<p>Your posts count is zero because you’ve only posted in the Cafe, which does not change your post count. No worries.</p>
<p>I think it’s great you’re choosing the newest most aggressive treatment. You may regret that halfway through, but I know it worked for my husband, when even his oncologist thought the treatment was aggressive… and here he is, 9 years into a remission.</p>
<p>Posts in the cafe don’t count in your total, as if our amazing cafe conversations are not worthy of the prestige of high post counts :D</p>
<p>Hey Sunrise and anyone else seeking gyne oncology info, I went through a similar experience this summer with the same exact concerns, A forums with some potentially helpful info is hyster sisters dot com, they have a cancer sub forum, I found it helpful in getting ideas for potential questions.</p>
<p>Did y’all hear about the research out of St. Judes on older teens and leukemia? It seems little kids have a great survival rate and adults not so much. When teens are treated as adults, their survival rate is not good; when teens are treated as little kids, their survival rate skyrockets. (I promise that this is relevant.) Teens are typically less compliant and opt for less agressive forms of treatment when given the choice. Little kids are given few choices, and they do better. So sunriseast, it is wise of you (and brave) to choose the agressive treatment. And yes, you can post “EASY FOR YOU TO SAY!!!” as many times as you wish in the coming months.</p>
<p>Glad you’re having a good day.</p>
<p>Sunriseeast, I was so glad to log on after several days away from my computer and find that you are doing well! As someone who had dense-dose chemo for stage 3 cancer several years ago, I would say, go for it, provided the tests show that you can withstand it. My oncologist strongly recommended the dense-dose route and so reluctantly I agreed. But my doc was right. Not only is the regimen more effective, but it’s over quicker. That’s just a HUGE plus for a treatment that’s generally a long haul, and one I didn’t appreciate until things were underway. </p>
<p>Although chemo regimens vary by doctor and kind of cancer, I didn’t find mine nearly as bad overall as I’d feared it would be, having watched several relatives go through it in the 1980s and 1990s. Generally I felt unpleasant the day afterward, and fortunately was able to take the day off from work–I had to go back to the hospital anyhow to get a shot of a drug that stimulates bone marrow. But the day after that I felt fine, and the third day I made a point of going to the gym and working out on the elliptical machine–not a superhard workout, but a moderate cardio program of 30 minutes or so. My idea, or superstition, was that sweating helped to get the bad stuff out of my body.
Best of luck to you!</p>
<p>jingle,</p>
<p>you were lucky to get the dose dense treatment before it became much better known and accepted. I think your doctor was very much ahead of his time. I believe only after the Japanese studies came out officially last year that a lot of gyn oncologists are starting to use this as an option.</p>
<p>I read a comment from a well known gyn oncologist who hailed this finding as the best breakthrough of the year for all gynecologic cancers, and the best advancement for a treatment protocol for ova/uterine cancer in last 13 years or so. The P value for the statistical significance of the efficacy of this protocol was something like <0.001. Now, this is the number I appreciate as a statistician. </p>
<p>This factor alone, that was not part of the current statistics on survival rates based on patients that were dx’ed ten years ago, gives me confidence that I will win this race. PLUS, all of you have have been generous and kind with your good will.</p>
<p>Sunrise, it sounds like you have a great doc. I will echo the same thing. Chemo wasn’t that bad. I took the most aggressive chemo at that time too. I thought it was going to be like a bad movie of the week. But, I never was delayed in a treatment and I worked out the entire time.
Good luck to you!</p>
<p>sunrise - Good luck to you as you enter your next phase of treatment. I’ll continue to keep you in my thoughts. I really appreciate your humor and honesty on this thread. It is so helpful to all of us.</p>
<p>OK. Another wacky cancer humor.</p>
<p>So, in my visit with the doctor, he gave loads of information about the upcoming chemo therapy. Then, I was in a meeting with an oncology nurse who coordinates all the paperwork, scheduling, and patient prep for the chemo phase. I got an earful for all the side effects, what to watch out for, what to be careful about etc. </p>
<p>Last night, we got a phone call from a dear friend who is a ob/gyn in a neighboring state, and she went over all the medical issues too. </p>
<p>One of the common themes was the weight loss issue. My BMI is already at the borderline between underweight and normal for my height, and everyone is trying to tell me how to minimize weight loss. They all warned that food won’t taste the same, my taste may change drastically, and I should eat whatever I can hold down: all bets are off for healthy eating in this phase.</p>
<p>My husband, who has been participating in all of these meetings and phone calls, finally mused out loud during a phone call with the ob/gyn friend…</p>
<p>“Do you think her taste in men will also change?”</p>
<p>My sentiment? “Even if it does, I will keep it to myself until you successfully nurse me back to health” Rather predatory of myself, but, hey, there is something to be said about a survival instinct!</p>
<p>But seriously though, my H is my number one allay in this journey. In this respect alone, I am already beating many times over the odds of survival statistics. He is my hero.</p>
<p>(I was doing web search for chemo side effect issues, and in one discussion forum, a woman posted that the day her late stage ovarian cancer diagnosis was confirmed, her husband of 11 years left a simple note saying life is too short for him to be bogged down with all this, and sailed away to Bahama’s in his sail boat. I did NOT make this up. I will be watching any budding interest in sailing on the part of my husband like a hawk. After all, we live in NJ near the shore, and YES, you can indeed sail away from here to Bermuda or Bahamas, and what not).</p>
<p>Your H sounds like a keeper! My thoguhts are prayers are with you on this next step of the journey.</p>
<p>Sunrise. I dont know my statistics, I knew my stats the first time and it didnt help. I just focused on the chance that it would recur. I believe stats are useful for determining the kind of treatment you need. How aggressive etc… but not on outcomes. Every body is different, every cancer in that body is different. I have been at this since 1994. this is my third bout and second primary. So dont focus on the stats for outcome, only for treatment. You need to turn your statician brain off in this respect. I have seen the gamut, I am very hopeful for you .
It may suprise people to know that many BC survivors hate October. It is a constant reminder. People kind heartedly give you everything pink , dont want it. dont want to be the poster child for breast cancer. Hello everyone I have breast cancer. We feel guilty about this as we are grateful for the publicity and research etc… However, we still dread it. I have many friends with BC who also have other cancers too. All I know is that the research is not far enough for this crappy disease in all forms.
CSN cancer survivors network has been a good forum for me. many people there are very open about their side effects and what they have done to alleviate them. I have found many docs to sometimes understate these effects. While true that some people do very well with treatment, other people experience tougher side effects. Oncs sometimes like to think that its a breeze. I have a great surgeon as well. It brings me great comfort. I have to know I have done everything I can. Anti Cancer is a great book about improving your body terrain. Everyone should read it as it gives common sense guides for prevention.
One great effect of losing my hair was that it grew back curly. I had stick straight hair. It is supposed to go back the way it was, but sure makes it easy to get out of the house. wash, and go.
anyway I am rambling, but we are here for the ride sunrise, I believe positive thoughts and prayer go a long way. I felt like I floated on people’s good will and care. it sustained me. It will be a tough fight but you will come out the victor!!!
P.S. cancer survivors network is supported by the American cancer society,</p>
<p>With respect to food, if you have someone coordinating meals for you, keep her up to date on what sounds good, what you are craving, what sounds revolting, any food allergies. Trust me, no one bringing a meal will be offended if they are told “no broccoli or fish.”</p>
<p>Love your attitude. You are a real inspiration. You and your husband sound like people I would love to know in real life.</p>
<p>I don’t know your husband, he sounds like a fabulous guy and I wouldn’t worry about a sailboat, but if he is like my husband he may be reluctant to accept help. Please speak to him now about this, if a friend offers to bring dinner, say yes, help with laundry etc say yes.</p>
<p>In times of crisis, my DH has been terrible had accepting offers of help. </p>
<p>I have occasionally had to pick up the phone and say, uh he meant yes.</p>
<p>Blessings.</p>
<p>downtoearth,</p>
<p>I tried to reply to your PM to me but since your message quota is full, it’s not letting me do that. No amazing secret in what I meant to say, so I will say here: </p>
<p>again,</p>
<p>thank you SO MUCH. You are an inspiration. I will definitely contact you when I need some support and encouragement.</p>
<p>The whole thing of vulnerability is something I need to work on. I have always been so healthy (not even a headache or common cold) that I had this view of my body as an indestructible fortress. It’s been hard to accept that I am not so perfect 
after all, and let it just be part of who I am, like mere mortals </p>
<p>When I get better, I would like to reach out and help women who are going through all this without any support network. There are women who live alone without an extensive support network who are struggling with health issues. I can’t even imagine how isolating and devastating that must be. </p>
<p>Again, thank you for reaching out to me. Happy New Year.</p>
<p>Sunriseeast: prayers and good wishes for improving health in 2011.</p>
<p>lastminute,</p>
<p>yes, the whole issue of receiving help is a tough one. I have always wanted to be on the giving end, not the receiving end on this regard. It’s not easy for me.</p>
<p>We have very good friends (a couple) who go a long way with us. The wife had a breast cancer a few years back (early stage. cured, I think). When they heard about my condition, the husband told my H the following "sunriseeast is just like my wife. In all likelihood, she won’t seek out or easily accept help. Let her know that the help is NOT for her decline since it’s help for YOU, not for her. When my wife was going through chemo, predictably she said no when neighbors offered to bring dinner and what not. Finally, I had to say “I do all the cooking here in this family.” That was that.</p>
<p>One really good thing that came out of this disease is that I learned to let my guard down. Mentally, I used to be like a bug with an exoskeleton: independent, self sufficient, self reliant - the whole nine yards. I realize now that that’s a form of arrogance. It is also a grace to share your vulnerability with others. OK. I am still learning - this is not easy, but I am making progress.</p>
<p>edit: cross-posted with you, but this advice is worth repeating!</p>
<p>sunriseeast, my sister had late-stage endometrial cancer. Aside from still dealing with lymphedema, which is painful, she has good reports now. Someone asked her recently if there was anything she would have done differently during her treatment (radiation and chemo, using “big-gun” drugs). Her simple answer: Accept more offers of help. She didn’t even need to ask for help. She has a supportive group of friends, colleagues, and acquaintances who tried, but she refused too often. She lives alone, is a private person, and doesn’t like “inconveniencing” others. All of that worked against her. Otherwise, she was pro-active on all fronts, including self-education, nutrition, and building a relationship with her very good doctor and his staff. Take care, keep your spirits up, and let others do things for you.</p>
<p>Prayers for a complete recovery.</p>
<p>An interesting resource for the cancer family is [CureToday.com</a> - Combining science with humanity, CURE makes cancer understandable.](<a href=“http://www.curetoday.com%5DCureToday.com”>http://www.curetoday.com) - you can get a subscription to the magazine, it comes out a few times a year and features all sorts of research info.</p>