Next steps after chemotherapy

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Sunnycd
Posts: 54
Joined: Fri Feb 26, 2021 10:36 am

Re: Next steps after chemotherapy

Postby Sunnycd » Wed May 19, 2021 2:30 pm

Thank you, GreenTea and Catstaff. That article was very good reading. I am gathering all the info, questions, as we speak. Steep learning curve, and I feel I know so much more than I did just a few days ago! Meanwhile, I just ordered a Reformer Pilates machine and ready to strengthen my muscles!
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 May 19, 2021 3:42 pm

Sunnycd wrote:... You have about 20 cm left...

Here is a diagram of a typical colon that you can use as a worksheet when you are discussing how much rectal stump is left and where the anastomosis junction might be placed during the reversal operation. The numbers refer to the distance in centimeters from the anal verge.

Image

I don't know what your surgeon means by "20 cm left", but if she is referring to how long the rectal stump might be, then you can get a rough estimate of where the junction will be by looking at the typical lengths of the various segments. The rectum would be about 12 cm long and the recto-sigmoid junction would be roughly 2 cm long. So if there are in fact 20 cm left, then that would suggest that the rectal stump would also include about 6 cm of the lower sigmoid colon, so the junction would be far above any part of the rectum, and the rectum would be left more or less intact. (Does this sound right?)

Anyway, you could use this diagram as a discussion point when talking with the surgeon. She would no doubt be able to indicate how much of the sigmoid colon had been removed and how far down the sigmoid colon the lower cut was made. She could also point out where the primary tumor was.

Sunnycd
Posts: 54
Joined: Fri Feb 26, 2021 10:36 am

Re: Next steps after chemotherapy

Postby Sunnycd » Thu May 20, 2021 2:03 pm

I was looking for a chart like this! Geez, how can you find them like this? Thank you! I replied to my surgeon and her response was:
“ You have all of your rectum left which is generally 15-20 cm. Sigmoid colon was resected”
So, this is good news! Meanwhile, still trying to get an appt w Dr. Pappou from MSK.
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 » Fri May 21, 2021 9:31 am

Sunnycd wrote:... On the day of discharge, my surgeon said not to exercise for 6 weeks, but walk a lot, drink plenty of fluids and no dietary restrictions. I remember being surprised and asked, I can eat anything, no restrictions? It was a definite no restrictions as long as it is healthy and nutritious (remember, I had done no research, was totally ignorant and just followed doctors orders)...

- I had no healing or infection issues after discharge, except that I had an obstruction 10 days later that landed me in ER with tubes up my nose to throat and severe nausea. Started research on food to eat with colostomy determined never to relive this experience..

There are two issues brought up in your recent message that I would like to comment on. They are: (1) exercise restrictions following abdominal surgery and (2) dietary restrictions following abdominal surgery.

  • Exercise Restrictions
    While it is agreed that exercise is a very important part of recovery, the excessive use of strenuous exercise after surgery can cause problems, such as delay in proper wound healing and risk of triggering an incisional hernia or a parastomal hernia. I think that this is probably why your surgeon advised you not to exercise for 6 weeks. Time is needed to allow the surgical wounds to heal properly without physical disturbance.

    However, I think that in the case of strenuous exercising (like bench presses in the gym, etc.) the restriction would be longer than just 6 weeks, especially if you have had a laparotomy with a long mid-line incision. This is because a laparotomy incision like the one you had involves not only cutting through the skin and superficial subcutaneous layers, but also the hard cartilage tissue underneath that serves as an anchor for the abdominal muscles on both the left and right sides of the abdomen. I think that this layer, called the linea alba is composed mostly of collagen connective tissue and does not contain any primary nerves or blood vessels. And this is the problem. There is not enough good blood supply there to facilitate a quick healing of that area after the conclusion of the surgery.

    I think it takes much, much longer than 6 weeks to fully fuse the two sides of the alba linea together, and if you do very strenuous twisting operations or strenuous abdominal exercises before this layer is fully healed then you run the risk of delaying the full healing of your abdomen midline, and you may also risk a hernia near the belly-button. This is just my personal opinion.

    So, what I would suggest is that you go lightly on the gym equipment and on your Pilates machine until you have talked to a qualified sports medicine doctor about the potential risks involved in strenuous exercise for abdominal surgery patients.

    It may turn out that you need to use a special hernia belt or ostomy abdominal binder when exercising vigorously with this kind of equipment.
    .
  • Dietary and Nutritional Restictions
    After having both abdominal surgery and chemotherapy, the digestive system will not be the same as before, and special diets are usually required to take into account the bowel damage and side-effects that need to be addressed. It would help to get some expert advice on this matter from a highly qualified nutritionist or dietitian.

    In your case, you had an obstruction 10 days after your initial surgery, and this might have happened because you had been told that you could eat whatever you wanted to eat, without restriction. For your next surgery, I think that you need to make sure that you get the best advice possible. This is because you can't afford to retard your reversal recovery in adopting a diet that I going to cause problems with the newly created anastomosis junction which will be just starting to heal.

    What I would suggest is that you ask one of your doctors for a referral to a Registered Dietitian (RD) who also has a certification in oncology nutrition (CSO), if possible. It is best to have a dietitian who is also very familiar with cancer, since the different cancer treatments (surgery, chemo, etc) can wreak havoc with the digestive system in different ways, and the correct diet for a particular cancer patient to follow must be customized according to whatever treatment side effects the patient happens to be experiencing.

    In the link below you will find a list of Certified Specialists in Oncology Nutrition in the USA. In the list there are 32 CSOs in New Jersey, and a few of these are in Bergen County or nearby areas. Once you get a referral from your doctor, you can check if the name of the referral dietitian is on the list. It's important that the referral dietitian be very experienced in cancer cases. You don't want a generic dietitian who is just going to blindly prescribe nutritious anti-oxidant foods across the board without ever thinking about the consequences of the diet on your quality of life.

    Board Certified Specialists in Oncology Nutrition (CSOs)
    List of Board Certified Specialists in Oncology Nutrition

    There are also some general nutritionists/dietitians listed in a directory for Bergen County. If you can't get a good referral through your doctors, you might inquire with some of these to see what their qualifications are and whether they have had any experience with cancer patients:
    https://www.healthprofs.com/us/nutritionists-dietitians/nj/bergen-county

Keep in mind that there are a number of different certifications available for dietitians. Just make sure that you find one who is certified in an area suitable for your purposes.

    Registered Dietitian (RD), Registered Dietitian Nutritionist (RDN), Certified Nutrition Support Clinician (CNSC), Certified Specialist in Oncology (CSO) , Certified Diabetes Educator (CDE), Certified Dietitian Nutritionist (CDN), Fellow of the Academy of Nutrition and Dietetics (FAND)

Sunnycd
Posts: 54
Joined: Fri Feb 26, 2021 10:36 am

Re: Next steps after chemotherapy

Postby Sunnycd » Tue Jun 01, 2021 3:44 pm

Well, my last round was delayed again because my onc felt I was too weak for chemo (low platelets, WBC, basal, etc). I was disappointed, as I wanted to be done and over with it, but this weekend temperatures in NJ dropped to 50F and now I am coming to see this as a blessing. I will get my infusion this Friday when temps are in the 90’s!

I got my appointment w Dr Pappou from MSK on June 15, and with my original surgeon on June 22. Still compiling the list of questions, so any suggestions, greatly appreciated.

I asked about the survivorship plan at MSK, and they said they will refer me to it after the 5 year milestone. Meanwhile, I am compiling a list of doctors that I plan to see on regular basis...should my primary care physician be an internal medicine dr, or obgyn. Right now, the default is my rheumatologist, only because he was the only doctor I saw consistently for 7 years because of my Lupus.
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 02, 2021 8:21 am

Sunnycd wrote:Well, my last round was delayed again because my onc felt I was too weak for chemo (low platelets, WBC, basal, etc). I was disappointed, as I wanted to be done and over with it, but this weekend temperatures in NJ dropped to 50F and now I am coming to see this as a blessing. I will get my infusion this Friday when temps are in the 90’s!

I got my appointment w Dr Pappou from MSK on June 15, and with my original surgeon on June 22. Still compiling the list of questions, so any suggestions, greatly appreciated.

I asked about the survivorship plan at MSK, and they said they will refer me to it after the 5 year milestone. Meanwhile, I am compiling a list of doctors that I plan to see on regular basis...should my primary care physician be an internal medicine dr, or obgyn. Right now, the default is my rheumatologist, only because he was the only doctor I saw consistently for 7 years because of my Lupus.

Hi Sunnycd,

I'm sorry to hear about the two-week delay in your last CAPOX infusion, but I think this is probably the case for a number of patients around the 4th cycle due to the accumulated effects of the first three cycles. Just try to stay healthy and well-hydrated and I'm sure you'll make it through OK.

Since the temperatures in N.J. are predicted to be over 90 for the next week or so, be sure to keep your room clean and change the sheets and pillow-cases often in case the bedding becomes damp with sweat. Damp bedding can attract various fungi and dust mites that can then cause allergies, skin problems, etc. You will want to stay healthy enough to be able to attend your two surgeon appointments in good form later in the month.
.
  1. For your appointment with the MSK surgeon on June 15, you will probably be on your last week of Xeloda. Do you have to travel very far to see him? Do you think that you will be fit enough to make the trip? **** See Note appended below ****

    Before your appointment with him you could read the MSK and ASCO materials on Survivorship Planning. Please note that your Survivorship Plan should start as soon as you have finished your last treatment intervention. (The recommendation that you mentioned above to defer the Survivorship Care Plan until after the 5-year milestone doesn't make much sense to me. It's not clear who told you that. The planning needs to start now and needs to be in place by the time your reversal surgery is finished.)

    https://www.mskcc.org/hcp-education-training/survivorship/survivorship-care-plan

    https://www.cancer.net/survivorship/asco-cancer-treatment-summaries

    In particular, your Treatment Summary (TS) needs to be completed before you lose contact with your oncologist and your surgeon. They are the ones who know all the details necessary for accurately summarizing your past treatment interventions.

    Yes, you could essentially lose contact with your Oncologist and Surgeon over time. This is because oncologists are mainly interested in cancer, not in other things like fecal incontinence, chemo brain, dietary problems, etc. It's the same for surgeons I think. Surgeons are mainly interested in insuring that the latest surgery went well, or that there might be the possibility of another surgery, such as a hernia repair, but they're not particularly interested in counseling patients on post-therapy issues like fecal incontinence, long-term peripheral neuropathy, etc. They consider these issues to be the domain of other kinds of doctors, and they tend to distance themselves from patients who no longer actively need the services of oncology or surgery -- at least that was my experience during my 5-year followup period.

    So, in my opinion, you are basically on your own after the reversal surgery except for the routine cancer-related periodic check-ups for CEA and scans. You need to put together a good team that will help you get through the next 5 years and that will help in all of the non-cancer areas related to long-term after-effects of treatment. I think it would work out OK to have your rheumatologist head the team since he knows you best. Just make sure that he has all of the information on your recent treatments and that he is in contact with the other members of your team and can get in contact with your oncologist in case there are questions with a recent scan or CEA test.
    .
  2. For your June 22 appointment with your original surgeon you will probably already have finished chemo by then. I assume that you will be talking to her about reversal surgery planning in the event that you decide to go with her for the reversal surgery. In that case, the main questions would probably pertain to how and when that surgery would proceed. The main problem with the reversal surgery as I see it would be in dealing with the adhesions that probably developed after your original emergency surgery with the long vertical incision. According to several articles that I have read, it may take an hour to an hour-and-a-half for the surgeon to cut out all of the adhesions just to gain access to the rectal stump -- which may have receded into the bottom of the pelvic cavity over the past several months. The rectal stump needs to be fully accessible in order to proceed with the anastomosis connection.

    For your information, your original laparotomy surgery was probably done under CPT Code 44143:
      CPT 44143: Colectomy, partial; with end colostomy and closure of distal segment (Hartmann type procedure)
    For your upcoming reversal surgery, it looks like the surgery would be done under CPT Code 44626:
      CPT 44626 Closure of enterostomy, large or small intestine; with resection and colorectal anastomosis (e.g., closure of Hartmann type procedure)

        "...Finally, for CPT 44626, this procedure includes very similar work to what is described by CPT 44625, but in this procedure, the two structures anastomosed are the colon and the rectum (aka a colorectal anastomosis). This procedure may also involve resection of part of the remaining colon and part of the remaining rectum before creating that colorectal anastomosis. You will notice in the parentheses in the code description that CPT states this procedure may be coded for closure of a “Hartmann’s type procedure.” In a typical Hartmann’s procedure, one end of the colon is brought out to the abdominal wall as a colostomy while the remaining rectal “stump” is stapled closed. So in reversing a Hartmann’s, the surgeon would typically resect part of the colon that was attached to the abdominal wall and maybe “clean up” the end of the rectal stump and then perform a colorectal anastomosis. That’s why closing the ostomy created during a Hartmann’s procedure would typically fall under CPT 44626. It is important to note, though, that most but not all Hartmann procedure takedowns would be coded as 44626. In a modified Hartmann’s procedure, the surgeon will connect one end of the colon to the abdominal wall as a colostomy and then staple closed a “long Hartmann’s stump” that includes part of the sigmoid colon plus the rectum. If the surgeon closes the ostomy at a later date and the anastomosis created is between part of the colon that was connected to the abdominal wall as an ostomy and the sigmoid colon (rather than the rectum), you would code CPT 44625 (since the anastomosis would be colon to colon instead of colorectal). Small details here would make a difference in the coding..."
        Reference: https://codingmastery.com/2019/10/09/code-ostomy-takedowns-with-ease/

In summary, try to manage things now so that you don't have to cancel these appointments at the last minute.

I have some questions that could be added to your list, but it would help to know more about why you are having these meetings and just what you expect to achieve from them. Some of my questions are rather theoretical in nature and may not be of much interest to you, so I don't want to suggest ideas that are not going to be useful.

Right now, I think that the most important question to ask each surgeon would be: "How much time do I have for this particular appointment" so that you can quickly prioritize your list and be sure that the most important questions are dealt with before your time is up.

Thank you.
=========

Added later:

**** NOTE ****
From what I can determine from the various MSK websites, the MSK Bergen facility near you can do surgical consultations (like your June 15th consultation with the MSK surgeon) but it doesn't seem to offer surgery itself at this facility **. This is one thing that you could check during your meeting on the 15th. If you are considering having the MSK surgeon do your reversal surgery, then it might have to be done in the main MSK surgery facility in NYC, but this might pose problems for you if you are planning to have your surgery done only in nearby Bergen County. Be sure to check this out. Since the MSK surgeon is certified to practice in New Jersey, he could contact your insurance company to see if they would exceptionally allow the surgery to be done in New York while all other surgery-related support would be done locally in his New Jersey office.


    Services Offered at MSK Bergen (Montdale, New Jersey)
    At MSK Bergen, residents of Bergen, Essex, Passaic, and Hudson counties in New Jersey, and those living in the lower New York counties of Orange and Rockland, have easier access to the following MSK services:
    surgical, medical, and radiation oncology consultations
    • chemotherapy
    • immunotherapy
    • radiation treatment
    • mammography, ultrasound, MRI, CT, and PET imaging
    • clinical trials
    • a cancer-specific retail pharmacy
    • supportive services, including rehabilitation, lymphedema therapy, genetic counseling, social work, and nutrition
    https://www.mskcc.org/locations/directory/msk-bergen

    **
      "...For patients requiring surgery, all of the pre-operative care and post-operative care can be done here at Bergen. They need to go into Manhattan for surgery. But other than that, everything else can be done here..."
Last edited by Green Tea on Fri Jun 04, 2021 1:02 pm, edited 1 time in total.

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Green Tea
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Re: Next steps after chemotherapy

Postby Green Tea » Thu Jun 03, 2021 11:01 pm

Sunnycd wrote:.... I will get my infusion this Friday ...

Sunnycd -

For your infusion today, keep in mind that if you are having severe problems with reactions to oxaliplatin there are options that the infusion center can invoke. You can always ask...
  • Dose reduction. Reduce the dose to 85%.
  • Longer infusion time. Increase the infusion time to 3 or 4 hours to spread the available dose over a longer period and thereby reduce immediate toxicity.

Question: For your recent low blood counts, did the doctor give any medications for recovery -- e.g., Neulasta for neutropenia?

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Green Tea
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Re: Next steps after chemotherapy

Postby Green Tea » Fri Jun 04, 2021 11:38 pm

Sunnycd wrote:... Also, thanks for pointing to the cancer buddy program. I just signed up to be matched for one...

Sunnycd -

Did you ever get matched with a cancer "buddy"? If so, was it someone with an end colostomy? I think it would be important for you to find someone to talk to who has had end-colostomy experience from a patient's perspective.

Sunnycd
Posts: 54
Joined: Fri Feb 26, 2021 10:36 am

Re: Next steps after chemotherapy

Postby Sunnycd » Sat Jun 05, 2021 2:09 am

Oh, GreenTea. I got my infusion. It is now 2:49AM here and I can’t sleep. I sent an email to my oncologist two days before and asked if there were any precautions/options given my last reaction or if I should “plow through” to the last round. Nurse emailed “if you *really* want, they could look into lowering the dosage, or you could plow it through. If given the option, what I REALLY wanted was to forgo the chemo, so don’t ask me “what I really want”. So I plowed it through and regret dearly. It is my right arm, so it is also much harder to manage, much more painful. I wanted to put bio freeze, but even pulling up the sleeves hurt, so I gave up.

As for the cancer buddy, it is slow going. I said I wanted someone that went through a reversal as well. The match never contacted me, so they matched me with a lady that has a permanent ileostomy. She texted me while I was in the middle of the infusion in tears. She’s nice (well, you have to be to volunteer and dedicate time to be a cancer buddy) but I couldn’t text much.
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

Pain in arm after IV infusion

Postby Green Tea » Sun Jun 06, 2021 3:36 am

Sunnycd wrote:.. It is my right arm, so it is also much harder to manage...

Sunnycd-

I'm sorry to hear about your painful experience with the IV infusion. This sort of thing can happen, especially if the IV is administered peripherally rather than centrally through a port installed in the chest, and even more so if your peripheral veins are starting to get old and inflexible -- which is often the case for patients over 50yrs of age. Infusion site extravasation can happen also if the nurse has difficulty inserting the IV cannula into the vein.

This type of adverse event is well known and has an entry entitled "Injection site reaction: A disorder characterized by an intense adverse reaction (usually immunologic) developing at the site of an injection" on p. 42 of the CTCAE document cited below, with levels defined as:
  • Grade 1 - "Tenderness with or without associated symptoms (e.g., warmth, erythema, itching)
  • Grade 2: - "Pain; lipodystrophy; edema; phlebitis "
  • Grade 3: - "Ulceration or necrosis; severe tissue damage; operative intervention indicated"
  • Grade 4: - "Life-threatening consequences; urgent intervention indicated"
There is another adverse event on the same page (p.42) that may be relevant: "Infusion site extravasation: A disorder characterized by leakage of the infusion into the surrounding tissue. Signs and symptoms may include induration, erythema, swelling, burning sensation and marked discomfort at the infusion site" with levels defined as:
  • Grade 1 - "Painless edema"
  • Grade 2 - "Erythema with associated symptoms (e.g., edema, pain, induration, phlebitis)"
  • Grade 3 - "Ulceration or necrosis; severe tissue damage; operative intervention indicated"
  • Grade 4 - "Life-threatening consequences; urgent intervention indicated".
Common terminology criteria for adverse events (CTCAE)
https://ctep.cancer.gov/protocoldevelopment/electronic_applications/docs/CTCAE_v5_Quick_Reference_8.5x11.pdf

Doctors and infusion center nurses should already be familiar with these kinds of reactions and should be prepared to take necessary steps according to the Grade of the reaction. In general, Grade 3 type adverse events require the therapy to be suspended until the underlying problem can be rectified. Grade 4 adverse events require the therapy to be discontinued permanently.

===

There are basically three ways to administer the IV infusions, and your oncologist should have explained the pro's and con's of all three methods before starting chemo, and should have determined the best option for you given all factors considered.

Ways of administering IV infusions
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=50202&p=383923#p383923

Did your new oncologist brief you on this and discuss this with you? Which method did she decide to use?
  1. Peripheral IV to the wrist or forearm?
  2. PICC line to the upper arm?
  3. Central line (port in the chest)
What was your experience with the 4 infusions that you had? Which arm was used? Any pain?
  1. Round 1 - Left arm? - Any pain?
  2. Round 2 - Right arm? - Any pain?
  3. Round 3 - Left arm - Pain relieved by bio-freeze
  4. Round 4 - Right arm - Severe pain, pain not relieved by bio-freeze

Other posts on "Ports vs. Peripheral IVs" and fragile veins:


    "...My Xelox experience started out like yours, with an IV connection to the back of one hand for the first infusion. On the second infusion, however, they could no longer find a large enough vein in the left hand, so they connected to the back of the right hand instead. On the third infusion, neither the back of the left hand nor the back of the right hand was possible any more, as the small veins on the back of both hands had already shriveled up and had receded due to the oxaliplatin, so the nurses did the connection higher up on the arm where the veins are bigger. That worked for a couple more infusions, but eventually I had to have a port installed because the oxaliplatin had made all of the peripheral veins in my lower arm inaccessible..."
    Reference: https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=59315&p=491008#p491008

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Green Tea
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Re: Next steps after chemotherapy

Postby Green Tea » Mon Jun 07, 2021 1:29 am

Sunnycd -

I'm beginning to think that your Lupus condition might be the source of some of your past severe reactions to chemo. In other words, it might be the case that certain chemo regimens can trigger a lupus flare and make an ordinary chemo side effect more severe than usual.

Also, if you are still taking any medications for lupus, they might interact unfavorably with chemo. For example, there is a known major interaction between hydroxychloroquine and oxaliplatin:
https://www.drugs.com/interactions-check.php?drug_list=1298-0,1760-0

Is your oncologist aware of this?

Since you are almost finished with your CAPOX rounds by now, this will soon all be behind you, but what concerns me most right now is whether your surgeon knows about your lupus condition and whether she will take this into account properly in your upcoming reversal surgery.

You have said earlier that you are healthy except for lupus, and in addition your surgeon has said that "you are a healthy woman". But does your surgeon know about your lupus condition and about the constraints imposed by lupus?

    Sunnycd wrote:Well, she did reply... “ The surgery will be done laparoscopically. You will have completely normal bowel habits after with normal control. There is no need for diapers, etc. You have about 20 cm left. The connection will heal as you are a healthy woman...."
One of the constraints is that certain medications typically used in the context of surgery recovery are ones that can trigger lupus flare-up. For example, if antibiotics are needed for post-surgery management of wound infection, then some of the following constraints may apply:

Is your surgeon aware of these constraints?

Sunnycd
Posts: 54
Joined: Fri Feb 26, 2021 10:36 am

Re: Next steps after chemotherapy

Postby Sunnycd » Tue Jun 08, 2021 12:48 am

Dear GreenTea, after my 2nd cycle, where I had bad HFS, my oncologist called and told me to stop taking my Lupus medicine as she suspected it was interfering with my chemo. My rheumatologist concurred, given my Lupus have been fairly stable since being diagnosed (knock on wood), so I haven’t been taking hydroxychloroquine. But I will bring it up to the surgeon(s) - I hadn’t thought of it because it is in my medical files, but you are right; I shouldn’t assume.

My arm is getting better; the pain intensity was much higher than round 3, but the recovery seems faster. I have been walking a lot, something I didn’t do before and I think that’s helping.
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 » Fri Jun 11, 2021 11:20 am

Sunnycd wrote:...I got my appointment w Dr Pappou from MSK on June 15, and with my original surgeon on June 22. Still compiling the list of questions, so any suggestions, greatly appreciated... .

Some questions to consider asking the MSK surgeon on your up-coming June 15 appointment:

    • Will my insurance cover surgery in MSK-Manhattan Surgery Center (6th Floor) as well as my pre- and post-surgery care at MSK-Bergen (New Jersey)?
    • What are the requirements for setting up a surgery appointment at MSK-Manhattan? When would I sign the Informed Consent documents?
      o Pre-surgery preparation (MSK-Bergen)- Diet/meds restrictions? Bowel preparation? Pre-surgery appointments with surgeon and anesthesiologist?
      o In-patient admission procedure - MSK-NYC. Does admission take place the night before the surgery date or is it on the surgery date itself? How long does the admission process take for a new patient? Am I allowed to bring anyone else to the hospital? How will my valuables (wallet, credit card, jewelry, cell phone, etc.) be safeguarded while I am being admitted? What kinds of personal items am I not allowed to bring into the hospital? Is there a hospital leaflet that explains all of the requirements and restrictions related to hospital admission?
      o Post-surgery follow-up (MSK-Bergen) - Does MSK-Bergen provide support services 7 days a week? Does it have WOCN nurses specializing in wound care and fecal incontinence? Does it have any oncology dietitians for recommending appropriate post-surgery diets? Is there provision at MSK-Bergen for after-hours Emergency services?
    • When can an end-colostomy reversal surgery be scheduled for me at the earliest at MSK-NYC?
    • How many Hartmann end-colostomy reversals have you personally done in the past? What has been your success rate? Any problems in particular?
    • What kind of information from the original surgeon is needed before the reversal can be properly scheduled at MSK?
    • Will this surgery be a difficult one if it is done by an MSK surgeon who did not design the original end-colostomy Hartmann procedure?
    • How will the surgery properly take into account my Lupus diagnosis along with its various restrictions/constraints?
    • What type of surgery? Laparoscopic? Open? Mixed (Lap -->> Open)?
    • 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. Will this require any prior special prep, e.g., enema to flush out the rectal stump; colon cleanser to clean out the colon? Special diet? Stopping of any meds? Will a pre-surgery colonoscopy be required? Will a pre-surgery CT-scan or MRI of the rectal stump area be required? What if any pre-surgery scans show suspicious spots? What then? Will the surgery then be cancelled until the suspected issues are resolved?
    • How long will the surgery last, given that there may be some adhesions to remove before starting the reversal itself?
    • What types of sedatives/anesthesia will be used? What kind of pain medications? Are these medications appropriate for Lupus patients?
    • 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?
    • What method will be used to test the new anastomosis junction for leaks? What procedure will be followed if a leak is found after finalizing the stapling procedure?
    • Can I reserve a recovery room with a private WC, private shower?
    • Do I need to bring my own personal supplies (shower gel, shampoo, creams, toothpaste, wash cloths, etc.)?
    • When will I receive a written surgery report? What type of information will the surgery report likely contain?
    • How long is the in-hospital recovery expected to take?
      o Do you have any leaflets or pamphlets with post-surgery instructions for patients?
      o How long will it take for my bowel to "wake up" and start functioning properly?
      o What will be the first signs that my bowel is reviving?
      o When will I be taken off epidural pain management; when will the abdominal drain tubes and the urethral catheter be removed; and what will be used for pain management in the post-surgery recovery period (e.g., Tylenol Extra Strength, etc.)? Will any of these pain medications cause constipation or other trouble with bowel motility? What are the restrictions on my personal use of pain medications? Can I use my own OTC pain meds?
      o What choice will I have from the hospital kitchen menu? Can I choose only non-greasy, gluten-free, low-residue, soft food items like scrambled eggs, soup, rice porridge, etc.? What if I cannot tolerate what the hospital kitchen provides? Can I bring in my own food?
      o What will the first bowel movements be like and will I have any control at all over their onset?
      o How long will it take for the rectum and associated muscles to get back into shape? When can I expect to have a more-or-less normal schedule of bowel movements?
      o How long with it take for the various incisions to heal? Does this require special attention or special procedures to remove staples or stitches, etc.?
      o Will there be any problems with restricted blood flow (ischemia) or reduced nerve function to the organs and muscles in the pelvic area?
      o What kinds of medical supplies and materials will I need in order to deal with the post-surgery recovery? Will the hospital provide them, or do I need to acquire them myself?
      o After discharge from the hospital, will I be able to travel from NYC back to New Jersey without the risk of having some sort of bowel "accident"?
      o What will my Quality of Life (QOL) be like in the immediate post-surgery period? What kinds of things will I be able to do and what will I not be able to do?
    • For post-surgery support services at MSK-Bergen, who will be my day-to-day contact there? Is there a contact number there that is active 24 hours a day? Will I need to have referrals to other doctors or other specialists in the area to take care of my recovery? What kind of specialists would help? What kinds of specialists have your patients used in the past? Are they happy with their post-reversal progress?
    • How soon after my reversal will it be possible to have a full colonoscopy without risk of injury to the new anastomosis connection?
    • What kind of impact will my Lupus status have on my recovery and QOL?
    • Does MSK have any support groups in the Bergen County area that would be useful for me to join? What topics do they typically focus on? How often do they meet?
    • At what point will my case be transferred to my oncologist (or my rheumatologist) or whoever will be managing my 5-year follow-up schedule? Who should be in charge of my follow-up after I have recovered from the surgery? Who will be drafting my Treatment Summary (TS) and my 5-year Survivorship Care Plan (SCP)?
    • Will my Survivorship Care Plan properly include not only screening for possible CRC recurrences with periodic CT scans and CEA/ CA-19.9 tumor marker tests, but also screening for all of the other benign treatment-induced long-term effects that need to be managed, and all of the Lupus-related flare-ups that need to be taken into account?

Sunnycd
Posts: 54
Joined: Fri Feb 26, 2021 10:36 am

Re: Next steps after chemotherapy

Postby Sunnycd » Sat Jun 12, 2021 7:44 pm

GreenTea…Wow… :shock: Very impressive list. I don’t even know how to thank you for all this.
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: 54
Joined: Fri Feb 26, 2021 10:36 am

Re: Next steps after chemotherapy

Postby Sunnycd » Mon Jun 14, 2021 11:07 pm

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?
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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