Life Earthquake: Wednesday Feb 21 Rectal Cancer T3C N2 M0

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SpringerSpanielMommy
Posts: 23
Joined: Fri Mar 23, 2018 8:52 pm

Life Earthquake: Wednesday Feb 21 Rectal Cancer T3C N2 M0

Postby SpringerSpanielMommy » Mon Mar 26, 2018 8:58 pm

My daughter in her 30's was diagnosed with 3cm adenocarcinoma triple negative breast cancer January 10, 2018. They did genetic testing and she was BRCA1 so the recommendation from her genetic counselor was for me to have genetic testing as well.

I am BRCA1 and NBN variant, as a result I was referred to a gynecologist onc. for a pre-surgical appointment to remove my ovaries and fallopian tubes. During that exam the doctor felt a mass and thought that I had already developed ovarian cancer. The very next day I had a colonoscopy and a rectal cancer (intramucosal adenocarcinoma) 8cm, 4cm from AV, very low and almost all the way around the rectum was diagnosed. The sphincter muscle is involved as well as 8 pelvic lymph nodes. All my blood work is perfect, everything in normal range. A little periodic rectal bleeding with bowel movements but that has been going on since my 30's and been diagnosed as hemorrhoids. I have had sigs and exams since then and never anything else found. They are amazed how healthy I am overall, and keep saying you look so good, it is shocking and disturbing how well my body has hidden this and I am pretty much asymptomatic.

My daughter has just finished her 7th chemo treatment of 24 total and then she will have a bilateral mastectomy with a total hysterectomy planned to happen as soon as all of this other is dealt with. They do not play with BRCA1 mutations, to try and prevent mets, so the idea was for me to have the girly bits removed and then a bilateral mastectomy since the chance of developing these cancers are so high for us. Had my daughter not been diagnosed and the genetic testing done, I would still not be diagnosed, I am grateful for that blessing. The good news is she is having a complete response, the tumor has already totally disappeared, and her doctors are very happy with her response.

I am having neoadjuvant chemo/radiation for 30 sessions over 6 weeks, starting this Wednesday. I will be taking 1500mg of Xeloda twice a day only on the days I am having radiation. Then I will be having systemic chemo and will be having a port put in at the end of this first 6 weeks of treatment, and then about a week break before the start of the next type of chemo. The goal is to downstage me and if possible get me to a complete response. Both my chemo onc and radiation onc consider my treatment curative, and are very optimistic.

I am at one of the top cancer hospitals in the US and have a really talented team of doctors. It is scary because I have never been sick, nor taken medicine. I have always powered through headaches without even Tylenol or Ibuprofen because I wanted to protect my liver and kidneys. So, becoming a Pharmaceutical Queen is way outside my comfort zone, and reading the drug inserts, holy cow!!!!!!!!!!!!

I am a very strong Christian and I am confident that King Jesus is stronger and Lord over cancer, apparently this is the path that I am to walk. So, I am looking for friends, people who are walking or have walked this path to come alongside me and help share this chapter of my life.
DX: 2/21/2018 Rectal Cancer: T3c N2 M0, Intramucosal Adenocarcinoma
3/20/2018 Radiation 45gy in 25 fractions, while taking 3000mg Xeloda only radiation days starts 3/28/2018
5/8/2018 Completed Chemoradiation with 5 additional Boosts
6/29/2018 Started 4000mg Xeloda 14 days on and 7 days off. Oxaliplatin Infusion with Power Port.
Joshua 1:9 Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.

Mercy110
Posts: 108
Joined: Wed Aug 16, 2017 12:13 am

Re: Life Earthquake: Wednesday Feb 21 Rectal Cancer T3C N2 M0

Postby Mercy110 » Mon Mar 26, 2018 9:32 pm

So sorry to hear your news. My mum has similar experience that cancer sometimes has no signs. She is having her chemo break now. Xeloda was not working on my mum after surgery, mets to lungs discovered for increasing CEA.

I rely hope you respond well to the treatment plan and get well rely soon. It's so strong of you to keep hope. We are Christian family as well. Sometimes we do not understand the plan of God but we believe that the good days are yet to come. We will beat this and live much longer!

Prayers to your family, esp you and your daughter.
Mum age 56, NRAS-mutate Q61R
2017-05: Surgery with stoma. T4N1M0. Stage3C. Xeloda No Radio. CEA: 7.3, 8.0, 9.8 CT: Multiple lung nodules. Stage4.
2017-09: 85% FOLFOX + Avastin CEA: 7.0, 4.7 (10/10), 3.7 (11/10), 2.9 (12/3), 2.2 (12/21), 2.4 (01/09), 3.4 (2/24), 2.6 (3/9), 3.6 (5/24), 19.2 (8/16), 22 (8/31), 24.9 (9/18), 27.7 (10/9)
2017-11: Stable CT
2018-03 to 05: Folfox Allergy
2018-08: Folfiri, CT lung met, 2 lymph nodes
2018-10: Folfiri + Avastin

WISH ALL MIGHTY GOD HEALS MUM WITH HIS MIRACLE

NHMike
Posts: 1796
Joined: Fri Jul 21, 2017 3:43 am

Re: Life Earthquake: Wednesday Feb 21 Rectal Cancer T3C N2 M0

Postby NHMike » Mon Mar 26, 2018 10:03 pm

I'm 3B with similarities though my tumor was about 100 cm^3 and 5.5 cm long and 3 suspicious lymph nodes. My treatment was Xeloda + Radiation, then surgery and then Xeloda + Oxaliplatin. I suspect that your treatment is Xeloda + Radiation, then Xeloda + Oxaliplatin (or something else), and then surgery. If the second phase is Oxaliplatin, then you should probably be prepared for the potential side-effects. My thread is at viewtopic.php?f=1&t=58447 and it's rather long. I'm about nine months into treatment. There is potentially a lot of stuff ahead of you and we can help to get you through that though it looks like you already have a lot of experience with the big C.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

SpringerSpanielMommy
Posts: 23
Joined: Fri Mar 23, 2018 8:52 pm

Re: Life Earthquake: Wednesday Feb 21 Rectal Cancer T3C N2 M0

Postby SpringerSpanielMommy » Mon Mar 26, 2018 10:05 pm

A crazy fact when I had my radiation simulation and they marked my body etc, I asked the radiation technologist doing it, how they determine the axis for the radiation and the amount of grays per area for the treatment. He got super excited and said no one asks these questions and it is amazing what happens. He then went into the artificial intelligence and sophisticated laser programming, etc. I did not say this, but my immediate thought was a computer is doing all of this, and the technician is simply running a computer program, where X marks the spots of focus, and what if it is hacked, will I be fried like a fritter, without anyone noticing a malfunction?????????

Fast forward to today, and I got a call from the radiation therapy center that my appointment for tomorrow is cancelled, the machine is broken. So, when I told my husband tonight he said, "Honey, Russians and other hackers are not interested in hacking the radiation computer, or in seeing your ass." hahahahaha.

I am not taking my first dose of Xeloda until the day of the radiation treatment and have no idea what to expect. My doctor said simply take 3- 500mg 12 hours apart, and eat something when taking it. I had read a study that indicated an improved response to the tumor when taken within 2 hours of the scheduled radiation treatment. What has been your experience for timing and taking these pills?
DX: 2/21/2018 Rectal Cancer: T3c N2 M0, Intramucosal Adenocarcinoma
3/20/2018 Radiation 45gy in 25 fractions, while taking 3000mg Xeloda only radiation days starts 3/28/2018
5/8/2018 Completed Chemoradiation with 5 additional Boosts
6/29/2018 Started 4000mg Xeloda 14 days on and 7 days off. Oxaliplatin Infusion with Power Port.
Joshua 1:9 Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.

NHMike
Posts: 1796
Joined: Fri Jul 21, 2017 3:43 am

Re: Life Earthquake: Wednesday Feb 21 Rectal Cancer T3C N2 M0

Postby NHMike » Mon Mar 26, 2018 10:30 pm

SpringerSpanielMommy wrote:A crazy fact when I had my radiation simulation and they marked my body etc, I asked the radiation technologist doing it, how they determine the axis for the radiation and the amount of grays per area for the treatment. He got super excited and said no one asks these questions and it is amazing what happens. He then went into the artificial intelligence and sophisticated laser programming, etc. I did not say this, but my immediate thought was a computer is doing all of this, and the technician is simply running a computer program, where X marks the spots of focus, and what if it is hacked, will I be fried like a fritter, without anyone noticing a malfunction?????????

Fast forward to today, and I got a call from the radiation therapy center that my appointment for tomorrow is cancelled, the machine is broken. So, when I told my husband tonight he said, "Honey, Russians and other hackers are not interested in hacking the radiation computer, or in seeing your ass." hahahahaha.

I am not taking my first dose of Xeloda until the day of the radiation treatment and have no idea what to expect. My doctor said simply take 3- 500mg 12 hours apart, and eat something when taking it. I had read a study that indicated an improved response to the tumor when taken within 2 hours of the scheduled radiation treatment. What has been your experience for timing and taking these pills?


I took them when I could and did my best to space them 12 hours apart. You don't know exactly when you're going to get your radiation though you should have a good idea around the appointment time. I would say that they were on time about 50% of the time. The worst was having to wait two hours. They had a patient with a lot of difficulties and it took a while to get his treatment done. There was one time when they had a technical problem where their treatment network had a failure. They got it resolved the next day.

I think that a radiation doctor has to look things over that the computer generates so there's a safety/process step.

Your concerns are valid though I would guess that radiation machines are a lot safer today than in the past. There is a classic case study for university students studying computer science and it's the Therac-25 which you can read about at https://en.wikipedia.org/wiki/Therac-25

I worked with a guy that worked on the software for this system back in the 1980s and people did die due to software bugs. This is not meant to scare you as I went though this as do large number of other people. The science of software quality assurance has advanced considerably since the dark ages.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

retiredteacher
Posts: 95
Joined: Sat Oct 21, 2017 1:34 pm

Re: Life Earthquake: Wednesday Feb 21 Rectal Cancer T3C N2 M0

Postby retiredteacher » Tue Mar 27, 2018 11:15 am

I timed my breakfast and Xeloda every morning so that I ate 30 minutes before ingesting Xeloda; ingested the Xeloda about one hour before walking into the radiation clinic - with a 45 minute drive into town, things worked out well. Did it improve the outcome? No way to know on a singular case, really, but I did have a very good response.
RC, F, 63 at diagnosis, Sept. 2017
Adenocarcinoma 6.3 - 7 cm tumor (PET)
Initial path, MSS, G2,
Stage est. T3N0M0 PET only
2500 Cap/RT Oct/Nov18; 25 treatments
"Near complete metabolic response" PET Jan 2018
CEA 0.5 Oct. 2017, Jan. 2018
MRI Feb. 2018 for Presurgical staging yT2 N0 12 cm from AV 3 cm in size
LAR Feb 20 yT1N0M0 0/21 G1 0.3 cm in size
CAPEOX starting March 2018, oxi and cap reduced to 80% at cycle 3
Completed 4 cycles CAPEOX; stopped due to gut issues.

SpringerSpanielMommy
Posts: 23
Joined: Fri Mar 23, 2018 8:52 pm

Re: Life Earthquake: Wednesday Feb 21 Rectal Cancer T3C N2 M0

Postby SpringerSpanielMommy » Tue Mar 27, 2018 7:27 pm

Thank you NHMike for the link about the Therac-25, it is a good thing we are a lot farther along now than then, and I am taking comfort in knowing the number of accidents is really small. Sadly, I have realized that running on time is not a reality for most of my doctor visits so far, they keep saying that the radiation is going to be only 30 minutes from getting out of my car to getting back in, we shall see. I did read your thread and am encouraged you are able to work. I am the sole support of my family and have a business with 4 employees, and I am the rainmaker. I take responsibility very seriously and do not want to end up losing my small group health insurance plan, house, car, etc in this challenging time. What a crazy ride this illness has been for you and I am hoping you have complete healing.

retiredteacher, very good news on your response. I am hoping for that myself. I appreciate the tip about waiting 30 minutes after eating a meal before ingesting the Xeloda and will incorporate that into my regimen too.

Mercy110 I am so sorry to hear about your mum and so appreciate your reaching out to me. I keep reminding myself that the Spirit that raised Jesus from the dead, lives in me too. I find great comfort knowing He is ever with me and walking this path holding my hand.

Tomorrow is my first day of radiation and taking the first dose of 3-500mg tablets, I am so far out of my comfort zone, it really helps knowing so many others have walked this path and done well. I drink about 80 to 100 ounces of water a day, and read Xeloda is very water soluble I was concerned I would be washing out most of the dosage prior to my afternoon appointments between 2-3pm if I took it at 7am and 7pm. That would be the most convenient timing for me, but I was concerned about compromising the potential results.
DX: 2/21/2018 Rectal Cancer: T3c N2 M0, Intramucosal Adenocarcinoma
3/20/2018 Radiation 45gy in 25 fractions, while taking 3000mg Xeloda only radiation days starts 3/28/2018
5/8/2018 Completed Chemoradiation with 5 additional Boosts
6/29/2018 Started 4000mg Xeloda 14 days on and 7 days off. Oxaliplatin Infusion with Power Port.
Joshua 1:9 Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.

NHMike
Posts: 1796
Joined: Fri Jul 21, 2017 3:43 am

Re: Life Earthquake: Wednesday Feb 21 Rectal Cancer T3C N2 M0

Postby NHMike » Wed Mar 28, 2018 8:53 am

I hope that things went well for you this morning.

The radiation will get tougher about two weeks in as your body gets a cumulative effect from the chemo and the radiation. I found that it got quite painful after three or four weeks and it was pretty difficult. The radiation issues went away for me two weeks after the last treatment. I use Depends Shields for about four weeks to deal with some leaking issues. You may have read it in my thread but the Xeloda and radiation can really whack your red blood count and white blood count which means that you won't have as much energy and that you will be more susceptible to infections. They tell you in the training session to avoid getting cut and avoid getting sick. Well, that's pretty hard in modern society.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

Deb m
Posts: 441
Joined: Tue Jan 14, 2014 10:08 am

Re: Life Earthquake: Wednesday Feb 21 Rectal Cancer T3C N2 M0

Postby Deb m » Wed Mar 28, 2018 9:49 am

My husbands cancer was in his ascending colon, so I can't relate exactly to your treatments because they are different than those for colon cancer. I can however unite my prayers with yours. Prayer was they only thing that kept me sane through out the whole ordeal. It's just our cross in life that Our Lord wants us to carry. He will give you the strength to do so.

Praying for your well being along with everybody on the board.

Have a Holy, Happy Easter.

Aqx99
Posts: 403
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Life Earthquake: Wednesday Feb 21 Rectal Cancer T3C N2 M0

Postby Aqx99 » Wed Mar 28, 2018 4:07 pm

I was diagnosed with rectal cancer on February 21, 2017. I am just so glad that I have the medical team that I do. I credit my primary care physician with saving my life. Just remember, our treatment is a marathon, not a sprint. It can be downright exhausting. Take time for rest whenever you can, and don't be afraid to ask others for help. I have found it very helpful to join the GI cancer support group at my cancer center. Being around others who have been there really helps. I also see the oncology counselor at my cancer center.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Dx, Age 39
2/21/17 CEA 0.9
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Dx w/ovarian cancer
9/6/17 CA 125 11.1
11/27/17 CEA 2.6
12/5/17 CT NED
12/13/17 CEA 2.9
1/11/18 CA 125 8.6
1/23/18 Reversal
3/21/18 CT enlarged thymus
4/6/18 PET NED
7/10/18 CT NED
7/11/18 CEA 2.6
9/18 Bilateral Prophylactic Mastectomy

SpringerSpanielMommy
Posts: 23
Joined: Fri Mar 23, 2018 8:52 pm

Re: Life Earthquake: Wednesday Feb 21 Rectal Cancer T3C N2 M0

Postby SpringerSpanielMommy » Wed Mar 28, 2018 7:01 pm

NHMike, I appreciate the hint about the Depends Shields, I had not even thought of that happening to me, and they did say I will start to have fatigue end of next week from the combination of treatments. Staying without cuts or injuries, or being around sick people is going to be a challenge. I will do the best I can at that. Your journey has been inspiring to me, and I really appreciate you sharing this chapter of your life for those that are behind you.

Deb M, May your family's Holy Week be filled with many blessings and happy times with family and friends. We are to share one another's burdens and I so appreciate your reaching out to me.

Aqx99, Wow, you are so right that this is a marathon and not a sprint, I am going to remind myself of that as this exhausting journey continues. Our center offers the counselor and group support, my struggle is with working full time and fitting in all the medical treatment appointments, there is only so much time available, my daughter saw the counselor today and it was a big help and encouragement to her too. I pray that you will have healing and am grateful you are here to help me too.

Just thought I would give everyone an update. The mail order chemo drugs finally did arrive this afternoon and I took my first dose at 1:30pm and I get to eat something at 1am and then take the dose at 1:30am. M-F weekends off from drug, so there is that. I bought Udderly Smooth which I am to use every morning and night and sleep with socks and gloves on and I checked the multivitamin I take to see that it has 100% dose of B-6 which it does and the doctor said that is pretty much all I can do to help prevent hand foot syndrome from developing.

They told me today to start on a very low fiber diet with limited fresh fruit and vegetables. Any vegetables very well cooked and avoid broccoli, cauliflower, Brussels, onions, beans, garlic, tomatoes. Pretty much everything we love and eat a lot of, so dinner was a baked chicken thigh and mashed potatoes. Did not eat the fresh steamed broccoli.

For those interested I asked them to explain the safety procedures since I read about the Therac-25 (thank you NHmike) and since my first treatment was delayed a day because of the "machine being broken" and I know of the AI program this machine uses I MUST know and understand what their procedure is before submitting to treatment and they told me:
1. There is a physicist in the property at all times.
2. There are extensive tests done daily before the machines can be used for therapy on patients.
3. There are test X-rays done before treatment to ensure while you are lined up with the laser marks matching up exactly on the marks on your body from the simulation in the exact same position (on my stomach, with a big hole in table for abdomen to fall through to move as much small intestine as possible out of the way, and a very full bladder pushing and protecting small bowel) the radiation oncologist ensures all looks perfect and then the very exact designed treatment is administered.
4. My radiation oncologist day to work there is Tuesdays.
5. I am being administered 45 grays in 25 fractions.

My time tomorrow and Friday is 2:30pm and they said arrive exactly on time and I will be out of the building driving away in 20 minutes. The bulk of the time is spent changing clothes and getting lined up.

Thanks for praying and caring.

Besides all my prayers and words of faith for Amanda and me this is what I repeat every. Single. Session. We. have. Wise words from another cancer fighter: "By virtue of your incredible potential to save my life, I reject all notions of you as a poison or toxin in my body. You are not my enemy. Our common enemy is the cancer in my body. You are my most powerful weapon in this war. I will will my body, mind and spirit to accept and embrace whatever collateral damage on my body you cause so long as you do your job. Collateral damage is the price of war and I am willing to pay that price so long as victory is ultimately mine."

The diet will be challenging I eat a LOT of fiber stuff…….I am going to remember that God is FOR me and not AGAINST me, and this will not break me. This will not steal our joy.
Psalm 46 and Psalm 91:4. Clinging. Rejoicing. Praying
DX: 2/21/2018 Rectal Cancer: T3c N2 M0, Intramucosal Adenocarcinoma
3/20/2018 Radiation 45gy in 25 fractions, while taking 3000mg Xeloda only radiation days starts 3/28/2018
5/8/2018 Completed Chemoradiation with 5 additional Boosts
6/29/2018 Started 4000mg Xeloda 14 days on and 7 days off. Oxaliplatin Infusion with Power Port.
Joshua 1:9 Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.

NHMike
Posts: 1796
Joined: Fri Jul 21, 2017 3:43 am

Re: Life Earthquake: Wednesday Feb 21 Rectal Cancer T3C N2 M0

Postby NHMike » Wed Mar 28, 2018 7:15 pm

One minor point about mail-order chemo drugs: I spent 3-5 hours on the phone with them to get the drugs during Neo-Adjuvant Chemo (what you're on). Fortunately I only had to do it twice. There can be mixups between your oncologist's office and the mail-order pharmacy and I think that it's best to try and get your drugs a couple of days early so that there are a few days if there's a problem. For Adjuvant chemo, they screwed up the orders for the first four cycles. The fifth one went smoothly.

On marathons, I found it helpful to read signatures of posters so that you can get a timeline of their journey from diagnosis to treatment to, ideally NED (No Evidence of Disease). The abbreviations can be confusing but you'll be an expert if you read here regularly.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

Aqx99
Posts: 403
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Life Earthquake: Wednesday Feb 21 Rectal Cancer T3C N2 M0

Postby Aqx99 » Thu Mar 29, 2018 1:25 am

A word of advice on diet and, by extension, bowel movements. First of all, enjoy whatever you want to eat now. Once you have surgery, you will be limited on what you can eat. Plus, once adjuvant chemo starts, you may lose your appetite. I lost my appetite and everything tasted like wet cardboard. Eat as many fresh veggies as you can get your hands on. When it comes to bowel movements, be very careful about getting constipated. Radiation makes the tissue very fragile, and you can cause a tear by pushing too hard. By the end of radiation, I was taking Miralax twice a day to keep things running smoothly.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Dx, Age 39
2/21/17 CEA 0.9
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Dx w/ovarian cancer
9/6/17 CA 125 11.1
11/27/17 CEA 2.6
12/5/17 CT NED
12/13/17 CEA 2.9
1/11/18 CA 125 8.6
1/23/18 Reversal
3/21/18 CT enlarged thymus
4/6/18 PET NED
7/10/18 CT NED
7/11/18 CEA 2.6
9/18 Bilateral Prophylactic Mastectomy

NHMike
Posts: 1796
Joined: Fri Jul 21, 2017 3:43 am

Re: Life Earthquake: Wednesday Feb 21 Rectal Cancer T3C N2 M0

Postby NHMike » Thu Mar 29, 2018 7:57 am

Aqx99 wrote:A word of advice on diet and, by extension, bowel movements. First of all, enjoy whatever you want to eat now. Once you have surgery, you will be limited on what you can eat. Plus, once adjuvant chemo starts, you may lose your appetite. I lost my appetite and everything tasted like wet cardboard. Eat as many fresh veggies as you can get your hands on. When it comes to bowel movements, be very careful about getting constipated. Radiation makes the tissue very fragile, and you can cause a tear by pushing too hard. By the end of radiation, I was taking Miralax twice a day to keep things running smoothly.


The plan in the original post had Xeloda/Radiation for 6 weeks and then what I would guess is XELOX - there's no indication of surgery in the OP. The tumor is quite large so it may be that they are doing the Neo-Adjuvant and what we call Adjuvant first. If there is a Pathalogical Complete Response, then surgery might not be needed. If surgery is needed, then the additional shrinkage may make it a lot easier with less needed to be removed. I've read about some people using this protocol recently. I could be wrong and there might be surgery in-between. Perhaps the OP could indicate if her team talked about surgery.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

Deb m
Posts: 441
Joined: Tue Jan 14, 2014 10:08 am

Re: Life Earthquake: Wednesday Feb 21 Rectal Cancer T3C N2 M0

Postby Deb m » Thu Mar 29, 2018 8:11 am

Your outlook on everything is great! In some ways, I think that's the most lethal weapon in the fight.

Keep us updated,

Many rosaries will be said for you along with everybody fighting this disease.


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