Starting chemotherapy March 2017

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  • floydee48
    floydee48 Member Posts: 3
    edited May 2017

    Here I am a week past treatment #4 of 6 of Neoadjunctive THCP and my energy is a lot lower than previous weeks. I'm not sure if this is a cumulative effect or maybe from the heat here in California. I'm a little frustrated as they even lowered my dose by 10% because of neuropathy. I have never experienced this kind of fatigue. Of course, I've never had cancer before either. Is this something everyone has had? My tumor has shrunk by half and my lymph nodes are now showing minimal involvement. I'm meeting with my surgeons on Friday....I just hope I have the energy to get there!!

    SoxFan75 - Yes on the ugly port! Don't get me wrong, I love the port, but mine is tilted up, and my nurses can't figure out why I have what looks like a huge pimple right on the top. They think maybe it's a stitch. Needless to say I was wearing a v neck shirt today and my husband said I should cover it with a band aid it's so ugly!


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  • Soxfan75
    Soxfan75 Member Posts: 115
    edited May 2017

    floydee48 - I have the same thing on top and my nurses said it was a stitch as well!!!! I'm wondering if they can do something about it.I'll ask tomorrow. My port sticks out and it's a huge lump with three bumps on it. So much for wearing strapless and/or spaghetti strap tank tops this summer. It's great to hear your tumor is shrinking. I'm on adjuvant TCHP and I'm getting #4 of 6 tomorrow. I've read about others who say they noticed a huge difference in their energy levels after #4 and I'm dreading it. I've been pretty lucky so far with not feeling too tired. I even ran a 5k yesterday with my daughter, but it sounds like that might all change after tomorrow's infusion.

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  • PowerpuffinSF2017
    PowerpuffinSF2017 Member Posts: 14
    edited May 2017

    I am wondering if anyone went through four cycles of THP and at the last cycle, you experienced more body aches and pains, and more hair shedding (I am using cold caps right now)? This last cycle seems to be lingering, and my hair is shedding more than before. I am about to start AC on Friday. Thanks.

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  • AliceAgnes
    AliceAgnes Member Posts: 78
    edited May 2017

    I have been through three cycles of Taxotere, Carboplatin, Herceptin, and Perjeta, and basically my hair has been falling out ever since my third week of chemo. I went bald on the top and front of my head first. I still have hair on the sides and back of my head, but those places are where I am gradually losing more hair even as I write this. I was born with a full head of thick, dark hair, and thick it had remained all my life until now.

    So far I have lucked out and not had any bone or muscle aches, but I have had all the fatigue and digestive disturbances that others have noted. I still have three more rounds of chemo to go, my next one being the day after Memorial Day. Then surgery will be scheduled for me, a mastectomy on my left side.

    I want to thank everyone who has been posting info on what to expect with surgery--well, actually, everyone who has been posting info on anything!

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  • Soxfan75
    Soxfan75 Member Posts: 115
    edited May 2017

    PowerPuffinSF2017 - How has your cold capping been going so far? I'm assuming your "T" is Taxol? Hopefully it won't be too bad once you start Adriamycin. My onc said to stick with it even if you lose more than 50% of your hair because your hair will grow back quicker. Good luck. i hope it goes well for you.

    AliceAgnes - I'm on the same regimen and I haven't had any bone or muscle aches either. Like you, I have had the digestive disturbances (which is such a nice way of putting it - LOL). I just finished #4 today so good luck on your #4 Tuesday. If you have any more questions about surgery, feel free to post them. Some of us have already been there and may be able to help.

    Lordhelpmetoo - I just want to let you know that I'm thinking of you today. I hope the surgery went well and you have a speedy recovery. Send prayers and positive thoughts!

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  • Tara17
    Tara17 Member Posts: 386
    edited May 2017

    hi ladies --just catching up on the posts fingertip sensitivity , so difficulty typing


    Soxfan--how was your 5K ? So impressed by your running !


    Kimburke and mommy Erin --hope all well , thinking of you


    Lordhelpmetoo ---your surgery was today -- thinking of you, hoping all went well, wishing you no pain, and a healthy speed recovery


    Limonia --thank you for all your surgery tips!!

    I finished #12 of weekly taxol on monday. Now awaiting surgery on june 7th

    Hugs to all,

    Tar

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  • Soxfan75
    Soxfan75 Member Posts: 115
    edited May 2017

    Tara17 - I hope you're recovering well from your chemo treatments. It must be nice to get them finished and out of the way so you can start mentally preparing yourself for surgery. How's that going?

    My second 5k went really well. I got to run it with my 10 year old daughter as a practice with her running team for an upcoming 5k we're running next Saturday. I was so impressed with her. She ended up running the 3.1 miles for her own race and ran an extra mile to encourage a team mate who was having trouble finishing. How sweet is that? I'm so glad that to this point I've felt good enough to continue to exercise, but I'm a little nervous about my 4th treatment today since I've heard that the 4th is when the cumulative aspect of the side effects really catches up to you. Hopefully, I'll skate through as easily as I have been, but if not, I can't complain since I've done this well for so long.

    One thing I can't figure out is how I could have possibly gained four pounds in the last three weeks with all of the exercise I've been doing. I'm praying that it's muscle, but somehow I doubt it. :(

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  • Limonia
    Limonia Member Posts: 53
    edited May 2017

    Soxfan75 - I think it *is* muscle ! :-)

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  • PowerpuffinSF2017
    PowerpuffinSF2017 Member Posts: 14
    edited May 2017
    Thank you soxfan75. I'm using the same cold cap vendor. I've lost 30+% of my hair though no bald patches so I don't need to wear a wig. I'm incredibly anxious about the AC given what I've read. My hope is I can go through the 4 cycles of AC without having to wear my wig.
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  • Soxfan75
    Soxfan75 Member Posts: 115
    edited May 2017

    PowerpuffinSf2017 - AC is a tough one on hair. I hope it hangs in there. Thankfully you only have four. I've seen a lot of recommendations on other boards about using Toppix to cover any thin areas. That might get you by if it gets too thn and you need scalp coverage. I have mine ready to go just in case.

    Limonia - it doesn't look that way but I hope you're right. My taste buds start to come back during week 3 right before my next chemo so I find that I eat naughtier foods and snack a lot more during that last week. I have a feeling that might be the culprit

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  • MommyErin
    MommyErin Member Posts: 187
    edited May 2017

    I'm receiving TCHP as well. #4 on Thursday (I got an extra week off to go on family vacation we planned before my diagnosis). I'm hoping recovery is not worse than the previous because I'm feeling GREAT right now, but I guess we'll see.

    Regarding hair loss, I lost a ton from day 10 to 14 or so following treatment #1, but since then have lost very little. No cold capping, but for whatever reason the crazy shedding pretty stopped after my first treatment cycle. So, I guess it must vary.

    Regarding bone/muscle pain...just from nulasta for a few days.

    Hang in there ladies! Glad to see some are finishing up. Big hugs

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  • tinker-bell
    tinker-bell Member Posts: 62
    edited May 2017

    Soxfan - wow running 5K on chemo! That's really impressive.

    Tara17 you're nearly done with chemo? That's great!

    I've been quiet here because I've mainly been on taxol forum - I've got 2 more to go and then I'm done! Still have neoropathy and bone pain but it doesn't seem to have worsened much. Still doing ice gloves and slippers and acupuncture for neuropathy. So far have all my hair (cold cap I love it!) and nails - touch wood!

    I had a lymphedema scare because of pain/swelling on surgery side. They won't know till chemo finished.then radiotherapy for 3 weeks

    I hope you are all coping ok and getting through your treatments with minimal side effects.

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  • Soxfan75
    Soxfan75 Member Posts: 115
    edited May 2017

    MommyErin - I'm glad you're feeling great right now. TCHP #4 doesn't seem to be much worse than the last three so I'm thankful for that. Hopefully you'll have the same experience with yours coming up.

    tinker-bell - Wow! Only two more? You must be so excited! Do you find the icing and acupuncture working for your neuropathy? I've been icing my hands and feet, and my hands are okay so far, but I feel some twinges in my feet every now and again. Hopefully, it doesn't get worse.

    It's been pretty quiet on this board as of late. I hope you are all doing well. I know some have had surgery or are having surgery soon, and I just want you to know that I'm thinking about you!

    Hugs to all!

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  • Tara17
    Tara17 Member Posts: 386
    edited June 2017

    hi! I hope everyone is doing well. I am done with chemo, preparing myself mentally for surgery on june 7th. I know that its medically the right thing for me to do ---doing surgery avoids radiation and i wanted to avoid radiation. However, i have been surprised by the emotional reaction i have been experiencing thinking of the loss of a breast and body image. I know that its a matter of havign the correct narrative in my head ---i am treating this cancer and maximizing what i can do ---hoping i adjust well. I will power through! Thank you everyone for understanding and your support.


    This forum is really a lifelin

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  • librygddess
    librygddess Member Posts: 3
    edited June 2017

    Hello Everyone, I have been reading the post on BCO since I was diagnosed in February. I had my 8th Taxol treatment yesterday. I was informed that July 13 I will be starting A/C. Anything that has the nick name of "red devil" scares me. I have read that it is doable but stronger than Taxol. I am blessed with few SE on Taxol. I still have 25%of my hair and my eyelashes and eyebrows are still present. What should I expect on A/C?

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  • Moderators
    Moderators Member Posts: 25,912
    edited June 2017

    Welcome librygddess! You've come to the best place for support and answers. We're sure you'll have some members stopping by soon to welcome you. In the meantime, please let us know if you need anything at all!

    --The Mods

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  • Scrafgal
    Scrafgal Member Posts: 631
    edited June 2017

    librygddess...I will finish my Taxol next Thursday (#12) and start FAC on June 15th. I have been following posts here and in the Taxol group. I have done well on Taxol but am concerned about FAC too. I will get 4 cycles every 3 weeks. I will post my experience!

    All...This is my first post but you have been quite helpful through my Taxol experience that started in March. Thank you!

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  • kimburke
    kimburke Member Posts: 34
    edited June 2017

    Hi ladies,

    Tara17 - great to hear you are finished with chemo now and moving on to surgery. Wishing you well. Keep us posted.

    Lordhelpmetoo- I hope you are recovering well from the surgery. Looking out for you in the chat.

    Soxfan75- running marathons still, Congrats. I have still to start exercising. I am so tired all the time. Basic activity makes me physically exhausted.

    MommyErin- good to hear you are doing well and not much more hair loss

    I see some new names as well, welcome to the group chat.

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  • Tara17
    Tara17 Member Posts: 386
    edited June 2017

    nice to see updates from everyone that everyone is moving forward . Wishing everyone well


    My unilateral mastectomy is scheduled for wednesday june 7th ---only two days away. I am nervous about surgery; trying to process the emotional side of this ---the loss of a breast, thinking about body image etc. Will it be weird to see myself without a nipple on that side ? I hope i process everything well. I know that its the right step for the cancer ; i wish i never had this cancer and placed in the situation of making all these decisions. I know you ladies understand .


    I know that mastectomy is he right decision for me to treat this awful disease , but i have found myself in tears over this last week. It will be the last treatment step in this BC journey and i am getting immediate tissue expander placement. Please keep me in your prayers and i welcome any words or thoughts of encouragement. I have been strong since diagnosis through chemotherapy but somehow the thought ofsurgery is testing me.


    Thank you ladies. Hugs to all .

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  • Scrafgal
    Scrafgal Member Posts: 631
    edited June 2017

    Tara17

    My journey went in the reverse order...mastectomy in February (with immediate tissue expander) and then chemo starting in March. I will finish Taxol next week and then head into FAC one week later. When that is done, I will have my final exchange surgery for my implant.

    As for your feelings about the mastectomy, I can relate totally. I was very sad, especially the night before the surgery. I just couldn't believe that this was happening to me! It is a big deal and worthy of shedding a few tears! I did!

    However, like you, I knew that it was the right decision. As I touched my breast the night before, I also felt the lump. That put things in perspective for me. I love my life more than I loved my breast. I wanted the tumor, which had begun to haunt me daily, out of my body.

    After waking up from the surgery, I looked at the scar in a compact mirror that my sister handed me. To be honest, the scar on the reconstructed breast didn't look horrible (at least compared to my imagined-version). It simply looked like a scar on my breast. After the surgery, you will need to take care of the wound and focus on healing. After four months, I have found myself comfortable with how things look for now, and it will look better when the reconstruction is complete. No, it doesn't look the same as my natural breast on the other side, but all in all, it's not that bad. And, because I felt that reconstruction was the best choice for me, I felt more confident about myself, by having it done immediately.

    In the end, I think that the whole journey is just really long and, no what the order of events (i.e.surgery first or last), the end just seems to be the hardest. It's really okay to be teary-eyed about any part of the process, but the fact that you soldier on is what we celebrate. You are almost there! I can't wait until you get to the other side of the surgery and begin to heal! Keep us posted!




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  • Tara17
    Tara17 Member Posts: 386
    edited June 2017

    scrafgal --thank you for your post --i hung on to every word in your post and it is so helpful-- it is affirming to know i am not alone in shedding tears and to know that others too feel like this before the surgery . the way you outlined how you gained perspective is helpful --yes, I love my life more than i love my breast. I will soldier on. I think you are very right that this is a very long process and the final steps are tiring no matter what . Thank you so much for your wise response . I will reread it before surgery . So grateful for this support!


    I think you will do great with FAC therapy --am sending all good wishes yoru way for this next step for you . Hugs, tara

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  • Limonia
    Limonia Member Posts: 53
    edited June 2017

    Hello All,

    Tara17 - Congrats on finishing your treatment - a huge step...you made it through and are inspiring to me. You will get through the surgery. Remember that anything you experience is totally normal. You will be ok. I previously posted a bunch of considerations for surgery in detail, however in my experience, the top things to keep in mind to help:

    1. Take the meds. Keep on top of the pain

    2. Rest and nap when you need to

    3. Do the stretches they recommend

    4. Lots of water at the beginning

    5. *** follow the weight restrictions and do not push yourself. It is not worth it. Get someone to help with the laundry, cleaning, making beds, cooking...all of it if needed. It is not worth stretching further than you should or carrying heavier than you should to accomplish a home task. Give your body time to heal properly and you will be in a better place in the long run :-)


    *** In other news, ladies, my wound is practically fully healed (thank gd!) ...and I am starting my first chemo this tuesday. It's very scary. your encouragement and support is most welcome,


    Limonia,

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  • Tara17
    Tara17 Member Posts: 386
    edited June 2017

    Limonia thank you for reinforcing these tips and the encouragement . I am so glad that yoru wound is healing well enough for you to start chemo! Yes its scary before the first chemo, that is totally normal -- but i can tell you that you will be fine --its the anticipation of the unknown that is scary the first time and all of it will seem strange at first -- being in the waiting room, then doing the chemo check and you are like "is it really my name on those bags" . But then you get the hang of the routine and you will get to know and like the chemo nurses . In reality , chemo is very do-able. With how you hvae managed surgery and its complications with wound etc so well, i feel confident that you will do really well with chemo , The actual chemo infusion doesnt feel like aything going in. They have become so good at managing chemo side effects that your job is to just follow all the instructions and report any symptoms to the oncology nurses. You'll do amazing , look how far you have already come ! We are here to support you every step of the way

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  • Scrafgal
    Scrafgal Member Posts: 631
    edited June 2017

    Limonia, I don't know what chemo regimen you are starting.  I am completing Taxol on Thursday, and I had a pretty good experience all of the way. In fact, I am heading to a Tai Chi class in about an hour, and I've been working out doing Pilates and Elliptical cardio throughout the treatment weeks.  I, too, was worried for the first treatment, but it turned out just fine.  I actually enjoyed the infusion time reading, texting etc. By the time I got tired of being there, it was over!  Friends who have visited with me are wondering what kind of chemo they use these days, since I looked a lot better than they expected.  Tara17's experiences reflect my own  You just get used to the whole routine! 

    Tara17, I  am really worried about FAC since almost everyone says it is much worse than Taxol. I've read and heard too many horror stories. I keep imaging myself going in there next week and just telling my oncologist that I'm not going to do it!  However, your encouragement was helpful and, remembering how I felt before starting Taxol, I am just going to march in there and do what I have to do! I wish you well on your surgery tomorrow, which I am certain will be fine!   I also echo Limonia's comments--especially not overdoing it while you are recovering.  I followed instructions (everyone was surprised by that!), but I knew that I didn't want any complications because I didn't want to delay my chemo. I actually waited 2 additional weeks after getting the full go-ahead to return to normal activities, before I got back to Pilates! Once I did get back to it, I felt great!  No complications! 


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  • AliceAgnes
    AliceAgnes Member Posts: 78
    edited June 2017

    Ditto to all who are saying take your rest and eat right. I just hit my nader point following my 4th of six chemos. But on Sunday I got carried away with a PowerPoint project I was working on for a friend, and I spent hours at the computer while forgetting to eat. That night I grabbed fast food (shake and a hamburger--dumb!) and paid a price. I was up half the night throwing up and couldn't swallow the anti-nausea pills I had been prescribed. Slept all next day then got sick again Monday night. Today I wound up at the cancer center having lost ten pounds (in water weight, they said) and getting fluids intravenously along with a different anti-nausea drug from the pill I'd been prescribed. Their advice is to eat only very bland food, very slowly and in small portions, for the next couple of days. Over the weekend I had been feeling so good that I overdid it. Will try not to make that mistake again!

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  • Soxfan75
    Soxfan75 Member Posts: 115
    edited June 2017

    Scrafgal - Your message to Tara17 was really well-written. I felt the exact same way you did about the mastectomy, the scar, etc. I don't know that I ever really grieved the loss of my breasts, but through all of this, I've just tried to keep my eye on the prize...to be a cancer survivor.

    Tara17 - I just want to let you know that I'm sending lots of prayers and positive vibes your way tomorrow. The loss of a body part is a big deal no matter what type of body part it is. It's a part of you and your angst and tears are completely understandable. Please take care of yourself and follow all of your doctor's instructions. You'll get through this and we'll all be here for you on the other side.

    Limonia - Great advice. How are you feeling? I hope your chemo went well. Which chemo regimen are you on?

    AliceAgnes - I'm so sorry you've had a rough couple of days. It's so easy to forget to eat when you're busy and it's scary how quickly the nausea can get away from you. I hope you start feeling better soon.

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  • Soxfan75
    Soxfan75 Member Posts: 115
    edited June 2017

    Found this on another forum and I'd give credit, but that person found it on Facebook. This describes it to a tee.

    What's it like to go through cancer treatment? It's something like this: one day, you're minding your own business, you open the fridge to get some breakfast, and OH MY GOD THERE'S A MOUNTAIN LION IN YOUR FRIDGE.

    Wait, what? How? Why is there a mountain lion in your fridge? NO TIME TO EXPLAIN. RUN! THE MOUNTAIN LION WILL KILL YOU! UNLESS YOU FIND SOMETHING EVEN MORE FEROCIOUS TO KILL IT FIRST!

    So you take off running, and the mountain lion is right behind you. You know the only thing that can kill a mountain lion is a bear, and the only bear is on top of the mountain, so you better find that bear. You start running up the mountain in hopes of finding the bear. Your friends desperately want to help, but they are powerless against mountain lions, as mountain lions are godless killing machines. But they really want to help, so they're cheering you on and bringing you paper cups of water and orange slices as you run up the mountain and yelling at the mountain lion - "GET LOST, MOUNTAIN LION, NO ONE LIKES YOU" - and you really appreciate the support, but the mountain lion is still coming.

    Also, for some reason, there's someone in the crowd who's yelling "that's not really a mountain lion, it's a puma" and another person yelling "I read that mountain lions are allergic to kale, have you tried rubbing kale on it?"

    As you're running up the mountain, you see other people fleeing their own mountain lions. Some of the mountain lions seem comparatively wimpy - they're half grown and only have three legs or whatever, and you think to yourself - why couldn't I have gotten one of those mountain lions? But then you look over at the people who are fleeing mountain lions the size of a monster truck with huge prehistoric saber fangs, and you feel like an asshole for even thinking that - and besides, who in their right mind would want to fight a mountain lion, even a three-legged one?

    Finally, the person closest to you, whose job it is to take care of you - maybe a parent or sibling or best friend or, in my case, my husband - comes barging out of the woods and jumps on the mountain lion, whaling on it and screaming "GODDAMMIT MOUNTAIN LION, STOP TRYING TO EAT MY WIFE," and the mountain lion punches your husband right in the face. Now your husband (or whatever) is rolling around on the ground clutching his nose, and he's bought you some time, but you still need to get to the top of the mountain.

    Eventually you reach the top, finally, and the bear is there. Waiting. For both of you. You rush right up to the bear, and the bear rushes the mountain lion, but the bear has to go through you to get to the mountain lion, and in doing so, the bear TOTALLY KICKS YOUR ASS, but not before it also punches your husband in the face. And your husband is now staggering around with a black eye and bloody nose, and saying "can I get some help, I've been punched in the face by two apex predators and I think my nose is broken," and all you can say is "I'M KIND OF BUSY IN CASE YOU HADN'T NOTICED I'M FIGHTING A MOUNTAIN LION."

    Then, IF YOU ARE LUCKY, the bear leaps on the mountain lion and they are locked in epic battle until finally the two of them roll off a cliff edge together, and the mountain lion is dead. Maybe. You're not sure - it fell off the cliff, but mountain lions are crafty. It could come back at any moment.

    And all your friends come running up to you and say "that was amazing! You're so brave, we're so proud of you! You didn't die! That must be a huge relief!" Meanwhile, you blew out both your knees, you're having an asthma attack, you twisted your ankle, and also you have been mauled by a bear. And everyone says "boy, you must be excited to walk down the mountain!" And all you can think as you stagger to your feet is "fuck this mountain, I never wanted to climb it in the first place."

    — Caitlin Feeley - the one, the only, the magnificent.

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  • Scrafgal
    Scrafgal Member Posts: 631
    edited June 2017

    Soxfan75

    LOVED THIS!!!!°

    Just got home from the 12th mauling by Taxol....looking around the corner for a mauling by FAC next week.

    Thanks for sharing!

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  • Tara17
    Tara17 Member Posts: 386
    edited June 2017

    soxfan , totally loved this analogy ! Laughed out loud, captures everyhting so perfectly!

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  • Tara17
    Tara17 Member Posts: 386
    edited June 2017

    hi all

    I had my unilateral left mastectomy on wednesday. had many mixed emotions regarding loss of breast, had tears, second guessed myself etc etc in the couple of weeks leading up to this. Then made a conscious decision that i had to be calm and strong for surgery.

    On tuesday, i lined up conversations with friends i knew who would be enocuraging and i absorbed their words, i surrouncded myself with support both in real life and here online.

    I wrote in my journal ---lots of positive calm statements.

    I did my hibicleans shower early in the morning and went to the preop check in. As the presurgical nurse was explaining things to me , and asked me if the signature ont he consent form was indeed mine and explained more, i cried. She was so nice, she said she understood the feelings behind losing a breast but reminded me that it was trying to kill me. I kept my focus on why i was doing this surgery --i was makign this choice becuase i valued my life and peace of mind more than my breast. I thought of all the positive thoughts and prayers surrounding me

    I was wheeled into the OR. My surgeon said hi to me and they moved me on the table. After that i just woke up in my room --my first thought was relief that this was done. I asked for my best friend and family to come in.

    The plastic surgery PA came in --they said they had filled the tissue expander in the OR so i wasnt flat. I took a look at myself when she undid the dressings -- stitches, etc but some projection and i felt ok with it. It was not what i had dreaded.

    Overall, i am glad i made this decision in this treatment journey.

    I just want to reinforce to everyone here that mixed feelings, tears, wanting to run away from it all are all completely normal before surgery. And for that matter, any next new step in treatment which belongs to the unknown category before actually doing it Sit with yourself and make sure YOU feel that YOU are making the decision for mastectomy --not just following the doctors or your family or friends. And if you can feel that way about yoru decision, you will feel relief after surgery and make it through. Think of all the support you have for the times you are alone with yoru doctor, your nurse, in the or before they put you to sleep


    Now is the pain management, constipaiton with narcotics, drains etc , very hoarse voice with the intubation, was sent home mainly with tylenol, and NSAIDs, and told toonly to use narcotics for breakthrough pain --just like chemo side effects, there is an intervention for each of these, so now i just follow doctors instructions.

    I really want to thank everyone here, especially soxfan, Limonia, scrafgal for all the details you have shared about your own surgical journeys and supporting me through this with your stories and encouragement and advice

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