Chemotherapy Journey

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Shana
Posts: 301
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Chemotherapy Journey

Postby Shana » Mon Jan 08, 2018 11:25 am

Good luck with your journey Riki.

Best laugh I've had so far about blowing a gasket. I have a colostomy and woke up with an inflated bag that looked like it was going to take off at any moment!

Keep that sense of humor :)
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
CT-Scan 9/17, 12/17, 3/18 Shrinkage of liver mets continues, no blockage
Irinotecan increased from 100 to 150 mg with tolerable side effects
Reoval & resection still on hold. Have to be stable enough to be OFF chemo one month prior and after surgery.

skb
Posts: 30
Joined: Tue Mar 28, 2017 2:00 pm

Re: Chemotherapy Journey

Postby skb » Mon Jan 08, 2018 4:01 pm

Rikimaroo,
My WBC and ANC counts were plummeting when oxaliplatin was part of the regimen. So I had Neulasta shorts for few months. They were not terrible but my bones ached two to three days after its administration.

Regarding pooping pellets: The first few days after every chemo dose, I had constipation and difficulty in passing motion. I was advised to take a plant based pill called Senna which is available over the counter. That helped.

Thanks,
skb
3/21/17: Dx T3N0M0- distal rectal cancer, 4.5cm tumor, 2.5 cm from anal verge
4/18 to 5/22/17: chemoradiation - Xeloda 1800mg twice a day for 25 days, 200 Cgy per day
6/28/17: biopsy from where tumor used to be reveals no invasive adenocarcinoma
8/09/17: MRI reveals no primary tumor left
8/11/17: placed in wait and watch at Univ of Minn.
8/17/17 to 12/1/17: mop-up chemo with Folfox and oxaliplatin (IV infusion), every two weeks
1/28/18 colonoscopy says no tumor
4/4/18 MRI reveals no tumor still

Rikimaroo
Posts: 101
Joined: Tue Dec 20, 2016 8:48 pm

Re: Chemotherapy Journey

Postby Rikimaroo » Mon Jan 08, 2018 4:38 pm

My Mom use to give me Senna Pod when I was younger and mad did I healthier lol.

Who knows why this happened but senna was a pain in the butt but the cleanse of your bowels helped a lot.

Thanks guys for the advice information. I really hope I beat this for my babies, Daddy needs to be around :!:
Diagnosed at 38 y/o male, 3 kids 7,9,14 - Now 39.
RC T3N1M0
Chemo Rad, CCR - W&W 5/2017
Local Recurrence, discuss options 11/26/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/15/2017, folfox/oxapalatin + avastin starts on the 12/20/2017
Blood Clot in Neck 1/16/2018, stop avastin, continue FolFox
Surgery Liver and Rectal Resection TME 4/3/2018

Rikimaroo
Posts: 101
Joined: Tue Dec 20, 2016 8:48 pm

Re: Chemotherapy Journey

Postby Rikimaroo » Sun Jan 14, 2018 5:13 pm

Still trucking on. Anyone else have any issues where there nose got a blister inside? My right nostril has what looks like a blister opening, it hurts if I mess with the area, but other then that I am doing ok. Fatigue really sucks. Going 3rd treatment on Tuesday :(

I so want to get this over with.
Diagnosed at 38 y/o male, 3 kids 7,9,14 - Now 39.
RC T3N1M0
Chemo Rad, CCR - W&W 5/2017
Local Recurrence, discuss options 11/26/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/15/2017, folfox/oxapalatin + avastin starts on the 12/20/2017
Blood Clot in Neck 1/16/2018, stop avastin, continue FolFox
Surgery Liver and Rectal Resection TME 4/3/2018

Lee
Posts: 5507
Joined: Sun Apr 16, 2006 4:09 pm

Re: Chemotherapy Journey

Postby Lee » Sun Jan 14, 2018 5:29 pm

I don't have any real advice, just want to wish you good luck. As others have said, drink lots of water day or two prior to infusion.

May want to keep a journal of how certain foods effect you. I truly believe radiation changes our plumbing system. I'm almost 14 yrs out, and salads gives me the runs faster than anything else.

Again, good luck,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

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Robino1
Posts: 417
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Chemotherapy Journey

Postby Robino1 » Sun Jan 14, 2018 5:43 pm

Rikimaroo wrote:Still trucking on. Anyone else have any issues where there nose got a blister inside? My right nostril has what looks like a blister opening, it hurts if I mess with the area, but other then that I am doing ok. Fatigue really sucks. Going 3rd treatment on Tuesday :(

I so want to get this over with.


I didn't get a blister but I did get like a scab and it was a bit painful when blowing my nose. I also get slight bloody noses. Only once was it concerning as it wouldn't stop right away.
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.
12/8/17 Markedly decr ant peritoneal nodularity since 8/29/17 compat w/ marked posi respns to therapy
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
BRAF V600e

Rikimaroo
Posts: 101
Joined: Tue Dec 20, 2016 8:48 pm

Re: Chemotherapy Journey

Postby Rikimaroo » Sun Jan 14, 2018 7:57 pm

Yes it’s like a scab. Ok so then the same. I didn’t know if to call it blister or scab lol...

Thank you Lee
Diagnosed at 38 y/o male, 3 kids 7,9,14 - Now 39.
RC T3N1M0
Chemo Rad, CCR - W&W 5/2017
Local Recurrence, discuss options 11/26/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/15/2017, folfox/oxapalatin + avastin starts on the 12/20/2017
Blood Clot in Neck 1/16/2018, stop avastin, continue FolFox
Surgery Liver and Rectal Resection TME 4/3/2018

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Robino1
Posts: 417
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Chemotherapy Journey

Postby Robino1 » Sun Jan 14, 2018 8:39 pm

It did end up going away after a few months. I think the nose just needs to learn a "new normal" :lol:

Try not to pick at it. :oops:
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.
12/8/17 Markedly decr ant peritoneal nodularity since 8/29/17 compat w/ marked posi respns to therapy
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
BRAF V600e

Rikimaroo
Posts: 101
Joined: Tue Dec 20, 2016 8:48 pm

Re: Chemotherapy Journey

Postby Rikimaroo » Tue Jan 16, 2018 7:56 pm

You know I didn't mention this but I also have a neck pain on the right side of my neck bottom of my jaw. It's a weird pain so today I go in for my infusion, and mention it to them. This has been going on for a week, my last treat was on the 3rd, and it showed up maybe the next week around the 9th? It is a weird pain, so they did an ultrasound and found a blood clot in my neck :shock:

I thought it was the nuelasta and mentioned to the doctor last week, but I am the dumbest guy ever I always tell the doctor what I think it is instead of just telling him my issue and let him tell me what it is. He didn't scold me, but told me Riki, you can't try to self diagnose yourself and then tell me what you think it is, because I might just agree and ignore the real issue. For example for this neck pain I said does Nuelasta cause neck pain and he said it can. That was it LOL...I am such a mook!!

They quickly prescribe Xarelto which I just took one tonight. This is really scary!!!

Anyone else experience blood clots while on Avastin? I am getting infusion tomorrow but no Avastin. Blood Thinners for 21 days and more, until I am done with treatment I am assuming.

The journey continues
Diagnosed at 38 y/o male, 3 kids 7,9,14 - Now 39.
RC T3N1M0
Chemo Rad, CCR - W&W 5/2017
Local Recurrence, discuss options 11/26/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/15/2017, folfox/oxapalatin + avastin starts on the 12/20/2017
Blood Clot in Neck 1/16/2018, stop avastin, continue FolFox
Surgery Liver and Rectal Resection TME 4/3/2018

User avatar
Shana
Posts: 301
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Chemotherapy Journey

Postby Shana » Tue Jan 16, 2018 9:35 pm

Rikimaroo wrote:You know I didn't mention this but I also have a neck pain on the right side of my neck bottom of my jaw. It's a weird pain so today I go in for my infusion, and mention it to them. This has been going on for a week, my last treat was on the 3rd, and it showed up maybe the next week around the 9th? It is a weird pain, so they did an ultrasound and found a blood clot in my neck :shock:

I thought it was the nuelasta and mentioned to the doctor last week, but I am the dumbest guy ever I always tell the doctor what I think it is instead of just telling him my issue and let him tell me what it is. He didn't scold me, but told me Riki, you can't try to self diagnose yourself and then tell me what you think it is, because I might just agree and ignore the real issue. For example for this neck pain I said does Nuelasta cause neck pain and he said it can. That was it LOL...I am such a mook!!

They quickly prescribe Xarelto which I just took one tonight. This is really scary!!!

Anyone else experience blood clots while on Avastin? I am getting infusion tomorrow but no Avastin. Blood Thinners for 21 days and more, until I am done with treatment I am assuming.



The journey continues


Wow that is very scary! I'm glad you mentioned it and they did the ultrasound, never would have thought about blood clots either.

I have an ache in my neck that comes and goes and is centered around the area where my port catheter is placed. I mentioned it to the nurses and they said it was a common complaint but that my port was working fine. I think I will ask the doctor about it next week just in case after what you just found out. Always better to be safe these days when dealing with the mysteries of chemo side effects! Thanks for sharing your experience and I sure hope you feel better soon :)
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
CT-Scan 9/17, 12/17, 3/18 Shrinkage of liver mets continues, no blockage
Irinotecan increased from 100 to 150 mg with tolerable side effects
Reoval & resection still on hold. Have to be stable enough to be OFF chemo one month prior and after surgery.

Rikimaroo
Posts: 101
Joined: Tue Dec 20, 2016 8:48 pm

Re: Chemotherapy Journey

Postby Rikimaroo » Tue Jan 16, 2018 10:02 pm

Hi Shana,

Mine has been consistent pain and has not relieved itself. So I figured I say something. Avastin can cause blood clots. I am very nervous and hope these blood thinners gives my body time to heal me of the clot.

It’s a very scary situation because of what you read about clots.
Diagnosed at 38 y/o male, 3 kids 7,9,14 - Now 39.
RC T3N1M0
Chemo Rad, CCR - W&W 5/2017
Local Recurrence, discuss options 11/26/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/15/2017, folfox/oxapalatin + avastin starts on the 12/20/2017
Blood Clot in Neck 1/16/2018, stop avastin, continue FolFox
Surgery Liver and Rectal Resection TME 4/3/2018

Tdubz
Posts: 113
Joined: Sun May 07, 2017 11:01 am

Re: Chemotherapy Journey

Postby Tdubz » Tue Jan 16, 2018 10:22 pm

I’m glad you told your doctor. Blood clots are scary. Just goes to show how important it is to tell your doc all the side effects.

I never had a scab or blister in my nose but I did get bloody noses after almost every treatment.

3 treatments down, you are already half way done! Keep up the fight

User avatar
Robino1
Posts: 417
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Chemotherapy Journey

Postby Robino1 » Tue Jan 16, 2018 10:27 pm

I didn't know Avastin can cause blood clots :shock: I've had 12 treatments and still having more with it. Another thing to watch out for.
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.
12/8/17 Markedly decr ant peritoneal nodularity since 8/29/17 compat w/ marked posi respns to therapy
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
BRAF V600e

Rikimaroo
Posts: 101
Joined: Tue Dec 20, 2016 8:48 pm

Re: Chemotherapy Journey

Postby Rikimaroo » Sun Jan 21, 2018 9:45 am

NHmike how is it going. I am so ready to just give up but I won’t. Oxaliplatin is brutal. I get shocks on the first and 2nd day of getting in, shocks in my butthole and stomach area. Cold sensitive is the worse. Constipasion right after treatment. Ugh I hate this but it’s working. Cea down from 428 to 163.5.

I am having a hard time handling this
Diagnosed at 38 y/o male, 3 kids 7,9,14 - Now 39.
RC T3N1M0
Chemo Rad, CCR - W&W 5/2017
Local Recurrence, discuss options 11/26/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/15/2017, folfox/oxapalatin + avastin starts on the 12/20/2017
Blood Clot in Neck 1/16/2018, stop avastin, continue FolFox
Surgery Liver and Rectal Resection TME 4/3/2018

NHMike
Posts: 1107
Joined: Fri Jul 21, 2017 3:43 am

Re: Chemotherapy Journey

Postby NHMike » Sun Jan 21, 2018 11:28 am

Rikimaroo wrote:NHmike how is it going. I am so ready to just give up but I won’t. Oxaliplatin is brutal. I get shocks on the first and 2nd day of getting in, shocks in my butthole and stomach area. Cold sensitive is the worse. Constipasion right after treatment. Ugh I hate this but it’s working. Cea down from 428 to 163.5.

I am having a hard time handling this


Today is the 11th day out and I'm starting to feel normal again. The cold sensitivity is dropping and most of the other stuff (a long list of symptoms are declining). My fingertips are cracked from the dry air and washing my hands a lot after emptying the bag. BTW, I made the mistake of getting the beige pouches instead of the transparent ones. I had a little leakage this morning from the drain area. The material feels different in the the transparent bag is a bit stiffer in the closure. Also, not being able to see how much is still in the bag is a problem. It happened after three days. The leakage doesn't go anywhere and is easy to clean up but I'll order the transparent in the future.

My daily steps were about 3,500 for the past week. Today I did 3,000 just this morning and hope to get back to normal at 10,000.

Yes, Oxaliplatin is brutal but it looks like it is working for you. I think that things would be a lot easier in the summer. Our weather has moderated as well and we have about a week with temperatures during the day above freezing and that helps a lot. Also, not much snow in the forecast and that helps a lot as well.

I bought Nitrile Gloves which I'm wearing right now. A co-worker showed up with them several weeks ago and I asked why he was wearing them and he said to deal with cracked skin. The Nitrile Gloves retain moisture that helps cracked skin to heal. Additionally, you can use touchpads and touchscreens so I don't have to take them off when using computers and phones. And I'll get less water on my fingertips.

I have the opposite - basically very watery output in the bag after the treatment and this lasts for about a week. I haven't had the shocks in other areas though I have some leakage of other fluids. It was dark brown last week after I had a bowl of beef broth and I think that it was the beef broth going down the other side of the stoma. This seems more likely when I am sitting a lot. So it's been brutal for ten days and I'm on the mend. I'm going to demand a reduction in the Oxaliplatin for the next cycle. I have also considered stopping the infusions for a while to recover.

Compounding my problems is a big project that I promised that I'd get done by the middle of February. I've been making great progress on it but I'm in heads-down work mode like that and don't get in my walking, drinking of water or other fluids and I don't get enough sleep. I track everything (food, water, sleep, steps, exercise) and I can see when I'm not keeping up with the health stuff. I also haven't done weights in the past week.

Chemo is awful.

I'm in a different place than you as I shouldn't have any cancer. If your CEA is that high, then you likely need the chemo a lot more than I do but you could ask your oncologist for a reduction.
6/23/17: ER rectal bleeding; Colonoscopy
7/13: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4
MSS, KRAS G12D
10/6: 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
10/30: LAR, Temp Ileostomy, Path Complete Response
12/20: Started CapeOx


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