Ovarian and uterine cancers
Comments
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MJS and BadassMom,
You guys must have some powerful MOJO, after reading your comments about the type of cancer I was all charged up and ready to ask questions. The hospital called this morning first thing to schedule the labs and genetics conversation. Thanks to you, I already have a list of questions to ask, and things to research so I can ask better questions. I swear when I am done with all this I'll have a PhD. in cancer.
Hang in there both of you, and thank you again for all the help.
Beth
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Beth and Badass Mom,
That's just what my chemo nurse said when I asked — we take in lots of fluids during chemo. The IV benedryl makes me a little shaky on my feet. so the chemo nurses usually want to walk me to the bathroom, even though it is just a few feet away.
When I Iost my hair the first time I ware a wig primarily for privacy and control over when and if I wanted to share my diagnosis. It was a shattering piece of information. The very few times that I wore a hat rather than a wig, I was on the receiving end of unwanted pity and curiousity. Even though it was winter, with hats it was still obvious that I was bald, except with the chemo hats, which themselves were cancer flags because of their odd shapes and coverage. On two of the three or four occasions that I wore a hat instead of a wig to a restaurant, when I went to pay my bill a stranger had paid it for me. So much for privacy. I know it was well-meant, but it taught me that if I wanted to avoid speculation by strangers, a hat was not the strategy for me. The other reason I wear a wig is for work. I have a public-facing job, and the wig keeps cancer curiousity and drama out of my workplace and keeps the focus on the work with the public part of my job. I don't wear one at home or with my immediate neighbors or when visiting friends.
You are so right, Beth, about small worlds. Before one of my first chemo blood draws a few years ago, I had a melt down in the infusion center — my only public one ever — when I realized that the scheduler had mistakenly made a regular rather than port draw appointment. Before the port, it had sometimes taken for or five tries before they could get a vein. I just couldn't face one more thing, and I started to cry when I was talking to the scheduler. A few days later my kitty-corner backyard neighbor told me (in a very nice and kind way) that he had been at the center that day for his own infusion for lung cancer.
Good luck to both of you with the neuropathy prevention/treatment. I'm not sure if I've already said this, but for me a key strategy has been alpha lipoic acid. It was one of several things my gyn/onc and I tried, and it was the only thing besides acupuncture that worked. I have continued to take 1800 mg daily (three 600 mg pills). It can be hard to find the 600 mg pills, so I get them from Amazon. and when I get lazy about reordering or taking them, I'm reminded by a kick of neuropathy after a few days.
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I had endometrial cancer stage 1 so they kept my ovaries during hysterectomy, 10 months later I had a CT that revealed ovarian cancer (same type endometroid but in a setting of endometriosis and they believe a separate cancer) that debulking surgery was staged at 3b but later became 2b when final pathology came back. I ended up doing chemo carboplatin and Taxol which is common, I did the scalp cooling, then put on letrozole to take away any remaining estrogen (still on it). Vitamin B 12 and 6 helped with neuropathy for me. Best wishes to you
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Day 16 and a noticeable increase in the hair on my brush this morning. Rather than dwell on it, I vacuumed. My mom lives with us and has been losing her hair due to her age for a couple of years, so there will be more hair on the floors between us, not unlike living with pets that shed.
Someone here mentioned taking supplements against the neuropathy. My doctor suggested 30 grams of Glutamine (15 twice daily for the first 4 days only), Vitamin B6 100 mg daily throughout, and Alpha-Lipoic-Acid (ALA) 600 mg daily throughout. We found all of them easily at the local GNC Health store, but you can also get them online from GNC. They are expensive, but worth it if you can find them- at least based on my own experience so far, and what the nurse told me when they gave me my "cancer binder". We also picked up protein powders in both chocolate and vanilla for when I don't feel like eating or to get protein when/if I get mouth sores. I love to put the vanilla in a morning smoothie. My favorite combination is 1 handful of Kale (I buy triple washed and wash it again, then dry and freeze in sandwich bags of one serving), pineapple (about 1/2 cup) fresh, frozen, or canned all work. I don't like the taste of Kale, but the pineapple and vanilla completely cover it. That way I get a green leafy, fruit and protein. Other fruits that I have used and work well include cherries, mixtures of berries, peaches, and apples. I suppose grapes might be good too. I would skip the citrus family as they can be tart like the Kale.
The chocolate is for adding to milk or milkshakes. It's fine on its own with just water too. Almost like a treat- given that it is chocolate.
I lost 8 pounds the week after chemo- just from not having much of an appetite. I have put most of that back on now. I definitely could stand to lose a lot of weight, but that's too much in one week. I am trying to be sensible, but also not obsess. If I have learned anything from you folks, it is to be kind to myself, not stress, and take it one day at a time.
Best to all of you.
Beth
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MomSchooling,
Thanks for the confirmation of B6 and B 12 too. Did the scalp cooling work for you? Sorry to hear about a second cancer and surgery. Being over 60, even though they didn't suspect cancer at the time, they took everything to be safe. Which means no more surgery (we hope). Later after the lab tested the ovaries and uterus they found cancers in both my left ovary and uterus. My chemo Carboplatin and Paclitaxel) is for any cells left over. CT scan showed no other tumors.
Beth
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Hi Beth,
How splendid that your doctor and care team are so up on supplements. I tried all of those, and the one that I kept taking was the alpha lipoic acid. What I have learned over time is thatt different supplements will work for different people, so the fact that the others didn't work for me has nothing to say about whether they will work for you. I think you're being smart to do everything that your doctor and care team recommend. The recommendation for me was 1800 mg of Alpha Lipoic Acid every day, rather than 600, but you should, of course, follow your own doctor's recommendation.
I'm sorry you are shedding hair. That stinks. I hope it grows back fast. Like you, I lost weight during chemo. For me it was fear and anxiety and sadness that made me not interested in eating. I lost about 25 pounds, which I could well afford to lose. It stayed off, although I'm at risk of gaining about 5 lbs this time, since I'm pretty weak and not as active as I usually am. Weirdly, I am not at all tired, just weak, which I think is mild anemia from the effects of chemo on red blood cell production. I expect to be back to normal within a couple of months after my soon-to-be last chemo infusion.
Take care. I hope the next one is easier.
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Hi,
Yes, I am grateful for the scalp cooling. The most important thing about it is to be prepared for shedding regardless and adjust expectations, I still experienced breakdowns in the bathroom over hairloss especially the first round. I kept about 50 percent of my hair on my crown and lost very little elsewhere so I was able to hide by using clips etc.. until the crown part grew in a couple inches. I was 48 with no sign of even perimenopause and the doctor said keeping the ovaries was what I was supposed to do if all looked good. Unfortunately, ovarian cancer can spread very quickly, even low grade like mine, so it ended up deep in my pelvic sidewalls and some spots on mesentery, they took my omentum. I would lose several pounds with each chemo first week, but then gain it all back and more the following weeks when I'd become an eating machine. I found eating small meals all throughout the day was most helpful vs larger meals. My main problem was gastritis which developed rather severely 3 weeks post last chemo. Neuropathy went away shortly after stopping chemo. I am finding letrozole maintenance harder to deal with than chemo tbh, I have had numerous breaks because I couldn't take the side effects, then I felt all the cancer symptoms return but after 2 ct scans and numerous ca 125s with nothing found we assume I am still NED? Needless to say I am now regular again on taking that medicine and just dealing with the effects. Will you be having any post treatment medications?
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MJS,
I totally get the privacy thing. If I were still working I might also go the wig route. I worked with kids and teachers, and wouldn't want to have my cancer be a distraction. Children can be freaked out by things like that too. I once had a student who didn't want to sit next to me because I had poison ivy, she thought she could catch it from me.
I never thought about how it might feel like an invasion to have someone notice and pay for a meal anonymously. I imagine, as you say, people meant well. I can see my husband and I doing something like that, not intending to be intrusive but saying we noticed and cared about you. Of course, if you are in the restaurant in the first place you can afford your own meal. Maybe it's like thinking about ways to allow friends and relatives to help. When people care, even strangers, they want to do something, anything to help. Given that it happened so many times you either live in a wonderful town, or it was at the same place each time and it might have been a regular or someone on staff. (Just imagining here, I like to create "scenes" for a book I will probably never write. )
I am struggling a bit with the privacy thing too. I went out to lunch with a friend the other day and when the waitress asked about lettuce on my sandwich I heard myself saying I can't have that rather than no thank you. Lettuce is a risk given that it's hard to clean, it often has salmonella, and depending on the place, it may be handled by many who don't always have clean hands. I don't eat it out. I suppose because I am new to this I am super, (too) careful. In addition to the cancer and chemo, I am immune compromised to begin with as I don't have a spleen. Salad bars and buffets can be troublesome for my system even before all this. All that to say, I don't want everyone in the universe to know, but if people are paying attention even a wig might not ensure my privacy. It's such a funny world we live in. Some people care too much about others (in a good way) and others don't care at all.
Here is to a long life full of people who care, even if they do the wrong thing, right?
Beth
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We haven't talked about post Chemo treatment or anything yet. Second infusion is next week Monday, and genetic testing this week. I hate that information trickles in as more tests are done. I suppose better to start with a basic protocol and then customize as we get more information. With cancer the worst thing you can do is nothing while waiting for more information.
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hi, ladies.
in my experience I have been more open to sharing about my diagnosis and treatment. I do work in healthcare with adults and pediatric patients. I wear a head covering with the kids because I don’t want them to worry. With the adults, I share that I’m on Chemo and don’t have any problem sharing that I have ovarian cancer. Even with my friends, I want them to know. We all need to listen to our bodies. Every time I share my story there is someone listening who might benefit from knowing what to look for. When I was first diagnosed, I asked a friend to check in the neighborhood and see if anyone had had ovarian cancer that I could talk to. No one even knew anyone. My patients are on dialysis and I see them every week on an ongoing basis, so it’s not folks I see once or twice a year.I have connected with the gynecologic Cancer support group through my cancer center. It has really been eye-opening for me. It is online and you can share a snippet of your journey or not. I really found it helpful to have a place that I can ask questions. Actually, the first session I attended people were talking about wishing they had known to use the estrogen cream earlier to avoid discomfort especially during sex. I think that was especially important information since I had just had a radical hysterectomy.
We’ve got this!
Susan
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Hi Beth,
I think you're really smart not to eat lettuce and other raw vegetables at restaurants, as it seems that salad ingredients, herbs. and raw vegetables are increasingly becoming sources of salmonella and other food borne diseases. I know that, but this time I am more careless than I should be. I'm going to take you as a model and be more vigilant.
I often pay for meals for people serving in the military. The young ones aren't paid very well, and it's an easy thing to intercept a waiter or pay the cashier on my way out. I wouldn't do it for someone with cancer who had her head covered, because I wouldn't know whether or not she wanted to be "out" with her diagnosis. By and large, I think with any illness or difficult life situation, people should try to take their cues from the person they want to help. A principle in the field I was in for many years is that something is not helpful unless it is perceived as helpful by the recipient. But I think cancer — others' cancer, I mean — makes people uncomfortable or even afraid, which leads to a lot of unhelpful, unwanted "comfort" and advice. A colleauge, for example, brought me a big bottle of carrot juice with tumeric from a health food store, because she read on the Mayo Clinic site that it was a cure for cancer. It was so kindly meant that I just thanked her instead of saying "gosh, I wish someone had told me that before I started chemo." One of the things I got really tired of was unasked for opinions on hair loss "it will grow back" or — my favorite — "it's only hair." I always wanted to respond with, "Oh, well, then, I invite you to shave your head …." : )
Take care and fingers crossed you have an easy week next week.
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I'm so sorry you recurred. It's really hard to tell people you love / who love you about a recurrence, especially if you were not expected to recur. The way that worked best for me was only to tell people who had to know, which of course, your daughter does. One thing I have found helpful with the people closest to me is to let them know that with all the new treatments, cancer is becoming more like a chronic illness like other chronic illnesses. I don't know if that would fit the circumstances of your cancer, but it has helped reduce the worry of my friends and family.
Good luck.
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Yes it's frustrating, I remember losing my mind waiting on final pathology. My genetic testing came back before chemo though.
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wlnevada,
That's a hard one. If you are close your daughter will probably pick up on something anyway. In my experience with other topics and adult kids, both from the kid and parent perspectives, what we/they imagine is almost always worse than what is going on. Simple facts and then time to process would be my suggestion. Isn't it funny that even when we are the ones who are ill, we worry about how others will take the news.
Beth
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Friends
I think I am mellowing with this double diagnosis. I was scheduled for Blood draw and the "Genetics Meeting" this morning. When we arrived we were told the appointment was at another site 90 minutes away. I arrive early but not nearly early enough to make it to the other location in morning rush hour traffic. I was annoyed because I had specifically asked if the appointment was on the same floor and suite where all my other appointments had been, and had been told it was. Pre-cancer Beth would not have been so calm, or able to ask questions and reschedule without anger and resentment. I didn't even get mad. My husband, ever my protector, was livid. But we have an agreement, he doesn't go off leash until I give approval- he understands that I need to be in charge as much as possible.
The new appointment is Tuesday, which is a quick turn around, but Monday is my next treatment. No one could answer if the blood they need for the genetics testing should be taken before my treatment on Monday. I left them to figure it out by Monday. Then I get a message confirming the appointment for Tuesday- in the correct city, but an hour earlier than we had set if for while I was standing there this morning. I know people make mistakes, but it does shake one's confidence.
I find my response to stress now is to nap or clean something, or both. Raging and fuming are things I have no spare energy for, which I guess is good?!
I am setting all this aside and looking forward to a rare visit from one of our adult children. I anticipate a wonderful weekend. Wishing you all a great weekend too!
Beth
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