Chemo in July 2015

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  • Flaime
    Flaime Member Posts: 18
    edited July 2015

    During the worst of my SE's after my 1st round I was shaky most of the time while I was up trying to do anything. Mine wasn't just after eating, but was pretty much all the time, and got better by the 4th day.


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  • courtleboo
    courtleboo Member Posts: 72
    edited July 2015

    Thanks Flaime... It seems that I am much shakier this time than last. I guess each time will be a little different. I hope it subsides soon.

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  • TizzyLish
    TizzyLish Member Posts: 41
    edited July 2015

    Hi ladies! This is my first post in the forums. As you can see from my signature, I was diagnosed in early May, had a bilateral mastectomy at the end of May, and started chemo on July 8th. I'm getting TCHP every three weeks for six cycles, then continuing with Herceptin every three weeks for a year.

    My SEs from the first round of chemo were mainly fatigue and queasiness. Eating was sooo hard. Ugh. Oh, and my mouth got really tender, but I only had a couple of very small sores.

    My hair started coming out in clumps on Day 15, so my dear husband shaved it for me last Friday. I thought it would be really upsetting, but the hair was making such a mess that it's a bit of a relief!

    Anyway, I'm so glad to find this group!

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  • 6feetover
    6feetover Member Posts: 320
    edited July 2015

    TizzyLish: Sad you have to be here, but glad you're with us!

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  • Want2Bcamping
    Want2Bcamping Member Posts: 62
    edited July 2015

    Welcome TizzyLish

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  • Moderators
    Moderators Member Posts: 25,912
    edited July 2015

    Welcome TizzyLish, and we agree with the others: Sad you are here, but happy you found us. Please keep us all posted!

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  • powerthruit
    powerthruit Member Posts: 59
    edited July 2015
    courtleboo - now that you mention it, I noticed it a teeny bit after infusion 1. Number 2 is tomorrow. I'll let you know.
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  • pavlovsbell
    pavlovsbell Member Posts: 34
    edited July 2015

    Hello all!

    After much, much discussion, my treatment team finally decided that I will get my port placed on Wednesday and then start chemo on Thursday, so that officially makes me part of the July group (barely!) I will have 4 rounds of AC and 4 rounds of Taxol. My husband and I went to the chemo teaching on Friday and were surprised that the nurse teaching us painted a different picture than my oncologist. My doctor alluded that "most folks do extremely well with this regimen"....great! we thought, then the nurse was more like "please do yourself a favor and take your nausea meds around the clock"....um, okay. So, I'm feeling a bit anxious, naturally. I don't feel prepared. Not sure I know where our thermometer is, much less what type of head coverings I should be anticipating. I'm going to spend some time tonight reading through many of the July posts and hope to draw from your experiences.

    Jessica

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  • hartrish
    hartrish Member Posts: 380
    edited July 2015

    welcome pavlosbell. The board will provide lots of information. Everything seems to move so fast at first with lots of information coming at you.

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  • mama26
    mama26 Member Posts: 40
    edited July 2015

    powerthruit- Thanks, I will try that. No movement with the miralax.

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  • Thunder7
    Thunder7 Member Posts: 73
    edited July 2015

    Batesburg, you look really cute!

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  • RuthElizabeth
    RuthElizabeth Member Posts: 103
    edited July 2015

    Morning everyone. Melinday, I have taken the biotene since day one as a precaution. So far so good. I leave in an hour for chemo #2. A little nervous. Not sure what changes they are making. I just hope they help. I think I'm more worried about getting an IV places. My hand is still all black and blue from Friday. But I have drank so much I feel like floating. So I hope that helps. Good luck everyone !!!

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  • melinda531
    melinda531 Member Posts: 27
    edited July 2015

    JillyB - LOVE the pic!!! What a great support group you have!!!

    Bjsmiller and RuthElizabeth - thanks for the tips on the rinses! I'm sure part of my issue is the chemo but I'm still on some antibiotics from the colitis that say they could alter my taste too so I may have a bit of a double whammy going on!

    Good luck to all of us having our second treatments this week! Mine is Thursday and I'm hoping to not land in the hospital this time.....figure if I set a low expectation like that then maybe I'll feel better about anything short of it happening! Happy

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  • Thunder7
    Thunder7 Member Posts: 73
    edited July 2015

    Melinda, you look gorgeous!

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  • Thunder7
    Thunder7 Member Posts: 73
    edited July 2015

    Melinda, you look gorgeous!

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  • Gretagirl
    Gretagirl Member Posts: 182
    edited July 2015

    I used (As directed my onc nurse) mag citrate! I will never use again! Three days out from that stuff and still have issues. I will be trying Mira lax for next chemo round. My mouth had no sores but I felt burnt and my throat was sore all weekend. Feels a little better this morning.

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  • Gretagirl
    Gretagirl Member Posts: 182
    edited July 2015

    Peabrain hang in there girl it will get better!

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  • Gretagirl
    Gretagirl Member Posts: 182
    edited July 2015

    Flaime I am with you stay ahead of it! Lessons learned. I really wonder if I am ever going to be normal,again!

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  • Gretagirl
    Gretagirl Member Posts: 182
    edited July 2015

    For all those going on to next round of chemo today I hope all goes well for each of you! There are so many of us I can't keep up so I try to reply as I read along. I feel pretty good today except for stomach and my mouth is finally starting to settle down some from that burnt feeling. Throat still sore though. Have a wonderful day all!

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  • chefryancallahan
    chefryancallahan Member Posts: 2
    edited July 2015

    Hi All!

    I was my mom's caregiver when she went through chemo treatments. She was diagnosed with HER 2+ breast cancer. I am a Chef and I just wrote a book called, "Cooking for Chemo ...and After!" cookingforchemo.org (if you want more info) She had the typical chemo side effects of loss of appetite, metallic tastes, smell and other taste changes. I teach in my book how to adjust your cooking to accommodate for these changes. I wanted to share some cooking quick tips that may help you as you are going through chemo as well.

    Also... if anyone in this discussion has any specific questions about cooking for chemotherapy, I would be more than happy to answer them. I just want to share what I have learned (from a chef's perspective) to help others. :)

    Hope this helps someone today!

    -Chef Ryan :)

    Cooking Tip #1:Hydration: Ingest lots of fluids! Dehydration is no joke! Water regulates many functions of your body including digestion, muscle movement, and taste. There are many ways to get water into your body: sports drinks, soup, vegetables, fruits, food in general, or even drinking plain old water.

    Cooking Tip #2: Roundness of Flavor: In short, this is the key to cooking for people going through chemotherapy. Roundness of Flavor is a culinary theory that encompasses every aspect of the actual tasting experience. When you eat food, you experience food with all of your senses not just your mouth. Roundness of Flavor teaches you to find all five flavors (salty, savory, spicy, sour and sweet) and experiences (touch, taste, smell, sight, and hearing) and bring them into balance. When your sense of taste and smell come out of balance, you have to find which aspect of the sense has come out of balance and compensate to bring balance to your body. For example, if you are extra salt sensitive during chemo you will reduce the salt content of a meal, but increase the savory or spicy characteristics to bring balance to your dish. The cheat sheet below is a good go-to guide when you are cooking. Simply taste your dish, evaluate what it is missing and season in order with the suggested ingredients to bring your food to life. The why and how of this topic is covered in much greater detail in my book Cooking for Chemo… and After!

    Cooking Tip #3: Palate Cleansing: Palate Cleansing is a technique where you utilize a subtle and almost imperceptible sour note in your cooking to create the illusion of lightness inside of a dish. Palate Cleansing is important because as you progress through chemotherapy and the side-effects become stronger, you can develop a very strong metallic taste in your mouth and sometimes even lose the ability to taste anything but metal. Palate Cleansing is a fantastic technique for waking up those taste buds and clearing out that metallic taste from your mouth. Palate Cleansing is also a great way to make heavier foods feel light in your mouth allowing you to eat more nutrient dense dishes without feeling ill or disgusted while you eat them. Simply add 1-2 tablespoons of red wine vinegar to your meal. Sour flavors should always be followed by a bit of sugar to mask the actual sour flavor. Great food items for Palate Cleansing include: Vinegars, Citrus Fruits, Parsley, Cilantro, and so much more!

    Cooking Tip #4: Sanitation: You have to keep your kitchen and your home clean! Chemotherapy kills your auto-immune system and a dirty home is the fastest way to other illnesses like food poisoning. You want to make certain to sterilize every counter, kitchen surface, cooking surfaces, and even your refrigerator with a disinfectant like a bleach and water solution.

    Roundness of Flavor Cheat Sheet: How to correct flavor when cooking a dish

    Problem:

    Solution:

    Dish is bland/not savory

    add salt and MSG

    Dish has no heat

    add red pepper or cayenne

    Dish is too spicy

    add vinegar

    Dish feels heavy in my mouth

    add vinegar for a palate cleanser

    Dish is bitter/sour

    add sugar (remember: sugar follows vinegar)

    Dish is too sweet

    add vinegar

    Dish has no pizzazz/aromatic quality

    add more herbs or spices

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  • inkster
    inkster Member Posts: 93
    edited July 2015

    Thanks for the tips, chefryancallahan! The wonky taste buds coupled with loss of appetite and queasiness have made eating healthy food a trick. Definitely hanging on to this info as I head into round 2 and beyond.

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  • Flaime
    Flaime Member Posts: 18
    edited July 2015

    Thanks for the tips, chefryancallahan! I think altered taste is going to be the most lasting SE that I'll be dealing with until I'm done with chemo.


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  • Batesburg
    Batesburg Member Posts: 199
    edited July 2015

    Hey all- agree w Gretagirl- hope everyone is well. Got my port today. It is definitely sore now that the lidocaine has worn off. :( Cannot use for tomorrow's chemo- have to keep it covered for 48 hours. BEST news EVER- my platelets are 165!!! (they were 56 last week). That carboplatin is really hard on the bone marrow but apparently taxol not so much. Now hope the neupogen did its job and my ANC is at decent level so I can get carbo again tomorrow. (kinda weird to WANT a chemo drug, but, I know you all understand - GO HARD now for better long term outcomes. :)

    I kind of wish this board was more like FB- so I could like posts, keep track better. :)

    Prayers for each and every one of you.

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  • Queen_Celeste
    Queen_Celeste Member Posts: 68
    edited July 2015


    Batesburg, my port hurt a lot the first two days, but since then (May) it hasn't hurt at all.  I don't think I took anything for it.  Since then it is just a hard lump right under the skin but nothing more than annoying.  Hope yours is better soon!

    (Just had my 4th chemo session last Friday.)

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  • 6feetover
    6feetover Member Posts: 320
    edited July 2015

    inkster: Same here. I feel queasy just thinking about the garbage I've eaten today (i.e., fat and salt, mostly) because nothing healthy seems palatable. I feel like I'm getting scurvy! Fresh fruits and veg are wholly unappealing right now, but they're really what I need most. Urff.

    Anyone else bloated, retaining water, or experiencing peripheral edema due to the steroids? This is gross!

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  • 6feetover
    6feetover Member Posts: 320
    edited July 2015

    ChefRyan: Thanks for the excellent tips–gonna pass 'em along to my DH who loves to cook but who's really frustrated right now, as you might imagine!

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  • FreeandFlying
    FreeandFlying Member Posts: 47
    edited July 2015

    How is everyone's hair? It is day 19 post first AC and I still have hair. Had it shaved yesterday (#2) because I kept feeling it and hair was coming out. With it shaved I don't notice anything coming out. Does all the hair eventually fall out? If it stays the way it is I will be fine not wearing a wig or scarves, even to work.

    Ps because my diagnosis was at age 40, genetics testing was covered. Recieved results today- I don't carry any mutations in bc related genes. Great relief just wish I wasn't feeling so weak and tired still from chemo 2 last thurs

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  • 6feetover
    6feetover Member Posts: 320
    edited July 2015

    FreeandFlying: I shaved my head over a week before my first chemo, because I knew that I wouldn't be able to handle seeing it come out in clumps. For me, it's day 21 since my first round, and I finally noticed loads of the Sinead-y stubble coming out when I washed my noggin' today. Newp!!! Didn't wanna see that patchy look, so I clenched my teeth and shaved it to the scalp this afternoon. Got really queasy watching myself do it, too...makes it more "real," I guess, than simply looking like a ballsy/confident woman. You know what I mean? This isn't "punk rock" anymore, etc. *Sigh*

    Ah, well, just call me Kojakie...

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  • Peabrain
    Peabrain Member Posts: 268
    edited July 2015

    Thanks for the support, gang!

    Today's big outing was to the oncologist who verified that I am more nauseous than the average bear. This achievement does not earn a bumper sticker, but I did get a trip to the treatment center for hydration and Kytril. But that's not all! I also got a trip to the chair! Yes, clearance for next week's chemo treatment based on my unexceptional blood work. (Boy did we kill off the white blood cells, but I still have platelets!)

    I hear you, Batesburg, on wanting the chemo. It's the only weapon we've got against these triple negative suckers.

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  • mdoc524
    mdoc524 Member Posts: 336
    edited July 2015

    Welcome Welcome JbandKb1, TizzyLish and pavlovsbell - so sorry you have to be here but glad you found us - really great group of strong women here!!

    pavlovsbell - seems like you have not been given too much time to plan .. definitely agree for you to read thru the posts here - I would also suggest going back to a previous month's chemo board like March as well.. As far as planningfr Head Coverings - there is another Topic called "More Tips (and a Shopping List) for getting thru Chemo" under this same forum Chemotherapy Before, During and After. There you will find posts with suggested website on Headcoverings .. I purchased a few at headcovers.com. I have not used them yet as I also start my treatment (AC + T) this week .. I do not plan to use a wig .. Good Luck

    TizzyLish - thanks for sharing how your first treatment went and what you experienced.. Hope Round 2 goes well

    Batesburg - Love Love Love your wig - looks so natural - you are Beautiful! As far as your port ?? - I did not have a choice and actually got my port installed today - not sure if you have yours by now or not .. I prefer port even though really sore right now and feels like I have a sore throat - hoping that is normal.

    Want2BCamping, powerthruit and melinda531 - beautiful pics = beautiful strong ladies - thanks for sharing

    JillyB - the pic of your Shave Party is awesome - my husband's sister is coming with me to Salon on Thursday to cut our hair as short as possible - I have long very thick hair and don't want to deal with the anxiety of seeing it fall out while long .. I am lucky to have someone do it with me .. your friends are just awesome...

    So I am preparing to start my 1st Chemo Round this Friday the 31st - have been with all of you since Michele opened the forum and I feel so fortunate to learn from all of you on how to best manage thru this. My husband keeps telling me to stop reading your posts as some of the se's and trips to the hospital make me nervous about what will I expect for my own se's .. First thank you all for continuing to share and I have been cheering on as I get ready to jump into this game that we will all WIN! I know it!

    For those still suffering thru se's (Ruth, Peabrain, Yoxter123, dchavy, melinda531, mama26, mandrew, courtleboo, darkadaptedi, faime, Want2BCamping, powerthruit, Michele, hartrish, Inkster, Bjsmiller, Zuwali, JillyB, Free_and_flying, sher0402) and everyone else I might have neglected to mention or that might be silently dealing with se's -- hang tough - we will get thru it - find the one thing that is your strength and hang on to it!

    For those that are having big issues with constipation - I suffer with that normally and here is a tip .. stay ahead of it - I take dulcolax tablets - they work and the one fruit that works for me is Cantaloupe - might be hard to eat/taste but wanted to share .. I plan on having both on hand for Day 1

    chefryancallahn - thanks so so much for your Cooking for chemo Tips - really appreciate it and will try them

    Lastly - who shared the specifics on the Baking Soda/Salt Combo Mouth Rinse - Hartrish was that you? I have seen that asked a few times recently and was hoping whoever shared it could repost what the measurements are that are used to make the rinse and how often, etc ?? Thanks

    For those starting this week (me included) & the rest who may be starting 2nd or 3rd rounds - game on - best wishes - we got this!

    Stay Strong!

    Mary


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