Chemo starting November 2018
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Hazel-Nut, I don't know how you can do 14 days between treatment. I suppose if you look on the bright side, you will be done way before the TCHP protocol. I had the same mouth symptoms and they didn't last a long time. Gotta love the salt water rinse! Hugs to you, I hope you are having a good day, hope everyone is having a good day.
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MOCat - it's a struggle to be sure.
I'm coming down with a cold, I woke up with a screaming sore throat and I can feel the achy-ness coming on. I'm tempted to call the oncologist crying and beg her to push my chemo till Friday so I can have a few extra days. Overall for my personal schedule it would be better to do it Wednesday so I'll probably suck it up and talk myself into going as planned and cry about it later. No one said it would be easy right? I agreed to take on the employee holiday party for my building and have a billion things to do for that as well as take care of everything for Christmas at home. I wonder what I'm trying to prove and who I'm trying to prove it to when every time something comes up my immediate answer is - don't worry, I'll take care of it.
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Oh dear, Hazel-Nut - I think calling your doctor is a good idea. Our white counts don't allow much of getting sick and probably it is a good idea to keep an eye on yourself, so you don't end up in the hospital. Easy for me to say not to overdo things, but put you as #1 (if you can make yourself). We've had stuff going around here at work this week and I have a big bottle of antibacterial spray and paper towels. I'm sorry, Hazel-Nut.
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I called the triage nurse first thing this morning when I woke up not feeling well and reported my symptoms. My biggest fear is ending up in the hospital so I wanted to make sure they didn't want to get me in for any labs or a rapid strep but they said just rest and hydrate and if I get worse to let them know. I'm probably going to leave work early today and I already backed out of a work event this evening at a local restaurant.
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Hi everyone. I just signed up to this forum. I am 35 and was diagnosed with breast cancer last February. I went through 16 rounds of chemo, had a double mastectomy, 25 rounds of radiation, and just started herceptin/perjeta treatments. I lost my hair after my adriamycin treatments. It's coming back now. Will I lose it again? My doctor said probably not but I wanted some feedback here. I've also been dealing with numbness and tingling of my hands.
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Welcome, Kry-stal! We're so glad you've found our community, and we hope it can be a source of support for you. You might find some information about hair loss after herceptin/perjeta in our Hair, Hair, Hair thread. Lots of posts to work through, but plenty of helpful advice! https://community.breastcancer.org/forum/69/topics...
The Mods
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3rd A/C infusion today. Had the onco nurses slow down some of the cocktails as I developed a headache during infusion. Now, 3am night sweats, persistent headache (still) and mind fog (attention span of a hamster on meth)....
Here is something from the late night Pinterest find.... A good reminder for all of us....
Edited to add: Below post was deleted, somehow I accidentally posted the above 2X. Darn this stupid fog!
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3rd A/C infusion today. Had the onco nurses slow down some of the cocktails as I developed a headache during infusion. Now, 3am night sweats, persistent headache (still) and mind fog (attention span of a hamster on meth)....
Here is something from the late night Pinterest find.... A good reminder for all of us....
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Hi everyone,
I am glad I found your forum. It gave me so much strength. I live in the Sweden and I am 45 years old.I have 2 children. I got my first cytostatics on November 30th.
My goal is to see my children grow up and play with my grandchildren. I am focused on this.
Wishing everyone a god day 🤗.
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welcome Aglaja and kry-stal. Maggie - hope you are better today. Your photo sure means a lot. Hydrate today! Wishing you all some peace this weekend.
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Hazel-Nut - I've found the personal nurse to be invaluable. My insurance company denied my doctor's request for Aloxi, indicating that it was repetitive to the Neulasta. Basically, a computer kicked it out for some stupid reason. She immediately got on the phone and called the approval department, and within 24 hours, it was approved. She calls me to check in once a week, and she's been a great source of comfort for me. Her sole role in our relationship is to help me navigate my care. She is an advocate for me, not the insurance company. I have no doubt that, if needed, she would call my oncologist and "talk the talk". She's been with me every step of this journey.
I met with my oncologist yesterday, and we talked about my first cycle. When I went in on Monday for the head pain, my neutrophylls were 340. Other than the headache, I felt completely fine. The doctor has no idea at all why they were so low. My overall count was also low. But by Thursday, up to normal levels (my overall WBC was +16,000!). He's concerned about the low count, but decided to just monitor closely going forward since I felt fine except the headache.
He is not convinced the headache was caused by the nausea meds, but has agreed to change them up. I basically told him that I'd rather be sleeping on the bathroom floor vomiting for a week than have that head pain again. We also agreed that if I get the intense head pain next go round, on day 2 he will send me to the ER for IV pain meds. He's not sure what will work, but will work with the ER docs to figure it out. I told him that I was in so much pain that I would have welcomed being admitted and drugged to incoherent long enough to let the pain pass.
We also discussed that if my counts drop lower this next go round, I need to have a go bag prepared and ready to be admitted. Hopefully I can avoid an infection, but he said it's usually not until round three that levels get as low as mine on my regime. It was just bizarre that I felt totally, completely fine except the headache. He said I had no sinus infection, but I'm not convinced. One day of antibiotics and headache gone.....
On another note, I cut my hair short today. Hasn't been short in 48 years! I don't mind it at all (love the curl in the back, top not quite what I want yet) but everyone else seems to love it. Several folks have said they think I should keep it this way when it grows back......
I go back to work Monday with next infusion on the 18th. Here we go.......
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Apparently it wasn’t a cold but I sure had a hard day yesterday. I left work a couple hours early because by mid afternoon I felt terrible. By the time I got home my temp was over 100 and by early evening I was at 101.9. I’m going to admit here and now that I was being stubborn and flat out refused to call the oncologist because I was adamant that I was not going to the hospital. By bedtime the fever had broken and I woke up this morning feeling 100% normal. Im sure my blood counts are terrible but I told my husband there was no point in calling the on call last night because the only thing they would tell me to do was go to the hospital and there is no way I was going to the hospital so there was no point in calling. We compromised that I would call in the morning if I still felt bad but it all ended up ok. I’m going to have to admit my sins to the oncologist Wednesday during my appointment because my husband will rat on me anyway if I don’t tell her myself. I called in sick to work today even though I felt physically fine. I took yesterday as a sign that my body was telling me it had had enough. Today has been full of rest and hydration.
JennieK- thanks for your input and I’m glad your headache is gone. I hope it never comes back!
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Hi friends...I was just telling a "real life" friend about this board, how we support each other, worry about each and cheer each other on. She was absolutely amazed! As she said, "it wonderful that strangers with a devastating diagnosis can relate and support others who are going through the same thing, understand the ups and downs and all of the emotions involved".
Hazel-I also had a fever one night and refused to call the doctor until the morning, but luckily the fever broke first. I guess I wasn't the smartest thing to do, but the last thing I wanted to hear was -go the the hospital.
Jennie-I'm sorry you had to suffer with the headaches..horrible.
Maddie-how are you doing? Did you get a headache during the other infusions?
Today I woke up feeling like my mouth is stuffed with cotton (not a metallic taste). I hope the Biotene helps, but does anyone know what this is a side effect from. I go to MO on Monday with my long list of questions.
Have a good and pain free weekend!!
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Flower- no more headache now and I hadn't had any headaches during the previous 2 infusions. Had a mild headache for a few days but it was about day 10-12 after A/C #2. Neulasta injection last night even with Claritin I can feel some of the aches coming on... but better than last time. I started Claritin the day before infusion this go around and plan on continuing until 5-6 days post.
I haven't had any fevers or anything. Night sweats again on A/C #3 (had them on A/C #1) but nothing on #2. So weird. Haven't had a cycle since a few days after A/C #1. I feel like I have been sleeping a whole lot more with this round. More brain fog, less ability to focus..... I cling to the fact that this is just temporary and most will resolve itself in time. My husband has been a constant support and reminding me to drink water all the time. I love cooking but none of the flavors lately have hit my palate (not that things taste awful or good either, I just don't have a yen for anything in particular). I eat because I need to but my weight has yoyo'd about 8 lbs up an down.
My sister in law had talked to me earlier this year about an app called Calm (meditation, breathing and anxiety relief) that she had a lot of success with. I downloaded a free 7 day trial and am on day 3-4. Taking care of myself has had to become more of a priority.
Brie is letting me know it's time for her dinner (it's not, she has 45 more minutes) by licking my face, bald head and hands profusely. We had a mastiff previously and she drooled (a lot) - but man oh man - Brie when she has her "I need food now" in her hound brain, she is more liquid slurp than old Maddie!
MB1
(Edited to read - taking care of myself HAS HAD to become...)
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I read about L-Glutamine for the mouth stuff (I had that mouth has a film symptom after treatment #1, and the salt water helped). I bought some pills in a bottle and have not had a problem with the mouth stuff during treatment #2. Here is a link about it: https://integrativeoncology-essentials.com/2013/02...
I think I will put that Calm app on my phone and try it. I used a breathing technique when I had some of my scans that made me nervous and it helped me. Great idea! I'm glad your headaches have gone away.
We have a lot of people asking off for work the week of Christmas. I am a "floater" and fill in for those taking vacation. We have two floaters, so I am not the only one. I told my boss the only commitment I can make is to the bathroom! I have treatment #3 on December 19th and I just don't know how well I will be doing while everyone wants to take off. I am hopeful this treatment will be not too bad. I think there is some truth to everybody is different now. At first, I thought they just tell you that so they don't have to tell you the truth!
Hope everyone is having a warm and peaceful weekend! Drink drink drink!! I have an Orange Cream bottle of water!0 -
Anyone have trouble sleeping? I'm just not at all tired (I know, weird). I'm not fatigued and not sleeping during the day, but then I get in bed and just don't sleep at night. My #1 TC infusion was on 11.27. I'm not on any drugs, and just not sleeping. WTH?
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Jennie-I am having the same issue, probably sleeping 4-5 hrs a night if I'm lucky. Day 3 and 4 after chemo I slept all day and nite but since then I just cant sleep. I did learn something though....during the night there is always one cable channel that is playing "Two and a Half Men". LOL Last night I couldn't even just lie in bed, so at 3:30 I was doing a load of laundry. This is not normal .
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Good morning everyone. It's my 42nd birthday today and I have much to be grateful for. Up with Brie for her walk and breakfast as usual btwn 4:30 and 5am. Our walk this morning was brisk and cloudy. You couldn't see any stars in the sky. I love being able to see them walking her this early, but the clouds were just too dense. I'm making baked egg cups with hashbrown bases to freeze and then eat thru the next week or so in a few hrs.
Then hitting the grocery store for some staples.... Brown sugar, karo syrup, crunchy pb, milk chocolate chips, quick oats, lemons, powder sugar, and more flour and my mom / middle sister are coming over and we're baking baking baking! O'henry bars and lemon squares. And maybe some Hello Dolly bars. The house is going to smell soooo good.
Wishing everyone their best day today and every day! MB1
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Happy Birthday Maddie!
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Happy belated birthday!!! Happy baking too, those sound delicious! Your egg cups sound good too! It is nice to see stars early in the morning on a clear morning, such beauty! I hope none of you ladies have had the bad weather they are talking about on the news. Hugs to you.
I wake up about every night at 1:30. I try and go back to sleep, but sometimes I'll get up if it gets to be 2:30 or 3 and I'm still waking up. I know the steroids can keep you up, and mine were weeks ago. It is just my mind, thinking about my life. I'm so thankful to be able to talk to all of you. So many things have changed, and sometimes I think will never be the same again. The journey continues, whether we want it to or not. Hope we all have a good week. Much love to all undergoing treatment this week, you are in my thoughts and prayers.
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MCLady...I just came from Dr. I cant sleep more than 2-3 straight hrs and he said thats all from the steroids (so were my hiccups). He is cutting my steroids in half and thinks I will feel better next time. Don't you feel that everyday of this adventure brings something new to our day?
Need suggestion please!! Dr said its time to start exercising again on good days..perhaps a modified version of what I'm used to (I like Zumba). I know my hair is going in a few days. What do you think I should wear on my head-that wont slip off? A bamboo or cotton beanie/sleep cap?
Hope everyone is having a quiet day!
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Steroids will also turn your face red, just fyi. People at work thought something was wrong with me, and the nurse informed me of that. Yes, I agree Flower, every day is a new adventure! I've totally lost my appetite and wish people would quit telling me to eat. I am a chubby girl and have the weight to lose and I do not want to throw up. My stomach knows!!
Exercise and water, Flower. My co-worker's husband has leukemia and she told me to move as much as I can. And drink as much water as I can. If you have a gift shop at your cancer center, they can show you some nice hats to sleep in. If I had it to do over again, the very first sign of hair falling out would be the day it got as short as possible. Watching it go down the shower drain on a day I was home by myself was too much for me, but that is just me. Everyone is different! Many hugs and love to you girls.
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Missouri, I was told to take Dexamethasone 8 mg (steroid) twice a day for 3 days, The day after infusion, I have red and swollen face (hot flushes in my cheeks) that lasted for 4 days, my Onco told me its because of the Taxotere, that the steroids will help in my hot flushes. I was going to ask him if he can lower my steroids for the next infusion because I have read something about steroids giving you hot flushes in the face, but he said its good for hot flushes, now I'm confuse. Anybody here taking steroid pill? I want to know if I am taking too much than usual.
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After my A/C chemo, I am taking 8mg dexamethasone for day 2-4 after chemo. I didn't have any face flushing or redness. As part of the pre-meds for the A/C chemo, I also get IV dexamethasone (along w 3 or 4 other IV things as pre-meds). I have gotten some of that weird steroid energy before day of and few days after chemo w the A/C.
I think different parts of the US, different treatment centers (affiliates) and even different docs w/in those affiliates will prescribe different pre-meds, different post meds and then monitor everyones progress. There has to be some sort of "standard" of care flow chart everyone is following based on staging, bc types etc, but still flexible allowing for individual docs preferences or state regs or insurance constraints or something....
All I know is, it seems like there should be some sort of basic patient manual out there that should give all of us some piece of mind that our docs aren't just pulling this stuff like taffy out of their behinds..... (Or string from a cats patootie, or socks from a dog's mouth)
My autocorrect all day today has been "fixing" taxol (paclitaxel) treatment to read taco treatment and if there was ever a treatment for the big C that was TACOS, I would show up with a sombrero and boots on, gladly raise my glass (of marguerita) and sign up.....
Just my "I worked for 9hrs today, it's freaking cold outside, my heat pump is a block of ice, had a good birthday, omg my body aches" two cents mind right now..... MB1
(PS - thanks for the bday wishes ladies!)
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One more note before bed - there is a good entry on the mobile pg 1 of Dec 2018 chemo thread from InsideOut2 (had tx in 2017) about fighting... Very encouraging.....
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Taco's - just smiling. Thank you for that
I'll go look Maddie, I always need encouragement! Thanks for all your good words too.
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I'm in the pre med stage gearing up for round 3 AC tomorrow. Boy this short cycle went by in a flash. I ended to signing up with the nurse case manager through my insurance company and had a long discussion with her the other day. One thing she pointed out as I was giving her my medical info is how sensitive I seem to be to a lot of meds and how I seem to have a lot of atypical responses and that maybe my oncology team isn't recognizing when looking at the whole. I don't disagree with her, most of the side effects I'm having to the meds I'm prescribed have the doctors looking at me like maybe I'm making it up lol. Speaking of bizarre side effects, the dexamethasone absolutely kills my appetite. It works better than any prescription appetite suppressant out there. Energy for days, absolutely zero hunger signals.
I'll speak to the oncologist about it again tomorrow. Unless it's a potentially anaphylactic reaction she doesn't seem to care much about the med side effects. When I look back on the things I track here it makes my oncologist look like she's doing a pretty crap job. Truthfully I do wish she were maybe a little more thorough and a lot less hands off when it comes to treatment and interventions but in all I'm very happy with her. She's very knowledgeable, actually has experience with my type of cancer (a major feat!) and we get on well. I'd just really like her to look at some of the things I tell her and be like "yup, let's do something about that". My husband will be with me at tomorrows appointment and I think I'll ask him to help advocate a little. I only speak up when things are really affecting my quality of life and he knows that so I may seem like I'm just mentioning a few side effects but I hate to be seen as a complainer or the squeaky wheel. He's as laid back as I am but has an easier time pushing an issue, especially when it comes to me. He hates when the doctors brush off things I say because he knows that behind the scenes I'm actually not saying 90% of what's going on.
Whew, this is a long one! One last thing - those of you with ports, does the infusion center have patient techs accessing your port or does the nurse do it? My last infusion the tech did it and she had the shoddiest sterile technique I actually stopped her along the way and had her change gloves and dispose of some items she had contaminated. As a nurse I know that when I show up tomorrow I'm going to be seen as "that woman" when I say I don't want the tech but I guess in this instance it's a risk I'll have to take. Nurses and techs may be used to having patients request different staff and we don't let that affect the quality of the care provided but I know all too well those patients do take a little bit of behind the scenes abuse. Tomorrow is $1/dozen donuts at Krispy Kreme, maybe it'll soften their feeling if I show up with goodies lol.
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Hazel-nut. About the port tech please remember that sometimes the other nurses would rather have patients complain rather than them having to deal with someone who is under skilled. If you make a point of a problem it gets easier for them to deal with someone who isn't doing their job well.
Tacos 😋
Just finished round three. Am opting to go in for the neulasta shot tomorrow rather than the on pro. Last round I had all kind of emotional turmoil in general . The smells the sounds -just did not handle it well. So I talked with my doctor and got a script for clonazepan. I went through chemo with both my parents before their deaths and then a similar thing with my daughter (blood disorder - she's doing extremely well). Just a lot of baggage. The clonazepan worked well. A very chill session. Plus a wonderful nurse. Plus I'm going in for fluids because it's been such a struggle to drink anything. Luckily we are just a couple minute away from the hospital (my husband is an ob/gym and wanted to be within walking distance to the Hosp - paying off now). Good luck to all!
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I’m just going to throw in a random kitty pic cuz she’s just laying there so cute. This was right after getting yelled at for trying to climb the Christmas tree. Be well ladies
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