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Starting Chemo in April, May, or June 2022

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  • hippmark
    hippmark Member Posts: 92
    edited May 2022
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    sarahmaude, I saw your post and wanted to tell you what I did re: nosebleeds. I had a nosebleed after my first and 4th round of T/C. Buy a saline nasal spray or rinse and use it to moisturize your nasal passages. It worked for me. I am also on a blood thinner due to blood clot in my arm from picc line. I did have a small nosebleed a week after my last chemo (I had stopped using the saline). It did bleed a little more now being on the blood thinner. But I simply got kleenex, stuffed it up my nose and laid back for 5 minutes. It stopped. If you do get one, it will just take a little longer for it to stop, but it will. I used the saline spray 3x a day.

    Glad you had a nice day yesterday!


  • ruthbru
    ruthbru Member Posts: 47,057
    edited May 2022
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    Sounds like a good weekend, sarahmaude. I need to go out and buy some watermelon!

  • sarahmaude
    sarahmaude Member Posts: 338
    edited May 2022
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    hippmark, I'll go pick up some saline nose spray. That's easy enough! Nosebleeds. Just remembered a story. When I was in first grade, I got a lot of them. I'm sure it was my seasonal allergies plus lack of modern antihistamines. Once, the teacher left the room and said to the class, "under no circumstances are you to leave your seats." She must have been gone 10 minutes or so during which my nose started to bleed. Even then, I think I knew better, but just decided to sit there and watch it drip onto the table I shared with another 7 students. When she returned, I remember the puddle being larger than a dinner plate. She of course was horrified, and said something about that wasn't what she meant.

    Of course that was way before the time we worried about blood borne pathogens. It's no wonder she recommended that my mother put me in private school the following year. I have a lot of experience stopping nosebleeds, but I would sure prefer not to have one.

    Ruthbru, yes on the watermelon! It wasn't bad yesterday, and in a month or two, it's going to be even better.

  • alleycat5
    alleycat5 Member Posts: 33
    edited May 2022
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    Thanks for all the info katg. It's really helpful to hear from someone who's "been there."

    SarahMaude, keep counting those blessings! I've had nosebleeds in the past too. Not really regular or consistent. Usually in the winter when the air is dry. I live in the south so humidity keeps them away usually in the summer. I did ask the doctor about them today at my chemo treatment. She said it could have been from the treatment or it could have been me just work in the yard and breathing pollen and dust/dirt. It only lasted a couple of minutes. She did mention using the saline as Hippmark did. Also said a humidifier can be helpful.

    My hemoglobin and platelets and all my bloodwork looked good. I had gained a pound.. I'm pretty skinny, my BMI was underweight, so weight loss is a concern for me. I've been working really hard to gain weight in the couple of weeks before starting chemo, and I gained about 9 pounds. My oncologist said since I didn't have any real side effects during the first week, that should be a good predictor and indicator that I may tolerate the chemo well for the rest of the time and may have few side effects. Plus I'm on just Taxol with the Herceptin, and since it's weekly, the dosing is smaller. She said that tends to be easier on the body than some of the other regimens. I told her I'm just thankful for the good days and if the bad ones come, I'll just stop and rest and do what I need to to care for myself. I told my husband that as long as the good days outnumber the bad days, I can deal with that and call it a win. I've felt really good today and hoping and praying it continues this week too!


  • katg
    katg Member Posts: 214
    edited May 2022
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    Good to see your update. I think looking at each day as it unfolds. Checking the current symport. Trying foods.....doing all you did. This one day at a time, puts the less then great days where they belong. You will hopefully have many good days.

    Praying that cold cap works!! I love success.

  • sarahmaude
    sarahmaude Member Posts: 338
    edited May 2022
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    Sunday update.

    So I’m still recovering from my Taxotere nadir. I ended up neutropenia with a still undetermined infection. Felt really bad on Tuesday and worse on Wednesday. Called and they had me come early for labs so they could give me fluids. I had blood cultures (they simultaneously drew blood from each arm into two sample tubes), and still have no results. They put me on antibiotics and I feel better, so I hope I’m on track to be ready for treatment number 2.

    I spent time today making gloves to hold the extra ice packs I got for icing my hands during my next 3 treatments. They aren’t perfectly made, but they were “free” as I used old yoga pants to make them. Thanks to sweet friend Beginagain22 I’ve got a set of ice socks for half of my treatment next time, and I’ll just use their ice buckets for the other half. I think it will be much more bearable.

    I worked through a laundry backlog. While folding. I watched Florence Foster Jenkins with Meryl Streep and Hugh Grant. I found it to be entertaining, very well acted, and I was interested in how Florence was so beloved that her circle of friends and supporters allowed her to believe she could sing well. I was glad that there was at least a moment we got to hear Meryl’s true voice. I think there are some good life lessons in the story, but I’m to busy with other thoughts to think about it.

    Hope all of you are also making it through. Chemo isn’t for sissies. I’ve had so much character building this year I’m expecting to inspire a new Marvel superhero.

  • margecandoit
    margecandoit Member Posts: 146
    edited May 2022
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    Hi all!! I am starting chemo on Thursday and I am little scared. Read all your post and thanks for the helpful hints. It's nice to know that I am not so alone. I meet with my nurse tomorrow to get more information. Thanks for everyone sharing.
  • sarahmaude
    sarahmaude Member Posts: 338
    edited May 2022
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    Good luck Marge! Do you know what you will be receiving? We’re here to support you!

  • margecandoit
    margecandoit Member Posts: 146
    edited May 2022
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    Thanks!! Hope you are having a good day. Think the first is going to be Adriamycin and cydophosphandle not sure on spelling. Just found out last week that chemo was going to be first. Seemto be happening so quick.

  • sarahmaude
    sarahmaude Member Posts: 338
    edited May 2022
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    Marge, I was close to the same. Seemed like I waited a long time for a decision then was I scheduled for my first treatment 8 days after my OncoType results were discussed.

    Good luck on Thursday! I'm scheduled for treatment 2 next Wednesday. I'm on Taxotere and Cyclophosphamide. For me the actual treatment wasn't bad, and my premedication kept me feeling good the next few days. It seems that we all have somewhat different responses and side effect schedules.

    My day was good. Able to work all day long, so that was helpful. I knew this week would be a busy and important work week so I asked my doctor if I should feel well enough to get through it. She thought so, and even after my crash last week, I feel like it’s going to be doable.

    You’ve got this!

  • alleycat5
    alleycat5 Member Posts: 33
    edited May 2022
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    Hi Marge and welcome to the group no one wants to be a part of but so thankful it's available for us! I was pretty terrified of chemo. My original diagnosis was DCIS and was only getting surgery and radiation. Then first lumpectomy they found it was invasive and HER2+ so chemo was quickly thrown in. I'm getting Herceptin and chemo (Taxol) weekly for 12 weeks.

    I had my 3rd treatment today.. I'm 1/4 of the way finished!!! YAY!!!

    I have really had no side effects at all, at least no nausea or GI issues. No real hair loss. Just a couple of days last week that I was tired, but I had two major projects I was in charge of at work and spent two days running around and working long hours with those, so I think I just wore myself out. I had a lot of energy the end of the week and into the weekend. Like lots and lots. I have Rheumatoid Arthritis, so I know what it's like to be constantly fatigued and hurting. I wonder if my body just sees that as the baseline on how I feel, so now that I'm off the RA meds and just taking the chemo steroids, it's thinking this is no big deal and I may be able to power through?

    I will say though I spend a lot of time kind of waiting for the other shoe to drop. Wondering if today is the day that it all starts and I have a really bad day. I also find planning a challenge since I do understand that chemo is cumulative and I'm afraid if I plan or schedule something, what if that's when I'm sick? I do try to make everything as tentative as I can. Plus, for things I really don't want to do, I just say no and blame it on the chemo :)

  • moderators
    moderators Posts: 8,091
    edited May 2022
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    Welcome, margecandoit! We're all here for you.

    The Mods

  • margecandoit
    margecandoit Member Posts: 146
    edited May 2022
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    You guys are so sweet. Got a lot of info from the nurse today she was very helpful. She did say I will lose my hair. That’s kinda tough but will make it thought.

    I got my results last week from my mammaprint which was high risk and the blueprint said basal type. So instead of surgery first they said to go with chemo first. So jumping in feet first on Thursday.

    I like the idea blame things I don’t want to do on chemo very good suggestions. Hope you guys are having a good day.

  • alleycat5
    alleycat5 Member Posts: 33
    edited May 2022
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    Wanted to check in on everyone to see how things are going?

    For me the shoe finally dropped. I've had a good run of feeling pretty good for the first few weeks of chemo. But after chemo #4 of my 12 weekly treatments on Monday, I felt terrible yesterday. Didn't really get out of the bed. Fatigue - that I keep trying to explain to everyone around me isn't just being tired and nausea. Didn't get out for my daily walk or to water my plants. Still not great today but I did get out and walk this afternoon and I've been able to eat a bit. I'm still feeling fortunate that the good days lasted as long as they did and I knew this was cumulative and was likely coming. My hair is still hanging in there, but a bit thinner. Probably still have 90% of it. Had followup with surgeon yesterday who said not to get my hopes up and that I will likely lose it.

    But the good news, I'm 1/3 of the way through!

  • sarahmaude
    sarahmaude Member Posts: 338
    edited May 2022
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    Alleycat, I just had treatment #2 on Wednesday. I’m 4 weeks into treatment. Also experiencing incredible fatigue. Slept til 10 am yesterday, got my neulasta shot at 1:30. There was a line to check in at Dr and I actually was feeling faint before I got to the front of the line. I had eaten, not nauseous, so that wasn’t it. Husband and I did some food shopping, I unloaded groceries, and crashed for another 2 hours.

    Had enough energy to warm up a pre made meal, and cook some frozen purple hull peas. After that, nothing left.

    Unlike you, I’m losing a lot of hair despite cold capping. I’ve still got 75%, but my scalp around my part is visibly thin. I’m somewhat blaming the Arimidex I had been taking for two months prior to chemo.

    Today, I think I feel a little more energetic. We’ll see. I hope you feel better soon. You have months on your treatment. I’ve got two treatments left. Then a month of radiation. I should be done with active treatment by Labor Day. Back on Arimidex, but time for healing. An end in sight is helpful.

  • margecandoit
    margecandoit Member Posts: 146
    edited May 2022
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    Alleycat sorry that the shoe had finally dropped. I was really tried after my first treatment but I am starting to feel like myself again. Unfortunately my second treatment is Thursday so I guess I will feel tried again.

    So with treatments being cumulative it takes longer to feel normal again? My first set of treatment is every 14 days and my second is weekly. I guess with weekly there no feeling normal again. I am glad you guys are seeing some positivity that is alway helpful. Hope you all have a great holiday weekend

  • thebee
    thebee Member Posts: 3
    edited May 2022
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    Hello, this is my first post. I will be starting my 1st AC on 6/9/22, followed by taxol. Everyone's posts here have been very helpful in preparing myself for this upcoming part of the cancer adventure. My question (the 1st of many probably!) is: anyone going through chemo with your T/E not yet completely filled? Mine has only 1 fill done @ time of MX, which was on 5/4. The area around the surgery is so tender still, & I'm worried that, what with the T/E port on one side, and the chemo port on the other side of my chest and the general strong nature of the AC, that the wound healing may be delayed. Any thoughts or wisdom?

  • sarahmaude
    sarahmaude Member Posts: 338
    edited May 2022
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    thebee, welcome to the chemo adventure club. I’m sorry you had to join, but I’m glad you found us

    I’m not going to be very helpful in answering your question about port healing and tissue expander ports, since I have none of those, but I can say that a lot of healing can occur in 10 days. I know that many people get ports and start chemo shortly afterwards, so healing power must be good enough, or it wouldn’t be a standard of care.

    I’m using my own veins for my chemo, and that includes weekly blood draws. Even though I was neutropenic last cycle, had low platelets, and I’m on blood thinners, my IV and blood draw sites have all healed well.

    I would also make sure you specifically ask your surgeon and medical oncologist your questions. A lot of patient portals enable us to leave written messages that they can answer during office hours.

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
    edited May 2022
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    thebee - I had my chemo port placed on the same day as my first AC infusion. It may have slowed healing, but I didn’t have any problems except some discomfort that eventually went away. Make sure to drink lots of liquids!

  • maggiehopley
    maggiehopley Member Posts: 112
    edited May 2022
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    I had my first infusion of weekly taxol, plus herceptin and perjeta, last Wednesday. Minor side effects: one hot flash, one episode of rumbly tummy/loose stool, some wooziness from the compazine, and intermittant drippy nose from the herceptin. It went as smoothly as possible, but I find that I am just as anxious for tomorrow's second infusion (taxol only) as I was for the first. Not sure why I feel this way!

  • moderators
    moderators Posts: 8,091
    edited May 2022
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    Hi maggiehopley, we are sorry that you find yourself in this position, but we are happy that you have joined breastcancer.org. We hope that you can find comfort and support from other members on our site. We want to let you know that we have a virtual meetup for members who are currently undergoing treatment for breast cancer. The information can be found below.

    Sending you positive vibes and well wishes for tomorrow's infusion Medicating

    --The Mods

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  • sarahmaude
    sarahmaude Member Posts: 338
    edited June 2022
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    maggiehopely, I know what you mean about anxiety every time! I tend to be pretty even tempered, but not so much with chemo. I’m glad your side effects last time were manageable.

    I get the same drugs each time, but my side effects were a little different this time. Even though I had low white blood cell counts last time, everything else was relatively easy. I think that the relatively aspect is important for me. I was so surprised when the NP said I did well my first cycle. Then I went back and read everything that could have happened but didn’t. It’s helped me this time to reframe my expectations.

    I hope your next treatment also goes well. As the moderators mentioned, I’m sorry you have to be here, but I’m glad you are with us.

  • snozzie
    snozzie Member Posts: 1
    edited June 2022
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    Hi, I came upon this site trying to gather as much information as I could. I see it is US based which might have some bearing on treatment, etc., I have had my first chemo session, carboplatin and docetaxel. My diagnosis was 43mm Grade 3. ERneg(0) HER2 neg. Lumpectomy on left breast onApril 8, 2022. Port a cath inserted on May 5, 2022. Chemo started May 19.

    I did have the ice cap but have decided that I will not use it again, it was one of the most unpleasant things I have endured and do not need any more stress. I look upon the probable loss of hair as an adventure!

    any information about care of skin and nails will be very useful. Or any other form of help, experiences etc., Sometimes I feel as though there is just not enough out there so this site might just be my saviour.

    Susie

  • sarahmaude
    sarahmaude Member Posts: 338
    edited June 2022
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    Hi Snozzie, your docetaxel is one of the drugs I’m taking. Look up Taxotere and permanent alopecia before you swear off the cold cap again. I too was ready to just ditch my hair until my radiation oncologist let me know that there is more of a risk of permanent hair loss than I knew about. It is totally not fun, so, I’m with you on giving it up!

    For nails I’m using this Opi clear polish https://www.amazon.com/dp/B00178TVXG?psc=1&ref=ppx_yo2ov_dt_b_product_details and this Onsen cuticle cream https://www.amazon.com/dp/B08VV26W43?psc=1&ref=ppx_yo2ov_dt_b_product_details between treatments. During the one hour Taxotere/docetaxel infusion I’m icing my hands and feet. The facility provides big bags of crushed ice in those plastic hospital wash tubs. The icing is painful, but keeping my nails, and more important preventing neuropathy is worth an hour of pain. Wearing socks on my hands and feet during icing helps considerably. I think adding some aloe and vitamin e to nails is another good choice. My medical oncologist has orders for the hands and feet icing in my treatment protocol I don’t even have to ask for it

    For my skin, I’ve purchased several items, but this Utter Cream is my favorite:https://www.amazon.com/dp/B00COOHFOO?psc=1&ref=ppx_yo2ov_dt_b_product_details It’s cheap, non greasy and I just slather it everywhere after bathing or when dressing if I’m not bathing at the time.

    There is a great post here on what to buy for chemotherapy; I’ll bump it up so it will be any for you to find. I adapted it for me and could post my updated list in my starting thread if anyone is interested. I’m a research nerd, so I don’t want to impose myself on anyone else.

  • maggiehopley
    maggiehopley Member Posts: 112
    edited June 2022
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    I had my 2nd infusion this week. I was so anxious my blood pressure was 150/90- yikes! It went fine except I gave myself frostbite in my pinky finger which was very painful. I bought some cotton gloves to wear inside my mittens for next time. It's Friday now and I'm feeling very woozy today like I did last Friday. I thought it was the compazine last week but I didn't need it this week, so it is the taxol. No driving for me today. Next week I will not have to take steroids at home the night before.

  • sarahmaude
    sarahmaude Member Posts: 338
    edited June 2022
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    maggiehopely, isn’t the chemo tango fun? I’ve been interested how my side effects are both similar for each cycle and different. I have had my steroids intravenously at the start of my infusion. It’s followed by a nice cocktail of anti nausea meds. In both cycles, this has enabled me to avoid nausea, vomiting, or diarrhea. First cycle not even a shadow of nausea. This time I had the faintest hint of nausea, but by staying hydrated and nibbling on gentle food, it passed without needing any meds. Constipation on the other hand, I’m glad my MO told me to get ahead of it. My GI system has been overtaken by chemotherapy. I’m so grateful for colace and miralax.

    It’s funny how we try to blame all the side effects on one of the supportive meds, or even a virus or allergies. I’ve resigned myself to the NP statement that most of my symptoms are from chemo itself. Even my stuffy nose. She said they’ve had patients who never had sinus issues develop chronic sinusitis on chemo. And my cough, that’s also likely from chemo. I just hope the cough and runny nose stop after chemo is done.

    I hope you have a great weekend!

  • margecandoit
    margecandoit Member Posts: 146
    edited June 2022
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    Second treatment done and starting to wake up. It really makes me tried. It’s been a hard weekend with being tried and my hair is starting to fall out and the Dr said I need to do a Pet Scan cause there a spot on my lung that concerning. I get so anxious too when going to the Dr. Seems like there alway something else. How do you guys stay positive?

  • sarahmaude
    sarahmaude Member Posts: 338
    edited June 2022
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    MargeCanDoIt, I'm sorry for your fatigue and about your hair falling out. I hope the PET scan is clear. You've got a lot going on right now.

    So, people who read my posts may think I'm great at staying positive. You asked how to stay positive. I'm just going to put this out there, I can't. What I can do is remind myself that in my case, my bad days are temporary. My fatigue will pass. If I'm grumpy, it is usually over something situational, and my bad mood and reaction to that situation will zoom back into perspective when I feel better.

    For example, I'm cold capping. Even though I chose to do so because of the risk of permanent alopecia due to Taxotere, I have seen quite a few examples of people who kept all their hair. I went through a lot of my life feeling like I was one of the lucky people. Lately, not so much. But that didn't stop me from thinking that sure, I'll keep my hair. 2 weeks ago, I filled my bathroom waste basket with hair. I had such a pit in my stomach. In a way, just having to tell everyone who knows I'm cold capping that I'm losing my hair ticked me off. I know it's just hair. I know it will come back. I know now that the big shed stopped, and I still look pretty much like myself. But, that weekend, I was just angry. Simultaneously, my husband angered me by leaving a ladder in our laundry room that blocked the door…I couldn't even get a laundry basket through. Then, my daughter yelled at me over something silly, and I yelled back. I'd been down all weekend, and no one at home even asked about me. I was getting ready to go through my second chemo cycle and I felt so angry, and sad, and completely lacking my normal good spirits. The days in the cycle I should have felt better, I had a horrible runny nose and yucky cough. I lost it. Hyperventilating. Crying. Wanted to just leave the house and be away from everyone. My husband, who is really an awesome guy, got in the car and drove me all over town looking for a better hairnet. Never found one, but as it was just the two of us and I looked around, I realized I could make something that would stay on better though cold cap changes. When I got home, I made my magic hairnet. Solving one of my many issues helped. Gradually I returned to center. I made myself write something marginally funny here. I read a book that was light and cheerful. I forced myself to mark things off my to do list. I talked to a friend about her problems and didn't even mention mine. I stayed less than my best for a few days, but I was better. After chemo, I was looking forward to that day-after burst of energy I had the first time. Instead, I was exhausted. But, I just decided to let myself be exhausted. And it passed. I had a few better days, then spent another 3-4 wiped out from low blood counts. Yesterday and today I feel good. My hair is pretty thin on top, but two cute headbands I ordered from Etsy came in the mail on Saturday. I wore one of them on some Teams meetings today, and I'm okay with how I look.

    The crazy wall of text is just one of the examples of how my low days can be now. On the other hand, I've had a great day at work today. Finished a few things, laughed with co-workers, still have energy. I feel some of my sense of humor around the edges, and I know that I will once again be able to help others laugh in spite of a bad day. I am well enough today to remember that even on my worst days, there is, as SerenitySTAT's Thin Slices of Joy Thread says, something of beauty every day. Two weekends ago, it was clean dishes after 7 Lowes trips, 2 days, 10+ hours of home repair work, and lots of words of frustration. This weekend, it was finally feeling well enough to clear out the laundry room (ladder moved by my daughter), and making three great quilt blocks.

    Wow. Don't feel bad not reading this. It's a crazy rambling mess. But, my summary is, we don't have to “stay positive." We should become practiced at reminding ourselves that most of our bad stuff will pass. I have gotten a lot of support here, knowing I'm not the only “unlucky" cancer girl experiencing my symptoms or something similar. We should allow ourselves time to rest, rage, sulk, whine, moan, vent, and then start searching for a thin slice of joy. For me, once I find one, it's easier to find the next. I have come to realize that chemo is more like a roller coaster than I expected. So I know that the drugs are going to drive how I feel at times. But in time, I'll pass that terrible climb, the bumpy drop, and enjoy a period where the vehicle moves smoothly even as it approaches another hill. My chemo ride is now halfway through. Knowing this particular set of treatments will end is something else I make myself remember.

    Hugs. You Can Do It!


    edit to add link to Thin Slices of Joy: https://community.breastcancer.org/forum/7/topics/850199

  • margecandoit
    margecandoit Member Posts: 146
    edited June 2022
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    Sarahmaude Wow that was a lot of information. I greatly appreciate all you had to say. I don’t feel all alon in my feels and ok not to alway put on the brave face. Thanks for the hope and a good view of the ups and downs that I think we all may be going through.

  • sarahmaude
    sarahmaude Member Posts: 338
    edited June 2022
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    So I’ve completed my third round of chemo today. Still cold capping for another hour and 45 minutes. It’s been a long day! Treatment center was an hour late taking us back. The young oncology nurse who was assigned to me said, where is your port? Uh, I don’t have one. I’m using my veins. She looks skeptically at my bruised arm and tiny veins. I tell her, “I know I’ve got tricky veins, if you are not totally confident find someone else.” She made one painful attempt, and found someone else. That nurse found a two great candidates. Took the best and said that my valves were working well, too well, and nothing would flow. Stick number 3 was the charm. Everything else was delightfully routine.

    At my pre treatment consult yesterday I had a couple of positive things come up. First, my current Xarelto prescription fill is the final one. I can stop when it’s gone. Second, I’ve got my radiology consult scheduled for the same week as my final treatment. I should be ready to go with that on July 25. And third, the doctor is looking into possibly getting me started with Signatera screening for circulating tumor cells. I hadn’t heard of it before, but they start with analyzing a piece of my original tumor and a blood sample. They identity 16 genes that define my tumor. It’s personalized to my tumor characteristics. Then they compare my blood sample to see if any of those tumor cells are present. In a clinical trial, this test saw CTCs two full years before clinical signs of distant recurrence. This should give us a chance to treat before those tumor cells can grow into something more threatening. For me, that is very appealing as I’m pretty worried about my grade 3 ER+ PR- tumor. Lack of useful monitoring has been one of my worries.

    Also, a quick cold capping update: after a lot of shedding toward the end of cycle 1, I’ve maintained almost everything since. The top is thin, but not obviously so to people who don’t know me. My MO who initially discouraged me from cold capping was pretty impressed with my results when she saw me.

    How is everyone else holding up? I’m ready for this rickety wooden roller coaster ride to return to the station. But I’m also grateful for being given the chance for knocking out the remnants of my serial killer Norman Bates. My Seal team is ferreting out all those terrorist cells.