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Starting chemo February 2020

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Comments

  • morrigan2575
    morrigan2575 Member Posts: 805
    edited February 2020

    "The SD-101 will be injected by needle directly into my tumor and the other one and the taxol will both go in my port."

    Oh this is interesting. I read an article about a study that was done where they injected the Flu Vaccine into tumors to get the bodies immune system to target the cancer cells.

    https://www.sciencedaily.com/releases/2020/01/2001...

    I also read about a study in FL where they have a Cancer vaccine designed to get the body's immune system to attack the cancer.

    https://www.sciencedaily.com/releases/2020/01/2001...

    Keep in mind neither is a "cure" even the Florida study was disease free because she had a bilateral mascetomy. However, I find these studies to be important. Medicine/Science should be looking at better ways to treat and prevent BC instead of the tried (and true) Chemo/Radiation/Surgery.

    Best of luck with your treatment! I really hope the SD-101 does wonders.

  • texasmama
    texasmama Member Posts: 129
    edited February 2020

    ajminn3 and Fab4mom- Sending my best wishes as you begin your infusions tomorrow.

    Morriigan and dysonsphere- Sorry to hear about your side effect. I hope you find relief soon. Thank you for sharing. I find it helpful to have some idea what to expect.

  • morrigan2575
    morrigan2575 Member Posts: 805
    edited February 2020

    The Nurse gave me 2 prescriptions, one is a pill, Diflucan and the other is a mouth wash called Nystatin.

    I started them at 1pm and, i feel 10x better already. My throat stopped hurting and, I can swallow without issues/pain.

    That will teach me to try and wait (figured I could tough it out till my appointment tomorrow).


  • hray1993
    hray1993 Member Posts: 220
    edited February 2020

    Thank you Morrigan. I’m pretty scared about that the SD-101. I wasn’t expecting to have to be injected with anything other than through my port but hopefully it works good. I hate needles though so I’m pretty scared

  • voncloft
    voncloft Member Posts: 13
    edited February 2020

    It is officially Wednesday....my port placement will be put into tomorrow, and TC Chemo will start on Friday.


    4 Sessions, once every 3 weeks......I'm hoping the worst side affect is hair loss....Time will tell.

  • Fab4mom
    Fab4mom Member Posts: 190
    edited February 2020

    ajminn3, today is our day! I woke up at 4amm not on purpose. At 5 I got up and did a few minutes of exercise, and I'm heading to the shower soon. My chemo starts at 8am, and we have to get the kids off to school and now I'm getting dropped off by husband and sick kid and heading in on my own. I have a good friend who is at the end of her journey, coming in for radiation, so she's going to come visit me. And another friend who will come later to sit with me and take me home. The steroids yesterday made me crazy, I was a ball of energy, I got so much done and couldn't sit down. Thankfully, they also gave me something to take at bedtime to relax and sleep, so I was asleep by 10:30.

    I'm nervous but so ready to get this medicine in me. I can see and feel my tumor, and it's definitely growing. I want it to go away!

  • morrigan2575
    morrigan2575 Member Posts: 805
    edited February 2020

    Fab4Mom - Good Luck with your first Chemo!

    Voncloft - Good Luck with your port!

    Still have 2 more weeks before my next infusion but, if the first is indicative my low days are Sun-Tues post infusion (days 4-6).


  • ajminn3
    ajminn3 Member Posts: 284
    edited February 2020

    Fab4Mom- I’m heading in at the same time! I’m sorry your kiddo is sick and your husband can’t stay with you. I’ll be there with you in spirit. I was also up early, despite all my kids “sleeping in” (anytime after 5:30 am counts as sleeping in in my household!). I’m strangely excited to get this started? I figure the sooner I start the sooner it’s all over (or at least I hope). Technically per all my scans, I have no detectable cancer following my BMX, but since I was triple positive with a small spot on a sentinel node I get to do it all! We’ll see how I feel about it all when some SE kick in...praying your day goes well.

    Also praying for everyone else here that have started or are getting ready to start

  • nimmy1976
    nimmy1976 Member Posts: 9
    edited February 2020

    FIrst post - had my first round of TC yesterday, which went way better than I had hoped. No nausea (had Decadron 10 twice a day starting the day before, and 24 mg oral Zofran before infusion started). Was super nervous this whole week since it sounds like people's experiences are so variable, and was sad and mopey the day before chemo, worrying that it would be the last day of me being myself.

    I'm buzzing with crazy Decadron energy (took the PM dose at 5 the night before chemo and couldn't go to bed until 1, so I stayed up and cleaned), and appetite has been great. Hubs kept a list of what I ate during chemo... 3 chocolates, chips, popcorn, a spicy chicken sandwich (that was a mistake, I did get GERD and mild queasiness afterwards), and 3 ice cream bars.

    After chemo, I gardened a little and then walked a mile, then played with my 2 year old for an hour or so until grandparents showed up. Was very tired at 9 but couldn't fall asleep until around midnight (I took my PM Decadron at 4 yesterday)

    Cold capping wasn't as bad as I expected although I had a hard time keeping my feet iced during Taxotere and maybe feel a little tingling in my feet today. Woke up feeling like I had a mild hangover, and a little flushed from Decadron. Hangover symptoms went away with breakfast (Korean seaweed soup from m-i-l, highly recommend it for its viscous texture which is sometimes too much but absolutely perfect to combat dry mouth) and Decadron (going to split today's dose in two, hoping that will reduce the crash). Was advised to take Zofran every eight hours around the clock for at least two days, so am going to do that.

    So appreciate everyone on this board for sharing their experiences, and good luck to everyone who's about the start!

  • ajminn3
    ajminn3 Member Posts: 284
    edited February 2020

    I made it through round 1 today...it was a long day of bloodwork, paperwork, and a 5 hour infusion. I tolerated it well and feel fine right now. Unfortunately I know that’ll change here over the coming days so I’m savoring it. My next infusion will be shorter thankfully. Only 5 more rounds to go

  • texasmama
    texasmama Member Posts: 129
    edited February 2020

    Nimmy1976- Welcome! Thank you for the report. I’m glad to hear you are currently feeling well. I hope that continues.

    Ajminn3- It sounds like an exhausting day! I’m glad you were able to tolerate the infusion. Fingers crossed that you will have minimal side effects.

    Hray1993- I’ll be thinking of you tomorrow. Good luck

  • texasmama
    texasmama Member Posts: 129
    edited February 2020

    Here is the update on my insurance fiasco: I called the insurance again today and talked to a very helpful young woman. She is the first person who noticed that my doctor marked the request as "timely ". Now it has been sent to the expedited group. They can't tell me how long it will take because they are back logged. They process the requests in the order they are received and they claim they are using February 5th as the date they received by request. I have emailed my doctor my husband has contacted the benefits person at work to see if they can do anything.🤞

  • morrigan2575
    morrigan2575 Member Posts: 805
    edited February 2020

    Good Luck TexasMama!

    I spoke with my MO yesterday. I asked him about the Aluminum Free Deodorant, he said if i found one I liked I could move to it but, its not required

    I also asked about taking my Vitamins and Calcium he said to continue.

    It's funny how different Doctors have different requirements. One MO i saw said I can't go the Dentist for a cleaning/checkup. My Doctor said it was OK as long as it wasn't a deep cleaning.

    I think I'm not going to go to the Dentist until I'm done with Chemo. One less Germ factory

  • hray1993
    hray1993 Member Posts: 220
    edited February 2020

    today is the day guys! Starting at 8 I’ll have SD101 which will shove a needle to the middle of my tumor and inject that. Then 11:45 starts another study drug and taxol

  • morrigan2575
    morrigan2575 Member Posts: 805
    edited February 2020

    Best of Luck Hray1993!

  • ajminn3
    ajminn3 Member Posts: 284
    edited February 2020

    Texasmama- ugh insurance. What a pain. As if there's not enough stress with all of this. I hope they move at light speed for you.

    Morrigan- I agree, so interesting to see different opinions on things from MOs! I managed to force myself to the dentist before starting chemo. Embarrassingly enough, I hadn't been in a decade due to severe anxiety about the dentist! I was lucky to have only 2 small cavities to get fixed and everything else was fine. Now I'll be better about it haha. But they did advise (unless something crazy comes up) that I wait until I'm finished with chemo for my next cleaning due to all the germs that come with the mouth.

    Hray1993- good luck today! I'll be sending all my positive energy and strength to you.

    I'm one day out from chemo and still feel fine. Just waiting for that other shoe to drop here...it's a matter of time

  • voncloft
    voncloft Member Posts: 13
    edited February 2020

    Port was put in today..... Chemo is tomorrow. 4 sessions total

  • morrigan2575
    morrigan2575 Member Posts: 805
    edited February 2020

    good luck tomorrow voncloft!

  • Craftylife61
    Craftylife61 Member Posts: 34
    edited February 2020

    Voncloft, Nimmy and Texasmama, sounds like we’re all doing TC instead of AC and Taxol which in a weird way makes me not feel alone! Mine will start the 19th.

    I am so appreciative to everyone for the suggestions for things to get and do.

    In the meantime hubby and I are going a quick trip to Charleston to celebrate our 39th wedding anniversary and his birthday. Got to get out of this house for awhile while I can!

  • texasmama
    texasmama Member Posts: 129
    edited February 2020

    Vincloft- good luck tomorrow!

    Hray1993- I hope all went well for you today.

    Craftylife- I’m so glad you are able to go on this trip and celebrate. Have a fabulous weekend

  • hray1993
    hray1993 Member Posts: 220
    edited February 2020

    chemo day is over! I got SD101 which was injected into my tumor. My oncologist is awesome and numbed it good so I didn’t feel a single thing. Then got another study drug that has a long name. Had to wait on it to be ready for 2 hours after my chemo was supposed to have started. So that set us back 2 hours. Then got taxol. They gave me Benadryl and it’s knocked me out so I slept through the taxol. No weird feelings or side effects yet. Heading home to sleep

  • texasmama
    texasmama Member Posts: 129
    edited February 2020

    Hray1993- I’m glad to hear it went well today.

    Tonight we got an email from the Director of Medical Benefits at my husband’s work. She contacted my insurance and got the new drug approved! She also said that they are going to work with the insurance company to determine the root cause of this mess and see what they can do to improve the process. Hallelujah

  • mnsusan
    mnsusan Member Posts: 139
    edited February 2020

    Things are getting real. I have an ECG this morning (the irony of having a heart test on Valentines Day ❤️), then port on Monday. Chemo education a week from today and my first infusion on Monday, 2/24. I’m just squeaking into the February group. It’s been great to hear everyone’s experiences. I feel much better prepared.

  • dysonsphere
    dysonsphere Member Posts: 134
    edited February 2020

    Good luck to all of you starting soon.

    Today is day 8 for after my first AC infusion. I have been miserable day 6 and 7 with diarrhea. I was so dehydrated I was having some severe kidney pain. thankfully, I had a scheduled IV infusion. They gave some steroids and nausea meds with that and I am feeling human again. I've learned my lesson that if I feel like I'm about to die, I need to ask for some fluids! Also, my white blood count is super low so I can't go out for a few days. One side effect that my care team didn't mention which has caused me some anxiety is burning when you urinate and that this is normal. I've been worried I was getting a UTI. Hopefully it will be all be better from here until my next round!

  • morrigan2575
    morrigan2575 Member Posts: 805
    edited February 2020

    TexasMama - Glad the company stepped in and helped you out. Hopefully you can get it scheduled soon.

    Dysonsphere - Sorry you're having such a rough time with the AC. Hopefully the Taxol will treat you better. Hang in there ❤

    MNSusan - Good Luck with everything

  • ajminn3
    ajminn3 Member Posts: 284
    edited February 2020

    Day 2 post first infusion and I feel fine. Still just waiting for that other shoe to drop...it’s a matter of time I know. I’ll just keep savoring this feeling of normalcy while I can. I’m a little red flushed in the face, but that’s about it so far. I got my period yesterday and that’s been the most annoying thing to happen thus far...so inconvenient.

    Texasmama- glad insurance and the company is moving finally.

    Dysonsphere- sorry to hear about the AC side effects. Hopefully they can be managed and resolved soon. Seems those days appear to be when those SE’s hit from what I’ve read around here. It helps me to be aware of what may be coming. I hope you get some relief soon.


    MNSusan- welcome to the February group my fellow MN friend!

    Hray1993- so glad it went well for you! Hope the SE’s are minimal and you get lots of rest

  • voncloft
    voncloft Member Posts: 13
    edited February 2020

    Doing chemo now.....so far just a weird taste in my mouth... I have losanges to suck on to remedy.

  • nimmy1976
    nimmy1976 Member Posts: 9
    edited February 2020

    Day 4 after 1st round TC, definitely felt a crash last night around 6:30, just as I passed the 12 hour mark after my last dose of Zofran, coinciding with the last of the Decadron wearing off. My husband had to work later than usually and by the time he got home I was laid out on the couch trying to come up with games to play with a toddler that would let me stay lying down under a fluffy blanket (mommy is a mountain and baby has a bulldozer to flatten the mountain; we are bears in a cave eating fish and crabs; mommy sea lion and baby sea lion snuggling...) I'd also only been sleeping about 5 hours a night for the last few nights. Am going to dose Zofran every 12 hours today. Took an Ambien last night and slept better last night, feel better this morning but am definitely a little achy - started Zarxio last night. Appetite is still good but starting to feel a little tingly in the palate.

  • scatteredenergy
    scatteredenergy Member Posts: 320
    edited February 2020

    dysonsphere, the first day I put an alarm for every two hours so I could pee. I know someone online that even did it at night. Get lots of liquids in and pee more often. I'm having a hard time with that because I used to drink water and ice nonstop and now my tastebuds have screwed that up. So I'm trying to find other ways. I made gelatin, I'm eating ice cream, I'm going to make lemonade today, etc. I'm a picky eater so my options are limited lol

  • morrigan2575
    morrigan2575 Member Posts: 805
    edited February 2020

    Stupid Question - Is Day 1 the day of infusion or the day after? 😁

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