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Starting Chemo February 2021

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  • ab45
    ab45 Member Posts: 153
    edited March 2021
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    LW422

    Good Luck tomorrow!! Keep us posted

  • lw422
    lw422 Member Posts: 1,399
    edited March 2021
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    Thanks, AB! I hope you are feeling OK. Are your mouth sores gone now?

  • Jvfireball
    Jvfireball Member Posts: 56
    edited March 2021
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    Navy Girl...glad your port was ok, there is so many things that we just don't know so everything is a learning curve. When it's over we'll all be experts.

    LW422 - heard the Johnson and Johnson has a significantly lower efficiency rate, but the single dose is very appealing.

    JN5000 - Going this afternoon to get my first Phizer shot. I will be glad to have it done and one more level of protection against getting sick which would only really be a problem because it would likely delay stuff that has no business being delayed.

    CAWR, AB45 and all, SO....we are here now.....Hair started falling out last night 😢😢😢, so called my girl....she's gonna come by the house and shave it tomorrow night. I'm glad I waited and know for sure that it's happening before I jumped the gun, but it's time. Thank you all for the support about it.....it still blows my mind how much more the hair bothered me than I expected.

    Aviva5675, good to have you in the group. hang in there and glad things are going relatively well so far.

    Hoping everyone is having a great well...!!!

    Cheers..Julie

  • lw422
    lw422 Member Posts: 1,399
    edited March 2021
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    Julie--sorry about the hair; it really is a traumatic event. I'm glad I went with "pixie" versus shaved head; I just couldn't do the bald until I absolutely have to.

    I saw my MO today and he told me not to get the vaccine at this point; they are going to be doing imaging to see what effect chemo is having, and apparently the vaccines can cause imaging issues. So that was all I needed to hear.

  • Jvfireball
    Jvfireball Member Posts: 56
    edited March 2021
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    LW422, Thanks for your support. It definitely sucks. Coming out in clumps...a couple right in front...so i don't think a short hair cut will be doable....so off it comes tonight. Honestly every time it comes out and now in clumps I cry, so I think it will actually be better once it's just done for me. I will have a good cry...my hair dresser is one of my best friends on this whole planet, so she is coming to my house and not her salon. We will have a good cry together and then pick myself up and carry on.

    I got my vaccine yesterday, 1st shot, and so far no side effects. second one is in three weeks, but I am not in the same boat as you, no imaging for me until everything is all done in July. I trust our docs....so if they told you to wait...glad they know what they are doing.

    How are you feeling after this weeks chemo?

    Thanks again LW!!

    Julie

  • JN5000
    JN5000 Member Posts: 72
    edited March 2021
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    Glad you have such a supportive friend as your hairdresser, Julie.

    I started lightly shedding yesterday, at the same time my eyes, nose and throat totally dried out. Yowza!! Keeping eyedrops on hand and bought another A&D to coat every part of me possible. Coating feet in Aquaphor before bed and wearing socks. Going to really hydrate today and drink cranberry juice to get ready for chemo tomorrow. I had trouble post-Chemo last time with possible urine retention which was weird. Going to try to be proactive as much as possible. I've been battling mouth sores for many days -- the only thing that works is a salt/baking soda rinse. I swish it every time I go to the bathroom (which is frequently!!) and, while I get new sores, none of the sores become horribly ulcerated, so I think I'm keeping them in check. Magic Mouthwash didn't help after all -- it toally numbed my mouth, but it made my teeth very sensitive. They're still recovering. I don't want an enamel problem after all of this other stuff, so I tossed the mouthwash.

    Got Covid shot #1 today, Moderna not Pfizer like I thought. They told me the second shot must be April 8, which is the day after my final AC chemo. I'll see if the MO wants to move things around a little bit to accomodate that -- or maybe not. We'll see.

    How's everyone doing? I hope okay.

    Jennie

  • aviva5675
    aviva5675 Member Posts: 836
    edited March 2021
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    Have been lucky with Claritin since 2 days before Neulasta onpro went off- no bone pain, its 5 days now. How long did you guys take the Claritin each cycle?

  • JN5000
    JN5000 Member Posts: 72
    edited March 2021
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    Hi Aviva 5675. I took Claritin the day before the injection, then for 5 days. On day 9 of that AC chemo cycle, I had bone pain. It really surprised me. It was very sharp pain in my pelvis. I took claritin again and Tylenol. It didn't do a lot for the pain. I had to be very careful getting off the couch and walking. I kept me down nearly 2 days. The pain began after I went on a walk -- it started as a strong pulsing sensation then became sharp when I stepped or turned. This coming cycle, I will continue the claritin after the 5 day mark to try to avoid the pain if it's going to happen again. I hope this helps. Jennie

  • ab45
    ab45 Member Posts: 153
    edited March 2021
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    Hi All

    2nd chemo was March 3, 2020, rough but the side effects happened later, mouth ulcers cleared but came back again after 2nd chemo, exhausted, naseau, joint pain, and heartburn. I only have 2 Ac left then on to Taxol, for those starting Ac, my suggestions, something for constipation, claritin, ginger for naseau, Tylenol, and baking soda for rinses, I also am noticing dry skin and dryness everywhere, eye drops, moisturizers...hope this is helpful..I will keep ypu updated but I can't wait until Ac is done!! Hang in there all

  • lw422
    lw422 Member Posts: 1,399
    edited March 2021
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    Julie--how'd it go with the hair? Hugs to you; this is all just temporary! My "pixie" is looking pretty sad with big patches of scalp. Glad the vaccine didn't cause any problem for you.

    I feel pretty good considering; much better than I ever expected to. I'm so thankful that Taxol hasn't been horrible for me. (At least not yet!)

    JN5000--so sorry about the mouth sores and I hope you see some improvement with those soon. I wasn't aware that the magic mouthwash would harm tooth enamel...yikes. I've had a bit of dry eye but it's managable.

    Aviva--I haven't had Neulasta (yet) so I don't know about the Claritin. From what I've read, some people just take it the entire time. So sorry you're having pain.

    AB45--you are really having a tough time; so sorry. I have 8 more Taxol and then AC and I am DREADING that so much. My MO said some people just "cruise right through it" but I doubt I'll be one of them. Just think, you are halfway done with that awful stuff so hang on.

  • JN5000
    JN5000 Member Posts: 72
    edited March 2021
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    Hi all. I got the Moderna shot yesterday -- no side effects other than a very slightly sore arm. I have a cousin who getting the same treatment I'm getting and her doc said no vaccine until May. I wonder -- does anyone have any insight into that? Jennie

  • lw422
    lw422 Member Posts: 1,399
    edited March 2021
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    Jennie--my MO told me to wait on the vaccine because it has been shown that it can cause swollen lymph nodes. Since I have scans coming up to check the effect of chemo on my cancer, he did not want the scans to be compromised or to give false positive results. That may be the case for your cousin.

  • Jvfireball
    Jvfireball Member Posts: 56
    edited March 2021
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    LW422 and Jennie, Hair went really well. We all bawled through it but it was at my house and I was covered in love and support. Truly yesterday waking up with clumps and sore scalp and patches was a lot harder than waking up bald this morning. Another hurdle in the rear view mirror.

    I never heard of Magicmouth wash, I was given Biotene dry mouth oral rinse from a fellow survivor and it worked great to keep any sores from happening. Not sure if that will help any, but it's an option.

    Really sorry to hear Jennie, Aviva and AB45 for the pretty hard SE. Praying you all can some relief soon. A good time to remember this is a journey and not forever, although it feels like pretty forever

    Mad respect for everyone of you....

    Julie


  • marie914
    marie914 Member Posts: 152
    edited March 2021
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    My MO wanted me to wait until I had recovered from chemo. She said it might make the vaccine not as effective. I don't think anyone knows for sure since testing hasn't been done on our groups.

  • moderators
    moderators Posts: 7,911
    edited March 2021
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    Hey All, Just letting you know that we had a very nice first gathering, and we're making it a recurring meeting in case you would like to join.

    Going through Chemotherapy?

    Come be with others just starting or in the process of chemotherapy in a relaxing, confidential and supportive virtual environment. This will be a recurring meeting.

    To Register, download the Zoom app and click the link below.

    When: Tuesday, Mar , 2021 01:00 PM Eastern Time (US and Canada)

    Register in advance for this meeting (if you register once you will not need to register for future meetings):

    us02web.zoom.us/meeting/regist.....

    After registering, you will receive a confirmation email containing information about joining the meeting.

    See you then!

  • lw422
    lw422 Member Posts: 1,399
    edited March 2021
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    Julie--glad the hair thing wasn't too traumatic. I agree that watching it fall out is difficult so might as well get it done!

    The magic mouthwash is available by prescription; I don't have any but when I went for my dental checkup my dentist told me to call him if I get sores in my mouth. He (or my MO) can order it for me. I'm hoping I won't need it!!

  • CAWR
    CAWR Member Posts: 13
    edited March 2021
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    I've been trying a few types of head wraps, and I can't find one I really like yet. A bamboo one from headcovers.com is the most comfortable, but not very stylish. Each type has their pros and cons. Has anyone forayed into the head wrap offerings yet?

  • aviva5675
    aviva5675 Member Posts: 836
    edited March 2021
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    Today is 1 week since the Neulasta and Im thinking of not taking the Claritin. But Im pretty nervous about stopping, and probably will chicken out and take it.

    Otherwise, I feel really good considering. Almost myself by today. One day at a time tho, no no idea if suddenly stuff will come up.


    I got a few beanies from headcovers.com, they feel soft and comfortable, maybe a little smaller than I expected. Got 1 from Etsy and it is pretty but gave me static when I tried it on.


  • lw422
    lw422 Member Posts: 1,399
    edited March 2021
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    CAWR--I have bought a few soft caps and scarves from Amazon, including some cotton "do-rags" so I can have that biker chick vibe. :cool: The nicest ones I've found are from an Etsy store (a breast cancer survivor)... https://www.etsy.com/shop/WithLoveLana?ref=cart_sh...

    There are lots of Etsy offerings but that's the only one I have bought from. I also bought a couple of inexpensive wigs from QVC and they will work in a pinch. Around the house I'll probably just wear a cotton knit beanie most of the time.

  • lw422
    lw422 Member Posts: 1,399
    edited March 2021
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    Aviva--I hear ya on the Claritin; I'd be nervous about stopping it, too. I'm thinking it doesn't hurt anything to take it, so why take a chance on getting pain? I haven't had Neulasta yet, but when I do I will be popping the Claritin!! I'm glad you are feeling OK.

  • CAWR
    CAWR Member Posts: 13
    edited March 2021
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    Aviva - I get brutal pain from the neulasta, but it typically subsides by 7 to 8 days after the shot. I get the neulasta on Wed, and by Thursday the following week I can stop taking the claritin and pain killers.

  • CAWR
    CAWR Member Posts: 13
    edited March 2021
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    LW422 - those scarves on etsy look great! I'll likely give them a try. I bought some pre-tied scarves with a cap on Amazon that I also like alot, but the chiffon shifts easily so I need to pin it. https://www.amazon.com/Chemo-Headwear-Turbans-Headwraps-Cancer/dp/B077PDM5L8?th=1&psc=1

  • lw422
    lw422 Member Posts: 1,399
    edited March 2021
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    CAWR--I have to say, that Etsy seller makes beautiful things. She finishes them off totally...no raw elastic showing anywhere. They are a bit pricey but I believe they are worth every penny. I bought this one and I absolutely love it...

    I suppose because I had long hair, I prefer the scarves with some "length," silly as that sounds. I also bought a printed one and I have a couple more in my cart.


  • lw422
    lw422 Member Posts: 1,399
    edited March 2021
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    Just popping in to say that I hope everyone is feeling OK today, and that your treatment this week goes well. I will be having Taxol #5 on Tuesday, so I'm "almost" halfway. I've been feeling pretty good so far, but having some belly cramping. Thankfully it passes pretty quickly.

    I bought some of the OPI nail strengthener that someone recommended to try to help save my nails. I got all my fingernails and toenails coated with it yesterday. Hopefully between the icing and the OPI I won't lose any!!

    I still have a short "fluff" of hair, so I'm glad I didn't shave my head. I'll hang on to the little bit for as long as I can.

  • aviva5675
    aviva5675 Member Posts: 836
    edited March 2021
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    No Claritin last night and today am fine. As we all know, who knows how tomorrow will be.

    I have had short hair for a long time and dont do anything with it so figure Ill be mostly ok with the hair loss. I notice tho last few days I am looking if any is falling out;even tugging at it! My day 18 is a week from tomorrow.

  • Jvfireball
    Jvfireball Member Posts: 56
    edited March 2021
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    LW422, Thanks for the nice message to everyone.

    I am having my second round of TC this Wednesday. I'm glad your hair is hanging in there!!! I didn't want it short....i was mad that I just spent the past two years growing it out...lol...

    So glad you are almost 1/2 way...keep fighting!!!

    I also hope everyone is doing well with treatments....hang in there ladies!!!

    Julie

  • JN5000
    JN5000 Member Posts: 72
    edited March 2021
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    Also popping in today to say I hope all treatmennts go well -- every day done is a day closer to being totally done! Congratulations everyone! We've come this far.

    I'm day 5 after after my second AC dense dose treatment. Once I get through the nadir, I'll consider myself halfway done with the AC. Glad I had supplies ready -- definitely has made it feel more like I have control. Hair is mostly gone. I'm going to continue Claritin through day 10 to hopefully avoid some bone pain.

    No mouth sores so far this time -- I iced during the Adriamycin as recommended AND through the Cytoxan this time. I will ice my mouth every time from now on. It's also a good way to get liquid in during Cytoxan, which is a good thing.

    Have a gooda day!

    Jennie




  • ab45
    ab45 Member Posts: 153
    edited March 2021
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    Hi All

    Check in, Finally feeling almost back to normalcy and Wednesday will be AC #3.. Will be glad when the 4th and final is done!! Then I start 4 Taxol..JN5000 I ice during Ac as well but keeping those darn mouth ulcers, manageable but aggravating for sure, hope you keep your mouth clear of them. I did buy some ice socks from Amazon for my upcoming taxol treatments LW422, have you tried them during treatment? I will be so excited when all of us in the group finish out our treatments and we all say WE MADE IT!! Keep pushing everyone, we got this!! #chemostrong!! I'll update after my third Ac but might take a few days, that neulsta kicks my butt!! Sending good vibes all

  • lw422
    lw422 Member Posts: 1,399
    edited March 2021
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    Hey AB45! Glad you are having a "normal" few days; enjoy them! You are halfway done with the Red Devil, girl!

    Yes, I have worn the icing socks, iced my hands, and sucked on ice chips during every treatment since the first one. I couldn't wear the icing gloves because I use my phone and stuff, so I bought an ice bag that the nurses fill with ice for me and I keep one hand on it until I can't stand it any longer, then switch hands. So far, so good... no sign of neuropathy and my nails all look good.

    I will continue to ice through Taxol and AC, and hope for the best.

  • moderators
    moderators Posts: 7,911
    edited March 2021
    Options

    Hey All, Just letting you know that we had a very nice first gathering, and we're making it a recurring meeting in case you would like to join.

    Going through Chemotherapy?

    Come be with others just starting or in the process of chemotherapy in a relaxing, confidential and supportive virtual environment. This will be a recurring meeting.

    To Register, download the Zoom app and click the link below.

    When: Tuesday, Mar , 2021 01:00 PM Eastern Time (US and Canada)

    Register in advance for this meeting (if you register once you will not need to register for future meetings):

    us02web.zoom.us/meeting/regist.....

    After registering, you will receive a confirmation email containing information about joining the meeting.

    See you then!