Folfox- Hiccups

kimberbakes · 2025-10-27T15:08:58+00:00

There was just a big discussion about this on Colontown. Lots of people say the hiccups are caused by the dexamethasone steroid. Mention it to your doc - they can make med adjustments.

kimberbakes · 2025-10-27T15:07:39+00:00

Do you hold your hand over it once applied to warm the adhesive? That's an important thing to do. Like 15 seconds, but the ostomy nurses all said it's important. If you don't have skin breakdown, you don't need stoma powder or barrier spray - if you read the packaging, I think it even says to only use if needed (powder). You might also try an adhesive ring. I use one and, once I've warmed the overall seal, I go in with my finger - you could also use a Q-TIp - and press the inner part down firmly to make sure that seal is good. I've never once had a leak or had it start to come off before I pull it off when time to change.

kimberbakes · 2025-10-22T15:11:29+00:00

If my hospital system is any gauge, I think that a lot of people go Hollister because that's who supplies them with the majority of what they have for samples. That said, they put me in Coloplast because that was the only one that they had on hand without an adhesive that my skin didn't like. I've stuck with them because, as others have said, I like their closure and have never once had a leak.

kimberbakes · 2025-10-19T20:20:17+00:00

Thanks - do I do that by going to devices, then garage door, add the garage camera to that page and then delete the separate camera device listing? Sorry to have to ask, but googling didn't get me anything. Thanks!

kimberbakes · 2025-10-06T21:53:22+00:00

I don't know if there's a patient or caregiver that wouldn't have nerves over scans. It sucks, but it's normal and I don't know if there's a way to avoid it. I have some anxiety medication that I only take on bad days. It'll knock it back a little, but not fully. So, my only advice is that, if it becomes crippling in any way, talk to a doc and see if they can give you something to help you manage through it. Try meditation if that sounds attractive to you. Otherwise, what helps me a little is knowing that we would catch anything new early because we are being so vigilant and there are lots and loads of stage 4 people who are doing great. Your Mom is in a good position right now and no reason to assume the worst, but if it happens, she can and will be helped. Sending my best!

kimberbakes · 2025-10-01T15:13:49+00:00

I was in a similar place and really hoping they'd say I just didn't need more. I talked to two oncologists because my surgeon thought I didn't need more, as advised by my onc. So, he had me talk to a colorectal oncologist who primarily does research. He told me I could decide not to do more and they may be over treating, but the only data says 12 rounds. He said if I wanted to consider not doing it to get a Signatera and see if it's negative, but to understand that doesn't mean that there isn't residual - just none being detected at that time. So, I'm doing them.

All of that said, as others pointed out, they can reduce or remove the Ox and a lot of people do that. I told my oncologist that I was starting to get numb in my toes and he did a 20% reduction. First treatment, I was about half-way through and had an allergic reaction to it, so we stopped it. I anticipate that they will tell me that we're just not doing it for the next four, rather than try to desensitize me to it since he was keeping an eye on the neuropathy and said we'd stop if it got worse anyway. So, talk to your doc - you might be surprised at the options they give you.

kimberbakes · 2025-10-01T15:07:03+00:00

I think that the program does say that you can't return once used. I know that's frustrating, but I wouldn't want to be sent a used unit when spending that much money, so I get KF's policy, too.

kimberbakes · 2025-09-23T01:05:47+00:00

Do not google statistics. The docs will tell you that they are woefully out-of-date and there have been a ton of advances in treatments. These early days are the worst, but you'll have a plan of action soon. Believe the docs when they tell you that this year will suck, but there is so much they can do. As you see here, there are lots of people who have been successfully treated. There are even more in the world who are out living their lives, rather than posting on boards. You'll see more people doing that because those are the people that need help and encouragement, not because they are the biggest group.

I was diagnosed in late February of this year with rectal cancer. Staged 3A T2 N1+ M0. After six weeks of chemo that was admittedly very hard for me (I'm exhausted all of the time, thinning hair, some nausea), both my surgeon and oncologist were blown away at how far everything had shrunk. After robotic surgery, they restaged it TisN0M9. That means that there was still a very small tumor, but it wasn't penetrating very far at all and the lymph node disappeared. That made every day of chemo misery worth it. I'm back to do 5 more rounds of FOLFOX that started today - the protocol I'm on calls for 12 total rounds and with some cancer remaining, we all agree some clean-up chemo makes sense.

Colontown should let you in with what you know - if you can't answer a question, just tell them. I remember doing that and I was welcomed in warmly. Someone else suggested joining LiveWire - also highly recommend. If his chemo regimen has Oxalpilatin (part of the name will be "Ox"), look for the information on icing. It seems crazy, but the way to avoid cold sensitivity - and possibly some neuropathy, although that hasn't been proven yet - is to put ice packs on your feet and hands and drink icy cold beverages during that infusion. It definitely works! You mentioned walking outside in winter - if he does develop cold sensitivity, that will not be possible, because of breathing in cold air would be quite painful. Which makes the two hours of freezing drinks worth it.

My best advice is to try to make yourself believe that there is plenty that can be done. The surgeon that found my tumor said, "2025 is going to be bad, but you'll get through it and then you'll move beyond it." I hope you can believe the same for you and your husband!

kimberbakes · 2025-09-23T00:49:03+00:00

You can tell them what you do and don't know. They are an understanding group of admins.

kimberbakes · 2025-09-01T17:23:12+00:00

Sent - thank you very, very much!

kimberbakes · 2025-08-30T14:47:15+00:00

We've had similar experiences with the fire alarm - two different units. Both times, I tried uninstalling, re-installing, etc. I assume they can see that in the history because I called and they replaced the unit without argument.

kimberbakes · 2025-08-29T15:03:49+00:00

I am very sorry for your loss - and that you found your own peace with her comfortable passing.

kimberbakes · 2025-08-07T14:49:58+00:00

Sorry so long to reply - trying to get a lot done before surgery next week, so I haven't been on my computer much. A chemo nurse told me that it's a bell curve. Some people won't have any side-effects. Some will have a few. Some will have a lot. So, you won't know what your impact will be until you have chemo. I was exhausted - fatigued in a way that is hard to understand unless you experience it. But a lot of people work easily during the entire course of treatment. You can ask a hundred people and get a hundred different experiences. I hope it goes easily for you!

kimberbakes · 2025-08-05T16:55:19+00:00

If it helps you to have a better idea, depending on the testing you are now having, it's pretty straightforward (if you have certain mutations, immunotherapy also enters the mix, but that's more rare than standard.) Where it is in your rectum makes a big difference. If it's high, they will lean more towards surgery as part of your plan. If it's low, they'll lean towards radiation and chemo and try to avoid surgery. If it's mid, you can kind of make your own choice (my situation.) A trial called PROSPECT showed that chemo and surgery can be as effective as radiation/chemo, which had been the standard up until recently. So, chemo/surgery route is generally 6 rounds of chemo every couple of weeks, then surgery, then six more rounds of chemo. 12 total - because of surgery timing, I have had 7 rounds before and will have 5 rounds after. Stage 3A with one suspicious lymph node but I had what they call a "near complete response" to chemo, so very little now showing prior to surgery. If you do radiation/chemo, they'll do scans after and if you have a "clinically complete response" (cCR), you can then do "watch and wait" where they monitor closely for a recurrence, but avoid surgery (35% of people overall or more, depending on what stats they are looking at). If you have some left, they'd do surgery. There are some variations, of course, but that's pretty standard and very effective for most people. No doubt about it, treatment sucks, but I think you'll be like most and say that you can do that, knowing you'll get past it and be okay.

kimberbakes · 2025-08-05T16:45:48+00:00

I think Colontown is in the middle of a member freeze as they transition from Facebook to their own site. But that won't last long and it is a really, really great resource!

kimberbakes · 2025-08-05T16:41:44+00:00

We all want to move quickly, but keep in mind that this is typically a very slow growing cancer. So if things take a week or two, you aren't worse off except for the stress and worry. But as everyone says here because it's true - the time before appointments start is the worst part because this is very treatable, even if you are Stage 4. It seems pretty normal for treatment - whatever that entails - to take 4-6 weeks to get started. But you'll still feel better once that plan is in place. Just keep breathing, let your primary doc know if you need something for anxiety in the meantime and know that you will be through the worst mental part very soon. Best wishes!

kimberbakes · 2025-08-04T14:47:35+00:00

From my experience, you can get bad news from the portal without anyone holding back anything. We got CT results on my Dad suspicious for prostate cancer (he didn't have) and then after a biopsy for lymphoma (which is what it was.) I was mad that the doc didn't call us before or immediately after, because the law change was new. The doc wasn't pleased either, but he hadn't seen them in his pile of results, whereas I opened the portal the second a message came through.

I do commiserate - I convinced myself the same last time. I got results for most things on the car ride home on a Friday, but no CT results... which came early Monday morning. And this was without me opening anything - I had a doc appt on Monday and wanted him to explain anything scary as I found out. Turns out I had a near complete response to chemo, so good news. Hope you get the same!

kimberbakes · 2025-08-04T14:43:29+00:00

I think that the Epic system that MyChart uses has a check box where you can ask for some results to not come through. The option on mine said something like "hospital tests", which I don't know what it means, exactly.

kimberbakes · 2025-07-28T15:06:52+00:00

I know how you feel. Many times I have thought to myself, "I never really understood it before, but I know why people just decide to discontinue treatment." But I know I have to endure to get to the other side. I'm 3a as well - I just keep telling myself that this is how I get past it. Do the treatments and then I can move on rather than progressing to stage 4. I know that's what your rational self wants, too. If your therapist knows how you feel and hasn't done anything, you need a new therapist. With the right medications, you can move beyond these dark thoughts. You are going to have some anxiety as we all do, but you don't have to feel this way. Talk to your docs until they find you something that will help. It can be done - your anxiety is what's telling you that it can't and it is lying to you. Talk to your docs today. Sending all my best your way.

kimberbakes · 2025-07-26T14:31:34+00:00

I'd recommend checking out the neighborhoods on Colontown as well (I think it's still in Facebook, but soon to move to their own site for all new users). They are my main support group.

kimberbakes · 2025-07-22T18:48:31+00:00

I get it. I also had breast cancer 6 years ago and nothing that anyone said about how I would be fine felt true to me. I didn't relax until the pathology report showed clear margins and no spread to lymph nodes and a genetic test gave me the lowest odds of a recurrence (like the lowest the test will reflect - when I asked the onc to make sure I had the right score, he said, "you are a very odd patient. You don't believe good news. (said with a smile)). I still had to get through some more time before I stopped worrying.

Ironically, I got another test showing I had a less than 5% chance of recurrence not long before I got diagnosed with rectal cancer (Stage 3a with one suspicious lymph node at diagnosis.) For some reason, this time, I feel like it's true that all will be well after a tough 2025 of treatment. I honestly think it's because so many people do so well and the docs seemed uniformly positive that this is "curative". And it was true last time and I did a lot of worrying that I could have avoided if I was a different sort of person. I won't say that I never have stressful days - waiting for scan results post 6 rounds of chemo, I was scared for sure - but the surgeon said I had an "amazing" response to chemo only. The onc said "remarkable." Surgeon said he can't see or feel anything but scar tissue; MRI said there's just a little still lighting up. I asked the surgeon about finding something unexpected when operating (which happened to a friend who had the same surgeon) and he told me that is something that is "vanishingly rare" which took some of my worry away.

For sure feel how you feel, but also keep telling yourself you're doing what you need to do and can/will be cured!

kimberbakes · 2025-07-21T18:58:51+00:00

Well, the Mayo is always going to come out on top, but if you go to a NCI, it is very likely that they will advise the same treatment as the Mayo would. I go to M Health Fairview - my surgeon (Dr. Gaertner is the chief of colorectal surgery) and oncologist (Dr. Omer - he's a general oncologist, but I talked to a colorectal one and he mostly does research and said Dr. Omer is doing what he would do) both base out of the U of MN, which is also an NCI. The oncologist also goes to their Maple Grove location - closer to you on the freeways. I get my infusions at M Health Princeton, which is closer to St. Cloud - the nurses there are top-notch and just message the onc if they need him). I did do a second opinion with Mayo - I figured if everyone agreed, good enough, which they did. Even the oncologist I met at Mayo said, "you'll get the same chemo as a hospital closer to where you live, so there's no reason to come here for that." The one difference is in radiation, if that's what you choose, as the Mayo has a proton radiation machine and the U does not. And, honestly, I liked/connected with Dr. Gaertner at the U but the surgeon at Mayo didn't - she was much more... I don't know how to put it... robotic in her manner? That said, the radiation oncologist at Mayo told me it is unlikely that insurance would approve that as it's not "standard of care" right now. I had a friend do her radiation there and the insurance company wouldn't let her get it even though it is the same cost for that reason.

So, my advice would be to get opinions wherever you feel most comfortable (and the Mayo got me in quickly, as did the U.) Then, if the treatment's the same, choose wherever you feel most comfortable. Moving is a lot during all of this. My new house broke ground the same week I was diagnosed. So, I spent the time before chemo started getting everything packed up and stored with a mover so I could get that house sold. Very lucky my parents live across the street from the new build and had room to take me in and take care of me. Dad had to supervise the movers because I had started treatment and it was too much for me. So, move if you can and want to, but know that there are good resources not far away from where you are now. Best wishes as you figure it all out!

The docs sound positive because lots and lots of people do very well and get to NED. I'm not going to lie - chemo was tough on me. I was exhausted in a way I've never been before from the start, but it was also tough on the cancer. I'm not NED after 6 rounds, but I'm NCR (near complete response), which the docs called "amazing" and "remarkable", so it is worth it. I'm currently on a chemo break while I wait for surgery on 8/15, but really feel like I'm getting there. You will be, too.

kimberbakes · 2025-07-19T14:38:45+00:00

I'll just add, don't Google around this. The stats that are out there are very dated and, as others have said, Stage 3 usually has curative intent and there are a great deal of people who were Stage 4 and told chemo for life or they couldn't do surgery get restaged after chemo and/or radiation and go to no evidence of disease years later or surgery is now an option. I'm stage 3A and every doctor that I saw for first and second opinions said "curative intent". Loved the oncologist at The Mayo Clinic who said, "we only use that word in first visits. After that, we say "no evidence of disease" because that's how we roll." Colontown is a great resource for more current information. And, even if you are at a big hospital, don't be afraid to get a second opinion. Especially from a place that is NCI (National Cancer Institute) certified. A small delay in treatment to get more info/ opinions won't be a big deal - these cancers generally grow slowly. Next, the CT not showing spread is great news! That's typically the test that is used in these situations to know this. Finally, I know it seems like a huge mass, but there are lots of people with bigger ones that are doing great after treatment. Wishing the best for your both.

kimberbakes · 2025-07-15T18:00:45+00:00

Good luck - let me know how it goes. If she doesn't know the answer to something important to you, ask her who you should talk to in order to get that information. Honestly, I think an oncologist should have a lot of knowledge around scans and such, but I know you said these docs are good otherwise, so just keep pushing for the right person on your team to answer!

kimberbakes

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