Starting chemo July 2018

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  • RoseRed4
    RoseRed4 Member Posts: 72
    edited July 2018

    Hi y'all 😎 Enjoying a little fresh air on my deck and appreciating almost feeling normal right now. It's been a busy week of work, running errands and keeping up with my stuff at home, but I got everything done and I have tomorrow off ☺️ I know #2 infusion is just a few days away, (Monday) but I feel good. I know now what to expect and I am going for my treatment alone this time. Love my bf dearly, and I deeply appreciate him taking me for my 1st infusion but good grief, I think he was in worst shape (worn out) than I was by the time we got back home. Lol I really think I'll be fine going alone. I'm kinda independent, some things thru all this cancer crap I’ve preferred to do alone. I'm not nearly as nervous about #2 AC as I was before #1. I just hope I feel good again by Aug. 3rd because my son is flying in from Iowa to spend 3 days with me! So happy about that. Haven't seen him since last Christmas. I hope things go well for everyone just starting chemo and to everybody else getting ready for #2 like me. We got this! 😉 I had a few rough days after my 1st infusion, but it wasn't as bad as I expected. Drinking lots of water is so important. Take care everyone.

    Rose

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  • Ebronson19
    Ebronson19 Member Posts: 17
    edited July 2018

    Infusion number 1 is done! It was absolutely uneventful, which was great 😀 so far, the only side effect is major loss of appetite (I feel like I just finished a big meal all the time), but I did manage to eat a small dinner. Focusing on staying hydrated now.

    JaBoo, thanks for the tips about reading prior monthly group posts.

    ColoradoHolly, thank you for the positive vibes.

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  • RoseRed4
    RoseRed4 Member Posts: 72
    edited July 2018

    I guess it really was empowering when I buzzed my hair before chemo even started. Cancer took so many things from me this year, but I was determined I will be the one to control how my hair goes. I've been going everywhere with no hat either. Yeah, the stares get annoying, but oh well. Hot summer and hot flashes mean ppl will be seeing my GI Jane haircut until it all goes, and then I'll wear something when out. I've never been a hat person, so not really looking forward to that. The idea of a wig seems weird, but I have a free coupon so I guess I'll be getting one. One thing I love with barely any hair now, is how relaxing a scalp massage can feel. Trying to make the most of the positives.. I’m going to get my yoga dvd’s out again. I had ordered the Beachbody dvd’s from an infomercial, this past Spring to try to help with menopause symptoms, Tried it once, way overdid it..was sore as heck and gave up on that idea, but if it can help me thru chemo, I will give it another chance. I could tell how stretching really was important in those days afterward. I decided to buy some CBD capsules today also.

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  • JaBoo
    JaBoo Member Posts: 520
    edited July 2018

    RoseRed - my 2nd AC is on Monday too... Now I feel normal, just tired. But that's another story, I got very little sleep for 2 nights and it really takes its toll. (my kid had a toothache)

    You are brave to go without hat or anything! My hair hasn't started to go yet and I'm keeping it as long as possible. But I had it cut short before my opetation, so as not to make a big difference to the wig - I bought one with short hair.


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  • RoseRed4
    RoseRed4 Member Posts: 72
    edited July 2018

    imageI hope your child is feeling better now, JaBoo!

    It's been tough seeing myself on the security camera ever since I buzzed my hair but this morning's pic, I kinda sorta like..so thought, wth..I’ll post it. Hope everyone has a good day and a relaxing weekend!

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  • JaBoo
    JaBoo Member Posts: 520
    edited July 2018

    RoseRed, wow, I have to rephrase my last post, where I said you are brave when going out without a headcover. on the contrary, you are stylish and cool!! (I hope this sounds as I intended - as a compliment. sorry my weird Engl.)

    and thanx, the kid is making a mess as usual, the toothache was cleared at the dentist's. I slept at last.

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  • RoseRed4
    RoseRed4 Member Posts: 72
    edited July 2018

    Awwwww :) thank you! Good to hear.

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  • Jkittle
    Jkittle Member Posts: 24
    edited July 2018

    Hi all you gals,

    I'm feeling pretty good this week, after second AC last Friday. Three days of tired and I'm good now, except I have a low grade fever so I am on antibiotics now. I work as a dental hygienist and my oncologists don't want me to see patients who are ill, because duh, no immune system while on chemo. so I'm having trouble at work, they want me to clock out if we cancel a patient because they are infectious. It hurts my feelings that all they care about is not having to pay me in that case. It's a small office so the ADA may not cover me but it's still discrimination, I think. Other employees are not asked to clock out if their patient cancels due to illness. What do you all think? I need to keep my job for my insurance, so I can't leave. And forget finding a new job during cancer treatment anyway. I just feel they care more about money than me getting better. Other than that I'm doing pretty good. I love seeing my patients and giving them hugs, I know they truly care about me as I do them.

    Hope you all are doing as well as you can, I read all the updates daily.

    ❤️ Jenny

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  • Misha13
    Misha13 Member Posts: 240
    edited July 2018

    Good Saturday morning ladies!

    I “posted” two days ago and wasn’t logged in or something, so I lost the entire post! Gave up and made sure I’m logged in this time!

    I’ve been enjoying the past few days of actually feeling normal! So much better than the week prior! I even went to see a movie and did some fun shopping!

    A/C #2 is on Monday-glad to hear JKitttle that your second one went well! Ebronson I think you said your first one was good too. I am missing ppl because I am doing this on my phone and can’t go back to the previous page!

    Had a big DUH moment a couple days ago...my mouth was really starting to hurt and then I realized I bought the Biotene mouthrinse and wasn’t using it!! Since I’ve started, mouth is much better!! Anyone else had issues with a sore mouth or throat?

    Good luck to all the new people and it’s not as bad as you imagine in your head!

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  • JaBoo
    JaBoo Member Posts: 520
    edited July 2018

    Jkittle, I'm sorry to hear about those job problems, that really is inconsiderate and I can't even imagine dealing with this. Here in Europe it is very different (insurance system and all), so I can't offer an opinion to your question... otherwise, glad you 2nd infusion was manageable.

    Misha, today I took a mouthwash out of my cabinet too, my throat is a bit sore. and I noticed a slight swelling of my left ankle. I've been on my feet the whole day, but it's deff treatment related...


    Who is going Monday to get their seconds? RoseRed, Misha and me... from what I see in a few posts back...

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  • Gndvll
    Gndvll Member Posts: 47
    edited July 2018

    Good luck this week, Ladies. I'm starting number 1 on Tuesday. I'm ready to get this wait behind me, but still apprehensive. My PET scan had the mass around the same size. It also showed tiny, mildly avid areas in the L axilla lymph nodes. This is the first time anything has been noted there, but I don't expect it to change my treatment.

    Anyway, I'm going to enjoy tomorrow with the family, and try to rest tonight.

    Praying for us all,

    Gina

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  • LocalLibrarian
    LocalLibrarian Member Posts: 2
    edited July 2018

    Hi everyone! Joining in! I had the first of four dose dense AC infusions on the 18th, going in for my second on Wednesday. The last few days of feeling normal have been incredible. I had a bilateral mastectomy with axillary node dissection and direct to implant reconstruction on July 3rd, so managing that recovery while doing chemo added to my challenges last week. My body is definitely feeling feeling day by day, I’m hopeful second round will be easier now that I can used a bit more bit more of my arms.

    Anyone else experiencing agoraphobia in response to chemo? The first few days after I felt literally afraid to go outside. (Not normal for me!) I have an anti anxiety med that helped, am hoping that was a first round response...

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  • RoseRed4
    RoseRed4 Member Posts: 72
    edited July 2018

    I had issues with a sore throat too. Lasted for about a week. I had bought the mouth rinse, but only used them a few times. Will use it more regular after #2 infusion.

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  • Hughope1
    Hughope1 Member Posts: 129
    edited July 2018
    1. having a port put in on Thursday and starting chemo on Friday. Looking at 6 rounds of tchp. Very nervous about all of this. I will be taking zarxio shots and dexamethasone. Has not given me anything for nausea yet and supposed to pick up some Zyrtecs. does anyone have any suggestions to what else I need to have here before this starts. seems like the ladies in this forum have already had surgery I'm having chemo first.
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  • ColoradoHolly
    ColoradoHolly Member Posts: 14
    edited July 2018

    Hughope I am also on six rounds of TCHP before surgery. I would definitely talk to your doctor about anti nausea meds... You should have them on hand. I have two prescriptions, one that I take the day of and day after chemo, and the other that I take on an as needed basis. Ativan (anti anxiety) is also very helpful, I would ask for that too if you aren't against the idea. For me, it helps with sleep and also has anti nausea benefits. I asked for an infusion of Ativan prior to my first chemo infusion and they were happy to provide it. It kept me calm throughout the long first day (I am cold capping so my first day was almost 9 hours!) and made it much more tolerable. I'm sure many other ladies will chime in with some other suggestions. We will all get through this together! I'm happy to answer any other questions you may have

    My second infusion is Tuesday, good luck to everyone going in this week!! Hugs to all.

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  • Fixyourdog
    Fixyourdog Member Posts: 26
    edited July 2018

    I haven't had any mouth sores so far (after 2 TC's), but I have been using Biotene toothpaste and a baking soda/salt water rinse. I've got a bottle of the Biotene mouthwash and will use that if I get any sores

    Taste is definitely starting to go again: made a corn-tomato-red onion-jalapeno-cilantro salsa and it tasted like....nothing.

    Good luck, Monday mavens....I'm a Friday female!

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  • Nicole1966
    Nicole1966 Member Posts: 63
    edited July 2018

    Hello everyone, Nicole here. Feeling depressed. I keep posting that I’m struggling and either they are not getting posted or I’ve been blacklisted. Since I’m pretty sure it’s the early part I’ll post one last time.

    I’m having a hard time. We have fires 🔥 going on and out air quality is hazardous. I have had a headache since my 1st AC infusion. Well about 6 days after treatment my diverticulitis flared up and has been keeping me doubled over in pain for 4 days now. I really need to know if this has happened to anyone? I’m beat. Afraid to eat? Any answers? I feel weak

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  • Jkittle
    Jkittle Member Posts: 24
    edited July 2018

    hi Nicole! I’m sorry you are feeling depressed. I hope you find something to help lift you up very soon and you can focus on it. The air quality and fires sound scary and I’m sorry you are dealing with that as well as the diverticulitis all during chemo! I’m not sure if you know who Mr Roger’s was, but he always said in scary times, always look for the helpers. Focus on those who are trying to make a situation better- and find joy in that if you can. I wish I could offer something more. Hoping things get better quickly for you

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  • JaBoo
    JaBoo Member Posts: 520
    edited July 2018

    Nicole, I'm sorry to hear about your strugles with your other condition - I hope you will be able to find relief, maybe call your MO and work out some plan... sounds scary and amidst fires too! Are you on a 3 week cycle?

    Hughope, what are the Zyrtecs for? (I mean I know they are for allergies, I just ask whether they have some other use during chemo as well)

    I'm now sitting in my chemo recliner and the red devil is dripping - my 2nd AC. I had a really long wait today to see the doctor prior to chemo. She informed me my ekg is normal, but neutrophils are a bit low. So I will receive more growth factors this cycle - 3 shots of filgrastim.

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  • Hariry
    Hariry Member Posts: 138
    edited July 2018

    Hi there,

    I was diagnosed Nov last year. Disheartening to see new groups (meaning new patients) every now and then. And it seems that most of us are at our forties, still young!

    I've completed all the treatment- surgery, chemo and radiation. Now as I look back, the past few months was not that bad. Not as bad as I thought. The first week after diagnosis was hell. Mainly because I had no idea what I'm gonna face. It's true, like the other sisters said, do expect fatigue, intoxicated, mouth ulcers, poor appetite... but I think IT IS doable. Even for those more senior. I nearly cried when I saw my hair fell. Now I'm seeing them growing. And I hope to let my wig retire in couple of months😉

    People around us showed their concerns, and sometimes it could be annoying. It's okay. No one would really understand what we're going through. They only want to show that they care.

    all of you are in very good spirit, staying positive. I'm so sure you'll be fine! I keep you in my prayers.

    Hariry

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  • RoseRed4
    RoseRed4 Member Posts: 72
    edited July 2018

    imageYay, got the window seat! #2 AC on the way.. Bf is stopping by with a McD’s yogurt parfait for me soon 😍 Hope everyone has a good day.

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  • Hughope1
    Hughope1 Member Posts: 129
    edited July 2018

    Hello Hughope here, thank you for the shout out. Blood work tomorrow, port thur. and 1st round of chemo friday. I will talk to my team thur. about anxiety meds. and nausea meds. Walking late at night has become my new friend. LOL I was vary interested in the cold cap therapy, but it is so expensive. My one prescription Zarxio is 1427.00 every three weeks. I have always had really long hair, I'm sure that is going to be quite the shocker for me. Nothing like getting old fighting cancer, and losing my best feature. LOL.

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  • Hughope1
    Hughope1 Member Posts: 129
    edited July 2018

    Hang in there Nicole, They have me starting with Zyrtec 10 mg tablet over the counter- take 1 tablet one hour before chemo. Your guess is as good as mine. I am going to log in to my doctors orders and post for you.

    Dexamethasone 4 mg tablet - take 2 tablets by mouth twice daily for 5 doses begin the day before chemo.
    Zyrtec 10mg- take one tablet one hour before chemo.

    Zarxio injection- inject into sub-Q tissue as directed by infusion nurse once daily for 5 days. start taking on 8/5-8/9.

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  • ColoradoHolly
    ColoradoHolly Member Posts: 14
    edited July 2018

    Just finishing up my second round of TCHP. I practically slept throughout the entire thing. Cold capping was the same experience as last time, but I was smart and brought warm enough clothes this time. Still haven't seen any serious changes on the hair front yet. Hugs to every one!!


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  • Gndvll
    Gndvll Member Posts: 47
    edited August 2018

    Hey, just checking in.  I had my first AC chemo today.  I started Claritin Day 0 through Day 5; Then today, I got Solumedrol, Decadron, Emend , Adriamycin, cyclophosphamide, and another long acting anti-nausea med.  Infusion was easy-peasy, and the only thing I noticed was my ears got warm.  :)  I just ate some chicken pot pie, so we'll see how that goes.  I'm full, pushing water, and dancing on Decadron.  Insomniacs, here I come!  <G>

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  • JaBoo
    JaBoo Member Posts: 520
    edited August 2018

    I noriced more of you taking antihistamines around infusions... is this from your MO?

    Gndvll? Hughope?

    I'm taking Claritine around filgrastim injections and so far I haven't had any bone pain. My MO never heard about it, but said OK to taking it.

    How many filgrastim injection do you get? I see Hughope gets five of them... what about you others? I got just two in my 1st cycle and my neutrophils are low. This cycle I'm to receive 3 injections, but I wonder whether I should push for more...


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  • Misha13
    Misha13 Member Posts: 240
    edited August 2018

    Good to see you all!

    Nicole-I’ve had three posts disappear because I use my iPhone and I didn’t realize I wasn’t logged in. I’m sure you’re not banned. :)

    Thank you Hariry for your story of being finished! I really needed that today! For some reason day 2 after infusion has been the worst!!

    One thing I did differently this time was to make a huge smoothie which I drank during the red one and my throat and esophagus don’t seem to hurt this time.

    JaBoo-is filgrastim the same as Neulasta? That’s the on-body injection I get the next day. I also take Claritin per MO.

    Glad your infusion went well Gndvl!

    Many have mentioned hair-literally as soon as I got home from a/c #2, mine started falling out. My kids have enjoyed pulling it out in clumps! Going to have DH shave it tonight.

    Carry on ladies!! We got this!

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  • JaBoo
    JaBoo Member Posts: 520
    edited August 2018

    Misha, I also ate during chemo dripping this time. And I think it was better this way. This time, I ate a lot more before chemo, during chemo and also in the days immediately afterwards. And the nausea was much better. I discovered that I was slightly nauseous the first round mainly because I was hungry - since everybody around was recommending very light meals. But with my BMI of 19, when I'm hungry for a few days, I really get nasty nausea and cravings, there are no big reserves to take from. So this time, I ate a nice lunch of broth and wiener schnitzel with mashed potatoes after chemo and was feeling quiet well.

    Filgrastim is different than Neulasta (peg-filgrastim), I think Neulasta is longer lasting and only one shot needed. filgrastim (Xarcio, Neupogen, etc.) is given in more injections, it doesn't last so long. I get 3 injections this cycle, but since I see Hughope is getting 5 of them, I think I will push for more for me too.

    My hair has started to go in large chunks on Sunday (the day before my 2nd AC). It's Thursday and I still havent shaved it off! I can't! I have just a few left, have started to wear a chemo-cap, but the few hair poking out from under the chemo cap make it look a bit "normal". I have sewn my chemo cap myself, I think I will make some more in different colours.

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  • Hughope1
    Hughope1 Member Posts: 129
    edited August 2018

    Good morning everyone, Well power port went in yesterday. My neck is bruised and vary sore today. But hopefully will make it easier with my first round of Chemo today at 10;30. I will have you all in my thought and prayers. Thank you for all the support. I have been up most of the night, I guess I have a case of nerves or my lovely steroid is getting the best of me. I will log in later, going to try and go eat something. xoxoxo.

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  • Fixyourdog
    Fixyourdog Member Posts: 26
    edited August 2018

    Claritin is supposed to help with bone pain from Neulasta. I asked my MO about it since he hadn't mentioned it and he said it was ok to take it. Then at infusion #1, the nurse gave me a patient ed handout, where the Claritin info had been whited out. She said they were no longer recommending it and wouldn't bring it up unless the patient did. I think it's because it's use is not evidence based.

    Howver, I've taken it for both infusions and plan to take it for the next 2: no bone pain yet for me.

    And yes, I eat before during and after chemo. Small meals, with good result so far.

    I think at least half my hair fell out between 1st and 2nd chemo, then a little more after #2. It seems no more has fallen out since then. Interested to see what #3 on 8/10 will bring, as I am sporting a sparse buzz cut.

    Glad to see several of you are taking chemo in stride!

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