A newbie with a question on ending chemo after 3 treatments

Some of us started on Taxol, had problems with neuropathy and got switched to Taxotere for subsequent infusions and seemed to tolerate it better than Taxol. It's in the same family of drugs as Taxol, so it's as effective. I'm surprised that wasn't included as an option for you. You'd still need to ice your hands and feet with it.

I don't comment too much about my chemo because I don't want to scare anybody away from it but I'll share my experience with you since you asked.

I have UPSC, Stage II and had Taxotere and Carboplatin (Taxotere was supposed to cause less neuropathy). After my first chemo I started to have pain and tingling in my feet and fingers along with vision problems in addition to constant nausea.

After my second one, I was given Neulasta. I felt like my pelvis was vibrating in pain. They gave me oxycodone but it barely touched the pain. The pain in my feet and hands got worse and it was hard to walk. My blood sugar and blood pressure skyrocketed. I was dizzy and started having night terrors. I had to use a wheelchair when I went to the hospital for my blood work before the third one because I could only walk a few steps. I started having diarrhea and more nausea.

The day of my third chemo my blood pressure was 220/180. I thought they would postpone it but they didn't. By then my stomach acid was eating my esophagus and I was hospitalized with esophageal erosion. The night terrors were so bad I was afraid to sleep. I was pooping white. I called my GP for help. My port had never healed and was so infected, puss was running out of it. It could only be used the day after it was installed and finally, my oncologist took it out. My fingernails and toenails started to fall off. I could no longer control my bladder and bowels and had to crawl to the bathroom on my hands and knees since I couldn't walk. I would wake up in the middle of the night and just gag and gag until I felt like my ribs were broken. My skin started to peel off too.

On Christmas Eve, I was talking to our youngest daughter and I started seeing "fireworks" out of my left eye. I looked at a newspaper and the words were moving around and jumping off the page. If I turned my head to the left the room would just spin. I called my GP the day after Christmas and she said to come in right away. She ran all kinds of tests and I sat there all day in the wheelchair and waited for the results. She said first, my liver was failing - that's what was causing the night terrors, the white poop and the blood sugar over 700. Next, she thought I had a small hemorrhage stroke on the right side of my brain and ordered an MRI to confirm it since I was having weakness on my left side, trouble seeing and balance problems. She carefully read through the results of my biopsy after my hysterectomy and asked me if she had this right - this chemo was not curative, but preventative? She said in the oncologist's notes he thought he removed all the cancer. I confirmed that. She said it was the oncologist's job to kill the cancer; it was her job to make sure he didn't kill ME. We stopped the chemo which was to have been my fourth round the next day. I went from taking one pill most of my life - synthroid for my thyroid - to 18 pills a day and I still take 13 different kinds.

I still had to go back to my oncologist because my port site would not heal. He told me he was one of the doctors running a clinical trial using Metformin. He said he could get me in it but I may or may not get it since half were getting a placebo. He said my GP would probably prescribe it for me since my blood glucose had been out of control during chemo (I had a T2 diagnosis for ten years but a normal A1c). She gladly did and since then I take 2000 mg of Metformin a day. There have been times my A1c has dropped to below 5.5 but I just eat candy - LOL! I finally ended up going to a wound care specialist and after six weeks, she chemically cauterized the wound and it finally healed but it's left a lot of scar tissue there.

I asked my oncologist about radiation but he said no, he was saving that if I had a recurrence. So, here I am, over 3 1/2 years later with No Evidence of Disease (NED). I STILL have neuropathy in my feet and sometimes it's really bad. I also have neuropathy in my left eye and the left side of my tongue although those may be stroke related. Two of my fingers are still number - my index finger and thumb on my right hand. I have constant diarrhea, my fingernails and toenails never grew back the way they should, my left eyebrow is missing, I have bald spots in the back of my head, numbers "move" (I have an accounting degree so could no longer do our business' books) and jump around but thank heavens, I can read and write again. My speech is sometimes slow and the wrong words come out but maybe that's just getting old - I'm 66. I have vision problems and my prescription sometimes changes daily. 

I went through extensive physical and occupational therapy which really helped. I'm alive and I have a wonderful life. We retired, moved to Florida and the more I do like playing cards and puzzles, my brain has gotten better. I get tired quickly but then I rest. I don't sleep very good because of the neuropathy pain but then I sleep later in the morning. My husband drives me where I need to go. 

I believe that the fourth chemo would have caused irreversible liver damage and maybe my death so I'm glad I quit. BUT....that doesn't mean you should. I am glad I had a GP that I could talk to and that I trusted to look out for MY best interest.

Good luck!

Love,

Eldri

We all seem to have a strong need to know them in the beginning, but learn as time goes on that they just don't mean that much to us as individuals. Your doctor was so on point with what he said to you and many of us say the same thing here.

Stats are generalities. Numbers can be manipulated to say anything anyone wants them to. Ignore them.

You are you're own statistic, so don't look to them for hope or for reason to worry. Each of us bring so many variables to the table with us when we are diagnosed and studies that gather statistics just can't begin to account for them. They are just generalities and are often outdated and not of much use. 

I was diagnosed with clear cell. Had the hysterectomy with all the other things all taken out on Oct 2/18. I was 1A with clear cell and some serous, slight LVSI. 22 lymph nodes taken out and all clear. I had 6 rounds of Carbo/taxol followed by 3 brachytherapy. I am not doing external radiation. I am 66 and until this I was in good health with none of the things that increase chances for this cancer. It was not easy getting through the chemo, I was out of commission for about 4 days each time, had Neulasta. I went to a good place and they offered me ice packs for hands and feet, 3 toes are slightly numb but not bad. I have had bad aching legs but I have fibromyalgia and I think that doesn’t help! I have a bad ankle that I think needs surgery but I have been waiting to recover from all the chemo etc before I go through that! Honestly, my ankle has caused me more pain than any of the cancer related things.