• Was told my chemo would be well tolerated. Had a week from XXX with severe nausea, joint and bone pain, severe chills and shaking after shower, constipation, then diarrhea. Is this typical?

    Asked by mykidshavepaws on Wednesday, February 29, 2012

    Was told my chemo would be well tolerated. Had a week from XXX with severe nausea, joint and bone pain, severe chills and shaking after shower, constipation, then diarrhea. Is this typical?

    Pemetrexed,Carboplatin, Zometa, Avastin. Neulasta 3 days later.

    13 Answers from the Community

    13 answers
    • nancyjac's Avatar
      nancyjac

      My medical team has been great from the very start. They have provided any and all information I asked for, orally, in writing, videos, books. There are lots of books and web sites about chemotherapy that explain chemo terms in laymen's terms.

      In defense of oncologists and and chemo treatment providers, many of their patients do understand oncology talk since many are second or third time cancer survivors. Others don't want to know the details, while still others are so overwhelmed by their diagnosis and/or initial treatment plan, that there is just no way to assimilate a lot of detailed information all at once. That is why many recommend you bring a family member or friend with you to appointments at first to take notes and help remember what has been discussed. They had me come back a couple of days later for a tour and orientation video in their chemo suite.

      Similarly, impersonal requires a 2 way street. Some patients want to become friendly with staff and other patients during chemo but some don't. The nurses in the chemo suite have a little party for patients when they have their last chemo treatment with confetti, a certificate and photos. But they are always pretty much in a hurry taking care of up to 12 patients at one time. As a patient, I appreciate their promptness and priority to the patients who need them right at that moment, even it that means they often don't have time to chit chat with us.

      I think the bottom line is that both the patient and the medical providers have responsibilities. Every cancer and every cancer patient is different. Medical providers don't have a magic ball that tells them from day one who you are, what you do or don't already know or want to know or not know. So it is up to us as patients to let them know what we want/need to know, at least in terms of terminology, level of detail, how much to sugar coat it, etc.

      over 9 years ago
    • RuthAnne's Avatar
      RuthAnne

      I'm a bit late responding to this one, but I was on six rounds of the same drugs as you are, with the exception of the Neulasta. My reaction to each round varied. Sometimes, I would feel pretty good, a little nauseated, fatigued and nauseous. Other times, I would be doing a lot of barfing. For me, the trick was hydration and nutrition. I tried to go into chemo well-hydrated and then drink TONS of water the day of and after. I also drank a super-nutritious smoothy a couple of days before and then during and after. That helped a lot.

      As far as the treatment being impersonal, I think doctors are trained now not to offer up information (especially if you have stage IV cancer), but to wait until you ask specific questions. So I guess my advice is, be proactive. Ask tons of questions, no matter how small and how much of a pain in the butt you think you are being. This is your treatment and, quite frankly, your life. MAKE them engage with you. The more you do, the more they will see you as a person and treat you as one.

      Best of luck. It does get better. :)

      over 9 years ago
    • mykidshavepaws' Avatar
      mykidshavepaws

      RuthAnne,
      Thank you for the good suggestions on hydration and nutrition.
      I'm really trying to eat the right stuff and drink lots of fluids. Today I feel too tired to do much of anything but fortunately have some easy to fix food. I also purchased a blender so I can make the shakes and smoothies.
      I saw the nurse practitioner at my last office visit. She gave me time to ask questions and was quite supportive. I don't need to be coddled, just treated with a little consideration and a basic level of compassion and she did that.
      I have asked my oncologist directly about ranges on survival and he will not answer that question. I do understand there are many variables and I suspect he needs to see how I respond to treatment before discussing it at that level. While I have a lot of support from friends and family, I'm single and feel I need to do some planning especially financial. I did see a lawyer who will draw up powers of attorney and beneficiary deed. I don't want to leave my family with a mess or a burden.
      I 'll continue to ask the questions as you suggested. I think of more and more as I go along. Thank you for your response and encouragement.

      over 9 years ago

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