Carboplatin (Paraplatin)

I think asking what were the most difficult side effects is like asking someone to describe the level of pain they are feeling. Two people can be experiencing the same exact thing yet their perception of it is very different. For me I think I had built up this idea that going through chemo would be the most horrid thing anyone could EVER experience and that was the bar I had set for myself. I was lucky and experienced minimal nausea thanks to anti-nausea medications. I also expereincved some slight neuropathy in my right foot which did cause some long term residual effects. I also had no appetite for 2-3 days after each chemo cycle. I had the tinny taste in my mouth when I ate. I was very tired all the time and just when I felt some energy returning it was time for the next treatment. I think the most difficult side effect was the bone pain. The overall body pain & exhaustion which, the closest thing I can compare it too is how your body aches when you have the flu then multiply it by 10. Emotionally painful was loosing my hair at first but ironically once it was gone I didn't feel as bad as I thought I would. Maybe it was because I was feeling so crummy overall, otherwise I just didnt care. I don't quite know for sure. For me though they were far from easy but I personally felt the side effects were manageable and I knew I had to deal with them because at least for me I had no choice but to have the chemo.

I wish that my physician (who is no longer my physician) had explained the relationship between steroids (the reason for pre-medicating with steroids) and the chemo drugs. I am the type of person that wants to know the reason behind everything. It is important to me to understand why I am taking a medication. I like to know as much as possible about the medication and the possible side effects. (I.e., I am probably a pain in the butt for a patient).



What I feel I missed out on was having an understanding about the purpose of the steroids (to allow my body to take the chemotherapy drugs without having an allergic response).


When I had my first chemo round I was told what doses of the steroids to take prior to my first infusion. I followed the directions carefully and exactly. I did pretty well with the Herceptin and not too bad with the Carboplatin. But, when I started getting Taxotere (Docetaxel) I began to experience pain in my chest and a lot of tightness in my chest. I also began to feel hot all over. Since it was my first infusion, I was being watched pretty closely for any reactions. My nurse slowed the rate of infusion and administered additional steroids (solumedrol was one of them). This improved my situation and I was able to complete the first chemo round.


My nurse (who was fabulous through all of my treatments) told me that because I had a reaction to Taxotere - I would need to have my doctor change the premedication doses prior to my next chemo round. I am sure she made note of this in my file as well. But, she told me to follow up with my doctor about it.


So, I did. I kept asking about the premedication dose, that I was told it needed to be different for the next chemo round. When I finally heard back (you will see why I fired my first oncologist) I was told not to take any pre-medications (other than the emend - anti-emetic - the morning of chemo). So, being the good patient I was (and sadly, not understanding what the steroids were used for) I followed the directions given by my doctor and did not take any steroids prior to my second chemo round.


My nurse administered steroids just prior to my infusion (as they had done before) but, I did not have the proper pre-medications (the steroid pre-medication dose should have been increased, not eliminated based upon my reaction to Taxotere during my first chemo round). I got through the Herceptin okay and also the Carboplatin. But, very quickly after Taxotere was administered, I went into anaphylactic shock and stopped breathing. It was horrifying.


It happened so fast. One second I was feeling okay, the next I felt that same pain coming on and heat and then very quickly I could no longer speak or breathe. I was in a semi-private room, with one other patient. No one else. The other patient was listening to music with ear phones and so I could not get her attention. But, incredibly, her daughter came back into the room (she had gone on a Starbucks run for her mom). And, even more luck, she just happened to be a chemo nurse as her profession. She saw me in distress and quickly got my amazing nurse who literally saved my life. They stopped the chemo fast, administered a lot of steroids and luckily I came out of it. I never saw people move so fast and work so fast. I am so incredibly grateful for the fact that my nurse was so very competent and talented. She truly saved my life.


So, I wish the reason for steroids had been explained to me. If it had, I would have known that decreasing the dose (to zero) the day preceding chemo was a mistake.


When I met with my oncologist (the one who i later fired) my first impression was that he felt I was taking up too much of his time and that my questions were annoying to him.


I also did not like the answers I was getting. I did not like the fact that he made me feel like my questions were somehow irritating to him and that he felt I should just trust him and not question him about why I would be taking one thing versus another. But, I really wanted to understand what I was going to go through.


As a result, I started seeing an oncologist out of pocket up at UCLA. She is amazing. After the anaphylactic shock incident, my insurance offered to pay for the oncologist of my choice (at UCLA) and allow me to continue treatment locally in Orange County under her supervision.


After that I felt prepared and informed about my treatment. I was one of those patients that seemed to react to everything. I had to have very slow chemo infusions as my body just wouldn't tolerate it. So I know that I was not/am not the typical patient with the typical reactions to drugs. But, I really wish I had been informed of the reason WHY I was taking the steroids. If I had, I would have realized that I needed an increase, not a decrease, in the steroid dose prior to the second chemo round. It would have been nice to have avoided the anaphylactic shock experience :)


Fortunately that is past. But, it taught me a huge lesson - to ask questions, even if your doctor doesn't seem to be in the mood for it that day. You are the only person in your body and the only person experiencing what is going on in your own body. You have to listen to that.


My current oncologist is excellent. She relies on me for information about my symptoms and she treats our relationship almost like it is a team effort (and, it truly is a team effort: patients have to cooperate, listen and ask questions and doctors need to listen to their patients and be responsive). I am fortunate now to have the right kind of doctor-patient relationship.


I am still struggling with Tamoxifen. I had a hard time adjusting to taking it. But, I feel that I was well informed about the drug and about other possible options (lupron and arimidex).


I hope this (very long winded) answer is helpful.


Incidentally, I found my pharmacist to be the most helpful when it came to explaining medications, interactions and side effects. I loved my pharmacist! She was so helpful to me!