Rectal cancer (Stage 3A) diagnosed late June 2017

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prs
Posts: 104
Joined: Sat Dec 12, 2015 7:09 pm
Location: Central California

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby prs » Fri Aug 11, 2017 8:54 am

Mike, for the next four weeks you need your body to focus entirely on shrinking your tumor.

Maybe take it easy on the exercise so your body's attention isn't diverted to fixing muscle aches and strains?
Peter, age 65 at dx
DX 4 cm x 4 cm very low rectal adenocarcinoma into the sphincters 01/15
Stage III T3 N1 M0 with two suspicious lymph nodes
26 sessions IMRT radiation with 1,000 mg Xeloda twice per day 03/15 to 04/15
Complete clincal response to the chemoradiation...the tumor shrank completely away 06/15 :D
No surgery...Habr-Gama watch and wait protocol instead
Xelox chemotherapy 07/15-12/15
MRI and rectal exam every three months starting 07/15
MRI and rectal exam every six months starting 07/17
NED

NHMike
Posts: 373
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Fri Aug 11, 2017 2:09 pm

I've heard varying things on exercise - some say to get as much as you can and some saying not to. I should look for some research on this stuff.

What might be better is decreasing the intensity level of exercise though. An example would be walking instead of running - it's just that I hate not running.

Research has found no harmful effects on patients with cancer from moderate exercise and, in fact, has demonstrated that those who exercised regularly had 40% to 50% less fatigue, the primary complaint during treatment. (See Fighting Cancer Fatigue.)
...
Your goal should be at least 30 minutes of aerobic exercise five days a week or more. ...


https://www.nccn.org/patients/resources ... rcise.aspx

Researchers at the University of Rochester Wilmot Cancer Institute discovered something simple and inexpensive to reduce neuropathy in hands and feet due to chemotherapy--exercise.

https://www.sciencedaily.com/releases/2 ... 051004.htm

In the past, people being treated for a chronic illness (an illness a person may live with for a long time, like cancer or diabetes) were often told by their doctor to rest and reduce their physical activity. This is good advice if movement causes pain, rapid heart rate, or shortness of breath. But newer research has shown that exercise is not only safe and possible during cancer treatment, but it can improve how well you function physically and your quality of life.

https://www.cancer.org/treatment/surviv ... tient.html
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm.
Xeloda 3,400 mg/day + radiation 07/31/17 - 09/08/17.
CEA 2.7; after 14: 1.9; after 28: 1.8.
KRAS Mutant KRAS p.Gly12Asp
10/06/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%).
Surgery Scheduled: 10/30/17

veckon
Posts: 95
Joined: Thu Jul 27, 2017 7:44 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby veckon » Fri Aug 11, 2017 2:29 pm

For what it is worth I asked my oncologist at Sloan Kettering about exercise and he said not to stress out about not being to do as much as I was used to, understatement of the century, but that I could do as much as I felt comfortable with. I found low impact stuff like walking or using a elliptical to help a lot with fatigue. Regular, moderate physical activity also helped keep bowels regular, despite massive amount of pain. Personally I think Mike is approaching this from a healthy perspective. This disease can strip us of our passions, and I think it is positive to try to maintain who you are and what you enjoy doing as much as possible, so long as you are not hurting yourself.
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

prs
Posts: 104
Joined: Sat Dec 12, 2015 7:09 pm
Location: Central California

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby prs » Fri Aug 11, 2017 3:42 pm

I'm in favor of moderate exercise during treatment, I just think it wouldn't be wise to overdo it.

A strained muscle is the last thing you need when you have to make a dash for the restroom. :P
Peter, age 65 at dx
DX 4 cm x 4 cm very low rectal adenocarcinoma into the sphincters 01/15
Stage III T3 N1 M0 with two suspicious lymph nodes
26 sessions IMRT radiation with 1,000 mg Xeloda twice per day 03/15 to 04/15
Complete clincal response to the chemoradiation...the tumor shrank completely away 06/15 :D
No surgery...Habr-Gama watch and wait protocol instead
Xelox chemotherapy 07/15-12/15
MRI and rectal exam every three months starting 07/15
MRI and rectal exam every six months starting 07/17
NED

NHMike
Posts: 373
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Sun Aug 13, 2017 3:08 pm

prs wrote:I'm in favor of moderate exercise during treatment, I just think it wouldn't be wise to overdo it.

A strained muscle is the last thing you need when you have to make a dash for the restroom. :P


I'm trying to figure out moderate. I'd have to do those leg lunges every two to three days to maintain strength so that it wouldn't get sore every time. I have an alternate bodyweight exercise that would work the same muscles at a lower load but it's not as efficient. Leg lunges take one minute and provide a considerable workout.

I didn't take Miralax for most of the week and stools got harder towards the end. I'm wondering if radiation and/or Xeloda make me more constipated than the opposite. The Radiology doctor said that I was in the middle or balance of firm stools and that things should loosen up a lot after the third week. We'll see what happens this week.

My goal today is 10,000 steps (I'm at 7,500 right now with lots of time left in the day) based on another poster on another board telling me that she does 10,000 steps per day at the urging of her fitbit. 10,000 steps per day is around the top 35% from a chart that I saw. It's a common recommended minimum level of activity to improve health. I think that I've been doing about 5,000 steps per day since diagnosis.

My mother called looking for an update. She asked me if my hair was falling out and I said no. If anything, I have the opposite problem - facial hair keeps coming in and I can't closely shave with a razor for fear of cutting myself. So I shave without getting too close to the skin. My hair grows fairly fast and I'm hesitant about using scissors too close to myself. She asked about other, stereotypical, chemo symptoms and I said that I had some issues but nothing major so far. She mentioned that she heard that gold was being used in chemo treatments. I told her that I wasn't aware of gold usage in chemo drugs but that I would likely be using platinum-based drugs in the future. And she assumed that I wasn't working during the chemo but I told her that I was and that most people did according to my oncology nurse. She was an RN for her career so she knows more about the medical area than most but it seems that you need to either have cancer or care for someone with cancer to know what's happening with it. We talked a bit about some of the new medications that seem to cure cancer that work on some patients and about some people staying on chemo drugs for maintenance while waiting for the pharmaceutical industry to develop a cure for their cancer.

I chatted with my son about BRAF V600E and KRAS last night and he told me that he's done some work on those two in the past and did some MSI work last week.

He also described some of the sequencing technology used in genetic testing. In the old days, they could look for specific genes or sometimes specific pairs using various older methods. With "Next Gen Sequencing" they can look at a whole bunch of genes with one test. So this can greatly reduce costs if there's a need to examine a bunch of things or it can provide researchers with far more data to do analysis on known cancer genes. A lot of this stuff is way over my head but it's nice to be able to absorb a little of it. I'm hoping that I get genetic results back this week as I think that they've had the biopsy for a week now.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm.
Xeloda 3,400 mg/day + radiation 07/31/17 - 09/08/17.
CEA 2.7; after 14: 1.9; after 28: 1.8.
KRAS Mutant KRAS p.Gly12Asp
10/06/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%).
Surgery Scheduled: 10/30/17

JJH
Posts: 164
Joined: Mon Apr 24, 2017 7:26 am
Location: Europe

Re: Step counter

Postby JJH » Tue Aug 15, 2017 1:58 am

NHMike wrote:...
My goal today is 10,000 steps (I'm at 7,500 right now with lots of time left in the day) based on another poster on another board telling me that she does 10,000 steps per day at the urging of her fitbit. 10,000 steps per day is around the top 35% from a chart that I saw. It's a common recommended minimum level of activity to improve health. I think that I've been doing about 5,000 steps per day since diagnosis...

A step counter is a great motivating device and you can buy a good one for about $20. When I use my step counter, I wear it all the time and reset it every day. I usually have about 7,000 steps a day, but my goal should be the 10,000 step gold standard.

https://images-na.ssl-images-amazon.com/images/I/81ifIrLqi7L._SL1500_.jpg
DX 2012: Stage IIc
Locations: upper-rectum T4b + mid-sigmoid T4b
Surgery: Open LAR + temp ileo
TX: chemo/rad (28 days) + Xelox (3 cycles)
Ileo reversal
5 years surveillance
7/3/2017: Final 5-year report -
"complete remission ... cured'

NHMike
Posts: 373
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Tue Aug 15, 2017 6:50 am

I'm definitely back into constipation mode. Things were very loose last week and it was great going every day. Then late last week they got harder and I started the MiraLax again on Saturday. I had one difficult one and it's only been tiny pieces since then so I'm back to getting worried again. Is the tumor growing? Do I have some kind of blockage? Am I eating too little? The MiraLax, for two days, was just draining out slowly without bringing any poop with it so that's concerning. I may try irrigation tonight to see whether there's anything there or if it's stuck higher up. The radiologist said that stools should get a lot looser this week from the radiation. At this point, I think that that would be welcome.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm.
Xeloda 3,400 mg/day + radiation 07/31/17 - 09/08/17.
CEA 2.7; after 14: 1.9; after 28: 1.8.
KRAS Mutant KRAS p.Gly12Asp
10/06/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%).
Surgery Scheduled: 10/30/17

NHMike
Posts: 373
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Wed Aug 16, 2017 10:37 am

Be careful of what you wish for. The soupy stuff came back after the radiation treatment today. While I wouldn't call it feeling like razor blades, I was very careful in letting it out in case the pieces were hard. Things are definitely more sensitive down there today. I suspect that I'll be spending more time sleeping on my side than on my back tonight.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm.
Xeloda 3,400 mg/day + radiation 07/31/17 - 09/08/17.
CEA 2.7; after 14: 1.9; after 28: 1.8.
KRAS Mutant KRAS p.Gly12Asp
10/06/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%).
Surgery Scheduled: 10/30/17

prs
Posts: 104
Joined: Sat Dec 12, 2015 7:09 pm
Location: Central California

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby prs » Wed Aug 16, 2017 11:48 am

I think some of the side effects of radiation depend upon the location of the tumor. Mine was very low, right at the end of the anal canal and actually into the sphincter muscles. This meant more of the radiation had to pass thru my anal area, the first side effect was I sprouted a little forest of hemorrhoids around my anus that were not at all painful but about tripled the surface area that got really burned later on. About half way thru the treatment I developed an almost continuous leak of a clear, watery mucous. I solved this problem with extra large, extra strong, female maxi pads my wife kindly purchased for me.

The radiation is cumulative and over the weeks the area around my anus began to blister and eventually the blisters broke and started to bleed. I was prescribed a silver sulfadiazine cream that proved effective in dealing with the blisters. It's important to make sure you shower and get all the creams and stuff washed off before a radiation session, otherwise they may absorb the radiation and actually make the burns worse.

I had trouble sitting comfortably once the burn blisters set in but bought a couple of cushions like this:

http://www.cvs.com/shop/home-health-car ... uId=549435

from the local drug store and kept one in the car and one in the house. just remained standing in the radiation center waiting room as was too embarrassed to take my cushion with me. :oops:

I was told diarrhea would be a big problem during radiation but I was taking hydrocodone pain pills that supposedly cause constipation and these two seemed to balance each other out. However as my anal canal got more burned bowel movements became increasingly painful and the week after treatment ended was actually the worst.
Peter, age 65 at dx
DX 4 cm x 4 cm very low rectal adenocarcinoma into the sphincters 01/15
Stage III T3 N1 M0 with two suspicious lymph nodes
26 sessions IMRT radiation with 1,000 mg Xeloda twice per day 03/15 to 04/15
Complete clincal response to the chemoradiation...the tumor shrank completely away 06/15 :D
No surgery...Habr-Gama watch and wait protocol instead
Xelox chemotherapy 07/15-12/15
MRI and rectal exam every three months starting 07/15
MRI and rectal exam every six months starting 07/17
NED

NHMike
Posts: 373
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Wed Aug 16, 2017 11:59 am

I'll have to look into those cushions next time I'm at CVS. I just grabbed a few towels and am using them for now. I looked around at support chairs and found this:

Standing desks are pretty common at the office these days. I don't know if I could handle that for long periods of time though.

https://i.pinimg.com/originals/7c/48/cb ... 0b60f5.jpg
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm.
Xeloda 3,400 mg/day + radiation 07/31/17 - 09/08/17.
CEA 2.7; after 14: 1.9; after 28: 1.8.
KRAS Mutant KRAS p.Gly12Asp
10/06/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%).
Surgery Scheduled: 10/30/17

prs
Posts: 104
Joined: Sat Dec 12, 2015 7:09 pm
Location: Central California

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby prs » Wed Aug 16, 2017 1:06 pm

Mike, your treatment journey is going to be a bitch, but it sure beats the alternative. :)

I firmly believe it's good to be prepared for the worst, but keep on hoping for the best, and that hope helps you keep battling on thru the treatment.
Peter, age 65 at dx
DX 4 cm x 4 cm very low rectal adenocarcinoma into the sphincters 01/15
Stage III T3 N1 M0 with two suspicious lymph nodes
26 sessions IMRT radiation with 1,000 mg Xeloda twice per day 03/15 to 04/15
Complete clincal response to the chemoradiation...the tumor shrank completely away 06/15 :D
No surgery...Habr-Gama watch and wait protocol instead
Xelox chemotherapy 07/15-12/15
MRI and rectal exam every three months starting 07/15
MRI and rectal exam every six months starting 07/17
NED

NHMike
Posts: 373
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Wed Aug 16, 2017 1:39 pm

prs wrote:Mike, your treatment journey is going to be a bitch, but it sure beats the alternative. :)

I firmly believe it's good to be prepared for the worst, but keep on hoping for the best, and that hope helps you keep battling on thru the treatment.


I grabbed a towel and threw it on my car seat on the way to getting bloodwork drawn. I just walked around the waiting room instead of sitting. I have an idea of all of the other stuff but it's tucked away as I'm dealing with near-term pain and discomfort. This is one tough journey and I'm just starting though, amazingly, almost halfway through the first third.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm.
Xeloda 3,400 mg/day + radiation 07/31/17 - 09/08/17.
CEA 2.7; after 14: 1.9; after 28: 1.8.
KRAS Mutant KRAS p.Gly12Asp
10/06/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%).
Surgery Scheduled: 10/30/17

prs
Posts: 104
Joined: Sat Dec 12, 2015 7:09 pm
Location: Central California

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby prs » Wed Aug 16, 2017 2:40 pm

The way I discovered I had a tumor was I started having pain in my rectum during exercise. The pain started as my pulse began to increase. At the tumor board meeting all the Drs felt obliged to stick their fingers up my ass and feel my tumor. I guess actually touching a cancer tumor was a new experience for some of them; and this was a teaching hospital. Anyway after that experience the rectal pain from my tumor was continuous. :twisted:

My oncologist kindly prescribed 10 mg hydrocodone pain pills and I took them all the way thru the radiation treatment. As the tumor pain decreased, the blister burn pain increased. Towards the end of radiation I was waking up every four hours to pop a pill and change my maxi pad. :) The pain pills sure helped and I had no problem stopping taking them about two weeks after radiation treatment ended.
Peter, age 65 at dx
DX 4 cm x 4 cm very low rectal adenocarcinoma into the sphincters 01/15
Stage III T3 N1 M0 with two suspicious lymph nodes
26 sessions IMRT radiation with 1,000 mg Xeloda twice per day 03/15 to 04/15
Complete clincal response to the chemoradiation...the tumor shrank completely away 06/15 :D
No surgery...Habr-Gama watch and wait protocol instead
Xelox chemotherapy 07/15-12/15
MRI and rectal exam every three months starting 07/15
MRI and rectal exam every six months starting 07/17
NED

skb
Posts: 23
Joined: Tue Mar 28, 2017 2:00 pm

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby skb » Wed Aug 16, 2017 2:47 pm

Really sorry you have to go through this.

I struggled with bleeding too at the time of diagnosis but I do not think I bled as much as you. It seems to occur for low rectal cancers.
For me, the bleeding stopped , into the first one or two weeks into the chemoradiation and returned in the last week . So hang in there, it is going to get better.

The interns/grad students you are referring to, seems to be young doctors under the tutelage of the gods at major institutions. I also ran into them at the May Clinic and the Univ of Minn cancer center. They seemed more empathetic (not having dealt with numerous cases like their older counterparts) and generally had a pleasant disposition.

Regarding support groups, this online community is the best I have seen yet for colorectal cancer, you are already here. There are ostomy support groups in every city and I joined a site earlier called MeetAnOstomate. Large cancer centers like Dana Farber is sure to have an Ostomy support group.

Stage 3A is not too advanced. Wishing you many years ahead.

Just like you, I was bewildered when I was diagnosed. Why? How? Why me? No one knows for sure. Stress and diet seem to be important factors but none of my doctors agreed to it. I have given up meat and even the light social drinking I used to do .

Hang in there.

- sreekanth

----------------------------
Dx 3/21/17- T3N0M0- distal rectal cancer, 5cm tumor, adenocarcinoma, 2.5 cm from anal verge, slight internal sphincter involvement
4/18/17 to 5/22/17: Simultaneous chemo and radiation - oral pills- Xeloda 1800mg twice a day for 25 days, 200 Cgy radiation per day totaling 50Gy for 25 days
6/28/2017: biopsy from where tumor used to be reveals no invasive adenocarcinoma
8/09/17: MRI study at Mayo reveals no primary tumor left
8/11/17: deemed complete responder, placed in wait and watch
8/17/17: starting mop-up chemo with Folfox and oxaliplatin (IV infusion)
3/21/17: Dx T3N0M0- distal rectal cancer, 4.5cm tumor, 2.5 cm from anal verge, slightly into internal sphincters
4/18 to 5/22/17: chemoradiation - Xeloda 1800mg twice a day for 25 days, 200 Cgy per day
6/28/17: biopsy from where tumor used to be reveals no invasive adenocarcinoma
8/09/17: MRI reveals no primary tumor left
8/11/17: placed in wait and watch at Univ of Minn. Masonic Cancer Center
8/17/17: started mop-up chemo with Folfox and oxaliplatin (IV infusion), every other week for about 4 to 5 months

NHMike
Posts: 373
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Wed Aug 16, 2017 5:55 pm

prs wrote:I think some of the side effects of radiation depend upon the location of the tumor. Mine was very low, right at the end of the anal canal and actually into the sphincter muscles. This meant more of the radiation had to pass thru my anal area, the first side effect was I sprouted a little forest of hemorrhoids around my anus that were not at all painful but about tripled the surface area that got really burned later on. About half way thru the treatment I developed an almost continuous leak of a clear, watery mucous. I solved this problem with extra large, extra strong, female maxi pads my wife kindly purchased for me.

The radiation is cumulative and over the weeks the area around my anus began to blister and eventually the blisters broke and started to bleed. I was prescribed a silver sulfadiazine cream that proved effective in dealing with the blisters. It's important to make sure you shower and get all the creams and stuff washed off before a radiation session, otherwise they may absorb the radiation and actually make the burns worse.

I had trouble sitting comfortably once the burn blisters set in but bought a couple of cushions like this:

http://www.cvs.com/shop/home-health-car ... uId=549435

from the local drug store and kept one in the car and one in the house. just remained standing in the radiation center waiting room as was too embarrassed to take my cushion with me. :oops:

I was told diarrhea would be a big problem during radiation but I was taking hydrocodone pain pills that supposedly cause constipation and these two seemed to balance each other out. However as my anal canal got more burned bowel movements became increasingly painful and the week after treatment ended was actually the worst.


That's an interesting device. cvs.com doesn't indicate that they sell them locally though. But I'll take a look.

I just got back from CVS and my store doesn't carry it. I'll look around for it at other places.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm.
Xeloda 3,400 mg/day + radiation 07/31/17 - 09/08/17.
CEA 2.7; after 14: 1.9; after 28: 1.8.
KRAS Mutant KRAS p.Gly12Asp
10/06/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%).
Surgery Scheduled: 10/30/17


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