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March 2020 Chemo

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Comments

  • Nooch40
    Nooch40 Member Posts: 22

    Good morning !

    OMG etnasgrl!!! That had to be so incredibly scary!! It game me goose bumps reading your post. I am so glad you are ok. I had no idea 60% can have a reaction during the second one! That is a pretty high number. I am also glad you don’t have to be away from your family.

    I have a friend tell me to ask for extra iv fluids prior to my treatments. So every treatment I get 500cc of fluids prior to my chemo to keep me hydrated. Not sure if it’s helping or not.

    I am feeling ok today. I might be coming down with a little cold 🙁 my kids were a little sick. It amazes me bc I haven’t been anywhere except for chemo in the past 2 weeks.

    I am mad at the cancer center where I go. The lady in front of me checking in stated she was tested for the virus but didn’t have results back yet and they let her in! All they did was make her wear a mask. I have no idea if she was the patient or family member.

    Helenlouise I have a question for you. I read that you have skin Mets, what does that look like? Is it a mark that showed up on your breast or is it a mole that has cancer?

    Hope everyone has a good day today.

  • etnasgrl
    etnasgrl Member Posts: 185

    Julie.....I found you on Facebook, but there was no option to send a friend request. If you can find me on Facebook, I am "Karen Elizabeth", please send me a request! If you can't find me, I am also friends now with Cassandra, so look through her friends and find me that way.
    I am really looking forward to connecting with you ladies on social media, it's such a great way to stay in each other's lives through this mess!

    Oh and I forgot to tell y'all, I lost 4 pounds from last week's infusion!! Honestly, I'm not surprised as everything started tasting bitter and metallic. I was surprised that it happened SO quickly. I mean after only ONE round?? Have you guys noticed a change in taste? I won't complain too much though as I could stand to lose a lot more than 4 pounds, lol!

  • sharlyn25
    sharlyn25 Member Posts: 15

    Hi all,

    Chemo today was only 2 hrs. Last week (my first) was 4 1/2. So happy for that.

    Regarding the leg pains, aches and zaps, they said that is common and is caused by the white blood cells in your bones working overtime to create new cells. She said to take Motrin, Tylenol or whatever over-the -counter you normally use. Also said that if it starts 48 hrs. later, try to get ahead of it 12 hrs. before it usually starts. Then if that doesn't work, call her.

    I also didn 't have any reaction to the Taxol today. I mentioned that I was aware that that sometimes happens. They said that if it happens, it is usually random, maybe the 2nd infusion, maybe the 9th, just whenever, but not often but they are aware and prepare for it. Oh joy!

    Best of luck to all. Stay Safe. We will all get through all of this!

  • armom4
    armom4 Member Posts: 82

    Hi all. Posting here because I have a similar treatment experience. Started chemo today. First time ever. Taxol + Herceptin. First, I had a reaction to the Emend nausea premeds. I felt really nauseous, then my face and neck turned bright red and I got really hot. Then came shortness of breath. I told the nurse as soon as I felt it coming so they were on top of it. They stopped it and switched to another. Herceptin went in with no problems. Then came the Taxol. Within seconds, literally a few drops in, I had the same reaction. They stopped it, flushed the lines,and ran more benedryl and steroids. Then they started Taxol again very very slowly. What was supposed to take 3 hours took 6 hours. I could even finish because it was time to close! I was told I could stop having this reaction or it could happen more. They'll start slow again next time and slowly bump it up. So, reactions can happen the first time too!

  • etnasgrl
    etnasgrl Member Posts: 185

    Hi ARmom4!! Welcome!!

    Smile
    Yes, it can happen on the first infusion, I'm so sorry that it happened to you. It's such a scary experience, at least it was for me. But, those nurses are so incredible!! They are on it and act so quickly.
    If you do happen to have another reaction, (which I hope you don't!), ask them to start it back up slowly for 20 minutes, then bring it back to the original speed. That's what they did for me and it worked fine. My nurse told me that most times if they reintroduce the Taxol on a slower drip for 20 minutes, it gives the body time to "accept" the chemo without freaking out. Once it has accepted it, you can bring the drip back to it's original speed. I suggest that so your not stuck at the infusion center for 6 hours again! It's worth a shot anyway.

  • sharlyn25
    sharlyn25 Member Posts: 15

    ARmom4, so sorry you had several nasty reactions at your first chemo. Hopefully, it gets better from here on in. Different for everyone, that is for sure. At least they have all that down in your record so they will be very prepared for you next time. Best of luck! God Bless you, dear!

  • helenlouise
    helenlouise Member Posts: 363
    Hi all, thank you for asking after me. That will teach me for not reading for a few days. So much news from you all. Etnas and ARmom how scary with the reactions. Its incredible how different our bodies are.

    I found my second treatment quicker as it was taxol only. Must say I am glad to have a week off. My nose is sore and bloody, my hands and feet a little more tingly than usual, my mouth tender, taste is weird and lips feel like I have cold sores about to break. Aside from that I’m quite well.

    I too have been awake at all hours. The MO has me halving the steroids for next dose so hopefully they will still work and I won’t be as wired for the few days. Port has settled but still protrudes a lot, so very glad it is not in my arm. Hair is going to go soon (just a little tug and it comes out) but I am expecting this and have wigs, scarves and hats ready to go.

    Covid 19 is causing issues here in Australia but things are not as dire as other places around the world. As I live in a rural city things aren’t quite as crazy (yet). Treatment at the local cancer center is geared up to deal as best as they can. Bit sad to think going for chemo will be a social event of the week

    Isolation is not new to me having been through IV chemo in 2018. Just not use to EVERYONE else having to do the same and ALL the time. It’s unbelievable what is happening.

    Don’t forget to take extra special care of yourselves ladies, we are all high risk for a poor outcome should we get infected whilst immunosuppressed.

    Good luck & thanks for sharing. Xx
  • etnasgrl
    etnasgrl Member Posts: 185

    Had my third Taxol treatment yesterday. Had another allergic reaction, exactly like the first.
    They stopped the Taxol, administered extra Benadryl and steroids, then started the Taxol again on a slow drip for half an hour. When I didn't have another reaction, they brought it back up to the normal drip. All went well.
    My oncologist called me later in the afternoon to tell me that it is very probable that I will have a reaction at each infusion, so to prevent that from happening, at my next infusion, they will do the slowest drip possible. Doing that, will hopefully trick my body, so it doesn't realize the chemo is being infused. She said this method works about 80% of the time. It means instead of an hour, the infusion will last 3. I have a hard enough time icing my hands and feet for 1 hour, I can't imagine doing it for 3! I will, of course, but am SO not looking forward to it.
    If this method does not work, she will have to switch me to a different chemo and start the cycle from the beginning.....so I am REALLY hoping this slow drip works!

    How is everyone else doing?? Please update when you can!

    SillyHeart

  • armom4
    armom4 Member Posts: 82

    Etnasgrl: Had the same reaction today to my second infusion. They started as slow as possible and I still reacted. My MO said no more Taxol. We'll try Taxotere next week and if I have a reaction again, no chemo at all. Herceptin only. Today was really bad. Worse than last time. I started sweating and my back started hurting. Then it got hard to breathe so they gave me oxygen. My blood pressure had 3 digits on the bottom! It was really scary. Hopefully you'll do fine next time but I wanted to share my experience. Good luck!

  • etnasgrl
    etnasgrl Member Posts: 185

    Oh ARmom4, I am so sorry that this happened to you too! ((((Hugs)))) It is awful, isn't?! Ugh!

    Hug

    My MO told me that if the slow infusion doesn't work, she will take me off Taxol and try a different chemo. She didn't mention which one. I'm hoping the slow infusion works because other than the reaction, my side effects have been manageable and not that bad. I have no idea what side effects may come if I have to ty something else.
    And yes, I forgot about how BADLY my lower back hurts doing the reaction. My God, it feels like someone kicked me HARD, it's terrible!

    Thanks for sharing your experience with me. I'll be praying for you, that you respond well to the Taxotere and have zero issues. Please update after your infusion! I will be thinking about you!

  • armom4
    armom4 Member Posts: 82

    Thanks for the hugs and prayers! Back at you!

  • Jettie
    Jettie Member Posts: 63

    Morning all, Etnasgrl, so sorry to hear about your reaction, that must be really scary.

    They dropped the Perjeta on my last infusion, due to the chemo rash, so this time its been a lot easier for me, I did get them to up the pre meds though based on everyone's comments and they gave me extra on day 2 before the Uednyca.. My main concern atm is work and health insurance, as our main customer at work are hotels and restaurants :( not sure if i should take short term disability while i can or still hold out until surgery in June/July. I did get my FMLA form completed for a week off during chemo week.

    hopefully everyone is doing ok considering, take care of yourself and your loved ones :) be safe!!

    virtual hugs to everyone

  • helenlouise
    helenlouise Member Posts: 363

    jetti, can you explain your reaction to perjeta pls?

    Many thanks in advance,

  • helenlouise
    helenlouise Member Posts: 363

    whoops! Explain was the wrong word. Can you describe pls

  • Nooch40
    Nooch40 Member Posts: 22

    Hi ladies!

    Etnasgrl and armom4 -I am sorry you had another reaction. I had mild reactions with the first 2 so this past time was my third treatment and they increased my steroids and I didn’t have a reaction. The first treatment , I started having a cough, the second treatment I had chest pain the last 10 min. They said they would switch me to Abraxane if it happened again. I guess this is a lipid version of taxol , it is a milky white drip.

    My hair is falling out so bad today. 😭 I knew it was coming but it’s still sooooo hard. The other side effects I’ve had are an achy lower back and shins. Food is starting to taste weird but that is better today. My teeth and gums hurt the one day. And daily bloody/runny nose. 9 more times seems like an eternity

    Hope everybody is doing well this weekend!!

  • etnasgrl
    etnasgrl Member Posts: 185

    Hi Nooch!

    Smile I have heard of using Abraxane when an allergic reaction to the Taxol is unavoidable. It's been mentioned on these message boards several times and I did a few Google searches on it as well. From what I have read, some insurance will not cover it because it is much more expensive than Taxol. But....if it can be shown that a severe allergic reaction took place during Taxol infusion, they may cover it. Not sure if that is correct, but I can always call Cigna, (my insurance company), to find out. I've been thinking of asking my MO about switching me to it if I have another reaction next week, even on the slow drip.
    I've had the sore back too and achy joints/muscles. Food started tasting weird to me since the first week.....it hasn't gotten any worse and some foods still taste normal, but it's trial and error to figure out which ones. And I've the bloody nose too. Fun times, huh?? LOL!
    ((((Hugs))))
    You are SO right....9 more times since like FOREVER!!!
    Just remember, you are NOT alone, we are in this TOGETHER!!! We'll get through this!

    Hug

  • dup403
    dup403 Member Posts: 15

    Hi everyone! I’m day 6 and it’s quite the ride... mostly tired, no energy hungry but no appetite so resting when I feel like it, eatting waterever seems good and drinking water, fruit juices which are super cold!

    Question for anyone on the dosetaxel, cytoxan, Herceptin, anyone get red armpits?? Crazy question but this popped up this am. No rash just a nice bright red? Thanks

  • etnasgrl
    etnasgrl Member Posts: 185

    Dup403.....yes!! As a matter of fact, I just noticed last night that my left armpit is red and "raw" looking. It doesn't hurt, thank goodness, but it was never like that prior to treatment. I am on my third Herceptin.

  • dup403
    dup403 Member Posts: 15

    etnasgrl thanks for letting me know you are experiencing the same. Mine is both armpits and just a “nice" tomato red... all kinds of things to look forward to! How have you been feeling? I have had the achy tension filled muscles, the sharp pains in my hips, headaches and a lovely drippy nose! We shaved my head the other night as it was so sensitive and tender now just waiting for the rest to let loose but felt so much better after it was done. I have to say that this is such a great place not only for support but to throw these silly questions out there and know that you aren’t the only one

  • etnasgrl
    etnasgrl Member Posts: 185

    Feeling okay overall.
    I had a killer headache yesterday, that lasted pretty much all day long, but is gone now....thank God! Also have the achy muscles and joints on and off and nosebleeds too. Other than that, just more tired than normal. I'll be lucky if I make it to 9pm tonight, lol!
    I haven't noticed any hair loss yet, but I imagine it's coming quickly! This Thursday will be my fourth Taxol, so I should be bald anytime now.

    One day at a time.....we'll make it! I can NOT wait to celebrate that last chemo treatment, that's for sure!

    ((((Hugs))))

  • Nooch40
    Nooch40 Member Posts: 22

    Thank you etnasgrl. Today has been really mentally rough. Yesterday was the first day I kinda felt “normal” since all this started. We were outside with the kids all day enjoying the sun. And then today with the hair falling out, it was just depressing :( I am praying you don’t have another reaction this week. I didn’t realize that Abraxane might not be covered. I was kinda wondering why more people weren’t on that since there is less chance of a reaction.


  • etnasgrl
    etnasgrl Member Posts: 185

    Thanks Nooch.

    Smile
    I'm sorry that today was rough. This "journey" sure is a roller coaster and the bad days can be pretty terrible.
    It's SO hard to lose our hair, it can be just devastating. I keep telling myself it's only hair, it WILL grow back....but some days that just doesn't help.
    I'll be praying for you that tomorrow is a MUCH better day for you!

    Heart
    And thank you for the prayers about my treatment. I am so anxious about Thursday. These reactions are scary and I don't want to experience it again. Hopefully, it will all go well! And right now, I believe it's time for some ice cream, LOL!

  • etnasgrl
    etnasgrl Member Posts: 185

    Nooch…..are you on Facebook?

  • Nooch40
    Nooch40 Member Posts: 22

    I am on Facebook but I am not very good with it ! I had to join this year bc my sons teacher had a class group.

  • Jks_Indy
    Jks_Indy Member Posts: 29

    Sounds like many of us are dealing with achy pains. I haven’t been able to do much for several days. I had my second treatment last Tuesday. No energy and aches in lower back, hip pain and general malaise. It also feels like I have strong menstrual cramps but I haven’t had a period in 7 years. I didn’t have that SE last time. My taste buds are gone. Only cold drinks and cold food have any sort of appeal. I miss my coffee and hot tea....they are just blah.

    My hair is mostly gone....still have eyebrows though so thankful for that! I can no longer blame the dog and cats for all the hair around here 🤣

    I managed to get some vegetable and herb seeds started yesterday with help from my son and way too many breaks to rest. I was very happy I was able to get something done since I have been a couch potato for a week.

    Wishing easing muscles for all of us! And for everyone to stay as safe as you can in the midst of this pandemic.

  • etnasgrl
    etnasgrl Member Posts: 185

    You know what? I just want to whine for a minute......
    Chemo and it's side effects suck. Of course, we all know that. But, to me, what sucks even more, is having to go through chemo in the midst of this COVID-19 nonsense. At a time when I need support and companionship the most, it's not readily available.
    I know that many people, (even before COVID-19), go to their chemo treatments alone....but I was looking forward to having my husband and some friends along with me to help pass the time. My best friend passed away from cancer two years ago. Prior to her death, when she was in active treatment, I would drive her to her chemo treatments and we would just make a day out of it. Sometimes we talked, sometimes we just watched a movie on her laptop, but we were together and I like to think that it made her infusions more bearable.
    For me, having someone I love with me makes all of this much more doable. The nurses are wonderful and visit with me as they can, but I can't help but feel isolated and alone. Not to mention, it's incredibly scary going into the hospital, (the infusion center is in the hospital), because who knows what germs are lurking around. Am I taking enough precautions? Did I accidently touch something and forgot to wash my hands??
    All over the treatment rooms are flyers for special events for chemo patients.....massage, music therapy, makeup sessions, board game competitions, etc. All of them have been canceled. All support groups have been canceled. Even my in person office visits with my oncologists have been canceled, in leu of video visits.
    Without sounding selfish, (and I know it sounds selfish!, lol!), this is the time when I need and deserve special attention! I need that massage and that makeup session would be fun! Even just talking with other patients during my infusion would be welcome. But nope....can't do any of that.

    I have not said a word to anyone about all of this. After all, who wants to listen to me complain? When around others, like my family, and on social media, I try hard to maintain a positive and uplifted attitude. Yep, sometimes it's an act and sometimes I just want to cry and scream about how unfair all of this is.....but I don't. Until today. Today, these feelings have just left me raw and angry. Damn it, cancer sucks and if we have to go through this crap, we should at least be able to enjoy some of the perks! I decided to put this out here, in our little group, because I know that all of you "get it." We're all in this disaster together, lol!

    Hug


  • Jettie
    Jettie Member Posts: 63

    Hi etnasgrl,

    I feel ya, my dad had colon cancer last year, and is still recovering, my step mom passed away last month with stage IV cancer in the UK, all my family are there, and I am in MD/USA. This stuff sucks!!!

    I had read so much stuff on chemo on how people take family and friends with them, so arranged to have some quality time with my daughter. To only find out, cause I have my sessions in the Oncologists office, family are not allowed. The office seems to do a lot of other blood treatments, so connecting with other patients with similar diagnosis is impossible :(

    DH has a cold a week or two back so was self isolating, so only time i saw him was to see if i was doing alright and needed anything.

    And complain away... i have spent the day today running back n forth to the toilet, wondering how my tush turned into a stream of red hot lava (baby wipes are awesome!!). Which considering my work is as dead as a dodo at the moment is good, seems people are avoiding me at work even though were all working from home. I lost it last week when i was in the kitchen and throw a bowl full of dishes that were in the way in the sink on the floor and kaboom glass went everywhere... the kitchen have been significantly cleaner since (muhawahh)

    Ohh and ice cream is awesome :D i haven't eaten so much of it in years

    Helenlouise, my reaction was a chemo rash on my face that made me look like i have sever acne. It was horrendous. This round so far, my face is a little red in places but not as bad, the bone pain has been less too. still have the hair loss rocking that Sinead look, fatigue, aches, runs, but have been able to keep my weight somewhat stable, will see how it goes over the next week or so.

  • Nooch40
    Nooch40 Member Posts: 22

    Etnasgrl , you have said everything that I am feeling!!! I would love to go get a massage or learn how to paint my eyebrows on but none of that exists right now. I even told my husband that I wish I got cancer last year. This is absolutely the WORST time to be going through this. I haven’t left my house except to go to chemo. I love my kids more than anything but it is so tough with them being home. They are 6 and 4 and need constant attention. I have only taken 1 nap since starting treatment. They were suppose to be at school until this virus started. Now it is so sad but my only piece and quiet is at my chemo treatments. I really don’t believe anybody understands what we are going through except us.

  • helenlouise
    helenlouise Member Posts: 363

    Thanks etnasgrl, I too had acne like bumps on my nose. It has cleared in the week off. Will be interesting to see if it comes back with IV this Thursday and next. Thanks for sharing.

    Yep pretty tough when you can’t share with anyone. Nooch, I smiled when I read you told your DH you wish you had cancer last year. That really says lots about how much covid 19 is impacting our lives.

    At least we have here to share treatment, thoughts and have a winge when needed.

    Good luck to all.
  • Cassandra6430
    Cassandra6430 Member Posts: 22

    hi everyone,


    thank you for all your sharing I really needed it this morning. I’m on day 7 of my 2nd treatment and it’s been incredibly difficult. I’ve had severe nausea and weakness since day 3, I keep thinking it’s going to be better tomorrow just get through today but then I almost feel worse. My insurance won’t pay for neulasta so I’ve had to go in for a daily shot 5 days in a row for what I think is granix or something. At first I was frustrated but now it’s a blessing because it puts me in front of my care team and I’ve needed that. I had fluids steroids and nausea meds infused yesterday and now again today. What’s really taking a toll is my emotional state. I’m so grateful for the honesty on this thread. I have really started feeling alone. This pandemic is so sad for so many and I think I’ve just been stuffing how pissed off I am about going through this cancer crap because of how I should act. I have so many people that love and care for me but can’t have anyone come just sit with me at my house. My husband is doing the best he can but he’s working 2 jobs from home and I am not wanting to ask him for every little thing. I’m praying for extra strength to get through today. Sending love to you all.

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