Colon cancer: my treatment and side effects

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Jannine
Posts: 55
Joined: Wed Jun 20, 2018 7:46 am

Colon cancer: my treatment and side effects

Postby Jannine » Wed Jul 25, 2018 9:12 am

I thought I'd start keeping a semi-regular thread on the stuff I'm dealing with, rather than starting new threads left and right. I've got questions!

Had FOLFOX treatment #2 this past Thursday, after a 6-day delay due to Neutropenia; that adds up to a month between treatments 1 and 2 (#2 was also delayed a week because of a family vacation). Disconnected Saturday and got the neulasta shot on Monday.

Similar side effects to the first treatment: cold sensitivity, stomach discomfort with lots of burping and general lack of appetite, weird flavor at the back of my throat that probably contributed to the lack of appetite, and first bite.

I did not feel much like eating for several days; would get food in front of me that I thought I wanted to eat, but just didn't feel like eating it. Yesterday (3 days after disconnect) I took a chance and stopped at a Five Guys, where I demolished a little cheeseburger and fries. That reassured me a bit. I was getting worried about losing more weight. Hopefully my appetite is back.

No noticeable taste changes and no nausea so far. I went to bed early and slept longer than usual Saturday and Sunday nights, but otherwise nothing I'd call fatigue.

But I do have some weird sensations: yesterday it seemed like I was periodically feeling cold in my port tube, at the point where the tubing goes into my neck. This morning it hurt a bit there, too. I do have some soreness at the port site from the infusion over the weekend (normal soreness, nothing that seems alarming) so maybe that's just referred pain? Is this anything others feel? My surgery to add the port was 6 or 7 weeks ago. It had mostly quit bothering me and I don't remember noticing it much after infusion #1. Thoughts?

On top of all that: we're in Maryland and are currently being hit by the rain train here. Had to tear up some of the carpet in the bedroom because it got wet. (Whoever thought it was a good idea to install carpet below grade?!? Ugh). Fortunately no fatigue today after helping my husband with that little home cleanup project. We didn't like the carpet to begin with, so this will just be an incentive to replace it sooner, right? At any rate, no major damage, whew.
Last edited by Jannine on Fri Aug 03, 2018 9:24 pm, edited 1 time in total.
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid colon resection (24 cm removed); no stoma.
1 noncontiguous tumor deposit found and removed; margins clear
7.5cm X 6cm X 2cm adenocarcinoma -- G2 (moderately differentiated)
T3 pN1c M0
31 lymph nodes tested, 0 positive.
5/2018 before surgery, CEA 11.2
6/2018 began 12 infusions adjuvant FOLFOX; CEA 3.7
7/2018: CEA 1.9; 2nd infusion delayed because of neutropenia; Neulasta after all future infusions
9/2018: CEA 2.8 at infusion #6

TMHRCH
Posts: 6
Joined: Thu Jul 19, 2018 8:24 am
Location: Schertz, TX

Re: Colon cancer: treatment and side effects

Postby TMHRCH » Wed Jul 25, 2018 11:57 am

But I do have some weird sensations: yesterday it seemed like I was periodically feeling cold in my port tube, at the point where the tubing goes into my neck. This morning it hurt a bit there, too. I do have some soreness at the port site from the infusion over the weekend (normal soreness, nothing that seems alarming) so maybe that's just referred pain? Is this anything others feel? My surgery to add the port was 6 or 7 weeks ago. It had mostly quit bothering me and I don't remember noticing it much after infusion #1. Thoughts?

My port bugged me horrendously (sore and red) after each treatment/access. It has not been accessed for the past 4 weeks and it is much less bothersome. If I guzzle something cold I do feel the cold sensation through my port and I have also had a burning feeling in my port when I swallowed a bite of much too hot (temp) food. My port sticks out of my skin so I think I have a mental visual problem with it.....I feel like a homing device is in me, lol. But it has been a life saver. I have very little and not easy to access veins. all blood draws are out of my hand and my veins are known for being very hard to access, always been this way, no reason why. With the amount of blood draws they have done, I can't imagine how hard it would have been (and painful) if they had to do them out of my hand, so I have thankful for the port as much as I am annoyed with it.

I finished my last chemo treatment FOLFOX about 5 weeks ago. Happily the nausea and bathroom issues have pretty much disappeared. I still cannot eat a lot of raw fruits and vegetables in a day without having potty issues. I have absolutely no appetite at all. I will be asking the DR on Friday if that will ever come back. I miss having something sounding good, tasting good and being satisfied with a meal. The nausea, bathroom issues and fatigue got worse after each treatment (and many delays due to neutropenia). During treatment (6 hours in treatment room and 46 hours after) I slept almost 13 hours a day by the end. I had never felt so tired in my life (someone who generally works 65 hours a week) and rarely stayed up past 6 p.m. The last 3 weeks I have stayed up til almost midnight and get about 8 hours of sleep. I do feel tired but tired of sleeping away the days. The fatigue has gotten 100% better since finishing. My neuropathy wasn't too bad, I stayed inside but also live in Texas and drank all items at room temperature. The drug (don't remember the spelling) that caused the neuropathy had to be taken out of my mix because of the platelets and neutrophils reactions and did not include in the last 3 treatments at all. I sometimes feel funny in my feet when I walk but not often and not sure it is related to neuropathy, it doesn't tingle just feels like it falls asleep mid stride.

Diagnosed at 47 F
Signet Ring Cell Metastatic Colon Cancer
T4aN2b1Mc
Sigmoid Colon Removed 10/17
Ileostomy Reversal 11/17
FOLFOX Dec 17-June18
Female Diagnosed @ 47
Signet Ring Cell Colon Cancer
T4aN2bM1c
Sigmoid Colon Removed 10/17
Ileostomy Reversal 11/17
Chemo 12/17-6/18 FOLFOX

Jannine
Posts: 55
Joined: Wed Jun 20, 2018 7:46 am

Re: Colon cancer: treatment and side effects

Postby Jannine » Fri Jul 27, 2018 9:50 am

8 days after infusion #2 and I'm still unable to hold things that are colder than fridge temps, or drink drinks that contain ice. The cold sensitivity is definitely lasting longer this time around.

Also in the past few days I've changed from always having soft (well formed, non-diarrhea) stools to having fairly hard-ish stools for the first time in months and months. Colace seems to be successfully preventing this from becoming constipation. I took Zofran right after the 2nd infusion but that was probably 5 days ago at least, so I can't imagine that's having a continuing effect on my gut. My bowel movements before cancer were really regular, so these kinds of changes probably concern me more than they really should.

I went along for a group fun run yesterday evening. I ended up just walking quickly rather than running, because my heart rate was getting up into the good aerobic zone just with that. Not normal for me, but I'm sure that's common with chemo.

TMHRCH, I have similar aesthetic problems with my own port. When it was first mentioned they told me I would hardly notice it. But I'm so thin that it is eye-catchingly ugly on me. I appreciate the ease and simplicity of the infusions thanks to the port, but man, I felt duped when I saw how awful it looked. The three bumps that the nurses are supposed to be able to "feel" are clearly visible from yards away. I'm also glad I have it, but I still absolutely loathe how it looks. I wish they had better prepared me for it. I felt like they did a much better job of warning me about everything else that has been unpleasant about this whole process.

I've gotten used to it, of course; it doesn't hurt any more and it's not permanent, which helps me mentally just set it aside rather than fretting over it. I can deal with it. I just don't like it.
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid colon resection (24 cm removed); no stoma.
1 noncontiguous tumor deposit found and removed; margins clear
7.5cm X 6cm X 2cm adenocarcinoma -- G2 (moderately differentiated)
T3 pN1c M0
31 lymph nodes tested, 0 positive.
5/2018 before surgery, CEA 11.2
6/2018 began 12 infusions adjuvant FOLFOX; CEA 3.7
7/2018: CEA 1.9; 2nd infusion delayed because of neutropenia; Neulasta after all future infusions
9/2018: CEA 2.8 at infusion #6

boxhill
Posts: 118
Joined: Fri Apr 06, 2018 11:40 am

Re: Colon cancer: treatment and side effects

Postby boxhill » Mon Jul 30, 2018 8:07 am

I'm on the permanent Neulasta crew also, due to neutropenia. :) Ironically, at my last infusion my WBC was high, and my temp was 99.1 (usually runs low), but they decided to go ahead anyway since there were no signs of any infection.

I've also had platelet problems: it seems as if my count goes down 30 or 40 points with each treatment unless I skip a week. The oncologist reduced my oxy dose by 20%, but the platelets still were down to 90 this time...they won't treat below 85. Since I want to get my infusions back to the beginning of the week from Thursday, I suggested that we move my next infusion to the following Tuesday to give my platelets more days to recover. I'm hoping to avoid having to come in, have blood work, and be told "sorry, not this week." That is the worst. I want to get this over with!

How are you doing on bone pain from Neulasta? I had a really nasty episode the first time, when I failed to take Claritin. Learned my lesson, and it has been fine since.

BTW, I have noted that the reduction in Oxy has decreased the cold sensitivity noticeably, although it is still there.
F, 64 at DX CRC Stage IV (or "3 1/2" per Dana Farber consult, LOL)
3/17/18 blockage, emergency surgery, r hemicolectomy
11 of 25 nodes
5 of 5 mesentery nodes, matted
0.5 cm sub-capsular liver met removed
pT3 pN2b pM1
Neg CEA, neg BRAF, KRAS G12D, germline mut ATM
dMMR, MSI-H, Neg for Lynch
5/4/18 FOLFOX started
Added Neulasta 6/28/18
7/9/18 CT scans show no masses or enlarged nodes, 2mm indeterminate lung nodule

Jannine
Posts: 55
Joined: Wed Jun 20, 2018 7:46 am

Re: Colon cancer: treatment and side effects

Postby Jannine » Tue Jul 31, 2018 7:44 pm

I didn't have any bone pain from Neulasta, fortunately. My dad has problems with an irregular heartbeat (he's taken meds for it at least since I was a teenager; not dangerous but it keeps him awake at night if he doesn't take something). Antihistamines aggravate his heart problems. I have no such symptoms unless I go too long without eating, but I once took an unfamiliar antihistamine and it made my heart race. Scared me pretty good. So I avoid taking new ones as much as I can. I'm hoping I won't get the bone pain bad; I don't much want to experiment with Claritin.

My platelet counts have been good so far, fortunately.

My sister is a medical lab technician in a hospital, and she said that when she looks through the microscope at someone's blood she can instantly tell if they're on Neulasta. The white blood cells just look really different. So weird.
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid colon resection (24 cm removed); no stoma.
1 noncontiguous tumor deposit found and removed; margins clear
7.5cm X 6cm X 2cm adenocarcinoma -- G2 (moderately differentiated)
T3 pN1c M0
31 lymph nodes tested, 0 positive.
5/2018 before surgery, CEA 11.2
6/2018 began 12 infusions adjuvant FOLFOX; CEA 3.7
7/2018: CEA 1.9; 2nd infusion delayed because of neutropenia; Neulasta after all future infusions
9/2018: CEA 2.8 at infusion #6

Jannine
Posts: 55
Joined: Wed Jun 20, 2018 7:46 am

Re: Colon cancer: treatment and side effects

Postby Jannine » Fri Aug 03, 2018 8:54 pm

I had FOLFOX infusion #3 today. My bloodwork was apparently amazing; the nurses said they wanted to frame it and hang it on the wall. Everything was within normal ranges, and I wasn't anemic this time, for maybe the first time. My white blood cell count was great, as my sister (who is a medical lab technician) predicted, so the neulasta did the trick there. My platelet count looked good too. And my weight is holding pretty steady, too.

The nurses warned me with some concern that I might get tired easily because my body is clearly working really hard to keep my blood counts up. They definitely want me to not overwork myself so I won't ruin my beautiful blood counts!

I don't know if this would help anyone else, but I ate a "little" 5 Guys cheeseburger (plus fries, couldn't resist) 3 days after disconnect, and then a Subway steak and cheese sandwich 2 days before my infusion this time. Oh and I also had smoked oysters a couple times in between, which have a lot of the good kind of iron. Otherwise I've been avoiding red meat but trying to eat plenty of protein and fiber.

I did exercise a couple of days ago; went to check out a gym and did a few exercises for them to check my fitness (squats, easy pushups on a box, and 10-second planks). I'm not sure they are the gym for me; I think I will do some more looking around before I make a decision. I definitely want to find something that's nearby and month to month with no contract. I might start with yoga first, though, and then ease into more active exercises. I have lost a lot of upper body strength with my weight loss, and I want to address that and also improve my cardio health.

Today I also asked for and got a hard copy of my two CT scans, and also the surgeon's report from my colon resection. The oncologist was kind of skeptical about us wanting the surgeon's report, and I can see why; there's a ton of medical jargon in there. The report does confirm that the inflamed part of my colon had attached to the uterus (which had been mentioned both before surgery based on the CT scan, and after surgery, so that wasn't a surprise). A gynecologist helped them keep the vagina and uterus out of the way while the surgeons separated things that needed to go from things that could stay. They didn't see any evidence that there was malignancy extending to my girly parts, so I kept those (except the uterine fibroid they removed to get it out of the way; good riddance).

I think my favorite line in the document is "The colon was eviscerated." I never thought I might be eviscerated and have it be a GOOD thing. Best evisceration imaginable. 10/10. Would prefer not to eviscerate again, however.
My next favorite line is "The patient tolerated the procedure well." :) Overall the report reflects what the surgeon told us in person: the procedure went very well, with no complications.

I did pick up the neulasta injection I need for Tuesday, and it is in the fridge.

I haven't had any notable new side effects yet; we got home about 5 hours ago. My appetite is still pretty good and I was able to eat a normal-sized dinner; homemade macaroni and cheese, and fresh veggies. The only thing I couldn't eat was the red bell peppers; they tasted like mud. Mud that tasted suspiciously like it had gross things growing in it. I gave those back to my husband.

I'm belching more than usual, about the same as after previous injections. The nutritionist seems to think that I may be getting the bloated stomach and belching rather than nausea. instead of nausea. If so, I'll take it. It makes it hard for me to eat much for 3-4 days, but I'd rather deal with the discomfort than have nausea. So I'm hoping she's right.

I am sure I also have the cold sensitivity this round, but I haven't tested it yet.

I did sneeze maybe 5 or 6 times during the oxaliplatin infusion, and I think I did that during the last one too. Hoping that doesn't get any worse or herald a potential allergic reaction.
Last edited by Jannine on Fri Aug 03, 2018 10:43 pm, edited 1 time in total.
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid colon resection (24 cm removed); no stoma.
1 noncontiguous tumor deposit found and removed; margins clear
7.5cm X 6cm X 2cm adenocarcinoma -- G2 (moderately differentiated)
T3 pN1c M0
31 lymph nodes tested, 0 positive.
5/2018 before surgery, CEA 11.2
6/2018 began 12 infusions adjuvant FOLFOX; CEA 3.7
7/2018: CEA 1.9; 2nd infusion delayed because of neutropenia; Neulasta after all future infusions
9/2018: CEA 2.8 at infusion #6

heiders33
Posts: 285
Joined: Sat Nov 04, 2017 11:08 am

Re: Colon cancer: my treatment and side effects

Postby heiders33 » Fri Aug 03, 2018 10:25 pm

I always sneezed a lot the day of the infusion, and I read somewhere to take Benadryl, which took care of it and also helped me sleep. The sneezing is most likely a mild allergic reaction to the drug.

I also belched a lot during chemo, and after the first couple days when the steroids wore off my appetite wasn’t great.

Sounds like you are doing pretty well, all things considered.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR with loop ileostomy
October 2017 - February 2018: XELOX six rounds
March 2018: reversal
April 2018: CEA 2.1, all blood counts normal
May 2018: CT scan showed liver spot
August 2018: Abnormal PET, CEA 2.4
September 2018: liver resection with HAI pump

boxhill
Posts: 118
Joined: Fri Apr 06, 2018 11:40 am

Re: Colon cancer: my treatment and side effects

Postby boxhill » Fri Aug 03, 2018 11:30 pm

I sneezed a lot before I started taking the Claritin.

I am interested that you saw your surgical report: my oncologist recommended against it. He thinks that I will perseverate. But he said that it was my property and I could have it if I wanted it. So far I have bowed to his opinion, since in general he treats me like an intelligent adult and not some kind of dolt who needs to be led by the hand and protected from too much information.

I'm still debating. :)
F, 64 at DX CRC Stage IV (or "3 1/2" per Dana Farber consult, LOL)
3/17/18 blockage, emergency surgery, r hemicolectomy
11 of 25 nodes
5 of 5 mesentery nodes, matted
0.5 cm sub-capsular liver met removed
pT3 pN2b pM1
Neg CEA, neg BRAF, KRAS G12D, germline mut ATM
dMMR, MSI-H, Neg for Lynch
5/4/18 FOLFOX started
Added Neulasta 6/28/18
7/9/18 CT scans show no masses or enlarged nodes, 2mm indeterminate lung nodule

Jannine
Posts: 55
Joined: Wed Jun 20, 2018 7:46 am

Re: Colon cancer: my treatment and side effects

Postby Jannine » Sat Aug 04, 2018 7:21 am

Boxhill, I realized later that I only got the first 3 pages of the 63-page surgeon's report. Looks like there was at least one brief op note from the assistant surgeon but the body of that was on page 4. I'm curious to see that part, because the assistant surgeon is a diverticulitis specialist, and that is something I am going to have to watch out for; CT scan shows that I have diverticules throughout my colon. So I may ask for pages 4-6 next time I go in, ha.

The report itself I only 1/4 understand, to be honest. It has lines like "The anvil was secured with 3-0 Pursestring suture." There are many words I would need to look up in every line, and I'm not sure I would really understand it even if I did all that. I knew I had a really good surgery with no complications. I think if anything had gone badly I might be sorry to know the clinical details. It would be just one more thing to worry about and wish I understood better. And I say that as someone who is not normally a worrier.

I know I can take Benadryl; it's possible that Claritin makes my heart race. An unfamiliar "new" (to the market, at the time) antihistamine did that to me once, and it may have been Claritin. So I'm hoping I can avoid taking Claritin, just in case. If I get bone pain that's not too bad maybe I'll try Benadryl first, since I know it just makes me sleepy. I'll put that on my list to ask the oncologist's NP about next time.
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid colon resection (24 cm removed); no stoma.
1 noncontiguous tumor deposit found and removed; margins clear
7.5cm X 6cm X 2cm adenocarcinoma -- G2 (moderately differentiated)
T3 pN1c M0
31 lymph nodes tested, 0 positive.
5/2018 before surgery, CEA 11.2
6/2018 began 12 infusions adjuvant FOLFOX; CEA 3.7
7/2018: CEA 1.9; 2nd infusion delayed because of neutropenia; Neulasta after all future infusions
9/2018: CEA 2.8 at infusion #6

Jannine
Posts: 55
Joined: Wed Jun 20, 2018 7:46 am

Re: Colon cancer: my treatment and side effects

Postby Jannine » Wed Aug 08, 2018 11:54 am

I gave myself my 2nd Neulasta shot yesterday morning, with my husband supervising. I had no bone pain after getting my first shot two weeks ago at the hospital.

Last night before bed my lower back hurt, which was odd but I didn't really think anything of it. Then when I got up in the middle of the night, my ribs ached. The rib pain has happened a few more times today. Mostly it's the ribs all the way around my chest, and my breastbone. So weird! The pain isn't too bad and it doesn't last long at all, so far. It happened just now when I took my first bite of lunch, too. It seems to be triggered by really odd things rather than normal activities like inhaling deeply or twisting my body. It acts very different from a strained muscle.

Does the bone pain tend to get worse with repeated neulasta doses? If it's going to stay like this, I can deal with it without any meds.
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid colon resection (24 cm removed); no stoma.
1 noncontiguous tumor deposit found and removed; margins clear
7.5cm X 6cm X 2cm adenocarcinoma -- G2 (moderately differentiated)
T3 pN1c M0
31 lymph nodes tested, 0 positive.
5/2018 before surgery, CEA 11.2
6/2018 began 12 infusions adjuvant FOLFOX; CEA 3.7
7/2018: CEA 1.9; 2nd infusion delayed because of neutropenia; Neulasta after all future infusions
9/2018: CEA 2.8 at infusion #6

AppleTree
Posts: 224
Joined: Fri Mar 18, 2016 8:16 am

Re: Colon cancer: my treatment and side effects

Postby AppleTree » Thu Aug 09, 2018 4:07 am

Having my port inserted hurt more than I imagined, but that pain wore off in a few days. Like a bee string and I could not raise my hand over my head. It was not really noticiable at first. Now I weigh 106 at 5'8" and the 3 prongs and tubing sticks out. I do not like anything rubbing on it...like bras and seatbelts! I bought new bras, being attentive to where they rested. The seatbelt I tuck under my armpit.

Get this. One day a nurse was trying to insert the thumbtack for chemo. She missed the port. What? I was so upset that I would not let her try again...I insisted on another nurse!

If I sleep on the side of my port, it will be sore. If I really feel the need to sleep that way, I put a line of pillows behind me that I can rest against to get the main pressure off my port. Even then, I can only sleep short periods on that side without it getting sore. So, keep that in mind.

Neulasta gave me horrible headaches and bone pain. Some days, felt like someone had my ribs in a vice grip. Some general pain killer and a walk around the park with the dogs is what helped the most. But man, was it ever difficult to force myself to get up and go help with the dogs, but it helped me a lot!

I dropped my phone...alot. Get a good case/screen protector. Carry a cup cozy in your bag when you are at restaurants to put your cold drink into.

All winter I was surrounded by pneumonia, flu, bacterial infections, etc...and did not get any of those. I really feel the Neulata carried me through. My platlets needed an extra week to regenerate, so toward the end we just went with a 3 week schedule instead of every 2 weeks.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper right lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July PET...CLEAR!

Jannine
Posts: 55
Joined: Wed Jun 20, 2018 7:46 am

Re: Colon cancer: my treatment and side effects

Postby Jannine » Thu Aug 09, 2018 8:16 pm

Oh ugh. Sounds like you've had a lot more trouble with your port than I have with mine. I mostly can sleep on that side without trouble.

I don't know if it would help you any, but I bought a small buckwheat pillow that I use to prop up my shoulder on that side so that I can sleep kind of curled up. I can even sleep on my stomach if I have the buckwheat pillow propping up my shoulder on that side. I snug the pillow up close to the port, without actually touching it. The buckwheat pillow is very solid and doesn't squish, so you have to get the positioning right.

With as much weight as you've lost, that might not work for you. I'm 5'10" and weigh 127 or so (down from about 145). So you're definitely skinnier than I am. Most of my sports bras have a racer back and I only have one that works with the port. Ugh.

I had not thought about bringing a drink cozy with me to restaurants! Unfortunately so far if I can't hold it, I can't drink it. So that wouldn't help me much, ha.

The hardest thing for me is to get out and get walking, with as hot and stormy as it's been here. I also have trouble getting out of bed in the morning, or I would just go for a walk first thing to get it done. I've always been one to laze around in bed as long as I possibly can, and I have yet to figure out how to get my butt out of bed quicker in the mornings.
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid colon resection (24 cm removed); no stoma.
1 noncontiguous tumor deposit found and removed; margins clear
7.5cm X 6cm X 2cm adenocarcinoma -- G2 (moderately differentiated)
T3 pN1c M0
31 lymph nodes tested, 0 positive.
5/2018 before surgery, CEA 11.2
6/2018 began 12 infusions adjuvant FOLFOX; CEA 3.7
7/2018: CEA 1.9; 2nd infusion delayed because of neutropenia; Neulasta after all future infusions
9/2018: CEA 2.8 at infusion #6

Jannine
Posts: 55
Joined: Wed Jun 20, 2018 7:46 am

Re: Colon cancer: my treatment and side effects

Postby Jannine » Mon Aug 20, 2018 9:20 am

I was disconnected yesterday from FOLFOX infusion #4. 1/3 of the way done, yeah!

Side effects haven't been very different this round. I started taking about 5mg of CBD oil a day this round, and my appetite seems better and I'm not having as much belching/bloated feeling in my stomach. I really don't care for the taste of the CBD, but it is better than feeling so "off". I did have some insomnia the first night after taking it, which worried me, but I haven't continued to have that problem. Last night I woke up every 2 hours needing to go to the bathroom because of all the water I've been drinking, but I didn't have trouble getting back to sleep, fortunately.

Weird side effect: I am pretty sure my hair isn't getting dirty as quickly as it would normally. I kept thinking I was imagining this, but I am sure I'm not. I normally wash my hair every other day, and since I started chemo I really can't tell when it's day 1 after washing my hair vs. when it's day 2. I have to think hard about whether this is a hair-washing day. I'm hoping this doesn't mean that I'll have dry scalp or severe dandruff problems once cold weather gets here. If anyone else has had this happen, I'd appreciate knowing I'm not the only one...

I had twitchy muscles in my hands and calves a fair bit with this infusion. Nothing severe but it makes it uncomfortable to hold a mouse for very long. This side effect seems worst during the infusion days, and isn't as bad today.

I am not yet having hand/foot syndrome or taste changes other than first bite. Cold sensitivity doesn't seem any worse than previous rounds. I was able to eat ice cream the last few days before infusion #4, although I still couldn't hold things that were freezer-cold.

No evidence of peripheral neuropathy yet. And I've finally figured out that if my hands get at all cold I have to run warm water over them for a long while to get them warmed back up again. If I only warm them up superficially I'll still get the pins-and-needles sensation in my fingers for a good half hour. Any cold seems to really penetrate.
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid colon resection (24 cm removed); no stoma.
1 noncontiguous tumor deposit found and removed; margins clear
7.5cm X 6cm X 2cm adenocarcinoma -- G2 (moderately differentiated)
T3 pN1c M0
31 lymph nodes tested, 0 positive.
5/2018 before surgery, CEA 11.2
6/2018 began 12 infusions adjuvant FOLFOX; CEA 3.7
7/2018: CEA 1.9; 2nd infusion delayed because of neutropenia; Neulasta after all future infusions
9/2018: CEA 2.8 at infusion #6

NHMike
Posts: 1723
Joined: Fri Jul 21, 2017 3:43 am

Re: Colon cancer: my treatment and side effects

Postby NHMike » Mon Aug 20, 2018 5:36 pm

Jannine wrote:No evidence of peripheral neuropathy yet. And I've finally figured out that if my hands get at all cold I have to run warm water over them for a long while to get them warmed back up again. If I only warm them up superficially I'll still get the pins-and-needles sensation in my fingers for a good half hour. Any cold seems to really penetrate.


You might consider electric handwarmers to counteract the cold if the cold sensitivity or neuropathy becomes a problem.
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

Jannine
Posts: 55
Joined: Wed Jun 20, 2018 7:46 am

Re: Colon cancer: my treatment and side effects

Postby Jannine » Tue Aug 21, 2018 9:12 am

NHMike wrote:You might consider electric handwarmers to counteract the cold if the cold sensitivity or neuropathy becomes a problem.


That's a good idea; thanks. I am already considering buying legwarmers for cold weather, ha. I still associate legwarmers with the 1980s, but I think they're a good idea all the same.

I already have a heated footpad I keep under my desk because I tend to get cold in the winter. I'm sure that will help with my feet, when cool weather gets here.
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid colon resection (24 cm removed); no stoma.
1 noncontiguous tumor deposit found and removed; margins clear
7.5cm X 6cm X 2cm adenocarcinoma -- G2 (moderately differentiated)
T3 pN1c M0
31 lymph nodes tested, 0 positive.
5/2018 before surgery, CEA 11.2
6/2018 began 12 infusions adjuvant FOLFOX; CEA 3.7
7/2018: CEA 1.9; 2nd infusion delayed because of neutropenia; Neulasta after all future infusions
9/2018: CEA 2.8 at infusion #6


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