When does it get better?

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sticktalker
sticktalker Member Posts: 1
in Esophageal Cancer #1
Hello Board!

I'm writing this for my dad who is in bed at the moment. He wanted me to inquire about when does this get better? He has had three weeks of radiation and chemo. He missed last week of radiation, and does not see how he can get back on Monday. He had a feeding tube inserted last Wednesday and has been only taking a bit of food. He is also diabetic and can not take his pills orally any longer. He really feels like crap all the time and was hoping there might be someone out there that can offer some hope and perhaps suggestions on how to get through the next three weeks of treatment. No surgery at this point, and we all just want him to not be in pain, but it seems like that all is he is in right now.

"Everybody I talked to says it gets worse before it gets better, everyone, but when? Two weeks after radiation, nearing the end, when?
Any suggestions would be helpful!" Esophageal cancer

PS is there a chat room? New here and haven't really looked around much.
thanks!

Comments

  • chemosmoker
    chemosmoker Member Posts: 501
    #2
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    GET LIQUIDS FOR PAIN!!!
    They make LIQUID pain meds in all the same medications they have in pills ask for those ASAP

    Hope this helps. Pain is NOT acceptable.


    Eric
  • cher76
    cher76 Member Posts: 292
    #3
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    Not just liquid pain meds,
    Not just liquid pain meds, but most medications can be compounded into liquid form. My husband has great difficulty swallowing only the smallest of pills, so our doctor prescribes the suspension form. Many of your individually owned pharmacies offer compounding, as well as some of the chain drugstores. We have not had radiation to the esophagus, so I can't be of any help there. Do keep him hydrated as much as you can. That seems to be a big key with this disease.
    Hope this helps,
    Cheryl, wife of Rickie, dx stage IV EC, Oct. 2010
  • BMGky
    BMGky Member Posts: 621
    #4
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    It can be a rough ride.
    He's half way through the usual 6 weeks of chemo/rad. I didn't understand your comment--no surgery for now. Is he going to have the opportunity to have surgery. It will help others to know what stage his cancer is. There are all stages on this board and those that are of the same stage can have the experience to give pertinent suggestions.

    My husband had to have all of his medications as liquid as he got a throat infection. His feeding tube became his best friend as he could take nothing by mouth. Watch his hydration level. My husband got very weak. Had to be hospitalized twice during treatment. They started giving him fluid IVs along with radiation, and it really helped. I will say the last three radiation treatments really zapped him. Then, he had the four or so weeks before the surgery. Each day, he felt better.

    Fortunately, he was eligible for surgery, the cancer was removed, and 16 months post op, still is cancer free and enjoying life. That is not to say the journey is easy. It was some 7 months post op before he really got an appetite and got a bounce back to his step.

    During treatment, he had trouble with the sugar in the liquid feedings. We checked his sugar according to doctor's instructions. Below a certain level; do nothing. An elevated level, take the "artificial" insulin. High level, take "true" insulin. Excuse my lack of knowledge on the specific medical terms.

    Hang in there and keep trying. Also, please check in daily and let everyone know your questions, someone will try to help. There are true experts on here. Best of luck. BMGky
  • NikiMo
    NikiMo Member Posts: 342
    #5
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    A liitle while to go
    Hi stick talker,

    My 48 year old husband had treatment this summer, 6 weeks of FOLFOX with 28 continuos days of radiation. He felt relatively well until the last two weeks and then it did get worse before it got better. He started to feel stronger about 3 weeks after the end of treatment, then had surgery 3 weeks after that. I think we can offer suggestions but we need more info. What stage is your dad, you mention no surgery so I would assume stage 4 and I am sorry to hear that, but let me know if I am wrong. Does your dad have a port for Chemo and a feeding tube? If he has a port ask for daily hydration, that has helped my husband tremendously with post op Chemo. Also if dad has a feeding tube is he using it? He needs to get nutrition to finish treatment. Lastly you say he is in pain, what kind of pain and what Meds are they giving him? We can provide mounds of advice if we have the answer to these questions.

    Tell dad he is not alone in this battle, we are here,

    Niki
    Wife to Jeff T2N1M0
    IL 9/6/11
    NED at present
  • Ginny_B
    Ginny_B Member Posts: 532
    #6
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    NikiMo said:

    A liitle while to go
    Hi stick talker,

    My 48 year old husband had treatment this summer, 6 weeks of FOLFOX with 28 continuos days of radiation. He felt relatively well until the last two weeks and then it did get worse before it got better. He started to feel stronger about 3 weeks after the end of treatment, then had surgery 3 weeks after that. I think we can offer suggestions but we need more info. What stage is your dad, you mention no surgery so I would assume stage 4 and I am sorry to hear that, but let me know if I am wrong. Does your dad have a port for Chemo and a feeding tube? If he has a port ask for daily hydration, that has helped my husband tremendously with post op Chemo. Also if dad has a feeding tube is he using it? He needs to get nutrition to finish treatment. Lastly you say he is in pain, what kind of pain and what Meds are they giving him? We can provide mounds of advice if we have the answer to these questions.

    Tell dad he is not alone in this battle, we are here,

    Niki
    Wife to Jeff T2N1M0
    IL 9/6/11
    NED at present

    My mom (84) TxN2M0 was on
    My mom (84) TxN2M0 was on her way to her 4th rad treatment when the Onc nurse said take her to ER. I took her Tuesday night and brought her home Saturday evening. Seems all her chemistry went berserk. Low Sugar, Potassium, Electrolytes, Sodium, etc. She was pumped full of IVs, given an insulin shot, changed her HBP meds (that was in the 180's) and basically brought back to normal.

    Tomorrow we go back to start her Chemo pump (we turned that off on Wednesday morning in the hospital), and visit with the radiologist. Not sure if they'll radiate tomorrow or not. Supposedly this week she was supposed to start Radiation boost, but now I'm not sure if that's going to be delayed.

    She has missed 4 days of chemo and 4 days of rads. Once she starts back on those, we have to watch to make sure her chemicals don't go haywire again. Having never been around a chemo patient, I thought her reaction was normal for chemo and rads. Now I know. The key was when she lost bladder and bowel control.

    Mom is not in any pain and has been pain free for a couple of weeks. (since around the time we stopped arguing about taking her Morphine Sulfer as directed.) I don't know why she is pain free. Takes pills and vits like a trooper. Today we actually had several lovely conversations!

    Maybe the bad times are coming...
  • Ginny_B
    Ginny_B Member Posts: 532
    #7
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    Ginny_B said:

    My mom (84) TxN2M0 was on
    My mom (84) TxN2M0 was on her way to her 4th rad treatment when the Onc nurse said take her to ER. I took her Tuesday night and brought her home Saturday evening. Seems all her chemistry went berserk. Low Sugar, Potassium, Electrolytes, Sodium, etc. She was pumped full of IVs, given an insulin shot, changed her HBP meds (that was in the 180's) and basically brought back to normal.

    Tomorrow we go back to start her Chemo pump (we turned that off on Wednesday morning in the hospital), and visit with the radiologist. Not sure if they'll radiate tomorrow or not. Supposedly this week she was supposed to start Radiation boost, but now I'm not sure if that's going to be delayed.

    She has missed 4 days of chemo and 4 days of rads. Once she starts back on those, we have to watch to make sure her chemicals don't go haywire again. Having never been around a chemo patient, I thought her reaction was normal for chemo and rads. Now I know. The key was when she lost bladder and bowel control.

    Mom is not in any pain and has been pain free for a couple of weeks. (since around the time we stopped arguing about taking her Morphine Sulfer as directed.) I don't know why she is pain free. Takes pills and vits like a trooper. Today we actually had several lovely conversations!

    Maybe the bad times are coming...

    Mom is Stage III

    Mom is Stage III
  • unclaw2002
    unclaw2002 Member Posts: 599
    #8
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    H,Tell us a bit more about
    Hi,

    Tell us a bit more about your dad. My dad was Stage III when diagnosed and he was also diabetic (type two under control) and took high blood pressure medicine. Other than that he was in excellent health and very active.

    The chemo, especially the steroids, administered with the chemo can make blood sugar levels go really out of wack. That alone can make you feel pretty lousy. It is important to keep him hydrated and get an IV if he won't drink enough water. As for the pills --- my dad used the injectible pens and that helped him keep his sugar under control. I am sure you know stress makes sugar level rise, so just imagine the stress and then the steroids and not eating properly and getting enough fluids. It is essential for diabetics to make sure they manage their sugar levels but we were more worried about making sure he got food in him, glucerna shakes a couple of times a day and lots of water. And if his sugar got a little high he would increase the insulin a little bit. Hydration is essential so don't let him go very long without getting enough fluids because that will make him sick as well.

    As for pain, he should be prescribed pain medication that he can take at home when he is in pain. There is no need for him to suffer needlessly.

    Good luck. Best Cindy

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