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Starting Chemo October 2021

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Hello all,

I am starting chemo on October 6th and thought I'd start a discussion thread for others who may be in the same boat. I am doing dose dense AC followed by weekly taxol. I'm still trying to get used to the idea that I actually have cancer, so chemo is still very much a word more than a reality, but I am trying my best to prepare for it even though 20% of my brain still thinks this entire thing is a very realistic game of sadistic make-believe. I'm 42, physically fit, and have no history of any health problems whatsoever, so this one really came out of left field. The mastectomy wasn't nearly as bad as I thought it would be, though, so I'm sure hoping chemo will also be less terrifying than it is in my head.

To get the ball rolling, my top question is whether anyone else is considering acupuncture to control the nausea. I've consulted with two oncologists and one seems to think it's very effective and can help you avoid having to take the anti-nausea meds, while the other thinks it can be helpful but is no substitute for the meds, which she says I'll still need to take anyway. Any thoughts on this?

2nd question. The dietary guidelines the oncologists are giving me are sending my head spinning. Sugar free, gluten free, no poultry, eggs, soy, dairy, or processed foods. Well, that eliminates about 60% of what I eat and 90% of what I actually like to eat, so.... Trying to think of recipes. Anybody have anything they particularly like that includes basically nothing besides plant proteins, fish, vegetables, and fruit? My first attempt at this is to overhaul breakfast since chicken-apple sausage and eggs or fruit crepes and chai lattes were our breakfast staples, all of which fall into the "inflammatory foods" category. Here's what I've come up with that I find reasonably satisfying for a regular morning meal.

Steel cut oats (need to make it the night before to make it practical, but it's easy to cook up in a big pot and lasts for a few days)

Mix in some oat milk (which is naturally sweet with just oats and water, no added sugar necessary) and heat in the microwave for a minute or so.

Throw in some berries (antioxidants) and any other fruits you like.

Add some walnuts

Spice it up with cinnamon and nutmeg.

This takes me about 10 minutes in the morning to make and my teenagers will happily join me for breakfast. The oat milk makes it a little creamy and adds some sweetness to it, so nobody has even whined about the lack of honey that previously played a large role in our family's attempts at oatmeal.

Sending healing thoughts to all of those out there who may be on this path with me.

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  • Sadiehen
    Sadiehen Member Posts: 1
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    Hello!

    I will also be starting chemo in October, but I do not have my first session scheduled, yet. My port placement is next Wednesday, so I am hoping the chemo starts the week after that.

    I'm still in shock mode from my diagnosis. I just turned 41 (birthday present was a chemo diagnosis :P) and I am starting with chemo rather than surgery. I have three young children ages 5, 9, and 11. I'm also fortunate to have an amazing and supportive spouse.

    Anyway, I have not considered acupuncture, nor has my doctor mentioned it. Maybe I will being it up during my consultation with the oncology nurses. I'm all for acupuncture, but I can't see myself using it as a sub for meds. I'm too anxious about feeling nauseous all day to take a chance on that - at least, that's what I'm feeling right now.

    Those dietary restrictions sounds really draconian! Red meat is allowed, but not chicken? No one has talked to me about that, yet, either, though. I would be totally into cutting out most sugars and processed foods and increasing veggies & fruit, but why all the other stuff? I don't think I could (or would want to) sustain that for 5 months. That being said, I am a fan of chia pudding for breakfast, which can be made with any kind of milk and berries.

    Thanks for starting the thread! I really appreciate the support right now.

    Sadie

  • moderators
    moderators Posts: 8,287
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    GRZ7279 and Sadiehen - Welcome to the BCO community, and thank you for starting this new topic. You are in good company here, and you can ask questions, share experiences, and support each other.

    You may find some helpful information on this topic: More Tips (and a Shopping List) for Getting Through Chemo

    We hope this helps. Let us know if there is anything we can do for you.

    The Mods

  • GRZ7279
    GRZ7279 Member Posts: 30
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    Hello Sadie,

    Wow, that's a lot to take on. My kids are 17, 15, and 13 year old twins. My role in their lives is mostly that of a consultant now, as they are pretty independent. This would have been logistically a lot harder when they were the age of your little ones. At that stage, they sucked up every ounce of energy I had and then some. I hope you are able to get some help. I'm so sorry you have to do this right now and hope we can support each other through it. What chemo are they going to give you?

    I don't know what my oncologist thinks of red meat, as it's never been a part of my diet to begin with, so we didn't discuss it. She told me that chicken and eggs are a problem because they are high in Omega-6, which is inflammatory and increases the risk of recurrence (as well as sugar, gluten, and processed foods.) I did find an article online that compared Omega 6 levels in various meats. Chicken and eggs are the worst. Turkey is a little better. Grass-fed beef is the best, but grain-fed beef is not good at all. You can improve eggs by buying Omega 3 eggs or pasture raised eggs. They tend to be both higher in Omega 3 and lower in Omega 6.

    As far as I can tell, all of the dietary stuff she gave me is lifelong, not just to get through chemo. The idea is to eat foods that help reduce the risk of recurrence and avoid stuff that increases that risk. Cooked mushrooms (particularly Asian varieties) are apparently a wonder food when it comes to cancer. They create proteins that can bind to cancer cells and mark them for destruction by the immune system. My stepmother told me she knows of a clinic in China that treats cancer solely by prescribing various types of mushrooms. Foods high in antioxidants, such as berries, are also good.

    I am really just at the beginning of all of this, so I'm trying replace one meal a week with stuff that she recommends and see how it goes. My stepmother is going to bring over a book she found on integrative oncology, which has multiple chapters about food and cancer. That's written by the woman who trained my oncologist, so I imagine it lays out the principles in a little more detail. I'll send you the name of it when I get it if you are interested.

    All the best!




  • Faith-over-fear
    Faith-over-fear Member Posts: 28
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    i found out today I will also begin chemo. October 7 is first date. I was diagnosed triple negative ilc

    Treatment plan is TC once every 3 weeks for 12 weeks. Scared, confused and reeling emotions. One moment I'm saying I can do this I'll be fine. 10 minutes later I can barely complete a sentence:) wishing everyone the best on this journey.

  • LizzyLizzy
    LizzyLizzy Member Posts: 8
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    This is my first post. I have my first chemo infusion scheduled for Monday, 10/4. I will have Taxol weekly plus Herceptin and Perjeta every 3 weeks for a total of 12 weeks. To say that I am nervous or scared is an understatement. The side effects sound awful and I am fighting to keep my anxiety and depression manageable. Thank you for listening.

  • Angel2003
    Angel2003 Member Posts: 1
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    Hi there. I'm starting TC treatment on October 7 as well. I started with a mastectomy on August 31. My cancer is E+, Her2-. I'm nervous as well but hoping for the best. Good luck to you.

  • Everythingispossible
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    Hi Everyone,

    I too will be starting chemo in October; yay?!?!

    Chemo is such a double edged sword; scared to have it scared to not have it! I am starting on October 11th. I'll have Adriamycin and Cytoxan (AC) dose dense for 8 weeks followed by Taxol (T) dose dense for 8 weeks. Once finished with Chemo I'll have radiation.

    My nutritionist total me to focus on "plant forward", low carbs, low fat diet moving forward with a hard "no" on red meat. She did also say that during chemo eating can be tough and be more focused on eating "something" if need be.

    Looking forward to sharing tips and tricks from this group to get through this!




  • moderators
    moderators Posts: 8,287
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    Welcome Everythingispossible, and glad you found this group, and we certainly hope we can be helpful.

    For Everyone in this topic, please consider joining us on Tuesdays for our weekly zoom meetup for people going through chemotherapy.

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    Join us for the discussion every Tuesday from 1-2pm ET. Register ahead of the meeting to receive access details via email the day of the meeting.

  • GRZ7279
    GRZ7279 Member Posts: 30
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    Hello all,

    Reading through everyone's introductions, it sounds like fear is something we're all dealing with. The worst part for me is just not knowing how my body will react. Some advice I read was to focus on dealing with what is rather than stressing yourself out with what might be. That seems like good advice, but hard to really do that when you are playing the waiting game. I pretty much feel the same way I did about the surgery. I want to start because I hate not knowing what I'm dealing with. At the same time, I am dreading it because you can't exactly look forward to suffering. Now that the surgery is behind me, I can say that dreading it was worse than dealing with it was when it happened. I sure hope chemo will be the same.

    I'm coping by trying to put my mental energy into preparing for things that are highly likely and controlling the things I can control. So I'm eating up (both literally and figuratively) the diet stuff because it's really challenging to do and it occupies my mind with something proactive. This week I learned how to make a lentil soup and how to make a version of tuna helper that's gluten-free, dairy-free, and sugar-free. I'm lucky because my mother-in-law lives with us so she and I have been bonding over how to make the food we enjoy in new ways. As long as I don't try to eat out, this anti-inflammatory stuff is actually making me feel great and I'm not hungry or suffering from cravings. The only struggle I'm having with it is loose stools from all the fiber, so still working on figuring that out.

    The other prep work I'm doing is trying to tackle hair loss. I cut off all my hair yesterday, so my teenagers could make all of their jokes when I still feel well enough to have a sense of humor about it. They said I am reminding them of all their trans friends and gave their dad a hard time about going on a date with his new boyfriend. In a lot of ways, I certainly do feel like breast cancer is robbing me of my femininity. It's already taken my breast, now my hair, and soon it will shut down my ovaries. My daughters really hate it because I just don't look like mom anymore. So, it's an opportunity to teach them that who we are really doesn't change just because our appearance does, which is not a bad lesson for 13 year old girls.

    Yesterday, I had the port placed and today I went hat shopping with my stepmother. The UCSF cancer center has a wonderful gift shop where all the proceeds go to fund cancer treatment and research. We had a lot of fun and I found some really cute stuff there, so the hair loss bit is feeling less scary because now I have all these adorable new hats to wear. Besides, I work in customer service and people can be really awful sometimes, so perhaps with my new cancer look they'll be slightly more compassionate and less likely to throw abuse my way, which would lower my stress levels substantially. Okay, that last one is probably just wishful thinking, but hey, trying to stay positive here.

  • Everythingispossible
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    Hi All

    I too have spent a lot of my "nervous energy" on preparing for the worst while hoping for the best. For example; I also bought hats and scarves and got a short haircut, I bought a few things for chemo side effects that I thought my shopping challenged but very loving husband might have trouble finding for chemo side effects. I'm such a "planner" and not being able to "plan" cancer has been tough but these things make me feel better. I figure whatever I don't use I can donate to someone who doesn't have the financial means to buy all this "stuff".

    I'm curious to find out how you all tackle side effect challenges as they come up. I've been reading the earlier months "chemo start" posts and have some ideas. The Admins repost earlier in this string was super helpful; had some of the things I had heard about and others I hadn't.

    Interesting how life is, my brother who lives in another state is the administrator of a cancer care clinic there; his best piece of advice to me is ask the Infusion nurses for their thoughts and advice. They see and spend a lot of time with patients and have heard what works. In addition, share how you are feeling; they can't help if they don't know. I'll have to remind myself on this one; I don't like to "complain"....

    GRZ7279

    I'm glad to hear your port placement went well and that you were feeling up to being out shopping a little bit. Mine is coming up next week and my Grandson's birthday is two days later and I'm hoping to feel up to some antics with he and his brothers!


  • Noodlesg
    Noodlesg Member Posts: 33
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    Hi everyone,

    I'm in my mid-40's and have the best husband and an 8 yr old child.

    I'm starting chemo on Oct 5. I'll be doing 12x wkly Taxol and then 4 x AC every 2 wks before surgery. I'm happy to share my experience once it starts. I mirror everyone's feeling on fear and anxiety. There have been many sleepless nights. Fear of the unknow is the worst! My onco prescribed lorazepam to calm me down and help with my first cycle.

    Thanks for reading and for your support!

  • oldladyblue
    oldladyblue Member Posts: 302
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    Hi all, I'm starting chemo 10/8, had my port placed yesterday. Was on the Sept thread, but didn't start in Sept, so joined in here. Worried, scared, trying to be hopeful that the future after treatment will be good. Will do radiation and hormone therapy after chemo. At least the do chemo?/don't do chemo?/ which chemo? indecision/decision flip-flopping is over now. Just waiting though is hard.

  • juju-mar
    juju-mar Member Posts: 200
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    hello ladies,

    I was in your shoes a year ago. My chemo was from Oct (A/C for 4x, Taxol x12) thru March 2021. Fear is normal, but the pre meds are really helpful. My biggest advice is to drink lots of fluids, rest when needed, but also walk or bike daily if you can. It's a good stress reliever and I read that exercise during treatment can help lessen side effects. It did for me. Steroids can play with your emotions and increase your appetite. Be kind to yourself and know you will get through this! I wrote a blog with my experience: jujuscancerjourney.Wordpress,com I'm happy to answer any questions, but everyone's experience is unique.

    Juli

  • Faith-over-fear
    Faith-over-fear Member Posts: 28
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    I have the same need to prepare, but yet can't be sure how to as everyone reacts to chemo differently. I start October 7. Was not able to get port scheduled ahead. Surgeon's schedule is ridiculously busy, so first infusion will be by vein. Everything seems like a challenge. Got scarves, hats, wigs and am trying hard to distract myself. Not easy as you all know. Praying and wishing everyone the best on the journey. Look forward to hearing from you all. Anyone have TC as chemo treatment plan? Any thoughts on Neurlasta?

  • oldladyblue
    oldladyblue Member Posts: 302
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    Juli - Thanks so much for popping in and giving some encouragement and advice. That makes me smile!

    Faith over - Yes, I'll be doing 4 infusions of TC.

    Everything - Good advice from your brother to ask the nurses, I bet they do have lots of good information

    Thanks to all who post here, it helps to not feel so alone.

  • gamzu710
    gamzu710 Member Posts: 203
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    I got a start date of 10/21, so joining this thread. Either TCHP or Taxol+Herceptin depending on the results of the lymph node biopsy this week. Obviously hoping for the second option but bracing myself. Everyone seems to think the nodes will be negative (my tumor was 6mm) but I'm so uncomfortable making any assumptions. Back in June we thought it was ADH and yet here I am.

  • Noodlesg
    Noodlesg Member Posts: 33
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    I just had my first round of Taxol today. No really bad side effects except fatigue (the doctors also gave me benadryl in case of allergy, which I was told caused the sleepiness). So, other than the pain from the needles (my port placement won't happen until next wk), it really wasn't that bad. Nurses said usually the nausea sets in day after though🤷♀️

    Anyway, I am happily surprised, I thought side effects would be worse. I came home to nap a bit, and will go out to kick a ball w my little one.


    I hope this helps to ease some anxiety for some of you who are set to commence treatment soon.

    All the best! We've got this!!!

  • moderators
    moderators Posts: 8,287
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    Just chiming in to let everyone know about this (every Tuesday, and you only register once)

    Hug TODAY: Zoom virtual meet-up for people going through chemotherapy (caregivers welcome)

    Tuesdays 1:00-2:00 PM Eastern Time (US and Canada)

    Register in advance for this meeting

    After registering, you will receive a confirmation email containing information about joining the meeting.

  • GRZ7279
    GRZ7279 Member Posts: 30
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    So glad to hear the first treatment wasn't that bad for you, Noodlesg. Fingers crossed that day 2 continues to be tolerable!

    I am officially finished with pre-chemo prep. I start tomorrow. The last step was a spa weekend with my sisters, which generated some stories that I thought might make you all laugh. I suppose I have to honestly thank cancer for this last weekend, as it's something I've never done before and both of my sisters had to play the cancer card to get the time off work.

    Unfortunately, my mastectomy swimsuit and sports prosthesis still haven't arrived yet, so I took my old bathing suit, which doesn't fit right at all anymore. After spending a morning fighting with the swimsuit, I finally decided that I don't care what a bunch of strangers that I will never see again think of my body and decided to go naked like everyone else in the hot springs. Now, that is something I never did before the mastectomy, so it was kind of a big deal to me. When I look in the mirror, the term Amazon Warrior Queen is what comes to mind. (Legend has it that the Amazon warriors would cut off a breast to facilitate archery). Between the long scar where my breast used to be on the right side, and the bumps and bruising on the left side where they placed the port, I've really been thinking I should go into acting because I certainly look like I've survived a battle in the Middle Ages. So, needless to say, when I decided to shed the clothes and rig a flotation device that would keep the port dry, I knew my upper torso would be incredibly exposed and figured that putting up with the stares would just be the price I had to pay for the freedom, comfort, and luxury of floating outside in warm water.

    What surprised me was the complete and utter lack of attention I received. One woman even walked up to us and chatted for about ten minutes without ever giving any sign whatsoever that she noticed anything remotely odd about my appearance. My sisters, who have spent much more time in these sorts of settings than I have, thought it's partially because social norms dictate that people give each other privacy by not looking. That makes sense to me because, while I saw a lot of naked men, I certainly didn't look closely enough to form any sort of opinion (even just in my own head) about the quality of their anatomy. The entire experience was rather healing regarding the whole body image issue of breast cancer. I really do believe that if God is sending me this challenge, there is something I'm supposed to learn from it. This weekend taught me to stop worrying about how the world will react to my missing body part. If they didn't care even when I was fully naked, I'm pretty sure I'm the only person I need to feel beautiful for.

    With that goal in mind, I bought some new earrings so I can stop feeling like my super-short haircut makes me look trans (I serve a lot of trans men in my practice and they are beautiful beings, but that's never been my personal style) and now I'm pretty sure I'm set. People are kind, so I have enough tea to last me about a decade. I got both a Covid booster and the flu shot, all of my medications are in the kitchen, and my closet is stocked with scarves and hats. I had my first acupuncture session last Thursday, which was lovely, and a fantastically relaxing massage on Saturday thanks to my awesome sisters. Now I just want it to start so I can stop worrying about what might be and get on with the business of dealing with what is. So...... BRING IT ON!!!!

    You've got this, ladies. We will survive it together and live long, healthy, beautiful lives.

  • Faith-over-fear
    Faith-over-fear Member Posts: 28
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    how was port placement? The timing of mine got crazy. Port will be placed tomorrow morning and chemo starts the next day:(

  • GRZ7279
    GRZ7279 Member Posts: 30
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    Jeez, unnecessary trauma doing that to you. Don't worry too much about the port placement. I'm allergic to lidocaine of all things, so the Dr. scared me a bit by telling me that the alternative numbing medication might not work that well. As it turns out, I didn't feel any pain at all. Just some tugging and the sedation made me feel very relaxed, so it was more boring than anything else. It took him about an hour to put it in. The most annoying part of the whole thing was just that the entire process was exactly like the mastectomy because I had to go back to the surgical ward and do all the pre-op and post-op hoopla. A lot of drama for something that wasn't that big a deal at the end of the day.

    I was sore for a couple of days and have a lovely, colorful bruise that adds to the whole Amazon warrior look I'm sporting these days. I did find that some Tylenol and Advil helped me sleep for the first three nights, but I didn't need anything during the day. Now a week out, it's just a little itchy. It is a rather large bump under my skin, and I was surprised that there are two small wounds. After a few days, I found the catheter (which feels like a large vein) running in between the two cuts they made.

    Hoping all goes just as smoothly for you tomorrow!

  • oldladyblue
    oldladyblue Member Posts: 302
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    Hi Faith, I hope your port goes well today. I had mine in last Friday and it was an easy operation with light sedation and local. It hurt for a few days, now is mostly itchy, tender when bumped or jiggled. I start TC chemo the day after you start. No one has mentioned either steroids or Neurlasta to me, just that I will get labs at 8:30 and start chemo at 9:30 and they will give me my "other meds" then with stuff to take home for nausea. I am getting my first infusion the same day one of the June ladies who got TC is getting her last. You might want to look at the June thread for what others said, to answer your question about Neurlasta. I am going to call and ask my chemo nurse about steroid and Neurlasta tomorrow.

    GRZ7279 thank you so much for your story, it really made me smile. What a great experience. I never went to a place I could be naked and use the hot tub with strangers. Brave of you! Good for you! I hope your first chemo goes well today.

    Noodlesg Thank you for posting that you felt OK after your first, I am so afraid of how chemo is going to make me feel. I have such an active life, and am working from home, so hope I can continue.

    gamzu710 Welcome to the thread. Waiting is so hard.

    angel2003 Good luck tomorrow with your first infusion.

    Sadiehen I hope your port placement went easily. I understand about the diet advice, mostly I had to stop all of the supplements and herb teas I use. Didn't want to do that. I think they've kept me healthy, and active and looking years younger than my age.

    LizzyLizzy How did your first infusion go?

    No one really in my life understands my fear and worry, my husband doesn't want to talk about it. It is so great to know that you ladies are out there, and we are all urging each other onward through treatment. I would like it if we all chime in and keep this thread active for all of use, I get emotional strength from each post. I missed the Tuesday zoom meet up due to a prior appt, but may try to get in on the next one. My nutritionist had a zoom salad making meeting for her "chemo ladies". That was fun.



  • Everythingispossible
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    I'm with you GRZ7279, bring it on. The sooner we. Get through this the sooner we can start our new normal life! I had my port yesterday, sleep was a little tricky; I'm a stomach sleeper! I agree with you the port was easy

    LizzyLizzy hope your first chemo went well!

    This weekend we will celebrate my three grandsons birthdays all at once, have a date night with my husband!

    The freezer is full and so is the pantry. Closet has new loungewear with port access for chemo days, hats and scarves are ready.

    Chemo starts Monday the 11th. Is anyone else triple negative n the group or having AC chemo followed by Taxol?

    Oldladyblue, people are just uncomfortable and scared too, worried they’ll say the wrong thing. I bit my husbands head off this morning for just being encouraging, I wasn’t in the mood. Glad we can all be here!

    Be Well Everyone


  • LizzyLizzy
    LizzyLizzy Member Posts: 8
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    My first infusion was on Monday. The worst part was the nurse hooking up the iv into my port, very painful. I me my oncologist right after and he felt terrible for not prescribing the numbing cream beforehand. So look into that if possible. Otherwise it was pretty easy and uneventful. I was at the clinic for over 6 hours so bring food and entertainment. My symptoms so far have been pretty mild and I can describe it best as a “mild hangover". Slight headache for the first couple days, slightly tired and my stomach felt a bit off(but haven't needed to take anti-nausea meds at all). I made the mistake of eating pizza sauce on Tuesday and I battled acid reflux for 24 hours(I've never had an issue with acid reflux in the past)…not making that mistake again so I am avoiding any tomato sauce. I woke up today with mild joint pain and I am noticing an increase in throat/mouth pain in the last few hours. I'm trying to stick to bland foods for now and drinking a ton of water(it's easy because I'm ALWAYS thirsty). I'm thankful that the symptoms have been mild and manageable so far this week.

  • Faith-over-fear
    Faith-over-fear Member Posts: 28
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    oldladyblue, port placement uneventful and done, had first infusion today and was pleasantly surprised that it wasn't bad at all. My mind has been torturing me since I learned I needed chemo. It's really relieved lots of anxiety. No symptoms yet. Good luck tomorrow. You will be fine.

    Lizzylizzy, glad to hear your week has been so manageable. Really encouraging to read. Pray it continues for you.


    Everything is possible, best wished for the 11th! You sound ready to go. It reminded me when I had kids. Freezer full and bag packed:)


    GRZ7279, I loved your story about your adventures with your sisters and the great time you had together. Just beautiful:)


  • oldladyblue
    oldladyblue Member Posts: 302
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    Everythingispossible - I can understand that the people who know me are uncomfortable or scared talking to me now. I wasn't thinking of that, but it is probably true. I haven't missed a day at work due to being ill in 5 years, so most folks probably thought I was sort of invincible till they found out about my breast cancer. I also can easily get riled these days, so perhaps I haven't had the "nice me" side showing enough. Especially to my husband....

    LIzzyLizzy - Glad your chemo side effects are sort of mild and like a hangover. I hope mine go like that. Thanks for mentioning the first use of the port was painful. I will ask about numbing creme as soon as I show up to the clinic tomorrow morning. My port is almost a week old now, but still hurts when I push on it, so I think insertion of the needle will be painful.

    I have to laugh at myself, I've been shopping on ebay for jewelry, getting especially happy when I find nice vintage silver pieces for low cost. More jewelry came in the mail today, presents to me that make me feel better. I think I'd better stop shopping, my sort of empty jewelry box is getting full now. Seems silly as I work from home, so the only person seeing the jewelry is me. And up until recently, I was only wearing my wedding band. But it makes me feel better for some reason to have it.

  • GRZ7279
    GRZ7279 Member Posts: 30
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    Everythingispossible I am not triple negative, but I am having dose dense AC followed by Taxol because I'm node positive and still premenopausal. My first infusion was yesterday. The nurse talked up how painful it would be to access the port, but it didn't bother me much. She gave me some lidocaine cream, in case anyone who hasn't started it yet would like to try to get some ahead of time. After four children, needles just don't bother me very much.

    I can't say the same for the symptoms afterwards. The one that surprised me the most was a temporary loss of vision. As I was walking out of the pharmacy a couple of hours after my infusion, I felt the nausea coming and then the world just went super blurry. I walked about half a block like that looking for my husband. As soon as he saw me, he ran to me and made me sit on the ground right on the sidewalk. A few minutes later, I could more or less see again, although using a computer wasn't happening. My husband and my oncologist both agree that it was likely a reaction to the Zyprexa they gave me for the nausea, so I'm not taking any more of that. Apparently, it can tank your blood pressure, which my husband says can cause an ocular migraine because there isn't enough blood reaching the optic nerve. That's a fairly rare side effect, though.

    Despite all the pills and the acupuncture, I was still pretty nauseated last night. I made myself do my usual workout anyhow because sitting on the couch feeling miserable sucked. I finally threw up lunch and then felt better. Today, I've been doing much better. Just taking the Zofran for the nausea. It was pretty mild today. I didn't have much of an appetite and went pretty slow with food. Did get out for a long walk with my husband and was able to work from home, but I didn't feel well enough to go into the office and risk throwing up there. The nurses told me that the worst symptoms usually occur between 24 and 48 hours, so I'm hoping mine were just a little early and I may be over the worst of it for this cycle.

    oldladyblue It is hard for people to process. Often, I feel the need to protect the people I love from it. My husband is definitely going through his own stuff as well. His father died of kidney cancer, so in many ways this has been emotionally harder for him than it is for me. My mother is also very anxious about the whole thing. She visits a lot now because she says she can only sleep when she's close to me. So I end up feeling like I need to be really strong for my loved ones because I don't want them to suffer. I guess I'm doing a good job because my children seem thoroughly oblivious to the fact that anything is happening at all. I get an occasional "how are you feeling, mom?" before they jump right back in to discussing school and their various friends and activities. I'm actually pretty happy about that because they are the only people who I get to be normal with. I still have to harass them about their homework and coordinate their activities. Makes me feel human instead of being just a cancer patient.

  • kksnurse
    kksnurse Member Posts: 2
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    hey, hi, hello! New here. Post op 2 weeks bilateral. One drain out, one still in. Waiting to heal enough to start chemo. Taxol and herceptin. No port yet, waiting for that too. Waiting. This is so surreal. I am so thankful to hear about how everyone is doing. I am for some reason so sad about my hair. Is that weird? I don't want strangers to look at me. I am getting a wig, I guess I'm just starting to accept all of this. Thank you for sharing your stories, you get me, and I will get you. Gods blessings to you all!

  • oldladyblue
    oldladyblue Member Posts: 302
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    Well, first chemo infusion over. I drove myself to and from the hospital and everything went OK. My labs from yesterday were fine. Got 11 pills, total of 5 medicines, to take when I made it in the chemo room: anti-nausea, steroids, tylenol, and 2 others I can't remember. And I forgot to ask for the list, so I don't have the paper describing them. Did ask for port numbing, which worked fabulously, plus the nurse gave good breathing directions as she inserted it, I barely noticed when it went in. I'm really glad I have the port now. The 2 chemo drugs were each dripped in over an hour each. Then another lab was done to check a few points, was fun to see my nurse draw the blood out of the port. Still freaks me out that the catheter end is in my jugular vein, but well, it works fine. I ate breakfast, lunch was given to me during chemo, and a big dinner too. So no nausea at all. Did go Number 2 twice tonight, which is unusual, and I just feel a little "off" mentally. Overall, this was an easy day, and my before-first-day-chemo fears were WAY too big for how it actually went.

    kksnurse - Welcome! Sorry you have to be here, but glad that you are. I get it on the hair. I have a human hair wig I bought for $10 at a thrift store. Love the wig. I will get it washed and styled next week. Also, Knots of Love donated hand knitted/crocheted hats to my VA hospital, and I got several lovely soft hats to take home today. They will be fun when I am bald and it is cooler weather. One woman also doing chemo rocked a totally bald head, she was fine with no hair. But do I want to go out in the world and have strangers stare at bald me, heavens no!

    GRZ7279 - Good that your port use went well. I am very sorry the drugs are kicking you with heavy side effects already. The vision thing would have scared me badly. Good that your husband was there to take care of you, for sure! Here's hoping tomorrow is better. You helped me alot with the emotional thoughts others might be having. The normal conversations with your kids made me smile. I can understand your mom wanting to be near, that closeness helps her I'm sure. I also can see and why your husband might be distancing if he lost his dad to cancer.

    Faith-over-fear - Thanks for your good wishes! I really had pretty much the same experience as you, my anxiety over chemo was sooooo bad. The actual day today was not bad at all. Reading your post last night before bedtime helped me to be less worried and I actually slept 7 hours straight through the night before my chemo. It is VERY rare that I get more than 6 hours straight sleep. For months since diagnosis, I've had lots of sleepless nights of maybe 4 hours sleep. I had so much anxiety that literally my blood pressure was reading way high every time I entered the hospital for pre chemo appointments. Today on checking in, my blood pressure was barely higher than it normally is.

    Sadiehen, Angel2003, Noodlesg, Gamzu710, let us know how you are doing, I hope things are going well for you.

  • Noodlesg
    Noodlesg Member Posts: 33
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    It's been 4 days since my first infusion, and my biggest complaint is the fatigue. I got sick of being indoor, so on day 2 I went to a brisk walk, 3 miles. It's a route that I normally run, and it's quite humbling for me to have to not only walk it, but also stop for breaks. I am premenopausal and my time of month came a week early because of chemo. The joys! If anyone has any tips on how to keep up your energy level, please do share.

    GRZ7279 - So sorry to hear that you had such bad side effects. I hope you feel better with each new day.

    kksnurse - I'm totally with you on the hair part. I normally wear my hear quite long, and last week I went to have it chopped off into a pixie cut after recommendations from my doctor. It's so emotional, I still cry thinking about it. I have a 8 yr old who doesn't really understand more other than 'mommy is sick' and I feel that once the hair loss sets in, it's going to sink in and start affecting him. I have two hand me down wigs, but I think I'll bite the bullet and buy one for myself. They're so expensive.

    oldladyblue - I'm glad your first infusion was okay! Kudos to you for driving yourself to and from the hospital, too! I got so many meds, too...seems like they're going to be the norm for a while.

    Thank you to everyone who suggested lidocaine for the port!