayingforccr
Wed Sep 21, 2022 3:53 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Beginning TIL Therapy at NIH Next Week
Replies: 38
Views: 4710

Re: Beginning TIL Therapy at NIH Next Week

Really messed up situation now. Why? If I understand correctly: * Current treatment works, no need for TIL -> cured * Current treatment does not work, TIL possible and works -> cured Of course there are all the "in between", which may not lead to a cure NOW but if QoL is good under curren...
by prayingforccr
Wed Sep 21, 2022 3:44 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Beginning TIL Therapy at NIH Next Week
Replies: 38
Views: 4710

Re: Beginning TIL Therapy at NIH Next Week

Goodness! Not sure what it all means but seems like you still have an option if the other doesn't work? I’ll know in about two weeks or so if TILs is even an option. If it is, then I do immunotherapy for up to two years until progression/regression or side effects become unbearable. If it isn’t, th...
by prayingforccr
Wed Sep 21, 2022 3:11 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Beginning TIL Therapy at NIH Next Week
Replies: 38
Views: 4710

Re: Beginning TIL Therapy at NIH Next Week

It is so hard to live with uncertainty! We all want to know what will happen and when, but unfortunately with cancer one has to do their best to live with a lot of uncertainty... When you say they will not perform the infusion/procedure unless the cancer is progressing , is it something new to you?...
by prayingforccr
Wed Sep 21, 2022 11:51 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Beginning TIL Therapy at NIH Next Week
Replies: 38
Views: 4710

Re: Beginning TIL Therapy at NIH Next Week

So…………..some new curve balls. About 50% of the time the harvested TILs do not react to, or the reaction to the tumor cells in the lab is too weak, and this means the procedure would be ineffective, and hence, not pursued. We will know in two weeks. Additionally, they will not perform the infusion/pr...
by prayingforccr
Wed Sep 21, 2022 9:56 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Update after 2nd opinion discussion
Replies: 24
Views: 1605

Re: Update after 2nd opinion discussion

Reading this brought me very close to tears, riki. The only thing I can add would be to share how I gained a lot of my weight back from 135 lbs. Each day I would have a banana cocoa peanut butter blended smoothie: 1 large banana, peeled, sliced, and frozen 3 Tablespoons unsweetened cocoa powder 6 oz...
by prayingforccr
Tue Sep 20, 2022 3:55 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: PET/CT tomorrow
Replies: 20
Views: 812

Re: PET/CT tomorrow

So far so good on chemo 7 days a week. Bloodwork isn't suffering to much in the critical areas. Some panels I have to work on a little differently based on last draw. If I had not slipped on 2-3 blood draws due to personal things I would have caught the off levels. It is what it is! YES, curative s...
by prayingforccr
Sat Sep 17, 2022 3:57 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: PET/CT tomorrow
Replies: 20
Views: 812

Re: PET/CT tomorrow

In the same vein as roadrunner, my first thought was “no growth”?

Nothing to do but continue as you were.

But personally, if this was all the evidence of disease in my body that remained, and I could have them removed via vats, ablation or sbrt, then I would.
by prayingforccr
Sat Sep 17, 2022 2:58 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: When it rains...
Replies: 13
Views: 575

Re: When it rains...

You’re a champion, Claudine.

I’m sorry about the updated situation.
by prayingforccr
Sat Sep 17, 2022 12:07 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: PET/CT tomorrow
Replies: 20
Views: 812

Re: PET/CT tomorrow

For what it’s worth, I had a vats lung resection about a month ago to remove two lesions from which they will extract and grow the TILs

It was no big deal.

Nothing to be afraid of at all.
by prayingforccr
Fri Sep 16, 2022 9:11 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Were you worried about losing your job at diagnosis?
Replies: 10
Views: 1347

Re: Were you worried about losing your job at diagnosis?

This is/was me: https://www.wyzant.com/Tutors/FL/Jupiter/8377061/ Ive done very, very, very little tutoring since dx and I do miss it. Not for the money. I miss being relevant and helping people. Ive stayed afloat using lessons learned in a past life. But I am terribly lonely and not contributing an...

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