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Chemo Starting September 2018

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  • JNKK
    JNKK Member Posts: 68
    edited September 2018
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    @wonderweg, are you taking clarintin for the bone pain? I was told by my doctor to take it on the day of infusion then 2-3 days afterwards, but I also read to take it for 3-5 days afterwards.

    @ezrunner, I am thinking to get a fun wig to wear, but part of me want to look as close to my norm as possible. I haven’t gone out wig shopping yet, I have been putting it off.. The thought of losing my hair is depressing.

  • Sadlynew2018
    Sadlynew2018 Member Posts: 173
    edited September 2018
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    wanderweg- thanks for the warm welcome. The scary part is not knowing what course of treatment they will prescribe, how long will it take, when can I think about a temporary finish line of this horrific nightmare. I’ve heard discussion of adiramycin? Not sure I spelled that correctly. I overheard my SO mention it in passing as a possibility. Is that also something that was discussed with you? I’m clueless on all this and (very obviously) need to research things. Ugh.

    Hugs.
  • piksie
    piksie Member Posts: 132
    edited September 2018
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    Good morning, September Warriors. I got my port yesterday. Not a single pain until this morning. Now I feel like someone bonked me on the clavicle with a hammer. I don't start chemo until 9/12, but this was the only available spot before 9/10 and only because of a cancellation. Sheesh! I guess it will be good and healed by then.

    I'm icing hands and feet, but not going to worry about my hair. Some time around the first infusion I will cut it short. I think I'll give my girl carte blanche and tell her to surprise me. It's only going to be there for a couple weeks. I tell myself now that my head is a new fashion piece, just like shoes. I might get 2-3 wigs and several head covers/hats. But we'll see how I feel when the time comes...

    To those of you with kids, how are you approaching the hair loss? Mine are 13 and 10 and really not all that excited to have a bald mom, but I'm talking to them about it and trying to prepare them. I thought I might go wigless in my house, but now I will likely wear something on my head when they're around. I've made the offer to them to shave my head when the time comes. I read in a few places that it can be beneficial to them, but I don't know... I've got a bunch of friends who have volunteered and want to make it a party if the boys don't want to do it. :)

    Do something for YOU today. xoxo

  • moderators
    moderators Posts: 7,918
    edited September 2018
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    Hi All, Congratulations Wanderweg on getting your first chemo session done.

    MollyinTO, each person experiences chemotherapy differently, and the side effects vary widely. Fingers crossed that you feel well enough to continue (in a modified manner) with your work, etc.

    Welcome EZrunner, and sorry that you too have joined us all here. Many find it helpful to quickly get an email list together to communicate with friends and loved ones, as not to have to continually repeat how you are and what's going on. That can get really tiresome over time.

    Thinking of all of you!


    Medicating The Mods

  • Tigerlily318
    Tigerlily318 Member Posts: 115
    edited September 2018
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    Hi all, welcome...🙁.......

    @wanderweg, I have/had the neulasta shot. If went off Thursday night. There is a loud alarm and then it starts and clicks until it is done and then sounds again. It did not hurt, but better to stay still while it is going, I was moving around and could feel the pick when I moved. I take Claritin anyway and I am a little achy but that is it. I have a desire to move but no energy but have managed a 2 mile or so walk each day, starting Thursday.

    My issues are no energy and really bad cramping. Went to acupuncture and it is worse but that may be good. Took pecid and waiting for call back from on call. Not sure if it is the chemo or one of the nausea medicines which I have stopped taking.

    Otherwise no mouth sores, no rash, no nausea

  • wanderweg
    wanderweg Member Posts: 487
    edited September 2018
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    My husband cut my hair super short today in advance of the hair loss I'm expecting in another 12 days or so. I thought it would help to get myself used to it - and it surprised me to find out I like it short!

    image


    @ezrunner - Welcome. I agree about it feeling like being in a bad movie! I decided not to cold cap, either. I have always been hypersentive to cold. I'm not buying a wig - all my friends who have been through this say they only wore their once or twice. I've got some caps and scarves ready to go.

    @sadlynew - Adriamycin wasn't discussed as an option with me. Just the four rounds of TC. Both MOs I talked with, in two different groups, recommended that protocol.

    @JNKK - I take claritin daily for allergies, so I'm covered there.

    @Tigerliliy - good to know about the neulasta. I'll take that first alarm as my cue to just sit down until it's done. I feel like I'm watching the clock and waiting for it to go off!


  • pcranky
    pcranky Member Posts: 81
    edited September 2018
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    Wanderweg! You have lovely bone structure - you can pull off very short hair very well!

  • Cupoftea18
    Cupoftea18 Member Posts: 6
    edited September 2018
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    wanderweg: You were very brave to just get it shaved ahead of the shedding. You really have the look to pull it off. I did buy a wig last week that is very similar in style and color to my own hair. Also, have bought a couple of hats and scarves to get prepared. Definitely not looking forward to losing my hair, since someome told me it would take two years to be the below the chin length again.

    Had my first taxol plus herceptin on Wednesday with the premeds. Infusion went fine and the next day I had the steroids giving me lots of energy, on Friday somewhat subdued and during the night had very sharp throbbing pains in joint and leg bones. Miserable night and into Saturday. I read on here about taking benedryl, so I went out and bought Advil PM which has benedryl plus pain meds. Waiting to see if it helps this eve. I can't believe so many people have gone through this. I think it is awful already!

  • WC3
    WC3 Member Posts: 658
    edited September 2018
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    EZRunner:

    I'm using Dignicap and while it is cold and unpleasant, it's not a constant ice cream headache.

  • WC3
    WC3 Member Posts: 658
    edited September 2018
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    Tigerlily318:

    I agree. It is hard to know. There is a lot of conflicting advice out there about diet and cancer unfortunately.


  • nowheregirl
    nowheregirl Member Posts: 55
    edited September 2018
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    Hi everyone,

    First off, I am sorry you had to join this club but trust me, it will be over. My dx was stage IIb with a 3.5cm tumor along with 2 positive lymph nodes. I did 12 x weekly Taxol followed by 4 x every 4 weeks AC before surgery, then another 12 x weekly Taxol after surgery followed by rads and hormone therapy. But it's been 12 years since my last chemo infusion and I'm healthier than ever now.

    Anyway, I just popped in to wish all of you the best and post a few pictures of myself for those of you who are worried about hair. I completely shaved my hair off a day before my first chemo as I didn't want to see it slowly fall out. I hope these photo give you some hope.


    Me being bald

    image


    15 months after the last chemo

    image


    3 years out

    image


    Now

    image



  • moderators
    moderators Posts: 7,918
    edited September 2018
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    wanderweg, you look terrific in short hair!

    nowheregirl, wow, thank you so much for sharing your experience here, and your fabulous photos! Very inspiring in many ways.

    Cupoftea18, so sorry to hear about your pain post treatment. Please do report back if the Advil PM was helpful to your sleep!

  • JNKK
    JNKK Member Posts: 68
    edited September 2018
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    Tigerlily & Wanderweg, today is your day 4 and 5? How are you ladies feeling? I will start TC tomorrow morning but would love to hear about your experience so far post first infusion. Thank you

  • pcranky
    pcranky Member Posts: 81
    edited September 2018
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    JNKK Good luck tomorrow!

  • JNKK
    JNKK Member Posts: 68
    edited September 2018
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    thank you pcranky. I am scared out of my mind

  • pcranky
    pcranky Member Posts: 81
    edited September 2018
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    I know its so scary (i am too, I'm starting Tuesday) but you can do it!

    Think of how much you've already done!

  • JNKK
    JNKK Member Posts: 68
    edited September 2018
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    Thank you Pcranky. I am trying to stay positive!

  • kk2018
    kk2018 Member Posts: 54
    edited September 2018
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    piksie-I have 2 daughters-10 and 7. My 10 yo “caught” me wig shopping online-we have been using a staged approach to discuss this whole process and hadn’t gotten to hair loss yet. I invited her to help me shop/pick colors/styles. This piqued her interest and she has seemed philosophical and accepting of the idea but did make a comment that I should wear my wig “all the time”. I told her that wouldn’t happen and she still seemed ok. My 7 yo has been teary about it. It breaks my heart. She has always, from the time she was a nursing babe to just last week playing with and telling me how beautiful It is, been attached to my hair. I loved my breasts-they were awesome in my youth and they made my babies chubby and happy for 3+ years. Yet losing them was nothing compared to how I feel about losing my hair. I’m not going to cold cap. I’m hoping to come to some sort of peace before it starts to fall out. This process is one hell of an emotional exercise.

  • wanderweg
    wanderweg Member Posts: 487
    edited September 2018
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    Thanks, moderators, pcranky and cupoftea! I've never had hair this short (well, except when I was a baby), so it's an interesting change.

    Day 3 after my first round and I'm waiting to see what side effects I'll have. So far just some stomach cramps, fatigue and a little headache. I'm trying to drink lots and lots of water to keep flushing the poisons out.

    @Tigerlily - Was your neulasta injector on your arm or belly? Mine was on my belly and even though I was lying perfectly still, I could feel it after about 10 minutes. Sort of a pinching, but it only lasted another 10-15 minutes. Maybe just the movement of my breathing made it so I could feel it. No bone aches yet.


  • Tigerlily318
    Tigerlily318 Member Posts: 115
    edited September 2018
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    Hi all, to answer the various questions... I am day 5 I guess (infusion was Wed). I am starting to feel better today. I ended up constipated and by the time I realized it it had happened - spoke to a nurse yesteday and taking Colase (stool softener) a few times day day. Got a bottle of CVS brand. The constant stabbing pain is starting now to go away and things are moving. Also got some fiber gummies as fruit is not appealing right now. I am unsure what specifically caused this (chemo or meds)but will start taking the softener and fiber a few days days before chemo and continue unless they give me better advice. I also think the fatigue was because of the steroid withdrawal and they said we could they taper differently next time.

    My neulasta was on my arm. I have had joint and bone pain. Not awful but sucked with the other side effects. They kept me from moving/sleeping well. I feel very achy this morning but went for a walk and then to Yin Yoga and then another walk and much better. Plus taking Advil.

    And I just feel out of sorts. Everyone wants to help but no one can so awkward. I kind of want to be left alone. It is hard on everyone, but sent my husband to the beach today and spent some time with my dad who is the best of the lot at this and have finally returned text to people.

    So my advice? Water!!!!!! And move, and stool softener unless you have the opposite problem. And fiber. Just got some blue fish to grill tonight and some vegetables. Starting to want to eat something other than smoothies, pita, and hummus (I am choosing not to think that chick peas are a problem with estrogen based cancer....).

    Hair looks great wanderweg!!

  • Cupoftea18
    Cupoftea18 Member Posts: 6
    edited September 2018
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    wanderweg: Actually, I took Aleve PM not Advil PM last night and woke up feeling pretty normal today, in fact all day. I was amazed after the miserable Friday night and Saturday. I was busy at church and did some cooking for Monday and had the energy. Tuesday is my 2nd treatment, so wondering how it will go next week. ANYONE doing Taxol and herceptin together?

    Nowheregirl: Thank you for sharing that some day hair will return. Not looking forward to losing it of course. Everytime my head tingles I wonder.

    It is so helpful to be reading posts on this forum. I thank all of you.

  • beeline
    beeline Member Posts: 193
    edited September 2018
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    Piksie and KK2018 - I have 2 daughters 7 and 5, so even a bit younger yet. I told them I would have to take medicine that will make me very tired and make my hair fall out since I figure those are the most obvious things that will impact them/they will notice. My older daughter in particular hates surprises so I made sure to get it out there asap. In terms of the actual hair loss, I've had very short/unusual hair for many years so it may not be as much of a shock for them as there is less to lose, but for me it is def part of my identity that will be hard to say good bye to even temporarily.

    Wanderweg - love the short cut on you!

    Good luck to everyone in the thick of it. I have my first MO appt on Friday but have been told things will move pretty fast after that.

  • EZrunner
    EZrunner Member Posts: 4
    edited September 2018
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    WanderWeg you look amazing with short hair!

    WC3 I have to confess I'm still too much of a wimp. I took my daughter and her friend out for Mexican food and I had a margarita that gave me the ice cream headache at the first sip and I just had to laugh at myself. I love running and will go all day no matter the fatigue and cramping but one cold headache has me building a blanket fort and curling into a ball. But thank you for the recommendation, I hope it works perfectly for you.

    JNKK- we've got this. I can't find who suggested it, but one of our lovely group has the viewpoint of hair as a fashion accessory, like shoes, rather than a static feature. I love this, it makes me feel more in control! Thank you to the woman who said it, you changed my viewpoint!

    Nowheregirl, thank you for the success story, I really needed to read this today and I love that you describe yourself as healthier than before. You are beautiful both inside and out.

    My kids are 19 and 25 and both are moving away from home this month. My daughter really needs me to show my strong public face in order to reassure her as she goes off to college. I'm going to throw a small party with my close friends, family, and champagne ( plus good food) to shave my head. My husband and friends know how I really feel but my kids don't need to know how much this step is wreaking me. My daughter suggested a henna tattoo on my scalp so when she comes home for Thanksgiving we will do this together. It will only be seen at home but she and I will make it awesome. My son jokingly suggested I take up swimming since I'll be more aerodynamic in the water. I laughed at first but now I'm really thinking about swimming as a way to get some movement in. I think I'm going to make him teach me proper swim strokes before he moves to start his new career. I'm sad but also happy my kids are flying the nest so they don't witness any really dark days. I've already gotten my husband to agree that all news will minimize bad days when talking to our kids.

    I hope everyone is enjoying this 3 day weekend(assuming we are all located in the States). For those who’ve had their first infusions I hope your symptoms are manageable and for those starting this week I’ll keep you all in my thoughts.

  • EZrunner
    EZrunner Member Posts: 4
    edited September 2018
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    I have a question for those who are taking Neulasta. Which type of Claritin was recommended? The pseudoephedrine or the other type? The chemo nurse who did my teaching didn't know anything about using Claritin to lessen bone pain and my MO is on vacation.

  • WC3
    WC3 Member Posts: 658
    edited September 2018
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    EZRunner:

    I have my 5th infusion next week and my hair is thinner on top than not but I'm not dissatisfied. I had initially planned to just let it fall out but there were a few reasons that was turning out to be more of a hassle than not and I'm on Taxotere which can cause permanant hair loss so that factored in to my decision. I would have forgone the cap if I were on Taxol instead as it does not cause permanent hair loss to the extent that the Taxotere can and I would not have been able to afford all of the capping sessions as I think Taxol is usually dosed weekly rather than every two or three weeks like Taxotere.

  • beeline
    beeline Member Posts: 193
    edited September 2018
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    EZrunner - hello to a fellow runner! I am hoping to be able to keep it up a bit during chemo, not sure about my chances. In terms of the Claritin, I can’t speak from experience but from what I’ve read here you want the regular (not “D”).

  • JNKK
    JNKK Member Posts: 68
    edited September 2018
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    EZRunner - I echo what Beeline said in regards to Claritin

  • wanderweg
    wanderweg Member Posts: 487
    edited September 2018
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    This forum is so helpful to me, to have people who are going through what I'm going through. Even though everyone's journey is different, it helps to be able to hear about what the possibilities are and have the support. So thanks, all!

    I'm starting day 4, with nothing more serious yet than mild stomach cramps and tiredness. I'll admit that when I woke up after a pretty good night's sleep, my husband went off for a bike ride and I just went back to sleep for a while. I've taken regular claritin daily for years so I had a little fear that I'm habituated to it so I'm doubling the dose for the first few days of the neulasta. No bone pain yet. I'd like to be moving more but I had a surgical complication last month that left me with pretty bad neuropathy in one foot and can't walk more than about a block without serious pain. I'm guessing it will require another surgery to fix once the chemo is behind me.

    Anybody here have a port? Mine is still so sore at the incision sites. I am thinking I might wear something soft like a silk scarf over it when I go back to work Friday so it would be so obvious.

    @JNKK - let us know how your first round today goes!

  • Bostoniangal25
    Bostoniangal25 Member Posts: 177
    edited September 2018
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    Hi Tigerlily, I m 1 month ahead on TC at MGH Danvers and decided to stop by and say Hello!

    I’m doing Paxman cooling caps as well, but after second infusion on 29 of August my hair matted on a sides 👀using oils and conditions to moisturize..

    Tigerlily I hope you live closer to the North shore ?! I wish we could go together we had infusion on the same dates! If you have any questions or maybe would like to meet one day- pm me !!!

    If you have any questions please don’t hesitate.

    Ladies , Claritin- 24 hours Loratadine for bone pain.

    Mine Neulasta on pro patch was on the stomach and no issues but I was afraid to sleep ... but I think it less painful that shot - just keep it on stomach though less drama!

    Good luck and less se , girls!!!

  • pcranky
    pcranky Member Posts: 81
    edited September 2018
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    EZ Runner and Beeline - My brother biked 20 miles a day for the first 15 of his 18 weeks of chemo. His was for lymphoma so it was a different cocktail but doxorubicin was one of them so there was that in common. He said it wasn't easy but he was able to keep that and yoga up until almost the end of treatment by which time he was just too tired, so you may find you can run - everyone is different.

    I'm sorry i'm not in better shape before starting, it seems daunting to increase physical exercise during this time but on the other hand If I do try to up the exercise i can blame whatever aches and pains i have from being horribly out of shape on chemo :)

    EZRunner - I do water exercise and swimming and I have to say its so good for everything - mental, physical, water retention (i am hoping it will help with steroid bloat. I recommend it highly, its like getting a massage while you exercise.