Next steps after chemo: reversal, supplements

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Green Tea
Posts: 421
Joined: Mon Oct 24, 2016 10:48 am

Re: Next steps after chemotherapy

Postby Green Tea » Mon Jun 14, 2021 11:44 pm

Sunnycd wrote:
What is the CPT code of the expected surgery: CPT 44626 or CPT 44625 - it can make a difference in long-term quality of life (QOL) considerations.


I understand the difference, but how would that make a difference in QOL? Instinctively, I know 44625 would be neater and less complicated, since colon to colon vs. colon to rectum.

What method will be used to connect the descending colon to the rectal stump? Hand stitches? Stapler? What kind of stapler? Can the stapler cause damage and injury to nearby organs while it is being used?


Most articles I read suggest that staplers are preferable and safer to hand stitching. Is this what you find?

I think 44625 would be better because more of the rectum would be retained, but this is only a guess. I'm not sure.

There are different kinds of staplers. If a trans-anal stapler is used, it might cause bruising or tearing of tissues while it is being jockeyed into position, like damage to sphincter muscles. But again, this is only a guess. But trans-anal staplers might not be used if they are not long enough for connecting the end of a 20 cm rectal stump. Other staplers have other kinds of problems, I suspect. Staplers are generally single-fire, single-use devices that cannot be cleaned and used by another patient, I think. After my ileostomy reversal I was given my stapler because I had paid for it and it could not be used again. It was a huge contraption and I couldn't understand how such a big thing could be manipulated properly in a small pelvic space. I think that current stapling procedures have less than 5% failure rate, but I'm not sure. Only the surgeons would know how much trouble they have in getting a stapler to work properly.

Sunnycd
Posts: 61
Joined: Fri Feb 26, 2021 10:36 am

Re: Next steps after chemotherapy

Postby Sunnycd » Tue Jun 15, 2021 12:50 am

Thank you, GreenTea!
I made the list, checked it twice, prioritized, rewrote neatly in my notebook and I am ready for tomorrow. Thank you for all your help. I didn’t realize you had a reversal too. My wish is to be able to recover well, so I won’t be so afraid to take a plane and have an accident, or have an obstruction or something during a trip. And I talk about going on trips because I realized during this time that I really never travelled much with my kids (or not as much as I wish we had), and I regret that deeply. I’ve been telling my 16 year old that I soon as mama is good, we will go somewhere…and that has been the end goal I took with me during my chemo treatments…
DX Feb. ‘21 CC IIB @ 51
Jan. ‘21 ER surgery, temp. colostomy
Sigmoid, adernocarcinoma
T4aN0MX, G2
0/24 lymph nodes
LVI: indefinite
PNI: not identified
Margins: clear
March ‘21 started 4 rounds of CAPOX
06/17/21 last day of CAPOX
06/25/21 CT scan clear
CEA: @ dx 4, post surgery 1.9, post chemo: 2.9
07/14/21 colostomy reversal

Sunnycd
Posts: 61
Joined: Fri Feb 26, 2021 10:36 am

Re: Next steps after chemotherapy

Postby Sunnycd » Wed Jun 16, 2021 9:19 am

One day to go for my last Xeloda pills. Next week will be busy and I need all positive thoughts sent my way! CT scans next Thursday, visit with my oncologist on Friday, 6/25. I meet with my original surgeon on Tuesday to discuss the reversal.
I met with MSK’s surgeon for a second opinion yesterday and was deflated. He said that it will be an open surgery because the original surgery was a big one, so he can’t do it laparoscopically. He said I need at least 2 clean scans for a reversal, so he would set an appt in 6 months to check and then schedule a surgery (we are talking 6-8 MONTHS now, instead of 6-8 weeks, which is what I was aiming for). I asked why would we wait so long, I’d like a reversal within a year, as opposed to 1 plus years and he kept saying that we need to be sure the cancer has not spread, that I’m cancer free, over and over…which now is filling me with anxiety. Optimistically, I’m thinking he said all this to talk me out of having a surgery with him, as I know surgeons don’t like to do reversals if they were not the original surgeon. Let’s hope that’s it, and now I can’t wait to met with my surgeon next Tuesday!
DX Feb. ‘21 CC IIB @ 51
Jan. ‘21 ER surgery, temp. colostomy
Sigmoid, adernocarcinoma
T4aN0MX, G2
0/24 lymph nodes
LVI: indefinite
PNI: not identified
Margins: clear
March ‘21 started 4 rounds of CAPOX
06/17/21 last day of CAPOX
06/25/21 CT scan clear
CEA: @ dx 4, post surgery 1.9, post chemo: 2.9
07/14/21 colostomy reversal

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Green Tea
Posts: 421
Joined: Mon Oct 24, 2016 10:48 am

Re: Next steps after chemotherapy

Postby Green Tea » Wed Jun 16, 2021 1:07 pm

Sunnycd wrote:One day to go for my last Xeloda pills. Next week will be busy and I need all positive thoughts sent my way! CT scans next Thursday, visit with my oncologist on Friday, 6/25. I meet with my original surgeon on Tuesday to discuss the reversal.
I met with MSK’s surgeon for a second opinion yesterday and was deflated. He said that it will be an open surgery because the original surgery was a big one, so he can’t do it laparoscopically. He said I need at least 2 clean scans for a reversal, so he would set an appt in 6 months to check and then schedule a surgery (we are talking 6-8 MONTHS now, instead of 6-8 weeks, which is what I was aiming for). I asked why would we wait so long, I’d like a reversal within a year, as opposed to 1 plus years and he kept saying that we need to be sure the cancer has not spread, that I’m cancer free, over and over…which now is filling me with anxiety. Optimistically, I’m thinking he said all this to talk me out of having a surgery with him, as I know surgeons don’t like to do reversals if they were not the original surgeon. Let’s hope that’s it, and now I can’t wait to met with my surgeon next Tuesday!

Sunnycd -

Thank you so much for taking the time to post an update. I can understand why you feel so deflated. Maybe now the best thing to do is to focus your attention on your upcoming meeting with your original surgeon next Tuesday and see what she has to say. She said earlier that she would explain everything when she sees you at the meeting, so if you just let her talk you will hear her side of the story, and if you then have any concerns you can follow up with your questions. By now you have done so much research on the topic that you should be able to follow everything she says.

She is a Board Certified colorectal surgeon, so she obviously knows what she's doing and of course she has her own "style" of doing surgery, so she would know best what has to be done to do a reversal on her initial Hartmann end-colostomy surgery.

So, next week we will be sending positive thoughts and prayers your way, hoping that you will be able to resolve the reversal issue once and for all, and hoping that your scan and meeting with the oncologist goes well, too.

If you need any more information or help, just post another message.

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Green Tea
Posts: 421
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Re: Next steps after chemotherapy

Postby Green Tea » Mon Jun 21, 2021 11:02 pm

Sunnycd wrote:... I need all positive thoughts sent my way! .... I meet with my original surgeon on Tuesday to discuss the reversal...

Sending positive thoughts your way today...

Sunnycd
Posts: 61
Joined: Fri Feb 26, 2021 10:36 am

Re: Next steps after chemotherapy

Postby Sunnycd » Tue Jun 22, 2021 11:49 pm

Thank you for sending those positive thoughts my way - I think it worked! My surgeon said she can schedule my reversal in the next 3 weeks (4 weeks post chemo), contingent on my ct scan this Thursday and clearance from my PCP, which is currently my rheumatologist. I have to check with my rheumatologist if he’s ok with that. I do have an appointment with the doctor I am planning to have as my primary, but it’s in mid July.

She explained that not only my rectum is intact, but I have enough colon left to be very close to how I was before surgery. I healed very well, she knows my insides and how she left it, so the surgery will be laparoscopic, and it should take 2 hours. She will also see if I developed scar tissue, and will try to take it out as much as she can if she sees it. She estimates I will need to stay in the hospital for 2 days, and will request a private room. The wound will heal open but I won’t have to pack with gauze because it will be small and will only require a band aid. As long as I am not taking steroids, no problem with lupus and plaquinil. So, tentatively, I have colonoscopy on 7/13, surgery on 7/14, which also is great because I need to do only one prep.

I am so happy with the news so far! Now, on to Thursday CT scan and Friday oncologist appointment!
DX Feb. ‘21 CC IIB @ 51
Jan. ‘21 ER surgery, temp. colostomy
Sigmoid, adernocarcinoma
T4aN0MX, G2
0/24 lymph nodes
LVI: indefinite
PNI: not identified
Margins: clear
March ‘21 started 4 rounds of CAPOX
06/17/21 last day of CAPOX
06/25/21 CT scan clear
CEA: @ dx 4, post surgery 1.9, post chemo: 2.9
07/14/21 colostomy reversal

Claudine
Posts: 544
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Next steps after chemotherapy

Postby Claudine » Wed Jun 23, 2021 10:37 am

so the surgery will be laparoscopic


Oh that's great news! Yes recovery from laparoscopic surgery (regardless of what it's for) is so much easier and faster. Very happy for you :D
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: low 3.2, now 81.1
Scan 03/19: Multiple small lung nodules, now gone/calcified
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 09/17/2021: stable

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Green Tea
Posts: 421
Joined: Mon Oct 24, 2016 10:48 am

Re: Next steps after chemotherapy

Postby Green Tea » Wed Jun 23, 2021 11:01 pm

Sunnycd wrote:... So, tentatively, I have colonoscopy on 7/13, surgery on 7/14, which also is great because I need to do only one prep.

I am so happy with the news so far! Now, on to Thursday CT scan and Friday oncologist appointment!

Good luck with your CT scan today and your oncology appointment tomorrow. Will this be at the MSK Bergen facility?

About your colonoscopy prep and your surgery prep ... Did your surgeon give you written instructions to follow? The end-colostomy colonoscopy prep instructions and the Hartmann reversal procedure prep instructions are very specific and are not the same as the ordinary colonoscopy prep instructions and ordinary ileostomy reversal prep instructions.

If you don't have written instructions I could send you some from other hospitals so you at least have a reference point and have time to get extra supplies if needed for this type of prep.

During most of July, I will be away and without Internet access, so if there is some information you need now, please let me know soon.

Sunnycd
Posts: 61
Joined: Fri Feb 26, 2021 10:36 am

Re: Next steps after chemotherapy

Postby Sunnycd » Fri Jun 25, 2021 10:47 pm

My CT scan went well, nothing remarkable. There is still this “hazyness” at the site of the surgery that the MSK radiologist noted when reviewing the CT scan from 03/08 from the other hospital. At the time he said it was probable it was from surgery. It’s still there, but this time they wrote:
Impression:
1. Since March 8, 2021, unchanged mesenteric infiltration, possibly postoperative change, less likely carcinomatosis. No discrete peritoneal nodules.
2. No mestastases in the chest

She wanted me to share this with my surgeon, given the MSK surgeon wanted to wait for at least 6 months just in case this hazyness is cancer… I asked for the signatera test, but there is no way she will order as she is adamantly against it. What I don’t understand is, wouldn’t that test at least point that there might still be cancer and maybe point in direction of this so called hazyness area? Not sure why I have to wait 6-8 months on something that seems more likely to be from the open surgery. Anyway, I sent an email to my surgeon with the results just in case, but my inclination is just to go ahead with the reversal.

I do have all the info for colonoscopy and surgery prep. Meeting my PCP to get surgery clearance next week. Thank you for all your help, GreenTea. Hope you have a wonderful summer, and by the time you are back, who knows, I will be talking about my recovery post reversal!
DX Feb. ‘21 CC IIB @ 51
Jan. ‘21 ER surgery, temp. colostomy
Sigmoid, adernocarcinoma
T4aN0MX, G2
0/24 lymph nodes
LVI: indefinite
PNI: not identified
Margins: clear
March ‘21 started 4 rounds of CAPOX
06/17/21 last day of CAPOX
06/25/21 CT scan clear
CEA: @ dx 4, post surgery 1.9, post chemo: 2.9
07/14/21 colostomy reversal

Sunnycd
Posts: 61
Joined: Fri Feb 26, 2021 10:36 am

Re: Next steps after chemotherapy

Postby Sunnycd » Fri Aug 20, 2021 9:27 am

Quick update: on July 13, I went for a colonoscopy, but unfortunately, they couldn’t do a full one as I wasn’t “empty” enough. So, I was sent home with a gallon of that colonoscopy prep solution to drink to be ready for the takedown surgery the next day. Surgery went well, and my doctor said she didn’t see any anomalies in the “hazy” area on the CT scan, and she also took some of the scar tissue whenever she could. I had my first BM 3 days after surgery and surprisingly, I had very good control!

I was discharged the next day and felt so good that I actually ran errands with my husband afterwards. I had bought a whole bunch of supplies based on the worse case scenario (diapers, diaper rash cream, bidet, portable bidet, etc), and I have not need to use any. But as jinx goes, as I was feeling on top of the world, on week 5 I had an obstruction that landed me in ER. I had asked my surgeon about possibility of obstructions, and she said there were none. That all was good, and if I wasn’t going to the bathroom, it was constipation. Oh, well…I love her positivity though. I was discharged 3 days later and since then I am too afraid to eat, especially salads, which I was eating with gusto after the takedown.

I have a meeting with an integrative oncologist from MSK (Dr Deng) on September 1. Any suggestions on what questions to ask? Isn’t there a big overlap with a nutritionist (though he will probably tackle more on the supplemental side). I must say, I zoomed w 2 nutritionists and they were not helpful at all. I also have my 3 month follow up CT scan (I have lost count of how many CT scans I’ve had since January, from diagnosis, multiple ER, etc). In preparation to that, I already shot an email to my oncologist to press her again on the CtDNA test. :)

Hope everyone is having a great summer! I dropped my oldest son off to college last weekend and as bittersweet as it was, I counted my blessings and was grateful I was able to make the trip!
DX Feb. ‘21 CC IIB @ 51
Jan. ‘21 ER surgery, temp. colostomy
Sigmoid, adernocarcinoma
T4aN0MX, G2
0/24 lymph nodes
LVI: indefinite
PNI: not identified
Margins: clear
March ‘21 started 4 rounds of CAPOX
06/17/21 last day of CAPOX
06/25/21 CT scan clear
CEA: @ dx 4, post surgery 1.9, post chemo: 2.9
07/14/21 colostomy reversal

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O Stoma Mia
Posts: 1647
Joined: Sat Jun 22, 2013 6:29 am

Re: Next steps after chemotherapy

Postby O Stoma Mia » Fri Aug 20, 2021 11:10 pm

Sunnycd wrote:...I have a meeting with an integrative oncologist from MSK (Dr Deng) on September 1. Any suggestions on what questions to ask?

The kind of question you could ask is:

"Could you please focus your recommendations so that they are relevant for a patient who has been diagnosed with Lupus."

You need to ask this kind of question because the doctor is an oncologist and, by default, he will be focusing mainly on the anti-cancer qualities of the nutrients and supplements. But in your case this is not the only thing that matters. Your recommended complementary regimen must be compatible with Lupus and must not be responsible for triggering Lupus flare-ups.

You can read some of the articles below to see what the problem is.
.

Sunnycd
Posts: 61
Joined: Fri Feb 26, 2021 10:36 am

Re: Next steps after chemotherapy

Postby Sunnycd » Mon Aug 23, 2021 12:17 am

Oh, good point! You know, with cancer et al, I *almost* forgot about my Lupus. I stopped taking my lupus medication during chemo, and since I was feeling good with no flare ups, my doctor told me it was ok not to resume.

I have been struggling with what to eat and what supplements to take. I read, research, etc, but I never know what can be applicable to me. It’s a total paradox. For instance, when I wanted to eat things that was supposed to be good for colon cancer patients, I quickly realized that those were also things to avoid if you have an ostomy (fiber, nuts, salads, etc). Now that I was reversed and wanted to go back to eating lots of veggies and fiber and nuts, I realized that I should still be very careful with those things because of the obstruction risk. Now, with Lupus, I will probably be in a similar position in terms of supplements… ugh.
DX Feb. ‘21 CC IIB @ 51
Jan. ‘21 ER surgery, temp. colostomy
Sigmoid, adernocarcinoma
T4aN0MX, G2
0/24 lymph nodes
LVI: indefinite
PNI: not identified
Margins: clear
March ‘21 started 4 rounds of CAPOX
06/17/21 last day of CAPOX
06/25/21 CT scan clear
CEA: @ dx 4, post surgery 1.9, post chemo: 2.9
07/14/21 colostomy reversal

User avatar
O Stoma Mia
Posts: 1647
Joined: Sat Jun 22, 2013 6:29 am

Re: Next steps after chemotherapy

Postby O Stoma Mia » Mon Aug 30, 2021 1:23 pm

Another thought occurred to me about your upcoming September 1st appointment with the Integrative Medicine doctor. If he has the time, you could ask him if he has any suggestions for enhancing the immune system specifically for dealing with COVID type infections -- in case you're interested.

Sunnycd
Posts: 61
Joined: Fri Feb 26, 2021 10:36 am

Re: Next steps after chemotherapy: reversal and supplements

Postby Sunnycd » Wed Sep 08, 2021 10:12 am

Thank you for the suggestion, Stoma Mia. I had the telecall w the MSK integrative dr, and I went over my current supplements which are: B12, B6,D3, turmeric, low dose aspirin, biotin for hair and nails, fish oil. For most he was like, “it won’t do anything, but you can keep on taking if you want” LOL. However, he told me to stop taking B6, which I had started taking during chemo to help w the neuropathy, and HFD. Apparently, after chemo, it can actually bring back the neuropathy.

With my Lupus, he said the choices were limited, but he recommended 4,500 turmeric (which is like 9 pills on current concentrations) and these two herbs, which I ordered and am still waiting from Amazon:

Scutellaria barbata (barbed skullcap / Ban Zhi Lian): 3 scoops (3 flat teaspoons, about 8 grams) mixed with liquid (water, coffee, etc.) twice daily https://www.amazon.com/Ban-Zhi-Lian-Bar ... B0040HNPJW

Berberine: 2 capsules twice daily. https://www.amazon.com/Berberine-Glucos ... B07PSMZ3J1

I will have my first 3 month checks after chemo on sept 20, and onc appt on sept 24. Fingers crossed. Oh, I sent my onc an email asking for the signatera test, AGAIN. I had in person conversations w her about it 3 times, and every time she comes out strongly against, and I leave her office feeling deflated and agreeing w her. Then I research more and more and then I go back to wanting to have it as part of my surveillance plan. Am I being foolish and neurotic? Should I just drop it, given that the premier cancer center find the science iffy and not actionable (on that note, why do I even bother w the CEA tests, which is a poor indicator for me)
DX Feb. ‘21 CC IIB @ 51
Jan. ‘21 ER surgery, temp. colostomy
Sigmoid, adernocarcinoma
T4aN0MX, G2
0/24 lymph nodes
LVI: indefinite
PNI: not identified
Margins: clear
March ‘21 started 4 rounds of CAPOX
06/17/21 last day of CAPOX
06/25/21 CT scan clear
CEA: @ dx 4, post surgery 1.9, post chemo: 2.9
07/14/21 colostomy reversal

IsmailMehdi
Posts: 35
Joined: Sun May 02, 2021 5:52 pm

Re: Next steps after chemo: reversal, supplements

Postby IsmailMehdi » Wed Sep 08, 2021 10:34 am

Regarding signatera. I kept insisting. Like you my CEA is not representative. Finally my onc relented, it would be useful after chemo and after radiation in case of watch and wait and then after surgery. If your CEA is not indicative of tumor, signatera is then an option. That’s how I would put it to your onc.
They don’t want to fight the insurance company, but as I understand it, the signatera company will do the arguing, so that might help.

It’s your health and future, being better informed is not wrong!

Note that signatera is not perfect and does not seem to be effective for “local” recurrence. It will try to tell you if there’s traces of cancer in your blood. Like CEA!
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 signet ring-cell carcinoma
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021
Switched to FOLFIRINOX from session 2. 8 rounds total.
On to chemorad 9/27


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