November 2019 Chemo Club
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I'm here, ladies, sorry for the absence. I started working a little more, and just have been busy. I'm actually at my fourth infusion right now, but it's no longer my last. My tumor didn't shrink as much as hoped, so my doctor said that I'll have to do four infusions of two other types of chemo. I forgot the names already, but I should get a print out when I leave today. One of them was platinum based , I remember that. I suspect harsher side effects. I'm just bummed that it's not over yet. This will go into March or April, and than surgery, and radiation after that. It is what it is, but I'm sure I'll have a cry later tonight.
Otherwise, all is good. We saw Bill Burr in concert on Thursday night. We love comedians, and he's a favorite. There's a college football championship in New Orleans tonight and LSU is one of the teams, so the city has been partying for that all weekend. I'm not into sports and even I am paying attention to this. In fact, the chemo center isn't as busy as it normally is. People must have other plans.
I'm going to read back and catch up on all of you.
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OK on February 3rd I'm due to start Cisplatin and Doxorubicin (Adriamycin), is that AC? I'm going to read back through this whole thread to see how those of you who were prescribed this handled it. I refuse to do what I did in the beginning and Google experiences.
The nurse wasn't sure the cycle lengths, but she didn't think that they would be three weeks apart. I'd love to get it done faster, but either I heard three weeks from the doctor, or I just assumed that because it's what I was already doing. I'm going to have to send him an e-mail with these questions. I like to know what to expect. I had my mom with me, but I really need my husband when I get bad news. He remembers everything, while my mind is reeling with, "This isn't my last day? I have four more cycles of harder meds? Why didn't we start with the harder meds first? Do I even need to do this cycle today?...". Of course that's all in my head while the doctor is continuing on with whatever he needs to say, and now I'm only partially informed.
sigh I'm going to find something fun for dinner.
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Hey Dixie02 - glad to hear from you you (i was starting to worry about you)but sorry about having to do more chemo. That really sucks but you need to see it as a positive thing. The goal is to shrink that tumour and hopefully this new chemo has what it takes to shrink it! We are here to support you. You can do this!
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Hi Dixie,
I’m sorry you have to do more chemo! What a bummer!
I believe you have the names and initials correct . I found chemocare.com to be very helpful. It goes thru every drug separately. Hang in there!
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Hi Eigna,
I hope you are continuing to feel better every day and no more hospital visits 😀
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Dixie, Sorry for the bad news. I guess the positive spin is that they are able to monitor it and find a chemo that works better. With post surgery chemo there is no way to tell if it works, and you just hope it does. I will forever wonder if my chemo is strong enough if I have a relapse 10, 15 years from now. ILC tends to be slow and tends to come back much later. I had chemo today too. And will have chemo til March, surgery, radiation, more surgery. So I'm there with you.
Most of the people I read about and the recommendations my MOs gave were to do TC every other week. And Sloan recommended CMF for me every other week, although it was traditionally every 3 weeks. Maybe they are more aggressive in the northeast. So you might want to nail down the schedule and maybe get a second opinion. I was scared to get a second opinion, but my MO encouraged it which is why I stayed with him. Still not sure if that was the right decision, instead of going to Sloan. Too many important decisions to make...….
You might also want to check out some of the triple negative threads or "Dose Dense ACT treatment started October 23, 2019"
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I know that being positive is my only option when the alternative is to do nothing and have it spread. I'm sorry for coming back after a hiatus and dumping this onto you guys. I am doing better with the news now that I've had some time. The first four cycles really went by fast, so this should be over before I know it. Thanks for the support, guys! I mean it. There isn't anyone in my life that can relate to this like you all can.
Charlie, I'm thrilled about your wedding. Keep us updated on your cake decisions. I love cake
Margo, I jumped onto chemocare as soon as I got home. It is a good resource for just the facts. I made the mistake of diving down the rabbit hole the first time, unearthing a lot of horror stories. I'm fully aware of how serious these side effects are, but I'm better off when I'm familiar with the authors personality. I know that I talk too much on here, but I try to be realistic about my experience and tolerance.
JRNJ, today was the first day that I thought about getting a second opinion. My mom had been offering to drive over to Houston for MD Anderson since this began. And, we have a popular cancer center about 45 minutes away. I still fully trust my doctor and his experience, but perhaps somebody else has another option to present for triple negative breast cancer. I just figured that breast cancer was pretty straightforward at this point. We'll see. I'm not even sure how second opinions work, this is my first time with anything like this. And, as you all can tell, I like to be fully informed😄
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Dixie, I don't want to be pushy, I know how much anxiety it caused me, do I go for a second opinion on surgery, wait til more results, wait til chemo recommendation, switch my drs? I told my friends I don't want your opinion on what I should do, just examples of what other people have done and I'll make my own decision. I always wanted to be aggressive, so I stayed until I didn't hear the answers I wanted to hear. I pushed for bmx, although my BS was not on board right away. I stayed with her although not thorough, bad communicator, dismissive, arrogant, rude, new out of school PA was my primary contact and made mistakes and said stupid things, imaging group made mistake on MRI which I caught, not Dr or PA, and she also didn't believe me, PA read off someone else's biopsy results to me "what, I have ductal cancer too" lol. I knew she was wrong, all because going to NYC was daunting. Went to local MO, with intentions of getting second opinion once all pathology and Oncoscore was back. He actually wanted me to get second opinion from his friend at Rutgers. I went. I was not happy with answer, so he wanted to send me to Philly. I said no I want to go to Sloan. He said OK if that's what you need. Then he agreed to implement their recommendation, otherwise I would probably be doing CMF every 3 weeks or if he didn't agree, I was going to switch. I remember thinking in the beginning, a good friend had ovarian cancer, it's so hard. I'm lucky, they have breast cancer all figured out, it is cookie cutter. Boy is that not true. So again, don't want to be pushy, but at this point a second opinion might be a good idea. I had two top female docs with totally opposite "strong" opinions and a local guy that admitted he didn't know what to do with me. My Dr. was very supportive and sent all my files for me, except Sloan wanted my imaging on CD, which I went and got myself and Fed Exd, and they never even looked at it, just the reports. And the places I went reached out to hospital to get pathology slides, because I wanted my slides reviewed. That took the longest, neither dr had the results at the appointment, but both admitted it would not change their recommendation. The pathology did have differences in grade of tumor and pleomorphic status. Sloan leaning towards more aggressive results. Good luck with your decisions, I know how hard it is, I suffered so much anxiety trying to decide on Drs.
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Not pushy at all. I appreciate hearing your story. Like I said, I've never had health issues in the past, so this is new territory for me. And, I'm like you, just tell me the facts and your experience, and I'll do my research from there. I don't think a pilgrimage to far off lands, fighting to be included as a test subject, is where I'm at yet 😄 (I'm sure we've all had a link or two shared with us on new discoveries), but I do appreciate hearing from those of you who are going through this, or have gone through it. I just need a little guidance into what my tangible options are.
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I am sorry you're going to have to go through more treatment Dixie. I hadn't even considered a second opinion but my experience is different than yours where I had surgery first and now the chemo is considered adjuvant care (not primary care which would have been the surgery).
AC is Doxurubicin (Adriamycin) and Cyclophosphamide. It sounds like you had the C but not the A just yet. I'm not sure how they work independently of each other so I can't tell you what you may experience based on my experience as they sound very different, but that might not be the case.
As our wedding will take place in the late morning/early afternoon, we will only have some finger foods and some petit fours but I will set a special one aside for you lol!
My blood transfusion went well yesterday with no adverse reactions. It sure took a long time though. I got 2 units of blood and was at the hospital from 8:30 am to 3:15 pm. I thought I would feel so full of energy I would come home and clean my house. Nope. I was so tired and hungry I ate some chili and watched a movie and was asleep by 7 lol. Today I feel normal which is actually a great way to feel. I had forgotten lol! So my first round of Taxol was delayed but will happen this Friday which means I don't miss a "chemo week". I will get my blood work done on Thursday and I expect it will show much improvement. I will let you know!
Please keep posting your updates when you can.
Take care
Charlie
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I can relate to the awful bone pain. It was relentless and yes, the waddle!! I took all the Claritin, Tylenol, Advil that they would let me and it barely helped at all. I quit after 5 days instead of the 8. Next go round, I’m demanding better pain management.
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It's been 2.5 weeks since my last round of AC and my taste buds are getting worse and worse. As of this morning, I can't taste much of anything. Maybe the coffee but it's a little off too. It's a bummer but I thought I would try something. I've never been a big fan of fruit (I love veggies) or yogurt but someone on this site mentioned they started making smoothies with different ingredients to get their vitamins. I think I will try this. If I can't taste anything anyhow, why not make a nutritious smoothie with all kinds of neat things in it? Any suggestions on what constitutes a nutritious smoothie?
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Hi Charliebug! I put a cup each of baby spinach, frozen strawberries, avacado or banana, plain yogurt, and a cup of juice and blend. You can really throw anything in that you have on hand. I heard from a nurse that we should stay away from blueberries though during chemo. Not sure why. I miss my tastebuds
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Thanks so much Amyhey. I am not a fan of blueberries so it suits me fine to not use them but I love the thought of banana and yogurt and some other fruits and maybe chia seeds and hemp hearts too.
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Round 1 Day 2 Taxol
Good morning! And my, what an early morning it has been for me. The steroids in this one are hardcore. Not that I'm complaining. I feel great! I just hope when the crash comes, it's near a bed lol!. I hope it's not like the crash on AC where I felt nauseous and weepy and all around miserable. So I came home from my first round yesterday and I was feeling pretty wired between the Benedryl and the steroids. I had a nap at 3 pm that lasted 3 hours and then was up for a while watching TV and back asleep again from 8-midnight. That's about where the sleeping stopped lol.
It was awesome to hand over all the drugs I didn't need anymore to the pharmacist to dispose of. I took down my medication schedule from the AC rounds off my fridge since I don't need to take anything on a schedule anymore. If I have pain- I can take Advil or Tylenol. If I have nausea (not likely but could happen) I have some left over Metonia. I still have to give myself the Lapelga (Neulasta) injections on Day 3 so I have Claritin to go along with that. I don't feel like a slot machine anymore pumping pills all the time lol!
Mark and I are going for breakfast this morning and then to the grocery store to stock up. That would not be a good time for a wave of fatigue to hit me but I can always go wait in the car I guess. I will let you know how it goes today
I hope all is well. Keep sending those updates!
Charlie
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Speaking of our at home meds...my doctor said that I didn't need a steroid prescription for the new round of meds. I feel like asking again for clarification, because the chemo that I just finished is considered to be easier to handle than the ones that I will be starting, so not taking steroids for the "harder" stuff is worrisome. I also didn't take a nausea pill until day 3 or 4, and I know that some of you on AC took a pill before the transfusion, right? I know that I won't technology be on AC, but I'm considering it to be a similar experience.
Charlie, I'm thankful for all of your updates. You've made it sound manageable, and I'm scared, so it helps.
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Dixie, Sorry you have to switch treatments and do the harder stuff. We’re there for you. ❤️
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Good morning all
I know you're scared Dixie. I think we all are- we wouldn't be human without feeling fear at this awful ordeal we're going through. I am a firm believer in finding joy where you can and also allowing yourself to feel crappy when you damn well feel crappy. You will get through this though. I would definitely ask your doctor what his/her thoughts are on not prescribing a steroid or anti-nauseants. I assume he/she knows what they're doing though. Do not hesitate to let them know about any discomfort you are feeling- they are there to help!
I am on day 3 of first round of Taxol. I still feel quite well. It's a good thing I had energy yesterday though. I think chemo brain had kicked in again as Mark and I went shopping and I forgot a few things on my grocery list until we got to the check out and I was running around like a crazy person grabbing one thing at a time (couldn't remember all of them at once lol!) and running back and forth to the check out before it was our turn. Then realized we also forgot our grocery bags so had to run out to the car and grab them before the cashier could start packing anything! Phew! Thankfully I only forgot 2 things when all was said and done and neither of them were staples I need right away.
My mother is annoying the crap out of me. Right now I am finding I do not enjoy many foods. Meat is tasteless, pasta (my fave!) has a texture I can't stand right now, so many things are either too sweet or too salty for me and the things I am enjoying my Mom seems to think I need to be careful of. Direct quote "bananas contain potassium and could cause water retention which you don't need right now". Um, what? I have no issues with my heart or any dietary restrictions. If I want to eat a damn banana, I will eat a damn banana. I know she thinks she is helping but honestly, not helping at all lol! I love food and this phase is making me crabby. I hope there is some weight loss after all is said and done because I could stand to lose at least 40 pounds.
Enough whining from me today. I am going to enjoy the rest of my day and my morning coffee. At least it still somewhat tastes like coffee lol!
I hope you all have a good day today!
Charlie
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Charlie, Thanks for being an optimist, I have trouble with that. Lol tell your mom my nurse told me to eat bananas. BRATT. Bananas rice applesauce tea toast. Bananas are super food especially when nauseous.
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Charliebug - I am not a big banana fan. Actually I don't eat many bananas but now that I'm doing chemo i feel like eating bananas once a day 😜. It's mygo to fruit. Bananas are super !
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Charliebug “If I want to eat a damn banana, I will eat a damn banana“ Thanks for making me laugh today! That’s why I love coming here. No one else really gets what we are going through. I went to church today and everyone was saying that I look so good and they are so glad I’m feeling well. They have NO IDEA! It’s the makeup and the wig! I guess they didn’t see me fanning myself with the church bulletin the entire time because I had an hour long hot flash!
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Thanks for your support with my banana rant JRNJ, Eigna and Amyhey! I actually haven't eaten one yet. I was delighted to learn that I can taste Mini-Wheats this morning though. Funny how selective my taste buds are right now- weird!
So the steroid crash happened yesterday afternoon and I was out like a light by late afternoon and all night. I woke up this morning feeling pretty good though. It's great not to feel nauseous. I don't know how much energy I will have but I do need to find something to do to pass the time over the next weeks. I have noticed some mild tingling and numbness in my fingers and toes that comes and goes. Hopefully that's as bad as that gets but I am sure it is cumulative like all the other side effects and might affect my ability to grip things over time. I also have this very strange rash that doesn't itch but has popped up on my arms, one armpit, tops of my feet and the crease of my groin area. I know it's "chemo rash"- no other explanation. It doesn't really bother me but it is unsightly so no going to the public pool right now.
Isn't every day a new adventure? Arggggh
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woo hoo. Just read cancer does not feed off of sugar and you don't really have to reduce sugar as your body regulates sugar regardless and will make it if you don't eat it. They said just don't become obese. Sloan and MD Anderson articles. That made me feel better lol.
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Ha! That's good to know because I like desserts. I also like bananas.
I think that my left foot started developing neuropathy. It's not a strong feeling so I could just be paranoid. It's kind of a bummer that I'm experiencing all the side effects of TC, but the tumor is unaffected.
Otherwise, my week has been ok. My son started taking driving classes. My husband had a birthday. I want to start reading books. It's been a looong time since I've read a book, and I've been watching way too much T.V. since starting chemo. I'll take recommendations if you've got one.
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Dixie, we are all probably watching a lot of TV! Here are a few book suggestions: Where the Crawdads Sing, The Great Alone, Eleanor Oliphant, Before We Were Yours, Educated.
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I picked up Eleanor Oliphant at the library today. I had heard good things about the Crawdads book, but of course it wasn't available. I'll read it at some point.
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Hello ladies. Today i went to a Feel good look better workshop and i had so much fun. It was a hands on makeup workshop and the best part is that I left with a bag of free makeup 😊! I highly recommend it if you have a work shop near you to try it out !
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thanks for the info Eigna. Just went to their website and signed up for a workshop
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That’s great Amyhey! You won’t regret it! I had so much fun!
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Round 1 Day 8 Taxol
Soooo tired. I think some of it (maybe most?) is from boredom and the winter blahs. I just want to nap all the time it seems. Today I am going to force myself to shower and dress and head out to do some shopping just to get out of the house and get some fresh air. Now that I know the steroid crash is the same as with AC, I moved my next chemo appt from Friday the 31st to Monday Feb 3rd as we have tickets to a play on the 4th and there is no way I would be able to make it there if it was day 5 after chemo. So now it will be day 2 and I will still be energetic from the steroids
The Neulasta shot kicked my butt again this time. I've been soo lucky with it, only having bone pain one time when I had forgotten to take Claritin until the pain started. This time I remembered Claritin but it still hit me yesterday. Not sure why but hopefully it won't happen every time throughout this chemo course. Not pleasant...at all.
Appetite is pretty good and I can taste many things that I couldn't a week ago. It's still random and some things are still "off", but it's better than nothing!
This rash I have is itchy but not too bad. I will still ask for a prescription as over the counter cortisone cream isn't doing squat for it. Maybe it will just go away on its own? It started between AC and Taxol so it could just be my body letting me know it's fighting the poison or something- who knows. I wish I had a bathtub instead of a stand up shower. I would love to have a long soak in some baking soda or colloidal oatmeal and soothe the itching and read a book...ahhh.
Hoping everyone is doing well and looking forward to the weekend
Take care
Charlie
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