Considering Refusing 2nd Round of Chemo

kateril
kateril Member Posts: 19 Member
edited May 2022 in Anal Cancer #1

Well, I'm at the end of week 2 of Nigro Protocol, and mucositis has really set in. In the 8 days I've had it, I've lost 6 lbs. It's getting pretty unbearable. Holding a mouthful of lidocaine gel for several minutes and then spitting it out allows me just enough time to choke down some broth, protein shake, creamed potato, pudding, etc. along with some water. Otherwise, forget it. No rinse I've tried has made a difference, and the pain, except for the brief and minimal relief from the lidocaine, is constant. I have a reaction to opioid pain meds, and can't take them. The only thing I have is Tylenol. My team seems pretty nonchalant about it, saying oh, yeah, chemo mouth, you may have it for a while. Just try to tough it out, and not lose any more weight. What? I'm seriously considering refusing the 2nd round of chemo coming in 2 weeks, and requesting that I just complete the scheduled radiation.

Comments

  • eihtak
    eihtak Member Posts: 1,470 Member

    kateril, I am so sorry you are suffering. It’s been some time since I was initially treated for anal cancer (first dx in 2011 but a few hiccups in the years after requiring treatment of sorts) I too suffered miserably with mouth sores and did much the same. I had a prescription for what they called “magic mouthwash” but basically Maalox with lidocaine and something else. I did as you…rinse mouth just long enough to eat or drink small amounts. I did find that milk shakes went down well and sometimes mixed a banana or Greek yogurt in to add some nutrition. I remember once the radiologist saying “geez can you get any thinner” I felt so down that day…This is not an easy treatment to say the least and on top of all else the radiation burns become quite unbearable for many as the cumulative effects take hold, but please try to stick it all out. The treatment works hand in hand and the radiation is more effective if it is given along with the chemo schedule. In comparison to many other cancer treatments, while anal cancer can seem brutal, it is short in duration in regard to others. Once done, the healing comes quickly for most.

    Im sorry you can not tolerate an opioid pain reliever. I did take a scheduled dose of OxyContin for a while and found at least some relief. Could you alternate Tylenol with Motrin for a little extra relief? I know there’s a pain relief protocol like that but not sure on timing and dosage.

    I wish your medical team made you feel better understood, telling you to tough it out is not helpful yet I assume as I said, they want your treatment to be successful and know you need to keep going for that to happen. Some just have a softer, kinder, and more empathetic way with words than others I suppose.

    Well anyhow, I’ll be thinking of you and rooting for better days ahead. If I think of anything else that may help I’ll be sure to let you know. Hope you have a restful weekend.

    katheryn

  • kateril
    kateril Member Posts: 19 Member

    Hi, katheryn. Thank you. I came here last night to vent, so tired from pain and frustrated from smiling through gritted teeth all week and giving thumbs up to everyone. It hurts too much to talk anyway, so it was convenient that I could come here and type to whine, hahaha

    Yeah, trying not to think about the pain that's going to kick in at the other end as the effects of radiation accumulate. The IBS gut pain ripping through me with diarrhea is actually better now with Imodium and a low dose of Ativan. GI doc prescribed some Bentyl for IBS, but it made me too loopy and wretched. Can't take NSAIDS, either, reaction to them as well.

    I'm wondering about bourbon, though. I haven't had any since starting treatment, of course, but a bourbon and water in the evening has always helped when the arthritis in my hips flares up. How much worse could it be for my liver than all the Tylenol? I'm being facetious here (I think), but hitting the bourbon while riding this out sounds lovely right now hahaha!

    Thank you again for your encouragement and reassurances.

  • eihtak
    eihtak Member Posts: 1,470 Member

    Hi,

    A big part of this forum is providing a safe place to vent so glad you found us! Even our best support people, as well meaning as they may be, just can not relate from our perspective unless they’ve been there but (sadly) the folks here know all too well.

    On the bourbon, joking or not, it’s my understanding that the biggest drug interaction with this treatment and alcohol is actually it’s mix with some anti-nausea meds like Zofran. If you can avoid that, then by all means, within reason sit back and relax and toast yourself to making it through another day! (My opinion anyhow)

    Be well…

    katheryn

  • Bella_G
    Bella_G Member Posts: 30 Member

    I hope you are doing better as it has been a couple of months since this post.

    I really turned a corner after 2 months from finishing treatment.

  • ginatom
    ginatom Member Posts: 44 Member

    Hi - gosh I hope you are doing better. I hope you can come on and let us know. I just came across your post. I had the same thing - just AWFUL AWFUL AWFUL mouth sores. And allergic to morphine apparently. Vicodin did help. One thing I did that was DUMB was use some liquid aspiring product. It did work, but I think caused other problems, so it's important to stay away from that. I wound up in isolation in the hospital for a week due to pancytopenia, and they decided to decrease the chemo dosage on the second go-round. Anyway, long story short - I'm still alive and it's five years later. Doing pretty well, though I do have some radiation and/or chemo side effects. Urgency is the biggest one, and since I have a rectovaginal fistula, that means fecal incontinence sometimes (since the fistula has no sphincter). Also numbness in both feet. But I hope you got through it and got to NED. BTW, it did take at least 2 months before I felt anything like human after the end of treatment. Then the improvements came much faster. Good luck to you! Jeana

  • cbokay
    cbokay Member Posts: 21 Member

    I'm so sorry you are suffering with the treatment process for anal cancer. We all seem to handle it differently and none of it is any fun. I commend you for getting through this with Tylenol as a pain reliever. (Oh, my) I gladly accepted the morphine they gave me.

    In short, I am 8-1/2 years NED from anal cancer. I endured 6 weeks of radiation (5 days a week) and 2 weeks of chemo, administered through a pic line. I experienced the dry, dry mouth and also the painful sores about the skin near the area of the anal opening.

    It's been a few years since I treated those two concerns but I did take care of it. And here's how (per google search).

    NOTE: I USED BOTH AND THEY WORKED

    DRY MOUTH: Try making a mouthwash by dissolving bicarbonate of soda and salt in 1 cup of warm water. While your mouth is very sensitive during treatment, use 1/4 tsp of each ingredient. After treatment is over, you can increase this to 1/2 tsp. Swish it around your mouth, spit it out and then rinse your mouth with plain water.

    PAINFUL SORES: Patients with severe burns or burns over a large area of the body must be treated in a hospital. Silver sulfadiazine is an antibiotic. It works by killing the bacteria or preventing its growth. [It cleared up my open sores in two days