Rectal cancer (Stage 3A) diagnosed late June 2017

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NHMike
Posts: 1537
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Apr 11, 2018 10:59 am

Oxal symptoms are back. Nice not having these for a round. Feeling it in my fingers and eyes.
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 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
MSS, KRAS G12D
10/17: 2.7 x 2.2 x 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 cycles 12/17-6/18

NHMike
Posts: 1537
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Apr 11, 2018 5:23 pm

I received a big box in the shipping room along with notification. I was expecting the Xeloda pills and Illeostomy supplies. I assumed that they were Illeostomy supplies from the size of the box as the pills usually come in an envelope. I just checked the tracking information and BriovaRX said that it was delivered today. So I cut open the box and it was the pills but they were packed in a cold pack. It's two big pieces of Styrofoam and the pills were sitting on top of three cold packs. And they were cold!

There was a notice indicating that they ship them this way at certain times of the year. So I guess that I may be getting more of them in this form depending on where they are coming from. I think that I can use the styrofoam as a Yoga block.
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 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
MSS, KRAS G12D
10/17: 2.7 x 2.2 x 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 cycles 12/17-6/18

Aqx99
Posts: 402
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 » Fri Apr 13, 2018 10:10 am

NHMike wrote:I received a big box in the shipping room along with notification. I was expecting the Xeloda pills and Illeostomy supplies. I assumed that they were Illeostomy supplies from the size of the box as the pills usually come in an envelope. I just checked the tracking information and BriovaRX said that it was delivered today. So I cut open the box and it was the pills but they were packed in a cold pack. It's two big pieces of Styrofoam and the pills were sitting on top of three cold packs. And they were cold!

There was a notice indicating that they ship them this way at certain times of the year. So I guess that I may be getting more of them in this form depending on where they are coming from. I think that I can use the styrofoam as a Yoga block.


I got several deliveries of my pills in a styrofoam cooler with an ice pack. I kept the ice packs for use in lunch bags.
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: 1537
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Apr 13, 2018 10:42 am

Aqx99 wrote:
NHMike wrote:I received a big box in the shipping room along with notification. I was expecting the Xeloda pills and Illeostomy supplies. I assumed that they were Illeostomy supplies from the size of the box as the pills usually come in an envelope. I just checked the tracking information and BriovaRX said that it was delivered today. So I cut open the box and it was the pills but they were packed in a cold pack. It's two big pieces of Styrofoam and the pills were sitting on top of three cold packs. And they were cold!

There was a notice indicating that they ship them this way at certain times of the year. So I guess that I may be getting more of them in this form depending on where they are coming from. I think that I can use the styrofoam as a Yoga block.


I got several deliveries of my pills in a styrofoam cooler with an ice pack. I kept the ice packs for use in lunch bags.


The ice packs that I got aren't reusable, at least I don't think that they were. I will check the next time I get them (only two more). They might be useful in the future. I was thinking of using any additional Styrofoam blocks for bringing stuff to the beach.
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 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
MSS, KRAS G12D
10/17: 2.7 x 2.2 x 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 cycles 12/17-6/18

Caat55
Posts: 475
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Fri Apr 13, 2018 3:17 pm

I got oxi symptoms bad and more quickly this time. I can type with left hand, hunt and peck with right hand fisted and only using index finger. Thsi works briefly then I have to fist left hand too.
Live and learn, change bag on morning of cause hands don't work to do it on day after. I changed bag but a lot more challenging. Hope no leaks.

This is crazy.
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

NHMike
Posts: 1537
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Apr 13, 2018 3:23 pm

Caat55 wrote:I got oxi symptoms bad and more quickly this time. I can type with left hand, hunt and peck with right hand fisted and only using index finger. Thsi works briefly then I have to fist left hand too.
Live and learn, change bag on morning of cause hands don't work to do it on day after. I changed bag but a lot more challenging. Hope no leaks.

This is crazy.
Susan


Yup. I changed the bag before my infusion Wednesday. Second time is a real shocker.

I've had trouble typing today but a good keyboard helps. My wife has noticed my typos today.

I'm changing bags every 7 days so hopefully some decent fade by then.

Best of luck - this stuff stinks.
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 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
MSS, KRAS G12D
10/17: 2.7 x 2.2 x 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 cycles 12/17-6/18

Caat55
Posts: 475
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Fri Apr 13, 2018 3:28 pm

After I got the sticker shock on the supplies and now that I am better with it, once a week works great.

I am using my assistive technology skills more for myself now than I ever expected. My husband is picking up the slight around house.
I think I am going to add something to my signature in emails and texts apologizing for miss spelled words and just get over it. Takes twice, maybe three times as long to get anything done. Today was going to be a write at home day, scratch.

S
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

NHMike
Posts: 1537
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Apr 13, 2018 9:54 pm

Caat55 wrote:After I got the sticker shock on the supplies and now that I am better with it, once a week works great.

I am using my assistive technology skills more for myself now than I ever expected. My husband is picking up the slight around house.
I think I am going to add something to my signature in emails and texts apologizing for miss spelled words and just get over it. Takes twice, maybe three times as long to get anything done. Today was going to be a write at home day, scratch.

S


My supplies are covered by insurance except for some things that I buy that insurance doesn't cover because it makes my life a lot easier even if I have to pay out of pocket. The main item is Cavilon Spray which is $10 for a very small bottle. It's so much easier to use than the wipes, at least for me. But my pouch/wafers are something like $300 for 20 pouch/wafers and those are covered. I've chatted with McKesson and Medicare covers 10 wafers/pouches per month which means two/week. I am doing one per week now but that's only because the Cavilon Spray and Powder work so well for me - before I learned about them, I needed to change them more often.

I don't know what your insurance coverage is but you might ask if you already haven't done so.
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 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
MSS, KRAS G12D
10/17: 2.7 x 2.2 x 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 cycles 12/17-6/18

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Shana
Posts: 397
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

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

Postby Shana » Fri Apr 13, 2018 10:55 pm

NHMike wrote:
Caat55 wrote:After I got the sticker shock on the supplies and now that I am better with it, once a week works great.

I am using my assistive technology skills more for myself now than I ever expected. My husband is picking up the slight around house.
I think I am going to add something to my signature in emails and texts apologizing for miss spelled words and just get over it. Takes twice, maybe three times as long to get anything done. Today was going to be a write at home day, scratch.

S


My supplies are covered by insurance except for some things that I buy that insurance doesn't cover because it makes my life a lot easier even if I have to pay out of pocket. The main item is Cavilon Spray which is $10 for a very small bottle. It's so much easier to use than the wipes, at least for me. But my pouch/wafers are something like $300 for 20 pouch/wafers and those are covered. I've chatted with McKesson and Medicare covers 10 wafers/pouches per month which means two/week. I am doing one per week now but that's only because the Cavilon Spray and Powder work so well for me - before I learned about them, I needed to change them more often.

I don't know what your insurance coverage is but you might ask if you already haven't done so.



I was able to get my insurance to double my supplies after having the doctor's office contact them citing "Chemo induced diarrhea" as the need for more supplies and they approved it. My understanding was that the insurance views the quantity as a general usage for ostomy patients, many who are not cancer patients. It's worth asking, my insurance is covering all of the additional supplies without a copay.
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
CEA 12/17 - 38.7! 1/18 - 33! 2/18-36.5 3/18-39.8 4/18- 54 (ugh) 5/11/18 -78 :( 5/25/18-63!!!!
CT-Scan 5/18 -mixed -some progression and some shrinkage, possibly pseudo
Irinotecan increased to 200mg on 5/7/18 in response to increased CEA and it's working as of 5/25!

NHMike
Posts: 1537
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sat Apr 14, 2018 2:53 pm

I bought Nitrile gloves in 5 mil and 8 mil a while ago to deal with cracked skin problems with dry, winter weather and I find that they help when I have cold sensitivity in my fingers. The advantage of Nitrile gloves are that you can use touch devices with them. The thicker gloves are stronger but they give you less tactile feedback. I order them 100 at a time for Amazon and find that other family members use them for various reasons. They are good to have around - especially if you have issues with water on your hands (as in doing dishes).
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 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
MSS, KRAS G12D
10/17: 2.7 x 2.2 x 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 cycles 12/17-6/18

mobrouser
Posts: 44
Joined: Wed Apr 11, 2018 1:44 pm
Location: Ontario

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

Postby mobrouser » Sat Apr 14, 2018 4:16 pm

Before going to bed apply a good amount of moisturising lotion to your hands, then put on gloves and wear to bed for the night. This helps to heal the splits in the skin.
Learned this at work long before my diagnosis.
I use vinyl gloves, cheaper and easily available at drugstore or hardware store. I wear them over woollen gloves when dealing with cold water - vegetable washing for example.

8) mob
CC Dx Oct 2017 @ age 58
Laparoscopic hemi-colectomy Dec 2017
Adenocarcinoma ascending colon – 6cm x 6cm x 2cm, Low Grade, penetrates to peritoneum
T4a N2a M0, Stage IIIC
lymph nodes 6 positive out of 18
FOLFOX started Jan 16 2018; finished Aug 2 2018 (felt like a year)
CT scan Aug 8 2018 - Clear
CEA - 01/15/18 - 2.8 07/29/18 - 5.3

jens22
Posts: 997
Joined: Wed Jun 09, 2010 9:26 am
Facebook Username: jspirio
Location: Long Island, NY

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

Postby jens22 » Sat Apr 14, 2018 4:48 pm

I know it's a lot to digest and you just want to get going. I have a friend in the same boat and apparently xeloda does take a week or more to come in via mail order. My friend just went through the same thing. Once it comes in you willbe ready to roll....then Radiation will be set up. If you have a max out of pocket....Don't worry you will meet it this year. Blood is definelty scary and with all of this..even when you think you are controlling your treatment ...a curve ball will come. Take it one step at a time.
Colonoscopy 3/10 for ? hemmorrhoid.
Diag Colon Cancer 3 days later
Colon Ressection 3/30/10
Stage 3B 5/14 Nodes positive.
Power Port and 7 months of Chemo
Port removed 11/11
8 negative Cat Scans..... 7 years cancer free and Discharged from Sloane Kett!!
Diag age 47 , now 54 Mom of 3 boys.

MissMolly
Posts: 533
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

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

Postby MissMolly » Sat Apr 14, 2018 5:58 pm

I was able to get my insurance to double my supplies after having the doctor's office contact them citing "Chemo induced diarrhea" as the need for more . . . It's worth asking, my insurance is covering all of the additional supplies without a copay.[/quote]

Shana brings up a valuable point. Insurance providers will provide additional ostomy supplies (wafers, pouches, barrier rings, protective skin wipes/spray) for the same co-pay beyond the prescribed allowable when there is a specific need. The physician needs to submit what is called a “use over-ride” and simply describe the type of ostomy supplies needed and the amount/number for a 30 day supply.

Medicare sets the prescribed monthly allotment that is followed by private and group insurance plans.

For drainable ileostomy poiches, the 30 day allowable is 20 pouches (one piece or two piece styles) and 10 wafers (two piece style). For disposable closed ended colostomy pouches, the 30 day allowable is 60 pouches. For barrier rings (Ekin Cohesive Seals, Hollister Adapt Rings) the monthly allowable is one box of 10. Cavilon Liquid Skin Protectant is covered as a wipe but often not as a spray.

For anyone needing to use additional ostomy supplies, before paying out of pocket ask your physician to submit a request for a use over-rider. The initial few weeks with a new ileostomy can mean lots of unexpected wafer and pouch changes as you learn the products and skin application process that will work best for you. Most people will need additional supplies beyond the minimal monthly allotment.
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

Aqx99
Posts: 402
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 Apr 15, 2018 6:32 am

NHMike wrote:I bought Nitrile gloves in 5 mil and 8 mil a while ago to deal with cracked skin problems with dry, winter weather and I find that they help when I have cold sensitivity in my fingers. The advantage of Nitrile gloves are that you can use touch devices with them. The thicker gloves are stronger but they give you less tactile feedback. I order them 100 at a time for Amazon and find that other family members use them for various reasons. They are good to have around - especially if you have issues with water on your hands (as in doing dishes).


I buy my nitrile gloves at Harbor Freight Tools. With the coupons I get every month from them, I pay a fraction of the cost of the ones that are in the pharmacy. Last time I bought 5 boxes of 100 at $3.99 per box.
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

Aqx99
Posts: 402
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 Apr 15, 2018 6:34 am

mobrouser wrote:Before going to bed apply a good amount of moisturising lotion to your hands, then put on gloves and wear to bed for the night. This helps to heal the splits in the skin.
Learned this at work long before my diagnosis.
I use vinyl gloves, cheaper and easily available at drugstore or hardware store. I wear them over woollen gloves when dealing with cold water - vegetable washing for example.

8) mob


I did the same thing at night. I bought a pair of cotton gloves at Party City for $2.99. My oncologist prescribed me Eucerin for the hand-foot syndrome.
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


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