August 2015 Chemo Group
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Yay for writing again, Kate! And yes, thanks for getting this thread started & moving it forward!
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Yes Kate you have done an excellent job writing to/with us! I might be joining you Wednesday on OS of some sort. Since my hysterectomy isn't until July 26th (two periods in between), I suspect a shot is coming for the meantime. I would be okay skipping it, my GYN was willing to put in a prescription but said my MO would have it in the office, so we'll see what he (MO) says.
Ladies! My driver's license expires this month! I have to have a picture taken--an ID memorializing me for the next four years with my crazy, short hair. Just a bit pissed off about this.... Stupid midnight revelations!
Plastic surgeon tomorrow. Get my surgery date for the reduction! Love lining up these last few details!
But then that stupid picture....0 -
Aw, thanks ladies! That makes me feel really, really good.
Musosgirl, three cheers to a big, big shot tomorrow. I'm just going to breathe and remember that my pain tolerance is very, very high. . . .
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Muso., theylet me wear my tacky red touque for my drivers lie ce photo. I would have been bald otherwise. In my town I can request a retake for $10. I might yet
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Molliefish, I was wondering if any of us had to do that DURING chemo! I told my sister if I was bald the wig would come out. I never wore it, don't even know where it is, but it matched my natural hair pretty well.
Have a slight fever tonight. Up to 99.3 last I checked. Hope it is just a fluke and I am right as rain in the morning.0 -
Hope you're feeling okay, Muso.
I am very tired of short, crazy hair. I wear a baseball cap when I go outside...not too attractive!
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I've been wearing my hair in a fauxhawk most of the time, or in a really messy (intentionally, since my hair came back more straight than curly) pixie. I mean, why not? Now I'm the flat-chested woman with the fauxhawk. . . I wonder how long it will be before someone goes all "bathroom police" on me.
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Kate, you are funny. LOL about the "bathroom police". My hair is pretty messy, too. It's curly.
Let me introduce to you Viktoria. me & few choir members decided Viktoria Charlie would be my nickname when I was losing hair. (Viktor being worrywart's name, & he's bald. Charlie for Charlie Brown, his nickname, & of course charlie brown got no hair neither). Anyway... recently we got a new trumpet player, whos' name, you guess it, ViCtor!! (& he's bald, too! Serious!)
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HOLIDAY! Spouse's 60th on Friday and we've taken the Bromptons to the Netherlands :-). Had my 16th Herceptin the day before we left and will have my 17th (of 18) three days after we get back.
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Too funny, superius/Viktoria!
Ms. B., looking good!!
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MsB, that looks like so much fun! And look at that blue sky! I've always wanted to see the Netherlands. . . .
I find it odder and odder that I'm only getting a total of 17 herceptin infusions. Everyone at the infusion center has counted them and seems sure that 17 is the right number. Just yesterday, the nurse said "number sixteen! second-to-last one!" Weird. Whatever. I'm happy to be (almost) done, and I'm pretty sure that not getting eighteen won't be the end of the world.
Scary moment in the infusion room yesterday: a woman was getting her third taxol, and about ten minutes in, she went into anaphylaxis. The nurses handled it perfectly, but it was terrifying for the woman's daughter (I think it was her daughter) when her mom stopped breathing. The infusion room has two sides, separated by a partitioned wall, and they moved us all over to the other side before giving her a shot of adrenaline and moving her to the ER. I could see all of their heads over the wall; every doctor and fellow and nurse in the place were with her. Before I could wheel my infusion pump around the corner, I caught a glimpse of my MO, who is normally very stoic, almost to a fault, kneeling down, holding her hand, and talking the woman through what was happening--it was almost touching. The whole affected me more than I would have expected; I had to sit and take deep breaths for a couple of minutes. I really felt bad for the woman in the chair next to me, who starts taxol next week. All of this came on the heels of the lot of us (patients and nurses, if not doctors or spouses/kids) laughing and carrying on, which made it especially dramatic. . . .
My own update is that the Zoladex shot isn't something that I particularly enjoyed, but it also wasn't that bad. I celebrated my bravery by eating an entire quart of local strawberries, which tasted like strawberries should taste, instead of whatever those things are at the grocery store.
A year ago today I had The Biopsy; a week later I heard "cancer, port, HER2, aggressive, surgery, chemo." I usually don't mark things in time, but all of this feels relevant, somehow. I woke up early this morning and reflected on What A Year It's Been, and noticed that my brain is already (or still) doing its protective-amnesia thing. By that, I mean that I remember events, and I remember feeling crappy, and I remember being terrified, but I can't call up exact experiences in all of their parts. It takes something like that gal's allergic reaction to make it seem real, even now. It's not like it never happened--it did happen, and it was real, and it changed me for good and bad--it just feels gauzy now, almost like I can't quite put words to it. If that makes sense.
I also had this thought yesterday: I never want to do this again, but at least I know what to expect if I have to do it again. Cancer was my single biggest fear. I spent a year looking down its barrel, and I don't fear it anymore. I dislike it, but mostly I respect it, and watching that fear fade has been transformative.
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Oh Kate! I hear you on so many things! The Lupron shot wasn't bad, but I don't really want to do that again. If the next few weeks go well I won't have too. I hope I get to go forward with the hysterectomy. I too treated myself after that shot--but I had chocolate pudding so nothing quite as noble (healthy). That amnesia thing happens to women who go through childbirth--it is why we agree to do it again. Two all-natural labors later and I say I would do that again. Pregnancy on the other hand... Can I be totally honest with you ladies about something? Cancer sucks. BUT I would rather go through ALL this cancer crap again than ever be pregnant again. And I would rather go through chemo again than deal with my PTSD flashbacks. And it is so frustrating to feel validated on this cancer journey when I am so easily dismissed on the other two. I have had women say I can have a great ministry to other young women who get breast cancer, and maybe I could, but my heart is with other women who have suffered trauma. My PTSD was very rudely dismissed by an in-law yesterday and I cried for a long time over it. Thankfully my MO and the infusion nurses have been very understanding and proactive.
I just added up my Herceptin infusions and I will end up with 18. No one has been counting them--my MO went by the calendar and it's a year to the week!
MsBrompton, you look great! I showed my DH your picture and said I wish I were in such good shape/tone. Maybe after I finish my surgeries, and it's no longer a million degrees outside, I can finally focus on exercising again.
I am still waiting on a date for my symmetry reduction and the latest word is that now my PS wants to schedule a single co-surgery with my GYN--but they do their surgeries on different days and I told his office that. (rolling eyes)
Kate, good luck this weekend! Once again we enter the great unknown together.0 -
MSBrompton-you are looking great.
Too all you ladies finishing up Herceptin, YAY!
Ovarian suppression-as long as my period doesn't return I will keep my remaining lady parts and no injections for me. My period is now 278 days late according the app on my phone. I did have a nightmare lastnight though, it was that I got my period again. Let's hope it doesn't come to reality. Not sure how it could return with the crazy hot flashes that I still get. I did buy a fan to put on my bedside table. It has made a huge difference. A combination of the white noise and the drying effect on my drenched body. I do get the odd good night sleep.
Kate-reading about your incident during your last heceptin infusion brought me back to my own reaction during my second chemo. It was terrifying, and the look on my poor daughters face when she walked up and saw all the nurses working on me. It was pretty scary. I do find that I also have blocks of time during the last year that are missing. I'm pretty sure it is the protective amnesia that you have talked about. Oh, and I'd love to be there if the bathroom police tried to stop you. I have zero tolerance for that kind of ignorance. They would see Mother Bear Dee in action, protecting their own. You don't mess with my tribe!
Musogirl-I'm glad to hear your shot went well. Anytime you want to visit Canada to cool off you are welcome. We have the heat, but it is a dry heat. I'm not sure with my hot flashes how I would handle a high humidex. I feel like a hot sweaty mess quite often. I also have to get my pic redone on my Drivers license. Was thinking the exact same thing as you.
Hair issues-I have found the best thing for me is to get regular hair cuts. If I keep it short and thinned out a bit it is easier to tame. My hair isn't really curly. The longer it gets the bigger it gets. I call it Kramer as it has a mind of its own. I can tame it with a blowdryer, small round brush followed with a straightner. I will be keeping it short. It is so easy to take care of.
Superius-congrats on making it to the one year club. In sickness and health....been quite the ride.
Thank-you Kate for starting this forum. I'm so glad you are writing again.
I hope you all have a wonderful weekend! I am flying out tommorrow to Winnipeg for my nieces grad. I'm thankful to be here and be able to celebrate with my family.
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Superius (Viktoria) have you seen the movie Victor Victoria? Very funny comedy about a woman who poses as a gay man to get a job (advise do NOT watch with worrywart...)
Scary anaphylactic incident, could have been any of us.
17 or 18 Herceptins, who cares, it can't make that much difference surely?
The UK just made a really bad decision, but let's not talk politics here...
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Hi, all. I love seeing your pictures and hearing the updates. I am so glad that so many of you are reaching the end of Herceptin infusions at last!
I spent last weekend celebrating my parents' 50th wedding anniversary. All three of my brothers and their families were in town (my sister wasn't able to come due to a sick kid). It was so nice seeing them all and it was a great way to close out a tough year.
I have a breast MRI scheduled on Monday and (so far) I am not worrying about it. Because I have dense breasts -- I suppose that should be breast (singular) now -- and my ILC was hard to spot on a mammogram I'll alternate MRIs and mammograms every 6 months. I'll be getting my port out next month.
Next weekend is my one year anniversary of being diagnosed. I plan to mark that day camping and riding with our friends.
I'm so grateful for the support you ladies have provided. Thank you to Kate for starting this group and for everyone who posts.
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Appt with Surgeon today. Got poked at <a.k.a. physical exam> He said although i have dense tissue, it's all clear, and it's not "super dense" & he had no problem doing the exam. So far so good. Next is CT Aug & MO Sept. & I won't have to see the surgeon for another yr!
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Superius, that's great news!
Cross-post with the triple-pos board, because I value your opinion more than you know:
So . . . I think Zoladex is messing with me.
I was doing really well on tamoxifen alone: the hot flashes were getting better, the mood swings had gone away, and I felt great! I had my first Zoladex last Wednesday, and now I'm retaining water, have hot flashes on and off all day, was up late into the night with dizziness and anxiety, and--get this--now my ovaries hurt. This isn't cool, and I'm pretty sure the 2% overall reduction in risk of recurrence isn't worth it. My oncologist was surprised that I agreed to it in the first place, for whatever that's worth.
I'm thinking of pulling the plug on it, but then again, maybe I should give it another month or two. Either way, I have to get through the next three weeks with the thing dissolving in there. . . I'm really tired of feeling like a science experiment, you know? Anyone have any thoughts on the matter?
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Kate I'm lucky enough (!) to be ER- so not having to take any of this but I do know everything is worse until your body gets used to it. I went through the menopause twice (once age 52 and once after stopping HRT) but all my awful symptoms finally settled down. I know that's not the same, but perhaps hang in there for a bit?
Feeling for you ladies on the rough stuff.
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Kate: The quality of life thing is a tough. I can't tell you about zolodex/HT but I can tell you about the effects of a hysterectomy/HT. It took me about six months to feel like I was myself again. During that time I had a lot of headaches,insomnia, hotflashes, depression. I also gained a spare tire around my midsection without changing anything else. did you do rads or did they decide it wasn't necessary? I can't remember. I am not sure how to tell you if it is worth it but I can tell you that if you look at the SOFT and TEXTA study that the side effects reported were prevalent and similar to what you describe. I think they reported it gets better at 6 months.
I know I ask this before but I have Chemo brain.
Can you remind me what your doctor said about Tamoxifen vs AI for Her2+ conditions?
Was he/she willing to test CYP2D6 test for tamoxifen resistance Tamoxifen Metabolism
What was the reasoning in not moving you to an AI with ovarian suppression vs Tamoxifen with ovarian suppression vs tamoxifen alone.
It might help me to feel better about my choice to switch to Tamoxifen as the AI was wrecking my health. Right now I plan 3 years of Tamoxifen then switch to AI. Its not ideal but since I had two different cancers. The left side could get me even if I choose to suffer the extreme side effects I had on AI to protect me from the right side. Also a heart attack and bone fractures are not appealing as I am 42 and Arimidex really weakens the bones. My cholesterol shot to 270 on it. It would sure put my mind at ease if I new I was a good metabolizer of Tamoxifen.
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exercise_guru, my MO isn't doing any blood tests of any kind, and that includes CBC and metabolic panel, for six months. She hasn't tested my estrogen level (and her fellow looked at me like I was insane when I asked about it), and she says that the CYP2D6 test is irrelevant in my case. I'm fine with that, overall, but I REALLY, REALLY don't want to be a hot mess for six more months and then find out that this crap is messing with me in more ways than just endocrine ways. It's such a fine line to walk, as are all decisions related to BC and its treatment. I may tough it out for a couple more months and just try not to think about it; that said, I'm also seeing my primary care doc and an OBGYN next month, so we'll see what they have to say about it.
My MO looks at it this way re: HER2+ and adjuvant endocrine therapy: there haven't been enough studies on the crosstalk between HER2+ and ER+, so we follow the clinical standard, which in my case is up to me. I have the choice: tamoxifen alone, tamoxifen with ovarian suppression, or an AI with ovarian suppression. I've read the SOFT and TEXTA studies, and I'm trying to weigh whether the small statistical significance is worth it in my case.
My reasoning for staying on tamoxifen is this: I'm 37, osteoporosis and heart disease run in my family (but no breast cancer--go figure), and QoL is important to me. My MO wants me to think about Femara after six months of Zoladex/tamoxifen, but I can all but guarantee that I'm going to say no, given that tamoxifen can exert a protective effect on the heart, the brain, and the bones. We've already tried to kill me six times with TCHP (okay, I'm being hyperbolic there), shot Herceptin into me sixteen out of seventeen times, microwaved my chest wall (yup, I went for rads), tamoxifen (which was a bear for the first two months), and now this sh**ty Zoladex.
If that mofo comes back, I'm gonna be absolutely irate. If I remember to be, that is. Thanks, estrogen-sucking drugs, for reducing my IQ by about 30 points!
Thanks, ladies, for enduring my ranting. I typically don't post when I feel like this--I'd much rather spread love and joy than be a Negative Nancy all over the place, but I'm fairly sure I need to get this out in a place where folks understand, rather than have road rage or yell at my partner or some such thing. Love you gals.
Edited to add this: a lot of this came on yesterday after I had a terrible experience getting an echocardiogram, of all the things in the world. Brand new tech. Sore, radiated ribs. Twisting probe and lots of pressing. Grrrrr.
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Kate thank you for taking the time to post here I was just reading the tamoxifen board. I think you and I have the same perspective about the AI. I don't want to discourage anyone really I don't but I tried two AI's and they near put me on disability. It was insane. I also care about my heart and bones. For now my plan is to stay on Tamoxifen until I fix my hands ( Arimidex/Chemo/OOphrectomy ) gave me horrible Carpal Tunnel in one hand and Dequervains in the other wrist. ) They want me to wait until I finish Herceptin for a few months to see if it improves before they try surgery. I get you on the IQ deal, my memory is shot. I just started to feel a little more normal last week which is almost 7 months past Oophrectomy.
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I had my MRI yesterday. Left boob is all clear, but the radiologist saw three tiny nodules in my right lung. WTF?? My MO has ordered a CT scan and said not to worry. After freaking out I did a little research and I am really hoping it's just some scarring from radiation or a cold. I thought I was done with this.
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Kate, I have decided I am not willing to do the Lupron long term. It hasn't really bothered me, but it's another med with tons of side effects and not recommended long-term. Not sure if that applies to Zoladex as well. I am scheduled for a hysterectomy, and overall am okay with that decision. But I still wonder if the risk benefit is worth surgery. My MO does not give me the percentages and would not say if I could do Tamoxifen alone. But he is really pushing for Lupron indefinitely and I am just not okay with that option.0
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muso I think if you look at the studies the key is whether your period comes back after chemo. There are enough studies that seem to agree that if Chemopause is permanent it improves recurrence rates significantly. Women over 40 have somewhere between a 50-80% of being in Chemopause permanently ( I have heard both numbers). I believe in the SOFT study only allowed women who did not stay in chemopause to enroll. For my rt side I did not have a mamoprint or a Ki67 Chemo was determined by my left side so it is hard to say which group I would have fallen into and therefore whether the addition of AI even provides any benefit. If I were over 46 I would just take the Tamoxifen .
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VickiRides I know that "incidental" tiny spots on MRI are very common. I read somewhere that if 25000 people had a full body MRI, only 80 would come out normal but most of the "abnormalities" would be benign. I'd be worried too if I were you but it is probably nothing.
I guess we're all going to be jumpy about tests for the rest of our lives...
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OH Vicki What stress! Keeping you in my thoughts. Definitely go ride your bike!
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Vicki, I have a nodule, too, that they found when they did a routine chest x-ray after placing my port. I'm told it's no biggie and that most people have them; we're gonna check it every year to be sure. My NP also said (and I found this a little weird) that, because I've lived in the Midwest for my whole life, she's surprised I don't have more than one. Something about birds and fungus. I confess to not remembering, and my fingers are crossed that yours are also of no concern!
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Thanks, ladies. CT scan is scheduled for Thursday. Then I plan to spend the weekend (and my one-year cancer anniversary) on my dirt bike.
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Exercise-guru, I am 35 and my periods came back 3 months after chemo. Very heavy and every three weeks. I keep saying chemo just pissed off my ovaries and they came back with a vengence. Guess it's best I evict them, huh?0
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muso that sucks if you can schedule the oo at a time that you feel strong to recover and can do the keyhole or DaVinci then you will probably have an easier time. The raging menopause was wretched. I had thought of doing Lupron for 6 months so I could know how my body handled AI and then the OO but my doctors wanted it 5 weeks after chemo and I wasn't really in great shape to handle it piled on with the AI. I started AI 3 weeks after surgery8 weeks post Chemo and it hit me hard. I will probably have to revisit all this on September after my hands.
Personally I would take the Lupron for summer. I would play and and enjoy the heck out of life and do the surgery in the fall when the weather sucks and I could miss work more easily. I would lift weights and get my strength up. Just trust your instinct I believe we each have something in us that helps guide the timing of these things. Plan on 4 to 6 weeks of baying your abdominal muscles for me it was longer because of the TAH. I think the more fit you are going in the easier it is to be active when the AI kicks in. I Had lost so much muscle In chemo that I it was really tough to workout through the joint pain. I went on gabopentin for nerves and gained 15 pounds in two weeks. I am just now feeling Ike I can get on my bike and start doing lunges etc. I am going to have to start at the silver sneakers class and work my way back. Of course I had reconstruction at the same time so I may just have internalized it all and dumped it with chemo.
I truly hope your experience is better.
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