January 2016 Chemo!

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  • Cathytoo
    Cathytoo Member Posts: 667
    edited June 2016

    MissBee...I was told the same by my MO. No scans unless there are symptoms

  • Cathytoo
    Cathytoo Member Posts: 667
    edited June 2016

    TAXOTERE...NO HAIR...It's only been two weeks since my last TC infusion. I know it's way too early to expect any regrowth. But I can't help worrying that I might be one of the few women who won't have hair grow back after Taxotere. Anyone have this happen?

  • Valstim52
    Valstim52 Member Posts: 1,324
    edited June 2016

    MissBee, told the same by MO. No scans unless there are symptoms.


  • gracie22
    gracie22 Member Posts: 229
    edited June 2016

    Most (not all, but most) oncs will set the bar for scanning pretty low for HER2+ patients. If you want it done a few months or a year down the pike, just ask for it or mention a physical issue that you have that might indicate a problem (even if it is very slight). Do what you need to get the info. After everything you have endured, getting a peace of mind scan is not asking for much. I also think that it is just a wise thing to do when contemplating a job change; my current employer offers generous short and long term disability benefits, and I would not give that up to go elsewhere without some assurance that my cancer has not resurged. I agree with many others here who don't believe that "finding it later" has no effect on ultimate outcome. The lower the tumor load, the better outcome, as shown in the recent info reported here that Stage IV patients do better long term when tumor is removed. That contradicts what docs have been saying for years.

  • Smurfette26
    Smurfette26 Member Posts: 730
    edited June 2016

    At the moment I'm seeing both my Onc and my surgeon every 6 months. So I see one of them each 3 months. I have bloods done before each visit but my Onc did say that they are not greatly beneficial to me. I will have a mammo on my remaining breast and an ultrasound before each visit with my surgeon. Both my Onc and surgeon carry out physical exams each visit.

  • Lolliipop
    Lolliipop Member Posts: 32
    edited June 2016

    Cathytoo, I finished chemo on 4/21 and still have no hair growth any where. I am super nervous that my hair won't be coming back.

  • Smurfette26
    Smurfette26 Member Posts: 730
    edited June 2016

    It was well over 3 months before I saw any substantial hair growth after my last TC. (January 12th) It's now an inch long and very grey.

  • buttaflydiva
    buttaflydiva Member Posts: 88
    edited June 2016

    I bummed out about the scan situation too.I though I would get pet scan or something. What if there's a rogue cancer cell out in my body that my hormones have called out to.I don't know why we can't get that reassurance. And people keep asking me when I'm going to get a scan to make sure is all gone and when I tell them I prob get one they think I need to change no


  • jensgotthis
    jensgotthis Member Posts: 937
    edited June 2016

    I'm glad to hear that I'm not alone with the hot flashes.

    About the scans, I agree it's scary that th won't be scanning you. It's kind of crazy because as a stage 4 patient, I'll be getting scanned a lot. If it helps, between scans, the rule I've been given generally is that I should report to my MO any pain that lasts for 3 weeks.

  • LovesToFly
    LovesToFly Member Posts: 1,133
    edited June 2016

    because I had a lumpectomy, I believe I will be having mammograms every three months or six months or something like that.

    I read an article recently, it was talking about a lot of women choosing to have mx when lx and rads would give them the same outcome the risk of recurrence, because of the peace of mind and not have to need to do regular scans. The article was saying that study show that even though they felt it would give them peace of mind and anxiety, it actually didn't. Reading what people are saying here I wonder if it's really trading one anxiety for another, instead of worrying about every scan, worrying about not getting them. I hope nobody takes that as a put down on whatever choice they made, if they had the choice, because I don't mean it at all. I just mean it to say that it sucks, no matter what we do.

    What really concerns me is how I would know if it is somewhere else, it was in my lymph nodes and my oncologist has said that really the bigger concern is it turning up somewhere else. Mammograms are not going to find it in my bones, or my lungs, or my brain.

  • Valstim52
    Valstim52 Member Posts: 1,324
    edited June 2016

    Just chiming in on scans. I know I'll have anxiety either way. If I don't get scans unless I have a symptom then i'll worry what if. I'll also have scan anxiety before any scan if I get them. Can't win with this stinking dx.

    My MO and BS have both said, 1x yearly I'll have scans, with 3 month check ups in between.

    At this point, not sure I really want to know, but that's me Because if they find something then back to treatment, and it would suck to be in chemo (only choice for my TN) and have no progression symptoms, but that's just me.

  • LovesToFly
    LovesToFly Member Posts: 1,133
    edited June 2016

    At this point, not sure I really want to know, but that's me Because if they find something then back to treatment, and it would suck to be in chemo (only choice for my TN) and have no progression symptoms, but that's just me.

    I understand. I'm not TN, but still...a recurrence soon would lead to more treatment soon...and I don't want that. Ultimately I guess I would rather no sooner, but it just sucks to think about it coming back quickly (if at all) there is certainly a part of me "just don't tell me for a year".

  • Frill
    Frill Member Posts: 311
    edited June 2016

    Follow up visits still seem so far away when I don't even feel close to being "done" yet. My boss was treated at the same hospital as me, and he goes back pretty often, but I'm not sure what they're checking or how. I know tests are being done. But it's not like he has BC, so it's prolly a whole different world in my part of the hospital.

    I thought I had BC when I was 9, convinced, obsessed. I don't want to rattle that part of my head again and worry about some other part. I guess taking the best care of myself I can, and Jen's advice is good - pain that lasts longer than 3 weeks. And gracietoo as well, if you have a suspicion, make them check. I'm in a FB group with some BC survivor women, I think I'm the only one currently in treatment, and at least one has had a scan done recently based on symptoms reported to MO. Scan came back clear for first person. It may be that MOs won't scan as a matter of course because of insurance, but if you give some kind of reason, it will get done.

    That pesky RAD51C defect means I have to go in every 6 months to get checked for ovarian cancer, since I refuse to get a hysterectomy. Idk why I hang on to my estrogen so strongly, lol, since it so obviously wants to hurt me. My sister told me that our mother had one, why not just do it. I told her then we should do it together if it was that easy.

    I feel tainted already, I guess is what it boils down to, and scans or no scans - it's out of my hands. Then again, I haven't been informed one way or another, so I'm predicting how I might feel. I imagine *sucksville* is what it will amount to either way, like Jill says. (not an exact quote, but my personal distillation

    Lollipop: It may just be that it's taking your body longer to get the chemo out of your system? Maybe drinking extra water, checking on liver detox stuff may help push things along? Idk, it always makes me feel better if I'm doing something about something that's bothering me. Like Smurfette said, it does take awhile for some people, and it's only been 6 weeks. We were/are being pumped full of a ton of poison. Those poor little follicles may just need more time. <3

    MissBee: You look so awesome, and I'm so happy for you being done!!!!!!

    Jen: I remember that grossness with the drains. I don't look forward doing it again with multiple ones. I didn't have any in home care and no in between hospital visits because I was in Louisiana, so BF and I were pretty much on our own. We were told to try to squeeze and press the snot (well, not like that) down the tube to work it out. How are you feeling? Did you have recon yet, or is that separate?

    Lovesmyvizla: I still have 6 weeks left, if I'm lucky and don't have it delayed again. I'm still here with you in the chemo boat. <3 I have two more FACs. I uber on the way home, and this last time I swear I was hallucinating. I think the Oxy I took for my hands must not work well with the rest of the pre-stuff that goes with the chemo. With Taxol it was so easy, just up and run back to work.

    Jill: Woot woot for hair!!!!!!! That's the way mine was looking during Taxol. I shaved it before FAC, it's starting to come back now. My lashes started marching back. I have 1 brow hair on my left side and 2 on my right. Lol. I had to learn to make brows fast. Thank goodness I had the stuff. Oh - about brows and lashes, someone here mentioned Latisse for it and I checked with my PS, who said it was fine after chemo. She wrote me a script for it. She said during chemo I could try it, but it might irritate my skin and might be a waste of money. But the brows and lashes are the last thing everyone says comes back. Then again, it's a PITA. Cancer has added wayyyyyyy too much time to my makeup routine. I'm glad to hear rads are going well so far. How much time did you have off between chemo and your first radiation?

    I'm so tempted to tell them to shove rads. I'm just so tired of this. And I started off with such a good attitude, I looked back at my Oct. posts. I was so chipper! Lol.

  • Smurfette26
    Smurfette26 Member Posts: 730
    edited June 2016

    I'm in two minds about scans too. Knowing I should know; but not feeling like I could not cope with more bad news and more treatment at this stage. Sigh.

  • LoveMyVizsla
    LoveMyVizsla Member Posts: 813
    edited June 2016

    I complained about a pain in my head and my MO sent me for an MRI. I know I get mammograms every six months for the first three years, but my lump wasn't detected on a mammogram, so I'm going to get an MRi once a year too.

    I would so love to skip rads too, Frill. If my surgeon got clear margins and it wasn't in my nodes, why do I need rads? I know why, rhetorical question.

  • jensgotthis
    jensgotthis Member Posts: 937
    edited June 2016

    Frill, I'm feeling quite good right now. I decided to delay recon until after rads, and frankly I think my recon (Diep flap) will be harder to get through than the MX

    I hope none of you join the stage 4 club, but if you do there are so many more treatments than just a decade ago. So if you do, know that there is still hope. And also That here are incredible women on this site that will help you along the way. Don't be afraid of scans - what is, is and if you know what you're dealing with then you can make decisions at that point

  • LovesToFly
    LovesToFly Member Posts: 1,133
    edited June 2016

    (((hugs))) Jen. So true. What is, is and it's better to know.

  • Valstim52
    Valstim52 Member Posts: 1,324
    edited June 2016

    So true Jen. It's like the mammograms. Fear and dread does not change what is already there.

  • LoveMyVizsla
    LoveMyVizsla Member Posts: 813
    edited June 2016

    Jen, if you nodes were clean, did they explain how you got mets? I was here thinking since my nodes were clean that I'm golden, but maybe not so much. My husbands cousin has had BC with mets for 15 years and is still going. They keep finding new treatments for her.

  • Valstim52
    Valstim52 Member Posts: 1,324
    edited June 2016

    Not speaking for Jen's situation, but you will see on many of our BCO boards, many of our stage iv sisters, had clean nodes and lower stage bc, and later were stage iv some in a short amount of time. Some are stage iv what is called de nova from the beginning.

    Then there are those with dirty (still cancerous) nodes even after treatments, and they are here 5/10/15 years later. Or had all nodes positive.

    With BC you never know. 24 years ago with my first BC I was told I had a 50/50 chance of recurrence in 5 years.(based on what, who knows what the 'statistics' were at the time) So far that breast is fine.

    You just never know. I feel we are so individual you never know where the cancer has already gone, and can't be detected, if it will stay "asleep" or rage later. Or if it really was a one time thing, like my other breast.

    i just personally feel the media, and internet make it sound like if you have a lower stage cancer and no lymph involvement that can be seen you are cured. My MO calls it TV Breast Cancer. Real life if a little different. We know differently. A lot are 'cured' but so many are not.

    Just my 3 cents worth.

  • jensgotthis
    jensgotthis Member Posts: 937
    edited June 2016

    I had lymph node involvement which is how it got out of the breast and into my bones. The chemo has now killed the cancer in the lymph nodes. Just a little too late...I'm very optimistic for a long life

  • jensgotthis
    jensgotthis Member Posts: 937
    edited June 2016

    So you know how I said I was worried that my hot flashes were getting less so, well they are back full on lol! I won't complain again....I promise.

  • Paxton29
    Paxton29 Member Posts: 221
    edited June 2016

    Congratulations lol! They certainly are a treat.

  • MissBee123
    MissBee123 Member Posts: 186
    edited June 2016

    Jen so happy you have your hot flashes back! Not a sentence I ever thought I would utter but...

    I spent the night sleeping on our couch downstairs. Our thermostat is currently on the fritz and the repair guys don't come until this afternoon. I was so hot from my flashes that I slept on the couch because it's freezing downstairs! Blanket on, blanket off, blanket on, blanket off...

    Curious to have an informal survey: where do you all feel the most heat from your flashes? For me, it's the back of my neck and--oddly--the backs of my knees/calves.

  • jensgotthis
    jensgotthis Member Posts: 937
    edited June 2016

    Me too! Back of neck and back of knees. When they are at their worst, I am sweaty from the knees down. Weird

  • mltdd
    mltdd Member Posts: 87
    edited June 2016

    I feel my flashes the most in my face and scalp.

  • DFWFLYGIRL
    DFWFLYGIRL Member Posts: 146
    edited June 2016

    MissBee and Jen-I am right there with you all...Hot Flashes...head and neck. They have gotten worse in these two weeks post chemo..you all too? I went thru early menopause several years ago so it's not that....will these subside as time goes and body regroups post chemo? Wonder if the 90 degree temps in Dallas with my wig everyday is a contributor..lol lol:)))))

  • Frill
    Frill Member Posts: 311
    edited June 2016

    These hot flashes.....are they caused by the chemo, by the meds, by the chemo induced menopause? I haven't had anything like that. I want to keep anything like that far away from me, lol. Last year, or year before last, I had sort of started something like - way before the even thinking about cancer life....less like what I think of as a hot flash and more like .... once I got hot I couldn't cool down and was REALLY uncomfortable.

    No more cancer pressies! lol


  • LifeAloft
    LifeAloft Member Posts: 150
    edited June 2016

    Today is the day, my last day of chemo!!!! So so happy, even though #11 of Taxol has been a little rough, I know I have to get through this one and the side effects, this feels like a big milestone. Next is surgery July 12.

    Thank you ladies for all of your help and support!!

    P.S. My hot flashes have pretty much disappeared since I started Effexor.

  • Sheri64
    Sheri64 Member Posts: 113
    edited June 2016

    Congrats LifeAloft on finishing it is a great feeling to be done with that step.

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