ER-, PR-, Her2+ Roll call

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Comments

  • djschmidt1
    djschmidt1 Posts: 103

    i have the same issue but wasnt aware of it until i went for a haircut recently. I havent tried anything yet so I will be curious to see what responses you get. It does still feel tender there too. Chemo the gift that keeps on giving…

  • catarina_fm
    catarina_fm Posts: 126

    @aborayis thank you for the info on nanoblading!

    @grammie2 well, I also had much less dense hair on the top of my head and was feeling sad about it, but I think it has finally improved a lot. I've been applying a natural serum for three weeks now. I don't know if you have access to this there:

    https://www.freshlycosmetics.com/en/shop/hair-growth-serum

    Even my sister said that she finally noticed my hair has been getting much denser in the past few days. I don't know if it's a coincidence, but the truth is that this serum has great reviews.

    I think you did well not telling your dad, he would have been worried, and it wasn’t worth it… That was a good decision on your part! Stay strong - you’ll see that your hair will grow. If you can give it a little boost with a non-aggressive product, I think it might help.

    A big hug!

  • beekaycro24
    beekaycro24 Posts: 134

    @grammie2 I think I'm going to be like you. I have hair coming in on top of my head, but it's so light you can only see it in really good lighting. My hubs says I have way more hair in back and on the sides, but I think it's just really darker. I read online to use baby shampoo, so that's what I've been doing. I even went to buy a baby hair brush yesterday, but my Walmart didn't have any! I bought the softest bristle brush I could find. Ran it over my head this morning. Girls! It felt SO good! My head hasn't had a brush on it since September…man, did it feel good…lol

    I went to a cancer center that is only 30 minutes away. It's the same doctors, just a closer location (the other is 1.5 hours away). I had only used the other one because I could get labs done there on the same morning of treatment. I have to go the closer one on the Monday before treatment between 8:00 and 9:30 to have blood drawn. They leave at 9:30 to go back to Gainesville to run the testing. My oncologist and his nurses are at the closer one on Wednesdays. Everything went well at my appointment. I went to the restroom and came out and the radiation techs were ready to take me back. However, my onc said when she gave my paperwork to the infusion team, they didn't have me on the schedule. They looked and I was erroneously scheduled for infusion at the Gainesville location. So, I went there after my simili. My radiation sounds a little different from what y'all have talked about. I laid on the table with my arms above my head and holding onto spindles while they positioned me. They then had me move my right arm to the top of my head and placed stickers on my torso. They did something to the pillow to make it hard. I was then sent through the CT machine. The radiologist approved the position. I had to sit up then lay back down to ensure they could repeat the position. We did. I go next Wednesday for a dry run, to be followed immediately by my first session. My oncology nurse in Gainesville said to be prepared…I will be tired. I'm hoping I'm the exception to that rule. I will be able to get my walks in as a trail I like to walk at is just down the road from the cancer center. I also go Friday for PT consult. I'm glad for that. I cannot believe how weak my right arm has become. Looking forward to getting strong again!

  • beekaycro24
    beekaycro24 Posts: 134

    Forgot to mention….I have eyelashes coming in on the bottoms of both eyes. I can't see anything on the top, though. Hopefully soon!

  • grammie2
    grammie2 Posts: 291

    @beekaycro24 I am so happy for you! I know you are glad to be moving forward!! Our radiation sounds similar. I had both arms over my head and holding on to handles but they stayed in that position. I had to turn my face to the right (radiating left side) and I did breath holds during the zaps. They made really small tattoo dots on 3 or 4 places. You probably don't do breath holds because it's on the right side maybe? How many sessions are you having? And in my experience, I felt way more tired during this than chemo. With chemo it lasted a couple of days or so and then was a little better until the next time. With radiation, it didn't ease up. But I worked every day until 2 and drove over an hour one way to radiation. I bet you will find your walking doable for sure!! Any yay on the bottom lashes!!!

  • snm
    snm Posts: 185

    @grammie2 I'm curious to see what the others say about hair issue! Congratulations on your freeing experience! I'm impressed by your selfless act to spare your dad. I do wonder about sparing my mom n dad if this cancer decides to show its face again. I don't want them to worry about me.

  • beekaycro24
    beekaycro24 Posts: 134

    @grammie2 I am doing radiation for six weeks, so 30 sessions. I'm thinking it might be 28 since I'm starting on a Wednesday…idk how that works. I'm with you on the holding the breath thinthing. I mean, you're just breathing normal and all of a sudden they say HOLD and you kinda panic to get a big enough breath to hold…lol. This happened during my chest & pelvic CT scans with contrast. It's so nerve wracking.

    @snm I think it depends on the age and health of your parents. I just know as a parent, I would be extremely hurt if my children kept something like this from me. I'm the type to jump in and help where I can (I'm a Leo and can definitely take charge), but I can also accept it if someone says "Too much!" or "Go away!"

  • minustwo
    minustwo Posts: 13,498

    12 years out from chemo & hair loss & all the rest of it. But to the hair issue…. My hair was wavy before I lost all hair to chemo. Thank heavens the hair did not come back under my arms since there's no way I wouldn't have cut myself. The hair in my head is pretty much down to my waist. That length is a Covid protest. But it is still thin. My hair was always fine, but it was thick. No longer like it used to be. Sigh… The best I can do it haul it back in a sort of pony tail.

  • grammie2
    grammie2 Posts: 291

    @beekaycro24 agree with you on the parent thing for sure. Dad was 87 when I was diagnosed and relied on me for a lot of things. And I too would be hurt if it were one of my kids at this point in our lives.

    The thinner areas on my head remind me of male pattern baldness 😟

  • beekaycro24
    beekaycro24 Posts: 134

    @grammie2 I agree with you on your dad, with him being that age and not doing well. There was no reason to worry him. On your hair, I would ask if there's anything you can take or apply. Mine looks patchy, but I can see the hair on top of my head in certain light…it's just super light. I think once it grows out some more it will be more noticeable like the darker spots. The light hair is the same length as the darker, you just can't see it. I try to fluff it up so it sticks out and is more noticeable…lol

    So far so good with the Kadcyla, except the dexamethasone in my pre-med infusion keeps me awake. I went to bed at 1:30 this morning, couldn't sleep so I got on my tablet. I didn't get sleepy until after 4:00 a.m. Luckily, I slept until after 9:00 so I did get almost my normal sleep hours. I vary anywhere from 5-6 hours of sleep each night. Occassionally I'll sleep 7, but that might happen once every other week. Since starting treatment, I do listen to my body and if I need to nap I will nap.

  • aborayis
    aborayis Posts: 504

    @grammie2 i think you gave your dad a beautiful gift.

    @beekaycro24 I’m so happy for you that you are seeing hair growing again, eyelashes included! I cold capped, and would say because of that kept about 2/3 of my hair. The hair that came out was where everyone is talking about, around the crown plus about halfway down the back of my head, and very noticeable to the point that I wore a wig for work and in public (also because I’m all gray and couldn’t dye my hair). It all has come back since stopping chemo 12/23 and initially had a sharp wave to it. I did a keratin straightening 8/24 once the short hair growing back in was about 4 inches long. I would say with the straightening it feels all about the same as before the chemo except that 1/3 is still much shorter than the rest because I have shoulder length hair. I think I have another year at least to go before the hair growing in is the same length as the rest, but with the straightening it mostly blends in. I think the cold capping helped with it all back in at the same thickness as prechemo. Did anyone else here cold cap?

    How are eyelashes going for everybody who’s finished chemo? Mine are still evolving. Mine used to be long, thick and curl up. Now they are still patchy, shorter and straight but seem to be filling in more and getting longer.

  • beekaycro24
    beekaycro24 Posts: 134

    No cold-capping here…I let my 11 yo granddaughter buzz cut mine when my hair started coming out after TCHP #1. I'm very happy to report that Kadcyla is being very nice to me right now. I had a couple of instances of nauseau yesterday, but Zofran took care of that. I even drove myself to my PT appointment an hour and half away…hubs had his own PT appointment to go to. Also, very happy to report no edema/swelling was seen or measured. I'm just stiff in my right arm. While I can get it into different positions, it takes a bit of concentration to do so. My right arm is also WAY weaker than my left (I'm right-handed, btw). So, I have some at-home exercises to do and go back once every 2 weeks for now. Once I get further along in radiation, I will start once a week. Fingers crossed things stay this way! :) I hope you all have an amazing weekend!!

  • jessybessy
    jessybessy Posts: 55
  • jessybessy
    jessybessy Posts: 55

    Hi everyone, had my CT scan in preparation for radiotherapy a couple of days ago. Surgery showed pcr (apart from a bit of DCIS).

    I know it's not a diagnostic scan, but I assume that if they saw anything unusual they would have to do something about it? For context I have no reason to believe that there's anything bad, I just am now very paranoid after everything lol.

  • djschmidt1
    djschmidt1 Posts: 103

    @jessybessy I completely understand your “paranoia” and I think it is very normal. I think we all can relate to that shell shock feeling we have as our lives just got turned upside down. Sending you a big hug.

  • grammie2
    grammie2 Posts: 291

    @jessybessy Awesome on the pcr!! That is what they want!! And yes! We all seem uneasy about things and I tend to downplay the good stuff sometimes because I'm afraid something bad is around the corner. Lot's of ups and down in the treatment stage!

    @beekaycro24 good to hear you are feeling well and no major issues with your new treatment!!!

    @aborayis that's interesting that you lost that area even when you cold capped. I still think that Phesgo effects hair growth. It does list it in SE's but it in conjunction with TC. Hard to find a SE list of stand alone Phesgo (without chemo). I'm holding out hope that once Phesgo is complete there will be a difference in the hair growth.