Newly diagnosed and looking for support!
Hello everyone, I have been lurking for a few days and have finally decided to post. My name is Kirstin.. I am 47, diagnosed with stage 3b (T3N1M0) CRC on 1/19/23. The week prior, I had been experiencing sudden bloody diarrhea and unusual colicky pain (which was minimized by my PCP and GI for over a week until I insisted on a scan). An abdominal CT on 1/19 found an intussusception caused by a 10cm mass in my transverse colon that required emergency surgery. I had an emergency open transverse colectomy later that day and was hospitalized for a week. Prior to discharge, my surgeon (who was already suspicious of the mass but was confident he "got it all") reported that the pathology showed T3N1M0. 22 lymph nodes were removed, 1 was positive. The margins were clean.
I have been home recovering from surgery since 1/26. At the first surgical follow-up, I was advised that adjuvant chemotherapy was recommended, and a referral was made to our local oncology practice. On my own, I also contacted Roswell Park Cancer Institute (a highly accredited cancer center 2 hours from home) to make sure I had a second opinion set up. Roswell ended up being faster than our local folks, so I met with them first on 2/15. Their recommendation was 3 months of Capox, or 6 months of Folfox - though they leaned towards Capox. They recommended a Mediport with either treatment. I met with my local oncologist yesterday, 2/16. He also recommends 3 months of Capox (but said 6 months of Folfox is an option if that's what I would prefer). He denies I will need a Mediport if I choose Capox. He recommends Capox due to the shorter duration, ease of delivery compared to Folfox, and the reduced likelihood of long-term neuropathy. He offered that I can start with Capox and switch to Folfox if the need arises.
Dilemma #1: I was honestly handling this entire thing VERY well until yesterday's appointment. Now, I am feeling anxious and overwhelmed. Prior to the appointment with my local oncologist, I was leaning towards Folfox because I'd heard it was better tolerated than Capox. My local oncologist denies that Capox side effects are much less well tolerated than Folfox. He made a good argument for Capox being only 3 months vs. 6 months. Now, I don't know what to do.
Like most folks, I am afraid of the crazy potential side effects of chemo. I lead a VERY busy life. I work full-time as an investigator for Child Protective Services, I am in graduate school for my MSW at night, and I have four children at home. It would make sense to get this whole thing over with faster IF I can tolerate the Capox. I am hung up on the question of how much worse is Capox than Folfox? Or are they fairly equally unpleasant? How likely is it that I will be able to carry on about my normal life while I'm doing chemo? My job is very demanding. I am out of work recovering from the surgery until mid-March anyway, but was hoping to at least return to the office (and remain out of the field) after chemo round 1, once I see how it goes.
I'm also stuck on whether or not I should insist on a Mediport if I choose Capox, even though the local oncologist says I wouldn't need one (but can have one if I choose). My veins tend to be garbage, but he also offered the option of a removable picc line (placed new for each infusion and removed when the infusion is done).
As an aside, no matter how lousy it is, NOT completing adjuvant chemo is not an option for me. I have four children (and my husband) counting on me. Even if the % is negligible that the cancer won't recur if I complete adjuvant chemo, I feel very strongly about ensuring every last % is accounted for.
Dilemma #2: It is recommended that adjuvant chemo is started 6-8 weeks post-op. My family has a trip planned to Boston in March (3/22 - 3/26) to attend a large gaming convention (PAX East, if anyone is familiar). It is the one big trip we do as a family, and it is super important to my kids. When I was diagnosed, I already said I will NOT miss this chance to make these memories with my family. The oncologist at Roswell said chemo can wait until the week we return, and she had no issue with that because it falls within the 12 week cut-off. The local oncologist is more insistent that I start chemo in early March (even though I haven't been surgically cleared and won't be until 3/15), but said ultimately it is my decision and that yes, waiting an extra couple weeks is "technically" fine. Now he has me paranoid about waiting. If I start chemo after our trip, it would be at about 9 weeks post-op. He said if I start in early March, the week of our trip would fall on my week off of treatment, and I should feel fairly decent - but no guarantees. I absolutely do NOT want to be sick on this trip. Not to mention I will be at a convention with thousands of other people (masks and vaccines required) - which he said is fine on this type of chemo - but I'm not comfortable with it. I don't know what to do. Now I'm paranoid to wait, but the thought of starting chemo before this very important trip with my family is giving me horrible anxiety.
I apologize for how long this post is, and I appreciate anyone who takes the time to read it all and offer any feedback. I have another interesting twist to this story, but I will make a separate post for that. I am a ball of nerves trying to make these decisions and would like to get back to feeling some sort of confidence that I am going to beat this and carry on with my life.
Comments
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It sounds like you are very busy--so all of these issues are a bit overwhelming.
As a preliminary matter, everyone reacts to chemo differently. But it makes sense to give yourself room and time for your first few weeks to see how you do. If it were me, I would not make any big plans for travel or work during that time. You may be fine. Or maybe not. It is best to have the time to find out.
My diagnosis was similar to yours--a few more lymph nodes involved. I chose "capox," but later dropped the oxaliplatin because I reacted so badly to it. I very much liked the flexibility of the capecitabine, because I could tailor the dosage to my reactions. I hate needles and was willing to do the PICC line, but I only did it once. For me, doing it without a port was very important. You might want to wait on the port a while to see how you do without it--or if you even stick with the oxaliplatin to need it.
The scheduling of the trip is a hard one, you might want to research how important it is to start chemo at a specific time after surgery. I recall that a range was considered okay, but likely the research has changed since then. But if it were me, I would not plan a family trip and start chemo at the same time. How you react is too unpredictable.
Since you are fresh out of surgery, you might also want to take a look at research about cimetidine as a supplement.
Best of luck with all of these difficult issues.
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I have a similar experience. Also diagnosed with stage 3B colon cancer, with cancer in 3 lymph nodes. I had the surgery on Dec. 8th. I met with the oncologist on Dec. 28th. They wanted to begin Folfox chemo the 2nd week in January, but our family (scattered across the country) had planned a "late Christmas" where my aging parents live (mom has cancer, too). I DID NOT want to miss out on seeing my 2 young grandchildren, who live far away. My onclologist said that Folfox is usually well tolerated and that I could do my 1st treatment before going out of state. At first, I thought I just wanted to get it over with and would do that. Then I reconsidered and am SOOO glad that I did. I AM NOT tolerating it well. I have terrible nausea, vomiting, and the anti-nausea meds have not helped much and seem to make me feel even worse with headaches and sleepiness. I have only had 2 sessions and go in tomorrow for my 3rd. The first round, I started feeling better about the 6th day and gradually felt back to normal. This second round I got a high fever after I got the infusion at the center and vomitted several times the first 4 days. I didn't start feeling better until about day 8 this time. I asked my Dr. for Emend for nausea to be given to me at infusion time, thanks to learning about it on this message board! I will get that tomorrow and hope that it helps. I am glad I put off my chemo just 2 weeks. We literally got home the day before I started. I wish my chemo would only be for 3 months. I don't know if I can take this for 6 months! I'll check out your treatment of CAPOX and ask my Doctor about that. I thought I'd be able to work at least part time on chemo (my Doctor said many people do) but I can't imagine how with my experience so far!
As far as your anxiety about your trip, I totally relate. I knew that I'd feel more anxious with the "unknown" if I did chemo before the trip, so that helped my make my decision. Keep us posted on your treatment decisions!
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- Alternative treatments: Doctors, in my experience, are particularly conservative. If a treatment was not in JAMA, supported by a double-blind study and endorsed at their annual meeting, they are not likely to recommend it. From my perspective, one needs to do a personal risk-benefit analysis. Vitamin D is much more accepted now, but a few years ago, doctors would not even test for it. What is the risk of having a healthy vitamin d level? Not much, but there is certainly strong evidence of a benefit. Cimetidine is a relatively mild heartburn medicine. What is the risk of taking it compared to the potential reduction in the risk for a recurrence? All of these are very individual questions. Some take their doctor's recommendations without question. Others see their doctor as a resource, but seek other solutions as well.
- Chemo dosage: From my perspective, chemo is an extremely crude form of treatment, like hitting a nail with a sledge hammer. Everyone reacts differently. I modified my dosage of capecitabine based on how much I could endure. I do not think I ever got past about half of the initially recommended dosage. That was the best I could do. Also, recognize that initial doses of oxaliplatin can be limited, and then increased to what you can bear. I sure wish my first dose had been at 50%, but the doctor only agreed to cut it to 80%. That was still enough to convince me to not do any more. There are abundant articles about dosage and efficacy. You might want to spend some time on pubmed doing your own research. These are tough decisions that affect your chances for a healthy future. I would often tell myself, "this is a matter of life or death," in researching issues and dealing with the health care system. Best of luck to you in these difficult matters.
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Hello Kirstin,
I also have Stage 3b. I had part of my large intestine and colon removed. I also got a temporary ileostomy. I am 45 and I have 2 kids and wife. At the time of surgery, we were a single income family, so working was a must for me and so was treatment. My oncologist gave me the option of capox or folfox, but he recommended Capox because he said it is easier to keep working through. I had one bad episode during the treatment that made me miss work for a week, but other than that I am ok. I have some neuropathy in my hands and feet, but it is not terrible and my oncologist is confident that it will go away.
My oncologist waited 8 weeks after surgery to do chemo, but I think they said it should be started after 8-10 weeks post surgery. I think that is kind of standard and your one doctor is saying this, so you should be ok for the trip. Regarding fear of getting sick, my white blood cells and lymphocytes never dropped below normal during chemo. I never got sick.
Personally, if the trip is that important to you and your family, I would go and I would not start chemo. Your inside the timeframe that they don't recommend starting chemo anyway. One of the worst parts of the chemo for me was the cold sensitivity. It sucks. My throat hurts, my nose hurts, even my facial hair hurt. Boston can get pretty cold. I also had to warm everything that I drank. You don't want to be dealing with that on a trip.
I got a mediport and I am glad that I did. Its saved a lot of pricks and my veins can be problematic to get into. Also, when I had the bad episode during chemo, I got very dehydrated and they needed to set up daily IV infusions. That lasted for months and the port was a huge help.
I am sorry that you are going through all this, but things will work out for you. Good luck with everything!
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Thank you so much for sharing your experience; so helpful to me! If you don't mind me asking, where are you at in your journey, and how are you doing? You mentioned being 3B - how many lymph nodes were positive?
I had my "chemo teach" today. I brought a lot of questions based on things I've read here and elsewhere, and the NP said I had lots of really great questions. I told her I feel like I'm trying to captain a ship I have no business being captain of, but it's in my nature. She said I'm advocating for myself and that's great. It was nice that she was supportive and not bothered by all the questions, especially when some of my questions led to me asking for things that weren't "in the plan" (like prophylactic IV fluids during my infusions, which they were totally fine with). She recommended I go with either a removable picc or a mediport. I am leaning towards a mediport.
I did tell them today that I will start chemo after Boston. While in Boston, I am seeing a GI Oncologist at Dana-Farber, so it makes sense to start after the trip anyhow (which will be about 9.5 weeks post-op).
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Hello Kirstin,
It sounds like you are really smart for doing all the research. You may want to look into cold gloves/socks for your infusions. I read about in here and on youtube. My oncologist said it can't hurt. I do have some neuropathy, so its hard for me to say if it worked, but for the cost of it, I would certainly do it again. You can grab them off amazon.
I am almost done treatment. I was diagnosed as Stage 1 in June 2022. My CT Scans showed 2 swollen lymph nodes, but they were labeled as benign. My treatment was supposed to be surgery only.
In early July they did the surgery and the 2 lymph nodes came back as cancerous. They were wrong with their initial benign diagnosis.
They started me on Capox Chemo in early September. I finished that in Late December. Now I am doing oral chemo (capecitabine) and Proton Therapy. They recommended Proton Therapy instead of traditional radiation for me because I am on the younger side and Proton therapy has less of a chance for secondary cancers. I will be finished with the proton therapy next Tuesday and I get to finally ring the bell! I am looking forward to it.
The fight against cancer is not fun. I've certainly spent my fair share of time throwing up and hating the process, but it is manageable and you will get through it. We are both parents, we don't have much of a choice. My advice is to keep your medical care team in the loop. They will make adjustments to help you. My oncologist told me on my initial visit that modifications are made all the time and I would be the exception to the rule if I did NOT need a modification.
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I did read about cold gloves and socks - sounds terrible. lol! I hate being cold SO much. How bad are they to use?
What kind of anti-nausea treatment did you have for chemo? She said 2 drugs will be given with the infusion for prophylactic nausea treatment, one lasts 3 days and the other 5. She will also give me Zofran for at home.
Did you find more side effects from the oxaliplatin infusion or from the xeloda pills? My treatment will be the infusion on day one and 14 days of capecitabine (xeloda) pills on repeat x3 months. No other treatments called for at this time.
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I have read about the cold gloves and socks - sounds awful. I hate being cold. lol! How bad are they to use?
What has your prophylactic anti-nausea regimen been like? She said I'll get 2 meds with my infusion for nausea, one will last 3 days and the other 5. She will also give me Zofran for home.
Have you found more side effects from the oxaliplatin infusion or from the capecitabine pills? My treatment will be oxaliplatin infusions on day one followed by 14 days of capecitabine pills, one week off, lather rinse repeat x3 months. No further treatment is recommended at this time.
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Ladienyte, I didn't get to have my 3rd round! My white blood cell count was too low. It's been almost a week and now my next infusion is this Wednesday, with a visit with the Doctor right before. I'm disappointed that my treatment will take longer now, but it's been nice to have an extra week of feeling better.
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Not gonna lie, the cold gloves/socks were very uncomfortable!
They gave me anti nausea with the infusion. I’m not sure what they used, but it worked pretty good. They gave me compazene and zofran to take at home. I took them each 3 times a day for a couple of days after the infusion, then I would drop back to twice a day for the 14 days that I took the Capecitabine. My treatment cycle was like yours. I had 6 infusion sessions, each one was followed by 14 days of oral Capecitabine and one week off.
I found the oxilaplatin to be worse than the Capecitabine, but I do want to stress that I was able to live an ok life while being on these once they made some modifications. I started at 3300 mg/day of the Capecitabine, but during the 4th session they reduced that to 2000 per day. They also cutback my ocilaplating by 1/3 for the last session. Some people react different, but I mostly felt ok, all things considered and hopefully will to!
Im not much of a cheerleader, but you got this. You will get by, just keep on trucking!
that’s also awesome that you are avoiding radiation!
also, don’t be afraid to tell you oncologist if you are getting any bad side effects. I found my oncologist’s Twitter page and he had an article on there that said there was basically zero down side to completely discontinuing oxilaplatin 1/2 way through your treatment. Of course these doctors won’t admit that at first because they are all so focused on following the “standard of care”, but they know that especially if your getting negative side effects, the extra treatment is not worth it. I’ll try to find that article and send it over here.
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Ladienyte: Oxaliplatin, for most everyone, is the worst. The board is pretty much inactive now, but in the past, there were countless anecdotes of people tossing cold groceries across the store. I went shopping after my first infusion, tried to pick up an easy frozen dinner, and luckily when I tossed it, it went in the basket, instead of across the store. Perhaps there is a bit of humor in the horrible. But, beware the cold, and the "first bite," when drinking cold liquids. Also, maybe try a heavy cream like Eucerin (I use the Walmart knockoff) on your hands and feet, even before you start chemo. Best of luck and here's hoping for an easy course of treatment. Let us know how it goes. Others can learn from your experiences.
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Thank you! I just bought myself some Udderly Smooth cream w/20% Urea! The reviews are good for hand/foot from chemo. I plan to start it when I get it and use it through chemo. In your estimation is it the hand/foot and the cold sensitivity that makes the oxaliplatin the worse of the two drugs? Or for other reasons?
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I looked at the study. My take on it is that it essentially supports what my Onc said about CapeOx - only needed for 3 months, not 6 like the Folfox. I don't see where it supports less than 3 months for CapeOx, though. My understanding is that early on CapeOx was also 6 months until studies proved that it has the same efficacy at 3 months, so most go by the 3 month regimen now. My plan is to stick it out for the 3 months.. I really, really would not want to have to stop before that..
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I have read about the cold gloves and socks - sounds awful. I hate being cold. lol! How bad are they to use?
What has your prophylactic anti-nausea regimen been like? She said I'll get 2 meds with my infusion for nausea, one will last 3 days and the other 5. She will also give me Zofran for home.
Have you found more side effects from the oxaliplatin infusion or from the capecitabine pills? My treatment will be oxaliplatin infusions on day one followed by 14 days of capecitabine pills, one week off, lather rinse repeat x3 months. No further treatment is recommended at this time.
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Hi Kirsten, I am also 47 and was diagnosed on 12/11/22 (stage iv as it’s spread to lungs and liver) I also had an emergency transverse colectomy and they inserted a port at the same time. I am very thankful for that as i have trash veins. It has made getting chemo treatment much easier than I can imagine without it. I am on the folfox treatment and my side effects haven’t been too bad at all. Thanks be to God! The worst of it is the neuropathy. Not being able to touch cold food items while doing my best to be as much of a normal mom and wife is hard. But if that’s the worst if it and this treatment works it will be well worth it.
Anyway.. just wanted to let you know you’re not alone and I’m thankful for your post to know that I’m not either.
Take care & God Bless
~Sara~
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Ladienyte: Other reasons. But hopefully you will do much better. There is no reason to build fear and apprehension. Maybe get the manufacturer's descriptions of possible side effects and be aware of what can happen, and since you have decided to go forward, hope for the best. Best of luck to you.
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