• 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
    • GregP_WN's Avatar
      GregP_WN

      As everyone here will tell you, it's different for each of us. Some take it without a problem, others have severe reactions. I had the same symtoms you describe. Tell you dr.'s about every little thing that is happening, it helps them to plan your next treatment and to know how it's affecting you helps them do their job better.
      Good luck to you in the treatments, I hope they are easier.

      about 5 years ago
    • leepenn's Avatar
      leepenn

      When I had a crappy week, I told all... and they changed up my pre-chemo drug cocktail... It did make a difference. Drummerboy speaks good advice here!

      Neulasta deifnitely causes bone pain - I had that.
      Carboplatin is big on the nausea...
      The pre-chemo drugs are big for constipation... I had that.

      Sucks - sorry you're having a rough time.

      Interesting that we cannot even say the mildest of swear words here... I assume XXX was h eeee double hockey sticks?

      about 5 years ago
    • CountryGirl's Avatar
      CountryGirl

      I took different drugs with a similar reactions. The neulasta shot was rough, but necessary for me as my immunity definitely. Sexed the boost. I took OTC Colace for constipation. My husband, who maintained his sense of humor during my treatment, joked, "of course your body is freaking out; you've never been poisoned before." it always seemed that as soon as I started thinking the symptoms might be normal, something would change.

      I had a chemo buddy who was taking the same drugs and we compared notes frequently.

      about 5 years ago
    • nancyjac's Avatar
      nancyjac

      Yep, pretty much the same side effects I have. Tell your oncologist about all of them. Most of them can be managed so they are not as severe. I take dexmethazone for the nausea, tylenol or ibuprophen for the bone pain, stool softener for the constipation, immodium and BRAT diet for the diarrhea, and just wear a lot of clothing for the chills.

      about 5 years ago
    • po18guy's Avatar
      po18guy

      It is true that the average patient may tolerate a given regimen of chemotherapy well. The problem is that none of us is exactly average. Since all anti-neoplastic material (chemotherapy, radiation) is toxic, as drummerboy said, we can have each and every one of the side effects that were explained to us. Actually, we can experience side effects that are not listed on the fact sheets. Our bodies are reacting to being flooded with toxic material. Now, this can certainly make treatment a rather low point in one's life, but we must always take into account the enemy that we are fighting. It is a war, so we can end up becoming the walking wounded. But notice that we are not only alive, but able to walk, or make a quick dash you-know-where! When suffering, I think it is best to focus on the goal: winning the war. Try to look beyond your present distress to the day in which all of this will be behind you.

      By now, I would hope that you have the veritable home pharmacy of medications to counter the variety of side effects. In my case, I was taking something on the order of 30 capsules and tablets daily. Only one of them was related to my treatment - the rest were to counter the side effects. There were anti-virals, antibiotics, anti-fungals, anti-emetics, anti-diarrheals, laxatives, as well as a few I have probably forgotten. Yet, this does not last forever and by the power of the human will, one may not only survive it, but actually retain a bit of their sense of humor. In truth, I think that was best medication of all, as a few laughs can be the only source of light during some dark days.

      Excellent advice to keep track of side effects and notify your team. You might note the day and time that the effect occurred, as it may be something that your doctor can modify your treatment to reduce or avoid. In nearly all cases, drugs are available to make the journey into something much more tolerable. Some of these drugs are over-the-counter preparations and have very few side effects of their own. So, I would guess that the operative words here are: communicate and medicate. Oh, and laugh when you can.

      Praying that you are winning the war.

      about 5 years ago
    • cranburymom's Avatar
      cranburymom

      same here too. I got pretty much all side-effects listed and more....it is IMPORTANT to communicate this with your doc and nurses. Not only they will give you advice and more meds (perhaps), but it will give your ONC an opportunity to adjust or shift treatment for you.
      I found out this later, but different practice and dosing regimen are done for Japanese patient (which I am). So my ONC is adjusting dosing now after we discuss this with my laundry list of side-effects (!!!). Good luck!!! Keep asking questions - we all are here for you.

      about 5 years ago
    • nancyjac's Avatar
      nancyjac

      "Well tolerated" means, it doesn't kill you or cause other problems (e.g. heart damage, infections, etc.) that would interrupt your treatment. It doesn't mean you don't get side effects.

      about 5 years ago
    • leepenn's Avatar
      leepenn

      nancyjac - good point.... when i was feeling particularly crappy, i was surprised when they told me i was tolerating the treatment well.... wha?????

      about 5 years ago
    • akiko's Avatar
      akiko

      Everybody is different.
      severe nausea: I started having it after 4th round of chemo
      joint and bone pain: Never had one until the 4th round
      severe chills and shaking after shower: If you have one, you should talk with your doctor.
      constipation, then diarrhea. I had unusual constipation once and I thought I almost died!!! I try to control it by senna. Combination of both are hard.

      Chemo is toxin. I agree, well tolerated means chemo is not killing you. One of my friends told me that her friend died during chemo session because of dehydration since this person did not drink enough water. I was told the effect of chemo is cumulative and the last one could be the hardest. I believe taking lots of water sounds simple but difficult but this could be the one of things we can do.

      about 5 years ago
    • mykidshavepaws' Avatar
      mykidshavepaws

      Thank you for all for your responses. It's been enlightening. Perhaps they should provide a directory of definitions of "oncology talk". I totally thought well tolerated meant minimal side effects, if any. Do they think you're supposed to understand this? I have been very disappointed with the lack of orientation to the treatment process. Everyone is in such a hurry. My first chemo session I was greeted with "find a chair." It was a rather surreal scene and no one was very nice until I became anxious and required ativan. I'm a nurse but specialized in maternal-child so don't know a lot about the cancer treatment process. I do know that as a nurse I should never assume someone understands medical lingo or the process of their treatment. They give me stuff to read so I suppose that has to suffice. They come highly recommended. Is it this impersonal everywhere?

      about 5 years ago
    • 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.

      about 5 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. :)

      about 5 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.

      about 5 years ago

    Help the community by answering this question:

    Create an account to post your answer Already have an account? Sign in!

    By using WhatNext, you agree to our User Agreement, and Privacy Policy


    Read and answer more lung cancer questions.  Also, don't forget to check out our Lung Cancer page.