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To clarify my earlier post re chemo

Just a quick note to clarify some of what I said earlier. I apologize for sounding militant at times. I wanted to say that things have changed a lot since I981 when I was treated for ovca. I also worked in gyn/onc several years later and was also exec director of a non-profit for women with cancer. I do believe very much that, if possible, it is best to seek treatment at one of the 40 official NCI cancer centers in the U.S.  They participate in the latest clinical trials and have all the newest equipment and diagnostic and treatment modalities. Nowadays, oncologists can tailor chemo to each individual patient, testing what works best against your specific tumor cells. The treatment I was given back in 1981 has been greatly refined now, thank goodness! Radiation can also be targeted to within one millimeter of the tumor, thereby protecting surrounding  healthy tissue from radiation.If they need to, an oncologist at an official NCI cancer center can submit a patient's case file to the National Cancer Institute for evaluation and a second opinion, as was done in my own case when my chemo failed. NCI turned me down for a new clinical trial saying I would be resistant to all further chemo since I had been given the maximum dosage of what was then the most aggressive chemo regimen.  They recommended radiation.  I remember perfectly the exact wording of the letter they sent to my oncologist: "radiation is this patient's only chance for long term remission". If I had not been going to a teaching hospital with an NCI official cancer center, my doc might not have had the option of submitting my case for NCI review and getting such a quick response from them and I might not be here writing to you.  My two children, 8 and 10 yrs old, were my inspiration to fight so hard. We women need to fight for ourselves, too, as much as we would for our families. Your participation in this website is smart! You guys have to be your own best advocates! Be as pro-active as you can about your nutrition and your care. I even brought my own food to my 2 day hospital chemo stays because I wanted to eat only healthy, natural, food, not the typical hospital junk. What good is jello, for heaven's sake, or instant mashed potatoes? Eat natural yogurt - the cultures are important for your poor digestive track getting assaulted by the chemo or take probiotics to supplement, too. Make raw or lightly steamed broccoli salads, eat lots of raw crudites. Make giant salads with a little protein in them but lots of fresh organic veggies. Get a juicer and make yummy juices from carrots and apples and whatever else pleases you. Munch out on berries and cherries and grapes. Get plenty of sleep! Put events on your calendar and look forward to them. Plan on feeling good for that special day and pop that wig on your head and put some makeup on your face and take the time to make yourself so healthy that you nearly fool yourself! Every moment you can feel normal has a positive impact on your health! Yes, I know that nowadays many women wear their baldness proudly. I did not wear a wig at home, but when I was out socially, I got so tired of everyone talking about my cancer. I remember on my 35th birthday celebration  a male acquaintance came up to me and start crying and all I wanted was to feel festive that night! Had I not worn the wig when I went to summer parties and weddings, my bald head would have been a constant reminder to everyone.  Having cancer is guaranteed to make you feel all alone in your battle sometimes - so, wearing that wig allowed me to merge with the crowd. What a nice break that was! Looking in the mirror, puffy face and all, I could still smile and say, not bad, all things considered! Even if you are so weak you have to spend the day reclining on a chaise lounge at barbeque parties, at least you are socializing.  Of course, it also brings relief and joy to your loved ones, your caretakers, to see you enjoying yourself. Seek joy wherever and whenever you can. Eat healthfully. Stay informed and educated about the latest developments. Ask questions of your oncology team. Get support. Ask for help from family and friends. Listen to your inner - follow your instincts about what you need to eat or do or not do. I craved raw broccoli like crazy and back in those days people did not know about broccoli and anti-oxidants, etc. Tune in to yourself. You are unique and powerful.
4 Responses
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523728 tn?1264621521
Words of wisdom, thanks for sharing.  These are tough times for many of us here and any optimism is much appreciated.  
Sharon
Helpful - 0
Avatar universal
Thank you for all the information you took the time to write us, it was very thoughtful of you.
Jane
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822194 tn?1263689103
The bald thing has been a political statement for me. My family and I had portraits done w/ my bald head. If you go to my profile you can see one. It is the preview one...can't wait to get the rest. Thank you again NHGIBBY...you continue to inspire....
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792410 tn?1270315500
Thank you for posting your story.  I have read much online about the benefits of radiotherapy for the treatment of ovarian cancer.  Apparently it used to be used frequently.  The two hospitals I've been to have never even mentioned it.  It's very confusing.
Helpful - 0
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