New case

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saltygirl
Posts: 164
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

New case

Postby saltygirl » Fri Sep 16, 2022 10:15 pm

I have been following this young sweet woman’s story on YouTube. She has t4 tumor involving uterus and bladder. She has had a year of chemo. Finally was suppose to have a surgery. But her surgeon is giving her the options to wait for 6 weeks. Her latest pet scan is negative. But can she really be cured without a surgery? Why is the surgeon waiting for 6 weeks? It seems that the surgery would be very radical. The surgeon claims to wait and see… wait for what? I am confused about the whole situation. She is in Uk.
Stage 4, distant lymph nodes May 2020, braf/kras mutations
11 folfoxiri
Intense radiation 1 week on distant lymph nodes
Surgery, hysterectomy, colon resection, distant lymph nodes resection
Complete pathological response to chemo.
NED 2021
NED 2022
NED 2023

Rock_Robster
Posts: 1027
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: New case

Postby Rock_Robster » Sat Sep 17, 2022 12:06 am

I don’t know the specifics of her case but I’d say it’s very common to wait 4-6 weeks after chemo before doing any surgery, to ensure that healing won’t be impaired and the immune system can recover. I agree that the chance of a chemo-only “cure” is very low, but a complete response to neoadjuvant chemo is a great start!
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev
3/24 VAXINIA (CF33 + hNIS) trial

saltygirl
Posts: 164
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: New case

Postby saltygirl » Sat Sep 17, 2022 6:18 am

Thank you. She already waited a month after last chemo treatment. This is additional 6 weeks. It seems that the surgeon is giving her a choice to have the radical surgery now. Or wait 6 weeks. But I don’t understand to wait for what? He is talking about if metastasis show up somewhere else and quality of life etc. I have a feeling he is thinking that we she already has a spread, the radical surgery would not be indicated. But on the other hand. What if she doesn’t have any spread but there are still cancer cells at the original side. That could be removed by surgery now. She doesn’t understand her situation. Doesn’t ask the hard questions. Sweet young woman.
Stage 4, distant lymph nodes May 2020, braf/kras mutations
11 folfoxiri
Intense radiation 1 week on distant lymph nodes
Surgery, hysterectomy, colon resection, distant lymph nodes resection
Complete pathological response to chemo.
NED 2021
NED 2022
NED 2023

rp1954
Posts: 1853
Joined: Mon Jun 13, 2011 1:13 am

chemo-surgery waiting periods, or sometimes, not waiting

Postby rp1954 » Tue Sep 27, 2022 4:00 am

saltygirl wrote:...She has t4 tumor involving uterus and bladder. She has had a year of chemo. Finally was suppose to have a surgery. But her surgeon is giving her the options to wait for 6 weeks. Her latest pet scan is negative. But can she really be cured without a surgery? Why is the surgeon waiting for 6 weeks? It seems that the surgery would be very radical. The surgeon claims to wait and see… wait for what? I am confused about the whole situation. She is in UK.

Curative surgery is the usual goal for patients accepted for surgery. With extra tricks, starting with targeted cimetidine, the Life Extension type extras, IV vitamin C, and ADAPT+++, I would say a series of locally/nearly curative surgeries is feasible for multiple sites on "hopelessly metastatic patients", that are usually not considered operable by ordinary surgery departments.

Usually, for colorectal patients, 6 weeks standoff before/after surgery is prescribed because of Avastin (bevacizumab) added to chemo for metastatic CRC, before or after, respectively. Without Avastin and maybe some of the other mabs, 2-3-4 weeks are common in various locales, depending on the country, chemo and patient condition.

After a year of Folfox/Folfori + Avastin that patient is likely a beat up patient that needs some weeks for recovery depending on how max'd out they were.

There are published examples of 5FU chemo, mostly in Japan, where chemo was done right before, during (!), or after successful surgery with decent patients and good results.

Just for everybody's education, we substituted other less toxic materials for oxi-, iri- and Avastin to fight mCRC with a milder, daily oral chemo, analogous to ADAPT+++. For the 2nd surgery we began dialing back some things e.g. aspirin 7 days before surgery and did the last, bigger chemo dose with 200 mg of oral UFT (oral 5FU prodrug) along with IV vitamin C, 24 hr before surgery (per NPO requirement). Our surgeon even allowed pre-op cimetidine orally instead of the now usually promoted proton pump inhibitors for surgery. When the surgery was a success, with no complications, IV vitamin C started several hours after recovery, and a night's sleep, my wife restarted her TID oral chemo package at 24 hrs post-op. For both surgeries, the surgeons especially prescribed post op Celebrex.

With Xeloda, which has a longer metabolic cascade, or some other surgery sites, I'd wait a little longer.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

saltygirl
Posts: 164
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: New case

Postby saltygirl » Tue Sep 27, 2022 10:16 am

Thank you so much! I am so happy for your wife doing this well. You have been an amazing support for her. My impression is that this surgeon in the UK has given her the option doing surgery now or wait and see. They will revalue in 6 weeks. I am thinking I would choose the possible curative surgery now. She chose to wait. She is young. And big surgery seems scary of course. But I wonder what does the surgeon think about the wait and see option… why?
Stage 4, distant lymph nodes May 2020, braf/kras mutations
11 folfoxiri
Intense radiation 1 week on distant lymph nodes
Surgery, hysterectomy, colon resection, distant lymph nodes resection
Complete pathological response to chemo.
NED 2021
NED 2022
NED 2023

rp1954
Posts: 1853
Joined: Mon Jun 13, 2011 1:13 am

Re: New case

Postby rp1954 » Thu Sep 29, 2022 10:57 pm

saltygirl wrote:Thank you so much! I am so happy for your wife doing this well. You have been an amazing support for her. My impression is that this surgeon in the UK has given her the option doing surgery now or wait and see. They will revalue in 6 weeks. I am thinking I would choose the possible curative surgery now. She chose to wait. She is young. And big surgery seems scary of course. But I wonder what does the surgeon think about the wait and see option… why?


We can only speculate. Sometimes three different dr opinions yields three different sets of recommendations on mundane stuff. [ask my long injured/arthritic knee...]

Some possibilities
1. maybe more recovery from chemo - organs, surgical suitability, and bloodwork
although after heavy chemo, various bloodwork panels are often distorted up to a year or so
2. more time for external tests (blood work and scans)
3. more time for internal changes to show suspicious and (pre)cancerous tissues during surgery, for a more thorough job - visually, palpabally and scanning.

The down side in some cases is "too late", where they stop, or don't start.
For this possibility, we used more tests and more mild chemistries in the mean time.
In several areas, blood tests from 1-5 years earlier already told me an answer or helped form an answer later.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

saltygirl
Posts: 164
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: New case

Postby saltygirl » Fri Sep 30, 2022 8:04 am

I am worried for her. I feel that her surgeon might think that cancer has already spread. And such an extensive surgery might not be indicated. She has to have pelvic extraction. As of now her pet scan is clear. She doesn’t understand that surgery is her possible chance of cure. Yes, there are miracle cases where chemo cured the cancer. But it’s unlikely.
Stage 4, distant lymph nodes May 2020, braf/kras mutations
11 folfoxiri
Intense radiation 1 week on distant lymph nodes
Surgery, hysterectomy, colon resection, distant lymph nodes resection
Complete pathological response to chemo.
NED 2021
NED 2022
NED 2023

rp1954
Posts: 1853
Joined: Mon Jun 13, 2011 1:13 am

Re: New case

Postby rp1954 » Fri Sep 30, 2022 11:50 am

saltygirl wrote: And such an extensive surgery might not be indicated or "it's inoperable". She has to have pelvic extraction.

The usual surgical thinking is to get everything at once or a quick two step, sometimes "(much) more, just to be sure".

One extensive surgery (for externation?) might be too much. Our approach was to "chip" (a hopefully curative local surgery) and continuously treat with more (and more) chemistry but less patient toxicity, to stop, erode or slow metastasis. As many chemo-surgery cycles as needed. In our case, we were able to generate immunochemical assaults with chemistry improvements to dissolve or resolve stuff instead of potential third/fourth surgeries.

One patient on one the other forums had recurring mets but on surgery #7 she took cimetidine (vitamin D3 and celebrex too?) and didn't recur.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

saltygirl
Posts: 164
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: New case

Postby saltygirl » Fri Sep 30, 2022 5:44 pm

Good to know. Your wife’s case is very exciting. You truly seem like an amazing husband. I had distant few lymph nodes. Had chemo 10 treatments folfoxiri. Had surgery. And full pathological response. It has been almost 2 years from the surgery. But CT is coming up next month. Stress is building up. I have learnt to live in a moment. I am actually modeling next week. Yes, there are models in 40:-) I am in a best shape of my life. Working out daily, working, living my life. At least I got my kids to college age.
Stage 4, distant lymph nodes May 2020, braf/kras mutations
11 folfoxiri
Intense radiation 1 week on distant lymph nodes
Surgery, hysterectomy, colon resection, distant lymph nodes resection
Complete pathological response to chemo.
NED 2021
NED 2022
NED 2023


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