Feb 10, 2018 11:52PM rljes wrote:
Did someone say VODKA? mmmmm Bloody Mary... that's my glass half full
Regimens, side effects, and support from others going through chemo.
Posted on: Oct 24, 2017 11:41PM
Hey all! I love these threads I have seen, and since I will be starting in November (just around the corner) I thought I would get one started. It took me a long time to come to the decision to do chemo (stage 1a, Node negative) but because I had an Oncotype of 25 and a High risk Mammaprint I decided that I needed to just go for it. I start 4 rounds of TC on November 6th, and decided not to go with a port. I am going to be using Polar Ice Caps too, to try and preserve my hair. I am 33 and have a lot of life left to live. I can't wait for all this to be over, and I am so grateful that I do not have to do it alone. I'm sure that most of my fear will go away once I have gone through the first infusion, but right now I am pretty much terrified about how it is going to effect me. I am an education coach and I work in classrooms daily, so I will not be able to work while I am going through treatment. It makes me sad! I love the work I get to do!
Anyone else starting in November? Let's support each other!
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Feb 10, 2018 11:52PM rljes wrote:
Did someone say VODKA? mmmmm Bloody Mary... that's my glass half full
Feb 11, 2018 12:14AM Meowmmy65 wrote:
I have absolutely no bone or muscle pain from taxotere. As long as I can keep the nausea under control, I'm good!
Feb 11, 2018 12:32AM - edited Feb 11, 2018 12:44AM by Orangedaisy
Hope, I had some bone pain from the Taxotere, called the on call provider and they fixed it. Told me to take steroid pills for two extra days. No muscle pain, just stiffness in my legs, but bearable. Mostly the fatigue and brain fog bothered me for a few days. You will survive, and figure out how to manage your SEs
I am so tired of my swollen ankle and foot, I want to scream. My legs are better, but I can’t seem to lose the last of the fluid in the left foot. I’m tired of the discomfort.
I bought calcium, D2 and K2 supplements today to counteract bone density loss the AI may cause. The AI prescription arrived today. I guess I’ll start it tonight.
My 4 week post chemoblood work showed that I was almost anemic. WBC a little low too. That explains my tiredness. That didn’t happen during chemo. It continues to affect us for quite awhile. I still look bald, and I’m impatient for hair. I think my attitude is worse now than it was during chemo. There isn’t a back to normal switch, is there? Sorry for the complaining post.
Feb 11, 2018 01:26AM klvans wrote:
Hope99 I just finished my 4th round of taxotere. For me my infusions followed a very predictable pattern. I feel fine the first 24 hours afterwards. I don't feel well on days 2 & 3, but each day I feel better. Today is day 5 and I mostly feel myself again. On days 2 & 3 it is more tiredness and upset stomach than anything else. Overall for me it was doable. I haven't had swelling. I have had some muscle soreness but it goes away pretty quickly. This round I haven't had to take any medicine to cope with side effects. I drink lots of water and get my rest. It's different for everybody, but for me taxotere/chemo treatments settled into a predictable pattern that I could cope with. The best thing about taxotere is that it's an effective anti cancer drug. I tried to think of it as something that was helping me more than hurting me. Take care. You will get through this.
Feb 11, 2018 02:17AM frozentoes wrote:
Ok, ladies, I am all done with my 12 weekly Taxols! Woo hoo! Next Tuesday I start the dose dense AC for 4 treatments. Those who’ve done AC, what was your experience? Help me prepare
Feb 11, 2018 05:15AM - edited Feb 11, 2018 05:23AM by mkn86
blair, nonahope, klvans, and everyone in the november thread, thank you for the encouraging and heartwarming messages. 💕 i hope i can be as brave and strong as you are. i never really expected that surgery would be where things would go downhill. and i truly never had any body image issues before all this. of course i am exerting effort to not be stuck during down days. i trust the people around me now will see me for me despite whatever else is removed. being on this forum is proof that what is inside each of us is what truly matters. How else are we moved to support and see beauty in people we have never met? i just hope that eventually i can look at those scars and see ONLY the good things about it, like getting rid of my rogue cells, and saving my life. :)
ultrasound and a mammogram tomorrow. i am more curious than hopeful about the effect of chemo on my tumor. and see also what the plastic surgeon says. initially the decision was they'll need tissue from elsewhere to close up the incision from UMX and it cannot be just a skin graft otherwise it won't hold up well during radiation. so i have asked them to pick a low risk donor site if needed so i can focus on UMX healing and get through rads. reconstruction, maybe later... once i get past high risk years. if at all. i am exhausted from being the patient and i just want to be healthy again and be out and about and be able to enjoy being at home instead of dealing with cabin fever.
I have started drinking decaf green tea with lemon and turmeric. maybe more as a security blanket between chemo and surgery. and thinking of making a giant pitcher of that that i can drink through out the day.
i went to run errands with my dad last friday and it was less than 2 hours of (brisk) walking in a tiny mall to get the errands done but it wiped me out for the rest of the day. i was awake until the evening but i felt tired and fell asleep at 930pm. but i was also able to make soup for dinner so still happy despite still not having energy.
meowmmy and rljes, PASS THE VODKA! haven't had a drink since all of this started hahaha! (frankly i wouldn't mind a joint at this point)
tina, i hope the lasagna has kept everyone happy!
magari, happy grilling party!
orangedaisy, i wish there was a back to normal switch too
kate, i love cooking and cleaning and was really frustrated when i had to ease up on them too. made me grumpy and i felt like i wasn’t achieving anything resting all day.
hope99, i had taxol instead of taxotere but they are derived from the same family of treatment drugs (perhaps the same plant even). I'm not sure if my input will help. but taxol was more tolerable for me and nothing to be worried about. i had even more energy to do things (to worry about things) when it was just taxol without the carboplatin.
frozentoes, congratulations!!! 🎉🎉 AC, i had epirubicin instead of adriamycin. if you consider infusion as day 1, I was tired usually day 3-5 after infusion, taste buds busted day 3-7, mask needed to wear them from day 4 to day 10. I had to take Emend from day 1 to day 3 and also Metoclopramide from day 1 to day 3. Since there are post chemo meds on these days, i also took Esomeprazole day 1 to day 4 just to help with acidity if any... otherwise i avoided hyperacidity by avoiding acidic food during these days (coffee, tomatoes, citrus fruits). And then day 5 onward i slowly reintroduce them back to my diet.
SUn is shining and the air is cool today where i'm sitting. :) i can hear birds chirping outside the window... late risers as it is 11am, and i can smell lunch being prepared (fried milkfish marinated in vinegar and garlic probably with steamed aubergines and fresh tomatoes). Tonight it's my turn to make dinner: chicken with bell peppers and onions in teriyaki sauce with steamed mustard greens and rice. i haven't been cooking throughout chemo and i'm glad i can slowly ease into it.
Have a good weekend everyone! :)
Feb 11, 2018 06:04AM Blair2 wrote:
Kivans, Frozentoes - congrats on finishing up chemo treatments. I’m glad most of you have not had taxotere side effects. I think it did a number on my back. It seems to get blamed for everything. Kat, I hope the mammogram and ultrasound check goes as well as expected for you. It’s always nerve wracking to go through these checks. It sounds like you are under good care.
Thursday was my last back pain pill, and my last muscle relaxer was this morning by my primary’s prescription, but now I’m back on a different one prescribed by OM. I’m still very tired (maybe due to pills) and I’ve lost 2 lbs. this last week from loss of appetite. I also run an afternoon fever of 99.8, then it disappears by the time I go to bed. Anyone have this happening with low grade fever on and off? I don’t think I would have any infections. This has been going on since treatment 3. OM was not concerned unless it went up to 100.4. My ankles didn’t swell as bad tonight, but I really wish I would pep up. I can’t understand why my last treatment hit me so hard. I sleep like a rock, so I get plenty of rest, but absolutely no energy during the day. Last night my back tried to bug me as I changed positions, but I’m trying to ignore it. (Not as bad as it was prior to pills). However, this and the fatigue has got to go away! I’ve got things to do around here, so behind on physical jobs- ugh!
Feb 11, 2018 01:15PM - edited Feb 11, 2018 01:16PM by SDK8
Blair2 I think I am having these fevers as well. Not fun. I have themall through the night too.
Anyoneone else having hot and cold flashes? I am having it continuously for the last week or so, after AC and when I started Taxol. I also have vibrations in left foot. Sleep does not come easy and lasts 4-5 hours. Tylenol PM stopped working for me.
mKN96, best of luck on your exams tomorrow. Lots of positive energy your way 💕
Feb 11, 2018 03:25PM nonahope wrote:
Frozentoes...CONGRATULATIONS!! Wishing you the best on this next leg of your journey.
Kat...Hoping for great results from your mammogram and ultrasound!
Blair...Hoping you get your energy back soon. You've got to be so frustrated.
I had my scans on Friday. Hoping I don't get a call with bad news. My onco has called me from his cell phone with bad news...he doesn't wait around. So, I don't want to see his name pop up on my caller ID. I will see him on Thursday and, hopefully, receive good news.
Feb 11, 2018 03:35PM mkn86 wrote:
Thanks SDK8! i experienced that! chills and hot flashes at the same time. it wasn’t fun. i’d be bundled up with two flannel blankets but my head would be sweating and then i need to put a beanie or something over it because the swear makes it colder mine started somewhere around infusion 10.
Thank you Nonahope! keeping my fingers crossed for you too. :)
klvans, was that your final infusion? congratulations!!! 🎉🎉
Feb 11, 2018 04:45PM Meowmmy65 wrote:
Yes to chills and hot flashes!
It is encouraging to hear people finishing phases of treatment and moving onto the next. This is quite a journey.
Kat - I am not surprised that the surgery would be harder to manage psychologically. Breasts are an integral part of our identity as women. Take care of yourself. If you think counseling could help you with this transition, do it! There are lots of women here who can offer support, but each of us reacts differently. It's okay to feel sad, frustrated, angry... Or whatever feelings you have. Just know that you will get through this with the help of friends here, and friends and family around you. ❤️
Feb 11, 2018 06:44PM klvans wrote:
Hi Kat. Yes, it was my final infusion so soon I will be planning for radiation. I still feel all the chemo drugs roaming through my body. I will be so glad when they make their exit. I hope you are doing well. I think it's natural for surgery to bring its own set of anxieties. I like Meowmmy's words. She had some good insights. Counseling is something I think I may explore for myself. Taking care of ourselves is so important. Hang in there Kat. You will get through this.
Blair I hope you get your energy back soon. You have had a rough time and really deserve a break.
Nonahope praying for good news for you. You are so attentive to everyone on this board.
Thank you everyone for your warm congratulations re completion of my infusions. I appreciate all the kind thoughts and support.
Feb 11, 2018 09:03PM rljes wrote:
Oh what a night. My bone pain in my left hip keeps getting worse and now has spread to my other hip. My MO called and said clean MRI, so go to my Rheumatologist. In other words - deal with it. No amount of pain meds helps. I literally have knots in the back of my upper thighs. Walking makes it worse. Anyway, thanks for letting me vent.
Klvans & Frozentoes - Yeah You on last infusions!
Chills & hot flashes at the same time - oh yes. I change clothes all night long. someone had said keep a stack of t-shirts by your bed - yup. I thought the Hot Flashes were gone. wrong. they were just taking a little time off.
SDK8 - I can only sleep maybe 1-2 hours at a time because of either the hot/cold flashes and bone pain wakes me up all night long. Nothing helps - not Ativan, Ambien, Melontonin, Unisom or Tylonal PM.
Blair, I just wonder if you and I are just the unfortunate ones that are experiencing the Bone Pain from Taxotere. Along with the bone pain, my upper back thighs are tightening and knotting. Sounds like your back pain.
mkn86- I drank a bloody mary and a beer last nite - I'm a cheap date now. ha. I was hoping to dull the pain, didn't help. Not doing that again. Bad habit for me to get into. (a joint would diff help - wink)
Orangedaisy - I saw where you posted your MO extended your steroid pills 2 days to help with the bone pain. I tried that the last 2 rounds. Unfortunately didn't help me. I so glad it help you tho! :)
Take care everyone, Rj
Feb 12, 2018 03:36PM - edited Feb 12, 2018 03:37PM by Blair2
SDK8 - the low grade fevers are still happening every afternoon, and 99.8 seems to be the magic number. Why this is going on is beyond me. It starts at around 2 in the afternoon and is gone by 7 or so in the evening. It's clockwork.
Nonahope - hoping the call you receive from your OM is a good one. I know the wait is driving you crazy. My blood pressure would be sky high waiting for the news. Keep us posted - good luck!
Rljes - yes, you and I have had the worst time with bone or muscle spasms. I'm beyond hot or cold flashes, but for a while I was having to warm my feet and hands with the heating pad. They just didn't warm up for the longest time. Now that our weather here in FL is warmer, I haven't needed the heating pad. It's probably just a circulation problem due to old age for me. I wish your hip pain goes away - it has to be painful - just isn't right. I know the frustration you have with these doctors not finding the cause. I think Taxotere sucks!
Well, since my pain pills have stopped, I am definitely experiencing more pain in my back. I found an older blog of chemo patients complaining about their on going back pains, so this is definitely a side effect caused by chemo. I don't understand how my cancer center can say it's not typical. For as many years as they have existed, they act like the chemo drugs have nothing to do with it. Surely I'm not the first one to have back pain issues after treatment there.Anyway, I'll monitor the pain level, and if it worsens, I might call my cardiologist and ask how to be careful with NSAIDS, if I need to keep taking them. Also - new aggravation is that I have this pesky cough. Not sick, it's just this phlegmy tickle type crap in my throat that makes me cough off and on. Maybe allergies - not sure as I don't have many allergies.
Tomorrow is my afternoon visit with the radiation oncologist, and will learn what happens next.
Feb 13, 2018 02:09AM mkn86 wrote:
mammogram and ultrasound done. thank you for wishing me luck everyone! :) i have an appointment with the two surgeons this thursday. but i was looking at the screen during the ultrasound and it just confirmed what i already knew. that the tumor shrank, just not enough for smaller surgery. and of course i had whatnifs and why me’s and that spiraled last night.
meowmmy and klvans, yes i am definitely going into counseling or therapy. i actually do have two sessions booked before surgery. and i’m currently using an app called 7 cups. it’s a therapy app and it helps connect me to a licensed therapist or a volunteer listener. it helps that i don’t harp about the same things over and over on my friends or family or this thread. and you can aske for a volunteer listener anytime.
19501952/kate - i caved and actually did the venting you suggested. and it was really ugly cry and i held nothing back. i felt much better after.
Rljes - good to hear about the bloody mary and beer! some days i think i will have a hard time making that shift into a completely healthy lifestyle really. :))
nonahope - praying for good news for you! :)
blair - i hope your back pain doesn’t get worse. the coughing thing i had during taxol. it really dries everything out. try more fluids (water prefferably as anything with sugar will make it worse)and a diffuser in case that helps with the scratchy throat.
Feb 13, 2018 04:59PM nonahope wrote:
Kivans...Thank you. I've been through the same "cocktail", as many, when I had my first bout of BC. So, I like to provide any info I can from my past experience that might help others.
rljes...So sorry you are having such a tough time. Oh, that Bloody Mary sounds good -- not so much the beer.
Blair...No news from my onco. But, the results were on my e-mail portal on Saturday. I did not open it. I am too much of a chicken. I will wait until I see my onco on Thursday. I'm hoping since I didn't get a call, the report isn't all bad...we shall see.
I hope your visit with the radiology oncologist goes well.
Kat...I hope the visit with the surgeons goes well. Good idea on the counseling prior to surgery. I'm sure it will ease your mind.
Wishing all a good day!
Feb 13, 2018 08:19PM rljes wrote:
Does anybody feel as tired as I do? I just can't seem to get out of bed. Just Exhausted. Too tired to read, to tired to cook, I just want to sleep, but I can't. Mind racing.
Feb 13, 2018 10:37PM proudtospin wrote:
i am tired all the time, i go to bed about 8 and wake up about 8, and generly sleep like a rock, never did that before all this crud
Feb 13, 2018 11:31PM Meowmmy65 wrote:
I am definitely more tired and never want to get out of bed, but I have to go to work, so that is not an option. By the end of the day, I'm ready for sleep. Trazodone helps me sleep 8 hours every night, without a hangover.
Get as much rest as you can. You need it!
Feb 14, 2018 12:03AM proudtospin wrote:
well, you know that commercial where the woman falls and says ive fallen and can't get up? Well that was me this afternoon. Did manage to get up but very scary, guess my legs too tired today
Feb 14, 2018 01:00AM Blair2 wrote:
Oh hell yes you all, I have become totally worthless as far as physically moving myself to do things. Just washing the dishes seems to be a big challenge anymore. If I go get groceries - I’m so exhausted afterwards (with an aching back). I’m usually sitting in my easy chair just drifting the time away texting or looking up things on my iPad - I’ve never been so lazy, tired and worthless in all my life! This is the 5th week after last chemo. I sleep 8 hours and use to survive on 6.5 hrs of sleep. Not anymore.
I just got back from the RO. She will do two types of radiation - external and accuboost. The external is the face down machine that rolls under me as I dangle, and the accuboost is sort of a plate type thing that is similar to a mammo machine. It targets more closely to the area where the tumor once was. Both machines will stay away from my heart and lungs. It doesn’t squeeze or press the breast that hard, so that will be interesting. The good news is I only pay one doctor bill, and so I see her I think once a week, but I will not have to pay my co-pay each time like I did with chemo and labs. That’s good to know, but I have no idea what my out of pocket costs will be after Medicare’s 80%, or what my 20% will be. Ug.
Tomorrow morning they will do mapping and tattoo me (mark me up). I’m going to start the radiation treatments next Wednesday. The doctor will calculate the beams before then. I discussed the back pain, and she looked at my pointy breast, and said this happens all the time. It just needs a tuck - but not worried about it until next year. Radiation will shrink it some - maybe it will correct itself. I believe if the PS corrects it, he will cut above the nipple to get rid of the excess skin that is making point. Sounds gross, but that’s the plan.
Hope many of us get our energy back soon! Kat and Nonahope - will be thinking of you Thursday. Hang in there
Feb 14, 2018 05:48AM frozentoes wrote:
Cancer fatigue is real. There are so many things contributing to fatigue when you have cancer. The cancer, treatments (surgery, chemo, and rads! Not to mention meds), side effects, mental health, eating, and many other things. Chemo and radiation can be very hard on a person so try not to expect to bounce back right away. It will take time to return to normal. Some people are lucky enough to have experienced just a little bit of fatigue but I’m not sure if that’s the “norm”. Be patient with yourselves. It’s ok to take time to continue resting. This fight is a marathon, not a sprint.
Today was day 1 of AC. So far it’s been pretty uneventful. I had a short nap before dinner but I am feeling fine. Although, I am on a high dose of prednisone so that may have something to do with it. I’ve also got a new arm buddy with disco lights. I say disco lights because I want it to be cooler than it is so I’ll pretend. :) The nurse that put it on said, “It’ll just be a small poke”. My shouting “OH DAMN!” when it went off may demonstrate my disagreement of her assessment. Does it hurt when it distributes the medicine? She said 27 hours after it was stuck to me so I’ll find out tomorrow. I’ll make sure I’m not in the middle of Target or something in case it takes me by surprise.
Someone earlier mentioned frustration around food. I could not agree more! So I asked for an nutritionist with oncology experience. Luckily, my clinic has one. Pretty much the jist of what I learned is that I can still eat soy products but minimally, stick to lean proteins if I can, there is no need to eliminate citrus with the chemo I’m getting, and to generally try to eat a balanced diet.
As much as I’d love a Bloody Mary right now, I’ll just stick to water. Maybe in a couple of months....
Feb 15, 2018 12:24AM Meowmmy65 wrote:
Happy Valentine's Day Ladies!
Sending love and hugs to each one of you as we fight the beast.
Feb 15, 2018 06:44PM Blair2 wrote:
Thanks Meow for cute valentines wish. Hope everyone got a treat.
Frozentoes - good luck with the AC treatments. I hope no bad side effects come from the change in drugs. Is your disco buddy the Neulasta pod? I didn’t like the snap it gave off, or wearing the silly thing. I have found I can tolerate mandarins really well during those fluish days, or any day your taste buds are off.
I had my simulation process with radiation yesterday. It was quite a process. They positioned me face down similar to the MRI. They put tape markers and Xed them with a black marker all over my body including my lower back. Called out numbers to each other. I guess this was for body positioning, and rolled me into the donut shaped simulator that threw these red beams on me. It circled a couple of times and then rolled me out of it as they marked me again. Then they tattooed dots. That kind of stung, but tolerable. I think 4-5 of them. I was quite ticklish in the middle of my back as they marked me and I started laughing. I was a horrible patient, as I couldn’t help but be tickled. Plus with back pain, was not good. Last night as I was getting ready for bed, here were 4 taped Xes on my back that they said nothing about. (If they did, I forgot and thought I would only have the tattoos). I almost peeled them off thinking they forgot to take them off, but I called this morning and they said to leave them alone. Whew! I hope they stay on as I don’t start radiation until the 26th!
Icing my back - took an Advil, but isn’t much help. It’s just a constant pain. Still have pesky cough, but don’t feel sick with it. Coming from chest, not nose
Feb 15, 2018 09:16PM Magari wrote:
Hi, all! Hope everyone had a good V-Day. Meow - Thanks for the cute "card!"
My husband and I had a quick early dinner at home last night and then went to a small club to see my girlfriend sing. (She does a mix of originals, jazz and pop standards.) Although I still have hair due to cold capping, it is not pretty hair - thin, frizzy and graying. Wanted to look a little more put together than it's possible for me to do at this point, so I wore a wig and felt relatively okay about it. It was nice to get out and support my friend, but I suddenly hit the wall around 9:30 and had to head home to bed before she'd finished the second set.
I've had a nasty rash on my cheeks for the past several days; very red and sensitive, with tiny pustules. I contacted my MO's office and was prescribed Doxycycline for it, which seems to be helping it to resolve, slowly. Also have a pinched nerve in one shoulder which is pretty uncomfortable. I am trying to stretch it out, but it's hanging on. I seem to have lots of strange little secondary side effects, rather than the more usual ones....
Working on taxes over the last few days and am close to having our "worksheet" and supporting docs ready to hand over to our accountant. Lots of medical expenses this year; we shall see how they affect things.
Feb 16, 2018 05:23PM nonahope wrote:
I had my CT/oral and IV scan last Friday. I saw my onco yesterday. There may be a bit of progression in my bones, so he's ordering a nuclear bone scan. He said often times this will show on a CT and could easily be pseudo(?) spots and could be healing, rather than actual progression. But, a nuclear scan will differentiate. The CT was for my lungs, liver, pelvis area - all still okay in that area.
Feb 16, 2018 06:06PM proudtospin wrote:
hope, good luck on the results of your test, hoping it is psuedo and no more but good the onco has found it now,
Dang cold and damp today. Seems that is everyday. Yesterday my sweet cleaning gal was here so house is nicely spiffed up. She also hung the new shower curtain in my spare bathroom. It looks so nice and it is little things like that make life easier. Love my cleaning gal. It is not like a lot of money.but always a relief to not have to,worry on cleaning.
My pt said no Blt which is no bending, lifting or twisting, so no cleaning! My spine has a nasty tumor at the top, no operating on that spot
Feb 16, 2018 06:29PM rljes wrote:
I'm gearing up for Chemo #5 Tuesday. You all know how much we dread this. I crave Beer! I can drink a beer down like a glass of good water. Must be the yeast or whatever. Its like a treat. Still no relief in hip pain. I took my first nap yesterday -FOr 3 Hours! I try to nap everyday but can never sleep, too much going on up there. I guess it's all catching up with me.
I had Chronic Fatigue before DX of BC - and I have been worried if it would get worse. Its more than worse. Its devastating. I'll be happy to go back to my 'normal fatigue' after chemo.
Meow - I give my dog Trazadone for thunderstorms and fireworks to calm him down - but doesn't work on him - makes him hyper. But I'll borrow one and see what it does for me.
Proudtospin - I know that feeling of falling, and can't get up. I have a disease that decreases my muscles, and I remember very well the first time I got down on the floor and couldn't get up. And worse, the time I took a bath and couldn't get out. I had to grab what towels I could reach, drain the tub, and roll over the edge and fling myself over. Everyonce in a while I'll forget and when in the grocery stoop down to get something from bottom shelf and can't pull myself up. I have to get completely on the floor roll over on to my hands and knees and climb up the cart. (usually by then someone comes along and gives me a hand) Sorry you had to go thru that. Its a scary feeling.
Blair - sounds like you have a plan for rads. Just hope it doesn't hurt your back laying down. I hate it when my MO says "that's not a SE".
Nonahope - good luck on your Nuclear Bone scans