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Starting Chemo December 2019

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  • maryjv
    maryjv Member Posts: 269
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    going red-it’s my first chemo today as well! Feeling ok just finished the A now on the C and feel loopy from the Benadryl...

    Eigna-I met a lady in the waiting room she also had a hospitalization. Following first rounds..she thinks it was the neulasta! Hoping you are resting and recovering at This time🙏❤️
  • jrnj
    jrnj Member Posts: 407
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    havefaithtoday welcome. What are they giving you for nausea?

    Goingred welcome and I’m jealous of your weather and your state. I bring my cell phone holder that wraps around my neck and they make fun of me lol. But I don’t use it. I’m in a common chemo room and someone usually likes to talk.

  • Eigna
    Eigna Member Posts: 256
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    Hello ladies. I am doing well and full of energy. I still have a bit of a cold but nothing is holding me from doing everything I need to do around the house 😀 I even baked a sweet bread for New Years!

    Havingfaith - to answer your question when I was hospitalized a few days ago my neutrophils were the lowest at 0.3. The day they discharged me they were at 0.6 and they gave me the neupogen injection. Two days later I went back for a blood test and my neutrophils were at7.8. So they do go up. Don’t worry they will go up. If you don’t have fever it’s a good thing. It means you don’t have an infection. That is why they didn’t keep you in. Count your blessings. Keep strong 💪!

    Hey Maryjv - hope all goes well with your first cycle. Let us know how you are doing.

  • maryjv
    maryjv Member Posts: 269
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    Awesome to hear Eigna!!! Day one: came home feeling good but right after dinner became disoriented-horrible feeling...not sure if it was because I ate or because I took medications but either way just rested. Today I wait for the neulasta injection..feel ok slight headache but I think it’s because I didn’t eat very much yesterday ❤️
  • Eigna
    Eigna Member Posts: 256
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    Take it easy Maryjv - one day at a time. You can do it. 💪.

  • jrnj
    jrnj Member Posts: 407
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    maryjv. I felt very tired and disoriented with slight headache too yesterday. Just rested. Also why I’m posting so much lol. I’m just lying in bed. I ate normal. Each cycle I get more tired and for longer. Usually day 2 is ok Day 3 and 4 was more heartburn and slight nausea after iv meds wore off. Neulasta not bothering me too much I already had aches from statins. Taking senakot for constpation. Miralax not working. personally I could not take benydrl it would make me sick. But that's just me. Claritin Is questionable too For me. I'm taking a little on day 3 and 4. Taking zofran and pepsid regular. Compazine or Ativan if I have symptom that needs them

  • maryjv
    maryjv Member Posts: 269
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    Oh yes constipation, forgot to add that to the list-never a Struggle but def yesterday...started miralax. All these meds,no wonder we have all these side effects!! But the chemo is going to heal us and make us stronger warriors 🙏❤️
  • jrnj
    jrnj Member Posts: 407
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    Mary. yes agreed. Fyi. I went to San Antonio many years ago. It was an awesome place. I thought it was funny that the Alamo is across the street from the business district. Lol. I live near the jersey shore if you ever want to go to the beach.

    Eigna where are you that you get so much snow

  • maryjv
    maryjv Member Posts: 269
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    Thanks JRNJ! You guys are always welcome with me here in San Antonio! Nice place to getaway and not too much traffic!
  • Eigna
    Eigna Member Posts: 256
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    I’m from Canada: Quebec, Canada 🇨🇦!

  • jrnj
    jrnj Member Posts: 407
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    I was in Montreal when I was like 7. Sking at gray rocks at 14. Camped a lot in Kingston area in my 20s. Went to Vermont a lot to visit a boy in my 30s. Do you speak french?

  • Eigna
    Eigna Member Posts: 256
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    Yes i do speak French

  • Sunrisefish
    Sunrisefish Member Posts: 35
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    Hi ladies, thought I'd join the group. I've been diagnosed with breast cancer 3 times in 5 years. First time lumpectomy and radiation... Tamoxifen gave me severe dry eye... so I went off it. 2nd time double mastectomy. And now cancer came back in the lymph nodes... so 26 nodes removed and chemo starting Jan 3rd. Will be starting Tamoxifen again and possibly a second round of radiation. (My oncotype score is 3...which is why I didn't have chemo earlier.) So it's my first time in the chemo club... and its high time I kick this thing to the curb for good!! Looking forward to the support group here... we got this!

  • jrnj
    jrnj Member Posts: 407
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    Welcome Sunrisefish, good luck to you! Today was the worst day for me. Day 3 after treatment 3. I couldn't get out of bed due to extreme fatigue, heavy head and dizzy. But grateful no nausea. Now I'm wondering is it the chemo or the Neulasta? I'm getting Neulasta onpro every 2 weeks. Is that too much? My last WBC was 19.4 and normal high is 10.

  • maryjv
    maryjv Member Posts: 269
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    JRNJ-day 3 of 1st tx, feeling a little fatigue and heavy head/pain-def considering neulasta as the cause...mild bone pain in the torso area just hoping this passes
  • Eigna
    Eigna Member Posts: 256
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    Day 16 after first round of TC : starting to lose my hair unfortunately 🙁. The loss is real. I don't know how I feel at this point. I have an appointment on Sunday to shave it off but don't know if I will be ready for this experience.

  • maryjv
    maryjv Member Posts: 269
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    Any tips or suggestions for smells??? I am now very sensitive to smells especially sweet smells and tastes..

  • jrnj
    jrnj Member Posts: 407
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    Eigna, I'm sorry. I know it's hard. Being on CMF, they said thinning, not total loss. But after second of eight treatments I lost over 50%, so it did traumatize me. I bought a wig just in case, but hate it. Like the wig, just hate wearing a wig. I'm a ponytail type of gal. Can't seem to fit it right on my head. This week I decided not to brush it much or wash it, I don't know if it will help.

  • Ivana
    Ivana Member Posts: 16
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    Hi Eigna,

    Sorry to hear about your hair loss, that was very devastating for me the first time I had this. Please try to find a wig you like and maybe a hat or two to help. Anything that will help make you more comfortable.

    I’m trying out cold capping this time, but I’m still terrified of losing my hair. I’m meeting with a salon on Sat. to consult about a wig. I’m trying to stay positive, but it’s hard with all the side effects going on.

    I had my first chemo this Tue., but a bit different than most here since I’m Her 2 positive, taking Herceptin, Perjeta and Taxol. Having diarrhea cramps, but no actual diarrhea. Not sleeping well at all, going to try a bigger piece of cannabis chocolate to help me sleep tonight 😉. My scalp is a bit itchy, so I’m worried that even with cold capping I may lose my hair.

    Wishing you luck, your sister in chemo land!

  • jrnj
    jrnj Member Posts: 407
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    Good Luck Ivana. I find it surprising that I haven't seen anyone talk about prescription sleep aides except me on these forums. I've been taking Lunesta for years, before dx, and would really be suffering without it. It is extended release so it keeps you asleep, unlike Ativan and Valium. If you take Ambien, make sure it is extended release, but I like Lunesta better. A good nights sleep is the most important.

  • kat333
    kat333 Member Posts: 38
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    Hi everyone... wanted to check in and let you all know the sharing of experiences and support has been so helpful. Will have my second chemo on Tuesday.

    Maryjv I so hope you're feeling better. My slight but constant headache lasted for at least a week after treatment. It was getting so nerve racking but, finally, went away. The first thing I ate after treatment made me sick so, after, ate very light every 3 or 4 hours which kept it at bay. Are you taking Claritin? Sending good vibes that the bone pain is short lived and these side effects ease up or stop soon. Oh, and yes, very sensitive to smells. I filled a bottle with water and lavender oil to squirt in front of my face at the slightest indication of a reaction to any 'smell'. lol However that did quit when the headache finally stopped.

    Eigna I'm happy you're feeling better after the rough spell. Pretty sure we did 1st round right about the same time and my hair starting shedding three days ago. It is shocking in spite of knowing ahead of time. Am so sorry you're dealing with it too. I've kept combing it out often and last night cut to shoulder length. Going to continue with the combing and hope not to have it shaved but will see how it goes. My hair was long and thick and is three fourths gone within that short time.

    Ivana Sure hope the cold capping helps. Keep us updated. It is so traumatic. I bought a wig and hoping to be able to wear it as my scalp is very sore. Not sleeping well at all either. Have had life long problems sleeping but much more so now. Because side effects were not too bad they mentioned leaving steroids out of the infusion, next treatment, but having time to think decided I'm going to ask them not to make any changes. Would rather be up for a few days straight than risk having more/worse SE.

    JRNJ Hope you're feeling better and the side effects are easing. It's so true about a good nights sleep. Am planning to ask my PC, next appointment about prescribing Lunesta. Hoping you will just see the thinning and not total hair loss. Even with 75% loss, at this point, I would be thrilled if it would stop and could live with it as is.

    Welcome sunrisefish... Hope your first treatment goes well today!

  • Eigna
    Eigna Member Posts: 256
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    Hey Kat333 - my first infusion was dec 17 and my next one is on Tuesday so I guess we have the same timing! When are you planning to shave it ? Or are you trying to see how long you can keep it. Mine too is shoulder length. This morning I took off lots of hair.

  • halezma
    halezma Member Posts: 13
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    Hey guys! Sorry I haven't checked in in a while. I had my 2nd AC on the 23rd. This cycle was so much easier than the 1st but I felt more prepared. The 1st cycle I started having extreme nausea on day 4 and 5 so I started the Zofran/Compazine combo on day 3 and it worked like a charm. My sensitivity to smell wasn't as bad this time. I did vomit once because I had heartburn so that wasn't fun. I am having all kinds of problems sleeping. My MO said at my check on the 23rd to try Benadryl first and if that didn't work in the 3 weeks between treatments that he would give me a prescription. My husband has been laughing at me because I can't drink fruit punch or have cherry popsicles because it reminds me of adriamycin. I did got ahead and shave my head right before the 2nd treatment. I did get a good quality wig and a baseball cap with hair attached (which I wear more than the wig) but I did purchase a few head wraps and head turbans from Amazon and I love them. Wishing all of you a Happy New Year!

  • maryjv
    maryjv Member Posts: 269
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    Hello all, Still sensitive to smells and now my taste buds are gone! Lol was so excited to enjoy a slice of pizza last night smelled really good but no taste! Some nausea so just trying to take it easy right now...I also have thick hair so just waiting to see hair loss and then will buzz cutt...I also love a bun so will see what I can do once the hair loss starts...have a few more days at home before I return to work on Tuesday (dialysis)....keeping you all in my thoughts and prayers 🙏❤️
  • kat333
    kat333 Member Posts: 38
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    Hey Eigna... my 1st was 16th just a day before yours. Hoping to keep combing out (each time a lot of hair sheds) That, for me, seems less traumatic than having it shaved. The wigs the shop ordered, to match my natural color, were very close to it so I got two in different styles. Both short which is a dramatic change. The long one felt heavy, sort of awkward, so passed on it.

  • Sunrisefish
    Sunrisefish Member Posts: 35
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    Hi Ladies, just finished first treatment... all went well. Thank you for all of your comments... it helps to know what may be coming. I think I'm ready for the hair loss.. I bought about 20 turbans and scarves. Headcovers.com is a great site with all sorts of tips and advice. It was founded by a survivor who wanted better and beautiful options for hair loss! Personally I do think they are beautiful!! Remember the hair loss is temporary... it will come back. If we can't change it have fun with it... be a red head if you've always wanted! And remember we are all beautiful... just the way we are... and we are each becoming even more so through the strength of spirit it takes to go through this journey. When it gets really bad... take a deep breath, realize your true magnificence and remember it will pass. Love and light fellow warriors.

  • Eigna
    Eigna Member Posts: 256
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    Kat333- are you putting anything like a hair net to prevent hair from falling all over the place? I can’t do this anymore. I have hair on the floor, on my clothes. Hair all over the place. I think I’m going in for a shave tomorrow unless I chicken out.

  • kat333
    kat333 Member Posts: 38
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    Oh Eigna! Yes if that's the case would definitely take that route. I combed so often and it was coming out so quickly was little fall out in between combings.

  • maryjv
    maryjv Member Posts: 269
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    Eigna-we are here with you, do what feels right to you! I have not gotten a wig just some wraps the nice looking wigs are so expensive!




  • Ivana
    Ivana Member Posts: 16
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    Hi Sunrisefish, thanks for your words of encouragement. You’re right about the hair, it’s temporary, but when you are trying to work, it helps to have a wig to keep some sense of yourself. I suppose we all deal with this differently...we just need to do what feels right since so much of this is out of our control.

    I will check out the website for head covers you recommended, thanks.

    In the meantime, glad your first treatment went well, I hope your side effects are mild over the next few days. Mine are a bit of a roller coaster, but much better yesterday and today. I go back to work for a couple of days on Monday, then chemo on Wed. again.

    Stay well ladies!