Apparently I Am "Just Diagnosed." :(

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  • mightlybird01
    mightlybird01 Member Posts: 217
    edited February 2021

    LW422, you have all reasons to be unsettled about not getting information before. I took my chemo at a small local hospital where I had at least 2 weeks before a 1 on 1 teaching session with my oncologists nurse, going over all chemo drugs, their side effects, when to expect hair loss, or any question I had. I had to provide all my medications (which I had non) and supplements (Vitamin D and Mg) and I also got a sheet which stated exactly for which symptoms I should and for which I should not call her. I did my chemo at my small local hospital, even though my main treatment center was a University hospital (NCI cancer center) a bit further away. After talking with the oncologist at the University hospital, she encouraged me that I could just as well do chemo closer to home in a smaller center, and I am so glad I did. So basically I had 2 oncologists, one locally who I saw before every single chemo and one just overseeing the whole thing from a distance at the large University hospital, where I did my surgery afterwards and all imaging. They really worked very well together (even across state lines). I think I got great care at that local hospital, much less people and much more personal care. I guess I had the best of both worlds.


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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited February 2021

    https://www.mdanderson.org/content/dam/mdanderson/documents/patients-and-family/becoming-our-patient/while-youre-here/pe-booklets/chemotherapy/Chemotherapy-Guide.pdf

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  • LW422
    LW422 Member Posts: 1,312
    edited February 2021

    Thanks everyone. I called the chemo nurse this morning and got my questions answered. She also said they "will go over everything in the morning," which wouldn't have helped if I took any medication that would be contraindicated tomorrow. There are just a few things that need to be communicated in advance of treatment date.

    Thanks for the link, Melissa. I found that last night but it's 72 pages of stuff when I only wanted a few questions answered. I think SBElizabeth's suggestion of a 1-page handout is excellent.

    Mightybird--there are satellite locations for MD Anderson treatment facilities but none of them are any closer to me than the Medical Center. I'd love to be treated in a smaller, more "patient friendly" location. I'm sure when I learn the ropes and get into treatment I'll settle down, but I'm tired of feeling frantic all the damn time.

    I appreciate everyone's help very much.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2021

    so glad you got the answers you needed LW.

    The cyberbus will be parked outside waiting post tx. Xx

    Beautiful post sbelizabeth.

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  • LW422
    LW422 Member Posts: 1,312
    edited February 2021

    Hey Astrid. As always, thanks for your kindness. I am settled down a bit, but I've had a busy day getting laundry caught up and planning some meals for this week. I'll be glad to have tomorrow in my rearview mirror and hopefully calm down some. I feel like I have been in turmoil for two solid months and I just want to relax.

    I appreciate everyone's posts and generous sharing so very much; it really helps when navigating unknown waters.

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  • blue22
    blue22 Member Posts: 280
    edited February 2021

    Hi LW,

    I'm surprised they don't teach ahead of time. My understanding was that it is routine for my cancer center to do the chemo teach on a separate day. I remember that was something that could have delayed starting chemo, but my MO was able to get me in for a session ASAP. I also had sessions before radiation and surgery... At each one of these I received hand outs and my husband and daughter were able to attend (per-covid) and ask as many questions as they wanted. I think it is better to digest information ahead of time when you are not anxious about treatment that same day... and it gives you a chance to ask more questions after you have had a chance to digest!

    I'm glad you were able to reach the nurse!

    I recommend bringing something to do and to distract you while you are there. If you get pre-meds it makes the process take quite a while, and they will likely want to keep you for a bit afterwards for observation. You could download a podcast, bring a book etc. I HIGHLY recommend looking into specific meditations/relaxing podcasts/recordings for treatment. There are a lot of these online if you look. You might also find that you fall asleep - I had Benadryl as one of my pre-meds and it made me drowsy.

    I also watched movies a lot, basically you want something distracting that makes the time fly by.

    Did they give you lidocaine for your port? If not, not a big deal, but I ask about it. That way you don't feel a think when they access it.

    Take Care,

    Blue

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  • LW422
    LW422 Member Posts: 1,312
    edited February 2021

    Hey Blue. Yep, tomorrow's the big day. I was disappointed that MDA didn't provide more information in advance, but at least I got some answers when I called. I'm not taking anything with me tomorrow except my phone; I figure I'll be too wired to read or watch videos anyway.

    Yes, I got the Lidocaine. I'm glad you mentioned that; I need to go put some plastic wrap in a baggie. I asked the nurse today about the steri-strips that are still on my port incision; she said to leave them be because the port is actually below where the strips are. Who knew?

    I will be happy to finally begin treatment and hope that SE's won't be horrible. I'm going to ask a bunch of questions about icing my hands and feet, etc. and see how they handle that.

    Wish me luck; the party's about to start!

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  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited February 2021

    They will give you IV benadryl. It's to prevent allergic reactions to the chemo drugs. Don't fight it...go to sleep. It's a great nap.

    Go get 'em tomorrow. It's a search and destroy mission.

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  • LW422
    LW422 Member Posts: 1,312
    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?

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  • LW422
    LW422 Member Posts: 1,312
    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.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2021

    amen to that.

    Search and destroy.

    You can do this!

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    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.

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  • blue22
    blue22 Member Posts: 280
    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

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited February 2021

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

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2021

    ditto!

    💟🌺💟

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  • LW422
    LW422 Member Posts: 1,312
    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!

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  • Anonymous
    Anonymous Member Posts: 1,376
    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!!

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

    🙏💖🌸

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  • LW422
    LW422 Member Posts: 1,312
    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.

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  • LW422
    LW422 Member Posts: 1,312
    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.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2021

    not 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.🌸💗

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    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?

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  • blue22
    blue22 Member Posts: 280
    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

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  • LW422
    LW422 Member Posts: 1,312
    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.

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  • LW422
    LW422 Member Posts: 1,312
    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!

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  • LW422
    LW422 Member Posts: 1,312
    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!

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    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.

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  • LW422
    LW422 Member Posts: 1,312
    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.

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    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.

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  • LW422
    LW422 Member Posts: 1,312
    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.

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  • LW422
    LW422 Member Posts: 1,312
    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.

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