Just diagnosed - age 42

Skylogan10
Skylogan10 Member Posts: 2 Member
edited November 2022 in Colorectal Cancer #1

Hi everyone, my name is Fraser. I was diagnosed with colon cancer last week after going to emergency because of severe stomach cramps and vomiting. It turns out that my tumour was fully blocking my colon. I had a right hemicolectomy the next day which sounds like it went well. The surgeon said the lymph nodes (which were swollen in the cat scan) didn’t feel hard and that there was no visible signs of spread to my liver etc. I’m not sure how many lymph nodes were removed but it sounded like it was less than they originally suggested. I would have preferred to be more aggressive but I’m taking it as a good sign that they didn’t feel the need to go further. Anyway, I’m hopeful the cancer is contained in my colon but It sounds like there is still a high likelihood that there are microscopic cancer cells in my lymph nodes so they think I’m either stage 2 or 3. I have a cat scan for my chest coming up too that hopefully will be clean. Apparently my CEA number is low and in normal range but I don’t really know what that means.

The first few days after surgery were incredibly painful but I am feeling much better today and am now trying to learn more about what I’m facing in the coming months. I have a follow up in mid-November when I’ll learn the staging and chemo plan, but I’m anxious to learn more about the chemo treatments. The surgeon mentioned that chemo will last 6 months and some of it may be done through pills and there could be some sort of take home chemo… which I’m curious to learn about.

My wife had stage 3 uterine cancer 7 years ago and so I know what to expect to a degree. But when she had hers done, she went into the hospital for an IV drip and then came home and was really sick for a few days and then felt better for a couple weeks before going in to do it again. Is colon cancer treatment similar? I’m not sure what to expect if it’s being done through pills or at-home chemo. Is this normal? What have your experiences been with chemo for stage 2/3 colon cancer?

Any insight people have is greatly appreciated. I have a 3 year old son and an 18 month old daughter and it breaks my heart that I can’t play with them normally after surgery. So I really want to understand what the next 6 months might be like so I can wrap my head around it and have my family ready.

ive read quite a few stories on here and so I just also want to thank people for posting about their experience. As someone encountering it for the first time, it’s really helpful to read other peoples stories.

For those curious, I’ll be undergoing treatment at Sunnybrook Hospital in Toronto which from what I can tell is probably the best hospital for colon cancer in Canada…but I welcome any insight people may have about Sunnybrook if there is anyone on here that’s been through treatment there.

thanks and much love to all of you that are going through this personally or with a loved one. My wife beat a very aggressive late stage cancer and so I know there can be much better days ahead. Cheers, Fraser

Comments

  • BoulderSteve
    BoulderSteve Member Posts: 16 Member
    #2

    As you will find out, everyone's treatment plan is different, but they sometimes share common pieces.

    You asked about what Chemo was like so I'll pass along my experience (I was 51 when diagnosed). To answer your question about IV versus pills, I experienced both. I did 8 rounds of IV chemo. Each round was two weeks so it took around four months to complete. Each round consisted of a blood-testing appointment prior to the chemo day to make sure my body could handle the next round. Then the following day, it was a few hours in the recliner with multiple bags hooked up through my port. I remember having Oxaliplatin in one bag, steroids in one bag and anti-nausea in one bag. I don't recall the other bag I had during the in-clinic portion of IV chemo. At the end of the clinic portion, they hooked up a portable pump with the 5FU bag and that was administered over the course of the next two days or so. One nice side-effect was that the steroid bag made my knee joints feel 20 years younger!

    I didn't feel good at all with the chemo. My family commented to me that I was pretty much a zombie during the portable pump days. I recall looking at my phone to check the time and being astonished to find out that what felt like five minutes to me turned into five hours passing for everyone else. All my brain functions slowed down noticeably. Time to accomplish mental tasks more than doubled. Other folks here refer to this process as "chemo brain". The good news is that it is temporary. As I went through the rest of the two weeks of the cycle, the fog would lift and I would start to feel normal again.. just in time for the next round to start! There are tons of side effects to the chemo and you'll find plenty of information online. I personally experienced the extreme sensitivity to cold (touching or eating/drinking) as well as neuropathy. I'm about a year and a half past the chemo treatments and everything has returned to normal except for residual neuropathy in my feet. Each two week chemo cycle seemed to get progressively worse. The first two or three cycles I thought that I would have no problems handling everything. By the seventh cycle or so, I wasn't able to safely drive or accomplish other tasks that were easily done even a month earlier.

    After I finished the IV chemo portion of my treatment, I did five weeks of radiation and I got to experience the pill form (Xeloda prescription) of Chemo during that. It ended up having different side effects in my case - rashes/blistering and sensitivity on my hands and feet. Since it happened right after my IV chemo, I'm not sure if some of my symptoms were residual from the IV (FOLFOX) treatment or if they were from the Xeloda. I don't recall the Xeloda affecting my brain functions as much as the FOLFOX did. My oncologist mentioned that the chemo during radiation could be either Xeloda pills or a continued 5FU IV pump. In all the years he had been practicing, he only had one patient opt for the portable pump as chemo during radiation.

    I continued my job as a software developer throughout the process. Covid's work-from-home mandates gave me the flexibility to attend the many appointments. I scheduled my clinic days for early morning on Thursdays. I was done with the IV stuff by lunchtime and then I took the rest of Thursday and the following Friday off every round. The portable pump was usually finished up mid Saturday and then I would start to get my brain functionality back by Monday morning so I could work again. I wasn't ideal, but it kept me in a routine and prevented me from dwelling on how bad my situation was.

    I wish you luck. It is going to be tough on your family and you will need help through the process. Having small children is going to make things immensely difficult for your wife. I have multiple children, but my youngest was in sixth grade when I was diagnosed so things were probably easier to manage than what you will be going through. See if you can start to assemble a support group around your family to help out before things get crazy.

  • cgsagrillo
    cgsagrillo Member Posts: 8 Member
    #3

    My husband had a similar diagnosis to yours (he was 40 years old at the time), but in his case, he had been having symptoms for years which he blamed on his hemorrhoids. Ultimately, he had unbearable cramps and diarrhea, and arrived at the ER with his hemoglobin levels below 4 (he needed 4 blood transfusion bags). He had an emergency colostomy bag placed to avoid additional bleeding, and his treatment plan consisted of 25 sessions of radiotherapy with concomitant Xeloda + 4 cycles of Folfoxiri and now he’ll be having a robotic APR in 2 weeks!

    Luckily, the treatments were a breeze to him (at least compared to what we were expecting). He had zero side effects from radiotherapy, and very little nausea or neuropathy from either chemo (in fact, he gained all 50lbs he had lost back!). Though he felt a little “off” at times, he said it quickly went away in a few days. So sometimes, for some people, treatments are not as bad - and I hope you’re one of the lucky ones like him. God willing he can go through surgery just as smoothly!

    His tumor was 20cm long and is currently 2cm only, so he responded to treatment really well. He was originally thought to have mets in his liver, but they were later discovered to be benign hemangiomas.

    I hope you can make a full recovery and see your children graduate from College!

  • Real Tar Heel
    Real Tar Heel Member Posts: 307 Member
    #4

    Hi

    I think you should wait for scan results as they will be the best barometer of where you are and what may lie ahead. I was diagnosed almost 4 years ago. About a month after my successful surgery they found another tumor and I've been stage IV since. That said, I dropped my oldest off at college this summer! You will have the opportunity to see your kids be amazing.

    I've been one of those who haven't had horrible side effects except for lingering problems from Oxyplatin during the first round. The drug I'm currently on causes significant fatigue but I think that is something that most people experience to a greater or lesser degree.

    As you progress through treatment and learn more on your own and consult with your physicians, you'll be better informed to make your decisions with greater confidence. Hopefully, you won't need any of it. Good luck.

  • devereaux2509
    devereaux2509 Member Posts: 8 Member
    edited November 2022 #5

    I commend you for all this research! Everyone has a very different experience, but there's some commonalities in each, and I wish I would've had this kind of info when I started. It helps knowing what might happen.

    Stage 3 Rectal CA.

    Radiation - I had 35 treatments of radiation concurrent with an oral chemo, Xeloda. it was a breeze. The most painful part was the hour drive there and hour drive back Monday through Friday with gas being $5.00 a gallon. As a female I had some different side effects after, than you'll have. But any side effects tend to get worse one week to two weeks after radiation. It was explained to me like my body has gotten used to the treatment, and now it's gone and it was going to react. Some folks had what they call hand/foot. I was cautioned to use Eucerin Advanced Repair twice a day, and I did, and I believe it helped stave that off. I didn't have any burns, or anything like that. Some nausea in the beginning, but nothing I couldn't work through. No hair loss. I do have three permanent tattoo's, just dots that helped line me up when I was on the table. It was quick, less than 5 minutes every treatment, just like getting an xray. You don't feel anything, don't smell anything, nothing like that.

    Port Placement - Conscious sedation, I felt like I had 8 shots of patron, and apparently asked everyone in the operating theater if they pooped with their pants off completely or just down. Didn't hurt, just pressure, and felt some tugging. The worst part was the bandage that unnecessarily went halfway up my neck.

    Chemo - I was lucky and only have had to do 6 cycles. Actual infusion day, easy peasy. They did pre-meds, very similar to your wife, I'm sure. Antinausea meds, steroids, and more antinausea meds. Then the real stuff begins. The oxaliplatin (part of Folfox, the more common chemo used for colon cancer) that is the one that causes the most trouble. It causes cold sensitivity (Have room temp water/soda/drink of choice ready to go for several days after treatment), leg cramping, neuropathy. You can touch cold things, but it will feel like a very intense version of a limb falling asleep. Swallowing cold things, got harder with each treatment. Felt like swallowing glass. Embrace hot tea. there's more componets of folfox, but the other baddie is 5fu. Appropriately named. For me, they did a slow bolus into my port, versus a drip. That one didn't make me sick per se, but i noticeably changed color. Felt like general crap. That's the one that you go home with on an IV pump for 48 hours. It's a pain in the **** schlepping around that pump, i ended up using a drawstring back pack around the house for it. Hot flashes at night. Anxiety. After 48 hours, I would go back, and they would disconnect, and definitely ask for fluids if they don't offer it. It makes a world of difference. Immediate side effects: I would be a potato all weekend. I would sleep from late friday night, (my disconnect day) into saturday afternoon. Nap pretty much until Sunday. Monday, I would go back to work. I wouldn't be performing at my best, but by Tuesday, I would be okay. It hurt to cry. Felt like I was being stabbed between my eye balls. Unfortunately for a girl who loves sappy movies and is a pretty emotional person. Gradual side effects: Hair thinning. Started after my second treatment. It's more common of a side effect than they say. I'm still losing hair even though my last treatment was October 5th. Leg cramps got worse as treatments went on. Akin to a charlie horse type feeling. My dexterity isn't what it used to be. I actually gained weight with treatment, despite not eating a whole lot. Another possible side effect they don't advertise.

    My next step is surgery next week, but you got that one out of the way!

    My advice, if you do end up doing chemo, take your nausea meds proactively, drink all the fluids you can tolerate. Keep active as you can. When your family and friends offer you help, take it. Nap when your body tells you to nap.


    Edited to add: I'm a 39 year old female, in Ohio, and I managed to work the whole time. I'm a social worker in a nursing home. I worked from home when I was on my pump. More so to avoid questions from coworkers and patients, as I was trying to keep my diagnosis and treatment under wraps. I only had to call off one day during all the treatments. And that was for an emotional breakdown (when my hair started to fall out) not due to being physically sick. If you're tik-tok savvy, there is a whole community on there as well, people who have been through all variations of treatment. Particularly Eric, user name Easy E. He's been through all kinds of chemo, radiation, surgeries, and is so open and a wealth of information. I'm sure you experienced it with your wife, but while Cancer is a terrible club to have to join, you will meet some of the best people.

  • Skylogan10
    Skylogan10 Member Posts: 2 Member
    #6

    Thank you all for your replies! It has been really helpful to read about your experiences. I received my pathology yesterday which says T4N0 which I understand is stage 2B. So the cancer was in the peritoneum but not in my lymph nodes which was good news. The tumour was 10.5cm which nearly fully blocked my colon. I have my first appointment with an oncologist on Monday and will learn about the chemo regimen. My sister’s friend is an oncologist and said they’d likely offer me FOLFOX or CAPOX. The FOLFOX sounds worse from the perspective of having to wear a chemo pump for two days each cycle so I’m hoping for CAPOX but I guess I’ll find out Monday. My surgeon said I’d be in chemo for 6 months so I’m mentally preparing for 12 rounds of FOLFOX.

    As for my recovery from surgery, the first few days were painful. Especially the first bowl movement, but I was able to walk within hours of surgery and the pain subsided much faster than I expected. I slept a lot for about 10 days but have slowly regained energy and feel great now. There is still some mild discomfort around the main incision but nothing that interferes in my day. I’m now just focused on trying to get my hemoglobin number up for the start of chemo.

    Thanks again for taking the time to reply to my post. I appreciate you all very much. :)

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