Extreme Belly and Back pain due to Gas, Bloating, and Constipation. Reusing 5fu for progression.

npatel22526
npatel22526 Member Posts: 42 Member
edited June 2022 in Colorectal Cancer #1

Hello All, This is going to be a long post.

The past few weeks were very rough on dad, he is usually not the one to complain but he was moaning with abdominal pain so we took him to ER. The initial scan shows signs of inflammation in the intestine and colon which didn’t get better with steroids.  Neither his oncologist nor the on-call doctor is convinced the inflation can cause such extreme pain. He was in the hospital for 1 week, with excreting pain, very bad constipation, and blotting.  He had trouble moving bowls, simultaneously his enlarged prostate giving him trouble during urination. He is bloated and even I can tell from his belly but gas isn’t coming out of anywhere.  Magnesium citrate helped a little.  He barely took oxycodone for a day after his colon and liver surgery and now multiple strong (hydromorphone, 3 tabs of Tylenol, fentaNYL patch) isn’t giving him relief from pain for longer than 2-3 hours. The doctor concluded that constipation and his slow digestive systems are the culprits. He is now discharged at home as all his vitals are fine and also because nothing much the doctors can offer. It’s a vicious cycle, he takes these pain meds which cause constipation which leads Gas, and pain.  For now, he is home with so many laxatives and Gas reducers (Senna, GasX, DULCOLAX, GLYCOLAX). He thinks all of his pain is related to Gas build-up, the worst is when he goes to the head.

I read about some enzyme supplements, was curious if anyone had tried such things or had a suggestion for this.  He had 5 sessions of radiation in March for a lesion in his Illiac bone, not sure if that has anything to do with it but just read a couple of posts linking radiation with abdominal cramps

In the midst of all this, we requested to repeat his Bone scan to see if anything in the back/spine is contributing the to pain. Luckily, no Mets in the spine, but a few more Mets were found in Pelvis, so his Her2 targeted drugs Enhertu2 does not seem to work anymore. The next in line is STIVARGA (Lonsurf is not an option as he has low hemoglobin and blood counts),  the side effects sound horrible, I can not imagine what would happen to his digestive system if he were to start this drug.  I read about reusing 5FU may work after some time, the last dose he had was 2 years back in April 2020.  The Onc is saying that’s not an option as he progressed on it and reusing the same chemo rarely works. He barely had any side effects with that one.

Does anyone have luck repeating the 5FU or any other drug?  

I review all his CEA from the first time when he had 5FU, he took it for 12 cycles, and it was constantly decreasing. The Cancer reappeared in the liver right after short 5 months of remission, so I am not convinced that he truly progressed on 5FU.

Thanks

Comments

  • vivgrl
    vivgrl Member Posts: 34 Member
    #2

    I may be dealing with this issue in the future too. Take a look at this article: "Chemotherapy rechallenge in metastatic colon cancer: A case report and literature review" Nov 24, 2020, World Journal of Clinical Oncology, NIH, National Library of Medicine. Chemotherapy rechallenge in metastatic colon cancer: A case report and literature review - PMC (nih.gov)

    Also, I suffered brutal constipation that resulted in the most excruciating pain I've ever experienced (except maybe hyrdonephrosis). Went on for days. Senna, Colace, etc did not help. The only thing that worked was the simplest solution: Miralax. I put it in hot tea (Typhoo - strong black tea).

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,381 Member
    edited May 2022 #3

    Sorry your dad is in such a tough situation. Baking soda helped me with gas issues during chemo. I regularly take ground psyllium seeds. Probiotics or bromelain may be of some assistance--never worked for me. There was a member who used activated charcoal. Finasteride (Rx) can help with prostate enlargement. With things so bad, it might make sense to try various strategies and see if they work.

  • npatel22526
    npatel22526 Member Posts: 42 Member
    #4
    https://csn.cancer.org/discussion/comment/1696961#Comment_1696961
    https://csn.cancer.org/discussion/comment/1696961#Comment_1696961

    Hey I wish you best luck that you ever have to come to that point but thanks a lot for sharing that article, that is exactly what I was looking for, to convince Onc to consider 5Fu, he ease through the 12 cycle.

    We will certainly try with the Miralax.

    Best

  • npatel22526
    npatel22526 Member Posts: 42 Member
    #5
    https://csn.cancer.org/discussion/comment/1696971#Comment_1696971

    Thank you @SandiaBuddy , he used to take Baking soda earlier ( Just so many things to take that are not food) but that's great reminder, I do recall that it also help with kidney. I will read through activate charcoal. Back in days granparents and my parents were using Psyllium Husk for colon cleansing so hopefully adding that to mix would give him some relief and like you suggested will try few things to see what works out the best. Thanks again for your Advice. Finally, will discuss Finasteride with Urologist, currently he is on Tamsulosin , just last Friday got call from the office to schedule a procedure call Rezum for BPH.

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,381 Member
    #6
    https://csn.cancer.org/discussion/comment/1696974#Comment_1696974

    Just read a quick description of "Rezum." I wonder if adding a catheter, even if short-term, is something your father would want with all of the other issues he is facing?

  • npatel22526
    npatel22526 Member Posts: 42 Member
    #7
    https://csn.cancer.org/discussion/comment/1696976#Comment_1696976

    We are thinking about it but the procedure will not be scheduled until the second week of June , hoping things would get better by then. The Issues is that increasing dose of Tramdol may cause dizziness which is already happening wit current dose. As well not able to go pee or waiting good half hour might be also contributing factor to his current situation. With said that, you are I/we should re evaluate the situation when we closer to the procedure. I will update on his situation. Thank again for looking out.

  • Real Tar Heel
    Real Tar Heel Member Posts: 307 Member
    #8
    https://csn.cancer.org/discussion/325178/extreme-belly-and-back-pain-due-to-gas-bloating-and-constipation-reusing-5fu-for-progression

    When I had a recurrence last year, 5FU was one of the drugs prescribed. I decided not to take it at first because I'd read of limited benefits when paired with the other drugs. As my CEA counts ballooned, the 2nd opinion doctor I saw recommended that I add the 5FU, something I'd been thinking about as a possible tool to combat the CEA rise. Well, adding the 5FU didn't seem to do much of anything, my cancer had already sorted it out it seemed. It may have even made things worse. It's possible, according to the doctor, that the cells just needed more time to "forget" how to deal with 5FU, so perhaps if your father had been off 5FU for a couple of years it might be effective.

  • PamRav
    PamRav Member Posts: 348 Member
    #9

    Hello,

    I was dx stage IV in Dec 2016. I have had LAR, liver resection, liver ablation, radiation to lung and head. Ive had mets to liver, lung, skull base, and now possibly to hip and vertebrae, and maybe on adrenal gland. We have recycled all the 1st line chemos. I have been on FOLFIRI 2 separate regimens (12 doses each time) Had FOLFOX 1 regime (12 each) and FOLFOX in 6 cycle regimen I have always had Avastin and 5FU with every infusion It beats the cancer back for 4 to 8 months before it returns So yes you can retry them and sometimes you get lucky and they work.

    all the best to you

    pam

  • DanNH
    DanNH Member Posts: 186 Member
    #10

    We fought constipation for months. It was the cause of terrible pain that resulted in an emergency room visit. Once the attending heard “cancer” he gave Pam pain meds and sent her home. They never identified the true problem and as a result she suffered another month or two. You have to be your own advocate.

    We were able to discover that the problem was a fecal impaction and were able to reduce it from there once we identified it.

    We now have a routine that works and keeps things flowing. Miralax twice a day, 2 Senna tabs each morning and evening, adjust from there depending upon how things are going. Life is much better as is our attitudes about life.

    Clearing the impaction was involved. We used fleet enemas to hydrate the hard stools, suppositories to help things evacuate, magnesium citrate, senna, and Miralax. Senna was very very effective. Colace also helped soften things.

    Chiropractor manipulated nerve pathways to reduce blockages by the ileocecal valve and massage the digestive intestines to help move things along. Pam was able to push the hard masses along by gently pressing on her abdomen.

    Straining caused a hiatal hernia that caused a lot of very intense pain and sour stomach. Chiropractic manipulation by chiropractor and naturopath pulled the stomach into place and reduced intense pain very significantly. This was by no means a short process. Stomach was adjusted multiple times as straining caused reoccurrence. It improved as we figured it out and cleared things up.

    An endoscopy biopsy discovered a H.pylori infection and antibiotics cleared that up. It was a huge improvement for quality of life. No more sleepless nights from intense stomach pain.

    Once things are clear it is important to keep up the protocol! Miralax every day, senna every day and adjust how much and how often based upon how things are moving. If you stop and wait to respond to a slow down you may loose momentum and risk having to go through the painful process again.

    There are some helpful videos on YouTube and good advice in the forums. Don’t wait for days to pass without a BM before taking action. The intestines will draw water from the waste and it gets dry and hard. Opioid pain meds slow down body functions and that helps cause constipation get started.

    Sorry my response is scattered but things kept coming back in my memory as I began writing about this. I am so grateful that it is in our past and hope it never gets out of hand again!

    Dan

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