August 2015 Chemo Group
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Oh heck, bumpy roads ladies!
Kate, how "neutropenic" are you? Are we talking the red flag stuff or just a bit of a dip? A 'trend' downward does sound kind of sinister but presumably if they stop whatever drug is causing it, you'll recover quickly? I've only been neutropenic once and I felt lousy (as well as being scared about what was going to happen). I remember my oncologist didn't think there was anything to worry about (they do get blasé I guess...). Hope it settles down.
Musogirl, sounds like something in your body is protesting at something! Hope tests come out OK.
And as for worrywart... (he gets a cameo part in our movie of course)
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My ANC is 1.1 or something like that, and my platelets are just below the cutoff for "normal." So we're not to red flag, but continuing a general trend that's disturbing, to say the least. And to think that my MO wasn't going to do labs for another six months until I presented with pelvic pain the other day.
Back to playing the waiting game. How I hate not knowing. . . . I feel fine, physically. Just crampy and scared.
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Kate I believe in you. This toshall pas
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Kate hang in there. If it was leukemia there would have been abnormal cells present when they ran your CBC. The analyzer not only counts cells but differentiates between the different types of WBC present. Remember you got this!
Why are most of us having a tough time the last few weeks? Is it a coincidence or part of our chemo detoxing and our bodies trying to recover?
My brain is still messed up...I am having a terrible time remembering anything. I made plans with some friends for this evening and communicated them with my DH. He then reminded me of his 30yr high school reunion tonight. I feel so stupid when I can't remember. I also feel stupid when I talking to someone and can't think of the right words and stand there stuttering. Scream.....I want off this ride!!
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Sounds not too bad Kate but I know what you mean - awful that you've had a blip just as you were about to spread your wings again. I'm sure they'll find out the cause and sort it out. Hang in there!
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Dee, I am right there with you on the brain thing. I felt like a stammering fool in the hospital this week--which did not help in communicating with the doctors. The nurses were much more patient.
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muso I am glad you were able to get your port out. Hope you feel better
Kate sending good vibes. My. Mind goes places like that too.
Ladies if you get genetic testing at least try to get the 6 panel with palb2 and chek2 there is a company that guarantees 100 out of pocket if your insurance won't pay. It covered mine and knowing about the palb2 did make a difference in the ovaries choice. Especially for you gals under 50.
Well arimidex gave me carpal tunnel and it looked like now that I am off it I am still stuck with it. I will give it another month and then schedule surgery if it doesn't resolve . I too need to get my port out as well. I am going to do it under local in my BS office. Haven't scheduled it yet. I would actually leave it in for a few months but it is still tender and hurts sometimes I wonder if there is localized inflammation around it. Big minus was riding Rollercoaster had to forgo the loopity loops.
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Thanks, ladies. I've settled down a bit and will give a report when I have news. In the meantime, I'm off all my supplements and eating healthier again.
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I meant to post about the hip ache deal. At 6 weeks of tamoxifen my hips started to ache but it goes away quickly if I swim or exercise.
This is nothing like Femara and arimidex where it felt like a giant was crushing my low back and hips. Exercise did nothing for it.
I think if I recommended anything to it would be to have a solid exercise plan implemented before switching to AI then maybe you could trudge through the first few months if the bone pain kicked in. Also maybe you will have an easy time on it. I am going to try anastrozole eventually but I like that tamoxifen protects your bones and heart more than AI
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Musosgirl, I am glad they got the port out. How are you feeling?
Hang in there, Kate. Waiting for answers just sucks.
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Sigh. Waiting does suck, more than I can convey. Fortunately, I know that every one of you knows what I'm talking about. I'll keep y'all posted as I have news. Let's hope the news is good, huh?
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Hi Ladies! I'm still catching up on everyone here and I'm so sorry to hear some of the struggles that you are still enduring. My "struggles" at this point seem pretty superficial compared to some of you.
Big hugs to you Musogirl.
VickiRides - Glad to hear the good news and of your upcoming port removal.
Kate - don't go down that rabbit hole. My blood levels were all over the place a while after chemo and I know it's hard not to, but try not to think the worst. You are in my thoughts.
I officially tossed my wig last week. I know I was later than most, but I really had a hard time going wigless. I never realized how attached to having long hair I was prior to losing it all. My husband says he can already see a huge weight lifted off my shoulders and it feels very nice not to be sweating under that thing during these hot months!!!
I've been reading that most of you are on Tamoxifen, but I went the AI ovary suppression route. I take my Femara at night and don't really feel a lot of the negative symptoms [yet] that some people mention. I do have a lot of joint pain though, my knees are rickety feeling. Just like you Dee, they crack sometimes. My only real issue is elbow pain that started during chemo and has not let up. Of course my brain is going down that rabbit hole too. (sigh)
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SoCalGirl, what is with these damnable rabbit holes?
I'm all over the place. One minute I'm fine, and the next I'm in tears. Some of that can probably be explained this way: we keep messing with my hormones, and it turns out that hormones are kind of important. But where do I go?
Back pain = mets (couldn't possibly be caused by PT or Tamoxifen). Pelvic pain = mets (even though Zoladex can cause the ovaries to go bonkers at first). Leukopenia = mets or something worse (even though Herceptin, Tamoxifen, and Zoladex can all cause that, and carboplatin is known to cause problems for up to a year). Jeezy Pete, I need to get a grip!In the words of my MO, via her nurse: don't worry.
Okay, MO, I'll do my best.
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Kate, I would say try not to worry, but I am questioning my decision to keep my breasts when I am willing to take out my uterus/ovaries. Am I leaving a big mass of cancer possibilities in my body?
Just a little rant: I have called and told my MO's nurse 3 times I am having surgery (left side reduction) August 3rd so I can't come in for Herceptin August 4th. She keeps calling to tell me they aren't rescheduling. I might even still be in the hospital! I did ask if they can do the infusion in the hospital after my surgery--PS is fine with that if it is possible.
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Musosgirl, did you do rads? I can't remember. Thanks, Tamoxifen!
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Kate, yes I did. I updated my profile but I think I forgot to make it public... So lumpectomy with radiation.
Finally talked to the nurse and got the Herceptin worked out--delayed one week. Not the solution I was hoping for--my insurance will not approve Herceptin in the hospital while I am there for surgery. (WTH?!) I am so bummed to be extending treatment even just 7 days. 5 more weeks--I can do this.
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Hi Kate & Musosgirl, Thinking about you 2 today. Mine is not so much as rabbit hole. more swinging like pendulum (from some pretty crazy fantastic stuff, to totally negativity)
I heard back from my MO this morning. We will talk about possibility of Lupron Sept when I see her. She said that's one thing she mentioned before Chemo. OK. I guess she did. but I thought at the time it was more like "protecting the eggs" or something...
Kate, I remembered you mention you would be doing the genetic testing soon. Have you? Or are you waiting (oops) after all these stuff resolved?
Exercise_guru I think my insur has the 18 panels. will have to ask what exactly.
MsBrompton WorryWart has something new every time I see him....
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SoCal, I also take Femara. I'm quite achy, but it's difficult to tease out what's Femara pain & what's normal post-BC treatment achiness.
My MO only had me take a blood test to determine whether or not I'm in menopause, and based on the numbers, he said I was fully menopausal and could take an AI without ovary suppression or ooph. Yet it seems that most of you here do more than take a blood test. Why is that?
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Next to last Herceptin infusion today. Granted I have two surgeries before the last one so it feels more like a mountain in front of me than hop, skip, and a jump.
We had horrific storms here today--we had a large tree split in two, two fences blown over (not knocked down by the tree), and power is out to over 60,000 people. My sister and I loaded up our families and crammed into my mom's house--she bought a generator tonight. They are saying it could be 5 days before power is restored, and temps are climbing to the 100's this weekend. My husband had to load up his gear and go work at his mom's house--tv production waits for no man. Not the best weekend to have the Herceptin flu--got the big D too despite the slow infusion but for now I'll blame stress.
At least my heart is calming down! Not perfect, but MUCH better with the port gone
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Morning ladies. Thought you'd like this anecdote. Last night 24 year old son (a medical student, celebrating end of exams) stayed. This is him making a late night snack of naan bread with peanut butter, washed down with Baileys, after drinking all day and eating his body weight in curry. I got up this morning and found that he'd been rummaging in the medical cupboard and found the bag of 'emergency medication' I got when on chemo. He'd helped himself to paracetamol, codeine, naproxen, anti-sickness, antihistamine and even face cream. He has not yet emerged....
I suppose "palliative medication" has its alternative uses!!
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MsBrompton, your son does things I would have done in my 20s! Good for him. I hope he emerges intact.
Musosgirl, I'm glad you and yours are safe and sound, and that you're feeling better post-port. Hang in there!
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That's some scary weather, Musogirl. I am glad you are all safe.
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Okay, y'all, today's CBC and CMP look better. We're trending back in the right direction, and my WBCs are back to where they were in March. Platelets in normal range, and CMP is *perfect* (thanks, liver and kidneys!). I'm still mildly neutropenic, but whatevs. Hand washing FTW. I guess I'll be getting my last (!) Herceptin next week. . . .
Whew.
Alien pellet #2 is in the books--I mean in my belly. DAMN, THAT IS ONE BIG NEEDLE.
How's everybody doing?
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Yahoooooo Kate!!! keep it up! (what is an alien pellet? i must have missed it, I don't like the sound of it). Are you feeling good? That is what is important to me. Feeling well. I can rule the world when I feel good.
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Ugh! You say alien pellet (Zoladex, molliefish) and it makes me so glad I scheduled my hysterectomy. Then I think "oh, I'm officially starting menopause next Tuesday" and I freak out and wonder if Lupron really is that bad. We are too young for these decisions, dammit!
5 days. This decision has been the most difficult by far... My gut says it's the right thing but my inner fraidy-cat won't shut up
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Yay for CBC. But Icky for big needle! Kate, are you doing that yourself?
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Superius, heck no--my infusion nurses do it for me.
When the other people in the infusion room see it and say, "whoa, that's a big needle," that means it's a big needle. These are people who are used to having their ports accessed. . . .
Honestly, it kind of makes me feel bad-ass, but Musosgirl, I'm with you. I have an appointment with an ob-gyn in the middle of August, and we're going to talk about options. I'm not planning to switch to an AI yet (tamoxifen for 3-5 years, and then we'll see), but . . . right, I'm pretty sure we're too young for these decisions. My mood swings agree.
Molliefish, I feel good overall. And you're right: that's what matters!
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Kate, brilliant news!
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Kate so glad to hear that your levels are stabilizing. Wow sucks about the big needle. uhhk
musogirl: I stressed far more about that surgery than my dbl mastectomy. I think it is because I had some "choice" in the decision and because I was terrified of the unknown and had a long time to think about it. Be kind to yourself. I am 6 months out now and things have stabilized. I have a better idea which side effects I am going to have to live with for the rest of my life and which ones were brutal but short lived. hystersisters website was a good resource for me. Now 6 months out I have some hotflashes and insomnia but nothing like before. I also have to work hard to stay positive and not think crazy depressing thoughts. I had thought of doing the shot for 6 months and then the hyster so I could get used to the SE of menopause but because of the Gene results the MO GYN wanted me to do it 5 weeks post chemo. I actually regret going on AI so soon far more than I regret the hyster. I am amazed more young women didn't drop out of theTEXTA studies just because of the one two punch of doing AI and OS immediately together
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Great news Kate! I think my ovaries are dead. I had some cramping after I finished chemo. But I think Tamoxifen has made them go to sleep. I will try and keep my last girl parts in tact. Not that I really need them, except keeping my uterus means I will have a few more years where I won't pee my pants when I sneeze. I need something to hold my bladder up.
I have been going to Pilates twice a week. I am loving it! It is much gentler on my body than my old weights routine was. I find that my body doesn't recover from a workout like it used to. As I have said before, I feel like I am 80. My joints seem to be getting worse instead of better. I am committed to keep moving as I don't want to cease up.
I am trying to enjoy each and every day. I feel like I missed last summer so trying to keep active and enjoy the outdoors. Had lunch today with a friend that is going through chemo. She is has finished 3/8 cycles. I also had another friend Dx last week with IDC. She is trying to decide her game plan re surgery. Flashbacks to myself a year ago. I am so glad to be on this end of treatment. But why does this not feel over? I guess it is all part of the process.....healing..breathe in through the nose and out through the mouth.
Much love to all of you
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