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Starting Chemo March 2024 Support Thread

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  • clewispe
    clewispe Member Posts: 3
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    I am starting Taxol and Herceptin tomorrow. Feeling anxious about how things will go and what I will feel like during weekly treatment (duration is 3 months).

  • walker137
    walker137 Member Posts: 1
    edited March 19
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    I just started chemo and Keytruda on March 4th. I had some stomach issues (diarrhea mostly) each week (worst on Tuesday night into Wednesday with Monday morning into afternoon treatments). I work in a small, uncrowded office and have been able to work at least a couple of days each week.

    I am concerned now though, because at my third treatment today I had an allergic reaction to Taxol, so they had to stop the treatment only a few minutes in. Now a different drug will need to be used, and I’m concerned about this lengthening my treatment time before surgery (was meant to be 12 weekly treatments of Taxol Carboplatin with Keytruda every 21 days, followed by 4 doses of A/C with Keytruda every 3 weeks and THEN surgery), and I’m also concerned about whether other drugs are as effective. Anyone using a different combo of drugs for triple-negative Stage 3A breast cancer?

  • moderators
    moderators Posts: 8,278
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    Welcome, @clewispe and @walker137! We're so sorry you find yourselves here, but we hope you find this community to be a source of support!

    Walker, that's a frustrating set back, but more common than you'd think! We hope you're feeling ok after your reaction. Check out THIS thread on taxol, lots of members sharing their experiences there. It's an older thread but very informative - you can also search 'taxol' and pull up several threads that you might find helpful.

    We want to let you know we offer very supportive, moderated Virtual Community Meetups. There are a number of different groups and times, so if you're interested, please check them out here: Virtual Community Meetups.

    We’re here for you,

    The Mods

  • luzio19130
    luzio19130 Member Posts: 7
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    Stage IV here starting second does of Trodelvy tomorrow. I completed 6 months of Chemo last summer/fall.

    My best advice is to stay hydrated! stay ahead of the nausea and especially the constipation.

    Get a lot o f rest when you can.

    I worked oart time, every day, through the first six months of chemo because I rested when I wasn't working.

    Good luck

    Michele

  • moderators
    moderators Posts: 8,278
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    @luzio19130 we're sorry you find yourself here, and we are so hopeful for you that the Trodelvy really works!! 💕

  • rugbymom
    rugbymom Member Posts: 1
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    Hello! starting TCHP next week and my process is to prepare prepare prepare. Any suggestions on what to bring with me to the first appointment?

    Thank you!!!

  • megbbb
    megbbb Member Posts: 1
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    Hi there,

    I am hormone positive Her2 negative breast cancer. I had a mastectomy and lymph node removal in February. I just had my first appointment with oncologist and she has suggested chemo and hormone therapy. My first lymph node had ITC (.12mm). She said the chemo increases my survival by 5 percent. The numbers aren’t really adding up for me and I’m wondering if I should be asking other questions before I agree or decide not to go for chemo. Any help or suggestions would be appreciated. She is recommending Taxotere and cytoxan.

  • moderators
    moderators Posts: 8,278
    edited March 28
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    @rugbymom and @megbbb, welcome to the BCO community!

    megbbb, we know that making treatment decisions can be difficult, especially when there is a lot of information to consider. Gathering comprehensive information is essential. This includes understanding your risk factors, potential short-term and long-term side effects of the proposed chemo regimen, exploring alternative treatment options, and weighing the pros and cons of each option. The following article can help you understand these important aspects in more detail: Planning Your Treatment. We hope it helps! Please, come back and let us know what you decide and how things are going.

    rugbymom, hope this article from our main site helps you get prepared: What to Expect During Chemotherapy Treatment

    Best,

    The Mods

  • ava55
    ava55 Member Posts: 42
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    I would do it for the extra 5%. I had a similar journey to you (mx two years ago they found 5mm IDC but nothing in lymph nodes). I didn’t have chemo as too small to register on oncotype. 1% recurrence chance and am back now about to start chemo after they found 1.1m in one lymph node (out of 20). It’s scary but anything that has gone to even one lymph node even very small is worth trying everything to stamp out. I am due to start AC-T as a result. It’s so hard to make such a big decision and chemo is one those. Hope this helps.

  • clewispe
    clewispe Member Posts: 3
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    I am doing cold capping. If it works, I think it will be worth it. But I didn't realize how long the cold capping is and how much longer the treatment days are because of it. I also did not realize that I can't wear a hat (I wear hats all the time!) and that I can not wash my hair as often as I usually do which gets really oily and limp. I also have developed some crusty patches on my scalp. Is anyone else doing cold capping?

  • jenn55
    jenn55 Member Posts: 1
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    Clewispe, I did cold capping (Paxman) during 12 weeks of Paclitaxel and wasn’t told not to wear hats. I wore hats (it was last winter) and didn’t experience any issues. I definitely think it was worth it, despite the extra time. I kept almost all of my hair (though it is thinning now due to Herceptin). For me, it was a matter of medical privacy. I didn’t want everyone who saw me to know I was undergoing treatment. It made life feel more normal. I didn’t get the crusty patches. But as for the oily hair, it should get better as your scalp adjusts to the new shampoo schedule. I’ve stuck with 2x a week shampooing and haven’t experienced oily hair for months, though it does get a bit limp. Anyway, I would recommend the cold cap to anyone, as a tool for maintaining as normal a life as possible during chemo.

  • moderators
    moderators Posts: 8,278
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    @clewispe and @jenn55, welcome to Breastcancer.org and thank you for participating in the chemo group! We wanted to share with you a thread in our community where members are sharing their experiences and tips on using cold caps. It's called Cold Caps Users Past and Present, to Save Hair and we thought it might be helpful for both of you.

    Good luck, and looking forward to hearing more from you soon!

    The Mods

  • rlschaller
    rlschaller Member Posts: 52
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    @luzio19130 I too am stage IV and starting Trodelvy next week. My body manages the chemos I've been on pretty well, with minimum side effects. I eat well (mostly vegetarian) and exercise and meditate daily, which all helps I think. Can you share a little more on your experience? I've read the patients handout and talked with my MO, but would love to hear from someone who is actually doing the treatment… if you want to of course, no worries if not.

  • luzio19130
    luzio19130 Member Posts: 7
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    good morning. I am currently on a "chemo holiday" after 3 months of trodelvy. My recent scan showed a complete response and the cancer in my right side lymph nodes was not present on the scan anymore. Obviously a good outcome however I am still stage IV and except a recurrence at some point. My Oncologist and I agreed to a 6 week break because the trodelvy was causing such severe fatigue and diarrhea that I was ready to quit altogether and instead he agreed to this short break. During the last 3 months he reduced the dosage twice, to where I was on lowest dosage. Part of my problem with tolerating it is because it's been a long 12 months of 6 months chemo and immunotherapy then double mastectomy then lymph node removal on left side, where all nodes were cancerous and removed. Then 3 months trodelvy. Anyway that's my experience. I'm happy to chat more if you have any questions

  • rlschaller
    rlschaller Member Posts: 52
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    Thank you for your quick response. So helpful and I appreciate your taking the time. I hope the chemo holiday restores you. Its not easy. I'll post how mine goes and will reach out if I have questions, thank you for offering to chat more as need be. Its such a journey, all of these treatments and adjustments of mind and spirit. I'm up for it, and happy to know others are on this path whether we want to or not, here we are. With gratitude, Rhonda

  • margesimpson
    margesimpson Member Posts: 70
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    @luzio19130 @rlschaller

    I think im starting trodelvy next month.
    i did chemo years ago but this feels different because it might be my last treatment (and my hair is now really long!)

    Does everyone lose their hair? What’s the quality of life like? Any advice? I’ll be doing it as part of a clinical trial.

  • rlschaller
    rlschaller Member Posts: 52
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    @margesimpson happy to share my experiences and hope you will do the same ❤️ I had my first infusion of Trodelvy yesterday. And so far I feel great lol. It was a very long day. I had to wait an hour after my doctor visits and blood work for an open chair. Then the premeds. My premeds are Aloxi, Emend, Tylenol , Benadryl, Pepcid, Dexamethozone. Had to wait an hour for the delivery and then the premeds took 45 minutes or so. Then the first infusion was 3 hours. I felt sleepy and actually napped for the first 2 hours which I have never done before. Nurse said it was the Benadryl that made me sleepy. Afterwards felt good, traveled home and had a bowl of fruit and almonds for dinner with a green juice smoothie, since I was not very hungry. I ate a big lunch during the infusion after my nap, of a grilled vegie sandwich with an orange, and felt great during the last hour. Got up this morning at 5:30am and saw your email post, so wanted to respond first thing. My next infusion on Day 8 is Wed June 27 and then 2 weeks break until July 10th.

    I also like my hair now that it’s back! I’m told some do loose it, some it thins, and some have no side effects at all. I’m trying Dr. Jane Plant’s ( loved her books ) Her advice of drinking fresh made daily ( though I make it every other day) Carrot Juice (sometimes with celery, tomatoe and ginger) and Green Apples (I use Granny Smith) with Fennel juice, along with watermelon juice ( haven’t done this yet but will on occasion.) She had a group of 65 women following a test regiment of these juices and it helped ..they did not loose their hair.

    I also exercise every morning either Chi gong for breathing/ lungs health and HIIT, Cardio, Strentghts workout. 20 minutes mostly via YouTube videos. if you are interested I’ll post the links.

    And I meditate as well. I’m a meditation mentor/teacher and I find Meditation is a vital part of healing and wholeness as I live with cancer. If this is of interest I highly recommend Allevi8 app ( free for one month, then $20 monthly if you want to continue with it) I like this community, mostly in Australia but it is international, Small group of folks with cancer or Ms meditating together, this is the work of Dr. Ian Gawler ( greaook You Can Conquer Cancer) if you would like to check it out / and or begin or continue with meditation. There are also excellent YouTube teachers and I have mediation audio files on SoundCloud under my research project The Mindfulness Collaboratory, happy to make that available if anyone is interested in seeing what that might be like.

    Hope this is helpful ! I’ll post along the way. Happy Thursday.

  • luzio19130
    luzio19130 Member Posts: 7
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    good morning ladies. I am currently on a 6 week Chemo Holiday, as my oncologist calls it. I did 9 sessions of Trodelvy, had a good scan, and asked for a break from treatment because it has been a long, hard 12 months of different chemos and two surgeries, and I was feeling like I was ready to quit treatment completely so my oncologist agreed to a short break.
    Trodelvy is a tough drug. My right side lymph nodes were full of triple negative cancer at beginning of march. By may, the scan showed no cancer. I am Stage IV.
    I say it's tough because as you start it at the highest dose, it knocked me out. Days 3 and 4 following infusion were the worst. Fatigue and diarrhea were the worst side effects. Stay hydrated. Also please know that if after a few sessions you find it too difficult they can reduce the dosage.
    Rischaler: I am interested in meditation. I have been reading the Tibetan Book on Living and Dying. It's very interesting and I am encouraged to try meditation. My negative thoughts creep in a lot over this diagnosis.
    im glad to continue this conversation. Best of luck. Michele

  • margesimpson
    margesimpson Member Posts: 70
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    thank you both for replying- I’ve been feeling anxious about starting. I think I can do this. Lots of good advice, I’m not sure if I could follow it all but I now know what I can aim for, and I’ll ask about reduced dosage if needed.

    I have been listening to Tina turner’s meditation which I enjoy and helps my brain be quiet.

    I’m having a scan tomorrow which I think will be my baseline before starting and I’ll see my dr next week.

    Please do update on how you’re feeling, the little details interest me and help me mentally prepare! X

    Thank you both so much!

  • rlschaller
    rlschaller Member Posts: 52
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    Marge - Good luck tomorrow during your scan. I find watching my breath and counting my exhales with each breath from 1-10, and then repeat… over and over, gives my mind a good point of focus , and is very peaceful. It passes the scan time with a sense of calm, very helpful.

    Michele - I loved that book by Soygal Rinpoche. I used his white light meditation with my mom when she was passing. I was just reading that section when she died, it was a beautiful experience. I teach meditation am happy to help you get started and point you in a few directions. I would highly recommend downloading the Allevi8 app created by Ian Gawler, try for a month while it’s free and listen to a few tracks. Ian Gawler was a student of Soygal Rinpoche for 10 years before Rinpoche died. His meditation books are also simple to follow. I also have recorded mediations free on SoundCloud under my research program Mindfulness Collaboratory. You are welcome to them.

    I’ve read about Tina Turners meditation, so glad it is helpful. The mind needs training and taming. Negative thoughts masquerade as the truth. Learning to come home to the calm and peace beyond and below thinking is a committed practice. I like the Ram Das practice on Loving Awareness which helps my negative thinking when it pops up. I’ll post it in Contemplative Practices topic. I started this topic / thread a few months ago - Contemplative practices - Affirmations, white light visualizations, healing meditations

    I have so much to share on this topic, perhaps better to post it all there than here. If you are interested to join me there as well.

    And I’ll continue to update here each week on how I’m feeling on the Trodelvy of course.
    warmly, Rhonda

  • margesimpson
    margesimpson Member Posts: 70
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    @rlschaller how are you feeling today????

  • rlschaller
    rlschaller Member Posts: 52
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    @margesimpson morning - so far so good, im feeling great.
    No major side effects that I can notice as I begin treatment. I keep a journal and track how I feel day by day, which helps me plan and stay present. Love journaling ! This is day 5 of the first infusion of Trodelvy, and only thing I have noticed so far was on day 3 my face was a little flushed (which happened also with all of my other chemo treatments on day 3) and feeling a little off, spacey, and a little impatient with my colleagues at work on Friday…. But that could have been my personality and not the drugs lol.. second round/day 8 of first cycle of Trodelvy is Wed. My old MO called me Friday to see how it went and how I’m was feeling, I saw my new MO the day of the infusion. Lots of change around me as I transition to a new MO, as the old one is moving on to a different doctor group. Both see Trodelvy as a positive choice for treatment , I’m encouraged! I’ll let you know how We’d day 8 infusion goes.
    We are having a heatwave here in the NYC area, and that is dreadful. It is so hot! Hope where you are it’s cooler and comfortable. I am so grateful for air conditioning. 🌈

  • margesimpson
    margesimpson Member Posts: 70
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    oh wow- I’m glad you’re not having a hard time. Hopefully it remains manageable as you go on.

  • rlschaller
    rlschaller Member Posts: 52
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    Hi gals, so far so good. Had the Day 8 infusion on Wednesday, so am finished with the first cycle of Trodelvy. Now 2 weeks off until cycle 2 begins. Woo hoo. Feeling really good. Slight fatigue but nothing much, just a little sleepy on day 4. Only wrinkle is my white blood cell count was low, it’s called neutropenia. Not uncommon. So my MO added 2 days after my Wednesday Infusion an injection that I do at home for two days called Zarxio. The nurse showed me how the first time and I did it myself, and then at home again the next day. I was nervous but it was really easy. And I like putting my belly fat to good use, lol… pinch and and shoot basically. And the best news is the Trodelvy is definitely lessening the cancer sells growing on my skin. For the first time they have dramatically faded and some areas disappeared already. It’s called local advanced disease on the right breast, and the Enhertu did not budge it , it actually grew more and now it’s finally starting to fade. I’m so happy. So all in all, even with the surprising need for Zarxio, all is good. I’m also noticing the large tumor in my right breast feels smaller, so I’m hopeful it has stopped growing as well. Happy Sunday.

  • margesimpson
    margesimpson Member Posts: 70
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    oh wow, can’t believe you can visually see improvement already! Absolutely shocked. I probably won’t be starting on it anymore, my scan results showed improvement of my liver but increases in a few bone lesions. To be eligible for the trial I had to have no improvement- so mixed results. Hopefully I can avoid getting another femural nail.

  • rlschaller
    rlschaller Member Posts: 52
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    Hi @margesimpson , sorry about the trial. Let us know what your next steps are. We are here for you!

  • margesimpson
    margesimpson Member Posts: 70
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    aw thanks, I was actually a bit relieved that the decision was made for me. I didn’t see my usual oncologist so I’ll have more details in a couple of weeks about treatment options. I would still love to hear updates though!

  • rlschaller
    rlschaller Member Posts: 52
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    Started cycle 2 of Trodelvy, saw my MO and surgeon. Surgeon would like to do a bilateral mastectomy, if the dot on my cervical spine ( inconclusive for cancer - could not do a biopsy) disappears on the next Pet scan in August. I’ve had one dot disappear already. We’ll see. Maybe in October if my Pet scans are clear. He will confer with my MO. Meanwhile the MO was very pleased with my response so far. The tumors in the breast , by exam have diminished as well as the nodules on the skin. And my white blood cell count is up so only one injection of Zarxio this weekend. Another wrinkle though, is what I thought were bug bites on my legs ended up as an allergic reaction rash. She thinks it’s from the Trodelvy, so she upped the Benadryl pre meds and steroids pre med (temp) , and I’m also taking over the counter Xyalar and Pepcid, and using a cream she prescribed. Lol goodness it is always something! But the rash is better tonight , so fingers crossed it continues to get better. I thought it was bed bugs . So in a way this is good news. Hope everyone is doing well this evening, it is beastly hot here !

  • luzio19130
    luzio19130 Member Posts: 7
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    funny you wrote now. I'm awake worrying about my PetScan tomorrow. After 7 or 8 infusions of Trodelvy, I took a 6 week "chemo holiday " and tested at my daughter s place by the jersey shore. I took the time off because my quality of life on the Trodelvy, even at the lowest dosage, was poor. I suffered from bad diarrhea and fatigue and shortness of breath, mainly. After 6 weeks I am feeling stronger but not back to normal. So, tomorrow my oncologist expects to have the scan preliminary results by end of day for our appointment. If the scan is good, I will likely restart trodelvy, although I'm not looking forward to it. If the scan is bad, it will be a different conversation and set of decisions. I am scared. Scared of both possibilities. 14 months in, and I'm questioning a lot about the difficult side effects , and poor quality of life, in view of a stage IV diagnosis of an aggressive form of BC. I'm glad you gals are here and can relate to these thoughts.
    I'll keep you posted. Michele

  • rlschaller
    rlschaller Member Posts: 52
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    @luzio19130 I hear you Michele, it is not easy. Pondering the treatments and their effects is such a balancing act. Quality of life is what it’s all about, and doing what is reasonable to maintain a life of meaning filled with love, friends and family. Only you can decide that. Positive thoughts and affirmations, plant based diet, daily exercise, loving connections, and meditation are some things that have helped me. I’m sure your MO suggested remedies for the diarrhea and fatigue already but I know it can be debilitating too. . So sorry , being scared is normal. But we are here for you, whatever works or does not work, we are here for each other.

    I hope your scans are what you most wish them to be. Perhaps your MO will have other drug recommendations, there are many out there.