Starting chemo July 2018

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  • RoseRed4
    RoseRed4 Member Posts: 72
    edited July 2018

    Thanks ColoradoHolly. My treadmill is my stress reliever. Used to hate the thing, now I love how working out on it makes me feel. It’s one of the main things that has helped keep me sane through these past few months. I’ve heard also how important exercise is while going through chemo, so that makes me even more determined to keep up with it.

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  • JaBoo
    JaBoo Member Posts: 520
    edited July 2018

    ladies, count me in with exercise through chemo! I'm not a runner or gym lover (in fact, I've never been in one), but I'm a hiking-lover and gardener (big garden) and I do joga. I hope to be able to tend to my beloved garden and go for walks and continue with joga. btw - do smallish kids count as a kind of excercise? 🙂

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  • RoseRed4
    RoseRed4 Member Posts: 72
    edited July 2018

    I'm a sun lover, always have been. It's one of my ways of relaxing after work. Just an hour here and there. My boyfriend tells me I have to stay out of the sun completely while on chemo. Is this true? I will be asking my doctor about this too. I will do whatever my doc tells me, but no sun for the rest of the summer will be depressing for me 🙁

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  • Fixyourdog
    Fixyourdog Member Posts: 26
    edited July 2018

    Day 14 post chemo #1 (TC): scalp tingly and hair is slowly starting to go. And I was just getting to like my pixie cut and had stopped missing my ponytail. A rite of passage in Chemo World.

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  • Cria
    Cria Member Posts: 31
    edited July 2018

    Well, apparently my follicles weren't growing as fast as they'd like, so egg harvest tomorrow instead of today (at least if this works my embryos won't be conceived on Friday the 13th

    )

    Chemo starting Monday, quite a group starting Monday! working on getting Penguin cold caps. About to head to Costco to pick up all my drugs and some B6 and some Glutamine, which I've heard can help protect against the neuropathy from taxol.


    Stay strong ladies!

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  • Ingerp
    Ingerp Member Posts: 2,624
    edited July 2018

    Colorado—I have definitely cut back on my gym time the last few weeks. I think dragging myself there when I really don’t feel like it is not a good idea. I’m probably going 2-3 days a week vs. every day like I was. I’ll increase that when I finish chemo. I know this is temporary and I do think my body is telling me when it needs to rest

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  • JaBoo
    JaBoo Member Posts: 520
    edited July 2018

    RoseRed - yes, I think sun should be avoided during chemo... in one of the previous monthly groups (sorry idk which one), I've read that one lady got a red sunburn and was surprised... somebody told her it's ecpected during chemo. I've made a mental note regarding sun protection when I saw this

    Cria, big hug and wish you luck tomorrow for the harvesting!

    Cria has mentioned some B6 and something else - and I wanted to ask everybody here: Do you plan to take any vitamins or anything special during chemo?? Have you maybe asked you MO and got some recommendations?... I have asked about Mg+B6 for the nerve endings and my MO confirmed that I may take it. I also plan to take some lactobacilus pills for the gut health and am considering Melatonin (which I've forgotten to ask about).

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  • Ebronson19
    Ebronson19 Member Posts: 17
    edited July 2018

    RoseRed, I had also read that chemo can make you more prone to sunburn but I assumed wearing sunscreen would be sufficient (which I try to do anyway). I will definitely ask my MO about it just to be sure. I agree a summer without being able to spend time outside would be depressing. I'm in Michigan so we already have shorter summers than most.

    I'm also in for exercise! I got back on my elliptical for the first time since surgery today - wahoo! I didn't work up a sweat (I usually go all out on one of the cardio settings) but it still felt like an accomplishment. I just keep reminding myself to take it one day at a time and rejoice in small victories.

    Cria - where did you hear/read about the glutamine helping with nerve pain? I thought I had read something on these forums but when I asked my MO about it she said it wouldn't help and I couldn't remember where I got the info.


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  • Jkittle
    Jkittle Member Posts: 24
    edited July 2018

    Hi there gals!

    I’m one week out from my first AC chemo. Feeling ok, a bit run down and achey but trying to take at least one walk daily outside, which seems to help. First two days after chemo were the worst so far, scalp is now definitely tingley. My brain scan was good, yay! Just waiting on my thyroid biopsy. I can’t wait to be done with biopsies. That last one sucked! My WBC count is down today so 3 more days of Granix shots at home. Only a bit of bone pain. I worked 4 days this week and had 5 doctor appointments too. Shaving my head bald tomorrow. No wigs for me, just hats or scarves.

    Hoping you all are doing better well and have lots of people who love you.

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  • Misha13
    Misha13 Member Posts: 240
    edited July 2018

    Hey ladies! I’m making my chemo shopping list and was definitely going to include B6. I’ve heard the glutomone and condroiton(sp?) takes like weeks to work on joint pain, so I don’t know if I should try.

    I’m also going to get my medical marijuana card. I know that’s a different forum, but since were talking about supplements...my cousin has hers and brought me some gummies for Monday.

    Thank you FixYourDog and JKittle for posting about when you’ve lost your hair. I’ve been wondering what to expect.

    We’ve got this!!

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  • Ebronson19
    Ebronson19 Member Posts: 17
    edited July 2018

    Jkittle, congrats on the positive (or should I say negative? This crazy cancer world is so backwards!) results on the brain scan. Sending good thoughts for your last biopsy.


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  • ColoradoHolly
    ColoradoHolly Member Posts: 14
    edited July 2018

    Just reporting in with an update on my experience with the first round of TCHP. Yesterday (Day 4) was my worst day so far. I slept in until past noon and was headachy and just generally out of it for most of the day, although I did run errands and take the dog for a walk by the end of the day. Food also tasted off, although I still have a good appetite. Today, I woke up feeling similarly blah but managed to rally and get out of bed. I definitely feel better today than yesterday and plan on getting outside. I am anxious to see how the remainder of my first cycle will go.

    Question for everyone - is anyone else experiencing acne as a result of the steroids given in conjunction with chemo (just my guess as to the cause)? I had clear skin prior to BC, went off of the birth control pill once I was diagnosed with BC and my skin remained clear. Starting about two days ago my chin and now the remainder of my face is breaking out in big whiteheads (gross)! Definitely doesn't look like any sort of acne i've had before. I'm wondering if I should report this to my MO.

    I hope everyone is feeling well and enjoying their weekend!

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  • RoseRed4
    RoseRed4 Member Posts: 72
    edited July 2018

    I've been home about 2 hours since my infusion this morning. Everything went well. Got my Neulasta On-body Injector on my arm. Take it off in 24 hours. I already take Claritin. Have for years, so yay for that. I had felt very emotional over the weekend, so was hoping I'd keep it together today and I did 👍 I was very calm through it all and honestly I could've driven myself today. Wasn't drowsy at all. Took my first Zofran 2 hours ago. Slight headache and tummy then felt weird like I needed to eat something, cottage cheese helped. Gonna take it easy the rest of the day and drink lots of water. No treadmill today. 4 miles on it yesterday though 😋 Starting to feel kinda tired, so I'm gonna lay down. Hope everyone is doing well

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  • Jkittle
    Jkittle Member Posts: 24
    edited July 2018

    Hi gals!


    I have a new Side Effect I noticed on Saturday. I've always had a very strong sense of smell and apparently now that's my super power. One dead crab on the beach smelled like truckload of rotten crabs. Then I could still smell it from just thinking about it hours later. Disgusting. The funny thing is I never saw the dead crab. I smelled it from a good 100 feet away and someone confirmed there was one dead crab nearby. I felt crazy! Haha.

    Hope you all are feeling ok and getting through your day with a smile.

    Jenny

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  • Misha13
    Misha13 Member Posts: 240
    edited July 2018

    Ugh. I have also been home for about two hours. I feel sleepy and loopy. My Neulasta is on my belly because I’m a side sleeper.

    Rose glad you did well; JKittle, yuck I’m sorry you are having that side effect.

    I just ate a THC gummy so I’ll see what that does. I can feel the stomach acid creeping up, so I ate nut thins and peanut butter. Hopefully this doesn’t get much worse!


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  • RoseRed4
    RoseRed4 Member Posts: 72
    edited July 2018

    Thanks Misha13. Hope you're feeling better now.

    Whew, I wrote my last post about a hour before the nausea hit me, but it passed and I was able to eat a sdinner. Dealing with my menopause hot flashes also, which seem worse lately. I guess that’s normal with extra stress right now. Hope I’ll feel good enough to go on the treadmill tomorrow.

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  • ColoradoHolly
    ColoradoHolly Member Posts: 14
    edited July 2018

    Misha - I live in Colorado and have been using marijuana with some success, particularly for body aches, sleeping and appetite. I found a 1:1 THC/CBD tincture by Mary's Medicinals that I really like.

    Still feeling a little cruddy today (day 7) but improving daily. I saw my MO today to talk about the bone pain caused by Neulasta. It hit me pretty hard, and she said that for us that do get the bone pain SE, it is typically worst the first time around. So, fingers crossed!

    Sending good healing vibes to all of you!!

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  • JaBoo
    JaBoo Member Posts: 520
    edited July 2018

    Morning after my 1st infusion... I slept like 10 hours with just two loo visits. I wonder what today brings.

    Yesterday I almost felt like holding on to the door frame of my house and crying. Well, but it passed (I didn't do that 😀)

    The infusions were really uneventful, apart from one loud lady on the telephone, which was annoyng.

    I came home and slept and woke up hungry and then the nausea hit me hard, with trembling all over. I took the anti-nausea pill I got prescribed and luckily it passed quickly and I ate light dinner and later even ate some blueberries from my garden. Being outside really helps, spent the whole afternoon walking between a reclining chair outside and the kitchen

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  • Cria
    Cria Member Posts: 31
    edited July 2018

    Glad to hear you're feeling better JaBoo! The advice on the B6 came from the oncology PA. The Glutamine (NOT Glucosamine) I heard about from my firefly sister (a survivor who I was matched with through a local program called the firefly sisterhood that matches women dealing with breast cancer with a survivor with similar disease/lifestyle factors). She said it seemed to help. She said the powder was better as you had to take too many pills to get the proper dose.

    Had my egg harvest on Saturday, they got SIX! eggs! Two were mature, 4 immature, one of the mature ones fertilized, the other didn't. One of the immature ones matured overnight and was inseminated and fertilized. The other three eggs didn't mature, so no go. I'll next hear on Thursday if the fertilized eggs are growing the way they are supposed to. Fingers crossed!

    I had my first infusion of paclitaxel yesterday. Day started out shitty with a fight with my mom (I'm sure there are more to come), along with getting stung by two wasps in the middle of the fight and trying to get going to the clinic. Luckily, I don't seem to be allergic to paper wasps the way I am to yellow jackets.

    I'm doing cold capping with Penguin Cold Caps, so had to pick up dry ice before chemo, figure out how to layer the caps in the cooler with the dry ice, how long it takes to get them to the right temperature and everything else. The local Penguin rep/consultant says to drink 16 oz every hour while doing the capping, so I was peeing more than I have ever peed in my life! The capping definitely makes the day longer and more stressful, but we'll see how it goes. I'm thinking I should buy one of the machines that circulates the cold fluid through the cap and start a business bringing the machine to the different infusion centers in the area for a fee for patients who are interested.

    Got pretreated with Benadryl (good for the wasp stings!), 20 of dexamethasone and Pepcid. Didn't have any reaction to the paclitaxal (Yay!) so pretreat again next monday, and if that goes without issue, will be able to wean off of some of those. I also pretreated with oral zofran (odansetron) and a scopalomine patch before I got there. I haven't had any nausea yet. Slept great, other than having to get up and pee.

    Leaving for Vermont to work for 2 weeks on Thursday, so tons of stuff to get done before then.


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  • JaBoo
    JaBoo Member Posts: 520
    edited July 2018

    cria, thats wonderful with the eggs, I think its more than you were hoping for, isn't it!

    concerning glutamine I've found a thread here, with many recommendations, however on page 2 there are also some opposing links. I'm not so sure now...

    https://community.breastcancer.org/forum/86/topics/586074?page=2#idx_35

    I also dropped the fish oil around the days of infusions, but I will take it afterwards...

    day #2 after my 1st AC was OK! tired and slept for 3 hours in the afternoon, but nothing else. not even a nausea pill. tomorrow I'm gettin Filgrastin injection, so I'm gonna try Claritin against the bone pain

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  • Misha13
    Misha13 Member Posts: 240
    edited July 2018

    So 3 days out from first infusion. I don’t know what to think of this stuff.

    The meds and side effects are a lot.

    Cria-hope your eggs are doing well!

    JBoo-hold on to the door frame and cry all you need.

    Anyone doing ac know or can tell me how long this shitty feeling is going to last or is this just the way it will be now??

    Trying to stay positive and comfortable. Hope you all are doing well!

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  • RoseRed4
    RoseRed4 Member Posts: 72
    edited July 2018

    Still haven't made it on the treadmill, but I was able to get some things done around the house before leaving for work this morning. This is my first full day of work since Monday's infusion. Yesterday worked half a day. I feel kinda weak, but getting my work done ok. Just going a little slower than my normal full blast mode. Lol I'm a housekeeper, so I definitely get some exercise with my work too. Other than some extra burping, I'm not really having much stomach problems. Last night I had a small chicken salad for dinner, with one of my home grown tomatoes and it tasted so good! 😊 First meal I really enjoyed since Monday's infusion. I hope everyone else is doing good today.

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  • Leatherette
    Leatherette Member Posts: 448
    edited July 2018

    Coloradoholly,

    I had TCH, started last July, and I got bad acne my first round, but not again.

    I took glutamine, and I think it helped with neuropathy. I finished chemo in November, have a thick head of curly hair, feel good, and am recovering from recon surgery. You all can do this! My chemo thread was my lifeline during that trying time.


    Best to you all,

    L



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  • bobby77056
    bobby77056 Member Posts: 28
    edited July 2018

    Misha13; it gets better, I promise! listen to your body, rest and take plenty of liquids. Are you allowed to take Aleve, Claritin and/or Benadryl? If so, please do. Aleve muscle pain helped me tremendously. Drink sparkling water for nausea, and try not to take the px meds, if you can. Just keep telling yourself, "this shall pass". and it does, I promise! Sending peace and comfort your way! I am sorry you feel this way...

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  • Dawn117
    Dawn117 Member Posts: 6
    edited July 2018

    Howdy y'all. I'm starting TCHP on Wednesday. I'm pretty anxious so I thought I would reach out to others that are walking this journey.

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  • JaBoo
    JaBoo Member Posts: 520
    edited July 2018

    Mischa13 - - hold on, it gets better! I felt almost normal on Thursday (AC infusion Monday, same as you). I ran some errands in town and in the afternoon even went for a hike into the woods with DH - no paths, we like to walk freely through various terrain. sorry my weird Engl. My stomach a little queasy, a little dizzy and a slight headache - but given the situation I was happy with how I felt.

    RoseRed - - I think with your job you have enough exercise! At least the first days after infusion, don't you think? I was just thinking whether keeping our house from being blown to pieces by my small kids counts as a kind of exercise...

    Dawn117 - of course, welcome here...

    😁 But a major catastrophy for me - sweets taste wrong, even Mozart Kugeln are not good! I don't know how I'm going to maintain my weight through chemo without sweets.... (BMI 19 here, unintentional)

    concerning antihistamines - I noticed a lot of ladies here are taking them (Claritine, Benadryl too) - how do they help? Can somebody please clarify?




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  • Nick87
    Nick87 Member Posts: 2
    edited July 2018

    are liver ultrasound routine before starting Chemo? Or is it something to be concerned about

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  • JaBoo
    JaBoo Member Posts: 520
    edited July 2018

    Nick87 - it's standard procedure, at least where I live - I got whole body bone scan(scintigraphy) , belly ultrasound, lung x-ray and today I went for my heart check (baseline before Herceptin starts). I think the MO said there will be a brain scan prior to Herceptin too. I live in Europe

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  • RoseRed4
    RoseRed4 Member Posts: 72
    edited July 2018

    I think you’re right, JaBoo concerning exercise for me right now. Keeping up with my own housework and my work schedule is proving challenging enough. This is definitely a learning experience (trying to be positive) TGIF!

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  • Misha13
    Misha13 Member Posts: 240
    edited July 2018

    Aahhh ladies I posted this long response yesterday and cyberspace stole it!

    I do feel better today-Friday, I’m actually in the car waiting to pick up my 17 year old from her friends’ house.

    I took The Claritin and had little bone pain, but I have some mild arthritis in my back that hurts me anyway...

    Welcome Dawn! You’re in good company.

    Nick, I had a pet scan where they did check out my liver too. I have hemangioma on my liver, and they had a previous scan to compare it to. I’m sure your scan will be nothing too!


    Post more later! Glad to be feeling better and to hear others are too.

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