New DX, Realistic Expectations

[cynthia_b]

I am so thankful to have found this site. I am two weeks post surgery with a laparoscopic resection of sigmoid region of colon. Despite some frequent and painful BM's I feel good and am fully functional. New language but tumor got an unfortunate T4 rating and there was 1 of 18 nodes affected. Facing chemo but appointments with two good oncs are a week away. Meanwhile researching, understanding new knowledge and trying to plan my life.
I love my job as an elementary school principal. It gives me great joy. Generally speaking when under Folfox chemo tx will I be able to work most days? It seems that tx usually occurs every two weeks. If things go well what can I expect the recovery from each of these rounds? I know it can all be different but I am a planner and feel comfort from knowing what is .... probably ... ahead. Would love your feedback.
C-

[sbrainbolt]

Hi Cynthia,

This site is a wealth of information and support. You won't find a better place to ask questions, vent, etc.

I worked through out my treatments. I didn't always feel great, but managed to stick it out most days.

Here is how my typical routine went:
Showed up for inpatient infusion usually 8:00am on Monday morning. I had issues with muscle cramping so they slowed my infusion rate down considerably which helped a bit. I usually was at the hospital all day on this day, but would have been a 1/2 day if I didn't have the muscle cramping issues. Connected to portable pump and sent home.
Pump disconnect 2 days later. This was about a 2 - 3 hour process including my drive time and dependent upon how long I had to wait once there.
Start feeling like I had a mild case of the flu, low energy, tired etc. usually on day 7.
Start feeling normal again a couple of days prior to starting over again.

The first treatment I had severe nausea. The "cocktail" of anti-nausea meds just wasn't working and I was totally discouraged. I mentioned it to my Onc. and he told me not to try to tough that out because there are many different combinations of medications it is just a matter of finding what works best for you. So, if you have any issues make sure you communicate with your Dr. so he can tweak your meds. They added some meds to the infusion line up. Ativan and/or Emrel I think.
I also took Ativan and Decadron, for a few days post treatment.

I had FOLFOX infusions. By the 3rd or so treatment the cold sensitivity set in. You will need to wear gloves to remove anything cold from the refrigerator or freezer and will get used to drinking room temperature water. If you live somewhere cold you will need to bundle up before venturing out. This side effect is cumulative so tends to get worse with each treatment, but some folks don't experience it and others do. Not sure why.

Suggestion: take a piece of hard candy with you when you go for treatments or to get connected or disconnected from the pump. They flush the port with Heprin - tastes like metal and a piece of candy really helps disguise that nasty taste. I used ginger candy or peppermint.

I found it satisfying to mark off each treatment with a great big "X" on a calendar in my office. Sounds silly, but it helped me with the "count down". We (husband, family and I) celebrated little things like 1/4, 1/3, 1/2 way there, etc. with a dinner out or a special meal at home and at the end went on a "NO MO CHEMO" trip to celebrate.

I am sure others will chime in with suggestions and personal experiences.

Good luck with your treatments!
Susan

[Beckster]

I am so thankful to have found this site. I am two weeks post surgery with a laparoscopic resection of sigmoid region of colon. Despite some frequent and painful BM's I feel good and am fully functional. New language but tumor got an unfortunate T4 rating and there was 1 of 18 nodes affected. Facing chemo but appointments with two good oncs are a week away. Meanwhile researching, understanding new knowledge and trying to plan my life.
I love my job as an elementary school principal. It gives me great joy. Generally speaking when under Folfox chemo tx will I be able to work most days? It seems that tx usually occurs every two weeks. If things go well what can I expect the recovery from each of these rounds? I know it can all be different but I am a planner and feel comfort from knowing what is .... probably ... ahead. Would love your feedback.
C-

You can also do Capox, which is oxi and Xeloda (same as 5/FU in a pill form.) You go in for your infusion with oxi and start your pills that night. 14 days of pills, twice a day, and one week off. You will have 8 cycles instead of 12. Did your oncologist offer this to you? Xeloda has less side effects and more tolerable, and you do not need a port.

Beckster

[radnyc]

Welcome to the club no one ever wants to be a member of. But, once you're here you'll find it to be a great place for support and information. My advice is to firstly: STAY ACTIVE, EAT HEALTHY and DON'T GIVE UP YOUR DREAMS. Try to not let the darkness of it all overwhelm you, look forward, not backward. There's a lot you can do to enhance your treatment and fight this disease. Exercise, diet and state of mind are very key, search this forum for advice on how to make the best of this challenging time for you, and reach out if you need to.

Al

[teri3]

I had the same dx and surgery. I did 11 rounds of Folfox and never had nausea or diarrhea. My experience was the same as Susan's . Fatigue and neuropathy were my only side effects. I was retired for other health reasons when I started but I hope you can keep working if that's what you want. I think having a purpose can be very good for most people. Good luck with your treatment.
Hugs,
Teri

[Stewsbetty]

Hi Cynthia,

I will share my experience just so you see the variety that can occur.

I was hooked up tuesdays. In at 930 and usually out by 130. I would be tired and very brain dead til Saturday. Then I would have diarrhea from Sunday til about Wednesday if the next week. Imodium helped keep this to only a couple times a day. Then I would start to feel better until the next Tuesday's infusion. I homeschool my children but was very thankful for their level of independence through this time. I know others have worked through their treatment but I don't think I would have had the brain power to do so.

Best of luck making your decisions.
Beth

PS. I had my dose lowered after I had a really bad reaction on cycle 2. This made the whole journey much more bearable. make sure your oncologist knows how you are feeling and reacting.

[PainInTheAss]

I had the same dx and surgery. I did 11 rounds of Folfox and never had nausea or diarrhea. My experience was the same as Susan's . Fatigue and neuropathy were my only side effects. I was retired for other health reasons when I started but I hope you can keep working if that's what you want. I think having a purpose can be very good for most people. Good luck with your treatment.
Hugs,
Teri

Me too, but I had bizarre side effects after the second infusion (I did Xelox so infusions were three weeks apart). My eyesight was so blurry I couldn't drive the day of the infusion. I had really bad muscle cramps and a hard time walking the day of infusion. I also would sleep 24 hours straight two days after. Many people like to do infusions on Thursday so the worst of the symptoms hit on the weekend. I never threw up, but I was really tired and my batteries would die pretty quickly. The tiredness was cumulative, so the last few rounds just wiped me out. I wasn't working at the time, but my Onc had another patient who worked full time during his chemo. Everybody handles it a bit differently, so you'll have to see how you do. You might breeze right through it.

[LMighty]

My mom also did 6 rounds of Xelox (+ Avastin starting 3rd round). First week after every infusion she will feel incredibly fatigued. Neuropathy gets a little bit worse after each infusion and she is still recovering from it (~4 months since last infusion). Her sense of taste also became ultra-sensitive. Had to avoid cold and/or spicy food, as a result.

But then again everybody handles it differently, sometimes VERY differently from what I have heard in this forum. I hope the side effects are minimal to you.

[rp1954]

Many stage 2's only do Xeloda.

Some CRC patients use inexpensive adjuncts like low dose aspirin, PSK, and other potent supplements. These extras even work for us, dealing with stage 4b. Although we buy a cheaper, different oral 5FU than xeloda, we found eliminating folic acid (bread, flour, crummy multivitamins) allowed higher 5FU doses with less side effects. Natural type folate vs leucovorin vs folic acid is discussed in the archives.

Doing a demanding job on chemo can be difficult to impossible for patients. Some people have eliminated most of their xeloda side effects with high dose IV vitamin C every 4 - 11 days (and probably some supplements). The high dose IV vitamin C also kills or stresses deadly KRAS mutant cells and also interferes with their sugar metabolism.

We've used cimetidine on post surgical CA19-9 levels in the teens and 20s, with chemo (UFT). From Japan, papers successfully targeted presurgical CA19-9 as a very common associate of reccurence in stage 2s and 3s, but easily cimetidine treatable (with a year of their daily oral chemo rather than cyclic as in the US with 6 months of oral xeloda).

[Coloncancerqueen]

I am a sixth grade teacher and managed to teach through my Folfox treatments. Because of the pump, I took off my day of infusion and the two days following. I never missed a day of teaching other than those days. Toward the end, it got harder but my staff and students were so supportive. I think going to work helped with the side effects and to deal with the whole mental part of this diagnosis. I also felt that I could help be a voice for others going through chemo etc. Of course everyone is different but I think you can do it!

[Marylandmaniac]

I had 6 rounds of Folfox before my surgery. I would go in on Tuesday and be in infusion room for a few hours so I just took that day off. I would work from home while I had the pump. My side effects were very mild. I was so worried before I started so it was a pleasant surprise. Most people were shocked to learn I was on chemo because I looked fine. I would have cold sensitivity but I never found it painful just annoying. I would be tired on disconnect day but in the early rounds I would go to gym the following day. By the following week I felt normal so I planned fun outings for those times. Towards the later rounds I found the fatigue would last one more day after disconnect. The night of the oxi infusion my muscles in my calfs would get tight. I found eating a banana and staying hydrated helped a lot. After round 6 I had 6 weeks off to prepare for surgery. This was when I noticed some neuropathy. It felt like someone had tied strings around my fingertips. They weren't completely numb. After surgery I had 4 weeks to recover and then I started the next 6 rounds. Round 7 and 8 I had Folfox. After round 8 my onc decided to stop the Oxi due to neuropathy. My toes had started feeling slightly numb. He said 8 rounds of Oxi is all I really needed and I confirmed this with Dr. John Marshall at Georgetown so I feel good about this. Now I just have 5 FU and just did round 11. I must say 5 Fu is much easier to tolerate and I find I am a little tired when on pump but day after disconnect I feel energy coming back. Only one more round to go!! I plan to celebrate by bringing bagels and donuts into the center I go to.

Hopefully things will go smoothly for you. I will say that I did use supplements which I talked to onc about and even met with a nutritionist about. I did 6k on vitamin D3, 4g of turkey tail ( psk - mushroom), milk thistle, and turmeric curcumin with bioperine (good anti-inflammatory). I also used modified citrus pectin and cimetidine to help prevent mets. The big things with supplements is you want to look for label of usp or msp. Supplements are not regulated so you want to make sure you are getting what you pay for. I know consumerlabs has a site that reviews and tests various supplements.

[CaliforniaBagMan]

Response to chemo cannot really be predicted. You have to feel your way along.

I experienced side effects worse than anything I have read here, except for posts by someone with a name something like Jude59. (spelling?) There is no possibility I could have worked-- just the feet blisters made it impossible to walk except with great care, and very slowly.

You might consider informing your employer that you want to work, hope to work, but may not be able to. Until you start, you just don't know. I did two weeks of chemo and barely noticed any effect. Then wham.

[horizon]

I had the same surgery in that area and same lymph node results. Keep your chin up and keep fighting! I did XELOX. Everyone reacts differently so that is unpredictable. Make sure to stay hydrated. What I did was take medical leave on infusion days (Wed) then work from home the Thurs and Fri after that. On Monday I was back at work and back in the gym. My infusions were every 3 weeks. If you have symptoms of neuropathy or anything else make sure to tell your Oncologist so that they can possibly adjust your dosage. During that time it felt like the end of treatment was impossibly far away. Now it's over five years ago for me. You'll get a lot of support here.

[cynthia_b]

So helpful all! I appreciate the different points of view and the help on supplements. I bought a book by Quillan, Beating Cancer with Nutrition and your suggestions validate many of what is suggested in my reading. I do have a supportive school district - I know they will accept what ever happens.
thanks all
Cynthia