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Chemo Starting September 2018

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  • Cupoftea18
    Cupoftea18 Member Posts: 6
    edited August 2018
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    Actually, I am starting Taxol and Herceptin on Wednesday August 29th. Will be given benedryl & a steroid in it. Tomorrow the port surgery will be done. I am so not comfortable with beginning this process. All the side effects, then all the pills, etc. to combat side effects is overwhelming. I do not feel prepared although I have read everything and asked the medical staff many questions. Emotionally, it doesn"t seem possible that a human has to go through all of this to get "well".

  • wanderweg
    wanderweg Member Posts: 487
    edited August 2018
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    @cupoftea - I'm so there with you about not feeling ready. It feels insane to pump your body full of poison to get healthy. I hope your port surgery went well and will be thinking about you Wednesday. My port surgery is Wednesday, chemo starts Friday.

  • JNKK
    JNKK Member Posts: 68
    edited August 2018
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    I will be starting 4x TC on September 3. It is so surreal.... I can't believe that this is happening. I am already done with radiation then to find out that I scored a 24 on the Oncotype test. Yes, my first MO didn't send my tumor out for testing until I questioned my treatment plan. Then when he told me that I need chemo without any compassion, I was furious with him. I asked him if I could get a second opinion from one of his colleagues, that's when he "fired" me. I am glad that I moved on from him. I honestly didn't know that I could switch physicians. I thought the team of doctor that I am assigned to is it! I have two young kids, age 8 and 5. My 5 year old daughter told my husband tonight that she is not sure what she can call me after I lose my hair... She said maybe she will call me "bald mommy". As funny as it was, it also made me sad. I thought I can skip the chemo and move on to Tamoxifen, but nope, not so fast, I am not that lucky! I have been reading about side effects and all the drugs to take to help with the side effects, but I feel like I have no clue what is what anymore... Needless to say I am ill prepared.

  • wanderweg
    wanderweg Member Posts: 487
    edited August 2018
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    @JNKK - My tumor didn't get sent off in a timely way so there was a month delay and I didn't find out until almost 8 weeks after my mastectomy that my oncotype score was 38. Both my surgeon and oncologist had thought I wouldn't need chemo. My oncologist was unkind and dismissive each time I met with him, wouldn't really answer any of my questions, and had no patience at all with my needle fears. I asked for a port and he refused. That's when I went for a second opinion and switched to a much kinder oncologist who went over my results thoroughly and set up a port placement for me (Wednesday). My kids are older so it's a little easier for me in terms of their reactions, although one son sat and cried with me when I got the news that I'd have to have chemo. He said he'll shave my head when it's time. I'm sorry you're having to deal with this with such young kids. That's hard.

  • Cupoftea18
    Cupoftea18 Member Posts: 6
    edited August 2018
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    wanderweg, hoping your port surgery goes well on Wednesday. Mine is over now. I was very anxious, since I had a horrible reaction to propofel during the lumpectomy. Talked with the anesthesist and he finally guesstimated what had caused it, but I was still fearful it would happen again. but they gave me a med that totally relaxed me. Icing the area right now, I forgot to when I arrived home. Had a 3:30 pm surgery yesterday and was released about 6:15 pm. Then went to have a small steak. Now to start Taxol once a week for 12 weekly infusions on Wed. Also, will have an infusion for Herceptin every three weeks for one year. Yikes, so many concerns for while I'm on these and future. I do have a MO that seems compassionate and competent. Will go to this afternoon to try on more wigs. People act like this is such an exciting thing to do. I find it depressing and sad. Need to get some soft caps and scarves. Seems like here you can express how you really feel and not like you have to keep the happy face on all the time.

  • JNKK
    JNKK Member Posts: 68
    edited August 2018
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    @wanderweg, I hope you don't mind me asking but why did you chose to do mastectomy when your tumor/stage was so small and not to mention no node involved?

    @Tigerlily, Good luck tomorrow for the first round of TC!

    @cupoftea18, I know exactly what you are talking about. I feel like this is the only place where others really know what I am going through. Every time when someone ask me how I am doing, my answer is always, "I am okay". But really, I want to say I am scared out of my mind! \

    My doctor told me that I don't need have a port to put it since I am only doing it 4 times, I am kinda glad for that.

  • wanderweg
    wanderweg Member Posts: 487
    edited August 2018
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    @JNKK - Well, you can't know there is no node involvement until the surgery. But I chose it because I watched my mother do a lumpectomy, chemo and radiation and then have a recurrence five years later, and go through a mastectomy and reconstruction at that time. And as it turned out, my cancer is wildly aggressive (which is why I'm doing chemo). I know longevity rates are similar for mastectomy vs. lumpectomy/radiation, but I had off-the-charts dense tissue and I wanted to short-circuit the process and not have to keep going back for mammograms and possible biopsies. I don't think there's a "right" choice, jus whichever choice works for you. And I asked for a port even though it's only four rounds because I have a pretty serious needle phobia!

  • wanderweg
    wanderweg Member Posts: 487
    edited August 2018
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    @cupoftea - I'm glad it went well! The idea of conscious sedation scares me - I take it you couldn't feel anything? I like the freedom of not having to pretend to be brave all the time here, too.

  • kjlcheval
    kjlcheval Member Posts: 3
    edited August 2018
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    My port is scheduled for tomorrow, 8/30, hospital just called for my "portion".  I feel bad for the people on the phone who have to deal with my minor meltdowns...plus it's that time of the month...I have a question on icing...I'm not cold capping..but I'm a saddlemaker and music director(guitar) at our church and I am worried about the neuropathy...I understand the how, but my question is when? TCHP & Neulasta for 6 sessions...Thank you ladies!

  • pcranky
    pcranky Member Posts: 81
    edited August 2018
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    At the suggestion of someone in the Weekly Taxol group I went and toured the infusion center today.

    The NP from my MO's office accompanied me and introduced me to everyone who works there. Showed me where the ice and snacks are.

    Told me about what i can have done at the same time (acupuncture and massage).

    It was a very helpful experience to put my mind at ease, and I highly recommend doing so if you can.

  • specialk
    specialk Member Posts: 9,221
    edited August 2018
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    Stopping by to say hello to you - and to see if anything me has questions I could help answer.

    kjlcheval - the taxane drug is what usually causes nail and neuropathy issues - I iced both hands and feet. I received my drugs in order (T, then C, then H - this was before P was used) after infused pre-meds, and started icing 10 minutes before the Taxotere was hooked up, and continued until about 10 minutes after it was done.

  • piksie
    piksie Member Posts: 132
    edited August 2018
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    I'm official. 18/18 lymph nodes, so I'm doing Dose-dense AC+T starting 9/12. Last infusion is 12/19; just in time to feel crappy for Christmas. But next Christmas is going to ROCK!!!!

    Question: MO said no need to ice hands and feet on this regimen. Do any of you with Taxol plan to ice? I'm not doing the cold cap but I am concerned about neuropathy.

    Warrior On!

    Sheri


  • Tigerlily318
    Tigerlily318 Member Posts: 115
    edited August 2018
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    kjlcheval, et all....I am in the chair as we speak. So I am cold capping and have iced boots and mitts. We are doing the “C” first and the nurse said to start the cold on the hands and feet 30 min before the taxotere starts. I had to have my IV in my hand so may just do the other hand and conduct an experiment.

    All has been ok except the first 10 min of the cap which was awful pain. I should have had more to eat, smoothie did cut it. Advil, sandwich, and time and it is tolerable. Also painted my nails black to help with nails and have organic tea tree oil.

    FYI, no shower until neulasta does it’s thing, so for me tomorrow night...27 hours after I finish infusions today. I am going home with the self administering patch. Helpful for planning purposes.

    Otherwise so far so good

  • wanderweg
    wanderweg Member Posts: 487
    edited August 2018
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    I got my port implanted today. It's sore and I'm having some trouble turning my head, but it's tolerable. The nurse commented on my small veins and said she thought my decision to get a port was a good one for me, and the breast surgeon concurred. I felt well enough after I got home to go out for dinner, but then hit a wall. So now a day and a half until my first round.

    @ tigerlily - glad it seems to have gone well.

  • Tigerlily318
    Tigerlily318 Member Posts: 115
    edited August 2018
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    Hi all, I am home and feel pretty good. I have a little face selling, probably from the steroids. I have a terrible case of the hiccups, but that is it. Again, it is all trial and error, but I would suggest taking the stuff they offer, especially anything to take the edge off (and that is so not me!). And eat, have seen a lot about fasting, but I needed the food and am not nauseous at all (knock on wood). Only was during the initials cold cap issue and I think more food wouldn’t have helped. Had tomato broth and crackers for dinner. Good luck to all - I am a lot more ease after today and hope that helps you all and you have the same experience. Oh, Iwas able yo chose accupuncture or massage during treatment. It is free and not guaranteed but helpful to get on their schedule ahead of time. If you have that open, I would be proactive about it. Really helped.

  • Tigerlily318
    Tigerlily318 Member Posts: 115
    edited August 2018
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    @pcranky, that is awesome, just saw your post. I did not do it ahead of time and think that is a great idea. Good luck!!

  • pcranky
    pcranky Member Posts: 81
    edited August 2018
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    Tigerlilly - Thank you so much! and congrats on putting day 1 behind you!

  • pcranky
    pcranky Member Posts: 81
    edited August 2018
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    Thank you SpecialK!

  • JNKK
    JNKK Member Posts: 68
    edited August 2018
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    Tigerlily, thank you for the update. I hope I will have an easy time too on Monday.

  • WC3
    WC3 Member Posts: 658
    edited August 2018
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    Tigerlily318:

    I have heard that it might not be good for people take fish oil supplements or eat fatty fish around the time of chemo infusions because (in mice) it was shown to convey a protective effect to the cancerous cells against the chemotherapy, particularly platinum based chemotherapies.



  • MollyinTO
    MollyinTO Member Posts: 1
    edited August 2018
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    Hi all. I had a lumpectomy and lymph node (x3) removal on July 31 and just got back my Oncotype test with a score of 34 so scheduled to start chemo on September 13, followed by radiation and hormone therapy.

    I'm scheduled for four cycles (every two weeks) of AC and then four cycles of Paclitaxel.

    What I really want to hear, from anyone who's done this kind of regimen, is whether I'm at all being realistic in the following plan. If I do my treatments on Thursday, then take Friday and the weekend to recover, I hope to be able to work the full week on non-treatment weeks. Is that overly optimistic?

    Several people have told me they've been able to more-or-less work through their chemo, but others have told me not a chance.

    I'm trying really hard not to freak out.

  • Tigerlily318
    Tigerlily318 Member Posts: 115
    edited August 2018
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    Hi WC3: I have heard the same, but I am not on platinum drugs. That's the advice on the Sloan Memorial Kettering site (avoid if on platinum) and I cleared with the pharmacist and oncologist where I am in Boston, so think I am good. It is hard though, to know what to do during chemo....

    Hi MollyinTO: Unfortunately I don't think you'll know until you know. And I know it becomes cumulative. It also depends on the cocktail and your job and I know you are going to be on something stronger than what I'm on. I have the ability to talk to my sister-in-law and a good friend who both did the same TC I am on at the same place but even they were different. I can tell you that today I have some minor side effects but am sitting here working and went for a long walk this morning. I have a little GERD, when I have to pee I really have to pee (but I'm also pounding water), I can't shower until tonight, and I have a bad taste in my mouth and a little cramping but that is it. I'm in my house working and really am ok. I get the Neulasta shot tonight and stop steroids after this afternoon so I expect to "crash" but we'll see. I am very hopeful for a normal two weeks coming up but am going to work from home next week until I know more....will post over the weekend. It's the unknown that is tough but so far I'm in good shape. I'd be comfortable driving, etc. Hang in there! 

    JNKK: good luck on Monday! No Labor Day for you? Enjoy the weekend! 


  • monlee
    monlee Member Posts: 5
    edited August 2018
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    Hi everyone. I am seeing my oncologist September 4 and chemo had previously been recommended. I am so grateful to have someone to share notes through this experience.

    Tigerlily318 - I believe I will also be TC x 4. Neuropathy is my greatest fear. Do they supply you with the icing for your hands and feet or did you bring your own? If you brought your own, where did you buy these?

  • Tigerlily318
    Tigerlily318 Member Posts: 115
    edited August 2018
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    Hi monlee...you could bring plastic bags and I am sure that the hospital will have ice, but I bought the following:

    On the first one, you need two:

    https://www.amazon.com/gp/aw/d/B01A9XTTHC?psc=1&ref=yo_pop_mb_pd_title

    And will paste the foot ones in the next post. I thought they were all good things to have in the house anyway - especially after my husband’s recent unexplained gout 😞



  • Tigerlily318
    Tigerlily318 Member Posts: 115
    edited August 2018
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    https://www.amazon.com/gp/aw/d/B003L4WOKG?psc=1&ref=yo_pop_mb_pd_title

    Make sure if you don’t have a port you ask to do the infusion in your arm. I ended it doing only one hand because of that, but so far nothing in either hands or feet. Not sure when it would show up. I put them both in a small cooler after freezing overnight and filled cooler with bags of ice. Worked fine, cooler is a LUNCH bag

  • beeline
    beeline Member Posts: 193
    edited August 2018
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    Molly, I don't have an answer for you but am in a similar boat hoping/needing to work through chemo. From some other threads I've read people have said days 3-5 were the worst for SE. One person took a week off after their first one, and then just 1-2 days for the ones after that. I'm thinking I might try something like that if I can swing it.

  • Sadlynew2018
    Sadlynew2018 Member Posts: 173
    edited September 2018
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    hello ladies. I’m new here and probably jumping the gun pretty heavily. I’m 41 and was diagnosed earlier this month (details below). This afternoon, I found out my onco score was 27. Ugh. No plans as of yet as to when my treatment will start. I do know that I’m so scared of the SEs. We have 3 small kids. I’m trying so hard to be strong but I don’t know what to expect nor do I know what medicine I will have. It’s only been 22 days since diagnosis and it’s been the worst storm of my life. I’m trying so hard to be positive. In the hopes that I begin treatment in September, I wanted to step in and say hello. I certainly want it to start soon so it can be over quickly. I wish I knew what it would be (chemical) and for how long. Hopefully I will know soon. Hugs to everyone. I hate this disease.
  • JNKK
    JNKK Member Posts: 68
    edited September 2018
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    sadlynew, I am so sorry that you are here, but we are all here for one reason - to kick cancer’s ass! I am too zero node involved, I have been doing lots of research leading up to my decision to have chemotherapy. Here is the link for you to read and decide what regimen to go for. https://www.breastcancer.org/research-news/chemo-w-anthracycline-better-than-without

    • For women with hormone-receptor-positive disease with no cancer in the lymph nodes (node negative), the TC regimen reduced recurrence risk by about 2.5% more than the TaxAC regimen.
    Be sure to find a doctor that you are comfortable with and willing to work with you.

    Ps. I am 44 and have two little kids at home too. Trying to be brave and have a game face on, but it is okay to cry in front of them too

  • wanderweg
    wanderweg Member Posts: 487
    edited September 2018
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    First round down yesterday! I feel pretty good so far, but understand the side effects kick in later. I'm trying to drink lots and lots of water (not my usual). My port was just put in Wednesday, so it was still a little tender, but not terrible. I had no reaction at all to the taxotere so that's good. For the four hours, I ate, listened to music and slept. They had to wake me when I as done. A friend had suggested I ask them to add ativan to the infusion and that really helped relax me. Anyone else here getting the neulasta onpro patch to deliver neulasta the next day? It's really weird to see it blinking it's little green light through my short. I'm trying not to worry too much ahead about when it infuses me this evening - I've heard stories about bone pain.

    @Sadlynew - Welcome, and sorry you have to be here. It looks like we have similar situations, except my oncotype was 38. I'm on taxotere and cytoxan for four rounds, which I think is the standard protocol in cases like this. We're not far ahead of you on this thread, but happy to support and answer what we can.

  • EZrunner
    EZrunner Member Posts: 4
    edited September 2018
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    Hi everyone, I will be joining you this month. I'm scheduled to have my port placed on Wednesday and the first AC the next day. I feel like I'm walking around in a bad B movie but can't find the remote to turn it off or switch channels. Things have been moving fast since my second biopsy. Almost everyone important to me has been told. I started telling close aqaintances, but I am tired of talking about my boobs, answering the same questions, and seeing concern / worry.

    I'm not cold capping. After hearing that it feels like the worst ice cream headache I know there is no way I'd last 5 minutes. Although I'm telling my kids and everyone else that hair grows and it will be nice to have a break from my high maintenance locks, I’m really lying to everyone. My long, red, curly hair and my boobs are my two best physical features and both will be gone soon. This sucks. I need to jump on the wig shopping but can't seem to muster the motivation. Part of me wants to go crazy with the wigs and have all the fun styles and colors I can’t do with my own hair, but the sensible side says I should just get something that is close to my pre- BC style. I’m really interested in hearing what everyone else doing