Starting Chemo March 2016

Options
1…2122242627…29

Comments

  • Mecool
    Mecool Member Posts: 70
    edited March 2016

    wow, lots going on! Hope everyone is doing well today. I'm sitting in the chair now for #1, just waiting for the emend to run through and then my 10 minute adriamyacin push will begin. Followed by 20 minute cytoxan drip. Been a long process this morning being the first infusion but I'm glad to now know how quick it will usually be. You all had me scared about the steroid so I questioned it. Nurse said it's purpose was again for anti nausea so I asked if I could opt out of it (after all I have iv zofran and emend and at home zofran, compazine and ativan). She went to ask my doc about a possible lower dose. Turns out my dose is only 10 MG and they say it will wear off by tomorrow morning. So I'll give it a go! Glad you recovered from that little bump, Nina!

    Here's wishing everyone a calm, relaxing Tuesday with little to no side effects....myself included now ;)

    · Share on FacebookShare on Twitter
  • Nina27
    Nina27 Member Posts: 77
    edited March 2016

    good luck mecool! Hope everything goes smoothly for you xx

    · Share on FacebookShare on Twitter
  • Seashine
    Seashine Member Posts: 24
    edited March 2016

    teaner16, that is awesome, you go!

    When I went in for infusion day I thought about talking to people, but then I got shy. Everyone in there was so much older than I was and one woman looked at me with such potty on her face I wanted to tell her off. Maybe next time, I'll work my way up to it.

    Sugar still tastes terrible to me. Like really terrible. I need to get my hands on some mashed potatoes!

    Here's a different kind of question: anyone read the book Crazy, Sexy Cancer Tips? A friend recommended it to me and I have to say, it is sooooo great. I was roaring with laughter about 2 pages in. Worth a read if you like stories of others.

    Facebook advice needed... I have told all my close friends and family about bc, but I have not broadcasted it to the world. If I start posting photos etc of what my life is like, many more people are going to find out. Is that a weird way for them to find out? I mean should I make some big reveal on my page? Inquiring minds want to know how you dealt with this

    · Share on FacebookShare on Twitter
  • Melgirl
    Melgirl Member Posts: 165
    edited March 2016

    Seashine, I had a hard time deciding about FB too. In the end I do post it on my page. I told people that I had struggled over whether I wanted to post anything because I really didn't want a play by play on FB. Then I told them my diagnosis, how it was discovered, what treatment I would need, and encouraged everyone to get their mamos and do their monthly checks. I also briefly told them how my immediate family was doing. It was short and sweet like this....

    I have breast cancer: it sucks

    I had a mastectomy: it sucked

    I need chemotherapy: it will suck

    (Etc.....that's just me and the way I am) I had nothing but love come back to me. It felt good to have the support.



    · Share on FacebookShare on Twitter
  • LifeOfBabbs
    LifeOfBabbs Member Posts: 28
    edited March 2016

    Hi All! I was planning on starting radiation on Monday, but my radiation oncologist just called and said that my insurance approved me for the Oncotype Dx test. And because I'm high grade DCIS with comedo necrosis, she wants to wait for the result. If the percentage is high, she wants to do chemo instead. I didn't think anyone ever got chemo for DCIS. Anyone out there have any input on this? Thanks so much!

    · Share on FacebookShare on Twitter
  • NancyHB
    NancyHB Member Posts: 1,512
    edited March 2016

    LifeOfBabbs - there is an Oncotype DX test specifically for DCIS, to determine the efficacy of radiation. Chemo is unheard of for DCIS as chemo is a systemic treatment and DCIS - even high grade - is non-invasive. Is it possible there is a micro invasive component to your DCIS?

    As a side note, your radiation oncologist won't decide if you do chemo or not - only a medical oncologist is able to make that treatment plan with and for you.

    · Share on FacebookShare on Twitter
  • Italychick
    Italychick Member Posts: 2,343
    edited March 2016

    the March 2015 chemo group created a secret Facebook group that only we know exists, and we post pics, all kinds of stuff on there. I love it.

    Just a thought. We had one woman be the creator and then we all gave her our names to add to the group and she added us and made it secret. You can't even search for it. We called it Sisters of the Traveling Bracelet because we got a charm bracelet and each of us added a charm of special meaning to us then mailed it to the next person who needed it. That bracelet has become such an important symbol for us.


    · Share on FacebookShare on Twitter
  • Loretta_J
    Loretta_J Member Posts: 67
    edited March 2016

    I like that idea. I find myself wanting to hit the "like" button on here. I would be willing to create the secret page if there is anyone interested besides me. Thanks Italychick.


    Loretta

    · Share on FacebookShare on Twitter
  • Loretta_J
    Loretta_J Member Posts: 67
    edited March 2016

    Mecool. I only get the steroid in the IV before my infusion starts too. Not before and not after. I don't know the dosage. I am thankful that other than for some bloating and a tight feeling around my head the evening of the infusion, I did not have any effects from the IV dexamethizone.

    I took a 3 dose RX of Emend. The first on infusion day then a smaller dose on days 2 and 3. I had no nausea until days 5-9. Zofran helped but I had to take another anti-nausea med between doses and everything together made me feel strange. I had the big D so was also having to take Lomotil and Imodium. I will try and find a different regimen Monday when I meet with my MO before my infusion.

    Hope things go well for all of you today.

    God bless.

    Loretta

    · Share on FacebookShare on Twitter
  • pebee
    pebee Member Posts: 317
    edited March 2016

    Hi Everyone -

    Five years ago this March, I was getting pre-operative chemo - I did four rounds of TC before my surgery in July. I just wanted to say that you will get through this - it will end and you will make it to the other side.

    I know that someone posted to my group many years ago, and it gave me hope. I wish that all of you will finish up with the least amount of side effects and issues.

    You are all in my thoughts and prayers - Pebee.


    · Share on FacebookShare on Twitter
  • Loretta_J
    Loretta_J Member Posts: 67
    edited March 2016

    Seashine - I didn't talk to anyone except my infusion RN on my first visit either. There was a stream of people in and out of my little semi-private cubby with a beautiful view of the Sandia Mountains. Most pulled the curtain and even the ones who didn't left me to my book. I was there 7 hours. Each of them was there an hour or less. Probably on maintenance chemo.

    You'll get there.

    As for FB, I posted too much info. Wish I had been brief like suggested by Mecool. After the first post I created a closed page and added those who called or texted, sent emails or private messages. I try to update weekly. That way those that want more info get it. Those that don't, don't have to read the gory details. I suggest you let your friends know about your cancer. It means so much to have that extra support.

    Loretta

    · Share on FacebookShare on Twitter
  • MFPM
    MFPM Member Posts: 69
    edited March 2016

    Candy, Since we are taking the same, I've had my up and down days, today better on my feet.  Not sure if you've been feeling unsteady, a bit weak, and woozy which has me so bothered with dealing with other side effects too, stumbling around in a daze.  Today, day 6 not as bad but like you say, I don't know if I'll have that week to feel re-couped considering he broke down the T into the 2 week infusions.  I'm also still questioning the dose of C, 970 mgs., considering I'm so thin/light weight to begin with if dosing goes by that.  Some told me it's over the top for me though I do know that others get more but I'm a little under 120 lbs.!
      Sorry, I'm so bad with names, but someone wrote about getting the I.V. steroids.  Besides it helping with nausea, I'm told it's to pre medicate against any side effects from some of the chemos, so it's a must.  Yes, after my 1st almost 2 weeks ago, between that and the anti nausea drips, I walked out of there dopey!
      Melgirl, Teaner and Ksusan, I'm almost positive she's not a nurse but I will surely try to get answers.  Yes, she's a sweet girl but I want to feel in safe hands as we all do, especially going through something like this.  After what I read on a website with people complaining, I'm feeling very un nerved and though the Dr. is right there in and out often, a private office/house, he should take over or be giving the treatments if that is the case.  I have no clue as to the credentials of anyone there except for the Dr. and from what I see, everyone else is there getting iron or vitamins, not chemo.  I don't need to take any chances or be a guinea pig either, doing something so serious!  I have a lot of questions when I go and hope I don't get bad attitude!
      As for a Facebook page, what are we waiting for?!  Like Loretta, I'm always looking for a "Like" button here and being new, find it hard to look back to comments to get names etc. to answer.  Let's do it and anyone interested or opening a FB page, please write to me privately to let me know!  I want to be a part of it and can help however! 

    · Share on FacebookShare on Twitter
  • Mecool
    Mecool Member Posts: 70
    edited March 2016

    I would be all for a FB group. I'm a member of another secret group, moms that met on Baby center when we were all pregnant with our May 2012 babies.....those girls are like family to me now. I spend a lot of my day on FB with them.

    I'm on my couch. Was feeling ok. I don't feel nauseated or anything, just really weak and tired. Already? And doesn't that seem the opposite of a steroid effect? I'm trying to just get through the evening so I can go to bed early. 180 ounces of water in me and peeing non stop. Hoping to wake up feeling decent in the morning but also feeling like I'm going to spend the next week on edge just waiting for side effect bombs to drop.

    · Share on FacebookShare on Twitter
  • 786tex
    786tex Member Posts: 42
    edited March 2016

    A FB group would be great. I didn't post anything on there because I plan to look for a new job next year and I already have my age working against me, don't need CA dx out there too. I only get steroid at injection time. Had them cut it in half last time to 12mg and felt so much better. I even slept some that night.

    · Share on FacebookShare on Twitter
  • Logang
    Logang Member Posts: 421
    edited March 2016

    So... just realized I'm running a fever. It was 99.4 about 30 minutes ago. I am to call my MO if I have a fever over 100.4. Here's hoping it stays down!

    I would love to be part of a group on Facebook! That is a great idea!

    Lori

    · Share on FacebookShare on Twitter
  • HolaSandy
    HolaSandy Member Posts: 85
    edited March 2016

    yay! I was going to suggest an FB group too so I'm glad someone else did!! I haven't posted anything on my page about this CA but I figure anyone who needs to know, does. Though I did consider posting about it. It is not s secret at all but I'm just not one to put stuff like that out there on my page. Side note: I got a wig from the cancer Centre today. It's not too shabby! image

    · Share on FacebookShare on Twitter
  • Teaner16
    Teaner16 Member Posts: 18
    edited March 2016

    Me too! Me too! I'm in for a private FB group. My lumpectomy was on Jan 22. My 65 b-day was Jan 31. On Jan 25, my pathology from the lumpectomy indicated that I was equivocal HER2 and they "guessed" at that time that it would turn out to be HER2- and I would just have radiation. So, on my birthday, I joyfully posted on FB that I had BC, they got it all with huge clear margins, no cancer in my lymph nodes, and I'd have 3 weeks of Canadian Fractionation radiation, and be cured. Got lots and lots of great feedback and support. Then, a week later I went to see the RO and she is the one who told me that they ran the pathology on that icky tumor a million more times and it turns out that I am HER2+. So then to the MO and that's why I now have chemo and targeted therapy, Herceptin. I have not posted this on FB for the world to see, but have been tempted, so I'm still thinking about it. But, I'd love a group of us.

    · Share on FacebookShare on Twitter
  • HRwinter16
    HRwinter16 Member Posts: 73
    edited March 2016

    looks great Holasandy and Loretta!

    And so many other updates - wow, hope everyone is doing ok

    I had session two yesterday - was there from about 10am to 2:45 pm

    Felt ok but exhausted today and starting to feel aches and pains from the neulasta...

    So so tired. Trying to help daughter with homework...

    Need sleep!

    Already got take out for dinner and had a forbidden ice cream Popsicle ... Oy!

    Xo

    Hugs to all

    Heidi

    · Share on FacebookShare on Twitter
  • Melgirl
    Melgirl Member Posts: 165
    edited March 2016

    MFPM, either your oncologist or a registered nurse, nurse practitioner, or physicians assistant must administer chemotherapy. It is illegal for anyone else to do this. I can't imagine this happening being a nurse myself. If you find it to be true it should be reported. You should have access to excellent care in New York.

    · Share on FacebookShare on Twitter
  • HRwinter16
    HRwinter16 Member Posts: 73
    edited March 2016

    PS

    Anyone else feeling more gassy than usual? Not sure what to do about that!!

    · Share on FacebookShare on Twitter
  • HRwinter16
    HRwinter16 Member Posts: 73
    edited March 2016

    MFPM

    do you need help? I'm a social worker at a hospital and might be able to help decipher or advocate with you on some things?

    I'm concerned about what you are describing there - you say you in queens - is this a clinic you are going to? At a hospital in queens?

    · Share on FacebookShare on Twitter
  • Jonsey22
    Jonsey22 Member Posts: 100
    edited March 2016

    Treatment 2 went very well! Both T And C took 1 hour so it is more like the 3.5 hour session they said it would be. No reactions!

    About the Facebook thing, I posted at critical times like after surgery, at first treatment, second treatment, etc. It is nice to share with more distant family and friends I don't talk to all the time or even neighbors I haven't seen in awhile. For others, it is too much information maybe, but you never know who has (or will be) touched by cancer. If they don't like it, they can I friend me. Lol

    Feeling well this evening so far. Better than last time. Hope this good streak continues.

    I have decided I do not like the MO who is supervising me. He is the only one who doesn't talk to patients other than to come to your chair (kind of public) to ask if you have any questions. All of the others meet with patients in a room and go over blood results. I had to ask the nurse for a printout of my blood results so I could see them. I was transferred to him from another MO I really like for treatments as the location is close to home. I am only doing 4 treatments, and this was #2. If everything goes well, it probably won't matter. But if I run into trouble, I am not even sure if he will talk to me. Frustrating. Not sure if I should leave it or if I should ask to be transferred. Any thoughts? Keep in mind, he isn't my realMO just the one supervising my treatments at a community outpost.

    Candy

    · Share on FacebookShare on Twitter
  • HRwinter16
    HRwinter16 Member Posts: 73
    edited March 2016

    Candy,

    If he is not your ongoing oncologist, it may or may not be worth it to switch

    If you are comfortable advocating for your needs, as you have been, you will be able to get what you need with the current arrangement I think - but that said, if you really feel you want to switch, definitely do it and don't feel bad about it! You deserve the best care ;

    · Share on FacebookShare on Twitter
  • WannaCruize
    WannaCruize Member Posts: 66
    edited March 2016

    I'm wondering about taking TylenolPM to deal with problems sleeping while taking the Dex pills. I'm on the same schedule as some of you, 2 pills (4mg each) AM & PM the day before chemo and chemo day, then just in the AM on the day after chemo.

    I like the idea of a private facebook page, but would hate to lose the back and forth here. It's been very helpful to be able to google search for symptoms, side effects, treatment options, etc., and have the BCO forums show up.

    Round 2 tomorrow for me, and port installation isn't until April 11th. I'm going to ask for their best sticker when I sit down, I will NOT be a happy camper if it takes 4 sticks to get a good vein, the marks from one of them JUST NOW has faded away.

    I saw my MO yesterday for our pre-chemo visit, and I asked him if I could get my blood draw then, instead of coming back today. He agreed and I picked up my Zarxio shots (generic Neupogen) to give myself after chemo, so I'm all set. I didn't tell my MO that I'm trying a 'fasting-mimicking-diet) for 48 hours prior to chemo, some of the links posted on here regarding those studies were fascintating, and seemed logical. I'm interested if my blood counts will recover even faster with that, and I could stand to loose some pounds anyway. I have some of my OptiFast packets left over from from when we were in the program, so I'm at least getting basic nutrition from that while staying under 500 cal per day.

    · Share on FacebookShare on Twitter
  • Phillipians4
    Phillipians4 Member Posts: 21
    edited March 2016

    I would be interested in a private FB group also because I love all the support and advice here! I never did post publicly but I did create a page on caringbridge and shared it prvately with friends and family who wanted to keep updated.

    My #2 infusion is Thuesday 3/31. They have me taking Dex the night before and the morning of infusion. Then a lil bit more immediately before administering Taxol. I didnt notice the alertness as much as the bloated feeling on the 1st round. The big C started right away too so I plan to get ahead of that this time. I will let you know how this one goes.

    I have been noticing my scalp has been real tender in some spots and some hair falling out. Won't be long I am sure ...

    Kristin and Loretta I love your new "do"!!!!! They look great!

    Here's wishing everyone a SE free week. Stay strong!

    · Share on FacebookShare on Twitter
  • Loretta_J
    Loretta_J Member Posts: 67
    edited March 2016

    holasandy. That wiglooks so natural.

    · Share on FacebookShare on Twitter
  • Italychick
    Italychick Member Posts: 2,343
    edited March 2016

    our Facebook page from March 2015 didn't stop us from posting here (as you can see some us even follow you guys as our "sisters"), it just opened up pictures, funny sayings,inspirational messages, and things about normal life that don't fit in as well on this site.

    · Share on FacebookShare on Twitter
  • MFPM
    MFPM Member Posts: 69
    edited March 2016

    Melgirl and Hrwinter, Thank you both.  I left a major hospital in Manhattan to get treatment closer to home, worried about being sick during the travel.  I'm going to a private Dr.'s office/house who does have a good reputation though what I suspected was written on a website.  I will address this somehow on Thursday and trying to keep it calm, with this having me nervous.  As I say, it's hard enough going through this but to have to worry or question people, shouldn't be.  He is there but does not interact on treatment days but something has to be said prior this time.  I will keep you posted and am trying not to stir things up just yet.

    · Share on FacebookShare on Twitter
  • NancyHB
    NancyHB Member Posts: 1,512
    edited March 2016

    I'm one of the Admins of the private FB group for my BCO January 2011 chemo group. We started the group so we could continue to support each other in a "real life" environment that allowed us to not have to come back here (if we didn't want to) and "move on" from cancer. We still connect daily to discuss "life after cancer" and it's been incredibly helpful. We're able to talk about all the things we don't want to discuss publicly for our family and friends to see - including our fears about recurrence, our "scanxiety" when those annual mammograms come due, our challenges in moving past long-term side effects, even financial and employment issues. We're able to share our experiences with Tamoxifen and AIs; we talk about intimate issues, too, in a safe and protected environment. Many of us have been tested for recurrence and we understand the fear and worry in a way no one else (even our most beloved and supportive family members) understands. They were the first (besides my DH) that I shared the news of my recurrence with, as they walked with me through testing and diagnosis. I can't imagine my life now, four years later, without them by my side.

    I look forward to continuing our sisterhood beyond this point in time!

    · Share on FacebookShare on Twitter
  • NancyHB
    NancyHB Member Posts: 1,512
    edited March 2016

    I also wanted to say I've been reading but not posting much, I'm keeping you all in my thoughts. I've been down for the last few days with the worst cold and sinus infection I've ever had. No voice, painful teeth and sinuses, constant coughing. Minimal fever so I haven't called anyone. I just finished the Cephalex for my SNB infection, I can't believe I'm now dealing with this!! I never, ever, EVER had any infections before, now my second illness in two treatments. I'm a-feared for what's coming with the next four!!

    · Share on FacebookShare on Twitter

Categories