Rectal cancer (Stage 3A) diagnosed late June 2017

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prs
Posts: 201
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 7:31 pm

Walgreens has them:

https://www.walgreens.com/store/c/duro- ... 72-product

I think most drugstores and also Walmart.
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: 2555
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Aug 16, 2017 7:45 pm

The link indicates that they don't sell them in stores. I checked the drug stores and WalMart. I was giving some thought as to buying a memory foam pillow and cutting out a piece. But I'll probably just order a pair from Amazon.

Update: Just ordered one of these types from Amazon and it should be here Friday.

The local Pep Boys had something like this available tomorrow but I wasn't sure what that meant exactly. At any rate, the other one should be good for three or four weeks and maybe after surgery for a while.
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; 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, 2/12 1.2
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
2/19: Clean CT

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Aug 16, 2017 8:03 pm

I've given up on the idea of running while I have the radiation issues unless they get a lot better. Walking, yes. Running would create too much friction. Sounds like I'm going to be doing a lot of yoga for the next couple of weeks.
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; 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, 2/12 1.2
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
2/19: Clean CT

veckon
Posts: 131
Joined: Thu Jul 27, 2017 7:44 am

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

Postby veckon » Thu Aug 17, 2017 7:37 am

NHMike wrote:I've given up on the idea of running while I have the radiation issues unless they get a lot better. Walking, yes. Running would create too much friction. Sounds like I'm going to be doing a lot of yoga for the next couple of weeks.


I am really sorry to hear this mike, I know how much you loved running based on your posts here. I got an elliptical for this reason and it helped me maintain desired levels of cardio without hurting nearly as much as running.
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

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Thu Aug 17, 2017 7:57 am

The radiology place gave me some Aquaphor samples this morning. They said that I can buy it in the baby department at CVS. The pain issues mostly were gone this morning so maybe the body adapts. But I'm getting these treatments every day so it will likely come back. I have to decide on hitting tennis balls later this morning. At the moment I'm inclined to give it a shot. I had a full night's sleep last night though I had some congestion this morning. My daughter says it's pollen. My wife was coughing this morning as well but it's just in the morning. I also see the Oncologist today. Halfway through radiation treatments right now and amazed that I'm here. Almost halfway through chemo too.
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; 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, 2/12 1.2
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
2/19: Clean CT

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

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

Postby DarknessEmbraced » Thu Aug 17, 2017 3:13 pm

I hope your appointment goes well!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Thu Aug 17, 2017 3:33 pm

They got my blood work and CEA went from 2.7 pre-treatment to 1.9 as of yesterday so heading in the right direction. I got the exact staging and it's T3N1M0. Might be N1B as I don't have the paper but it makes me 3B.

BTW, if I had started this a month earlier or maybe three weeks earlier, I think that I would have been 3A or maybe even 2. I felt the transition from the polyp into the muscle.

Doc said everything else looked good.

So yes, treatment is a bitch but it seems to be working.
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; 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, 2/12 1.2
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
2/19: Clean CT

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Aug 18, 2017 10:39 am

Coccyx pillow arrived. It helps and it's better than using towels and it allows me to sit for much longer periods of time but it's not 100% perfect. But at least I don't have to shift around to find more comfortable positions while working.
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; 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, 2/12 1.2
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
2/19: Clean CT

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Mon Aug 21, 2017 2:11 pm

Just placed the second order for Xeloda. The original order was for 25 days when it should have been for 28 so I spoke to the oncology nurse and she fixed it. My insurance company will only pay for four weeks of these kinds of drugs and then you have to renew the prescription. I took care of that today and there was no copayment (it was $180 for the original prescription) so drugs must be covered in max out-of-pocket.

I'm having the typical radiation issues but at least I'm mostly regular. It's not diarrhea but it's not hard either. It is actually nice as I seem to be having fewer false urges. I'm using toilet paper that I run under the faucet for two seconds to clean up and still thinking about the sitz bath.

One other thing on expenses: talking to the doctor (any doctor it seems) costs about $400. So if I'm feeling a bit under, and just chat for 15 minutes, it's $400. My part is $35 for the copay though I might be able to get that back. I think that I will probably not avail myself of doctors unless the problem is more urgent as, in most cases, the doctors just tell me what you guys here tell me. I would generally like to keep costs down for myself and the insurance company.
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; 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, 2/12 1.2
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
2/19: Clean CT

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

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

Postby DarknessEmbraced » Mon Aug 21, 2017 2:26 pm

I'm glad the coccyx pillow helps and that your Xeloda is ordered. I hope your chemo goes well!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

James65
Posts: 383
Joined: Thu Mar 06, 2008 9:41 am
Location: Exeter, NH
Contact:

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

Postby James65 » Mon Aug 21, 2017 2:47 pm

I have to say, I all but fell in love with my sitz bath. Definitely a nice thing to have while reading a book.
Diagnosed with stage III rectal tumor (though probably late stage II) January 2006.
Chemo/Radiation
Full APR Surgery
Folfox Chemo
So far NED.
Oops. Liver tumor diagnosed 10/13 after elevated CEA. Liver resection for 5cm tumor 12/6/13. So far so good.
Oops again, one tumor in each lung diagnosed 8/8/16. One too small to deal with and the other resected in late September. Wait and watch for now.
Oops, another lung Met in upper left lobe on edge of previous resection scar 11/11/19.

prs
Posts: 201
Joined: Sat Dec 12, 2015 7:09 pm
Location: Central California

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

Postby prs » Mon Aug 21, 2017 4:19 pm

NHMike wrote:I'm having the typical radiation issues but at least I'm mostly regular. It's not diarrhea but it's not hard either. It is actually nice as I seem to be having fewer false urges. I'm using toilet paper that I run under the faucet for two seconds to clean up and still thinking about the sitz bath.

Moist flushable wipes are another option:

https://www.target.com/p/flushable-mois ... lsrc=aw.ds

Available at Costco, Target, etc etc.
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

veckon
Posts: 131
Joined: Thu Jul 27, 2017 7:44 am

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

Postby veckon » Mon Aug 21, 2017 4:22 pm

NHMike wrote:Just placed the second order for Xeloda. The original order was for 25 days when it should have been for 28 so I spoke to the oncology nurse and she fixed it. My insurance company will only pay for four weeks of these kinds of drugs and then you have to renew the prescription. I took care of that today and there was no copayment (it was $180 for the original prescription) so drugs must be covered in max out-of-pocket.

I'm having the typical radiation issues but at least I'm mostly regular. It's not diarrhea but it's not hard either. It is actually nice as I seem to be having fewer false urges. I'm using toilet paper that I run under the faucet for two seconds to clean up and still thinking about the sitz bath.

One other thing on expenses: talking to the doctor (any doctor it seems) costs about $400. So if I'm feeling a bit under, and just chat for 15 minutes, it's $400. My part is $35 for the copay though I might be able to get that back. I think that I will probably not avail myself of doctors unless the problem is more urgent as, in most cases, the doctors just tell me what you guys here tell me. I would generally like to keep costs down for myself and the insurance company.


I think my hospital billing statements would probably give you a heart attack then, hehe. Including doctor, nursing work for infusions, and of course pembrolizumab (keytruda), it’s about $20K a month now after insurance discounts (15k of that is pembrolizumab alone). FOLFOX was cheaper drug wise (I think the cocktail is like a few hundred dollars by itself) but the infusion nursing costs are pretty high (they need nurses standing by at all times incase you have a reaction). Also you need your blood work done every time beforehand, etc.
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

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Mon Aug 21, 2017 4:39 pm

veckon wrote:
NHMike wrote:Just placed the second order for Xeloda. The original order was for 25 days when it should have been for 28 so I spoke to the oncology nurse and she fixed it. My insurance company will only pay for four weeks of these kinds of drugs and then you have to renew the prescription. I took care of that today and there was no copayment (it was $180 for the original prescription) so drugs must be covered in max out-of-pocket.

I'm having the typical radiation issues but at least I'm mostly regular. It's not diarrhea but it's not hard either. It is actually nice as I seem to be having fewer false urges. I'm using toilet paper that I run under the faucet for two seconds to clean up and still thinking about the sitz bath.

One other thing on expenses: talking to the doctor (any doctor it seems) costs about $400. So if I'm feeling a bit under, and just chat for 15 minutes, it's $400. My part is $35 for the copay though I might be able to get that back. I think that I will probably not avail myself of doctors unless the problem is more urgent as, in most cases, the doctors just tell me what you guys here tell me. I would generally like to keep costs down for myself and the insurance company.


I think my hospital billing statements would probably give you a heart attack then, hehe. Including doctor, nursing work for infusions, and of course pembrolizumab (keytruda), it’s about $20K a month now after insurance discounts (15k of that is pembrolizumab alone). FOLFOX was cheaper drug wise (I think the cocktail is like a few hundred dollars by itself) but the infusion nursing costs are pretty high (they need nurses standing by at all times incase you have a reaction). Also you need your blood work done every time beforehand, etc.


I read somewhere that Keytruda cost $150,000 per year though I've seen people cured in a month or two on it. One of my coworkers is taking a drug for lung cancer that's $9 or $ 15 thousand a month. He would be dead now without it. It isn't a cure yet but it keeps his tumor from growing. He will have to take it to survive until there is a cure. BTW, I've looked at the stocks of some of the companies that make this stuff and they're not necessarily doing that well. I guess that it's nice to have the revenues of some blockbuster drugs but I think that they have a lot of drugs that don't do well. I have no doubt that we could develop drugs that could work a lot better than what we currently use to cure many CRCs but a lot of the research and development interest and money go to types of cancer where there aren't good options. I am jealous of course but I also think that It is more fair.

I will likely get the Ox infusions and have to figure out where that is done at the local hospital. I'm not even sure that they do it there as I've never seen anyone doing it. They have a walled off section for the cancer center and I've been in the waiting room, exam roomies and conference room for training. The only time I recall infusion rooms was on a television show and I don't know how realistic that was. It may be that I would need to go to another hospital for infusions and there are two others in town. There are lots more in the Boston area but I'd rather do it locally.
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; 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, 2/12 1.2
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
2/19: Clean CT

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Mon Aug 21, 2017 4:43 pm

prs wrote:
NHMike wrote:I'm having the typical radiation issues but at least I'm mostly regular. It's not diarrhea but it's not hard either. It is actually nice as I seem to be having fewer false urges. I'm using toilet paper that I run under the faucet for two seconds to clean up and still thinking about the sitz bath.

Moist flushable wipes are another option:

https://www.target.com/p/flushable-mois ... lsrc=aw.ds

Available at Costco, Target, etc etc.


I was wondering if there was something like those available. For some reason I thought of Tucks Medicated Pads though I've never actually seen them. It would be nice to have something to bring into public toilets that I could carry in a pocket. the toilet paper approach currently works well, it's jus a bit of effort reaching over to the sink.
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; 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, 2/12 1.2
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
2/19: Clean CT


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