Is anyone else about 3 months post FolFox?

[polluxx]

I’m checking in to see if anyone is at the same point in treatment so we can compare notes.

I’m having a “base of skull to thigh” PET scan in a week or so. I’m starting to get pretty nervous about that.

I can tell that the numbness in my hands is getting better. I think I can see an improvement in joint pain too, but my feet are still pretty numb.

I’m more depressed and pessimist than I have been on the journey so far, but my oncologist said that more patients break down during their 3 month appointment than any other time. So it may just be normal.

[Lee]

Yes, those 3 months follow up can be rough. The first 6-7 weeks, I'm okay. Butt the closer it gets to scans, Dr appoint, etc, yes it could get bad. Actually the first 3 month following chemo, guess I was okay. It was the next 3 month visit, that I did not sleep for 24 hrs following that visit. I was SUPER keyed up. It does get easier the longer you get pass chemo, & those first 2-3 years are the hardest.

Something that worked for me, as I was getting closer to scans, bloodwork, etc & if I was starting to stress, I would remind myself, nobody know anything at this time. Save the stress until after tests are done. Than I would allowed myself to have a major melt down.

Something that also helped me, as long as I was learning something new each day, I figured I would not be dying anytime soon (mental game) & and I learned some pretty strange stuff. Ever heard of "mourning jewelry". I found a piece at a very good price. When I told the lady behind the counter what it was, she dropped her jaw, she had no idea.

Is there a reason they are doing a PET scan?

Good luck, one day at a time. You are in my thoughts & prayers for good results.

Lee

[roadrunner]

I am a stage 3 patient who at this stage has no known cancer in my body — chemo, CRT, and more chemo got it down to a 3x5 millimeter nodule that was removed through transanal excision — but I just recently went through a scan of a lung nodule (appears stable), and have had lots of other scans, and my means of coping so far is to entirely forget my pre-cancer complacent (some might say blissfully ignorant) perspective and try to concentrate much more aggressively on the here and now. Right now, I can’t imagine ever taking any long term future for granted again, and I don’t assume I’ll get there. Not being negative — I hope I live a long time, and my doctors believe my odds are good. But any of the many scans I hope to be taking in the future may disagree. So I figure each time I walk out with good news it’s a bonus, and I will try to be ready for the bad news if it comes, and deal with it as best as I can then (or so I hope). For the rest of my life, I want to remain mindful of the fact that I may receive bad news at any time, but hopeful that I get as much good time as I can, and that I’ll be as ready as I can If a new challenge arises. That helps me walk out of the scans, anyway.

[roadrunner]

As far as FOLFOX goes, I did 8 cycles, but split by CRT and some delay, so just started getting the neuropathy by the end. It built up for a month or so, then leveled off, and now is mostly gone. I was amazed, however, how long it took to get my strength back after 8 cycles. I’m now nearing 3.5 months out, and for the first time feel like exercising hard and not flagging early. (And I was a serious runner before cancer and treatment.) that stuff is heavy duty.

[Green Tea]

... I’m more depressed and pessimist than I have been on the journey so far, but my oncologist said that more patients break down during their 3 month appointment than any other time. So it may just be normal.

No FOLFOX here, but lots of other chemo instead, and about 93 months since last chemo. Like you say, I think it may just be normal to have anxiety at this stage. I think that research would show that the high anxiety levels experienced just after the completion of chemo can be explained, in part, by the damage done by the prior chemo regimen to the neurotransmitters (e.g., serotonin,dopamine, etc.) and to other related neural structures that are supposed to control anxiety and mood. This post-chemo anxiety we experience is more like generalized, or free-floating anxiety that tends to attach itself to any concern we may have, big or small.

I read somewhere (but I can't remember where) that the two most frequent complaints post-chemo are (1) extreme fatigue, and (2) elevated anxiety levels. Both of these are due to enduring after effects of treatment. But there are other long-term effects, too, that may need to be addressed:

Late Effects of Cancer Treatment
https://www.livestrong.org/we-can-help/healthy-living-after-treatment/late-effects-of-cancer-treatment

Long-Term Side Effects of Cancer Treatment
https://www.cancer.net/survivorship/long-term-side-effects-cancer-treatment

The Effects of Chemotherapy on Your Body
https://www.healthline.com/health/cancer/effects-on-body#1

Late and Long-Term Effects of Treatment
http://www.cancer.ca/en/cancer-information/cancer-journey/life-after-cancer/late-and-long-term-effects-of-treatment/?region=ion%20about%20follow-up%20care?

If you are interested in exploring some natural approaches to stress reduction and to anxiety reduction you could look at the resources cited in some of the past posts on this forum, e.g. :

Stress Reduction Programs
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=59711&p=474430#p474430

If you are seriously interested in actively minimizing your chances of recurrence in the 5-year followup period, you could look at some of the links in the post below.

Survivorship Care Planning
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=63578&p=499570#p499570

[polluxx]

Thank you for all of the helpful links!

I know that at 2 months out, my neuropathy was still increasing, but it is slowly getting better in my hands now. I’ve been diligent about exercising, and swim 6 days a week. I know I would feel better if I cleaned up my diet too, but I haven’t haven’t quite gotten there yet.

I’m still a little confused about what my follow up protocol is going to look like. CEA is not a good indicator for me. It was barely 2 when I was diagnosed and had a heavy tumor load. My insurance won’t pay for CTdna without my oncologist jumping through a ton of hoops and since she isn’t a big fan anyway, I don’t think she is going to do it.

She did agree to scans every 3 months instead of every 6 but she really doesn’t recommend it because she says that there is no study showing that would catch a recurrence sooner and it just doubles the amount of radiation I’m exposed to. I’m not sure why we are doing a PET scan instead of a different kind. I’m pretty worried about trying to be still for 20 minutes or more. Hopefully they will give me something to calm me down first.

I like thinking of this time as a bonus. My dad used to say he was in extra innings. I’m trying to be mindful of that.

[Green Tea]

... I’m not sure why we are doing a PET scan instead of a different kind. I’m pretty worried about trying to be still for 20 minutes or more. Hopefully they will give me something to calm me down first..

Good luck on your upcoming scan. Here are some links on PET/CT scan preparation:

PET/CT scan prep guidelines
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=55468&p=439953#p439953

[LynnMarie]

Thank you, polluxx, for starting this thread and everyone else for responding!

I am Stage 3a and 4 months post FOLFOX (last 5 w/o oxali because of allergic reaction). Had my 3-month follow up in November. CEA had gone up from 1.4 at end of chemo to 4.1, so we did a CT scan. It showed NED. Just retested CEA this week = 2.8 (using the test where 0- 2.9 is normal). I'm still nervous that it is higher than at end of chemo but happy it did not continue to increase. Back to wait and see how it goes at 6-month follow-up. I have KRAS G12V mutation and poor differentiation, so definitely feel the anvil hanging over my head.

Like many of you, I have found post chemo more stressful than during chemo. I think focusing on the treatments & effects allowed me to not get too existential. To DO instead of think and feel. But now...this awful limbo. It feels like everyone expects me to move on and not let cancer define me, but how can it not? How can facing death not change you?

I'm coping by creating my own "treatment" = diet, exercise, yoga, meditation, long walks in nature, supplements, IV Vitamin C, acupuncture, healing touch. I figure all of these things are good for me even w/o cancer, so the only downside is the expense.

I'm also in the process of enrolling in a clinical trial that uses psilocybin ("magic" mushrooms) to treat depression in cancer patients.

Green Tea: Thank you for all the links!

[polluxx]

I just wanted to update than I had my PET scan yesterday. The hospital sent the results to my portal almost immediately. The most important line said, “No evidence of recurrent or metastatic colon cancer” I’m going to go over the report with my doctor today.

The scan did pick up something going on with my thyroid and indicates that I now have a fatty liver. I’ve read that chemo can cause that. I ordered some milk thistle and I’ll ask my doctor if it is okay to take.

I’m also having some depression that I haven’t had before except for postpartum. I’ve read that chemo can damage neurotransmitters, but who knows. Dealing with cancer during a pandemic could also just be depressing. I’m going to see if she thinks I need meds to get over this.

It would be great to feel like my old self again!

[Green Tea]

... I’m also having some depression that I haven’t had before except for postpartum. I’ve read that chemo can damage neurotransmitters, but who knows. Dealing with cancer during a pandemic could also just be depressing. I’m going to see if she thinks I need meds to get over this. It would be great to feel like my old self again!

First, congratulations on the good scan. May you have many more good scans in the future!

About depression, I suppose you know this already, but I'll mention it just in case. There's a difference between "depression" and "anxiety" and a difference in the kinds of meds prescribed to deal with these conditions. In the case of anxiety meds like Xanax or Ativan, the meds belong to a class called benzodiazepines and are habit-forming. They should not be used for more than a month or so at a time. For depression meds, I think the situation is different. They can be used over a long period of time without adverse effect. If you are prescribed a medication, be sure you find out what class of med you are getting.

Benzodiazepines

[polluxx]

Thanks!

I had a very good visit with my oncologist yesterday. She says that she sees this cycle of depression at the 3 month mark with many of her patients. In fact, it isn’t unusual to have people start crying at their 3 month appointment. She feels like I am already on the upside of it, but if I’m not feeling much better in 3 months, we can start therapy. She reminded me that even though my blood work looks great, even though my scan looks great, I’ve been through the ringer, and there are going to big emotions surrounding that.

I almost died before going to the ER with 5 pulmonary embolisms. That is when they found my tumor, then I started bleeding out in ICU because a doctor gave me a bolus of heparin right after surgery. She said it is just going to take longer for my emotional healing to catch up with my physical healing.

But the big news is that she got me in a study to get CTdna testing every 3 months at no cost to me. I’m also going to have a PET scan every 6 months. She is just going to forego CT scans because if something shows up on a CT scan, we would have to order a PET scan anyway, so I might as well only pay for one.

So it looks like I’m going to have a good surveillance plan going forward.

Thanks for the heads up about depression and anxiety meds. I am going to stay on Gabapintin for another 3 months to deal with nerve pain, and she said I could take milk thistle to help my liver recover from chemo, but I’m not taking anything other than that.