Starting Chemo May 2018

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  • L8Blmr
    L8Blmr Member Posts: 133
    edited May 2018

    ClareCo, I'm fortunate there, my MO said no radiation due to clear lymph nodes.

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  • Djt
    Djt Member Posts: 264
    edited May 2018

    Mainola, I agree, that's me too. I keep wondering about how, why, and WTH?? my significant has often told me this whole thing is a mental fight, struggle. We must grasp it, and control our decisions and not let out emotional , run us! Yeah, easy to say, right? We are woman, we work out of our hearts! But our mind can crucify us if we let it. I think is extremely important to remember-

    We are still the same person.

    We did not do anything to make th is happen

    And this too, shall pass.

    It's okay to have bad days and do nothing, and say No to everyone.

    It's okay to have our moment, to weep, cry, yell, and hate this. It passes

    We are not defined as a person by our hair, lack of, or by our cancer.

    God bless, and hope for each day to be a good one.

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  • Ingerp
    Ingerp Member Posts: 2,624
    edited May 2018

    ccc—I believe whether or not you get a port is up to you, although your MO might have a preference. Many women have them. My MO wants me to try it without one, and I am absolutely fine with that.

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  • ClareCo
    ClareCo Member Posts: 66
    edited May 2018

    ccm2 sorry you are here but glad to meet you. My oncotype score was 19 so I ended up getting three opinions at three different hospitals. It turned out the doc I liked best is at a hospital where everyone gets a port. I asked if that were negotiable and she said no. Had I gone with either of the other two they both said they would not do a port unless the nurses had trouble with my veins. They felt it was not necessary since I’m only doing 4 cycles. I was really bummed about getting a port but today, at my first infusion I was able to see and hear about some of the advantages of having one. Having the tube run into your chest rather than your arm feels sturdier and allows free movement of arms for turning pages and switching tv channels. So I’m slowly warming up to the idea. I suggest you call and ask the MO whether she/her hospital does ports on everyone or only on people with difficult veins. Ask also when and how they make the decision so you’ll know what to expect and plan on. Good luck! Let us know how it turns out or if you have any more questions we might be able to help with.
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  • cccmc2
    cccmc2 Member Posts: 131
    edited May 2018

    thank you for responding!! Still petrified, but taking it day by day. I appreciate all of you! XO

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  • MellieTX
    MellieTX Member Posts: 17
    edited May 2018

    good luck to all you great ladies ❤️

    Went to the wig shop yesterday a got 2 that I really like. My doctor recommended cold capping, but I also have MS and cold weather triggers my attacks, so I’m going to pass on that. I haven’t had a treatment since Januaryand haven’t had any issues, so I’m not going to wake that sleeping dragon. I cleaned my bathroom counter (why so much old makeup?!?! Lol) and set up the stands so I’ll see them and get used to them for a few weeks.

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  • MellieTX
    MellieTX Member Posts: 17
    edited May 2018

    cccmc2- I think port placdepends on your infusion center- some seem to do it as a matter of course, and sometimes the chemo dictates if a port is necessary. I’m passing because I’ve already been doing monthly infusions for about 10 years for my MS and have not really had any problems. The nurses occasionally ask if I want one, due to scar tissue in my veins, but it’s not really been a problem. People who have the ports seem to really be happy with them.

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  • Ingerp
    Ingerp Member Posts: 2,624
    edited May 2018

    That’s funny wellhere—I did a *deep* clean/throwaway in my bathroom recently. Threw away a garbage bag of stuff, gave another large bag of stuff to my sister, found things I hadn’t seen in years. It felt great! I think it’s a little bit of nesting. I was going to buy myself a new set of sheets as a chemo treat but decided I’d rather just snuggle into the ones I’m used to. I’ll save the new bedding for when I’m done. ;-)

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  • VL22
    VL22 Member Posts: 851
    edited May 2018

    Hi ladies - I finished my 20 weeks of chemo 12/21/17 - ACT. The truth is it went so fast - it’s so hard to believe I’m on the other side of it. What is so disheartening is that every month a new thread has to be started because this disease doesn’t stop.

    I just want to share that it is indeed a roller coaster. One day you feel in control, the next you’re having a snap out and the next youre a crying mess. Don’t “behave” for anyone - do you. Unless you live this, you have no idea.

    Some tips - as everyone says - drink water! Lots of water! Even if you don’t feel like it, get some exercise. Call your Dr immediately with SE’s! Don’t feel like your being a bother or overreacting. The sooner the side effects are addressed the better chance they can be minimized. Accept help. Get rest.

    My biggest piece of advice is the hardest - don’t let the fear take over your life. Don’t “what if” all the time. As you go through this process, you’re still living. Find joy in it. Do some special things if you can. We took so many weekend camping trips through my diagnosis and treatment with our teen boys - time together we will cherish and never forget. It is so difficult to stay out of that dark place, but really try and you’ll still have happiness through this crap time.

    Good luck!!


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  • Ingerp
    Ingerp Member Posts: 2,624
    edited May 2018

    I love when you old-timers check in, VL. Really really really appreciate it. Someday I will pay it forward. :-)

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  • kdrake1007
    kdrake1007 Member Posts: 77
    edited May 2018

    Hi everyone! <raising hand> I'm joining the May Chemo party too. I'll start May 24. Had my port placement along with an ALND last Thursday, so they're waiting 4 weeks for healing before starting chemo.

    I have a boatload of support from family and friends and I feel so blessed! Still scared, but I'm gearing up for warrior mode to blaze through the summer and fall of 2018.

    Thanks especially to the veterans for checking in with inspiration and tips!

    Kim

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  • Ultra1949
    Ultra1949 Member Posts: 14
    edited May 2018

    Hey all! Thanks for words of encouragement- ClareCo and CoComedy and everyone else. Hope all is well with you. I finished my first round today at 1:00 and it was uneventful which was a nice surprise. Used the mitts for my hands and bags of ice for my feet. My feet seem fine, but I do notice that the ends of my fingers appear to be unusually dry. Will probably bag them with moisturizer tonight in bed. About 2 hours after I left the hospital, I noticed a sort of scratchy, sore feeling in my throat. I used a Therabreath mouthwash but it burned my mouth although the bottle says it will not burn. So. We'll see. I'm drinking water like crazy. Gotta flush that stuff out! Did my Claritin while getting chemo, and will take a Zofran soon. Healing chicken soup with a bit of ginger for dinner. 🙏 and 💪 to all.

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  • Engine104
    Engine104 Member Posts: 301
    edited May 2018

    I just noticed I posted tis in the April, 2018 group and we are really May, 2018. Sorry for any confusion...

    Hi everyone,

    My wife's TC protocol starts tomorrow. She seems ok with it, but I'm anxious, not so much with the infusion, but with the side effects that will be coming.

    We went to a chemo class today and, even though we've been through this before (My wife had AML 16 years ago), we learned a lot of new stuff.

    Anyway, this webpage and everyone here has been so helpful.

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  • buttercup1
    buttercup1 Member Posts: 24
    edited May 2018

    Hi everyone! I just had my port placed on Monday April 30th, and just had my first chemo treatment yesterday May 3rd. I'm HER2+, so I'm doing things a little backwards (chemo and HER2 drugs first, surgery second, then more HER2 drugs). My session was about 8 hours long, which I think is longer because I'm getting 8 drugs (4 for cancer, 4 to stave off nausea and hives), but I think most people will have much shorter days! The only problem I had was red face flushing with a hot feeling, dry mouth, and dry eyes. No nausea though. The PA, doctor, and nurses immediately gave me 3 extra meds as a "just in case" when they saw the redness and heat, but it started to subside, and they let me go home.

    The morning after: I feel completely normal (so far).

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  • buttercup1
    buttercup1 Member Posts: 24
    edited May 2018

    Ultra1949,

    My doc told me to watch out for itchy sore throat, and to make sure your throat doesn't feel swollen, and you have no tightness in lungs or chest. They gave me benedryl to combat possible sore throat, they might recommend the same to you. Also, Biotene dry mouth wash was a godsend to me last night, no burn, just nice moisturized mouth. Oddly I think it helped my eyes feel less dry in a way, but it might be in my mind. Good luck hon!

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  • Ingerp
    Ingerp Member Posts: 2,624
    edited May 2018

    Thanks for sharing, buttercup. Fingers crossed you continue to feel pretty normal!!

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  • Engine104
    Engine104 Member Posts: 301
    edited May 2018

    The first TC infusion went well. No issues. Waiting for side effects. We are as prepared as we can be, but it is scary. The doctor has given us all the meds we need and I purchased what OTC meds they suggested.

    They will do a PIC line soon. My wife's veins aren't very good from when she had leukemia 16 years ago.

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  • SAW66
    SAW66 Member Posts: 22
    edited May 2018

    Hi Everyone,

    I figured it was time to join. I've been coming to this site since I have been diagnosed and I can't tell you how much it has help me! I had my first chemo yesterday 5/3/18 and it went much smoother than I thought. It was a long day, which they said the 1st day usually is. My husband and I were there for 6 hours. I got that metal taste in my mouth, so I sucked on hard candy and water seem to intensive it, so I switched to soda. Afterwards, I had some nausea, tingley feelings on arms,feet, and hands, hyper due to the steroids (didn't sleep well). I drank tons of water and tried to lay down when I first got home and had to sit back up. Not dizzy, just the feeling when you had the 3rd drink when you said you were going for just 2! Lol. I just need to sit up for awhile. Which was good cause I was going to the bathroom a lot. I added Gatorade with my water (again still had that taste of metal when I just drank water),I am thinking I might switch to pedialyte.

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  • PatsyKB
    PatsyKB Member Posts: 272
    edited May 2018

    Hi all. I don’t know what my treatment plan is yet...lumpectomy and sentinel node biopsy on May 7 but joining here just in case

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  • Ingerp
    Ingerp Member Posts: 2,624
    edited May 2018

    Patsy welcome--this will be a good place to read about what might be coming up. That said, whatever tx you get will likely not start until June. You need to heal before doing anything. I love that sweet 4-6 week downtime after surgery when you really cannot do anything but let your body recover. Kind of the calm before the storm.

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  • Moderators
    Moderators Member Posts: 25,912
    edited May 2018

    Dear SAW66,

    Welcome to the BCO community. We are glad that you have been helped so far by the shared experiences of others and we appreciate that you posted to tell your own story. We hope that you will stay active here and keep everyone posted on your treatment. We look forward to seeing you around. The Mods

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  • cccmc2
    cccmc2 Member Posts: 131
    edited May 2018

    I’m feeling really down but more than anything extremely anxious anytime I have to leave my house which then makes me short of breath, which then sends me into what if they missed something. My mind is everywhere. Theoretically I am cancer free as my mastectomy surgery showed clear margins and no lymph node involvement. I start chemo on 5/17. I just feel so down, and I should probably feel gratful. Every task is huge to me. I just want to feel positive while I move forward. I know everyone reacts differently. I just hate how I feel. Always worried and anxious. Thanks for letting me vent .

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  • SAW66
    SAW66 Member Posts: 22
    edited May 2018

    cccmc2- I completely understand! I just went through the same thing. Was constantly having breakdowns through out the day, then feeling guilty for having them! I should be so thankful, like you my margins and nodes were clear. I know for me it was the anxiety of chemo. My emotions were the same when I had my mastectomy. Going for walks and trying to keep busy helped

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  • Pompa
    Pompa Member Posts: 2
    edited May 2018

    Hi friends

    I started my Chemotherapy in April,had 4 chemos already, need 12 of them.. always think positive .I met so many ladies who had breast cancer, everyone had positive outcome,so Good luck dear friends...this journey bis tough. But it makes us stronger

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  • Ultra1949
    Ultra1949 Member Posts: 14
    edited May 2018

    buttercup1! Thanks for the words of encouragement. I did have that weird, scratchy throat effect first evening but it eased off pretty well. Pulled the Neulastin off yesterday, still feeling basically fine. However it is 2:45 am here in Omaha and my leg bones are yelling!! I think I probably overdid the gardening thing as I was feeling crazily energetic from the oral steroids. May have to graduate from Tylenol to ibuprofen. Biotene worked great for me as well. Hope all is as well as can be with you!

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  • Moderators
    Moderators Member Posts: 25,912
    edited May 2018

    Pompa, welcome to our community. You're a third of the way there! Hang in there, and glad you found us here.

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  • buttercup1
    buttercup1 Member Posts: 24
    edited May 2018

    Ultra1949,

    I had the bone pain too! Hips and thighs were killing me. I took Claritin and it helped with the pain alot. By the way, is anyone else experiencing red hot face and chest flushing? My docs know about it, and give me pepsid and benedryl for it, but wasn't sure if it's from the steroid or the actual chemo. Other than that, just feeling ditsy (chemo brain already? It's only 3 days after my first round).

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  • SAW66
    SAW66 Member Posts: 22
    edited May 2018

    buttercup1-

    My face was flushed, like a sunburn the next day after chemo and then went away by the 2nd day.

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  • DodgersGirl
    DodgersGirl Member Posts: 2,382
    edited May 2018

    I was doing chemo this time last year, April thru Aug. what I wasn’t expecting was how cold my head would be in the summer from air conditioning on a bald head. I bought a really soft stocking cap like beanie on Amazon that I wore during the day to keep warm.

    I wish you all well.

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  • Ultra1949
    Ultra1949 Member Posts: 14
    edited May 2018

    buttercup1:

    The sunburn thing 😎is from the steroids. 🔥. I forced myself to walk a bunch today. I keep thinking if I continue to guzzle the water and walk I can push it through my body faster. Probably not but it feels like a positive move. It’s Day 4 of round 1. Onward. Hope all is well with everyone on this thread

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