On 4/6/2008
Too Young wrote:
Dear Marge
Thank you for answering me ..... you give me hope ! I have unfortunately had a bad run of luck with doctors and treatment. Through my whole pregancy with my son they missed the fact I had a huge tumour growing inside me. Even though I complained all the time about the pain I was in. They ran a lot of tests but never picked anything up. It was only 3 months after Lachlan was born did they notice I had a tumour. I had radical hysterectomy and debulking etc and then they started me on the paclitaxel/carboplatin which I had every three weeks. After three treatments I was getting the numbness in my fingers and toes so they took me off that and put me on the doclitaxel. I showed no signs of improvement so they then put me on Caelyx, which has only stabilized the cancer it will not get rid of it. One day they say that this will stop working and they have nothing else. I have been to three more doctors for advice and they all say the same thing - enjoy what time you have left. Grrrrrrrr I would love them to be 31 years old with a lovely husband and 18 month old son and told that. The doctors don't give me hope, they won't even think about giving me any more surgery. As they say the cancer is in the fluid so taking out what ever tumours are there already will only lead to others forming anyway. I have been seeing an intergrative medicine woman and she has me on a lot of natural tablets and I have Vitamin C intravenously every week. I dont know what else to do !
Kathy
Sunday morning, 4-6-08
Dear Kathy,
I checked my e-mail this morning hoping that I might have a reply from you. I was not disappointed. :)
I told you about my bad experience with doctors telling me incorrectly (because of the mistake reading dates) that I had a normal CA125. That experience pales in comparison to your lengthy time of symptoms without any doctor figuring out what was wrong.
The first three treatment of paclitaxel/carboplatin you had were probably identical to the eight treatments of that combination that I had when I started chemotherapy. Since they feel they have exhausted the drugs to try for you, would you consider having more treatments like the first three you had? Eight treatments like that were the beginning of the 53 weeks of chemo that saved my life. My next paragraph will be about neuropathy caused by chemotherapy.
I have very severe neruopathy in my feet and ankles from my year of chemo. It's milder in my hands. Someone asked me what made me finally stop chemotherapy after over a year of it, and I replied (half joking) that I decided that my feet and even my lower legs were finally numb enough to stop. I asked my internist/rheumatolgist, who is a full professor who teaches in a medical school, if that numbness meant my circulation in my legs is poor. She said my circulation is all right. Only the nerves are affected. I don't think she let that oncologist off easy for his mistake about the CA125.
This neuropathy is different than diabetic neuropathy that does affect circulation and often causes diabetics even to need amputation. Diabetic neurapathy can also be painful. I've read (and think I recall hearing it mentioned at a support group) that some people think it makes them more susceptible to things such as stubbing a toe. That's not the case with me. Although my sense of feeling is very limited, I still have the feeling of pressure when I place my feet as I take a step, so it has not affected my safety when I walk.
My grip in my hands is not as strong as it was five years ago. However, I attribute that more to to my arthritis than to the neuropathy.
I'm not "into" alternative therapies. I do take 500 mg of vitamn C everyday because my doctor whom I described above thinks everyone should since it's for building resistance in general. However, I can understand your feeling of wanting to search for anything that might help since your MD's are presently of no help. I have never followed any special diet other than one that is healthy for everyone with or without cancer. I don't think food or even mental attitude makes any difference in whether we are cured or not. Mental attitude might make a difference only in that those of us who remain mentally upbeat are more willing to suffer lots of surgery and treatment that might be curative.
The fact the cancer is in your fluids shouldn't mean you can't be cured. My cancer got from my abdomen to my chest that way through my lympth glands where it was in the fluid that asprirated from my chest.
After the more than a dozen tumors were removed from my abdomen, there was still some small spots ( none larger than 1 cm) remaining after the surgery was completed. Chemotherapy took care of those.
Maybe there is something more that you haven't told me about why the doctors had you stop treatment after the three treatments of paclitaxel/carboplatin . Otherwise, if I were you I'd look into having more of them. It's worth being numb to be alive. (That sentence sounds like a joke to anyone to hasn't had cancer, but in your case and mine it's true.)
My husband and I have two grand-daughters, 32 and 34 years old. The older one has a little boy who will be two years old next month. I have written to you what I would be telling her if she had the illness you and I have experienced.
Thinking of you with concern,
Marge