Rectal cancer (Stage 3A) diagnosed late June 2017

Please feel free to read, share your thoughts, your stories and connect with others!
User avatar
susie0915
Posts: 865
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 » Wed Feb 07, 2018 9:08 am

This is really the last thing you need to deal with while going through chemotherapy treatments. Mine were always sent from the pharmacy at my cancer hospital, or I would pick up when I had an appointment with my oncologist since the pharmacy was right there. I hope the next time there will get their sh*t together. Good luck with your infusion today, I hope the reduced oxi helps with your side effects.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, 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
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

NHMike
Posts: 1803
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Feb 07, 2018 9:13 am

susie0915 wrote:This is really the last thing you need to deal with while going through chemotherapy treatments. Mine were always sent from the pharmacy at my cancer hospital, or I would pick up when I had an appointment with my oncologist since the pharmacy was right there. I hope the next time there will get their sh*t together. Good luck with your infusion today, I hope the reduced oxi helps with your side effects.


They changed their name to OptumRX. I looked at online reviews and they were 1/5 or 1/10 with customers stating that they would give them negative numbers if possible. So management knows and I'll just have to put up with this for five more times. I will let my insurance company know of their QA problems though. I'd love to get the Xeloda at my local pharmacy. I'd need to find out the cost differential for doing this though and it could be substantial.
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

James65
Posts: 377
Joined: Thu Mar 06, 2008 9:41 am
Location: Exeter, NH
Contact:

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

Postby James65 » Wed Feb 07, 2018 9:34 am

I wonder if your oncologist's office or the hospital s/he is in or connected to would be able to get the drug more cheaply and reliably for you?
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.

NHMike
Posts: 1803
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Feb 07, 2018 9:41 am

James65 wrote:I wonder if your oncologist's office or the hospital s/he is in or connected to would be able to get the drug more cheaply and reliably for you?


I will ask United Healthcare but I'd guess that the answer would be no. Maybe at a place like Dana Farber but probably not here.

Infusion at 80% underway and I have another 1:50. Hoping to get out of here before the big snowstorm starts. We're forecast for 3-5 inches (down from 5-9 earlier) but with freezing rain this evening instead of snow. So 3-5 inches of snow with a nice glaze of ice on top. I'll be at home - maybe clearing off the roof tonight.
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

James65
Posts: 377
Joined: Thu Mar 06, 2008 9:41 am
Location: Exeter, NH
Contact:

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

Postby James65 » Wed Feb 07, 2018 9:56 am

We have the same forecast out here in the Seacoast. I hate this middling weather. I liked the cold and when it's warm, but 30 to 40 degrees gets in my bones.

Do you have United Healthcare through Medicare? I think that's what I have for prescription coverage too. One person to touch base with is the oncology social worker. S/he may have dealt with this issue in the past and can get the docs moving in a good direction for you. Also, what hospital are you at? My brother is a doctor in Nashua and I could get his thoughts on the issue. Feel free to email: james@orchardwriting.com.
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.

NHMike
Posts: 1803
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Feb 07, 2018 10:04 am

Yes, it's UNH though through private insurance. I have not worked with a social worker. My doctors are fine - it's the other end that's the problem. It's basically the same experience that I've had with McKesson, Verizon and Comcast. Fortunately I'm good with dealing with poor corporate customer service - but it's time-consuming. I'm at Dartmouth-Hitchcock in Nashua. I can put up with it if there's a known endpoint. If it were ongoing, then I'd push harder for a permanent solution.
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

NHMike
Posts: 1803
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Feb 07, 2018 10:06 am

My wife sent me a bunch of pictures this morning from Singapore. She's buying a rental property there. The building is gorgeous and there are a bunch of shops and hawker stalls on the first floor. It's near a subway station as well so convenient for commuting. I wouldn't mind being there right now. It's 9 miles from the equator so probably hot and humid. The downside would be not being able to consume cold drinks.
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

Caat55
Posts: 539
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Wed Feb 07, 2018 11:14 am

Mike,
I have been able to get my Xeloda at the hospital pharmacy. We only have one oncologist, rural hospital. They ordered it for me and I pick it up at my appointments.
Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018

NHMike
Posts: 1803
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Feb 07, 2018 1:22 pm

The left a message and I called back to place the order. They were going to send out another full batch. I asked why as I already have 28 of them and these little pills cost a small fortune. I don't want to increase costs to my insurance company for something that I would throw out. So I'm on the phone and they're trying to fix the order. I can't believe the gross level of incompetence. She wanted to charge me a $10 copay as well, so I explained that they already charged me a $100 copay. She checked and said that there would be no copay. So we're dragging on about another half-hour so far.
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: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby Aqx99 » Wed Feb 07, 2018 4:35 pm

My insurance refused to let me use the pharmacy at my cancer center for my capecitabine. I had to use their selected mail order pharmacy. Even after my oncologist lowered my dose, they still sent the original amount of pills. I gave up trying to explain things to them.
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: 1803
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Feb 07, 2018 6:03 pm

Aqx99 wrote:My insurance refused to let me use the pharmacy at my cancer center for my capecitabine. I had to use their selected mail order pharmacy. Even after my oncologist lowered my dose, they still sent the original amount of pills. I gave up trying to explain things to them.


I could have just taken the extra pills and save half an hour on the phone but I was at the kitchen table with my laptop working and the phone was next to me so it didn't cost me much outside of leaving my phone on. The 112 tablets cost about $6,000 so 28 would be $1,500 and I have no doubt that they would have billed my insurance company for it. It would not have cost me anything in terms of premiums and copays but it would add to the tab a bit next year for everyone in my company.

That reminds me: I need to send a box back to McKesson where they shipped a $600 package of stuff to the wrong address. It's been sitting on a table in the basement for a month. They didn't charge for the replacement but with chemo and cold weather and a busy work schedule - I haven't been motivated to call them to get a return sticker and then bring it to UPS.
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

NHMike
Posts: 1803
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Thu Feb 08, 2018 10:55 am

My numbers came back today: CEA stable from last week at 2.2 but a lot of the other numbers improved a little - I guess that's to be expected taking a week off chemo. This morning was painful as I spent 20 minutes scraping snow and ice off the cars. I used really thick and waterproof gloves which helped somewhat. Deep freeze tomorrow and then it will be in the 40s this weekend which will be great. We got about 3 inches of snow on the roof thought there was five on the car - I guess some falls off due to the slope. At any rate, I don't clear the roof for three inches and it should be gone by next week.

I need to fix the stove too as it's out. We have a toaster oven and the electric kettle for cooking right now.
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

NHMike
Posts: 1803
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Thu Feb 08, 2018 3:44 pm

I got a call from OptumRX and they said that they were going to refund me the $100 copay from the first order and they charged me $10 yesterday as a copay for the order that I just received. They said that they wouldn't bill me the $10 yesterday when they placed the order. So they basically lied yesterday. I will need to look out for the reimbursement as credits always take longer than charges.

I suspect that they've overcharged me a few hundred dollars on previous orders as the copays weren't in line with what I recall from my plan renewels. But it's hard to go through every single bill when you're dealing with so much.
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

NHMike
Posts: 1803
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sat Feb 10, 2018 8:29 am

Just another Xelox cycle: very tired, mouth tastes strange, woke up several times to empty the bag and lots of watery output, cold sensitivity, etc. Painful, annoying, etc. - and unfortunately getting used to it.

Temps are freezing to low 50s for the next 15 days (the highs) so that should be really nice.
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

heiders33
Posts: 306
Joined: Sat Nov 04, 2017 11:08 am

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

Postby heiders33 » Sat Feb 10, 2018 10:18 am

Sorry about your side effects. I just had my last infusion at a 50% reduction, and while the cold sensitivity is basically non-existent (yay!) I'm still experiencing fatigue. I slept about nine hours last night, and now I feel like I need another nap. Granted this reflects cumulative side effects, but it shows this stuff is no joke. I hope that you feel better soon. I'm also in the Northeast and grateful for the above freezing weather.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS G12A
June-July 2017: 28 days of XEL/radiation
Sep 2017: laparoscopic LAR/loop ileostomy
Oct 2017 - February 2018: XELOX six rounds
Mar 2018: reversal
Apr 2018: CEA 2.1, normal blood counts
May 2018: CT liver spot
Aug 2018: Abnormal PET, CEA 2.4
Sep 2018: robotic and laparoscopic liver resection with HAI pump
Oct 2018: Clear CT and colonoscopy, CEA 1.7, begin six months FUDR and FOLFIRI


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Google [Bot] and 29 guests