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Starting Chemo This Month (Dec. 2022)

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macaroon59
macaroon59 Member Posts: 10

Hi All,

A little bit of family history, just lost my sweet Mom to metastatic BC 5 yrs. ago. Hers was one of the hormone types (not sure which one) and she was on I think Tamoxifen for 5 yrs. and then they took her off of it. Seems once they took her off, the cancer returned with a vengeance and she only survived another couple of years! Her doctor had told her that if you're going to get BC then that was the one to get but apparently it wasn't! Also, just lost my wonderful Dad in 2021 to bladder cancer! I miss them both so much and not a single day goes by without thinking of them! I wish they were here to support me through this new journey I'm about to take!

I was diagnosed with Non-Hodgkin's Lymphoma in 2021 but is slow growing so no treatment needed at this time. Then, August of this year I was diagnosed with Triple Negative BC and starting chemo Dec. 28th! This has hit me like a ton of bricks because my first two grandbabies were just born, one in August and one in November this year! The diagnoses seems like a cruel joke as I've been wanting grandkids forever and now that I have them, this cancer comes along to disrupt everything!

I'm 63 (64 in Feb.) and am so scared of starting chemo that I haven't even read the info given to me regarding side effects, etc.! Anyone else starting chemo this month or in the near future? Or, anyone having gone through chemo recently who may want to share their experience?

BTW, I had a lumpectomy in Oct. to remove a 1.2 cm tumor, 1 node removed and negative, also margins were negative.

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  • moderators
    moderators Posts: 8,085
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    Dear macaroon5, we're sorry for all you've been through... but glad you found us. Welcome to Breastcancer.org, and thank you for starting this thread. We're sure you'll be in good company here. Hug

    If there's anything you need help with or have any comment for us, please feel free to contact us. We're always here.

    Best wishes,

    From the Mods

  • hippiemom1
    hippiemom1 Member Posts: 2
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    Hello, I know what you mean about being a grandparent and then having this hit you! I have a wonderful granddaughter that i used to pick up from school everyday and spend the afternoon with at my home. But, since this diagnosis I have not been able to do that, she seems to always have something!!

    I started chemo in the middle of November. Two AC treatments down. I can say that it has not been unbearable. I have about 4 days after that I am just completely wiped out, stomach kind of queasy and no appetite, even water tastes awful. But after that I bounce back and feel pretty good until my next treatment. I am 58 and also have triple negative breast cancer.

    I am so sorry about the loss of your parents and I know that makes this journey harder. I wish you so much peace and luck with your chemo. I am having chemo first, then the lumpectomy and then radiation. I am just counting the days and waiting for this part of my life to be done. I want to get back to living like I did before. Retirement was supposed to be fun! Ha!

  • macaroon59
    macaroon59 Member Posts: 10
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    Hi hippiemom1,

    Thanks so much for your response! I'm sure it's hard not being able to spend time with your granddaughter, they do tend to get sick a lot at that age.

    It's good to hear that your chemo has been bearable! I will tell you my lumpectomy was a breeze & I hardly had any pain except some soreness where they removed the lymph node & that was mainly because I would forget & accidentally reach out too far with that arm.

    I will have 4 cycles of chemo & then radiation. Wish I had gotten one of the other bc's where I could just take a pill!

    Yes, retirement is supposed to be fun, I don't know why they call them the "golden years", lol!

    Best of luck with your remaining treatments & lumpectomy! Please keep in touch, would love to chat more!

  • inmymindseye
    inmymindseye Member Posts: 6
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    Hi Macaroon -

    My condolences for the recent loss of your dad. You have a lot going on and we are here with you! I turn 47 on Wednesday and start chemo (first out of 4 round of TC) on Thursday 12/15. Although each person's experience is unique, I think it will be nice for us to share our chemo first experiences here. I wish you all the best!

    Holly

  • macaroon59
    macaroon59 Member Posts: 10
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    Hi Holly,

    Thank you for your condolences on the loss of my dad! Wow, you are young and I'm so sorry you have to deal with this evil disease! Yes, I agree each experience is unique and this forum is a great place to share those first experiences (and beyond) and connect with those who are going through similar treatments, etc. Since my daughter and son have babies now, I don't want to burden them with all my thoughts and feelings!

    I was due to start chemo on 12/28 but my oncologist moved it to 1/11 because he will be out of town for the holidays?! I will be emailing him today as he was so insistent that I start asap so moving my tx out further because he's on vacation is kind of freaking me out! I don't know why he would even need to be here when I start?

    Best wishes with your treatment and please feel free to reach out to me any time!

    Cindie

  • greenbean2468
    greenbean2468 Member Posts: 19
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    Hi macaroon59,

    I'm so sorry you're having to go through this on top of losing your loved ones.

    I just wanted to second what folks said to me before I went through my first round and I found it to be true: it's tough but it was not as bad as I thought it would be. I am on the other side of my first dose of chemo (Taxotere and carboplatin), getting ready for my second one next week. Not knowing how it was going to be may have been the hardest part. Learning about possible side effects and being ready to treat them was helpful for me. I stayed on top of nausea with the medicine they gave me so that it was never a problem. I had no appetite but things like pierogies, ensure, yogurt, bananas, Gatorade, almond butter/crackers, smoothies, and Kefir kept me from running out of steam. The other tips I was given that I tried to follow were to stay hydrated and to walk as much as I could and not be a couch potato. Even on the days I felt my worst. I walked around the block.

    Sending all good vibes your way! You can do this. I hope you will be extra gentle and kind to yourself.

  • macaroon59
    macaroon59 Member Posts: 10
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    Hi greenbean2468,

    Thanks so much for taking the time to respond! Great to hear that your chemo has been manageable! I finally did read the info given to me regarding side effects, etc. and it doesn't sound as bad as I thought. I will definitely stay on top of the nausea with meds! I agree the hardest part is the not knowing how my body will react.

    Best wishes to you and I hope your remaining treatments are as tolerable as the first one!

    Please keep in touch and let me know how you're doing!

    All the best,

    Cindie

  • sarahmaude
    sarahmaude Member Posts: 338
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    I just wanted to stop by with some encouragement. I had my four rounds of TC from May through July 6 this year. It was the opposite of fun, but in retrospect, it was certainly tolerable. I was able to keep teleworking throughout the treatment, though I had no energy for much anything else.

    My biggest side effect was fatigue. I'm a naturally high energy person, so it was pretty unfamiliar for me to feel comfortable doing nothing for days at a time. I read over 100 books on my Kindle reader (Kindle Unlimited provided a steady supply of good-enough reading for my brain). It took me much longer to regain my energy than I expected. I was still pretty wiped out for 2-3 months after my last treatment. I don't think that's true for everyone, but it was for me.

    I cold capped, and it worked well enough that I never needed a wig or hair covering. I think that by now, the way my hair is growing, I'd already have a pretty thick pixie hair cut worth of hair had I not gone through the expense and effort of cold capping. For me, I'm glad I cold capped because it allowed me to keep me from sharing my cancer diagnosis from a really large group of workers where I work as an engineering leader, but I certainly wouldn't say that it's for everyone.

    I was fortunate that I was never had nausea or diarrheal symptoms. I think that the premedications they give us these days have made that much less of an issue. Money I spent on queasy drops, anti-nausea meds or antidiarrheal treatments was wasted for me (though others in our support group did have some nausea). On the other hand, the steroids did result in the need for regular doses of Miralax.

    As you go through your treatments, be confident that the bad parts are temporary, and the benefit of the chemo we are given for breast cancer is well proven. I'll be thinking of you and hoping you are all free of any major side effects.

  • lef
    lef Member Posts: 32
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    Dear macaroon59 -- I am so sorry for your losses, but also envious of those grand babies. Congratulations!

    I started chemo in September and finished today. I think people have very different experiences, depending in part of the particular regimen they've prescribed. My chemo is different from yours, so it may be more useful to hear from people who've also done AC + T.

    I found the day before my first infusion the worst -- I was expected a far worse experience than I actually had. After the first one, I understood the process and was less terrified to come in.

    I've been very lucky with side effects. I have been very tired, but otherwise have not felt that bad. Minimal queasiness, no infections or other serious side effects.

    I was concerned about a neuropathy, so I used these: https://www.amazon.com/gp/product/B09W5KLVDR. (There's nothing special about them, they were just the most readily available when I decided to do this.) I found it impossible to leave my bare hands and feet in these for more than a few minutes, so I wore thin smart wool socks and gloves under the SuzziPads. I don't know if this made them less effective -- my hands and feet got plenty cold even with the socks and gloves.

    I also used the Paxman Cold Cap and, while I lost almost all of the hair on the rest of my body, I think I lost only about 30% from my head, which has been a great relief. People have very different preferences -- a friend found the cap unbearable and decided she'd rather just lose her hair. She's 2 years post-chemo and doing great -- with plenty of regrown hair. I found that the cap was really uncomfortable for 10-15 minutes and then not tat bad.) The cap also means that you have to spend a lot more time at the center -- times vary with your particular chemo, but for me it means 30 minutes before chemo starts (not a big deal because it takes at least 10-15 minutes to set up the IVs, give me the pre-chemo drugs (which were extremely helpful) but then 90 minutes post chemo -- so it's a long day.

    My mother died of breast cancer almost 40 years ago -- after a 5 year battle to survive it. I still remember how sick she was from the chemo. But they've really gotten a lot better at designing the chemo so that doesn't happen -- they give you anti-nausea drugs and other drugs based on your specific chemo. The nurses at my cancer center -- who have all been terrific -- told me it's "not your mothers chemo" and that the pre-chemo drugs are a game changer. That has certainly been my experience.

    I will be thinking of you and hoping that this will be as easy as possible.

  • macaroon59
    macaroon59 Member Posts: 10
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    Hi sarahmaude,

    Thank you for stopping by with your words of encouragement! I've heard a lot of people saying that fatigue and lack of energy was their main side effect. I make earrings and love crafting so I'm hoping I have enough energy to continue my hobbies as they are so enjoyable and help to keep my mind free of negative thoughts!

    I'm glad the cold capping worked for you although I won't be using it as it's too expensive for me. I just chopped about 6 inches of my hair off so I won't have such long pieces falling out but at my age (will be 64 in Feb.) I'm not that concerned about losing it. If I were younger and still working I'm sure I would consider it. My only wish now is to be here to see my grandbabies grow up!

    I'm so happy to hear that your symptoms were minimal and tolerable and again, thank you for responding and sharing your experience!

    Best wishes to you for a long and healthy life!

    Cindie

  • macaroon59
    macaroon59 Member Posts: 10
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    Hi lef,

    Thank you! The loss of my parents was very difficult but knowing they are together again helps me get through each day! I am so sorry for the loss of your mom and that she had to suffer such bad side effects! Even though it's been 40 years, I'm sure you still feel that loss every day!

    My grandbabies are the light and joys of my life and I will fight this ugly disease with everything I have so I can be here to watch them grow up!

    Glad to hear that chemo has changed over the years and is more tolerable with the meds available to us now.

    Thank you for your kind words and I'm happy to hear you have finished your last chemo treatment with minimal side effects!

    Wishing you a healthy and happy future!

    Cindie


  • margecandoit
    margecandoit Member Posts: 146
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    Macaroon59- I am sorry for your losses. I understand losing a mother to this. I lost mine 15 years ago and had to watch her go through this. It’s good to remain your self that thing are different now and keep positive. I have had to work hard on the mental side of this too. I am 47 and hoping to have a lot of grand baby to watch grow. I had my biopsy and the next day my first grand baby was born and 3 days later I found out I had cancer. He has been a great joy to keep me going through the hard days. I first started with chemo AC it wasn’t as bad as what I thought it would be but I think it’s important to keep up with the nausea meds and plan to sleep and rest for four to five days. I couldn’t stand Metal taste so silverware and I have a metal water bottle that I couldn’t use. Taxol wasn’t that bad I did 12 weekly treatments. My hair even started growing back except for my eyelash and eyebrow I just got those back about two weeks ago. You can do this!!! I wish you all the best.

  • macaroon59
    macaroon59 Member Posts: 10
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    Hi margecandoit,

    Thank you for reading and responding to my post! I am so sorry you also lost your mom to this ugly disease, it takes way too many lives! It doesn't matter if it was 15 years ago or today, the loss of a mom stays with us forever!

    Your situation sounds a lot like mine. I got my biopsy a couple of days before going out of state to meet my first grandbaby and while I was there I got the phone call about my diagnoses. We do video chats every week so that helps me and brings me so much joy!

    Wow, you are only 47, seems like more women are getting bc at younger ages! I truly hope they find a cure soon!

    So glad to hear that your treatments went smoothly and without many side effects!

    Wishing you all the best for a healthy and happy future!

    Cindie

  • inmymindseye
    inmymindseye Member Posts: 6
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    Hi margecandoit -

    Congrats on your first grand baby! I know that was such a roller coaster of emotions for you during that time. I’m glad he is bringing you joy s as you go through your treatments.

    I just turned 47 yesterday and have my first chemo infusion this afternoon. We have two grand babies, r and 2, that live 9 hours away so we don’t get to physically see them often. I stopped two kitten brothers a few week after my lumpectomy and they have been such a joy for me during this time. Wishing you all the best!



  • margecandoit
    margecandoit Member Posts: 146
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    macaroon59- I think your right it’s alway hard to loss your mother. Keep chatting with those grandbabys they lift your spirit and maybe you need it get some extra video chats during the week as needed. I think we are getting diagnose younger because there is better Technology to find it than before. I didn’t feel mine at all found during my mammogram 6 months after a clear MRI. I was on a high risk protocol. My mom was diagnosed at 48 so I was only 2 years younger. Hope you are having a good day.


    inmymindeye- Happy Birthday!!! Welcome to 47. I was diagnose at 46 also and celebrated 47 with doing chemo. Yes the grand babies help a lot. Our second is due in April when our first turns 1. That what I am looking forward to. Hope I will be done with radiation by then. I am four week from my lumpectomy still feel weird and numb I hope that gets better. Hope your first chemo goes well. Take the nausea meds and sleep.

    If you guys need to talk or vent I will try to keep up in here. You can do it!!!

  • macaroon59
    macaroon59 Member Posts: 10
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    margecandoit- I think you are correct regarding better technology. I didn't feel my lump either and had a clear Mammogram and MRI the year prior. I do have dense tissue though so I understand it can be harder to see which is why they do an MRI on me in addition to the mammogram. Apparently, lumps can also be missed until they reach a certain size.

    inmymindseye- Happy belated birthday!

  • inmymindseye
    inmymindseye Member Posts: 6
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    Thank you Cindie and MargeCanDoIt (may I call you Marge?)! I'm coming up on 48 hours since my first chemo infusion. The day was busy! My appointment wasn't until 2 PM but I went out to breakfast and "ran to Target for a few last minute things" - it all took longer than expected. I showed up to my treatment a couple of minutes late (I HATE being late and traffic was worse than expected. I will definitely leave more time for the next sessions)

    Between the cooler full of cold caps and the oversized bag holding my electric blanket and a fleece blanket, I felt like I was moving in! I didn't have a chance to precool my head for 45 minutes before the chemo - more like 25. When they started the Taxotere they did a slow 15 minute drip to watch for any allergic reactions. When that went well, they upped the drip and then within 5 minutes or so as I sat forward to get ready for a cap change - Bam! Lots of seeing stars, flushing, nausea.

    I hit that call button so fast and the nurses were entering the room before my partner even realized something was going on with me. They stopped the drip and pushed Benadryl & more steroids while talking me through what they were doing and reassuring me that it would stop the allergic reaction process. They had it under control within 5 minutes. The allergic reaction came on fast and intense but they were ready just in case. They let the meds take effect for 30 minutes before the resumed the drip and I was able to tolerate the rest of the infusion well. They will be doing benedryl premeds for my remaining 3 infusions. I'm more tired today with a little headache and some aches but the pain level is usually at a 3. It's a little annoying but not anything unbearable. I hope you are all having a good weekend!

    Holly

  • margecandoit
    margecandoit Member Posts: 146
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    Holly - yes you can call me Marge. I am sorry you have an allergic reaction to your chemo. That seem like a really long day. I also didn’t do the cold capping. They said it wouldn’t work with the one I had. I know some women have had success with it. Hope you are getting some rest this weekend.

  • macaroon59
    macaroon59 Member Posts: 10
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    Holly- So sorry your first treatment triggered an allergic reaction! Glad the nurses got it under control quickly & that your treatment has been bearable.

    I hope your future treatments go smoothly!

    Cindie

  • lef
    lef Member Posts: 32
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    Dear Holly -- I am so sorry you had such a bad reaction. I had a bad reaction to my first chemo drug --but it happened within moments of the first chemo hitting my bloodstream. My team was also incredibly quick and efficient about remedying the situation. Are they going to keep you on the same med but with additional pre-medication? Or are they switching you to a different protocol. I've heard from people in both categories and it appears that they've been OK once things were adjusted. (I had no problems -- other than the routine side effects -- with my second "cocktail," but I did have to switch to weekly infusions.) I hope your next infusion is less eventful.