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Starting Chemo May 2021

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  • txlorelei
    txlorelei Member Posts: 68
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    That’s scary STJA16! Hope the next time goes better!

  • AlwaysMeC
    AlwaysMeC Member Posts: 107
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    STJA16, how very scary! I hope your family is okay too. Sometimes we forget that they are almost equally as emotionally involved and stressed. There's another lady in one of the recent chemo threads that had a similar reaction. She came to surrounded by doctors and nurses, so while not common, hopefully it's a protocol they have experience and are trained for. I recall the lady from the thread continued treatment after they adjusted the plan, without a recurrence. Hopefully, your new plan works out without any hiccups. I will be thinking of you on Tuesday and sending positive vibes your way.

  • STJA16
    STJA16 Member Posts: 55
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    AlwaysMeC, that is encouraging to hear about her experience. Big relief.

    My pressure finally went down before bedtime last night and looks good this morning. Will check pressure again after i am a bit more acrive. I feel much better but not yet back to normal. Thanks everyone.

  • Primavera
    Primavera Member Posts: 1
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    So scary! I knew when I got Taxol that something like this could happen; had read about it in forums. I also had read that the way to fix it was slow infusion. And I was happy when I talked to my oncologist the week before and she said, even before I asked, that automatically, the first two infusions are very slow, double the time, and to expect to be there the whole day. She said they never do these at regular speed the first two times, and if they went OK at the beginning, they would keep on adjusting the speed to find a good one for me. Everything went OK and I was on normal speed soon enough.

    I keep on wondering why don't they "test" this way all the time instead of scaring patients so much when these reactions happen.

  • HopeHeal
    HopeHeal Member Posts: 137
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    STJA16 may I ask which chemo drugs you are taking? I wasn't told about the grapefruit.

  • STJA16
    STJA16 Member Posts: 55
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    Primavera, I will be asking a ton of questions tomorrow. I also wondered why they dont start everyone off slow.

  • blmike
    blmike Member Posts: 195
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    Just another update in case someone is wondering about Week 2. We seem to be settling into a little chemo rhythm: chemo on Friday, Saturday is not too bad but Polly is increasingly fatigued by the end of the day, Sunday and Monday are pretty rough, but she's forced herself to eat things such as oatmeal, scrambled eggs, chicken noodle soup, pudding, peanut butter crackers, etc. By Tuesday morning, she feels ALMOST back to normal, but is still pretty tired.

    So, in summary: days 2 and 3 after chemo are pretty rough in terms of fatigue and loss of appetite. Thankfully, no nausea or diarrhea (at least so far). Polly did have some pretty bad mouth sores this week, and she's using Orajel to treat those. Any other ideas would be appreciated. Hope the rest of the May 2021 chemo crew are doing OK.

  • AlwaysMeC
    AlwaysMeC Member Posts: 107
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    BLMike, those foods are my staples too. Oatmeal every morning! I read on one of the threads that some use Biotene or Magic Mouthwash for sores. If you search both, it will probably bring up the comments.

    STJA16, how did everything go today?

  • annsoptera
    annsoptera Member Posts: 27
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    BLMike, I had a real issue with mouth sores. I rinsed with baking soda & salt mixed in warm water, which helped a bit, but my MO's office gave me a prescription mouth rise with topical steroids and that helped enormously and quickly. So Polly may want to mention it to her treatment team. I hope she's feeling better today!

  • blmike
    blmike Member Posts: 195
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    Thanks all for the advice about mouth sores, but now we've got bigger problems. Polly's white blood cells are "dangerously low" so she's got to postpone this week's chemo. Hopefully, she can get it rescheduled for next week subject to next week's blood work. Always something!

  • Cackle21
    Cackle21 Member Posts: 1
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    Thanks everyone for all your helpful posts; I start chemo on Friday (taxotere and cytoxan) so I'm reading and taking notes from this and other app boards in preparation. Mike, I hope Polly's wbc count comes back upquickly and she avoids infection!

    I have a question about icing hands and feet during chemo. I have Reynaud's disease so my extremities are very sensitive to cold (holding a cold drink, for example, turns my fingers white, then various other colors). I don't know that they can tolerate prolonged exposure to cold like that. Is anyone else facing the same situation? If so, how are you dealing with it?

    Thanks

  • AlwaysMeC
    AlwaysMeC Member Posts: 107
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    Hi Cackle21, I am not sensitive to cold like you, but I do notice that the cold capping I use stops circulating cold air every twenty minutes or so, and the cap warms up a little before the cold air starts up again. Maybe you can take your hands and feet out every now and then to sort of mimick that pattern. I don't know if it will affect your results, but I thought it was interesting that the cap didn't stay the same temp the whole time.

  • STJA16
    STJA16 Member Posts: 55
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    All, good to read your updates. After my scary start I was able to do a successful cycle on Tuesday on TC. It was very slow, about 6 hours. Went back day 2 for fluids, nausea meds and Neulasta. Went back day 3 Thursday for more fluids and nausea meds. I felt tired each day. I got winded talking. Light nausea managed by the meds I had at home. Today is day 4 for me. I feel OK. Slept well. No major symptoms. I do have a taste in my mouth which I associate as metallic so am using bamboo utensils now. My nutritionist said to use biotene in the morning and at night. Then during the day 3 to 4 times, pretty much after you use the bathroom to alternate 2 homemade rinse and lubricant. Baking soda rinse: 1 teaspoon b soda, 3/4 salt in 1 quart water / rinse do not swallow. Glycerin lubricant: 1 teaspoon glycerin, 1 quart water / rinse do not swallow. I got quart bottles with a pump from Amazon and premixed the rinse and they are in the bathroom ready with plastic cups. Now I only have to remember to use them.

  • STJA16
    STJA16 Member Posts: 55
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    Cackle21, I agree with AlwaysMeC on the cold packs. I did use mine. I wore socks so they did not feel so cold. They also did not last long so I switched to a second set half way through. It was not freezing. I also had gloves on my hands before i put on the cold mitts. That helped so they did not freeze. I do have sensitive fingers and toes and they turn blue when cold. It was manageable. I did take of the hands every 15 mins for a few mins but the feet were ok. I had 2 sets of each as recommended by Mike earlier in this chat.

  • annsoptera
    annsoptera Member Posts: 27
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    STJA16: Thanks so much for the update! I'm glad you were able to do the TC on Tuesday as planned and that your team has been so proactive in terms of managing any potential reactions. I'm glad to hear you're not feeling too bad today and hopefully your energy will return soon.

    Cackle21: Welcome to the group! I iced my hands and feet during Taxotere, but like STJA16, I had to take my hands out every now and then (my feet were fine). There are other ways to try to minimize the risks of peripheral neuropathy (such as Vit B and some amino acids) so your treatment team may have some suggestions for you if you find the icing too difficult.

    BLMike: I'm sorry to hear about Polly's WBC. I hope that's improving and she can get the next treatment scheduled soon. I also hope she's feeling better.

    I'm at Day 17 after TC #1. I feel completely fine, but I've noticed that my hair is really dry and the shedding has started, which is a bit unnerving even if I was expecting it.

    I hope everyone has a good weekend.

  • txlorelei
    txlorelei Member Posts: 68
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    I had my first Taxol treatment today. About 5 minutes into the infusion, I started feeling tight in the chest. The nurse gave me a big dose of Benadryl and extended the treatment length to 3 hours. That went fine. He recommended I do a 2 hour infusion next week.

    I didn’t have enough cold packs to last the whole 3 hours today, but I should have enough for 2 next week.

    Other than feeling tired, I’m doing ok now. I hope it lasts.

    Good luck to everyone else here! Heart

  • blmike
    blmike Member Posts: 195
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    Thanks for the good wishes on Polly's WBC. She got bloodwork today and it was back up to 2.5. Still low but much better than where it was. She has additional blood work scheduled for next Wednesday and her next chemo is tentatively scheduled for next Friday (assuming the WBC is OK).

    Like you, AnnSOptera, Polly started seeing the first real clumps of hair come out today. As she ran her hand through her hair, it just came out. Yes, she also found it a little unnerving even knowing it was coming. She got online at Headcovers Unlimited and ordered a couple of head coverings. The adventure continues!

    So far so good TXLorelei. Good luck going forward.

  • STJA16
    STJA16 Member Posts: 55
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    BLMike, i ordered from headcovers and it took over 30 days. Hopefully your items are faster. I emailed several tines asking for updates. May want to look somewhere else if Polly needs right away.

    I scheduled a hair cut for next weekend. I have shoulder length hair so this will be difficult. By then i will be day 11. My twins are graduating from college and have my daughter's ceremony that weekend and will need to wear my wig for the first time. Not sure how i will feel about all these emotions. Already went to my sons graduation last week before chemo so hoping i will feel ok to attend my daughter's.

  • STJA16
    STJA16 Member Posts: 55
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    TXLorelei, that's the feeling i had also after 4 mins but passed out. They responded quickly for you as well. They did give me more benadryl with the second try and slowed down the infusuon. Hlad it all worked out for you.

  • blmike
    blmike Member Posts: 195
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    Yikes STJA16! 30 days is horrible. She almost paid the FedEx 2 day shipping rate, but we figured a week or so would be fine. It never occurred to us it might be over 30 days. I suppose we'd better have a Plan B handy. Thanks for the heads up.

  • Shan2021
    Shan2021 Member Posts: 3
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    Good morning all

    I just found this site and and anxiously looking for people who have experienced similar treatment to me. I am starting my second round of Taxotere and Cytoxan next week. The first chemo treatment was fine but then I had a reaction to the Udenyca which was awful ( we will not use it this time). I am VERY blessed and my cancer was caught extremely early so I will only be doing 4 cycles of treatment. I am also doing penguin cold capping, which 18 days into treatment and I'm the only one who can see that my hair has thinned. I would love to chat And be connected with others who have used these two drugs, with this 21 day cycle and cold caps?

  • STJA16
    STJA16 Member Posts: 55
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    Shan2021, welcome. Sorry to meet under these circumstances but we are in this together. I am day 6 TC. Hope you did not have bad symptoms to overcome. I have not heard of Udenyca. What is that for? I did have Neulasta on day 2 a blood count boosting shot. Came with mild bone pain today. There is a Going through chemo zoom call on Tuesdays at 1PM ET hosted by the moderators. Go to the main page and it is listed under the zoom meet ups. Those have been very helpful for me. When: Every Tuesday 01:00 PM Eastern Time (US and Canada)

    Register in advance for this meeting (if you register once you will not need to register for future meetings):

    https://us02web.zoom.us/meeting/register/tZEvc-uurzgvHNyvhpw-l0KPkwjlKN_KbOeC

  • blmike
    blmike Member Posts: 195
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    Shan2021 -- Sorry you're here, but just to reiterate STJA16's point. The Zoom call can be pretty helpful in getting and sharing information from other chemo patients who are pretty much going through the same things you are.

  • annsoptera
    annsoptera Member Posts: 27
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    Welcome Shan2021. I'm in a very similar spot to yours. I have my second round of TC on Wednesday of this week. You can read my earlier posts here about how the first round went. I don't know if Udenyca works in a similar way as Neulasta, but I had good luck controlling bone pain with Claritin if your doctor decides to try that this time around. I'm also cold capping (Paxman), and I've had a lot of shedding over the past few days. Like you, my thinning hair is not very obvious to others so far (no big bald patches), but overall my hair is quite a mess due to the dryness, shedding, and lack of styling product. I think it's too soon to tell how well the scalp cooling is working for me. From what I can tell, the outcome really varies a lot from person to person, even with the same regimen.

    I've also tuned in for a few of the Tuesday chemo zoom calls and found them to be helpful.

    STJA16 - I hope the bone pain isn't too bad and that you're otherwise managing well on Day 6.

  • Shan2021
    Shan2021 Member Posts: 3
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    thank you for the information, Udenyca is the same as Nuelasta. From what I’m told most people do not have significant side effects, just mild aches and pains, however my white blood cells went crazy by day 3 and I was miserable to say the least. I so glad to hear you are not having much discomfort. I would love to join the zoom call, I’m very excited to speak with people dealing with the same thing. I was so clueless prior to my diagnosis, honestly I didn’t even know there were different types of breast cancer. I’m experiencing the same thing with my hair, it’s a mess but I’m happy it’s still there!

  • Shan2021
    Shan2021 Member Posts: 3
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    thank you I will be there

  • STJA16
    STJA16 Member Posts: 55
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    Shan2021, we were all clueless on breast cancer. It's not just you. Lots to learn in a short time and life changing decisions to make. But we are all stronger today armed with knowledge to help ourselves and others to come. Learning more every day.

  • Girlbond007
    Girlbond007 Member Posts: 3
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    Hi all,

    Joining the group. Started TCHP beginning May. Will be doing 6 cycles. Second round started yesterday. Had GI issues, diarrhea, During round 2 since the perjeta dose was halved. Hoping to do better thi time. I am here to get support and offer any support that I can.

    Thank

  • moderators
    moderators Posts: 8,185
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    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.

  • AlwaysMeC
    AlwaysMeC Member Posts: 107
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    Hi Girlbond007, sorry you have to join our group. I am on TCHP as well - just had my second one last Thursday. It's been rough and I'm extremely fatigued. I hope you have an easier time.