Need advice on the ups and down’s of CC

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    This is a disease of ups and downs unfortunately. I know of when my husband was battling it seemed like we took two steps back for everyone forward. In fact I know I called it a roller coaster at one point too.
    My husband did GemOx too and while he didn’t have much neuropathy the cold sensitivity got to him. It seemed to stick with him even after he stopped.
    I can say that makes sure he’s not over doing it on the days he feels good. Some people have a tendency to push to hard on good days because they feel good then pay for it. As for the nausea make sure he is taking anti-nausea meds around the clock. If the doc wrote three times a day as needed then take three times a day instead of waiting for nausea to hit to take. Like pain meds anti-nausea meds work better if taken before the nausea hits.

    Hugs and hopefully the bumps flatten out.


    SMG……you are so correct, there is nothing easy about your situation in fact, dear SMG, it is downright tough. When our bodies betray us, we loose control over our live. Everything changes around us;, things we did yesterday don’t apply to today. Perhaps your Dad wants to stay in control over what he feels can be managed by him. Is it possible to convince him to allow someone else keep track of the meds?


    Thank you Marions! It is relieving to hear someone chime in for this is a roller coaster ride for our family! We are trying to plan for our living conditions to include my dad under our roof & it is so up and down…. I don’t know what to do sometimes but have the biggest desire to crawl into a hole for a day or 2.

    The other day, he wanted to argue he was taking 10mg of Oxy when I know he is on 20mg. I even called pharmacy to confirm when they filled his med cuz he was about out. Only to come to find out, he is not taking the correctly…hmmm! He is not taking them on a continuous basis as he should….hence, one day good, next day bad!

    I have to remember that this is not a time to judge but a time to understand that cancer can speak in many different ways….he is confused, but still here mentally but cancer is slowly showing its self in his actions/ convo :(


    SMG……you have some valid questions. Drastic weight loss and increasing nausea (reported in your previous posting) are concerning. Regardless of the upcoming scan, I would discuss with the physician the issues at hand. Why your Dad experiences alternating “feeling good” versus “not so good” days are somewhat acceptable to me, as he is ill and some days simply are better than others.
    Hoping for others to chime in on this conversation as well. Collectively there is a quite a bit of knowledge on this site.


    My dad has been battling with stage IV CC with mets to lungs and Bones for 20 months now. He started GEMOX last March 2015. His port was put in in April 2015 and was a nightmare of infections. Once port was taken out, he started to feel better. About Sept. 2015 Dr took him off Oxaliplatin due to neuropathy. The Dr. Continued to treat with Gemzar and Xgeva for bones. Dad has been stable as of his last scan in November The neuropathy has been the worst symptom. He tried many different Meds to treat neuropathy but none were helping and it just continued to get worse. The Dr. Said very small % maybe 1-5% have neuropathy from Gemzar but that it could be causing his neuropathy to get even more worse. Dad agreed to stop Gemzar for a month to see if things change. He had some relief and actually said he had some great days with his hands and feet. However, the Xgeva shot about wiped him out for a week. He said he felt like every bone was broken. Pain level was a 10 on scale of 1-10. On his last visit 1/26/16, he was not given any treatment. No chemo and no Xgeva for Quality not quantity. His next scan is 2/22/16.

    Now to my question…. Ups and downs. He has lost 20lbs since Dec. which Dec. 15 2015 was his last chemo treatment. Some days he feels well enough to go to work but then if he makes 1 day then he may not make the next 2. Neuropathy can be so bad some days but others ok. He is eating but battling W/ nausea more and more. Mets to the bones with lower back pain that can cripple him one day but the next day or 3, he is fine with just some fatigue. One day I am clenching my fist not knowing if he is turning for bad but the next day, I am so relieved he is not in pain & start seeing positive. Roller coaster ride for sure!

    Is this normal for this “not so normal” cancer? Any advice or input would be greatly appreciated

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