Starting Chemo March 2015

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  • ksusan
    ksusan Member Posts: 4,505
    edited December 2015

    I hope that's the extent of it, Sharon!

    I've only gotten really stupid comments from strangers (Woman in exercise class, "Did they get all of it?" Me: "Gee, I sure hope so!") and just a couple from a relative with their own cancer issues. All of my coworkers and friends, my family 99.5% of the time, and even my acquaintances have been pretty in-check.


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  • Trvler
    Trvler Member Posts: 3,159
    edited December 2015

    People are doorknobs! I love that one.

    Never: I am so sorry you EVER got those ads after that happened. It is why I never wanted to give CVS my card when I picked up meds or sign up at the cancer wellness center. I NEVER wanted any cancer related marketing.

    Sharon: Glad to hear that you found your car and got some shopping in. Keep us posted.

    Leigh: I hope this year is as good for you as last year sucked…if that makes any sense at all.

    I guess now is the time we get asked about being cancer free. I got asked today. Not sure really how to explain it. Not sure I even understand it when I ask my doctor how we know and she says it is how I feel and tumor markers….isn't it too late by then? The only thing that made me feel bad this year was the cancer treatment. Other than that, I felt f--ing awesome.


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  • KBeee
    KBeee Member Posts: 5,109
    edited December 2015

    I am waaaay behind. I have been working tons of hours to distract myself. The dumbest thing I hear this time around is "did they get it all this time?" ... Like they left a chunk behind or something. I just say "I had clear margins this time, just like last time." Oh well. They mean well.

    Sharon, it sounds like good news so far. Hopefully the first of lots of good news this week for those of us hanging out on the ledge. 3. More. Days. Of course, that's just til my appointment. I won't have answers then

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  • eheinrich
    eheinrich Member Posts: 792
    edited December 2015

    awwww T - thank you.

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  • SueH58
    SueH58 Member Posts: 632
    edited December 2015

    So I thought I was up to date, but somehow missed Sharon losing her car (?) and Katy's difficulties with Tamoxifin. Katy, what happened? You know my MO said that with my age and the fact I haven't had a period in 2 years I am considered menopausal. So I am on an AI. It seems that would be safe for you if you had issues with Tamox.

    Sharon--waiting to hear final results from your docs. Hugs!

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited December 2015

    Sue- I am 58 and hadn't had a period for several years, but my MO is a stickler. He ran two blood tests for estrogen before I started chemo. A fish sp? and estradiol. Both were above the minimum limits advised for being on an AI. So his plan was to do the Tamox for some period of time, then switch over to an AI. After four months on Tamoxifen my liver enzymes quintupled and I have been extraordinarily depressed. They stopped the Tamox for a month and will do the labs again. At that time they will also re-run the estrogen tests. They are pretty confident (as in they have seen it before) that the Tamox is the culprit. If my labs are normal or clearly on their way towards normal, we will probably find a way to switch to an AI (if estrogen us still too high an ooph could be on the table).

    If the liver is not improving, I have bigger problems.

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  • SueH58
    SueH58 Member Posts: 632
    edited December 2015

    Oh my gosh, Katy, so sorry! Glad you're doing better now, and hopefully you can move to an AI. I've seen on the board that there is also a drug to shut down your ovary function, and since you're so close, it may be a good alternative to an ooph for a short period of time.

    Hugs to you, Jack and, of of course, Tutti :-)

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  • Italychick
    Italychick Member Posts: 2,343
    edited December 2015

    My husband just got in big trouble lol. I was showing him my "Roman emperor" bangs, combed down how goofy they looked. He said I looked more like a three stooges character. Big trouble for him lol!

    Yes, Katy, there is a shot you can get to suppress the ovaries. I think it is called Zoladex? It's given once every three months as a shot to suppress the ovaries. Maybe that would work for you. I have a pen pal who is young, and she went with ovarian suppression and an AI. I guess there was some study that it could be more effective than Tamoxifen in young women, and she didn't want the risks associated with Tamoxifen.

    http://www.breastcancer.org/research-news/ovary-su...


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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited December 2015

    we have discussed the Lupron twice. They don't recommend it for me due to SEs. Hopefully the estrogen will just be low enough to take the AI.


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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited December 2015

    Specifically, Lupron can be responsible for depression, mood changes suicidal ideation and liver problems, I have to be very careful and very sparing of anything at all added to the med mix for those reasons. They don't really want to even consider that route. Asurgery in my case would be preferable. Being a bipolar with a history of liver issues complicates everything.

    However, hoping that won't be necessary.

    The SOFT trial was the one where they compared OS + AI vs Tamox, and there was a definite advantage for younger women, (in their 30s, not at my age) but in my case, they wouldn't be dong it for the advantage of the AI, it's simply that I don't appear to be tolerating the Tamoxifen.

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  • shaz101
    shaz101 Member Posts: 718
    edited December 2015

    I'm all good! Far out that was so stressful. He said in the future i can bypass the GP and go straight to him as they will run tests straight away. I'm having a glass of red bubbles to celebrate.

    Eileen. You always look very beautiful in the photos I've seen. I feel like I'm in drag in a dress. But i wear them more to try and feel feminine.

    Theresa is your hubbie still alive?

    Hugs to you katy answer everyone else sitting on the ledge.

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited December 2015

    Oh Sharon! Whooohoooooo!!!!! I am so relieved. I know you must be too. And I'm so glad you can take a more direct route should you ever have a scare like that again. Which I hope with all my heart you don't.

    🎉🎉🎉🎉🎉💃💃💃💃💃💃💃🎉🎉🎉🎉🎉🎈🎈🎈🎈🎈

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  • so-she-did
    so-she-did Member Posts: 202
    edited December 2015

    Hey there! It has been a long time since I checked in on the boards. It is so good to "see" you all again. I haven't gone back very far in the posts but it sounds like Wednesday is the day to send good vibes out to the universe. I'll be thinking of you all. Sorry for my long absence. I've been having some trouble with anxiety and reading the posts was setting it off. Anyhoo - doing better lately so I wanted to check in. I've missed you guys!

    Getting ready for Christmas this year is so different than last year. I barely even remember last Christmas. This year my MIL is coming for the long weekend before Christmas and I'm really looking forward to it. It is our secret since she is surprising my DH and girls. It is so difficult to keep the secret since DH keeps wanting to plan shit for that weekend. We get along famously so it'll be good to have her here.

    We had some friends over last night for a pizza and game night. They showed up with a bottle of wine called Victorious and then you peel the label off and the hidden label has the pink ribbon, is called Boobalicious, and says Save the Tatas at the bottom. I was having a hard time even with the "victorious" part (I sure don't feel victorious) but the hidden label was hard to swallow. So many things I wanted to say but I am totally a people-pleaser so I tried to say an enthusiastic thank you and then poured myself a big glass and moved on.

    After an ultrasound showing one of my nodules had grown in 6 months and two biopsies later I can finally say the thyroid nodules are benign. God, I love that word. Benign. I wasn't even that worried about it since nodules are common for Hashimoto's but that one word was so good to hear. Hoping that benign will be the word of the week for everyone.

    Hugs to you all!

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  • Trvler
    Trvler Member Posts: 3,159
    edited December 2015

    Great to see you, Amy!

    Sharon: Yeah, yeah, yeah!!!

    Katy: What are your percentages of ER and PR? I am in the camp that if Tamoxifen makes me miserable, I will stop taking it. I might be in the minority, but I would rather have 10 good years than 20 sucky ones. I guess it's only for 10 years but it also sounds like some health risks to you, too.

    Karen: I guess having been through this twice, you are no stranger to the stupid questions. I would be tempted to say say 'No, I asked them to leave a little behind' but of course I wouldn't. :)

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  • Leighrh
    Leighrh Member Posts: 317
    edited December 2015

    Hi Everyone... Just catching up on the thread.. you ladies were busy over the weekend.

    Thank you so much for the BDAY wishes... Crossing fingers and toes that year 43 goes WAY better than 42!! :)

    Woke up this birthday morning with my left eye swollen..... no idea what it is.. prob sinus... but at 5:30am I of course convinced myself that it must be mets somewhere............... this new life of questioning everything SUCKS!!! Its prob damn allergies and I get all worked up.... I am over it now and going to enjoy my bday with cake, a good pearl harbor day workout at my gym and a big glass of wine... LOL


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  • ksusan
    ksusan Member Posts: 4,505
    edited December 2015

    All right, Sharon!

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  • slothabouttown
    slothabouttown Member Posts: 449
    edited December 2015

    Sharon I am so happy for your good news. I hope it's the first in a long line of positive outcomes this week and next for everyone here who is worried and waiting.

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  • KBeee
    KBeee Member Posts: 5,109
    edited December 2015

    Great news Sharon and Amy!

    Hoping I get some good news too this week. This is definitely the most stressed I've ever been; I usually am pretty laid back about things... Good or bad. I guess I was just hoping for a little more time before getting thrown onto the hamster wheel of worry

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  • so-she-did
    so-she-did Member Posts: 202
    edited December 2015

    Great news, Sharon!

    Happy Birthday, Leigh! We are the same age. Hope this year treats you right

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited December 2015

    Allison- I am 85% on both ER and PR. It really scares me, the idea of not having the protection. But really, the way I was feeling.....that would not work out well on a long term basis.

    I was doing a little research last night and found several articles about some small studies that had been done using Tamoxifen to control bipolar mania. I found that amazing, as that is the hardest part to control. Only lithium has had long term success doing that, and I was hospitalized twice for lithium toxicity, and can't take it. But I can see how Tamoxifen would be effective in this. It effectively squashed any and all joy from my life and fast! Yeah. Not doing that.

    I can't take anti-depressants anyway, (no bipolar person can, because it triggers mania) but I am so done (and apparently, so is my liver) with taking one pill, and then another for the SE, and something else for that. It was one thing to do that during chemo. That was four months for me.

    Just to give an idea, I have had the thought several times in the last week that I might rather do chemo again than 5-10 years feeling like this. I always thought I would be able to suck up hormone/endocrine therapy, and that the SEs really couldn't be that bad.....and I can't prove that the mood problems were related. But the liver issue is proof in a test tube, since nothing else will have changed.

    I have had some very difficult conversations with myself about the fine lines between wanting to live, declining a treatment that I know will improve my chances of that, and not wanting to live under certain conditions. At what point does the will not to live "that way" become pathological?

    Some very difficult questions, and mostly rhetorical. I don't expect anyone, even my shrink, could give me the answer to that one.

    Good morning all! Hope I didn't spoil anyone's Monday

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  • pboi
    pboi Member Posts: 663
    edited December 2015

    Katy...I was on the Lupron for 4 months, and the SE bothered me a lot. Awful! So glad to be off the Lupron and no SE with the oophorectomy for me. Oophorectomy surgery was laparoscopic with 3 tiny incisions, for me I was sore after but overall a very very easy recovery. Hope you don't have to do it, but if you do it's not so bad.

    Woohoo Sharon, great news! And thinking positive for good results for all waiting this next week or two

    Happy birthday Leigh! Enjoy your day!

    PB

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  • pboi
    pboi Member Posts: 663
    edited December 2015

    Oh Katy, it just brought tears to my eyes to read that you would rather do chemo than take these meds for 5-10 years. It really hit me in the heart because I was just thinking the other day how thankful I was that chemo was over. I have meds and side effects to deal with now, but they were not as bad for me as chemo. I do understand why you feel this way. I know Tamoxifen didn't work out for you. But give the AIs a chance. I was so scared to start after hearing about the side effects, but they have been very manageable so far. Really it could be like that for you. You won't know until you try. Wish I could run over and give you a hug...

    PB

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited December 2015

    thanks PB- your support means so much. Thanks for understanding. I will if course try the AIs. But I know they can cause the same SEs wrt mood. It's all related to taking estrogen out of your life. But living at the bottom of a 50 foot well with no way out isn't going to work. I'm still hopeful, but trying to be realistic and prepare.


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  • pboi
    pboi Member Posts: 663
    edited December 2015

    Katy...you are absolutely right. The estrogen sucked out of me now has definitely affected my moods, and it is something new for me and something I am trying to work through. It sucks but I can't not take the AI and feel good that I'm not doing everything I can for myself. So trying my best to not live at the bottom of the well, but finding ways to get myself pulled up and out of there.

    PB

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  • ksusan
    ksusan Member Posts: 4,505
    edited December 2015

    Katy, my mother declined to continue after trying tamoxifen and 3 AIs. She was able to manage on Femara with medication for the medication-induced side effects, but at the 5-year mark said "no more." Have you asked your MO what the absolute benefit is for you? Not "Decreases your chances by x percent," which is all well and good, but only tells you about a percentage of some other percentage that represents your risk without it. In other words, if you have a 12% chance of recurrence without hormone suppression or blocking, and tamoxifen or an AI reduces that risk by 50%, you've reduced absolute statistical risk by 6%. That is a more useful number to consider than "reduces your risk by 50%" without hearing "50% of what?"

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited December 2015

    thank you Ks- I will ask the question again in those terms.

    What I believe I've been told is

    1) my risk was/would be reduced from 30% to 20% by HT, another 4-5% by chemo.

    2) my Oncotype dx score was 30, very high intermediate, which assumed 5 yrs of Tamox.

    That's why I did chemo. At the time I questioned it for so little %. I'm awfully glad I did now, in case it turns out I can't tolerate any HT

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  • rleepac
    rleepac Member Posts: 755
    edited December 2015

    Sharon - so happy for you!!!

    Katy - keep doing your research and working with your MO. I'm sure you will come up with a good plan. Psych stuff sucks and there just isn't any other way to describe it.

    I've been on Tamoxifen for about 2 weeks now and I'm not sure I like it. At first, it really affected my mood but that only seemed to last a few days. Then I started getting really achy in my back, hips, and knees. It comes and goes but I can't say that I've felt 'well' in 2 weeks. I've heard it can take 3 months for your body to find some stable point on Tamox so I'm not giving up yet. Also will be having some lab work done next week so I'll make sure it's not affecting my liver.

    Bekah

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  • rleepac
    rleepac Member Posts: 755
    edited December 2015

    I'm required to complete 50 hours of continuing medical education every year to maintain my license. This year has been a bit of a wash (heck, I don't even remember half the year!) so I'm furiously trying to get caught up before 12/31. Only 12.75 hours more to go...

    Too bad I can't count personal experience as a cancer patient! I've had way more than 50 hours of education throughout this year!!!

    Bekah

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  • ksusan
    ksusan Member Posts: 4,505
    edited December 2015

    Can you do Medscape CMEs? When I'm short, I can fill in there with 15- or 30-minute segments. I tend to pick non-opioid pain management strategies as my topic.

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  • eheinrich
    eheinrich Member Posts: 792
    edited December 2015

    Katy, the possibility of not being able to stand the mood SEs from tamox is one of the reasons I did chemo w/ an oncotype score of 18. I've been very fortunate that my mood hasn't been effected. Bekah, I had terrible hip/leg pains. My MO had me come off of it to see if it went away and it did, but I started it up again & it hasn't returned (yet?).


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