Asked by angeldancer on Monday, March 24, 2014


    My second round of folfox chemo with radiation felt like torture. I don't know what to do Radiation has fried me and I am still burning. Chemo has put me in excruciating pain. The oncologist seems to not care about the extreme torture. It hurts to "P" and poop from the inside out. I am screaming and have been screaming for almost 2 weeks. I can't use the bathroom without being in the tub praying for relief and for hours. The problem is I have cold sores and thrush in every crevice. The sores are down my throat inside my rectum and inside my urethra. Did anyone have these problems? What did you do? In this 2 weeks I have lost more weight than I should have. I am at my elementary school days weight. Morphine is not making me want to eat????

    8 Answers from the Community

    8 answers
    • cam32505's Avatar

      Wow, you are having a difficult time. I had a different type of cancer, but I have to say I felt worse during treatment than I did having the cancer. All I can suggest is good pain meds and don't worry about the weight loss. Most of us need to lose weight. I had radiation to the abdoman and had severe diarrhia. I quit eating because I didn't want to have to go to the bathroom. Unfortunately, radiation made sure I went whether I ate anything or not. You just have to get through the treatment, in the hopes of survival.

      over 7 years ago
    • Catitude1's Avatar

      Angeldancer, I'm so sorry to hear you are having such a tough time! I don't have any experience with radiation or the cold sores, but I do get the esophageal thrush (though I didn't get it while on FOLFOX, just with FOLFIRI). I use daily probiotic capsules which help to deal with it. I used to take an over the counter thrush treatment (they're called Diflucan here in Australia), which were more expensive and sometimes I'd have to take more than one dose to get relief. I wish I knew of something to help with the cold sores. All I can suggest is to try to make your point a bit more strongly with your oncologist about the pain you are in - maybe there is something more that can be done to help you. I'll be keeping you in my thoughts and hoping that things get better for you.

      over 7 years ago
    • glam's Avatar

      Dear angeldancer.....I am so sorry you are having such a difficult time.....I didn't have radiation only chemo but I almost died during first protocol which included FOLFOX6 modified and Cetuximab.....I had sores and thrush throughout my body and internally also....from my mouth to my anus......You will have to talk with your doctor to see what you can and what you can not take to relieve this pain because when we are in the middle of treatment and very weak anything can make it worst and/or can interfere with your treatment.....for example.....there was a time that I could take Aloe Vera pills but there was another that it caused diarrhea......some options to discuss with your doctors maybe aloe vera (both pills and/or on your skin to relieve the sores and thrushes)....extremely moisturizing cream (those that get a full layer on it.....I used to use eucerin aquaphor......it was horrible because I use to put a very thick layer of cream and not to spread because my skin used to bleed for anything so I had to be at home all time waiting the body to absorb the cream.....but anyhow it used to relieve the injuries.....also I only used to use those wet towels for babies and never toilet paper to dry after washing the zone.....if your doctor don't pay too much attention to this matter talk with nurses and people undergoing treatment at your facility....I have always gotten excellent tips and inputs from them....wishing you all the best and that you can overcome this difficult time you....God bless you and continue blessing all of us

      over 7 years ago
    • stormy91649's Avatar

      Have had colon cancer for three years. The first was the Easiest cecause large tumor discover in colon was removed with resection and 6 months later pet scan revealed o CEA. Got a job at kennel then fell andhad trimaleior fracture. Felt it was worse than cancer. Had to wait 4 months for surgusurgery no insurance. Could not drive totally dependent on others. Finally able to walk again and side started to hurt. Found multiple metastac tumors. This time pain as tumors through the wall. Went mdanderson cause CHEMO wouldn't let me breathe. They took me off CHEMO and breathe came back. But they were only concered with breathing. After two trips to hospital found small bowel obstruction with unbelievable pain. Quit MDA to go to my original clinic only this time morphine 15 mg immediate release took pain away but always had to have under tongue med first. Dr put me on low residue diet. Nothing that grows. If it clucks walks swims I can eat it and have only had 2 episodes. There is pain meds out there for you. My doc is Dr Spent in spring Tx. Make sure he is Castro enterologist. Make him listen. Mos t patients s have difficulty explaining the kind of pain. Docs need to have accurate time line. When it hurts how far after eating. Because blockage is non operable timings so import and. He can pin point much more info from you. Get on internet to find out exactly how to explain what s happening . Blood test #'s are a guide you are the only One who has the real info. I have not had radiation and pray this little bit can help. Your nurse is your best buddy. Believe me there is relief for you. No one needs to suffer like you.

      over 7 years ago
    • barryboomer's Avatar

      Your Quote about the Oncologist just sort of dissing you made me Sick to my Stomach. I think they are so busy and immune to the horrors they make people go through and some of it is a coping mechanism.
      I have an itchy rash all over ( probably and eczema/dermatitis from my Lymphoma ) but nobody can be sure. I get the same thing from Doc.......nobody can imagine what itching from little things all over your body from these conditions can do to a person mentally.....they just can't get too involved I guess as it is just too much for THEM to deal with.
      The weight isn't the worry but the nutrition is. Make delicious fruit Smoothies and Fresh Veg Juices and make them sweet and delicious.....

      over 7 years ago
    • HOBO's Avatar

      I am Sorry for the pain you must endure. I did not have the same treatment but did do both chemo and radiation. Please talk with your care team. My onc was awful. No matter what I told him he would just shrug. Maddening. The nurses were a huge help. As a bit of encouragement, this is temporary. Once this round of treatment is done your body will get some healing time. Hang in there. Sending you warm hugs.


      over 7 years ago
    • CrazyHarry's Avatar

      I shared your agony last year at this time when I had just completed Xeloda and radiation. I couldn't pee with out extreme agony. Pyridium helped that. Plus you can marvel at the new color of your pee. During chemo phase 1, I was the king of constipation and finally settled on Miralax.

      On to phase 2 chemo or FOLFOX. Oxiplatin is terrible and I mass or through 2 treatments before he cut the dose in half and then discontinued it after round 4. And as I approached the 8th and final infusion, I was getting sicker and sicker. Nausea, pain, especially in my GI tract, from my lips to the end, felt like I had a drink of liquid plumber followed with a broken glass chaser. Long acting morphine at 30mg twice a day, lorezepam, and dialutid as needed. And some non-prescription magical baked goods really did the trick. I wanted to stop the treatments and had the option to, but I swim in the wrong end of the gene pool and hung I through the 8 treatments. It took about 3 months to recover from this.

      I soooo feel your pain and agony and send you peaceful and healing thoughts to help you on your journey.

      Today, I'm free of the original rectal cancer but found out recently that I have thyroid cancer with lymph node involvement. In 3 weeks we begin again with major surgery.

      P.S. Your oncologist sounds like a schmuck. Find another. There everywhere

      over 7 years ago
    • geekling's Avatar

      1. I'd like to grab that doctor of yours and shake him. You ought to have a variety of pain medications available .. although, in truth, they only take the edge off the pain.
      2. The thrush is not only from the chemicals. You need to address what you are eating. Although i do not have credentials, I know some things about food. Thrush can be fixed. Please dump all the junk food, cookies, breads and pastries they all told you to just eat as "something" in favor of more fresh greens & whole foods in your diet. No worries if you don't want to eat. Use a blender or juicer.
      Cucumbers are miracles of liquid with fiber and minerals. Celery has so much potassium. Add some (a big handful) parsley or mint or ginger or lemon as you prefer (for taste as well as better results).
      3. We all have an internal garden of little flora in perfect proportion and number. When one type of bacteria overruns the others, it is much like weeds overtaking a garden in your yard.
      Because the chemicals can affect your ability to taste, the juice blend I recommend is quite neutral and will not cause nausea.
      Externally, try aloe vera. Just make sure it is pure. The only raw and unpasteurized aloe of which I know is www.aloe1.com. It is a company inherited by an acquaintance of mine. Her name is Amy. There is a link for contact and questions so you can ask questions, mention your particular distress and tell her how you heard of it although I'm not sure that mentioning "geekling" or "Kathy" will get you any special treatment or pricing.

      Your doctor may object because he believes the product is not "sterile". The only part of the plant used in this product is the naturally sealed inner clear gel of the leaf which is not only Mom Nature sealed but contains only the healing properties and part of the plant. The products he thinks are clean are made from petroleum and will clog your pores disallowing healing to begin.

      CrazyHarry, I am very sorry to learn of this new development. My prayers are with you too.

      over 7 years ago

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