Progress Update From Annec (Prev. Was May/05)

I last wrote May 16th, asking if anyone had information about fallopian tube cancer but have not heard anything back yet so I thought I would update my situation.
I had a full hysterectomy April 29th for ovarian cancer and was diagnosed two weeks later with fallopian tube cancer instead. I'm now receiving a six-month treatment of adjuvent chemotherapy in the form of carboplatin and taxol, every four weeks, beginning June 17th. The side-effects have been manageable so far. I too lost my hair after the 3rd week of the first treatment and had purchased a wig to have ready. I feel good most of the time, except for low energy for the first five days after chemo, and am meanwhile regaining strength from the surgery (almost 3 mo. ago now) every day. I'm focussing on whole foods nutrition that supports chemo and fights cancer. Any and all hints and info would be appreciated - I'm just feeling my way along through all of this.
Someone wrote about a support group - I'm very interested if anyone knows more about how this is coming along. Please count me in!

My mom was diagnosed with Fallopian Tube cancer on September 2, 2005. She had surgery and is now preparing for her second chemo. I am looking for information too. Doesn't seem people respond much on this site.

Anna

Hello Anna,
I'm glad you wrote. You're right...I haven't received any replies or comments except for yours so either people aren't writing or this is much much too rare of a cancer and is extremely unknown. I hope your Mom's cancer was caught in the early stages and that she's "managing" chemo okay. I'm happy to say that I'm having what is supposed to be my last chemo treatment next month. It's been gruelling but that's why I said "managing". Throughout the whole ordeal, I just keep telling myself that even though I'm having a long list of side-effects, I still have to keep viewing them as manageable. There are a couple of books she might like to read that I find very helpful:
"Fighting Cancer from Within" by Dr. Martin Rossman (his website is also helpful: www.fightcancerwithin.com) and "Women's Cancers - How to prevent them, How to treat them and How to Beat them" by McGinn & Haylock (Fallopian Tube Cancer has a category in the rare cancers section).
The cancer clinic hasn't told me about what happens from here but I believe that I go into follow up etc. I've also been asked to participate in a study about this rare cancer which I agreed to immediately. My best to your Mom. She's lucky that she has you at her side. Anne C

Anne,
I agree that this is so rare that it is hard to find people who have this and are online. I am flying up to be with my mom for her second chemo next week. She is understandably worried about going through this 2nd treatment and I will tell her about "managing" the treatments. I think that is a good way to look at it.

Mom is 71 years old and I think it is hard for everyone but maybe even harder if you are older. My sister, uncle and I have decided that she should never be alone through this so we are taking turns traveling to her state to be with her every day of this entire 6 chemo treatments. If all goes well this will take about 5 months and she will be done by the end of January. I am praying several times every day and hoping for the best outcome.

I will check out both of the books and the website. Thank you for the information. I hope the absolute best for you.

Anna

Anna,
It's very heartening to hear that your family is at your Mom's side through all of this. I too live alone and find it extremely difficult to go through all this alone in my home. Your Mom needs all of you now like probably never before. As one who knows this only too well, the least time she spends on her own during her treatment time especially, the better she will feel, just to know that you're there with her in person. I have very low energy throughout this ordeal and will continue to until months after my chemo. I'm not alone in the world but I am alone in my home. Someone very close to me stays with me during the time I'm having chemo and then for the medication period for the days following and it helps me greatly.
Thanks for your good wishes and your prayers, which I appreciate very much.
Anne

Anne,
I'm glad you have someone stay with you for right after the treatments. Mom and I have talked in length about how there are people out there who do not have anyone to be with them through this stuff. I can not imagine how they deal with it all. I don't think my mom would eat much if one of us was not there to make sure she ate. And the medications can be very complicated when you start out with it all. I made a spreadsheet with all of the medicine listed down the side and dates across the top so we could track what she takes and when she takes it. It has reminders to drink enough fluids, take a vitamin, take her temperature, and other things that could be helpful to remember. I'm a bit of a control freak so this is right up my alley. I feel that if we do everything "right" we will have a better outcome.

I will continue to pray for my mom and have added you in my prayers. Please take the very best care of yourself.
Anna

Hello Anna and Anne,

I was diagnosed with stage III FTC Oct 2004 and have been looking for a message board like this.

The end of Sept 2004 I ended up in the hospital with what they only thought was a ruptured ovarian cyst. The cyst was grapefruit sized and ruptured the fallopian tube when it decided to let go of the ovary. My doctor called me on Sunday night and I thought it was nice of her to check on me. I was in shock when she told me I had cancer and don’t remember much of what she said after that. I do remember her telling me I had to be at her office first thing in the morning and she was lining up an oncologist. I new things were serious when the oncologist asked me if I planned on having children (I was about to turn 43). She told me I might need a hysterectomy. I have since learned, if a doctor says you might need something, it means you will. They are just trying to get you used to the idea.

I had six chemo treatments, three weeks apart, consisting of taxol/carbo mix. I was lucky I didn’t have much problem with treatment. For me it was more inconvenient than anything. My doctor told me that getting back to normal life as soon as possible would help me heal quicker. Of course don’t overdo things and stop if you hurt. I got back on the treadmill three weeks after surgery. I only did a quarter mile on the lowest speed and it took forever. I went back to work six weeks after surgery. I work the night shift and was off the day I had chemo and I would take that night off work. I would be tired for about two days and sleep a little extra and not exercise. I did radiation therapy after work five days a week for five weeks. I got off work at 6 am but my radiation wasn’t until 7:30. I worked out at an exercise room at work until it was time for radiation.

I live alone, except for my two cats, and don’t have any family in the area. I live in Washington State. My niece came from California to help me out before and during my cancer surgery. My sister came from Massachusetts while I was in the hospital and stayed for three weeks until I was back on my feet. I don’t know how I would have survived if it hadn’t been for them.

If there is something you would like to know about, feel free to ask.

Linda J.

Linda Jean,

All I can say is "Wow"! You sound like a very strong person. My mom is taking the same chemo you did every 3 weeks. She is not in any shape to work or exercise. She is retired so work isn't an issue anymore. She sleeps a lot and is extremely tired. She is also very depressed and just started taking an antidepressant. Is this common for cancer patients and does the antidepressant work? I just wish I could do more for her. I feel helpless when she is sad. How are you feeling now? Are you completely back to your normal activity level? Was your cancer started in the fallopian tubes? Does caffeine help with the fatigue? Thank you for writing, Anna

Anna,

Yes, most people would consider me a strong person. When my doctor told me I had cancer, I calmly said “So much for clean living.” I worked law enforcement for years so I have always been good in emergencies and tend to think logically rather than emotionally.

My doctor warned me not to sleep too much or stay in bed all day. She needs to have a reason to get out of bed. It might not make sense but the less you do the more tired you will be. I must admit for about the first two weeks I didn’t do much more than get out of bed and lay on the couch. The first day I tried to get out of my own bed must have taken me 15 or 20 minutes. It became easier every day. It is also amazing how much better you feel if you take a shower.

I don’t know about the caffeine part. I normally drink a lot of hot tea. During treatment I lost the taste for it and it took several months after treatment before I could enjoy it again.

I didn’t have any depression. Maybe a local support group might help. Some place she can talk to people that have been through her situation and she can relate to. It wouldn't hurt for you to go to one for family members. We have a Gilda’s club in Seattle. Maybe you have something like it near you mother. I tend to be a “perky” person and joke a lot. They say laughter is the best medicine. Have her watch funny movies and have people find funny jokes and the like and send them to her. Heck, I even joke about cancer. When I first went back to work I joked I could do anything I wanted because no one wanted to upset and cause stress to the cancer girl.

I think it also is necessary for her to make plans for what she is going to do when treatment is over. Get her to think of the future in the context that she will be a part of it. Me, I planned and went to Vegas after my treatments ended.

I don’t know if you area offers this but I would recommend an image consultant. The information was in the tons of papers the hospital gave me. If you don't find the info, ask her doctor's staff. The woman will tell you about wigs, hats, make up, and resources. It was a free service and she told me I could call her any time I needed to talk to someone. I found it was true that if you look better you feel better.

I also found it very helpful that my sister and I made a list of questions before the doctor visits and she took notes while we were there. She later typed them up for later reference.

My cancer did start in the fallopian tube. I was lucky because of the ovarian cyst. It was benign but it caused my stomach to pooch out a bit. Being a woman I just thought I had been eating too much and not exercising enough. I had been doing inverted crunches and that is probably why the cyst ruptured the fallopian tube.

I haven’t gotten back to my pre cancer exercise level or weight yet. I would get discouraged that it doesn’t seem like I have made progress but I have to keep reminding myself that it takes at least a year to recover. Other than that I am doing everything I did before I had cancer.

Linda Jean

I find that caffeine helps me with fatigue. I am very sensitive to caffeine in general, however it won't hurt to try it. I am 53 years old.