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Chemo starting April 2018

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Comments

  • Djt
    Djt Member Posts: 176

    astyan...yes, thank you. My only solid food yesterday was a half an English muffin with peanut butter. I hope to God this awful tastes fades. I made my other half meatballs and sauce and tasted it....,,holy moly.... my Italian cooking skills are on hold for sure

  • Djt
    Djt Member Posts: 176

    duffysmom, hows it going? Are you able to drink the water. Do you find that you sleep very lightly, or not af all.? Im hoping this is going to pass..,,

  • urdrago71
    urdrago71 Member Posts: 500

    djt- are u taking steriods?? I don't. Yes, I have the prescription it's filled but Ive never taken it and I can sleep. I mght have to get up at 2 to pee bcuz of so much fluid intake. But my choice is not to take so much medication and try to keep as normal as possible. Unsure how it would impact the SE ..

    GA warrior -have a grand time you deserve it!!

  • astyanax66
    astyanax66 Member Posts: 223

    DJT, this week, food has tasted better. I don't know if that will make a difference, but I was able to eat a few more different things. It's still not "normal," but way better than after treatments 1 and 2.

    Dee

  • ElizB
    ElizB Member Posts: 28

    Hi !

    Djt am so sorry to hear about your misery. I am on A/C and have not had that awful mouth problem. The Big red gum may mask it. Does any type of soda or Koolaid type flavor sound good?

    Ast/Djt. Or question to anyone- why won’t the MO give you a stronger pain med for this awful bone pain ? Even Just temporarily?

    🙏 Bets

  • ElizB
    ElizB Member Posts: 28

    I just posted something- and have no idea where it went! Djt I am so sorry to hear about the water/ mouth issue. Does any type of soda sound good ( flavors). My angel neighbor the Chemo nurse said if you feel lousy and that you may be dehydrated call and ask for IV fluids. The IV fluids will make a huge difference in how you feel. Maybe dehydration is making the bone pain worse??

    🙏 Bets


    Geez found the post, deleted it

  • EncoreKennel
    EncoreKennel Member Posts: 5

    Hey Ladies!

    Finished round one A.C. on 4/25. Neulasta on the 26th. Started the Claritin D the day prior to chemo day and still daily... so far no pain from the Neulasta. I noticed one of my nausea meds says Headache for side effects... and yep I have a doozy! Alleve helping though! Not much by way of appetite... but enjoying watermelon to help with fluids. For some reason the only other thing am interested in ... is pudding (sigh) I feel like most things taste like rotten eggs.... so sucking Jolly Ranchers has helped in that regard. Also lots of mouth rinsing... after every meal I brush and rinse with Biotine, and extra rinses in between as well. Seems most of you are dealing with about the same issues. We CAN do this! Blessings and Hugs!

  • Djt
    Djt Member Posts: 176

    hi encore, welcome and thanks to you about jolly ranchers, I may try them. I ate some toasted cinimmon raisin bread with butter tonight, and it was the food of the gods!

  • astyanax66
    astyanax66 Member Posts: 223

    DJT—I’m so glad you found something that tasted good! It was pretty horrible those first 2 weeks for me. I think I’ve just gotten used to no taste buds, lol.

    Encore, glad round one is done! Rice pudding has become a mainstay for me. I’m guessing I will never want it again after chemo!

    Dee


  • duffyzmom
    duffyzmom Member Posts: 217

    Trying to catch up. Last 24 hours have been rough and wonderful. The SE intensified last evening into that holy cow I'm dying in the bathroom exploding from both ends. Helpful Hubby says - remember last time day 4/5 were your worst. Thank goodness for Immodium and Zofran. I was able to make it to son's college graduation.

    Mouth seems better today. Yes I've been using the Biotene and the Xylimelts. Metal mouth luckily I don't have but did last go around so I understand that frustration. Some swear by citrus infused water. For me I find that just making sure water is mostly ice makes it easier to sip. And I've been doing a lot of popsicles, also hard ginger candies call gin gins.

    Welcome Encore.


  • limnogal
    limnogal Member Posts: 100

    Hi, ladies-LimnoGal checking in from the April 2016 Chemo group. I have a suggestion for taste/appetite issues. You might want to check out Rebecca Katz’s Cancer Fighting Kitchen cookbook. There are a lot of hints for dealing with the metallic taste/lack of appetite/etc., and some great recipes. It is one of my go to cookbooks.

    That said, I could drink ginger tea and a boatload of filtered water during chemo week. I had to buy a water filter because we have VERY mineralized water here and I could taste every one of those minerals!

    Best of luck to you all. You WILL make it through this

  • Djt
    Djt Member Posts: 176

    urdrago, thanks....actually, I did have to take the steroids 3 day span, before during and day after infusion. I'm now in day 6 ,...it's a new issue daily. Of course, today I wake up with white tongue and diahrrea. ON TO MORE ACTIVIA. Just got to cope the best I can, the best we all can.

    Eliz.... Dee, and all...,, hope..., Sunday can be a good day for you ALL. DUFFYSMOM, SO glad you got to your sons graduation, congrats, I just keep telling myself, One day closer to the end of this treatment. One day closer. And NOTHING STOPS TIME. THE end of this WILL come.

  • duffyzmom
    duffyzmom Member Posts: 217

    Thanks LimnoGal - I'm going searching for that book now.

    Thanks DJT - and GAWarrior - I hope things are set for your cruise and all goes great.

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

    Good morning ladies,

    Off to AC 3 today in 4 hours. I dont know whether I want to rush to the clinic and get it done with or run away and hide.

    Djt good to know you found something to eat which You like. Duffyzmom, glad you made it to your son’s grad. Hope you are feeling much better. Urdrago, good to see you here, I was wondering how you were. Thanks Limnogal for the tip.

    Encore, you are right, we can do it, we will do it

  • astyanax66
    astyanax66 Member Posts: 223

    Duffyzmom, great news on graduation! Congrats! But sorry about se— thankfully, I just had the “end” results. MO had me start Imodium prophylactically and that has helped.

    DJT, it was a good day— a friend brought flowers and sang and we played games most of the day.

    Frog, I hope all is going well. Is this is your first visit? I can’t remember...regardless, I hope all goes well. The first time was the most intense for me, but all have fine. I do 4/12 on Tuesday.

    Dee

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

    Thanks Astyanax, 3rd visit. I am right now in my chair getting the infusion. After this I have one more AC. Then I start 12 weekly Taxol.

  • Djt
    Djt Member Posts: 176

    hi all....hoping that today...day 7 may turn o ut a bit better. But I woke up to total white tongue, sore throat and diahrrea. Nurses said it's thrush, liquid nystatin, and swallow after swishing. Again taste. ,,....wow horrible.

    At least sleeping whole night ..Best ladies.

  • astyanax66
    astyanax66 Member Posts: 223

    Thrush is soooo annoying! How is Imodium working? Sorry that this has been a tough day. :(

    Dee

  • astyanax66
    astyanax66 Member Posts: 223

    Frog, I love a show set in Auckland—The Almighty Johnsons. Wish they’d kept it going. I go in for round 4 of Taxol tomorrow, so that will be 4/12 or 1/3 done. Heading to see the Avengers tonight.

    Dee

  • ElizB
    ElizB Member Posts: 28

    Oh Djt, I am so sorry about the thrush and diarrhea. I hope this clears soon for you.

    Glad everyone else is carrying on Frog Im just a little behind you - A/C 2 last Thurs. I keep telling myself I can do this - sometimes hour by hour.

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

    Djt, I hope you are feeling much better as I write this.

    Dee, enjoy the game.😀

    Eliz B, hang in there... the good week is about to begin. How is the ear ringing this time? I wear ear muffs around the house. My ears are so sentivite to noise. I can hear every drip, creak, everything plus the ears ringing.

    I had a full day today, got the neulesta shots and the Zoleda implans. Went for the genetic testing consultation. I am so done. Also, last time 2nd day I had loose motions, so this time I was all prepped for it. This time, constipation.😂

  • Djt
    Djt Member Posts: 176

    good morning, Frog, Eliz, Dee, duffysmom.....And all..... Imodium is a godsend, and the nystatin is working pretty good for the thrush. But a generalized question for you ALL. Do you have trouble feeling like YOU? I mean.. it hard for me to move through the day with my normal energy, verve, and a feeling of embracing my normal tasks. Maybe cause I'm prob older than you guys. Idk. But sometimes it's like I telll myself..... ok, get up....MOVE, EAT, GO OUTSIDE. !! if even let my walks go for 3 days. I hope it goes away.

  • duffyzmom
    duffyzmom Member Posts: 217

    Hi all! Dee no spoilers! Son and I watched Winter Soldier last night because he and his fiancee were doing a Marvel Movie Marathon and now that he's home he wanted to continue. I'm hoping to see it this weekend when I get back to Canada.

    DJT - Sorry to hear about the thrush. My mouth issues are now better just some sores on several spots. I'm also living on Imodium now. 4 days of diarrhea and unfortunately a couple episodes of bowel incontinence (not happy about that at all). I'm going to post over in the TCH thread but if anyone has any tips on combating this I'd appreciate it. I've actually considered getting some adult diapers or pads today because I'm afraid to leave the house now.

    My dog is back from the Kennel so I am getting out for walks which helped with my spirits yesterday (well that and son being home from University)

    Frog - aren't the good weeks the best. Today is Day 7 and I'm hoping by day 10 I'm close to good. Yesterday I was calling the day a 7/10 but that was with the aid of Imodium.

    I'm hoping GAWarriors absence means she's loving life on her cruise.

  • ElizB
    ElizB Member Posts: 28

    Good Morning all- I’m so glad some of the awful Se are subsiding for you. Djt you are not alone in how you are feeling. This whole thing consumes me at times and brings on immense sadness. And I think it’s normal to have to push yourself through the simple daily activities.( I have to) I have found I ( unknowingly) was surrounded by cancer survivors that shared after my diagnosis. They are normal happy woman who have their lives back! I hold on to this and remind myself that this poisoning of my body will end. I WILL feel good again. I’m 56 this month. I spoke with a Nurse Practitioner ( psychology) and she told me she often prescribes a mild antidepressant through the treatments - she said it’s very beneficial during a life altering event like this. I’m seriously considering it.

    Duffy I am so constipated- but I would hate the diarrhea. Are you able to eat and drink- it’s very dehydrating.

    Frog- I’m going to try the ear muffs good idea! It’s crazy isn’t it? My brain is hypersensitive and foggy at the same time!!





  • Djt
    Djt Member Posts: 176

    eliz....duffys mom. Thank you your words mean a whole lot right now. Yes, it is life altering, profound, and at times, unbearable. But somehow it will pass and we too, will be one of those survivors who we didn't know were fign't ing this fight.

    Last night was so bad my significant other was about ready to call an ambulance, but he got me through the night. Today, I did my walk, sat in the sun, ran errands, and ate a hamburger. I thank God for every good day. I had read on a woman's blog that she loved DAY 8. Maybe that is the magic turn around number. I hope you guys have more good than bad, for sure.

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

    Djt, so glad you are feeling better. To answer your question, yes, yes and yes. I am on Day 3 and Day 8 seems so so far away. I will want to do something useful around the house and give up even thinking about it. I just lay in the bed or on the couch and hope by the time my kid and hubby come home I can manage a few smiles and feel a bit normal, for myself and my family

    I am so happy for you guys starting on the second week. Make the most of it.

  • ElizB
    ElizB Member Posts: 28

    Djt - i am also so glad you had a better day- i hope you are still taking some fluids? Frog- just let your body rest! Im praying for day 8 to get here fast! Dee and Duffyzmom hope you are having a good day!

    Betsy (Elizb)

  • astyanax66
    astyanax66 Member Posts: 223

    Hi, all--round 4 done. I did have to play "port aerobics" (knee bends and waving my arms around), but no problems after that. It was sort of amusing. ;0

    No spoilers, but...hmmmmm is what I say re: new Avengers movie. Duffyzmom--I LOVE Winter Soldier. As in, I watch it repeatedly. Great movie! I swear, Marvel, DC, and Lord of the Rings are my go-to movies during infusion.

    Frog-on-the-lilypad, I had the Mammoprint testing, and the results were quite detailed and helpful. The genetic counselor also explained everything clearly. Definitely ask if you have questions--it's a lot of info. I had to look up a lot of the terms.

    DJT and ElizB (Betsy): I am almost 52. I feel much more scatterbrained than usual, but I have taken to writing down everything, and have lots of lists (I got a friend to help). I know I repeat myself a lot (I sort of do the coordinating of the household and work FT teaching as well). My students have really surprised me--they didn't get weirded out or act differently; they were patient on my 'slow' days. I was fairly proud of them. Djt, I am so sorry about the side effects going, er, from one extreme to the other. My NP did say that if Imodium wasn't sufficient, she could prescribe Lomotil (but sound like that's not the one you need this week).

    OK, my BFF arrives on Thursday (and wow, does she pamper me AND the boys--like making them loads of food and a gazillion freezer meals), and my son gets his 2-year college degree at 16 on Friday night--our college president asked if I'd like to hand him his diploma. (He then graduates from high school the first Saturday in June and starts at university in the fall as a junior in biology/pre-med--it's an odd path, but he's happy). So, it's an upbeat week fo the family, and I'm going to take it easy in anticipation of Friday night. :)

    Y'all hang in there!

    Dee

  • Djt
    Djt Member Posts: 176

    duffysmom, I'm glad for you that Duffy is back home with you, I'm sure it's a great comfort to have him by your side. So awful about diarrhea...,it got to improve sometime...have you. tried the BRAT diet? Bananas, rice, apples. Toast ? I know, I don't like to go out much any more either.

  • maggie2
    maggie2 Member Posts: 240

    Djt especially, I can relate to you ready for an ambulance. Thursday was my first chemo. I just wasn’t prepared for how hard it would hit me. The doctors kept saying “some” bone pain, “some” nausea, etc. This is the first that I’ve felt human enough to try to catch up with all of you. My blood pressure dropped very low (86/56). MO had me call the primary care doctor since she’s the one that prescribes those RX. I was told to continue to monitor it and it’s fine as long as it’s 90/60 or above. Luckily, now that I’m up to hydrating, it’s been generally fine. I think the excruating nonstop headaches were one of the worst parts.

    Anyway, have any of your MO reduced the dosage at the next infusion or slowed down the rate of infusion? Also, do SEs usually get worse with each treatment?