August 2013 Chemo Sisters
Comments
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Thanks everyone for the kind words, suggestions and support. On my way to chemoscarapy
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hey, LisaSp-- thanks for responding. I feel so lucky with SE. Barely anything. Doing as much preventative as possible. I also am hyper diligent about brushing/mouthwash and hydrating. It is hard to remember to drink so much when at work. Glad all your tests came out ok yesterday. My blood counts were very good too. I really feel so lucky but am cautious and work hard at the preventative stuff. My next infusion is Aug 28-- am two days behind you.
I am having treatment on Weds, nuelasta on Thursday, so that any SE are 'scheduled' for the weekend. We had a trip to NYC planned the week of my last infusion, and I just decided to go.
Newsflash: if you can spend days 3-5 (with SE?) in a hotel, do it! So much better not to have to look at all the things that need to be done around the house and that you aren't getting to. I rested frequently but was up and out alot of the time, and it really helped to have a good reason to choose getting off the couch over focusing on SE. Of course, it is not a choice for all of us-- but it can be and I only want to encourage the newbies to wait and see how they react.
For those of you just starting, I have had just one treatment but I keep telling people it is not like it used to be-- different protocols, different preventative measures, better remedies for SE. And this forum-- they all help to make it a bit easier.
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Prayers are sent for each person on this board. An extra prayer to my sisters who are getting treatment this morning!
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Hey aef! I agree about the hotel trip because its good to relax but also just continue to live your life like you always have and try not to over think. One day at a time is really the way to look at it.
Candi I'll be hoping for you today. I know you've left already but my best advice is to take someone you're comfortable with along to chat with. My husband couldn't be restrained from going and my best friend goes next time. I am surrounded by very supportive people which is so helpful. I think that going with me calmed his concerns and I know it will be the same for my friend Sara.
So my first chemo brain incident! I thought my 1st chemo was the 1st; duh it was the 5th! So it turns out I'm 12 days out from 1st tx.
Hugs to you all especially those at or near their 1st round in the fight. And HVV go with the Immodium. Treat what you have now not what could happen later. And if you are still hesitant call the doctor and ask! -
Still waiting for Chemo to start. T/C. Really anxious.
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Candi, my thoughts and payers are with you today, I was in your shoes 24 hours ago, my first infusion was yesterday and I have to say it was not that bad, I take an anti anxiety in the morning so I got that approved by my MO, for me if I can ahead of anxiety that helps. Drank tons of water and Gatorade yesterday and I did have a slight headache when I was done that got a bit worse later on, some nausea but I have taken all the anti nausea med's as directed. Peed all night off and on and I woke this morning feeling really good. Tummy a little grumbly, all that really sounds good today are fruits and vegi's. keep us posted. hug's and flowers🌹
Thinking of all my other sisters starting, about to start or already going through treatment, may God bless us and keep us keep us safe 🙏
Shary🌞 -
HVV, gosh, I don't know what I would do. It's 3:30 EST so you have probably figured it out by now. Gavinsgrandma, Is that Gavin in your avitar? He's a cutie. I just heard from the oncologist that I went to in Indianapolis for somewhat of a second opinion, since she is a triple negative breast cancer oncologist only. She said that what we discussed when I was there is the same thing she and other oncologists there are recommending to my regular oncologist, who I see on Monday at 1:00. She was to fax the information to him today. She said I am to have taxotere and cytoxen, four rounds three weeks apart, then I will do 6-7 weeks of full breast radiation that includes the lymph nodes. That all sounds like it should knock out something lurking behind the corners of my bones, so I'm ready to start. Every ne is getting a head start on me. My surgery was July 12, so I am ready to get this show on the road. I prayed for everyone today. I knew several were starting their first chemo today. It was good to read what they wrote while being infused. ThisI thread is wonderful. I feel that have already worn out my poor husband's ears talking about this. It's nice to know that you guys are there and understand exactly what I feel. I'm sure next week I'll be back telling of my nausea and headaches.
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Patti, How did your chemo go? Also, I don't know what T/C is. I hope you're feeling well and it wasn't as bad as you expected. I'm hoping you say that because mine starts next week! God bless you and your family today.
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Cutiekool: I start steroids too the day before chemo, they are killing me because they give me energy but I can't sleep, I've only had 12 hours sleep in 4 days and I can't sit still, I have the feeling that I have to keep moving even when I try to lay down. I take my last steroids tonight so hopefully I will get some sleep. I was going to ask the doctor for a few sleeping pills but forgot. Melatonin isn't cutting it. This restless feeling is awful, I hate it. I'm so exhausted and have chemo brain so I can't work and can't sleep. You'll do okay once you know what to expect but actually my reaction this time is different than last time, ooooh it's such a crap shoot. Let us know once you've had your first chemo. When do you start your steroids?
love, Rayna -
Rayna, I take the steroids the 3 days post-unfashionable. They told me to take the 2nd one between 2-4 in the afternoon with food to not be yp all night! Am hoping for less headache tomorrow - tho rather a headache than nausea! We shall see what days 5 and 6 will bring. Am happy to be off the weekend so I can hermit here at home.
Sharonanne, would be interested in that diet! T/ C is the abbreviation for Taxotere/cytoxan which you and I are one, with several others. I meet my rad onc Monday to find out when/ how many rads and surgery timing.
All the ladies who had first tx's this week - we rock! The worst for me was the waiting -ill be more comfortable next time!
I signed up for a Look Good, Feel Better class on sep 9. By then I'll have no hair, lol! For you non-Americans, that's a free make- up, etc., class put on by the American cancer society. Lots of free good makeup, lol! Probably full of carcinogens ; )
I am at the moment blaming every snappish remark on the steroids, tee hee! Next week I will have to change my tune - chemo brain sounds good!
Oh, and the snarky nurse coworker? Next time I saw her she said I looked pale and sickly! The day after infusion#1! I was GLAD to be pink the next day! I am not as pink today, and yes gashgold we have that saying here, " in the pink." I'd prefer to take a pass, but such was not my lot. At least it's a becoming shade ; )
Hugs and blessings on all of us. I 'm glad for your company. -
Carol, That's funny. The makeup probably IS full of carcinogens. Everything else in this world seems to be. I thought that T/C must be Taxotere/Cytoxan. That's what I'll get for sure now. I got the call today and asked what drugs they were recommending. How long before I can expect to lose my hair? You must be having neo-adjuvant chemo. I thought you already had surgery. I go Monday, also, to find out when and what is next. I'm so anxious, but it helped to read that the worrying beforehand is harder than the actual chemo experience. Anything new tears me up. I would rather just go ahead and do it and get it done. The diet I was talking about doesn't plan out meals. It just tells us what not to eat and what to eat. I'll post it after I submit this post.
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RECOMMENDED FOOD LIST FOR TRIPLE NEGATIVE BREAST CANCER (GOOD FOR OTHER CANCERS TOO)LOW FAT IS THE MAIN THING TO WATCH. These two lists are not all-inclusive. You can eat other fruits and veg. like pears. They just do not benefit cancer patients as much as the other foods listed. I am paying close attention to the do not eat list. I try to avoid those foods totally. I love shrimp and crablegs. I had to give them up! Boo Hoo. I've eaten my share and then some in my life, so I guess I can leave them for others to enjoy.
EAT THESE FOODS:acorn squash, arugula, bell peppers, broccoli, bok choy, brussel sprouts, butternut squash, cabbage, carrots, cauliflower, celery, collard greens, spinach, cucumbers, garlic, jalipinos, kale, Romaine Lettuce, mushrooms, mustard greens, sweet potatoes, peas, olives, apples, dry apricots, raspberries, blackberries, blueberries, boysenberries, cherries, cranberries, oranges, grapes, lingonberries, logan berries, marion berries, pomegranates, raspberries, watermelon, brown rice, buck wheat, tartary buckwheat, arctic char, herring, lake trout, mackerel, wild salmon (not wild caught), sardines, BEANS: black, dry, kidney, pink navy pinto red, white beans, MEAT & DAIRY: organic chickens, organic eggs, fermented milk, kefir, low-fat yogurt, organic turkey, CONDIMENTS & SAUCES: raw honey EXCEPT WHEN DOING CHEMO!, horseradish, mustard, tomato paste s, BREADS, NUTS & SEEDS: brown rice, long grain rice, brazil, flaxseed, walnut, chia seeds ground, whole wheat or whole grain breads; BEVERAGES: water, water, and more water, coffeed, green tea (but not bottled, it's loaded w/ fructose), reishi tea, almond milk; OILS & FATS: canola, olive oil, flaxseed oil, walnut oil, dark chocolate (33 g / day or 30% of a day's calories); SPICES: basil, black pepper, cilantro, parsley, saffron, tumeric
DO NOT EAT: bacon, barbequed meats, beef, butter, cheese, cream, cured meat, lamb, liver, milk, mutton, pork, veal, well-done meat, dried herring, dried mackerel, king mackerel, pickled herring, shellfish, smoked mackerel, brown rice syrup, red beran paste, persipan, sugar, soy protein isolate, bitter almonds, papaya seed, alcohol, beer, coffee???, essiac tea, reishi tea, sage tea, wine, yerbamate, sage, wild ginger, meadow saffron, lavender, gravy, guacamole, pesto sauce, pickled papayha, salted shrimp paste, soybean paste, avacodos, fermendted vegetables, fried potatoes, green papaya, corn oil, lard, mustard oil, partially hydrogenated oil, safflower oil, soybean oil, sunflower oil.
On facebook tonight, I saw, for the second time, that raw onions absorb bacteria and that we should not eat a left-over onion. The article said that if you place a sliced onion in a room by your bed, it would absorb bacteria, It claims that if a person has a cold in the house, that the onion will absorb the virus and the others won't get the cold. I am going to try this when my white blood count is low. It can't hurt.
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I have not started it yet. They keep putting me off. Looking now at Sept 6. T/C is Taxotere/Cytoxan. I also agreed to be on the study for Herceptin but will not know for another week if I was excepted. Let me know how yours goes. Worse part is the waiting.
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Hi Ladies,
Today was a great day. No back, knee or hip pain
. I went to a 75th birthday party. I felt a little guilty sitting at the table with my 2 uncles, aunt + 2 cousins and them not knowing that I had a bi-lateral mastectomy and am receiving chemo. Only my brother + sister-in-law knew.I felt less guilty when I found out that my cousin got divorced last year and I only found out tonight when I asked how her husband was doing. I guess people in your inner circle (whether they be friends or family) know more about you than people that you rarely see . . . and it's OK. They'll find out sooner or later . . . a birthday party was not the appropriate place to share my health news.
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@Patty, why are the putting you off?
Sharon, that list looks pretty good. I'm looking for a comprehensive food list for ER/PR+, HER2- while taking chemo.
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Thanks all for your kind words! I just finished first AC infusion today. I chugged water all day, ate Popsicles while being infused, and they luckily found a good vein that made it easy! I was nervous and asked doc for a port but he didn't want to put one in, citing it being unnecessary surgery for someone who is pregnant (he also nixed Neulasta for the same reason). He said we could reconsider one when I go on Taxol, which would be 12 weekly, and after I deliver baby. Since my first infusion went well, I'm thinking maybe I can make it through AC without a port...fingers crossed!
So far so good, I was able to put my son to bed even though I do feel more tired. They did give me a steroid so I'm hoping I can still sleep. I've already started to feel a dry throat so I'm rinsing with Biotene now.
Hope everyone else's weekend goes well!! -
That's great news, Cougar! I'm also not getting the neulasta automatically, only if my counts are down, and even then it wouldn't be until 2 more weeks when I have the next infusion. Not sure why, but ok! I am hand washing and sanitizing like a fanatic at work, lol!
Sharonanne, thanks so much for the extensive list! I dunno if life is worth giving up bacon, though ; ) give up nipples AND bacon?!? Raw honey? well, crud - that makes sense! Good thing it keeps for a thousand years or whatever. Oh and also I did have a surgery first - had the Lump and sentinel node out first. Will have another surgery to remove the right implant and prophy mx the other breast. The rad onc has to decide if the implant is in the way of the rads, so what will go first. Looks like wound healing could be more challenging if rads are first, so ill just have to trust the Good Lord on all that. At least at my NH job the wound care nurse is already watching me like a hawk, and she's GOOD! Blessings surround me. -
Oh, and Sharonanne, I've been told several things re the hair on TC. 10 days, 14th day, and "right after the second infusion." Once mine starts feeling funny I'm cutting it way short, not totally shaved but close. That way no worries, and it's over 100 F here most days, so will not be a problem ; ) of course, that's also why I am not walking a mile outside, too risky right now. Just zoom around my large building.
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Cougar, You give me hope. I am hoping not to have to have a port since I only have four cycles of T/C, then radiation. If I am well hydrated, they usually can find a vein just fine.
Patti, since you haven't started yet, you and I might start the same week. I think mine starts next week since I see the MO on Monday. When my drs office called yesterday, I asked what drugs I would get. Taxotere and Cytoxan. When I heard that, I figured that must be T/C that others are posting. Now I know. Thanks. I'm new at this game, although I am old.
ForMyGranddaughter, What a great day when we have no pain. I, too, was going to keep my health problem secret from my students. I sub at the local schools. My granddaughter came in yesterday and said that a student asked if I were going to sub this year. She said, "After she has chemo." Good grief. That's all it takes. Just one student knowing and the whole school will know even before I get there. Such is life for keeping secrets. The list of foods should be good for all types of cancers. The article I read said broccoli kills cancer cells, and things like that. It said that kale is one of the very best medicines we can take. I made kale chips last night and they were so good, I almost ate the whole batch, which was the whole package I had purchased. You just wash, break up into chip-size pieces, remove the stems, toss in olive oil, bake at 350 for 12 minutes. Sprinkle with seasalt and chili powder. They are crunchy like potato chips, no kidding. I am going to spray the next bunch with olive oil spray because I had way too much oil on them. I'm supposed to be on a low-fat diet.
Rayna, I take 2 benedryl (Walmart brand called Allergy Relief) and I sleep 8 hours. Don't take any closer than 8 hours to the time you want to not feel groggy. I even give them to my dog for itching. Works great. Maybe when I have sterhoids, I might be singing a different tune. I don't know if benedryl will take over if you're wired to do the chicken dance or something like that. Hope the rest of the week you feel just as good. Sometimes, I think it hits people on the 3rd or 4th day, but every person is different. God bless you, all of you.
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Oh my goodness, CAROL, I have two class reunions to attend; one on Sept. 7 and the other on Oct. 12. I'm surely glad I found a wig. I don't feel so panicked now. God bless you, Carol. Keep walking. Find a hill. It gets your heartrate up quicker than walking briskly.
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They are putting me off because I just have not healed enough even though they just did a lumpectomy.
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Sharon eager to hear how yours goes. Like you I am new. So much to learn. I do have a port and they used it yesterday to get blood. So nice and easy. I jokingly told them I may just have you leave this in permanently. I have 6 sessions to do and if selected for Herceptin trial it will be in for a year. Just ready to get on with it.
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Hello Ladies: I hope everyone is doing okay or as close to okay as you can be.
Just a note about the hair loss thing, I am 5 days post 2nd chemo treatment and very bald. I could start pulling out hair on Day 12 and alot easier by Day 15, I had my husband shave my head when I started seeing all over my pillow, It was becoming a nuisance getting in my food and mouth. My family doesn't mind my bald head so at home I don't wear anything. I have found scarves are hot, my favorite is skull caps like bikers wear. I might buy a wig just for outings like supper or something. I didn't buy a wig before my hair fell out, I read somewhere not to and am glad I didn't because I have a ball cap I bought while I still had hair and had it adjusted to fit my head. When my hair fell out and I tried it on, I could fit a finger in the brim (thats how much too big it was).
I also shaved the last few hairs that were hanging aroung because they got caught on the pillow and was uncomfortable. I did notice that pubic hair was the first to go, I'm hoping I will keep my eyelashes and brows. The peach fuzz on my face is hanging on tightly (the hair I wouldn't mind losing) as is the hair on my arms.
This might give some of you a timeline and some don't lose all of their hair but I choose to be bald rather than have really thin hair.
Sharon: Thanks for the tips about Benydryl, I hope it continues to work for you after steroids. I'm a little leary to take something to make me more tired because if the steroids are still preventing sleep, I will be even more tired than I am. I managed to get 4 hours sleep last night so I think I'm up to 16 hours in 5 days.
Love and prayers to everyone dealing with all of this, good luck to everyone who has and will be starting Chemo this next week.
Love, Rayna -
Thanks Rayna for the hair update! It sounds like you still have your brows + lashes. Do you?
It seems like my stomach issues could have come from the raw kale + carrots that I put in my smoothie. Since reading the link that raw foods including honey are not suggested, I now steam my veggies before adding them to the smoothie. I keep the water that I cook the veggies in; I hope it's beneficial.
MAKE it a great day!
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FormyGranddaughter: Yes I still have my eyebrow and lashes.
I was reading about low white cell count and that between Day 7 - 10 that is when we are most susceptible for infection, since I ended up in the hospital because of infection, I checked on foods not to eat and it said that anything like Deli Meats, Suishi, and raw fruit and vegetable (I guess because of pesticides, insects and not being able to clean them well enough) That all vegs should be cooked, so anyone eating raw vegs make sure to clean them very well or peel if you can. So steaming them is a great idea but I don't know that the water would be good, it will contain anything bad that was boiled off as well as the good. Hope that helps
Hope everyone is doing well. -
Patti, I will get back with yous Monday evening after I see what up with my MO. Like you, I can't wait to get on with it so it can be over one day, no matter how bad it makes me feel. I'm going to make me a couple of fleece hats today for the winter. Bald heads and Kentucky weather do not do well together. My brain might freeze. I'm glad there are a couple of people who haven't started yet, like me, so we can share our day to day experiences. Later, Sharon
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Thank you Sharon. Yes it is comforting to have someone else that is just starting. Even if you start before me looks like we might be finishing close to the same time. I have been buying a few scarves. Idaho gets cold too. And not sure my brain isn't froze already though. I Will be looking for your post on Monday. Have a great weekend.
Patti
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Haven't posted in awhile. Today is day 9 for me after treatment and finally able to eat and keep it in my body. Have had two IV infusions to keep me from dehydrating. Went for my blood count draw yesterday and my white cells were great and the red cells shows I am anemic. The white cells being up was thanks to he Neulasta shot. Even though it caused me pain I am thankful it did what it was suppose to do. I can work on the anemia know that I can eat. Will definitely use the food tips that have been posted.
Hair is visible falling out. So next week I will go have my head shaved. Not looking forward to that, but it is one step in the healing process.
Glad to see everyone is doing well or handling and being strong through what they have been dealt. I just wonder does the second round of chemo treatments get any easier with less side effects. For those of you who had side effects the first time or have heard.
This board is wonderful even if I don't post. I just luv reading how everyone is doing. I feel I want to post positive comments to encourage everyone and it has been difficult when you feel like crap. There are better days ahead!! Have a restful weekend!! -
FMG, I still have all my hair after 1 round of T/C and today is day 13. So maybe it'll stay put at least til my 2nd infusion on Aug. 26. Fingers crossed! Anyway I'm set with my wig when it happens.
Sharon thanks for putting that list up of foods to eat and not eat. I noticed beef on there and I think small amounts of grass fed beef is fine. Everyone should only have organic milk, eggs, meat and wild caught fish because of the hormones in all the regular stuff. I really really recommend the book 'Anti Cancer: A New Way of Life.'
It has a specific guide for eating for all of types of cancer. It was wrtten by a doctor/ researcher who discovered he had brain cancer and wanted to know what to do to make healthy lifestyle changes to prevent recurrence. It's available on Amazon. GREAT book.
Enough of my commercial. Ladies, drink, drink, drink. Those waiting for chemo and those during. Flush all the toxins out! Everyone have a great day! -
Tog, sorry you have had it so bad! Diarrhea is hitting me today - day 5, so the DH gets to go the store. We bought a cheap clipper so as to do the hair deed ASAP. Will keep trying to eat, tho I hate bland food. Well, ice cream is ok!
Hugs to all -,it's good to read the upbeat entries, too! Keep Em coming
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