Recently diagnosed at 28 years old

lagorski
lagorski Member Posts: 1 *
edited August 2022 in Colorectal Cancer #1

Hi everyone, I’m new here… I am currently 29 (diagnosed at 28) and was diagnosed with stage II small bowel cancer. I had the obstruction removed in May and currently on the FOLFOX regimen. My hair is thinning out… I never heard of neuropathy, until I experienced it… metal taste…. I’ve fallen into a depression and not sure how to navigate this new life. Any other 20-somethings out there experiencing this? Does anyone have any advice of what helped them (physically and mentally) through their treatments?

Comments

  • Chris2328
    Chris2328 Member Posts: 19 Member

    I am so sorry about your diagnosis. I am not young, but currently in treatment on the Folfox regimen. This treatment is rigorous. My experience has been that I have 5-6 days after treatment with some nausea (fairly easily reduced with anti-nausea meds). The biggest effect I have is extreme fatigue, so I sleep many hours during those days. I get up to eat, walk my dogs, and speak with friends/family on the phone. I then have about a week of feeling pretty good until the next treatment. Which I dread, as much as I try to maintain positivity. Light exercise lifts my spirits, and helps me to sleep deeply through the worst of it.

    Use plastic utensils. That helps some. Drink as much water as you can. Ask your oncologist to refer you to counseling. I see a practice that is staffed with Licensed Independent Social Workers, and while they can't really solve my problems, it is good to talk to someone outside my social circle, and helps me to spend time with loved ones with less talk about my cancer and side effects. It helps to just enjoy their company! I also listen to an American Buddhist, Tara Brach who has some really lovely Youtube videos on acceptance.

    I hope that at your stage of cancer that there is reason to believe that you can beat this. You will learn a lot about your strengths. None of us want lessons delivered in this stark way, but trust that you are strong enough to move through this. This is a good place to connect with people who are in your shoes. Sending you healing thoughts.

    Chris

  • fordmicah
    fordmicah Member Posts: 14 Member

    Hello,

    I am not in your age group and I am about to start CAPOX, so sorry I am not much help, but I sincerely hope everything works out for you.

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,381 Member

    As a preliminary matter, one might guess that your chances for a long and healthy life are good. Chemo is hell, but in your circumstances, temporary. For me, exercise helped enormously. Post-surgery, I was only able to walk, but I did it like a job, every day, for a long distance. One of my sayings is "exercise helps with everything." Marking-off days on the calendar helped, as well as keeping a journal. Meditation helped me as well. Best of luck with your challenges.

  • devereaux2509
    devereaux2509 Member Posts: 8 Member

    Sorry you’re going through this. I was diagnosed with rectal cancer stage 3, and 38 and now I’m 39. Im on folfox as well, and my hair is thinning pretty bad. Not coming out in patches yet, but every time I touch it, Several strands come out. I just washed it and after i combed it after the shower the floor looked like end of day at a great clips. I sobbed the whole time. Im a week out from my third cycle of six. Im terrified of losing my hair, and feel bamboozled because everyone has said that you won’t lose your hair on this and that, frankly, has been the only thing getting me through. The notion that I won’t look sick. Now here I am middle of the night looking at wigs. that neuropathy is no joke either.

    my advice would be to stay on top of your nausea meds day of and about a week out. Helps alot. If you’re not already, get a liter of fluids when they take you off the pump. You’re still gonna be exhausted but you feel less ****. Cry as much as you want. Sure some people have it worse, but what you’re going through is terrible too. Let friends and family help. they don’t know what to do, but want to help. Give them a task. Be it driving you to chemo, or bringing by your favorite comfort food. Get on tik tok, there’s community out there, lot of folks our ages.

  • SnapDragon2
    SnapDragon2 Member Posts: 720 Member

    Chemo kills cancer cells and healthy cells. Boost your immune system to keep healthy cells healthy.

    I took IVC and phenols/flavanoids. I had no hair loss.

    Also use organic shampoo/conditioner.

  • devereaux2509
    devereaux2509 Member Posts: 8 Member

    Do you get those from your oncologist? Or OTC? I’ll definitely ask. Is there a shampoo brand you’ve used and recommend?

  • SnapDragon2
    SnapDragon2 Member Posts: 720 Member

    I went to a private doctor for IVC after tons of research on it thru orthomolecular.org many decades of reaearch and studies plus other peoples experiences here on this site and colon talk forum. I have a naturopath that helps me with immune system based on research for half of my protocol and bloodwork at the molecular level for other cancer pathway blocking. I also have an intergrative onc who is an out of the box oncologist based on the latest research about colon cancer from around the world. I do not have a conventual oncologist. I fired him :)

    Oncologist from what I hear are predictable in discouraging anthing but chemo. Not even recognizing how important vitamin D is the thousands of healthy cells.

    As for shampoo I make my own with Castilles unscented liquid soap as the base and add things like tea tree oil, castor oil, ect based on what I feel my hair and scalp need at that time. For conditioner it is usually apple cider vinegar as the base with vitamin E and things and just like the shampoo the recipe varies depending on what my hair does, ha.

  • CharlieGtx
    CharlieGtx Member Posts: 7 Member

    As someone that got diagnosed at 50, I felt this is so unfair, I am too young, I don't even get to take my retirement yet. For you at 29, that is Just ****!  

    But now is the time to get over how unfair it is and change your perspective, this is temporary! 

    You will get over this, you just have to deal with a year of crappy stuff, then you will be back to 100%

    I am on my 4th round of Folfox. I have been lucky to have zero nausea, thank goodness. It will make you exhausted, I get tired just walking to the kitchen. I also got the rash real bad and this round the mouth sores are horrible. My dr. also said "hair thinning but not much" But I lose a huge clump every morning. I never got the metal taste, but the cold sensitivity means I can't drink anything cold. We all get different versions of the side effects. Remember, all these things are temporary! Your hair will grow back after you stop chemo. Some people suggest minoxidil to speed up growing back. As others said, exercise a little when you can, talk walks outside if you can and keep in contact with friends, don't shut yourself out.