• Side Effects- Were you warned or told about all the side effects associated with any medications or treatments you have had?

    Asked by GregP_WN on Wednesday, September 20, 2017

    Side Effects- Were you warned or told about all the side effects associated with any medications or treatments you have had?

    Does it matter, did you say NO, I won't take that or have that procedure done because of the possible side effects? Some people will say that the side effects are worse than the disease. In some cases, I think that is true. But what do we do, just sit and wait for the alternative to drop in? Where are you on this issue?

    11 Answers from the Community

    11 answers
    • BuckeyeShelby's Avatar
      BuckeyeShelby

      Carboplatin/taxol. I knew about the possibility of neuropathy. Actually started really early. My medical oncologist asked me if I wanted to do 5 instead of 6 sessions in hopes of curtailing the neuropathy. Since I already had the symptoms, I told him I'd rather go ahead and complete the treatment to try to bash down any lingering cells. He agreed w/my assessment. So far, so good -- I have the neuropathy and probably always will, but still NED almost 5 years after completing treatment.

      over 4 years ago
    • geekling's Avatar
      geekling

      No. I not only was not warned about the side effects of treatment, I was actually told bubbameisters when I asked questions. My concerns were brushed away with fairy tales and lies.

      Yes. I explained that I did not wish to begin treatment if such and such were a resultant effects. Again, I was soothed by siren songs which led me to where I am today.

      I did not realize just how much and many stories I was given. When a tech asked me to swallow what turned out to be contrast, I refused because no one had bothered to mention a poisonous cocktail to me. The tech said I would swallow or he would refuse to perform the test or scan (I barely remember which invasive sort of look see it was). I said fine and turned to leave. The door had barely closed behind me before the tech was through it, chasing behind me and saying he would do the test.

      Smack dab in the middle of the protocol, I was given a "break". Until that time, I had taken zero pain medications. I went back to my then house to bemoan my fate. My body came out of shock/focus and the agony began to wash over me. Exactly what I had said I would not tolerate had been done to me.

      Over those five days of "break" as I heard myself moaning, as I began to understand the full ruination of my physical self, as it sunk in that the radiologist had used me as an experiment of both his protocol and his ability to control others, a full extent of my downfall began to wash over me.

      Since I was still alive, even so, I decided to finish the torture because since I was meant to continue (i.e. still alive) despite what has been taken from me, I might as well go forward without the cancer. I wont ever know if that decision to endure another 40 radiation sessions was a correct one.

      I switched radiologists and finished treatment dwelling on concentration camp victims and how easily evil intent can trick people into self harm and into a cage or a noose. It really wasnt until the River Discovery whitewater trip that I met souls gentle enough to open wide my heart again.

      My belief is in food as medicine. I firmly believe that had any of thevover 100 physicians from whom I sought councel been able to diagnose me over the 13 years I knew something was wrong, I would have been able to use alternative methods to fix myself. There was also the unawareness that there was toxic mold in the house where I lived. So much was stacked for me to overcome.

      I believe being radiated while breathing in that garbage made my allergy 100 fold worse. I was an early pioneer or explorer.

      I hope more doctors can now recognise anal cancer in a woman and that people and insurance companies understand that wetted interiors must be replaced rather than sealed and painted.

      over 4 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      For radiation, I was told nothing prior to getting it. The radiation oncologist did say that we were going with 15 treatments rather than 5 (SBRT) because the tumor was too close to my esophagus and some nerves that could permanently affect the use of my right arm and hand if we weren't careful.

      After I was 1/3rd of the way through, they mentioned I might burn (I didn't). They also mentioned I might get a sore throat (and I did). They NEVER mentioned anything about going to the dentist, etc., etc. Luckily (?), I already lost all of my teeth, so it is not important, but I thought it odd they didn't mention it (before knowing I already have dentures).

      For chemo and immunotherapy, I was given paperwork to read that listed every side effect known to man.

      When Wayward Tumor showed up recently, my medical oncologist wanted me to go on Docetaxel. He tried to underplay the side effects. What I knew is that I didn't tolerate chemo well the first time around and my first oncologist told me docetaxel was harsher and not as effective as my first line of treatment. I said, "No thanks," and set about finding an alternative solution. That's how I ended up in radiation!

      I do not know if my medical oncologist will ever really forgive me for not going along with his plan and for deciding on my own treatment plan. I hope he does, but I have NO regrets for saying no to chemo and yes to radiation.

      over 4 years ago
    • barryboomer's Avatar
      barryboomer

      I only had radiation and was lucky that I had NO Side Effects. It was on my Sciatic Nerve. BUT if it is in other places like the neck or head area or colon etc there can be really crappy side effects.
      I'm on a few cancer support groups and the people complain about not getting all the info on side effects especially on chemo brain. Most said that it was just dismissed as not caused by chemo and many said they wouldn't have done the chemo if they knew how extensive the chemo brain was. BUT telling people about a lot of this is bad for business. They say not everybody gets the side effects but I hear from others that almost everybody gets them.....

      over 4 years ago
    • SandiA's Avatar
      SandiA

      My radiation oncologist met with my sister and I for over 2 hours and told me about every possible side effect. At the end he looked at me and said I am so sorry for what is about to happen to you. I listened but my son was getting married in two months and I just wanted to start treatment and get to the wedding so I would have agreed to anything. Then when I started immune therapy I was told the cancer was back and it was in my lungs, liver, spleen and hip. Again i knew I had to try anything to save my life so I signed every paper they gave me with possible side effects. So I have to say yes I was told, but was willing to do whatever it took.

      over 4 years ago
    • robere's Avatar
      robere

      There was far from full disclosure of the possible side effects. The answers were often incomplete, some answers were design to mislead or under- represent the possible consequences of treatment. Statistics were fabricated on the fly to try to influence my decisions. Extremely inappropriate pressure was also put on my spouse to try to influence my treatment decisions.

      Having research the topic and with a naturally open minded, yet non-compliant nature, I was comfortable confronting the situation for what it was: a doctor, with a minor god-complex, trying his level best to save my life; unfortunately, a doctor focused on treating a disease and rather indifferent to me as a unique patient; a doctor with his own values and priorities which differed from my own; a doctor indoctrinated in an approach and following a rigid protocol with a fundamental belief in its appropriateness as the best way forward given all the unknowns. Given the nature of his work and the tragedies that he must witness, I can empathize if not fully agree with his approach.

      I choose to have half the recommended treatment area radiated. I had head and neck cancer of unknown origin and limited the radiation to the side of the head where they suspected that it had originated from a tonsil. This would allow me to better pursue my active lifestyle by preserving some saliva function. They quoted that the likelihood of success was 14% less with my chosen option. I indicated that that was an acceptable trade off, it essence good “pot odds” for my lifestyle preferences. How this 14% was arrived at, I have no idea given all the unknown issues and frankly discounted it as simply noise. I also turned down the recommended chemo as I had not done adequate research to make a comfortable (not necessarily correct) decision and, in truth, my oncologist was not overly aggressive about this additional step.

      Three years and a bit since treatment, all going well, even significant saliva recovery on radiated side which wasn’t anticipated. No substitute for luck.

      It should be noted that I live in Canada where treatment is paid for through our taxes with no additional costs to the patient; as such, profit margins are not a factor for the doctor when recommending treatment options.

      over 4 years ago
    • PaulineJ's Avatar
      PaulineJ

      No, never told anything,like everything else I went through medically,surgeries,plus,etc.

      over 4 years ago
    • SteveG's Avatar
      SteveG

      Goodness no! I had base of tongue cancer and had a feeding tube because I could not swallow. I felt lousy all the time so I tried to sleep as much as possible and it was a production to keep hydrated with the tube. Consequently, I had a pulmonary embolism. This was painful and apparently raised my blood pressure. I was put on blood pressure medication but was not told it was blood pressure medication or what the signs of overdose were and stupidly did not investigate the medication myself. Many times I passed out about a minute after getting up, which was even more dangerous since I was put on a blood thinner when the embolism was found. I was admitted to the hospital for the second time in three weeks until somebody figured it out. Moral: read up on the possible side effects when you take a medication.

      over 4 years ago
    • BoiseB's Avatar
      BoiseB

      I had a side effect that the Dr. hadn't thought about. I landed in the ER with the worst headache imaginable, after going through a MRI the Dr. started checking my medications. He found out that in rare cases Ativan can have this reaction.

      over 4 years ago
    • msesq's Avatar
      msesq

      My oncologist gave me copies of the Rx adverse reactions print outs and I carefully researched everything on line. I refused to switch from Taxotere to Taxol due to side effects including neuropathy but that was before they found out Taxotere can cause permanent hair loss (thankfully I missed that side effect). The worst side effects were from Nulasta which was so bad I couldnt move or speak, luckily it only lasted a day. I was only told it could cause bone pain not how intense the pain would be.

      over 4 years ago
    • petieagnor's Avatar
      petieagnor

      Yes, all of my doctors told/warned of the side effects. I feel very fortunate that my doctors communicate with each other. Having a daughter in the medical field also helps, but she only suggest to the doctor while I have the final call. Really blessed.

      over 4 years ago

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