Two months in

lina_sue
lina_sue Member Posts: 4 Member
edited May 2023 in Colorectal Cancer #1

Hi all!

30 yo female with current diagnosis of stage 4 rectal with metastasis on liver as well as bone. Just finished round 3 of 12. I’ve done 5 rounds of radiation on Mets on my hips. Currently on irinotecan, fluorouacil, and oxaliplatin for my chemotherapy. How do you guys cope with everything? I feel like time is moving very slow but also at lightening speed.

-lina

Comments

  • gregover62
    gregover62 Member Posts: 1 *
    #2

    Hello Lina!

    I'm a colorectal cancer survivor for 1 1/2 years so far. I originally had stage 3. It was a 4 inch long tumor in my rectum that had grown through the wall and was just about to the point of spreading. Do you wish to discuss your experience and concerns? I'm not a doctor, just a person willing to talk about our experiences and concerns if you'd like.

    Greg

  • JohnP2
    JohnP2 Member Posts: 7 Member
    #3

    Hi Lina,

    i too am stage IV and have metastasis that spread from transverse colon to liver. I had surgery to remove the part of the colin with the tumor (which was almost completely obstructing). I have yet to start treatment (they wanted to wait at least three weeks after surgery) and my first Oncology appointment is in two days.

    let me ask do you have pain in your liver. I do not comes and goes. My PCP initially thought I had kidney stones. If it were not for a blood clot that developed in my lungs (due to the colon bleeding) I would have gone to the hospital.

    my main issue now is having bowel movements. Each time I eat I feel intense urge to go but cannot. The only time I can go is in the morning, or if I reall squeeze and even then it is a pencil thin size (one or two small ol pieces.).

    has your treatments alleviate any of your symptoms? Thanks

  • chemo22
    chemo22 Member Posts: 5 *
    #4
    https://csn.cancer.org/discussion/comment/1701679#Comment_1701679

    Hi john my husband also recently dx w colon ca stg 4 mets to liver n lungs .. Complete surprise. However md said not candidate for surgery bc mets so we've startd chemo. Keeping our fingers crossed this works. I do know bf our staging md was spk abt sx n did discuss BM issues afterwards said they had tx to help mg the changes n can last 6 mo to 1 yr... I really think u need to bring this iss2 up to md or surgeon right away don't suffer! Plus there could be a blkage or nerve irritation causing it. Goodluck

  • lina_sue
    lina_sue Member Posts: 4 Member
    #5
    https://csn.cancer.org/discussion/comment/1701644#Comment_1701644

    Congrats on 1.5 years! I’m just trying to take things day by day. Some days just feel like I’m in an alternate universe. Like I’m living someone else’s life. I’m about to have my 4th round of chemo this Friday.

  • lina_sue
    lina_sue Member Posts: 4 Member
    #6
    https://csn.cancer.org/discussion/comment/1701679#Comment_1701679

    I had pain on my liver when I was first diagnosed. My cancer was found during a ct scan at the er. I was having abdominal pain during that time.

    I also struggled with barely being able to have any bowel movements and the barely being able to get anything out that you’re experiencing too. I will say that now being on chemo I don’t have the issues with not being able to go. It’s a blessing at a curse though. Unfortunately with chemo, constipation and diarrhea are side effects. A lot of it has to do with what kind of chemo they have you on as well. So hopefully once you start some treatment you’re bowel issues will get better.

    Treatment has alleviated some symptoms but it comes with its own issues. I guess it’s apart of the process.

  • lina_sue
    lina_sue Member Posts: 4 Member
    #7
    https://csn.cancer.org/discussion/comment/1701680#Comment_1701680

    Good point chemo22! Always bring anything and everything up to your doctors! They’re here to help you. I also wasn’t a candidate for surgery due to how severe spread is chemo22! .

  • JohnP2
    JohnP2 Member Posts: 7 Member
    #8

    Thank you for everyone’s comments.

    Lina, we have incredibly similar experiences. I found out I. ER (due to blood clot symptoms) and was suddenly told of all this completely blind-sides “You have Stage IV…”.

    Worse yet..I had no insurance due to missing open enrollment with my company after job change Regardless I was able to get it starting Nov 1 so that is now all taken care of

    I did meet with Oncologist (first visit) and told him about my stomach issues. He kind of played it off as “that’s just due to the surgery” which was open partial colectomy with anastomosis and liver biopsy. He prescribed some pain meds which have had zero affect. I need to press the issue with him as this is beyond “normal” stomach issues. I no longer can sleep until I pass out from exhaustion. Also, the level of pain (constant urge to go) is 100% based on how much I eat. The two nights after thanksgiving were the most torturous nights I could ever imagine in my wildest dreams. Just imagine when you REALLY have to defecate (to where you feel you can no longer hold it)….however you are unable to pass anything. The only time I can really have a BM is when I first wake up, but the SECOND I eat something the urge comes again and doesn’t stop until I sleep/wake up and have a BM.

    Next week I am getting a PET scan and a port put in.

  • JohnP2
    JohnP2 Member Posts: 7 Member
    #9

    One other note: maybe someone can shed light.

    Initially told I have “Mets” colon cancer, and that I had a large obstructing “mass” on my Transverse colon (right side near the liver). They of course removed that part of the colon (and thus the mass) and reattached. So my assumption was the cancer was originated in the Transverse colon and spread from there.

    However in reading my first Oncologist report, it stated malignant neoplasm in the Sigmoid Junction. The sigmoid junction was not mentioned once in my 280+ pages of medical records. So unsure if this was an error in his notes or what. In other words the only places I was told there were palatable masses were in Transverse and on Liver. Am I confused here or wrong to wonder why Sigmoid was not mentioned once )until initial consultation)?

    thanks in advance for your replies.

  • Tigerfan92
    Tigerfan92 Member Posts: 18 Member
    #10
    https://csn.cancer.org/discussion/comment/1701644#Comment_1701644

    Hello gregover62-

    I started out as stage 1 but pathology changed it to stage 3. 6 weeks post op of an LAR with an ileostomy. I am about to start 28 sessions of Xeloda chemo/radiation followed by 8 cycles of chemo . From what I have heard everyone has a different experience with chemo but wondering how bad it can be. I am trying to work (work from home and office some days) through all of it but want to be realistic of how much I can really handle. Please share your experience. Thanks!

  • sgold88
    sgold88 Member Posts: 85 Member
    #11
    https://csn.cancer.org/discussion/325890/two-months-in

    Sorry to hear this but rest assured that there are many people out there and on this forum who live long lives with stage 4 and some either "cured" by way of 5-10+ year NED and even with constant treatment, many (not some but many) live long lives. My wife was dx'd in 2019 at 39 years old, sigmoid tumour, then 2 mets to liver a couple months after that. After a couple operations and a boat load of chemo (folfox) she's been in remission ever since (she had what appeared to be a peritoneal met false positive in early 2022 that "tircked" the radiologist into thinking it was a met, but after surgery it turned out to be benign). Point is she's stage 4 by definition but as many on here do - they play whack-a-mole with what pops up and yes - things move at lightning speed while at a slow pace at times. As each treatment passes, you'll feel a tiny weight off your shoulders as you hopefully move towards putting the worst behind you. Pls keep us updated.

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