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Chemo starting April 2018

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Comments

  • Djt
    Djt Member Posts: 176

    So everyone..,.tell me the routine for the baking soda rinse plz...how much, how long, when? Is it with warm water and salt?

  • astyanax66
    astyanax66 Member Posts: 223

    Hi, all,

    Finished with week 2 of 12. Most blood work was good...some mildly odd liver enzymes, so I’m off all acetaminophen products, ibuprofen only. Ouchie. I’m using baking soda toothpaste and following it with Biotene rinse, which has mild peroxide, and so far, so good on mouth issues. I called the dentist, and he said this should work, but call back if I needed help. I’m eating frequentsmall, bland meals with about 80 g of protein a day, mostly from nut butters and Greek yogurt. Just can’t stand meats right now. The nurse yesterday showed me a chocolate milk (real) with 20 g of protein, so I might give that a try. The second round was like a third of the time, which was very nice compared to the loooong first session. I’m on a routine dose of oral Zofran that works well for me.

    I’ve tried both cold and warm water for toothpaste—oddly, warm feel better. Thursday and Friday tend to be more achy days, but I get the bulk of my work done MW.

    Good luck to everyone this week—hugs to all,

    Dee


  • gussy
    gussy Member Posts: 77

    Hi Deb - get the port. It makes the whole process easier.

  • duffyzmom
    duffyzmom Member Posts: 217

    Hi All! Wow this week has been busy. Monday chemo education went well. I was super happy to see 3 of my favorite chemo nurses are still there. All shocked to see me returning after 7 years. Good news is Dr and nurses say TCH will be much easier than the RCHOP I had previously. Adriamycin is just plan awful and I send light and love to all of you enduring that evil red beast. Tuesday I had my MUGA and now I know why they don't want me to have anymore Adriamycin. 8 years ago when I had my initial MUGA my score was 75. I'm now a 65. I guess it could be aging etc but my guess is that's the permanent irreversible damage that the red devil is known for. Yesterday was port placement. All went well. I pretty much Hydrocodeined the afternoon away and woke feeling much better this morning.

    I'm starting to line up my chemo buddies (Saving hubby taking vacation days for only if needed).

    Djt-- Yes it is comforting to know we can be starting together. Glad you found some options for head covers. Me I dyed my hair rose gold Monday. I plan to be a red head by the time hubby shaves my head this time. Nothing like knowing you'll be losing your hair to give you an excuse to try a color you've always wanted to try.

    Those of you battling mouth issues. Ice chips can be a great relief. This time I bought a countertop ice maker that makes easily chewable ice chips. Also, see if your cancer center will call I a script for the Ann Arbor mouthwash. My brother was working at a children's cancer center last time I went through treatment and the nurses there swore by it. Different parts of the country call it different things but its a mix of ingredients that really do help with mouth sores.

  • astyanax66
    astyanax66 Member Posts: 223

    Hi Linda, good luck with everything today! They will monitor you closely and keep an eye on things.

    Dee

  • Debsta
    Debsta Member Posts: 6

    Hi everyone, just checking in... I'm on round 2 day 7. I think for the most part my symptoms/schedule were the same as round 1, but last night I got hit with my first real bout of nausea. I took my meds immediately and it subsided, but wow, I was just surprised how quickly it turned on. My tastebuds are also very messed up, its amazing how bland everything can taste.

    My hair is rapidly falling out now, I shaved it down last week took advice to do a #3 on the clipper to reduce some of the head pain - but I don't think it worked. I'm going to use my husband's clippers tonight to bring it down to nothing, as the shedding is driving me nuts.

    I'm looking forward to being on the upswing now and although it snowed again today, I'm really hoping the weather warms up so I can look forward to my walks.

    Found this quote today...

    "Nothing is impossible, the word itself says 'I'm possible'!"
    Audrey Hepburn

  • astyanax66
    astyanax66 Member Posts: 223

    Hi Debsta,

    So glad you grabbed the anti-nausea meds. I know what you mean--I can kind of feel it at a distance, and it's like clockwork (I take Zofran every 8 hours--and it can be like 10 minutes until the next dose, and I feel a "twinge"). I am having taste bud issues as well--they pretty much seem to start soon after infusion and last, hmmm, maybe 4-5 days? At least I then have a day or two of taste before heading back. How often are your cycles?

    Dee

  • Frog-on-the-lilypad
    Frog-on-the-lilypad Member Posts: 159

    Good morning,

    AC Round 2 day 5. I am feeling much better. Water still tastes off. Dee,I hope you feel better soon. Debsta, I hope we feel better and enjoy the weekend. I think I am now at a point where I cannot ignore the shedding anymore. So today will be the day. Its so wierd that the meds make us look sick and not the sneaky disease that we have. I feel so mad at times.

    Any tips on how to make it easy for my 6 year old? I told her mommy is sick and she will take lots of strong medications which will make her weak for a few months before she gets better. I have not mentioned cancer. I do not want her to see the fear in stranger’s faces. Am I thinking too much? Any ideas, all ideas are appreciated.

    Linda and Urdrago, hugs to both of you. Hope you guys feel better soon

  • linda2119
    linda2119 Member Posts: 60

    AC round 1 - DONE! Everything went smoothly - although we waited a bit because there were so many people - 5! - having their first day of chemo today. That was sobering. My nurse was fantastic, I handled everything fine, we went for Chinese food afterward (with the nurse's blessing) and I just woke up from a nap.

    The goal of the next few days: drink water, walk (maybe play a couple holes of golf?), and keep nausea at bay.

    Thanks for all the words of encouragement!

  • debal
    debal Member Posts: 600

    Frog, I think you are handling things with your daughter perfectly. My own kids are grown but i have 7 year old twins next door that are like my own. We told them "Mrs. Debbie" will be taking some strong medicines that will make her feel not so good before I get better. One of them is a worries a lot, the other is a bit more mature for her age. Kids are so different but you will know what to say. I see them almost everyday. Preparing them for my hair loss..and boy it's happening! Ugh. You are not thinking too much, Mom. Throw in a Disney movie and snuggle💗 I just said the same recently, it's the meds that make us look sick, not the disease. I try to look at this as something I have to go through. We will get through this ladies. I hope everyone feels better soon.

  • gawarrior
    gawarrior Member Posts: 368

    Congrats on finishing Round 1, Linda 2119! I start my first one (AC) tomorrow and I don't mind saying I'm getting really nervous now that it's here. I want to get started, but at the same time I want to curl up and hide, you know?.

    This week was rough - I had my port surgically placed on Tues afternoon (after I spent the morning in the MRI machine while they did a biopsy of a second area in the same breast where the first cancer is). I ended up with a partially collapsed lung, although I didn't realize that until today after the surgeon ordered a chest xray. I thought my backache was from the port (which, by the way, hurts like heck, just like y'all said it would! Man, seatbelts are a killer since it's in the left side of my chest).

    Frog on the Lilypad, thanks for the tip re: headaches and AC. I'll try to remember to ask them to slow down tomorrow. You mentioned your fingernail turning black - did you see the tips on icing your fingers/toes during infusions? I wonder if that will help?

    I'm glad everyone seems to be doing pretty well and that the second rounds don't seem much different from the first. I sort of thought they might compound on each other...

    Hugs to you all!

  • astyanax66
    astyanax66 Member Posts: 223

    Thanks, Frog. I agree with others--sounds like you are saying just the right things for your daughter. If you thought it appropriate, maybe talk about how some people have hair and some don't, and you might not for a little while, but it will come back. Does she have a favorite story or TV character without hair? (Sorry, my mind goes straight to Patrick Stewart, who I adore, but that's not going to be relative to her). I used that analogy (a TV character) when my son was little to talk about sensitive things. Yes, I am so with you on the irony of how our medications make us look sick!

    Linda! That is amazing! Chinese food?? WOW. Keep it up! You're doing great!

    GAWarrior (My fellow Georgian): Oh dang. I'm so so sorry about the port and the collapsed lung (yes, they told me that was a risk, and they did an x-ray immediately after before they sent me home). Have you got a port pillow for the car? I swear by mine--it's been a big help. It has velcro to move around easily--got it on Etsy. Are you feeling better? What on earth do they do to fix a collapsed lung? That's scary as heck! Please tell me you have some pain meds...

    dee

  • mdevroy
    mdevroy Member Posts: 5

    Second treatment today 10 more to go. Was feeling fine until my son called today was his last day at college he packed up to come home tomorrow untill fall. He went to my mom's house before coming the rest of the way home to check on it. Mom is in Florida. That's when he found out someone broke in his jeep and still his laptop and playstation he's so upset blames himself he forgot his back door lock did not work. I feel so bad poor kid can't catch a break.

  • Frog-on-the-lilypad
    Frog-on-the-lilypad Member Posts: 159

    Thank you Deb and Dee for the encouraging words. I had a good chat with her about mommy losing hair and I was surprised that she has retained a lot of things I told her about the fight between bad cells and meds. We also had lots of fun running fingers through my hair and making hairfall. I know it might sound gross or sad but she laughed through it and I felt good.

    GA Warrior, you can do it. Will be thinking about you.

  • debal
    debal Member Posts: 600

    Frog, bless her heart and yours💗 It is not gross at all! I could use the help with mine right now lol ugh. Who knows, she could have thought losing hair may hurt you. I would imagine it was comforting to her that she helped you. I noticed we started chemo at the same time. I'm trying hard to hang on to this hair through the weekend. I'm sure my 2nd treatment on Monday will knock the rest out. Positive thoughts for EVERYONE today💗

  • urdrago71
    urdrago71 Member Posts: 500

    Good morning ladies,

    I wanted to say I made it through 2nd cycle w/ issues. 1) my port didn't want to flush / no blood on the return. That took the nurse a few syringes and then actual medication in a syringe before the clot broke loss. About an extra hour, and not painful at all. They give me Kytril instead of zofran.. no headaches after infusion great news.

    However I was more nauses later and needed back up pill. Stayed warm and slept all night..MO said chemo is working tumor is smaller and I might not need carboplatin with the taxol..Also I will start taxol after my 4th cycle of AC on day 14, then June start talking to surgeons.

    Im Feeling good this morning so off to work. Wish every one good vibes and Happy Friday.

    FROG--- extra hugs.

    GAwarror , Prayers for a fast recovery. .

  • leli
    leli Member Posts: 25

    Day 16 and the shedding begins...

  • debal
    debal Member Posts: 600

    leli, I lost half my hair in the shower this morning. Wearing a cap around the house so I don't get what's left everywhere till my 6pm buzz appt. Daughter and hubby going with me. I'm almost relieved to get this over with. When my daughter saw the hair in the shower she cried and said she is glad for me that this part will be over. Not my idea of a fun Friday night😕

  • gawarrior
    gawarrior Member Posts: 368

    So sorry for your son, mdevroy!

    Frog, you made you hair loss fun for your daughter! That was a great way to help her deal with it.

    Dee/astyanax66, thanks for the port pillow recommendation. I'll check them out on Amazon.

    Udrago71, that's great news that your tumor has shrunk already! I'm hoping to join you by the next go 'round. My biopsy of my second suspicious site came back as benign but abnormal cells, so onco is recommending a mastectomy instead of lumpectomy. That's fine with me! Glad you felt well enough to go to work after round 2 (and managed to kick the nausea).

    My first chemo round went fine today - I was worried for nothing. I iced my hands and feet during treatment (boy do they get achingly cold!). Now, my legs are tingling from the knees down and feel swollen (I'm not sure they are, though). The other thing that worries me is that I've drunk at least 2 liters of water since I was released around 1:30 p.m. (4 hours ago) and I'm barely peeing and it is NOT orange or red or whatever (it was orange when I was in the chemo treatment room, though). Am I just super-hydrated and that's why there's no color? Did anyone else NOT have color for the first couple days of A?

  • Frog-on-the-lilypad
    Frog-on-the-lilypad Member Posts: 159

    Good morning ladies,

    Udrago 71, great news on the tumour shrinking already.

    GA Warrior, I peed red only once after the first infusion. I had loads to drink and had to drag the meds and everything to the loo 3 times.

    I buzzed my hair off last night. My scalp was really sore. I cried and laughed through it. Hubby did it for me.

    Hugs to everyone here. Lets have a good weekend

  • linda2119
    linda2119 Member Posts: 60

    GAWarrior - I too am wondering about the pink urine. I had my first infusion yesterday, and my urine is pretty normal looking. There's always something to worry about.

    I'm sitting here with my neulesta pod doing its thing. It is not nearly as creepy as I expected. So glad the nurse encouraged me to use it.

    I'm still not experiencing any nausea. I'm trying not to get my hopes up.

    Frog - I love your daughter's reaction to the hair loss. I just received an overwhelming bag of gifts from my coworkers - including lots of beanies and hats. I'm almost - almost not quite - excited about wearing them.

    Feeling pretty optimistic right now - but also waiting for the nausea and fatigue to hit.

    Happy Friday everyone!

  • urdrago71
    urdrago71 Member Posts: 500

    Good evening ladies, hope everyone took a little time to enjoy the spring weather. My window is still open, took my puppy for a walk..

    Frog - I love that u have her beside u and supporting you.. so adorable mom and daughter..my hair is still falling out,guess it's time to wear a cap..

    GAwarrior- I did pee orange the first time. After that it was all clear. You are peeing right?? Do u feel like something is not right?

  • gawarrior
    gawarrior Member Posts: 368

    Linda2119, glad you're doing well! Your coworkers sound awesome.

    Frog, I'm sorry about your hair. I'm prepared but still dreading that day. Hubby's going to do my buzz cut, too. He and I will have the same hairstyle for a few days, lol.

    Thank you all for letting me know that clear urine is okay. I really thought I was going to see pink or orange for a few days. I ended up in the ER last night because my sodium levels were too low, so let me say that you should drink, but not overload yourself like I did. I drank 3 liters in about 6 hours (trying to keep my heart/kidneys/bladder flushed out), but I could only pee out about a cup of urine every hour. Hubby dragged me in to the ER (I protested), but he was right. An IV of electrolytes made it all go away and I feel pretty good today (until Neulasta kicks in this afternoon?). The ER doc says A is processed by the liver, so no amount of water is going to speed it through. He recommended alternating water and Gatorade to keep electrolytes balanced.

    Also, djt, regarding your teeth - I'm going to backtrack and tell you to start using a prescription fluoride during chemo if you feel that your mouth is dry (because mine is very dry today). It won't hurt you to use it for a longer period (just check with your onocologist first), but it will help. You can get those little brush things (https://www.amazon.com/3612H-Proxabrush-Go-Between...) (pic below) and dip them into the fluoride gel, then work them in between wide spaces or under bridges or between implants to ward off gumline decay.

    udrago71, you mentioned that your tumor is already shrinking. How did the DR know that? Do I have another ultrasound to look forward to in the next week or so?

    Hugs and happy weekend to everyone!

    G-U-M Go-Betweens Proxabrush Cleaners Moderate - 10 Count, Pack of 2

  • urdrago71
    urdrago71 Member Posts: 500

    GA warrior, I can feel the difference as well. If feels flatter. And before my lymph nodes where painful and easy to find. Even I have a difficult time finding the areas and no more pain. That's with out ultra sound yet.

    We are healing thank God .

  • astyanax66
    astyanax66 Member Posts: 223

    Hi, all,

    Well, Thursday night, I was woken by a fair amount of joint pain/myalgia. I know it's a possible side effect of Taxol. I've been taken off all pain meds except Ibuprofen (acetaminophen may be aggravating my liver)--but I was given Tramadol for difficult pain. Things were kind of rough into the evening on Friday, so I tried Claritin (after reading a lot about how it helped others). I don't know if the pain just subsided on its own or not, or the Claritin really did work--but I slept well and did not have nearly as much pain through the night. Today I feel almost normal, lol--just minor pain. It's way too early to talk about reducing the dose, etc., so I just need to find good coping measures.

    Dee

  • gawarrior
    gawarrior Member Posts: 368

    urdrago71, that's so awesome that you can feel it shrinking! It makes this all worth it. If you can feel the difference, I'm hopeful to feel some results with mine in the next 2 weeks. :)

    astynanax66, they told me in treatment yesterday to take Claritin (plain, NOT Claritin D) and also Pepcid the day before the Neulasta shot and for 5 days afterward. Apparently the shot does something with our histamines, so the Claritin and Pepcid are anti-histamine. I got the non-drowsy versions and took mine this morning (my Neulasta fires this afternoon). With everything that went on yesterday, I forgot to take it, so I'm hoping today will be enough to get things started. Anyhow, I hope this helps you! Fingers crossed that you keep feeling better!

  • astyanax66
    astyanax66 Member Posts: 223

    Hi, GAWarrior--did they tell you anything about if Claritin would help in general? I've not had to take any Neulasta yet since my WBC are still quite good. I think the main problem is that for my spinal stenosis (I've had fusions C4-7 and have degeneration at T8-10), I've been on Tylenol and Aleve for a while--and now, that's been yanked away completely. So, I've got Taxol pain (mostly in my knees and ankles), plus my spine pain. I took a walk today and was gasping by the time we got back. (We have a lot of stairs in our house, too). I'm going to take another plain Claritin--don't think it would hurt, might help. The Tramadol isn't helping as much as I'd hoped--it's been useful in the past if I had major spinal pain, so I'm surprised it's not doing more now. Thanks for the Claritin news--maybe it will do the trick. :)

    dee

  • ingerp
    ingerp Member Posts: 1,515

    I posted this in the Weekly Taxol group yesterday but last night <as I was not sleeping> I thought I'd copy it here and in the starting in March threads: (I see some familiar names from over there--please do not think you have to answer twice!)

    "Dear ladies--I'll officially join the group in a couple of weeks. I have an appt for patient education on Monday. In the meantime I have a bunch of questions, and while I could scour BCO and come up with a lot of answers, I thought I'd just post here. Most relate specifically to the first infusion.

    (1) What did you eat the night before your first infusion? Big fun meal in a great restaurant? Or something light so as not to have a lot of food in your tummy through the infusion?

    (2) Did you eat morning of? I've been intermittent fasting for quite a while so I don't normally eat breakfast. Is going in with an empty tummy a bad idea?

    (3) What clothes do you typically wear? I'm a little torn between thinking I'll want to be like a kid and go in my jammies with a teddy bear, and wanting to put on some decent clothes and walk in with a bit of an attitude. Is a short-sleeved shirt required (I will not have a port)?

    (4) I've read about water water water. Do you pre-hydrate the day before? I assume taking a pee during infusion is okay? How long after do you keep drinking a lot of water?

    (5) Talk to me about Claritin*, mouthwash, and antacids.

    (6) I have a weird fear of (or maybe distaste for) the big D. I've been surprised to read about so many women dealing with constipation. Specifically for Taxol + Herceptin, did you have any bowel effects? Anybody prophylactically take Imodium before infusion?

    (7) I know exercise is important and will do my best to keep up with my routine, but is it weird to exercise the same day as an infusion? The place I'll go is across the street from a gym I belong to and in my head, at least after the first one, I plan to hit the gym for a bit before going for tx. Any reason this is a bad idea?

    (8) I think I'm pretty good on what people actually do during the infusion but welcome suggestions. My MO pointed out they "have *great* wifi". She said some people actually bring laptops and work. I'm thinking maybe just an iPad to watch some Netflix or whatever? And maybe the newspaper? How much can you move an arm with an IV in it? I've only ever had them for surgeries and was always super careful not to move that arm much, but my guess is you can actually be more cavalier about it.

    I know this was long, and will definitely ask these questions during my education session, but I'd also welcome any responses over the weekend. TIA!!"

    *I was told on the other thread that the Claritin is for people getting Neulasta, which I will not be. Also, which day after tx would you say is your worst? Trying to figure out timing for an upcoming reunion.

  • debal
    debal Member Posts: 600

    Welcome Ingerp, everyone's experience is different but some things are standard regardless of the chemo agents used. Hydration is huge. My second treatment is tomorrow and I will drink at minimum 64 oz of water today plus a small Gatorade or juice. Adding a splash of lemon helps. I drink that much the day of through day 4-5. Taper a bit after that but still stay hydrated. Treatment room is cold so bring a blanket ,dress warmly. I over packed the first time and wont do that this time. With my treatment i'm out in under 4 hours. Leafed through a magazine, talked to hubby and nurses. Closed my eyes listened to music for a bit and it was time to go. Light breakfast is a good idea. They let you go to the restroom during but will need to disconnect infusion for safety reasons so I made a quick trip in between chemo agents. I sucked on lemon drops most of the time to to ward off the metal taste. IV shouldn't restrict you much. I brush my teeth after each meal when I'm home and biotin mouthwash works for me. I'm sure u will get an education handout with instructions with a phone # to call with additional questions. GA warrior, Dee...or anyone on the neulasta..how are you all doing? I started my claritin yesterday and will continue thru day 10, that's what I did last treatment. Onco said I could take as long as I wanted. I had zero side effects with neulasta at all. No way to say if it was the claritin but I don't want to find out so I will do the same this time and see how it goes!! I hope everyone is feeling better!💗

  • ingerp
    ingerp Member Posts: 1,515

    Deb—great info. Thanks!!

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