Post Treatment side effects

Brooklyn_bottom
Brooklyn_bottom Member Posts: 5
edited September 2022 in Anal Cancer #1

As I have mentioned in the past, I was diagnosed with squamous cell anal cancer in December. I started treatment Dec. 27,  flourfouracil and mitomycin with 7 weeks radiation.

Post-treatment Pet and MRI show NED and two months after treatment I was feeling pretty good. But now I'm getting a whole new set of issues that may or may not be treatment-related side-effects, including:

Severe Lower back pain

Swollen ankles

Peripheral Neuropathy on my left calf

Chronic Indigestion

And a stomach so noisy, its gurgles can be heard across the table in a noisy restaurant.

This is all on top of the slowly healing crater on my can.

 

I have spoken to my doctor about all of this and, all in all, I feel pretty lucky so far, none of these side effects are debilitating. But I was wondering if the hive-mind here might have an idea of other "exciting" side effects I can look forward to that show-up months or years after treatment?

Thanks.

-BB

Comments

  • mp327
    mp327 Member Posts: 4,440 Member
    #2
    Brooklyn_bottom

    Sorry to hear you are having the above-mentioned side effects post-treatment, but glad that your scans show NED.  I am almost 10 years out of treatment and I have admittedly forgotten a lot about all of the things I dealt with after treatment ended.  But I do know that it took about 2 years before I felt normal, albeit a new normal.  Your body may need some time to recover from the damage done by the treatment, as mine did.  I hope things will improve soon for you.  If not, I would go back to the doctor.  I wish you the best as you continue your recovery.

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    #3
    Been there.

    Brooklyn_Bottom - Aside from peripheral neuropathy, I had or still have the side effects you name. The swelling is on my left leg. I've had minor swelling on my L foot since BC (Before Cancer), especially in hot and humid weather, but now my whole lower left leg can swell. The cardiiologist has assured me that it's not from congestive heart failure, but from lymph edema.So, on the hottest, most humid of days, I can be spotted wearing support knee-socks. Or keeping my leg elevated in my hammock.

    My irradiated skin was awful. It went from being very pale to be being literally black and dead, sloughing off in bloody sheets. Before I was discharged from the hospital the last time (hospitalized x 3 for neutopenic fevers), the oncologist gave me 2 units if whole blood and 2 units of platelets - as soon as that happened, my skin began to heal quickly. 

    To reduce tushy pain, look into using Sage Products Comfort Barrier Cream Cloths until such time as you can go back to toilet paper.. They are very soothing. They are large, so I cut them into quarters, the size of toilet paper squares. They are rugged, but very soft, far superior to baby wipes. You can get them through Amazon. I bought them by the carton for a year. I couldn't have survived without them. I don't know if other companies makes a similar product. They are used by the Hudson Valley VA for their nursing home patients.   https://shopsageproducts.com/store/p/56-Comfort-Shield-reg-Barrier-Cream-Cloths-8-Pack.aspx

  • ginatom
    ginatom Member Posts: 44 Member
    #4
    Peripheral Neuropathy, foot numbness & weird sensations

    Hi everyone - I haven't been on in awhile!  I finished the Mitomycin and 5-FU and radiation four years ago last week, and hey, I'm still kicking!!!  I'm fine in many ways, but I have a number of chronic post-treatment issues.  Some I know many of you have, but today I want to ask about numbness in the feet.  My feet feel weirder and weirder - on the bottoms, on the tops, and I feel like it's progressing.  I think it started around a year ago. I thought it would be from the radiation, but now I'm leaning toward thinking it's from the chemo (from my reading).  It's - haha - I was going to say it's "unnerving", and I guess that's pretty accurate!  There isn't pain.  And I can feel light touch.  But walking on the wood floor I feel like different spots of my feet are experiencing different temperatures and also different sensations.  

    I was even remembering the other day - when I was a kid skating with those old metal skates - and then AFTER skating my feet still felt like they were vibrating like they were when I was skating.  It feels like that!!!  I'm scared it's going to get worse, which is not helpful, I know.  

    So what I want to know is - have other people had this and has there been ANYTHING that has HELPED?  Acupuncture?  Homeopathy?  Drugs?  Anything?

    Happy to be alive, but really hope I can get this controlled!  

    Much love and support to EVERYONE who has gone through this ridiculous anal cancer situation.  I really am so proud of you all for putting one foot in front of the other, continuously.  

    Jeana

  • Fengshoe
    Fengshoe Member Posts: 23 Member
    #5
    Neuropathy

    So glad you’re feeling better except for the numbness and neuropathy. I had tingling and numbness as well as frozen shoulder joints from the chemo. Have you tried B12 supplements? My oncologist suggested B12 supplements so now I take a B complex in addition to my other supplements. I also went for pelvic floor and shoulder physical therapy. Maybe physical therapy would also be helpful?

    Keep working and stay positive! You will be the winner!

  • annie4145
    annie4145 Member Posts: 218 Member
    #6
    ginatom said:

    Peripheral Neuropathy, foot numbness & weird sensations

    Hi everyone - I haven't been on in awhile!  I finished the Mitomycin and 5-FU and radiation four years ago last week, and hey, I'm still kicking!!!  I'm fine in many ways, but I have a number of chronic post-treatment issues.  Some I know many of you have, but today I want to ask about numbness in the feet.  My feet feel weirder and weirder - on the bottoms, on the tops, and I feel like it's progressing.  I think it started around a year ago. I thought it would be from the radiation, but now I'm leaning toward thinking it's from the chemo (from my reading).  It's - haha - I was going to say it's "unnerving", and I guess that's pretty accurate!  There isn't pain.  And I can feel light touch.  But walking on the wood floor I feel like different spots of my feet are experiencing different temperatures and also different sensations.  

    I was even remembering the other day - when I was a kid skating with those old metal skates - and then AFTER skating my feet still felt like they were vibrating like they were when I was skating.  It feels like that!!!  I'm scared it's going to get worse, which is not helpful, I know.  

    So what I want to know is - have other people had this and has there been ANYTHING that has HELPED?  Acupuncture?  Homeopathy?  Drugs?  Anything?

    Happy to be alive, but really hope I can get this controlled!  

    Much love and support to EVERYONE who has gone through this ridiculous anal cancer situation.  I really am so proud of you all for putting one foot in front of the other, continuously.  

    Jeana

    I haven't had that side

    I haven't had that side effect, but it is worth going to the doctor to make sure that nothing else is happening that could cause it.  We all have more and more issues come up as we get older, but glad to be around to have to deal with it.

  • Gemma573
    Gemma573 Member Posts: 3 Member
    #7
    Post Treatment Side Effects

    Hello all.  It's been 4 years since I had radiation/chemo treatments. Smile  Currently, the stomach gurgling and gas seem to be happening more frequently throughout the day.  Does anyone have advice for preventing or lessening?  Like mentioned above, the stomach gurgling is loud! and both are quite embarassing.  I have several other long term side effects, but to address wierd foot sensations, occasionally one of either of my feet will become very warm in the arch on the bottom.  It feels like I'm standing on a heating pad. So wierd! I continue to have stomach aches every 3-4 weeks that last around 4 days followed by around 4 days of bad (worse than usual) diarrhea. I watch what I eat and drink (so sad I can no longer have red wine, margaritas, and bloody marys...tomatoes are out, too, which means pizza and anything else with tomatoe sauce is a no! Frown) Is anyone else having stomach issues?  Also, recently, I had UTI-like symptoms for several months. I tested negative for UTI and my urologist said it was most likely bladder tissue damage from the radiation treatments.  The list goes on, but those are currently my most bothersome side effects.  Thank you for any advice/suggestions you may have.  

  • emdaniels
    emdaniels Member Posts: 5 Member
    #8

    I am 18 months out of treatment and the stomach gurgling started about 6 months ago. I have frequent bouts of diarrhea most days and take anti-diarrhea meds almost on a daily basis. I did tell my doc about this and she recommended taking a fibre supplement (such as Metamucil) but that doesn't seem to be helping.

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