Rectal cancer (Stage 3A) diagnosed late June 2017

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NHMike
Posts: 553
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Tue Aug 29, 2017 12:11 pm

Just came back from a walk outside. I don't think that there's any way for me to get 10K steps per day but 6K is doable with 10K some days. Just too much work and cancer stuff. But I do need a constant reminder on strength training. I really hate the idea of not running for six-months to a year. I'm hoping to get some in before surgery if I heal up fast enough. Some tennis as well. I don't think that I could hit for more than 10 minutes right now and that wouldn't be fair to my partner.
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 - 09/08.
CEA 2.7; halfway through treatment: 1.9; after treatment: 1.8.
MSS, KRAS G12D
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%). 5.1 CM from AV.
Surgery: 10/30/17 LAR, Temp Ileostomy

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Shana
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Location: Sonoma, CA

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

Postby Shana » Tue Aug 29, 2017 12:30 pm

NHMike wrote:Just came back from a walk outside. I don't think that there's any way for me to get 10K steps per day but 6K is doable with 10K some days. Just too much work and cancer stuff. But I do need a constant reminder on strength training. I really hate the idea of not running for six-months to a year. I'm hoping to get some in before surgery if I heal up fast enough. Some tennis as well. I don't think that I could hit for more than 10 minutes right now and that wouldn't be fair to my partner.


I think you are doing incredible activity wise! I've been getting walking in whenever possible as I dodge chemo side effects but haven't been able to hit 5K yet. I have an upright stationary bike at home that I'm able to use but my stamina isn't what it used to be... I'm planning on returning to my gym soon, they have a special program for cancer patients in our community (membership not required) which is free and offers one on one trainer for 30 mins, twice a week and will actually waive my monthly reactivation fee.

Btw, I recommend Orgain brand protein drinks if you want some calories and low residue. Amazon, Walmart and Whole Foods carry them, they're a bit pricier but no HFC's and much tastier than Boost products. Premier protein is also good, best price at Costco or Amazon for sheer convenience.

Hang in there, your experience sounds really rough lately!

Shana
DX - 12/16
MSS - KRAS wild
Stage IV colon cancer with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17 - 2 wks on, 1 wk off to lessen side effects
CT-Scan 9/1/17. Shrinkage of liver mets (4 measurable) and no bowel blockage (surgery on 6/17 for blockage)
Removal and resection not on the table at this time as long as liver mets remain.
BB- aka colostomy is new high maintenance friend... she was a life saver
Living the new normal day by day :)

NHMike
Posts: 553
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Aug 30, 2017 6:42 am

I got in 15 minutes of stretching this morning and it felt great. Lots of popping joints through it. I'm generally only stretching once a week and it isn't enough as I can feel the lost flexibility when I do it. I should be stretching five days a week to increase flexibility but the morning radiation appointments make it harder as it's something I prefer doing early morning. The radiation place cancelled my appointment this morning due to a server problem so that saves me an hour of time today but pushes things back. They expect to be back to normal tomorrow.

The key to getting in a lot of steps is to do a little at a time.

Personal training is great stuff to show you what to do but, after that, it requires your desire to do it on a regular basis. I'm generally eating eggs for protein and might add a little cheese. But I might take a look at low-residue protein powders too.
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 - 09/08.
CEA 2.7; halfway through treatment: 1.9; after treatment: 1.8.
MSS, KRAS G12D
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%). 5.1 CM from AV.
Surgery: 10/30/17 LAR, Temp Ileostomy

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Shana
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Location: Sonoma, CA

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

Postby Shana » Wed Aug 30, 2017 10:31 am

Hope the extra day gives you some healing time but I know you probably want to power through the last few treatments and be done with it.
Good luck with that!

I'm finally able to do ab exercises, it'll be 3 months post op on September 5th. I have a 5 inch incision, colon was too distended for laprascopic procedure so healing has taken longer than I expected.

I'm definitely motivated, I lost significant muscle mass in a very short period of time while hospitalized and from chemo induced colitis which caused malnutrition along with crazy weight loss. TPN basically maintained my weight and allowed me to regain enough strength to be able to walk. I don't ever want to go through that again. Fighting cancer is hard enough work and the stronger I am the better. Just make sure you're getting adequate nutrition while avoiding high residue for your bowel comfort. It's truly a pain in the ass!

Take care
DX - 12/16
MSS - KRAS wild
Stage IV colon cancer with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17 - 2 wks on, 1 wk off to lessen side effects
CT-Scan 9/1/17. Shrinkage of liver mets (4 measurable) and no bowel blockage (surgery on 6/17 for blockage)
Removal and resection not on the table at this time as long as liver mets remain.
BB- aka colostomy is new high maintenance friend... she was a life saver
Living the new normal day by day :)

NHMike
Posts: 553
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Thu Aug 31, 2017 5:04 am

The paranoid side in me read a few articles about radiation errors. Modern radiotherapy machines are controlled by sophisticated computer systems and, in general, all computer systems have bugs in them. Or Quality Assurance defects. Methods have improved over the decades but so has complexity. A former co-worker worked on this machine back in the 1980s:

https://hackaday.com/2015/10/26/killed- ... therac-25/

So when they told me that a server was out and they're working to get it fixed, it bothered me. My treatments so far seem to be spot on as what's supposed to be happening, seems to be happening. But it's easy to worry when you hear about a hardware or other failure. There are other things that can cause radiotherapy accidents - incorrect dosage, communication errors, giving the treatment for another patient, etc. I didn't see any papers talking about recent problems though.

I ate a normal amount of calories yesterday as I was starting to feel run down. I haven't had a major poop in a few days but I expect to soon. Not having any major poops probably saved me some major pain but it will arrive sooner or later. My three sisters are going to visit me this weekend, probably to talk about life changes in their lives and mine and about our mother who's not in great shape. I'm going to prepare a list of things to do and how to manage things for my family before the surgery as there's always potential for death in surgery. I have a fair amount of time to do this though. Being a parent is tough when you have to deal with the issues of not being around.
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 - 09/08.
CEA 2.7; halfway through treatment: 1.9; after treatment: 1.8.
MSS, KRAS G12D
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%). 5.1 CM from AV.
Surgery: 10/30/17 LAR, Temp Ileostomy

Cured
Posts: 485
Joined: Thu Nov 27, 2008 10:53 pm
Location: 64 yr. old Male

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

Postby Cured » Thu Aug 31, 2017 6:46 pm

Mike, I am sorry to be late chiming in. I was in your shoes 9 years ago. I started with the Radiation and Chemo, then the rest and then the surgery. You see from my signature that I had most of my rectum removed. My surgeon is excellent and, as you are at Dana, certainly you will also have an experienced colo-rectal surgeon. You have actually completed the most miserable part of the journey. When you run, you just put one foot in front of another and focus on getting to the end. These treatments are an endurance trial. But having confidence that you will come out on the other side is essential.

Today had a colonoscopy. All is clear and pink, as it has been since the first colonoscopy, which I had a year after my surgery. My surgeon can't even see where anything was resectioned.
He doesn't want to see me for 5 years! (I turn 65 in a few months)

I AM CURED! I pray you will be able to say the same soon.
5-08:Stage 3 Rectal: 6/14 Nodes
Ace Surgeon Removed 90%Rectum & lots of Colon-Full Incision
Ileo Rev'd @6 Mos.
Radiation+5fu Pre-Surgery
FOLFOX 8 Cycles Done 1-09
Clear Scope 8-17; Clear CEA 2-17
Glory to God! Healed by prayers of many

NHMike
Posts: 553
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Thu Aug 31, 2017 8:11 pm

I've seen a few of your other posts and it's nice to see people returning here talking about how well they're doing. It does provide hope.

I'm somewhat of a pessimist by nature and worry about things that can go wrong or not according to plan and I see a fair amount of that on this board where Stage 2 or 3 becomes Stage 4. So I worry. But I'm working full time and trying to clean things up in case I'm not around so that my family can run on without me. Something I should have done anyways.

I'm basically managing though the chemoradiation and have another five days to go. Yes, it is painful and uncomfortable. I do think that the other parts could be tough too from what I've read. That is the surgery and the post-surgical chemo. But at least there's a break between them. It's nice to know that there are lots of folks that have dealt with mets successfully too. And I do know that biotech is making miraculous cures available, albeit at a price.

My genetic testing is done; I'm just waiting for the pathologist to email them to me. I don't expect that the results will be helpful in finding a targeted therapy and it's kind of late for that anyways. But it may provide some interesting information.
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 - 09/08.
CEA 2.7; halfway through treatment: 1.9; after treatment: 1.8.
MSS, KRAS G12D
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%). 5.1 CM from AV.
Surgery: 10/30/17 LAR, Temp Ileostomy

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susie0915
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Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

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

Postby susie0915 » Thu Aug 31, 2017 8:40 pm

I know it's hard not to worry. I still do even though the radiation oncologist told me that they were curing me when I first met with him. I still worry about that spot on my lung even though my oncologist says she's sure it's not a met. Even though my one year colonoscopy was perfect, cea has never been higher than 1, and all scans have shown ned since I finished pre adjuvant therapy I still have days I worry. Hoping the further away from ending treatment the less Ill worry. Just try to stay positive and think of all the great outcomes others on these boards have had. Hang in there you're almost done with your first stage
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev since
surgery to repair blockage. c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT

NHMike
Posts: 553
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sun Sep 03, 2017 6:30 am

My relatives came over yesterday. Two from the Boston area and two from the West Coast. The two from the West Coast came for some of my mother's care issues and maybe one is here for college stuff for her daughter. I gave a presentation of my situation, explained the course of treatment, the relative schedule, how it was going through the treatments, what's happening with research and clinical trials, etc. It was like giving a business presentation in my living room. One sister has known several people with cancer and she recently lost her brother-in-law's wife to a cancer that was treatable. There were apparently errors made in care and they didn't seek a second opinion despite being four hours away from Dana Farber and it was too late by the time they considered it. My sister had recommended going to Dana Farber but they didn't listen and they used the Hospital group that I'm using now for my local care. Cancer can take our loved ones pretty quickly sometimes. That sister has a few friends that have had stage 4 cancers and they're doing quite well - they use a local nutritional doctor that has resulted in better outcomes and fewer issues through treatment.

Quality of care, second opinions, nutrition - this stuff all matters as far as I'm concerned. And the knowledge that you get from this place can make a lot of difference in how you get through it.

I managed to get a bit of floor work in the morning and ran 1/2 mile and did a bit of weights in the afternoon. I could have done more but had persistent gas problems in the afternoon and into this morning. It's basically a feeling of discomfort and I go to the bathroom and oftentimes some of the tumor comes out (I hope it's the tumor - the coloration is very light). It feels like a lot of little pieces of it have been coming out the past two days. It would be nice if that's what's happening but it's making me feel a bit weak because of going to the bathroom a lot. The weather has turned cooler too and we're going to have a lot of rain today and I need to dig out the fall and winter clothes.

So week five was tough due to the radiation. I expect that week six may be similar and hopefully no worse. After that, it may be tough for a week to ten days but then it should start getting better. That's the impression that I get from others that I've asked.
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 - 09/08.
CEA 2.7; halfway through treatment: 1.9; after treatment: 1.8.
MSS, KRAS G12D
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%). 5.1 CM from AV.
Surgery: 10/30/17 LAR, Temp Ileostomy

Aqx99
Posts: 248
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Facebook Username: aqx99
Location: Pfafftown, NC

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

Postby Aqx99 » Sun Sep 03, 2017 6:40 am

You're right, a few weeks after treatment ends you will start to feel better. The boosts they gave me at my last three visits made me feel like crap for a while. The only persistent problem I had after radiation ended, and still have to this day, is tailbone pain. My radiation oncologist targeted the front of my tailbone as part of my treatment because she said the cancer can recurr there. I carry a cushion everywhere I go because sitting in a hard chair for any length of time is excruciating.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
Diagnosed at age 39
2/21/17 Diagnosis
2/21/17 CEA 0.9 ng/mL
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR with temp loop ileostomy, ovaries and fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 Started CapeOx, 6 Cycles
7/24/17 Diagnosed with precursor ovarian cancer
9/6/17 CA 125 11.1 U/mL
1/18ish Reversal

NHMike
Posts: 553
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sun Sep 03, 2017 6:49 am

Aqx99 wrote:You're right, a few weeks after treatment ends you will start to feel better. The boosts they gave me at my last three visits made me feel like crap for a while. The only persistent problem I had after radiation ended, and still have to this day, is tailbone pain. My radiation oncologist targeted the front of my tailbone as part of my treatment because she said the cancer can recurr there. I carry a cushion everywhere I go because sitting in a hard chair for any length of time is excruciating.


I have one of those cushions that I use in my office chair at home. I have an Aereo chair at the office and that seems comfortable enough so that I don't need the cushion. I would consider using the cushion for long drives. I had forgotten about the different radiation treatment for the last three days. They said that it's the same amount of radiation but the field is smaller, so, more concentrated.

One other thing is that there has been fluid leaking. It might be the tumor or MiraLax (didn't take it for past two days) but it's annoying having things a bit wet back there so I've used some old cloth diapers so that it doesn't get on my underwear and clothes. the issue is getting the placement and fit right because they are somewhat bulky. Reminds me of when our kids were young dealing with cloth diapers.
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 - 09/08.
CEA 2.7; halfway through treatment: 1.9; after treatment: 1.8.
MSS, KRAS G12D
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%). 5.1 CM from AV.
Surgery: 10/30/17 LAR, Temp Ileostomy

Aqx99
Posts: 248
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

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

Postby Aqx99 » Sun Sep 03, 2017 7:48 am

NHMike wrote:
Aqx99 wrote:You're right, a few weeks after treatment ends you will start to feel better. The boosts they gave me at my last three visits made me feel like crap for a while. The only persistent problem I had after radiation ended, and still have to this day, is tailbone pain. My radiation oncologist targeted the front of my tailbone as part of my treatment because she said the cancer can recurr there. I carry a cushion everywhere I go because sitting in a hard chair for any length of time is excruciating.


I have one of those cushions that I use in my office chair at home. I have an Aereo chair at the office and that seems comfortable enough so that I don't need the cushion. I would consider using the cushion for long drives. I had forgotten about the different radiation treatment for the last three days. They said that it's the same amount of radiation but the field is smaller, so, more concentrated.

One other thing is that there has been fluid leaking. It might be the tumor or MiraLax (didn't take it for past two days) but it's annoying having things a bit wet back there so I've used some old cloth diapers so that it doesn't get on my underwear and clothes. the issue is getting the placement and fit right because they are somewhat bulky. Reminds me of when our kids were young dealing with cloth diapers.


I know guys like to avoid the "lady aisle," but I would suggest getting yourself some pads. That way you can stick them to your underpants and they will stay in place. Plus, they are disposable. My husband thought I was nuts when I suggested it for him when he had a really bad boil lanced in his nether region, but he appreciated it when it started draining. Overnights are the longest and most absorbant. They are cheaper to buy than incontinence products, I compared prices.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
Diagnosed at age 39
2/21/17 Diagnosis
2/21/17 CEA 0.9 ng/mL
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR with temp loop ileostomy, ovaries and fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 Started CapeOx, 6 Cycles
7/24/17 Diagnosed with precursor ovarian cancer
9/6/17 CA 125 11.1 U/mL
1/18ish Reversal

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susie0915
Posts: 440
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

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

Postby susie0915 » Sun Sep 03, 2017 7:53 am

Hi Mike. You're almost there. I don't remember the last 3 days of radiation making anything worse than is had been the last couple weeks. I did soak in the bath every night sitting on a ring. Seemed to help. Also used a lot of aquaphor and slathered on my rear end. You will begin to feel better in about a week to ten days. Hang in there and good luck on your last three days of treatment.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev since
surgery to repair blockage. c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT

MissMolly
Posts: 423
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

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

Postby MissMolly » Sun Sep 03, 2017 8:11 am

Mike:
There are disposable pads made specifically for anal discharge. These pads are a game changer for anyone with annoying anal discharge. The pads are called "Butterfly Pads" and are available on Amazon.

Unlike women's menstral pads that can shift and move and not be in quite the right place to attend to anal discharge, Butterfly pads fit into the crease of the buttocks with a light adhesive backing to keep them in place.

I highly recommend "Butterfly Pads." Look for them on Amazon.
Karen
Devoted daughter to my father, diagnosed with stage 2 colon cancer Nov-2014.
Dear friend to Bella Piazza, former CC member.
I have a permanent ileostomy and offer advice on living with an ostomy.
I have been on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression and recurrent infection x 4 years. I transitioned to Hospice Sept-2016, but it was not yet my time. I am back on Palliative Care and live a simple life due to frail health.

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Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

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

Postby Maia » Sun Sep 03, 2017 8:34 am

Aqx99 wrote:but I would suggest getting yourself some pads. That way you can stick them to your underpants and they will stay in place. Plus, they are disposable. My husband thought I was nuts when I suggested it for him when he had a really bad boil lanced in his nether region, but he appreciated it when it started draining. Overnights are the longest and most absorbant. They are cheaper to buy than incontinence products, I compared prices.


Great advice! I hope you feel better soon, Mike.


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