Hello from a new member

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Jannine
Posts: 47
Joined: Wed Jun 20, 2018 7:46 am

Hello from a new member

Postby Jannine » Wed Jun 20, 2018 8:10 am

Hi all,

I'm new around here. I start FOLFOX therapy this Friday, and I'm feeling upbeat but pretty nervous about potential side effects. Here's my situation:

I had laparoscopic surgery to remove a malignant rectosigmoid mass in early May, after spending a week in the hospital. The surgery went very well, and the margins looked clean. The resection did not require a stoma, fortunately; they did have to take a little of the rectum but not much.

The staging in the pathology report is Stage 3, pN1c. 31 lymph nodes were tested, all were negative, but there was a noncontiguous mass nearby in the fatty tissue (which was also fully removed). The tumor was pretty large; 7.5cm x 6cm x 2cm. It was moderately differentiated.

I'm a 48 year old female and in good health. My only risk factor is a sedentary lifestyle over the past 12+ years, although I had started running semi-regularly over the past year and had just completed a 5k a few weeks before going to the hospital. I went for my first run since the surgery this past Thursday, and that went well; my stamina isn't great but the only discomfort I had was from the port area, which is still healing up. I do have pancolonic diverticulosis, which I'd like to keep on top of as much as I can.

One big concern I have is the possibility of losing weight. I am thin to begin with, and I had lost about 20 pounds from my typical weight (a week in the hospital on a liquid diet did not help with that). I've gained back about 5 pounds, but I feel like I really can't afford to lose much more.

My oncologist recommended 6 months of FOLFOX therapy. I've been doing research and I'm really hoping I won't have a lot of problems with neuropathy, but we'll see. My oncologist sounds like she's on top of things and will proactively manage any side effects so they don't get severe, which is reassuring. I like her nurse, too. I did get a referral to an oncologist at Johns Hopkins for a second opinion, and she called me and confirmed that FOLFOX was the way to go based on the details I had emailed to her.

Thanks for any positive thoughts you can send my way. I know I'm in a pretty good position, relatively speaking, but this is still scary.
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

NHMike
Posts: 1683
Joined: Fri Jul 21, 2017 3:43 am

Re: Hello from a new member

Postby NHMike » Wed Jun 20, 2018 10:08 am

You seem to have things together quite well.

Your tumor size was about 10% smaller than mine so I can imagine the discomfort of the thing.

So is your official stage 3A? I think that the protocols might be less chemo. There are certainly trials going on for half. I did the full six months because I'm 3B

Did the John Hopkins oncologist give an opinion on the number of cycles of FOLFOX?
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: 47
Joined: Wed Jun 20, 2018 7:46 am

Re: Hello from a new member

Postby Jannine » Wed Jun 20, 2018 10:55 am

I know it's stage 3 but didn't get a letter after that. Based on the breakdown over at www.cancer.net I think it has to be Stage 3B. The pathology report says it's pT3 pN1c pMX (they found nothing on a chest CT scan afterwards and the liver biopsy looked clean, so there's no evidence of mets, for what that's worth).

I'll ask when I go in on Friday about both the staging and the FOLFOX dosage. It sounds like the worst of the oxaliplatin side effects are mostly a matter of cumulative dose over time. So that will just be something to keep an eye on. Also I saw that a couple of recent studies indicate that there may not be a big statistical advantage in 6 months vs. 3 months of the oxaliplatin, when taking the neurotoxicity of the oxaliplatin into account. I'll do my best to stick it out, within reason.

The Johns Hopkins oncologist didn't make a comment either way about the 6 cycles of FOLFOX, so I assume she thought that was appropriate. She did offer to meet with me in person, but it sounds like my situation is pretty straightforward.

I have my prescriptions filled for both zofran and compazine, which they said I should take before going in for chemo. I also have ginger tea in case that helps. I'm really hoping I won't have much of a problem with nausea.

My husband does seem to have a head cold right now. He's been feeling run down for days, so I'm hoping it won't be catching by the time I go in for chemo. I'll let them know about it, in case it is something to be concerned about. Usually I only get his colds about 1/4 of the time, but things may go differently with me on chemo...
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

NHMike
Posts: 1683
Joined: Fri Jul 21, 2017 3:43 am

Re: Hello from a new member

Postby NHMike » Wed Jun 20, 2018 12:25 pm

Jannine wrote:I know it's stage 3 but didn't get a letter after that. Based on the breakdown over at http://www.cancer.net I think it has to be Stage 3B. The pathology report says it's pT3 pN1c pMX (they found nothing on a chest CT scan afterwards and the liver biopsy looked clean, so there's no evidence of mets, for what that's worth).

I'll ask when I go in on Friday about both the staging and the FOLFOX dosage. It sounds like the worst of the oxaliplatin side effects are mostly a matter of cumulative dose over time. So that will just be something to keep an eye on. Also I saw that a couple of recent studies indicate that there may not be a big statistical advantage in 6 months vs. 3 months of the oxaliplatin, when taking the neurotoxicity of the oxaliplatin into account. I'll do my best to stick it out, within reason.

The Johns Hopkins oncologist didn't make a comment either way about the 6 cycles of FOLFOX, so I assume she thought that was appropriate. She did offer to meet with me in person, but it sounds like my situation is pretty straightforward.

I have my prescriptions filled for both zofran and compazine, which they said I should take before going in for chemo. I also have ginger tea in case that helps. I'm really hoping I won't have much of a problem with nausea.

My husband does seem to have a head cold right now. He's been feeling run down for days, so I'm hoping it won't be catching by the time I go in for chemo. I'll let them know about it, in case it is something to be concerned about. Usually I only get his colds about 1/4 of the time, but things may go differently with me on chemo...


I have a document on staging and it indicates 3 months for low-risk (A-B) and then 6 months for high-risk (B-C) so B could go either way. I went with 8 cycles of Xeloda (pill form of 5FU in FOLFOX) and 6 cycles of Oxaliplatin. The XELOX protocol is 6 months for 8 cycles of 3 weeks while FOLFOX is 6 months of 12 cycles of 2 weeks. So I didn't do all of the Oxaliplatin; and I had my dosage reduced several times.

I got the ginger tea. It didn't really help me. I found that ginger chews were more helpful. Crystallized ginger is probably the most effective but you get a lot of sugar for it. I would have an array of hot drinks handy. I got some organic hot chocolate at Whole Foods which worked quite well. Unfortunately you can get tired of drinking tea or coffee or other hot things all the time. I even did the hot spiced apple juice thing. Having a device that can heat water quickly helps too.

My son had pneumonia just after I started chemo and I just did my best to avoid him. Then he passed it to my wife and I had to avoid her as well. They got over it and I didn't catch it.

If you live in a place where it gets cold, consider clothes or outfits that will cover as much of your open skin as possible. That's a long way off from right now.

There are lots of folks here who have been through this - feel free to ask questions and we'll do our best to answer them.
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

boxhill
Posts: 116
Joined: Fri Apr 06, 2018 11:40 am

Re: Hello from a new member

Postby boxhill » Wed Jun 20, 2018 3:08 pm

I'm kind of surprised they told you to take the anti-nausea meds ahead of time, when you don't even know yet whether you will have nausea. My FOLFOX infusion includes a couple of anti-nausea meds, then I have 3 drugs to take if I need them. I haven't touched them so far. (3 cycles)

The thing to do about hand and foot cold sensitivity is to stay ahead of it. Be careful not to touch anything cold without gloves or an oven mitt. Remember to run the hot water so that it's warm before you stick your hands in it. Consider putting on gloves and warm socks in the morning. If you do set it off, running your hands under very warm water will stop it. I found that I had to wear socks and gloves inside the house when it was 60F in May. (We had turned the heat off.)

My oncologist's NP told me to take 10 grams of glutamine per day plus a 100 B-complex capsule in order to gain some protection against neuropathy. To consume that much glutamine, you need to get it in powder form. Typically it comes with a 5 gram scoop. You just dissolve it in water and drink it. Almost no taste.

I also haven't experienced any significant loss of appetite. (Unfortunately, since I want to lose weight. :) )

So you never know.
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

LittleG
Posts: 8
Joined: Tue May 08, 2018 4:25 am

Re: Hello from a new member

Postby LittleG » Wed Jun 20, 2018 4:09 pm

Jannine wrote:I know it's stage 3 but didn't get a letter after that. Based on the breakdown over at http://www.cancer.net I think it has to be Stage 3B. The pathology report says it's pT3 pN1c pMX (they found nothing on a chest CT scan afterwards and the liver biopsy looked clean, so there's no evidence of mets, for what that's worth).

I'll ask when I go in on Friday about both the staging and the FOLFOX dosage. It sounds like the worst of the oxaliplatin side effects are mostly a matter of cumulative dose over time. So that will just be something to keep an eye on. Also I saw that a couple of recent studies indicate that there may not be a big statistical advantage in 6 months vs. 3 months of the oxaliplatin, when taking the neurotoxicity of the oxaliplatin into account. I'll do my best to stick it out, within reason.

The Johns Hopkins oncologist didn't make a comment either way about the 6 cycles of FOLFOX, so I assume she thought that was appropriate. She did offer to meet with me in person, but it sounds like my situation is pretty straightforward.

I have my prescriptions filled for both zofran and compazine, which they said I should take before going in for chemo. I also have ginger tea in case that helps. I'm really hoping I won't have much of a problem with nausea.

My husband does seem to have a head cold right now. He's been feeling run down for days, so I'm hoping it won't be catching by the time I go in for chemo. I'll let them know about it, in case it is something to be concerned about. Usually I only get his colds about 1/4 of the time, but things may go differently with me on chemo...


I was similar to Mike and 3B, ended up with 5 months (they counted the chemorads as 1 month) FOLFOX (but only managed 1/2 the Oxy, some at 75%. I work with kids in sport and was pretty clear long term neuropathy would impact my ability to do some parts of my job so as soon as the pins and needles didn't go, the dose was reduced and then when it was still there after a 3 week break they canned the oxy. The super drugs they gave me with the oxy actually made me feel better than with just the 5FU so my advice is just tell them everything, all the struggles and they adjust other meds. I ended up with an adjusted steroid regime that kicked the majority of the nausea and limited my crash after disconnect. I also found the 5FU infusion much easier than taking Xeloda - no need to worry about eating to take pills etc.

The one was good to get out of the way. Good luck!

Jannine
Posts: 47
Joined: Wed Jun 20, 2018 7:46 am

Re: Hello from a new member

Postby Jannine » Sat Jun 23, 2018 11:30 am

Thanks for the welcomes! I got a 2-hour infusion of Oxaliplatin and have my 5FU pump; I get that off tomorrow morning. My Oxaliplatin dosage was 72.5mg/m2; 145mg total.

I got clarification on the anti-nausea meds when I went in. They suggested that I take the zofran in the morning and evening for the first 2-3 days to head off any nausea, and if I need more add the afternoon dosage; if that still doesn't work, add compazine in between so I'm taking something every 4 hours (which would be enough to cover me at the time the zofran is wearing off, but wouldn't provide constant coverage from both). It's a simpler pill regimen than every 8 hours + every 6 hours, which I appreciate. They did give me anti-nausea meds before the infusion, so I don't need to take them myself. I had held off on taking them, so I'm glad I did! Thanks for that.

At any rate, I took a zofran last night and one this morning and I'm not feeling any nausea at all (I did have a stomach ache when I first woke up, but that passed). I'm thinking I will skip the meds this evening and see how that goes.

I'm already having some cold sensitivity, but it's not too bad. Had a sip of cold water without thinking after getting home and was like NOPE. So I'm getting filtered water out of the fridge and microwaving it a bit to bring it up to room temperature. Also last night I had a banana and it was like FLAVOR EXPLOSION in my mouth. Made my jaw ache horribly. I took more conservative nibbles and was able to eat it slowly without the discomfort. Fortunately this morning I haven't had any trouble with anything I've eaten, whew. That banana worried me! And my coffee tastes fine today, at least. Whew.

No dry mouth yet, but I've got my fixings for baking soda rinse. The pump seems to be functioning fine. I'm in the Baltimore/DC area and I'm glad I won't be having to deal with the cold sensitivity in the coldest months.

I hadn't heard about the glutamine etc.; will ask the NP about that.

Thanks, all. I appreciate 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

NHMike
Posts: 1683
Joined: Fri Jul 21, 2017 3:43 am

Re: Hello from a new member

Postby NHMike » Sat Jun 23, 2018 7:26 pm

Jannine wrote:Thanks for the welcomes! I got a 2-hour infusion of Oxaliplatin and have my 5FU pump; I get that off tomorrow morning. My Oxaliplatin dosage was 72.5mg/m2; 145mg total.

I got clarification on the anti-nausea meds when I went in. They suggested that I take the zofran in the morning and evening for the first 2-3 days to head off any nausea, and if I need more add the afternoon dosage; if that still doesn't work, add compazine in between so I'm taking something every 4 hours (which would be enough to cover me at the time the zofran is wearing off, but wouldn't provide constant coverage from both). It's a simpler pill regimen than every 8 hours + every 6 hours, which I appreciate. They did give me anti-nausea meds before the infusion, so I don't need to take them myself. I had held off on taking them, so I'm glad I did! Thanks for that.

At any rate, I took a zofran last night and one this morning and I'm not feeling any nausea at all (I did have a stomach ache when I first woke up, but that passed). I'm thinking I will skip the meds this evening and see how that goes.

I'm already having some cold sensitivity, but it's not too bad. Had a sip of cold water without thinking after getting home and was like NOPE. So I'm getting filtered water out of the fridge and microwaving it a bit to bring it up to room temperature. Also last night I had a banana and it was like FLAVOR EXPLOSION in my mouth. Made my jaw ache horribly. I took more conservative nibbles and was able to eat it slowly without the discomfort. Fortunately this morning I haven't had any trouble with anything I've eaten, whew. That banana worried me! And my coffee tastes fine today, at least. Whew.

No dry mouth yet, but I've got my fixings for baking soda rinse. The pump seems to be functioning fine. I'm in the Baltimore/DC area and I'm glad I won't be having to deal with the cold sensitivity in the coldest months.

I hadn't heard about the glutamine etc.; will ask the NP about that.

Thanks, all. I appreciate it. :)


There's a thing called First Bite where you take a bit of something and it hurts. Then it's fine afterwards. So you remember that your first bite should be small and slow.

I bought an electric kettle so that I could always have hot water in a minute (we didn't have a microwave at the time). My wife likes the electric kettle now. I didn't need to use it so much when the weather got out of the deep freeze. I also got to know the folks in the office with Raynaud's Disease - I got some tips from them for dealing with the cold weather. You're fortunate in that you are starting during the summer.
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

kiwiinoz
Posts: 1095
Joined: Thu Jan 03, 2013 11:44 pm

Re: Hello from a new member

Postby kiwiinoz » Sun Jun 24, 2018 7:05 pm

Hi Jannine

Loosing weight was something I had to worry about too and my biggest way of keeping on top of the nausea was talking anti nausea tablets as soon as any symptoms started. I tried to keep my fluids up as much as I could and I also found that if I kept taking electrolyte supplements I was ahead of the game. If I didn't do that then I found I got in a bad way and one time I spent two days vomiting after my 3rd round of Folox, which I never wanted to repeat again.

The longer it went the worse my neuropathy got, which was kind of ok. I kept on top of the first bite syndrome, lock jaw, and the worse the neuropathy got, it was almost better. I really like running, and when the first effects of neuropathy came in I really felt it, but the worse it got, the less I felt it in my feet when I ran.

I found if I was on top of fluids and electrolytes then all was good. I was introduced to nuun electrolyte tablets, which I think are a US brand so you should be able to get them.

Good luck with it and keep dropping in.

Kiwi
Stage IV Rectal Cancer (39 Year old male at dx)
pT3N0M1 (wish that was M0)
Diagnosed 05 Dec 2012
LAR 05 Jan 2013
VATS 27 Feb 2013
FOLOFX April 2013 - Sep 2013
Clear Scan 03 Dec 2013 - 27 Feb 2018
Port Out 26 March 2015

NHMike
Posts: 1683
Joined: Fri Jul 21, 2017 3:43 am

Re: Hello from a new member

Postby NHMike » Mon Jun 25, 2018 9:56 am

kiwiinoz wrote:Hi Jannine

Loosing weight was something I had to worry about too and my biggest way of keeping on top of the nausea was talking anti nausea tablets as soon as any symptoms started. I tried to keep my fluids up as much as I could and I also found that if I kept taking electrolyte supplements I was ahead of the game. If I didn't do that then I found I got in a bad way and one time I spent two days vomiting after my 3rd round of Folox, which I never wanted to repeat again.

The longer it went the worse my neuropathy got, which was kind of ok. I kept on top of the first bite syndrome, lock jaw, and the worse the neuropathy got, it was almost better. I really like running, and when the first effects of neuropathy came in I really felt it, but the worse it got, the less I felt it in my feet when I ran.

I found if I was on top of fluids and electrolytes then all was good. I was introduced to nuun electrolyte tablets, which I think are a US brand so you should be able to get them.

Good luck with it and keep dropping in.

Kiwi


Nuun is on sale at Whole Foods and Amazon right now. I ordered 12 tubes (family likes them too).
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: 47
Joined: Wed Jun 20, 2018 7:46 am

Re: Hello from a new member

Postby Jannine » Mon Jun 25, 2018 10:44 am

Thanks for the tip; I am not a fan of most sports drinks because of all the sugar. My running career has been spotty at best, lol. I do fine when I sign up for training and have a set time to get together for a run with others, but I'm not great at setting a schedule and sticking with running on my own. My few 5Ks have all been about half walking, half running, but I'm pleased to have done that much. My husband runs sporadically too, but he's much faster than me, so we're not well-matched for running together. We do regularly participate in a group fun run once a week, but I'd like to be a little more active than that. Does the fatigue tend to be worse during the week after treatment? If so maybe I could try to run on the off weeks, to avoid wearing myself out.

I got disconnected from my first 48-hour 5FU canister yesterday. Went to bed early and I'm feeling a bit tired today, but it's not too bad.

Yesterday evening I had a permanent cap pop off of one of my teeth, so I need to go get that cemented back on today. I did not expect to be missing work right after my first chemo treatment because of a tooth problem, of all things! Fortunately I realized what had happened right away and didn't bite into it or swallow it.

The thing that's hardest for me right now is that I usually like to sleep on my stomach, and the port really makes that hard to do. I'm sure I'm happier getting the drugs through the port, but man is it inconvenient. Hopefully it will get less uncomfortable; right now it's just a couple of weeks old, and it's a lot less sensitive than it was at first. The glue over the incision is about half-flaked off.
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

benben
Posts: 297
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: Hello from a new member

Postby benben » Mon Jun 25, 2018 11:08 am

Weight loss was an issue for me, but mostly due to chemo induced Diarrhea.
Day of diagnosis I weight 183 lbs. At treatment 7 I was down to 153 lbs.
That was incidentally also the last treatment I had with Oxaliplatin.
The oxali had wreaked havoc on my blood counts (mostly white) since the very first treatment.
Neuropathy was also getting pretty bad at that point. I could still button shirts and use screw drivers, but I had constant tingling sensation in fingers and feet.

Good news is, as soon as the Oxali was stopped I started gaining weight back.
Within 2 months of no Oxali I was back to my pre-treatment weight.
The neuropathy increased for a couple months but by third month post treatment was next to nothing.
I'm 8 months out and its virtually nothing. Most of the time I can't sense any neuropathy at all. I can a little in hot shower on the feet.

best of luck to you.
keep the onc posted on any and all side effects - especially neuropathy.
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
zarxio all treatments
Treatment 7 reduced to 75% OXI
Treatment 8-12 - NO OXI, just Luke and 5FU
10/20/17 CT- NED
3/18 Scope - Clean
7/18 CT-Scan - Clear, but CEA 4.6 :(
8/30 CEA 2.6

kiwiinoz
Posts: 1095
Joined: Thu Jan 03, 2013 11:44 pm

Re: Hello from a new member

Postby kiwiinoz » Mon Jun 25, 2018 5:49 pm

Jannine,

Give Nuun a go, it is not a "sports drink" as such as it is not full of sugar. It is an electrolyte replacement tablet you put in water to dissolve and drink. An ex member (Brownbagger) who was an avid long distance cyclist put me on to them and I use them a lot now with running. If I do a longer run I will always have one to replace both fluid and electrolytes. I was having issues with diarrhea like NHMike and this was the one thing that really helped me.

Bit of a bummer about your tooth, and hope you can get that fixed, back on track and moving forward again.

A few more weeks and you will stop noticing the port too.

Kiwi
Stage IV Rectal Cancer (39 Year old male at dx)
pT3N0M1 (wish that was M0)
Diagnosed 05 Dec 2012
LAR 05 Jan 2013
VATS 27 Feb 2013
FOLOFX April 2013 - Sep 2013
Clear Scan 03 Dec 2013 - 27 Feb 2018
Port Out 26 March 2015

Jannine
Posts: 47
Joined: Wed Jun 20, 2018 7:46 am

Re: Hello from a new member

Postby Jannine » Mon Jun 25, 2018 7:01 pm

Ugh, I don't want to be needy but I need some feedback.

Having some belly discomfort now; a heavy feeling that might actually be gas, maybe? Or may be gas this evening, at any rate... I've been having it off and on in the mornings and the evenings since the Oxi infusion, but it hadn't seemed bad enough to note in my symptoms log until today. It's not preventing me from eating, but it does have me nervous. I haven't felt nauseous yet, at least. Is this common? I don't have acid reflux (or haven't in the past).

Thanks.
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

MissMolly
Posts: 556
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Hello from a new member

Postby MissMolly » Mon Jun 25, 2018 7:39 pm

I will chime in with an additional Thumbs Up recommend for Nunn’s Tablets for those looking for sources of quality hydration.

Nunn’s Tablets have NO sugar. They are an electrolyte replacement supplement that dissolve readily in water (or other clear liquid). Nunn’s come in a variety of flavors. Light and refreshing. The Nunn’s “energy” formulation has added 40 mg caffeine. The Nunn’s “hydrating” formulation has no caffeine.

CeraLyte is an additional high-quality electrolyte replacement. It comes as a powder in single-serve packets, similar to Emergenc. CeraLyte makes several electrolyte formulations to counter dehydration. One formulation is specifically tailored to the needs of individuals with ileostomies. There is even a formulation for canines/dogs (ex. rehydration needs of dogs who accompany their owners on backpacking excursions). CeraLyte is also sugar-free. You can purchase CeraLyte through Amazon as well as through the CeraLyte web site.
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.


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