New member here, hi! My CRC stage 2/3 story

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cancerchola
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Joined: Fri Mar 16, 2018 4:54 am
Location: San Francisco Bay Area

New member here, hi! My CRC stage 2/3 story

Postby cancerchola » Thu May 10, 2018 1:43 am

I’ve been a member for a while but this is my first post. This forum has been so helpful in answering my questions and finding relief, especially when I read about people going through the same experiences. I wanted to also share my experience so far in my treatment and hopefully answer any questions that people might have.

To start, I’m 35 years old. I have no history of cancer in my family. I would consider myself to have lead a mostly healthy life.

I was diagnosed in September with stage 2/3 rectal cancer. They found it after I was referred to get a colonoscopy. What brought me to the doctor was that I noticed I was consistently getting blood in my stool for about 3 months prior. A 2x3 cm sized tumor was found about 10 cm up my rectum, right at the bend of the sigmoid colon.

The treatment plan they devised was to take Xeloda pills and do radiation, Mon-Fri for 6 weeks. Afterwards
Id get surgery to remove the tumor and get a temp ileostomy bag, then 4.5 months or 9 infusions/2weeks of FOLFOX, followed by surgery to reverse the ileostomy.

Before starting the treatment, I thought about freezing my eggs but apparently it takes at least a month to prepare you for it. They shoot your abdomen up multiple times with all these fertility hormones and then you pay like 10,000 to store and freeze them. That’s not including the annual storage fee and then the eventual cost of doing IVF. Oh and did I mention that most eggs aren’t even viable when they are unfrozen? So anyway, I passed on the egg freezing. Some insurance covers it but mine didn’t and it didn’t seem worth it. Also who wants to delay getting treatment?! It’s so scary to have a ticking time bomb inside of you. It’s kind of sad but I’m open to options like adoption and I’d much rather get treatment than to risk a worse condition.

After deciding I wasn’t going to freeze my eggs, I started the treatment. I did radiation at 7:30am before work for the first 4 weeks and then started to feel weak so I stopped working. Radiation only took about 5 minutes but sometimes holding your body in an awkward position for that long can feel like a lifetime. I would sing to myself or recite things I had memorized to get my mind off of what was going on. Sometimes the therapists would play music of my choice but it was mostly their choice!
At 4 weeks I got a radiation sore right below my coccyx. It just appeared overnight as this red spot with no skin on it and it was kind of itchy but hurt when you touched it. Luckily it was kind of protected inside my crack so I had no problem with sitting. I did a sitz bath daily and I applied a Chinese medicine herbal burn cream by Blue Poppy. You can also use Eucerine radiation gel or calendula cream. I think the point is to keep it moist. The burn cream worked well to protect the raw skin and keep the redness down but the open sore didn’t go away until I finished the radiation.

Around week 5 I started to experience excruciating gas spasms and pain around my belly button. I couldn’t figure out what triggered it. It would come and go in cycles and sometimes be very intense. I took a lot of gas x and it kind of helped. Tea feels good too. Definitely the worst part of Xeloda for me.

I lost my appetite and my taste was affected. I went from being a salt eater to having an insane sweet tooth. Sugary cereal with almond milk, bananas, apple sauce, tofu, potatoes, rice and toast have been my go to’s for getting sustenance. Whatever I was craving, I just gave in because I needed calories no matter what.

I went into menopause about 3 weeks into radiation. So many hot flashes!!! So annoying to deal with on top of everything else. I had one period during the radiation that was very thin and watery. Not typical for me. After that my period never came back. Love it! Hot flashes have now (even while I’m chemo) seemed to settle down about 6 months later. Radiation also makes your vagina shrink. I had sex during my treatment and I had some bleeding every time. Later in my treatment intercourse was uncomfortable due to the inflammation in that area. They suggested vagina dilation therapy about a month after surgery. I definitely feel the change in size, elasticity and lubrication.

After chemo(xeloda pills) and radiation, I waited about 6 weeks to have surgery. They removed the tumor, resected my colon and gave me a temporary ileostomy.

Surgery was tough. It was my first time ever going under so I was scared. I had my surgery at Stanford and everything went more or less to plan. One thing I have to say is that you need to start out slow and soft with food for that time you’re in the hospital because I ended up getting a food block and vomiting all this gross stuff all over myself. It was a terrible night to say the least.

After I recovered from the surgery I started Folfox infusions in February. I have completed 5 rounds out of 9 so far and I still have one more surgery to go after this to reverse the ileostomy. Almost there!

Folfox infusions feel vastly different than taking the xeloda pills in that the side effects are a bit more intense and energetically you’re like an accordion going from tired cold tense and shaky to less tired less cold and less uneasy. At this point I’ve learned that I can’t drink cold things for 1 week after chemo. Heating pads and electric blankets have saved me from feeling cold. In the sink I keep a bowl of hot water so that when my hands cramp up from dealing with cold stuff from the fridge I can just dunk them and it’s instant relief.

Falling asleep is not easy but lorazepam really helps. My gums have been inflamed since starting chemo. On the third round my Gums were inflamed, itchy and red. I used yin care oral mouth wash and got a softer tooth brush. Since my platelets are so low sometimes they just bleed randomly or I’ll wake up with brown stains on my teeth from bleeding.

Around the 4th treatment I staretd to shed hair quite a bit. It was jarring to see so much hair in my brush and in the shower drain. The thinning slowed down and I would say it’s thinned out about 30%. It’s mostly noticeable on my part. Bangs helped reduce the part and I got some hair color spray to put in the bald spot which really helps mask the skin poking through your hair!

I’m still sheddding a little bit so we’ll see where it goes. I’ve had 2 chemo appointments delayed 1 week because of low blood counts. They now give me a neutrogen shot the day after I’m done with the chemo fanny pack.

Since the 3rd infusion I have been incredibly tired. I don’t know how people work through this!!! I get winded going up the stairs or walking to my car. I like to go on drives because I’m sitting and i can feel the warmth of the sun or blast the heater on myself.

Something I have been testing out is drinking bone broth during my chemo days. The last two times it seems to have helped with the initial sensation of cramping and cold sensitivity.

Lately I’ve been getting some really bad gas cramps/intestinal spasms. I’m pretty sure it’s the chemo because it doesn’t seem to be triggered by any particular one food. I usually get relief from burping so I’m pretty sure it’s gas. I have chewable gas x which sort of helps but mostly you just have to wait it out. I find doing child’s pose or bringing my knees to my chest helps move the gas around.

Ok well that pretty much brings us up to date! I have chemo #6 next week (hopefully if it doesn’t get delayed) and so far I’m just resting and listening to my body.

Happy to answer any questions about my experience so far. Thanks for reading!
Last edited by cancerchola on Sat May 12, 2018 12:27 am, edited 1 time in total.
35 year-old female
Sept 2017: Dx rectal cancer at T2N1
no genetic mutations
Oct-Nov 2017: 28 days of xeloda pills/radiation
January 2018: laparoscopic LAR surgery with loop ileostomy
Feb-June 2018: 12 rounds of FOLFOX

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CRguy
Posts: 9592
Joined: Sun Feb 10, 2008 6:00 pm

Re: New member here, hi!

Postby CRguy » Thu May 10, 2018 12:15 pm

Welcome to the forum and thanks for the informative précis of your Journey so far.
I am sure others will join in to chat with you as well

Best wishes moving forward
Cheers
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
11 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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Robino1
Posts: 462
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: New member here, hi!

Postby Robino1 » Thu May 10, 2018 1:27 pm

Very nice detail of your journey thus far.

I think most of find a way to deal with the side effects. It ALWAYS helps to get more tips ;)

Welcome to the club we didn't want to really join. :)
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

NHMike
Posts: 1697
Joined: Fri Jul 21, 2017 3:43 am

Re: New member here, hi!

Postby NHMike » Thu May 10, 2018 1:36 pm

You've had a very rough time of it all as most of us do but you're not too far away from the endpoint. I know that it's rough to get there but we all take it a step at a time.
Thanks for telling your story and I hope you can get through the rest of the treatment reasonably well.
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

L.andr
Posts: 9
Joined: Thu Apr 19, 2018 12:59 am
Facebook Username: Lynn.Andrews

Re: New member here, hi! My CRC stage 2/3 story

Postby L.andr » Mon May 14, 2018 5:43 pm

hello cancerchola:

Thanks for your experience. I'm supposed to start Xeloda this week. found out my UHC advantage plan will not cover it. Expensive, I know it may mean the difference between life and death so I will do it.

I am glad to learn how you dealt with the gas. I will watch for that.

I will pray for you. I cry when I go on this site. I am fortunate to have a lower stage. But I do palliative care for a living, and I am not used to being on this side of health care. I am not working now. I am trying to take care of myself.
I admire your strength.
L.andr (Lynn)
(I filled out a signature with my info but it is not working).
Stage 2A colon CA diagnosed April 18, 2018. no lymph nodes involved.
Lap Sigmoidectomy April 26, 2018, 2.8 cm tumor removed, anastomosis doing well so far.
CEA 3.3.
Age 65 female
Dx 4/18/18 at colonoscopy
Sigmoid colon tumor 2.8cm.
Lap colectomy 4/26/18.
Stage 2a adenocarcinoma.
CEA 3.3

margiej
Posts: 38
Joined: Sat Apr 14, 2018 8:46 am

Re: New member here, hi! My CRC stage 2/3 story

Postby margiej » Mon May 14, 2018 6:08 pm

L.andr wrote:hello cancerchola:

Thanks for your experience. I'm supposed to start Xeloda this week. found out my UHC advantage plan will not cover it. Expensive, I know it may mean the difference between life and death so I will do it.

I am glad to learn how you dealt with the gas. I will watch for that.

I will pray for you. I cry when I go on this site. I am fortunate to have a lower stage. But I do palliative care for a living, and I am not used to being on this side of health care. I am not working now. I am trying to take care of myself.
I admire your strength.
L.andr (Lynn)
(I filled out a signature with my info but it is not working).
Stage 2A colon CA diagnosed April 18, 2018. no lymph nodes involved.
Lap Sigmoidectomy April 26, 2018, 2.8 cm tumor removed, anastomosis doing well so far.
CEA 3.3.


Lynn, I am so sorry your insurance isn't covering Xeloda. There is a generic...capecitabine.. Is that not covered either? Can you appeal? I ended up disposing of so many pills.. Pharmacy kept sending them even when doctor cut dose. Such a waste.
Margie
Dx CC 12/2015, age 57 at Dx
Stage IIIb: T3N1b
Adenocarcinoma, sigmoid colon, 2.5 cm - low grade, moderately differentiated
3/6 positive lymph nodes
laparoscopic colectomy 1/20/2016
Capox started 3/4/16 - Six rounds
CT-suspicious lymph 2/22/16
PET scan 2/24/16 clear
CT 6/8/16 clear
CT 10/3/17 clear
CEA 12/17 1.7
5/16 3.8
7/16 1.9
3/17 1.3
10/17 1.2
4/18 1.6
NED

Caat55
Posts: 515
Joined: Sat Dec 23, 2017 6:01 pm

Re: New member here, hi! My CRC stage 2/3 story

Postby Caat55 » Mon May 14, 2018 7:54 pm

Sounds like we were diagnosed about the same time. I am considerably older than you so menopause was probably around the corner but non the less awful to go through with all the rest. Do you think it has gotten worse since starting mop op? I am hot and cold within seconds I swear.
I have done three rounds, two more to go. I am working full timemused to be a night owl and find I can barely make it to 9 some nights.

We are fortunate to live here in California were the winter weather is mild.

It was good to read your journey, experiences. Helps to know the experiences are similar on this awful path.

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

margiej
Posts: 38
Joined: Sat Apr 14, 2018 8:46 am

Re: New member here, hi! My CRC stage 2/3 story

Postby margiej » Mon May 14, 2018 8:03 pm

Cancerchola - thank you for sharing your story.. You have had quite a journey. You and everyone else on this forum are so inspiring to me and give me strength. Keep hanging tough!
Hugs, Margie
Dx CC 12/2015, age 57 at Dx
Stage IIIb: T3N1b
Adenocarcinoma, sigmoid colon, 2.5 cm - low grade, moderately differentiated
3/6 positive lymph nodes
laparoscopic colectomy 1/20/2016
Capox started 3/4/16 - Six rounds
CT-suspicious lymph 2/22/16
PET scan 2/24/16 clear
CT 6/8/16 clear
CT 10/3/17 clear
CEA 12/17 1.7
5/16 3.8
7/16 1.9
3/17 1.3
10/17 1.2
4/18 1.6
NED

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O Stoma Mia
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Re: O/T Signature not displaying

Postby O Stoma Mia » Mon May 14, 2018 11:33 pm

L.andr wrote:... (I filled out a signature with my info but it is not working).
Stage 2A colon CA diagnosed April 18, 2018. no lymph nodes involved.
Lap Sigmoidectomy April 26, 2018, 2.8 cm tumor removed, anastomosis doing well so far.
CEA 3.3.

If your signature is still not working, there are several things that you can do to try to solve the problem.

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CRguy
Posts: 9592
Joined: Sun Feb 10, 2008 6:00 pm

Re: New member here, hi! My CRC stage 2/3 story

Postby CRguy » Tue May 15, 2018 12:04 am

Thanks OSM for helping this member !
L.andr wrote:(I filled out a signature with my info but it is not working)

You did not have the box below your reply checked / selected :
Attach a signature (signatures can be altered via the UCP)

IF this box is not checked your signature will not appear in a post, even though you have a valid signature....
and YOU DO have a valid signature !
... and if you edit your signature in any way, you MUST select SUBMIT or the changes will not be accepted by the forum.

Cheers
CRguy

DarknessEmbraced
Posts: 3115
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: New member here, hi! My CRC stage 2/3 story

Postby DarknessEmbraced » Wed May 16, 2018 8:59 am

Welcome to the group and thank you for sharing your experiences!*hugs* 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


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