January 2016 Chemo!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2016

    Hi ladies,

    I'm heading in for a "chemo teach" appointment with a nurse in about an hour here, and my first infusion is scheduled for Thursday 1/28. I was able to successfully distract myself for the last 4 or 5 days with a super busy schedule with an abundance of birthday festivities, but now the scary stuff is here in my face and it's so hard to stay calm and focused. :( I just read through pages and pages of your posts though and it's helping a lot. I love the wigs and the encouragements and the practical advice about SEs. I just do NOT love the idea of having to go through these treatments. I know it's only temporary and that it could be a whole lot worse than "only" 4 rounds of TC, but right now when I don't even know how I'll react to everything is the hardest time. I'll have to report back after infusion #1. And keep deep breathing.

    Anyway hang in there all you awesome ladies. We do got this. :)

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  • keepsake
    keepsake Member Posts: 59
    edited February 2016

    MissBee - congratulations on the new home! Sorry you're feeling so bad after Round 2.

    Mena - Hope you find an MD soon to be available for you and to help you manage all those nasty side effects.

    LovesToFly- Your new wig looks fantastic!

    Hang in there everyone dealing with hair loss and all the other horrible side effects. You will get through this!

    Some new guy came by unexpectedly at work this morning and extended his hand for me to shake. Unfortunately, could not do because I was grasping a wet Clorox wipe concealed in my right hand after wiping down potentially germy surfaces at my desk. We both had a laugh. Bad timing LOL.

    Cycle 2 starts Thursday for me.

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  • LovesToFly
    LovesToFly Member Posts: 1,133
    edited January 2016

    good luck songbird. I'm hooked up now m

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  • LovesToFly
    LovesToFly Member Posts: 1,133
    edited January 2016

    quixhobbit I too was so scared. I'm not gonna lie it sux...but it's truly not as bad as I'd anticipated. You've got this!!!

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  • LoveMyVizsla
    LoveMyVizsla Member Posts: 813
    edited January 2016

    I've been waking up with headaches. I don't usually get headaches. Also, the skin on the corners of my nose is dry. What is up with that?

    Mena, you need help. I can't believe no one is listening to you. Keep us posted.

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  • Mena4911
    Mena4911 Member Posts: 49
    edited January 2016

    I have an appointment with my PCP this afternoon. I called first thing this morning. No doubt in my mind he will actually LOOK in my mouth and get this fixed up in no time. Still no sleep! I wish I had spoke up and refused the steroids, but just felt too yucky and defeated. Note to self ; Speak up next time! Hope everyone is feeling better this day!

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  • Mena4911
    Mena4911 Member Posts: 49
    edited January 2016

    O my hair is so much thinner! My sister who went thru all this before says just cut it and get it over with. But, i am just not ready yet. I probably will next week. For now gentle brushing and lots of petting!

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  • zinny
    zinny Member Posts: 281
    edited January 2016

    Mena and MissBee, sorry you are feeling so awful and hope that it turns around soon.

    Well, I guess I pushed too hard after the last bout - going away to the ski hill seemed doable, and i felt well enough to get some runs in, but then packing up etc must have been too much. I walked yesterday morning and then was exhausted and feeling under the weather ever since. Last time, day 7 I felt normal, but today I went back to bed at 10am! Gut is unhappy, guess I haven't pushed the yogurt like last time either...

    Taking it easy today. Bingewatching "Catastrophe." OMG funny (if you don't mind the adult content - like Californication.)

    Hot flashes still coming crazy strong - keep waking up with my PJ's thrown all over the floor:)

    Hugs all -

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  • Cathytoo
    Cathytoo Member Posts: 667
    edited January 2016

    Side effects have arrived- really bad back pain...nothing seems to bring relief. Even lying down is painful, actually more painful. It's been days since the Neulasta shot and I did take Clariton. Anyone had this experience? Also diarrhea began today. 😱

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  • LovesToFly
    LovesToFly Member Posts: 1,133
    edited January 2016

    zinny and mena hope you both feel better soon. Mena it sounds like you had an awful experience, I'm so sorry.

    Cathy are you still taking Claritin? I took it for 10 days. A few times I had mild aches, nothing that Tylenol or Advil couldn't handle. Don't be afraid to take Immodium!

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  • Cathytoo
    Cathytoo Member Posts: 667
    edited January 2016

    LovesToFly...I stopped the Clariton. Maybe I'll start it again. The pain is very different than any pain I've had before. Almost pounding. Very strange. I have a bad back and this seems very very different

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  • LovesToFly
    LovesToFly Member Posts: 1,133
    edited January 2016

    Cathy I didn't have much pain, but from what I read about people that did, it was quite horrible and yes unlike other body aches.

    I also read from a few sources that Neulasta is actually time released, for 10 days. The pharmacist recommended I take the Claritin for seven days, but after reading that I decided to take it the three extra days, I figured it couldn't hurt but might help. I've never gone without, so I don't really know if that helps, but I assume it did and don't intend to try otherwise! Giving myself the shot tomorrow, a bit nervous about that

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  • Sheri64
    Sheri64 Member Posts: 113
    edited January 2016

    Well had my first TC treatment today. It when good. I think all the worrying before was for nothing. I keep thinking about the post on here " I don't have to be brave but just show up". It help me getting in the door. Hope for SE to be low but we will see what the next few days bring. Hoping to go to work the next 2 weeks between treatments. God bless to all

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  • Cathytoo
    Cathytoo Member Posts: 667
    edited January 2016

    LovesToFly...I'm sure this pain is from the Neulasta. And, it is horrible. I just took a Clariton and hope it works. Obviously, I stopped too soon. It's just all enveloping pounding pain. Guess my white blood cells are hopping

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  • LovesToFly
    LovesToFly Member Posts: 1,133
    edited January 2016

    Good luck Sheri! I am on three weeks cycles, I take off my chemo weeks, and then work two weeks. I don't know he had one cycle but it was OK. Be gentle with yourself the next few days, and don't be afraid to take medication for any se (hopefully you won't need them!)

    Cathy I hope the Claritin helps! They me if I did get bone pain from the Neulasta, Aleve (naproxen) woul probably be the most effective over-the-counter.

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  • Frill
    Frill Member Posts: 311
    edited January 2016

    Hi, all. Here's Frill's Latest Ridiculous Adventure. For those of you who don't know me - see the November 2015 surgery threat. BWHAHAHA!

    I can't post too much because I'm TOO BUSY SCRATCHING THE RASH COVERING 90% OF ME!

    That's right - my ONLY side effect after Taxol was that two days later I woke up covered in hives. Bonus? No chemo this week. Is that *really* a bonus? What are they cooking up for me?

    More later, just wanted to take a break from brief writing, because HIVES sure aren't a reason not to come in to work.....

    Love,

    The Borg Queen

    (I have a port and my own hive)

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  • Paulinek
    Paulinek Member Posts: 117
    edited January 2016

    I love that you girls have such a great sense of humor! Sometimes I wish there was a "like" button for your posts :

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  • LovesToFly
    LovesToFly Member Posts: 1,133
    edited January 2016

    paulinek I think that all the time!!!

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  • Veronica31
    Veronica31 Member Posts: 97
    edited January 2016

    Frill that sounds awful!! What are they going to do to help you next time? Will you get Benadryl?


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  • MissBee123
    MissBee123 Member Posts: 186
    edited January 2016

    PaulineK: I have simply shampooed my head as normal with Head and Shoulders to avoid a dry flaky scalp. For me, that has worked well and my skin was never bothered or sensitive.

    jensgotthis, great tips for flying! I'll be wiping everything down, good idea.

    Shiningstars I'm glad that chemo has been fairly kind so far. You might consider a stool softener, not a laxative, which can help scoot things along without causing diarrhea.

    Mena, I will look into phenergan gel, I haven't heard of it. I'm so sorry you had such an awful experience. I really hope your PCP takes care of things for you. The squeaky wheel gets the grease so go ahead and make a fuss!

    Honesty2021 and LIfeAloft, glad things are going well for you so far!

    Myra, definitely get it checked out! The fewer delays you have the better.

    Songbird I hope today went well and will be hoping for a SE free round for you!

    LoveMyVisla, I've gotten a nasty headache at the end of both of my infusion days. Extra water does help, but I had to pop some Tylenol to help it. Dry skin is normal as the chemo is killing your oil production.

    Zinny, for me, ever single round has been different. I was told it could be somewhat predictable, but many of my side effects were varied. I say that because perhaps your skiing made you tired, but not necessarily. You might have wound up exhausted anyway. Working out is still one of the best things you can do, so in my humble opinion don't give it a second thought. Happy resting!

    Sheri64, I'm so glad today was not as awful as you feared. I think for all of us the wait for news and procedures are the worst part. Once they actually happen half the time they aren't as bad as we thought.

    Oh Frill! So sorry for the hives. Maybe you can play connect the dots, make a constellation or two :D

    I'm much better today than I was last night. Nausea is gone and I felt pretty much normal today. Headed to bed early, though, as I only slept about 4 hours last night. Thank you for all the good wishes!




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  • MissBee123
    MissBee123 Member Posts: 186
    edited January 2016

    By the way, anyone else have a fitbit that wants to be fitbit friends? I've found it to be pretty motivating to get up and move with those Workweek Hustle challenges! Send me a PM and I'll share my email so we can find each other.

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  • KimmieM
    KimmieM Member Posts: 9
    edited January 2016

    Round #2 is Thursday. I have started losing my hair big time. Its weird to see how small my head is without hair. My question ladies is how have you or how do plan to take care of your bald head?

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  • Sally22
    Sally22 Member Posts: 16
    edited January 2016

    Hello MissBee123,

    Was hoping with a dx of R Breast Cancer on 12/4/15, lumpectomy on 12/15/15, and now chemo started 1/14/16 you got this forum up and running. 😎

    Feel free to add Sally22 to the AC+T 1/14/16

    Sally 😎

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  • Cathytoo
    Cathytoo Member Posts: 667
    edited January 2016

    LovesToFly...One Clariton and one Aleve took away the Neulasta pain within two hours. I can't believe that the pain left so quickly. Lesson learned. Next infusion I'll use it for the full days. Thanks for the advice. Hope you're doing well

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  • LovesToFly
    LovesToFly Member Posts: 1,133
    edited January 2016

    so glad!!

    I'm doing OK, but going to bed soon! Damn sleepy!

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  • Rockstarteach
    Rockstarteach Member Posts: 20
    edited January 2016

    Mena I am sooo sorry to hear about your struggles! I hope you find relief soon!

    I had a not so good day myself. I went to get my second round today only to have trouble with my port. Two nurses tried and couldn't draw blood. They sent me over to the hospital to have them put contrast in to see what was causing the problem. Long story short...my port was torn and a long piece of the catheter was floating by my heart. The went in and fished it out ( took over an hour to get). Then took out the old port and put in a new one! All while I was awake! Didn't like that at all! I am glad to say that I can go in for my second round tomorrow so I can keep on track!!

    I'm proud of everyone on this sight for being so supportive! I always wanted to be a pink lady when I was little but that was in the movie Grease! But we are pretty bad a-- ourselves

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  • LoveMyVizsla
    LoveMyVizsla Member Posts: 813
    edited January 2016

    My nurse said to use Tylenol for pains. "Tylenol is best choice for aches and pains when on chemo. The NSAIDs (alive, Advil etc) can interfere with you platelets working so we don't advise using them."

    Rockstar, I do not envy you getting a new port, but I didn't mind being awake for the procedure.

    Is no one else taking neupogen? I took Claritan for the first several days with it, but then stopped. No pain. Makes me wonder if it is working. I guess we shall see on Thursday.

    Lovetofly, do you have to inject in a certain place?

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  • sarah_sunflower
    sarah_sunflower Member Posts: 47
    edited January 2016

    Hi all,

    i woke up and found hair on my pillow. Freaked out for a minute and thought of all you brave and strong ladies and it actually gave me strength.. thank you ladies! I woke up with a bad headache as well , will wait out a few days to see how much shedding I can take before shaving it all off.

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  • DFWFLYGIRL
    DFWFLYGIRL Member Posts: 146
    edited January 2016

    LovesToFly...you look great!

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  • LovesToFly
    LovesToFly Member Posts: 1,133
    edited January 2016

    my head is shedding so bad that now, if I'm feeling up to it I'm going to go get my head shaved today. It is a bit tingly and painful, but not horrible. I'd forgotten about the birthmark that is covered by my side burns, I guess if I do decide to go bald I will have to get some good makeup to cover it!

    image

    LMV, I was told by the chemo nurse and pharmacist that Tylenol is the painkiller of choice, however NSAIDs are OK if used occasionally when Tylenol doesn't cut it, specifically for the Neulasta pain. When I was researching Neulasta, it seems a lot of people took 1 Aleve daily with the Claritin. I wouldn't do that I don't think. I wasn't worried about taking it once, I only had pain badly enough to need it once....actually it probably wouldn't even have been that bad but it was 2 AM! But certainly someone should check with their oncologist Chemo Clinic or pharmacist if they haven't been given the OK for occasional NSAIDs

    Yes I will be doing the Neulasta injection myself, they did teach me how to do it and sent me home with a video. I have to do it in my upper thigh or stomach. If someone does it for me they can also do it in my butt or upper arm.

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