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Anyone starting Chemotherapy in March 2023?

sheilzinla
sheilzinla Member Posts: 30

Hi all,

I am new to this club that no one wanted to join. I am 51, premenopausal and was diagnosed with IDC stage 1, 1.1 cm, Grade 3 tumor, no lymph node involvement. Sadly, my Oncotype was 29, so chemo it is for me!!! I will be getting 4 rounds of TC (docetaxel & cyclophosphamide) every three weeks. I'll also try to cold cap using Penguin.

Is anyone going this same TC regimen? I was going to get a port, but then chickened out. My MO said a port isn't needed with 4 infusions, so I will try it and see how my veins go.

Also, what happens the day after your infusions?? I noticed that my Chemo start date is March 14th where it's listed as 3-4 hours. BUT then on my Mychart there's another chemo appointment the next day March 15th for 1 hr. No one ever mentioned doing chemo 2 days in a row, and with cold capping I am concerned. I have a call to my MO office to find out. Wondering if anyone could tell me what that 2nd appointment could potentially be.

It doesn't look like my insurance covers Neulasta, so I am really wondering/worried about what my medical team is planning.

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Comments

  • mandy23
    mandy23 Member Posts: 92

    Hi sheilzinia!

    Sorry you have to join those of us doing chemo, but we are here to support you. I am in the February 2023 group. If you don't get many responses here, feel free to join us. Also, you might like to look in the Chemotherapy forum for the thread "Anyone on Just Taxotere and Cytoxzan". There are a few of us active there. In addition, under the "Managing Side Effects of Breast Cancer .... Treatment forum there is a "Cold Cap Users Past and Present" thread that might be helpful. (I am also on both of those.) My chemo regimen is the same as yours and I go for my 2nd infusion on the 8th. My guess is that the 2nd appointment is for a Neupogen shot. This helps boost your white blood cells. I have heard it done in 3 different ways:

    1) You get the wearable Neulasta where it auto administers a shot the next day (which I have)

    2) You self admiinister a shot.

    3) You got back to the clinic the next day for a shot.

    Maybe you are going back to the clinic if your insurance didn't cover the wearable device?

    I had a couple of ripples with my 1st infusion, but I am doing pretty good now other than fatigue, so you will get through this! Join us on the other threads and do some reading there. It should help you see what others are doing.

    Best of luck!

  • sheilzinla
    sheilzinla Member Posts: 30

    Thanks, Mandy23! Glad you are doing well after your 1st TC infusion. Are you cold capping manually or with machine and/or doing anything for your hands and feet? How long is your day on TC?

    I have been lurking on that TC thread and it's super informative. And I may just join the lovely ladies in the February group to see how things are going for all of you. It is great to have a supportive community on here!

  • mandy23
    mandy23 Member Posts: 92

    Hi sheilzinia -

    Yes. I am cold-capping using Paxman, which is a scalp cooling machine that they plug me into. I have found the nurses at my clinic are pretty hands-off the whole capping thing except to plug you in and out. Fortunately, my husband is able to assist me with getting the cap on as well as possible. I have really thin hair to begin with, so even if I lose my hair, I am hoping to preserve the hair follicles and allow them to quickly regrow hair.

    I am icing my hands and feet during Taxotere using Suzzipad Cold Therapy that I purchased on Amazon. It has several gel ices that you freeze and put into their socks and mittens. I bring them to my clinic in a small cooler. I also suck on ice chips for both T and C to avoid mouth sores. So far, so good on that! I only had a small sore throat after infusion #1 and no mouth sores! I did sort of feel like a popsicle though! Happy

    My infusion day got to be longer than anticipated since I had a reaction to the T and they had to stop, give me more drugs, help me to calm down and restart it more slowly. It then did go fine. Also, due to the cold capping, I had to stay 2 hours when done with the T and C. So, it was a long day. We got there probably about 8 am and got home about 3:30 pm (and I am only 15 minutes from my clinic). I am hoping with infusion #2 next week things will go better and maybe the day will be a bit shorter!

    Now you are going through the waiting part.....that's agonizing too. Spend the time getting things done around the house and plan on feeling somewhat under the weather for about a week. I was glad to see that after the first week, I started to recover more quickly and now am in my 'almost normal' week before the next one!

  • sheilzinla
    sheilzinla Member Posts: 30

    Hi Mandy, I am glad you didn't have too much trouble with your first infusion! I have also bought the Suzzipad Cold Therapy socks & mittens from Amazon! I returned the mittens and I think I'll just get an extrapair of their socks. I might find it easier to hold frozen water bottles in my hands than those mittens! They were hard to deal with. How often did you need to change your socks to keep your feet cold?

    Thanks for the tip on chewing ice chips. I will definitely try that. I also got a bunch of Biotene mouthwash to help with mouth issues.

    Yes, the waiting now is the hardest part. I've spent the last few days making soups and freezing food for when I am going thru treatment. I live alone and my sister will only be here for the 1st week. Hoping I don't have too many SEs!

    Good luck on your next round!! You'll be halfway thru before I even start.

  • mandy23
    mandy23 Member Posts: 92

    Hi sheilzinia -

    I just had the one set of socks and mittens. I decided the socks stayed pretty cold even if they weren't frozen and with my feet being normally cold anyway, I decided to call it 'good'. The mitts I used like oven mitts, keeping them not tightly cinched, but open enough that I could pull my hand out in order to feed myself ice chips. Yes, I forgot to mention that I am also rinsing nightly with Biotene.

    For me, the side effects were the worst from about days 4-8 and after that there was marked improvement. I'm doing pretty well now and anticipating my 2nd infusion on Wednesday.

  • sheilzinla
    sheilzinla Member Posts: 30

    Good luck on your 2nd infusion!! You will be halfway done by the time I start TC on March 14th. I will be holding frozen water bottles instead of the cold mittens. Since I don't have a port, the nurses will be doing my IV in my right hand so will have to keep that free. My hands are always cold, so I figure holding onto frozen bottles during Taxotere should hopefully work.

    I am getting nervous about my Penguin cold capping. Crossing fingers I don't lose too much hair. Right now its long & thick and I wear it in a top bun. It will be strange to wear my hair down for months but I will do whatever I need to do to save my hair follicles!

  • redrover
    redrover Member Posts: 3

    Hi everyone. I'm starting Chemotherapy next week and would love to support others in this or the Feb chemo group. I have DCIS / IDC and positive lymph nodes. Staged at 2B. I had a bilateral mastectomy in February, a mediPort implanted last week and ready to start my first session on the 15th. My treatment plan will be AC every 2wks for a total of 8 wks, followed by Paclitaxel weekly for 12 wks. Yes, a long journey, but I am going in with the most positive approach as possible. I am cutting my hair down since it will most likely fall out. I already have an affinity for wigs, but I've also purchased a few scarfs/caps for those days where I just prefer not to worry about a wig. It would be great to engage in this community to learn, share and receive support!!

  • sheilzinla
    sheilzinla Member Posts: 30

    @redrover, Welcome to the club no one wanted to join! I'll be with you starting my 4 rounds of TC next Tuesday, 3/14. I had Stage 1 tumor that was 1.1 cm, but apparently aggressive enough for an Oncotype 29 and grade 3. . .so prepping for whatever is next the upcoming 3 months! I'll be here with you during this process so you won't have to go thru it alone.

    I am cold capping but also working to accept that I may have to chop off my long hair and get a pixie. Or wear hats/scarves/wigs. We shall see how my scalp reacts to cold capping. All the unknowns are the most stressful part of this experience!

  • redrover
    redrover Member Posts: 3

    Hi all. I had my first AC session yesterday (1 of 4). All went well and fingers crossed for any potential side effects to come. I took my Sizzie cold pack but they told me to save them for the Taxol treatments. I sucked on ice chips during a portion of the treatment. Took the 1 nausea pill prescribed and will follow over the next 3 nights as well. But other than that, nothing else (except Biotene rinse at night). I was told that some patients have side effect after round 3 of treatment. Going back next weeks for lab work, then the following week for round #2 of AC. Hope everyone had a great rest of the week and weekend!

  • sheilzinla
    sheilzinla Member Posts: 30

    @redrover, congrats on making it thru your 1st infusion!! I hope the rest of your experience remains uneventful.

    I am almost 48 hrs past my 1st round of TC. I was fortunate to have a great nurse find my vein on 1st try, so IV went in no problem. I iced my hands & feet during 75 min of Taxotere, and the cold on my feet was excrutiating. Also did Penguin cold cap for 7 hrs, and tolerated ok but have minor frostbite on my hairline.

    Minor nausea and feeling rundown after yesterdays Neulasta shot. Also feeling bone pain but manageable with Claritin. I walked about 2 miles yesterday & hope to get out to walk today.


    I think drinking 32 oz of water with each meal, 4 times a day has really helped me!!

    Wishing you all a smooth, safe road ahead!

  • ruby216
    ruby216 Member Posts: 22

    Hi! I'm starting chemo on 3/27/23. I had SMX on 2/9/23, stage 1 triple positive IDC and DCIS. I'll have 12 weekly infusions of Taxol and Herceptin. I'm getting my port this week on 3/22.

    It would be great to be in touch with others going through chemo at the same time!



  • sheilzinla
    sheilzinla Member Posts: 30

    @ruby216 Welcome and sorry you have to join us on this journey! I am six days out from my 1st infusion of TC. So far, it hasn't been too bad, although the Neulasta shot and subsequent bone pain was pretty awful from Days 3-5. Today is ok after I got the greenlight from my MO that I can take Advil to help with the pain.

    I hope all goes well with your port installation and your 1st infusion. I opted out of getting a port since my MO said it wouldn't be necessary with 4 rounds of TC. I have three more to go, so hopefully my veins will cooperate!

    Wishing you all the best.

  • redrover
    redrover Member Posts: 3

    @ruby216, Hi there. Welcome to our small group. Happy to support you on this journey. I got my port on 3/6 and started my AC session on 3/15 (1 of 4). Then I will have 12 weekly sessions of Taxol. After my chemo session, no problems of side effects until yesterday (day 4) when I experienced a bit of nausea from food being cooked in the house. After taking the Ondansetron 8mg, it passed and I was able to eat for the rest of the day. My taste buds are a bit off and food doesn't taste exactly right, but that's okay for now. Good luck with your port insertion and chemo later this month!

  • ruby216
    ruby216 Member Posts: 22

    Hi Sheilzinla and Redrover- thank you for responding. I'm sorry, too, that we are in this club together. Hopefully we can all support each other during chemo.

  • towens319
    towens319 Member Posts: 1

    Hi all I am starting my Chemo on March 30th. I am doing six rounds every three weeks. I am getting my port this week Thursday. I am also going to have my appointment this Wednesday with my oncologist to get all my information about my chemo. I am not thrilled about having chemo again. My son is getting married in November and I am upset that I will be losing my hair, eyebrows, and eyelashes. Would love to have some people to e going through this with.

  • sheilzinla
    sheilzinla Member Posts: 30

    @towens319 I am sorry you have to do chemo again. Was this a recurrence of breast cancer or did you have another form with your previous round? It sucks so much to have control taken away from our bodies!!

    Have you considered cold capping? I am on Day 7 from my 1st TC infusion and cold capping with Penguin. Its too soon to say how its working, but I was fortunate to get a subsidy for it from HairtoStay.org. You may want to check them out and see if you are eligible to apply. It reduces the rental cost significantly.

    Good luck with your port and 1st round. I hope both go smoothly and are uneventful!

  • greenbean2468
    greenbean2468 Member Posts: 18

    towens319: I can relate to your concern about an upcoming wedding. I just finished my 6th and last round of TCHP. I used the dignicap cooling cap and while I lost probably 50% of my hair, I still have most of my eyebrows, all eyelashes, and enough bangs and back area of hair to peek out from a hat. I was surprised the cold cap somehow kept me from losing my eyelashes. My nephew gets married this summer so I will be looking for a cute hat to wear.

    Good luck with your chemo. I thought the four months would never pass but it actually went by pretty fast. It wasn't as bad as I thought it would be. I said to myself often, this too shall pass. And it did. Take good care of yourself through it all.

  • iris2022
    iris2022 Member Posts: 10
    edited March 2023

    HI everyone - I, too, am joining this club. I start the first of 12 weekly Taxol and Herceptin treatments on Monday, 3/27. I had port put in place last week. I won't be cold capping, but will be icing my hands and feet. I'm honestly just ready to get started, as strange as it sounds.

    Best wishes to all!

  • ruby216
    ruby216 Member Posts: 22
    edited March 2023

    Hi Iris,

    I had my port placement yesterday. It's really sore today. I wish I had it put in last week because I'm worried it'll still feel tender for chemo on Monday. Let's touch base after our twinning treatments on Monday! Good luck to you! I hope all goes smoothly.


  • sheilzinla
    sheilzinla Member Posts: 30
    edited March 2023

    Hi Iris, Welcome! I hope your first round goes smoothly. I am on Day 10 after my 1st Round of TC. Feeling pretty good & just walked 2 miles. It will be a bumpy road but we can all get thru this!!

  • jh40
    jh40 Member Posts: 139
    edited March 2023

    Hi all - just wanted to drop in and offer some encouragement. I was diagnosed in May last year, triple positive. I had a single mastectomy. I started weekly Taxol + Trazimera (biosimilar to Herceptin) in August and finished this past November. I had a hell of a time in the beginning but things got more manageable after they took me off the steroids.

    I iced my hands and feet during Taxol and I kept my nails, though they did split at the tops. My toe nails are still very discolored. But none of them lifted. I also avoided neuropathy in my hands and feet. I can't recommend icing enough for those on Taxol.

    I remember reading others chemo experiences when I first started. Everyone seemed so much tougher than me. I never imagined I could finish but I did, and you all will too! People used to tell me that I'm stronger than I think I am but I never believed them. Looking back, they were right. And the same goes for all of you. It's very tough; one of the toughest things I think anyone has to go through. But you will make it! Hugs to all of you!

  • ruby216
    ruby216 Member Posts: 22
    edited March 2023

    Jh40,

    Thank you so much for sharing your experience. It really helps to hear from someone who has been through this! I have been on the fence about icing because my Oncologist said there are not studies to back it up. There is also the theory that icing would restrict the chemo drugs from reaching my extremities - but also no studies to back this up. I will say that so far, anecdotally, I haven't talked with anyone who iced and got neuropathy, but I have talked to several who didn't ice and got it. Ugh! What to do??

    Are you still getting Trazimera every 3 weeks? Are you feeling well now?

    Thanks again for sharing your experience. It all starts for me and several others on this thread next week!


  • sheilzinla
    sheilzinla Member Posts: 30
    edited March 2023

    Welcome to all the newbies in this thread!! I hope you find that after you do your first round the stress subsides a bit!! I am now on Day 11 from my 1st TC infusion. I feel good. Had horrible pain from Neulasta side effects for a few days, but feeling better & better after Day 7. Now I am waiting for the "big shed", despite cold capping with Penguin. I hear it starts before the 2nd TC infusion so the next 10 days should be interesting.

    My oncologist said she is willing to have me skip Neulasta next time if I want to. The cost estimate from my hospital blew my mind!! For ONE shot, it was over $52,000!! My insurance (which is decent) would supposedly pay $51,000, leaving my out of pocket cost as $1,300 EACH SHOT. That's insane!! Since Neulasta is what gave me all the horrible side effects, I am thinking of opting out. It would be $5200 for the full course just with that shot!! The only way I would continue is if there was a way to bring the cost down. I did find that there's an AMGEN subsidy that I qualify for (no income limit), so if my hospital can figure that part out, I will do it. Getting sick is not only physically exhausting but financially exhausting too!!

  • specialk
    specialk Member Posts: 9,211
    edited March 2023

    sheilzinla - I think there was an error on the amount posted by your center for your Neulasta - a quick google check shows the cash price for Neulasta costing $6,417.99 (source is the Neulasta website) - so I am thinking someone added a zero somewhere and the actual cost is $5,200 per injection - a volume price break because hospitals and cancer centers buy so many doses at once, rather than $52,000. I had six Neulasta injections and did not ever see an amount like that, and I also participated in a Her2+ clinical trial and got a number of GM-CSF injections (basically Neulasta) and the trial would have been cost prohibitive if the injection was more than $50K per unit. Not saying you should have Neulasta if you don't want it, or maybe don't need it, but I think your decision should be made with accurate info. I wouldn't want you to skip it if you really do need it!

  • sheilzinla
    sheilzinla Member Posts: 30
    edited March 2023

    @specialk Thanks for the info. I just spoke to the Estimate Department at my hospital, and they explained that the $52,000 is the "hospital charge", but they are only allowed to charge insurance the "allowable rate", which is $6,700. So with my insurance, my out of pocket will still be $1,300 per shot. What a scam. American healthcare system is so broken, it makes me sick. For four rounds of TC, $5,200 in Neulasta shots is crazy.

  • iris2022
    iris2022 Member Posts: 10
    edited March 2023

    sheilzinla - I'm so glad that you can skip the neulasta shot...that's a big out of pocket charge! I hope that you do well without it and congrats on being 1/4 done with your TC!!

    jh40 - Thank you for your positive encouragement and congrats on being done with your treatment! I hope that you are feeling well. I'm also back and forth on icing my hands and feet, so this was helpful for sure.

    ruby - my doctor mentioned the icing to me, but the nurse practitioner that I met with for my "chemo class" was a bit lukewarm on it. I have the socks and will give it a try, and will just hold frozen water bottles so that my hands are free. We'll see how it goes! Are you ready for Monday??! Wouldn't it be so funny if it turned out we were at the same place? :) How is your port feeling?

    towens - how is your port feeling?

    specialk - I've read a ton of your posts, and they have been so helpful, so I just want to thank you for all of your input. I'm sure I can speak for all when I say that the time that you spend on these boards is so much apprecated!

  • lavina
    lavina Member Posts: 3
    edited March 2023

    Hi your reply seemed so helpful but I do have a few questions. I start chemo in the 5th of April and though I had BC 10 years ago thanks to my Oncotype I got to skip chemo and did radiation instead. This time though it’s on my other breast and due to Her2 positive I have to do one round of chemo once a week with Paclitaxel for 12 weeks and the Herceptin once in 3 weeks for a year. Im super scared especially to loose my hair did my Microblading yesterday but my oncologist advises me against the cold capping. im also super worried about the neuropathy part and since you mentioned that could you give me some tips on how to handle that please? It would be of great help

  • lavina
    lavina Member Posts: 3
    edited March 2023

    Hi Ruby I’m on the same treatment as you taxol every week though for 12 weeks and Herceptin once every three weeks getting my port put in on the 29th and then my 1 session on the 5th of April. Have you decided to go with the capping? My Onc told me that he wouldn’t suggest it because he’s had a patient that did and had a recurrence on the head or some such thing. And either ways it’s not a 100 percent chance that you can save your hair. So stressed about the side effects. Since you will begin before me would appreciate your input please.

    Goodluck on your treatment

    Stay strong

    Lavina

  • maggiehopley
    maggiehopley Member Posts: 97
    edited March 2023

    Hi Lavinia. I did the chemo regimen that you are starting, Taxol weekly for 12 weeks, and I had Perjeta added to the Herceptin. I started last May. Please do not be worried about the side effects! At my center they gave me pepcid, a steroid, and Benadryl as premeds. The first two weeks I also had oral steroid pills which I took at home- those made it hard to sleep- but that was discontinued at week 3. I iced my hands and feet during the taxol portion only (not before and after as some people do), and had almost no neuropathy. I got a tiny bit of numbness in 2 fingers on my left hand and some minor tingling in my toes and it all went away as soon as treatment was done. I did not cold cap. My hair loss was very gradual and I started wearing a hat about week 9, then it started to grow immediately after finishing. I did have a few days each week where I felt pretty queasy but no real nausea, and some foods tasted bad. I ate a lot of ice cream! My biggest side effect was fatigue. I assume you will be continuing with Herceptin after the Taxol is finished and I had no side effects at all with that.

  • ruby216
    ruby216 Member Posts: 22
    edited March 2023

    Iris- My port, who I have named Portia is pretty uncomfortable still. She's pretty yucky looking. I can kind of see the tube in my neck and it grosses me out. I have been told I'll get used to her. I can't wear any kind of bra just yet because my skin is really sore. I wish I had her put in with a bit more healing time before chemo. Two friends who have been through chemo recommended EMLA numbing cream. I asked my oncologist about it and she called in a RX. I'm supposed to put a glob of cream on 30 min before my appointment on Monday. Maybe you still have time to get some? How's your port?