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Apparently I Am "Just Diagnosed." :(

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Comments

  • lw422
    lw422 Member Posts: 1,417
    edited February 2021

    Hey Jana! I'm happy to "see" you tonight. Thanks for the info; I'm actually feeling pretty calm tonight. I'm just ready to get going with treatment, finally. Yes, I'll see my MO at 9:30 in the morning and see how it goes from there. My chemo isn't until 12:45 so I'll probably grab a sandwich in the cafeteria between appointments. I read somewhere that having food in the stomach helps avoid nausea so I hope that's true.

    When will you come back to MDA?

  • lw422
    lw422 Member Posts: 1,417
    edited February 2021

    Are your scans at Mays? I assume my chemo day will be Tuesdays so maybe we'll cross paths. I hope your scans and treatment go well.

  • Astrid
    Astrid Member Posts: 1,033
    edited February 2021

    amen to that.

    Search and destroy.

    You can do this!

  • minustwo
    minustwo Member Posts: 13,389
    edited February 2021

    LW - don't put the lidocaine on with your fingers or they will be numb.

    I only saw my infusion room ahead of time because I pitched a fit. But you'll do fine.

  • blue22
    blue22 Member Posts: 172
    edited February 2021

    Why don't these hospitals make a video? What to expect during your infusion? They could show the rooms, how the ports work, etc. Patients could choose to watch or skip it if it will make them more nervous... Minus two good for you asking to see the rooms. I had no idea what to expect, they turned out to be a pleasant surprise.

    Let us know how it goes today LW!

    Blue

  • minustwo
    minustwo Member Posts: 13,389
    edited February 2021

    LW - hope everything went well & you're on the way home.

  • Astrid
    Astrid Member Posts: 1,033
    edited February 2021

    ditto!

    💟🌺💟

  • lw422
    lw422 Member Posts: 1,417
    edited February 2021

    Hi everyone! I feel like I have my own personal cheering section here (and I love it...thanks.) Today went well, though it was a long day. Saw my MO at 9:30, then the oncology pharmacist, signed all the CYA paperwork, then on to the 8th floor after lunch for treatment. The worst part of the procedure was accessing my port, that hasn't healed completely and is very tender. The lidocaine didn't help much with the pain from the pressure, but it was just a few seconds. I was pleasantly surprised by the "private room" feel and didn't have any issues at all with the treatment.

    My little nurse was very understanding about my anxiety. She told me that she has some lesions on her liver and she is terrified of her upcoming biopsy. We bonded over our shared terror and I am hoping for a good outcome for her.

    Here's the view from my chemo bed...

    image

    So today was easy, and I know it will get harder. Let's do this thing!

  • Astrid
    Astrid Member Posts: 1,033
    edited February 2021

    oh LW I am so relieved for you it went well. That private room with bed looks very swish !

    Fabulous. Yes! Your own private cheer squad. The LW Encouragers. Go You!!Smile

    Off to a good start. Sorry about the tender port area though. Darn. Hopefully it improves as you go.

    🙏💖🌸

  • lw422
    lw422 Member Posts: 1,417
    edited February 2021

    Blue, after putzing around on the MDA site, I found some educational videos. It would be helpful if someone mentioned those to new patients, but it seems that New Patient Orientation may have been a victim of the Covid mess. There are a LOT of videos and they are lengthy; I haven't watched any but I scrolled through the titles.

  • lw422
    lw422 Member Posts: 1,417
    edited February 2021

    Hi Astrid! I'm so relieved to have #1 in the record books (and I'm sure many other posters are glad that I'm not whining for a change...HAHA.) I just love how positive, helpful posters on this forum are so willing to assist and encourage newbies. It really makes the diagnosis a bit easier to handle with people to lean on, even in the cyber world.

  • Astrid
    Astrid Member Posts: 1,033
    edited February 2021

    Happynot a bad bunch of humans really

    And no one minds you being honest about scary unpredictable stuff going on in your life right now!

    Really. We have all been there.🌸💗

  • minustwo
    minustwo Member Posts: 13,389
    edited February 2021

    LW - great first go-round. Posh suites. I was in an infusion room that had 8 chairs. I know Mayo in PHX has individual rooms too.

    Since I can't remember what chemo you're on, when you get a chance will you go to "my profile" and enter your treatment plans?

  • blue22
    blue22 Member Posts: 172
    edited February 2021

    Hi LW,

    Glad it went well! Will you have your own room each time? Are you able bring visitors? Once I got used to the routine I would bring my daughter and we would watch movies on her laptop. That was fun.

    I hope you now have that feeling a lot of people have once they start treatment where you feel a purpose and sense of direction. I know people hate the "Journey" metaphor, but to use it anyway, before it was like you knew you had to take a trip but had not clue where, what it would be like, etc. Now you have a map, and you've visited the first destination, and you know where you are headed next.

    Hopefully you are able to get out and enjoy the day today!

    Blue

  • lw422
    lw422 Member Posts: 1,417
    edited February 2021

    Hey -2. My first treatment is 12 weeks of Taxol, 1/wk. Then I'll get the "red devil" AC, 12 wks, 1/3 wks. After that the mastectomy and then radiation. So practically a year of my life, but I hope it will add "years" to my life. I'll try to update my info later.

  • lw422
    lw422 Member Posts: 1,417
    edited February 2021

    Hi there, Blue. As long as my treatments are at MD Anderson Mays Clinic, I will get the individual room like in the picture. Due to covid, I could be shifted to a different satellite campus and I don't know what their facilities are like. I did ask to have treatments at Mays because I'm familiar with the place now and it's the closest one to me.

    I cannot have anyone accompany me at all. I've had to endure all of this so far with my husband sitting outside in the parking garage. I just HATE this stupid covid crap.

    I think I will take my ice booties next time and a couple of frozen bottles of water for my hands. I figure it can't hurt so why not. I didn't buy the cooling glove things because I use my phone and tablet too much.

    I'm feeling pretty good today, so I'm hoping that I don't develop any horrible SEs. I've been guzzling water and rinsing my mouth with baking soda/water to help prevent mouth sores. I need to get my "chemo countdown" calendar started. Someone suggested putting info such as when a certain SE occurred and that sounds like something I will do.

    Hope you're doing well!

  • lw422
    lw422 Member Posts: 1,417
    edited February 2021

    Hey Jana! The Woodlands sounds like a nice facility and I suppose I'd expect no less. I have heard that League City is a nice place, too. You can practically just drive up to the front door and walk in... no city traffic and no parking garages to deal with.

    No, as far as I know they aren't giving me Neulasta at least not yet. It was mentioned by the pharmacist for when I start AC. She mentioned the OnPro "patch" and said my insurance might not spring for that, which I hope is not the case. I'd hate to have to drive back up there in 24 hours for a shot. I asked about the cost, thinking I might pay for the patch thing myself, lol. She said "over $1000" so then driving back up there didn't sound as bad. HAHAHA!

  • minustwo
    minustwo Member Posts: 13,389
    edited February 2021

    LW - if you intend to try cooling, you should start right away. Really the easiest thing is frozen peas in a zip lock bag. Those are 'moveable' like a bean bag chair or bucky pillow, so you can squish up/down/whatever. I still love to eat peas, but I sure threw away those bags I re-froze and carried back & forth for months.

  • lw422
    lw422 Member Posts: 1,417
    edited February 2021

    Thanks -2. I have used frozen peas for other minor injuries in the past, but I found they thaw out pretty fast. I'll try the socks and the frozen water bottles first.

    I'm trying to figure out how to keep from losing nails. I see there is some kind of prescription Rx that is brushed on like nail polish. I wonder if anyone has tried that stuff.

  • minustwo
    minustwo Member Posts: 13,389
    edited February 2021

    Some people wrote that dark nail polish (navy or black) helped. Supposedly kept the light out. I found it was just a mess and only did it one time.

    Do you have a fridge/freezer in your room? The cold really helps. My infusion of Taxotere was 60 minutes. I stared the icing 30minutes ahead of time & kept it up for 30 minutes after. That meant two bags of peas, since they stayed cold enough 1/2 way through. The nurses kept he 2nd bag in their freezer and brought it out to me as requested. I did not lose any nails - nor did any of my fingernails even come loose.

  • lw422
    lw422 Member Posts: 1,417
    edited February 2021

    Honestly I have no idea if there was a fridge in that room; I pretty much stayed put on the bed because I was afraid I'd pull something loose. <img class=" /> I can fit the socks and 2 frozen bottles in my little nylon cooler bag. I'll see how that works out; my Taxol is only an hour, too.

  • lw422
    lw422 Member Posts: 1,417
    edited February 2021

    Jana--have you seen the weather forecast for Tuesday?? BRRRRRRRRR, we are going to be cold!!

    Hmmm, I hadn't thought of the "covid angle" on dealing with insurance... good idea. Did you have the bone pain with Neulasta? It would be nice to avoid that if possible.

  • lw422
    lw422 Member Posts: 1,417
    edited February 2021

    Good news this morning from the gynecologist; my uterine biopsy was BENIGN! :happy dance: So no hysterectomy for me. :woohoo:

  • JayC10
    JayC10 Member Posts: 1
    edited February 2021

    Howdy LW,

    I'm fairly new to the site but have found it helpful already. As a RN for 37 years, it's always interesting to be on the "other side of" a Dx or treatment. I too have had stage 3 (based on tumor size),L breast multiple masses with lymph node metastasis. Ductal Ca is the most common kind of breast Ca. Have since had chemo and still on infusions. Mastectomy was delayed 5/2020 due to covid and 2 following emergent surgeries in another hospital in covid OR's because it was time sensitive.

    It can be very overwhelming where you are but it sounds like you are staying up to date and are being well informed about your status. Do get into the habit of writing things down. My notebook continues to be a life saver. "chemo brain" is a real thing. Somehow I always found that term offensive. I prefer to tell folks I have CRS *(can't remember shit). Don't be afraid to ask lots of questions and also to ask for help when you need it.

    Best of luck to you on your journey. If there's anything I or we can do ...just ask !!

    Hugs, JayC10

  • lw422
    lw422 Member Posts: 1,417
    edited February 2021

    Hello JayC and thanks for the kind words. Sorry to hear of your diagnosis and I hope you are doing well with treatment. I'm finally settled down from my original hysterics, with a lot of help from kind people such as yourself. This is quite the journey we are on but at least we don't have to travel alone. Keep in touch!

  • minustwo
    minustwo Member Posts: 13,389
    edited February 2021

    LW - yup, I saw maybe 17 degrees out in my NW neck of the woods. EEEK

    Congrats on the benign uterine biopsy.

    Unlike Java, I had great success with Clairtin. I took Claritin the day before chemo and continued for several days after the 24 hours post chemo Neulasta shot. Make sure it's regular original and not the "D" variety.

  • Astrid
    Astrid Member Posts: 1,033
    edited February 2021

    wonderful news today for you LW. Not having to have that surgery? Plus the weight of a 2nd dx or related... gone! Phew.

    image



  • lw422
    lw422 Member Posts: 1,417
    edited February 2021

    Thanks, y'all. I'll certainly take all the good news I can get.

  • beesy_the_other_one
    beesy_the_other_one Member Posts: 170
    edited February 2021

    Very happy for you, LW, on the benign uterine biopsy! I hope you're still doing well after your first chemo. Like MinusTwo, I had success with Claritin helping the bone pain. One interesting thing I learned during chemo when I mentioned to my MO that my feet wouldn't hurt when I'd get up in the morning like they normally do (arthritis, I guess). He said chemo actually improves arthritis while you're on chemo. I found that so interesting. I'm back to hobbling around for the first five minutes in the morning.

    Stay warm Houston ladies! Next time I watch the weather I'll have to look at what they're expecting in Woodville--bet it'll be pretty chilly for you, Jana!

  • lw422
    lw422 Member Posts: 1,417
    edited February 2021

    Hey Beesy, and thanks. I'm still feeling pretty good and hoping I will have minimal SE's. I'm glad I started with Taxol instead of the AC so I can "ease" into it!!

    This cold weather is something else. I hope it's not icy on Tuesday morning because I have to be at MDA by 7 a.m. for blood work and Treatment #2.

    I hope everyone is able to be home, safe and warm for the next few days.

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