August 2015 Chemo Group
Comments
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Wow, BlueFrog, your wig looks very similar to your original hair. In those cute photos, it looks real. Renews my interest in wigs. I ditched the idea at first, was afraid a puff of wind would blow it away or something. I felt oddly insecure with a wig. But you guys here wear them so well...am feeling brave to shop for wigs again.
Sloan15, the MM didn't eliminate headaches, but this time around they were less "sharp" and not as painful:-) MM definitely mellows pain and discomfort, and eases nausea.
Kate, glad the 2nd trip down the chemical trail wasn't as harsh (despite the uncomfortable scare to your important bits below the waterline. I crossed my legs while reading that entry!) And Thank You for the vaporizing idea for using MM. OMG. Why didnt i think of that?! Have been offshore too long, out of touch. You're a genious- I'm gonna hug you and pat that perfectly proportioned fuzzy cranium of yours! Smoking IS harshly irritating but i dont want to eat MM and I was feeling discouraged. Have that yuk-lung scratch feeling. No more coughing up hairballs, Off to the "vape" store I go...
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Is MyRisk through Myriad? Call the company; some offer discounted testing for people whose insurance won't cover.
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birdysmom, be sure to get one that will vape loose leaf! Good luck. It's 100% better than smoking.
ksusan, good call; it is through Myriad. I'll give them a ring next week. Thanks.
Happy Friday, ladies!
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Regarding cost of Neupogen/Neulasta. They told me my hospital did not use Neulasta due to cost. I was given Granix to treat neutropenia, I believe it is a generic drug for Neupogen. I believe it was less costly and worked effectively instead of Neupogen. However, I do not really know the cost, but was told it was cheaper. I'm sure it's all expensive!
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Granix is "bio-similar": http://www.ashp.org/menu/News/PharmacyNews/NewsArticle.aspx?id=3775
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@Kate. I think, Myriad can set up a pmt plan. Can't remember because they contract with my ins.
I have seen a price of about 6K for Neulasta. Makes me happy all my deductibles are met for the year.
@deeratz, even though it is bittersweet, ok depressing at least for me, sounds like the shaving party was fun.
@Muso, bite yout tongue about Christmas. I was seeing it at my job back in May and usually will see it til end of August, but with surgery in July I got to miss most of it. Although when Christmas is here that means I am almost done with chemo if I have no setbacks.
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Thanks for the info about Granix, ksusan. I had never heard of it until they used it on me.
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Good morning\evening Ladies and gents if there are any lurkers. Happy belated Birthday Musogirl.
Being in Ontario and a cop kinda rules out MM for me. Thankfully my SE have been very manageable so far. I'm as happy that it is going so well.
To all of you working, and especially you teachers going back, well done. Be careful, but have fun. I have been provided a couple of new assignments so I work at my home office when I can. I went into the office to get some more files today and it was nice to see my colleagues.
I did get my hair shaved off. Had a bit of freeze when I got there. I really didn't think it would be that busy and there we tons of young ladies there who had tons of beautiful hair. I didn't want to be taking my cap off. My stylist is a saint he took me in the back and we shaved it privately. I instantly felt better. My husband says my head looks like the dogs belly when it rolls over for a scratch. You know with the smooth skin and the black and pink skin pigment. I have lots of patches of dark brown stubble. Not nearly as much grey as I thought. I've coloured my hair for sol long I wasn't sure. If I can figure it out I'll post a picture of it.
We went to the game and had a very good time. I wore a multicolour blue cap I got at the hospital gift shop. It was a little warm and I couldn't wear my new Jays cap so we'll just have to go to another game.
I have my second infusion of TC tomorrow and a neulasta on Saturday. Managed to take my dex properly today so no bolus of steroid before the infusions. Not looking forward to the ice pack but I know it's short term pain long term gain, and it will keep me busy for an hour. I'm pretty sleepy so I will chat with you all soon.
Take care everyone, Nikki
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Tazbear--haha! I had two severely hyperemetic pregnacies that went through the autumn and ruined many holidays for me. (as much as I hate Chemo and fought off panic today, cancer has so far been a walk in the park compared to me being pregnant). Then I had PTSD and fought a horriffic fear of food for several years through the holidays. I was FINALLY doing SO well and I get cancer! My tastebuds are shot, my digestive tract is in shambles AGAIN, and if I stay on schedule my last big infusion is the Thursday before Thanksgiving. I have every intention of Living. It. Up. Over Christmas! Food wise anyway...0
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KateB79, re your genetic testing question. It's incredibly complex but as you know the more genes you test for, the less likely you will miss something important. If you get BC in your 30s there must be a high chance that you've got a funny gene.
Seems to me you need a physician to make the case for a particular set of tests, based on your personal circumstances and family history.
Good article here in Journal of American Medical Association 'Treatment Decision Making and Genetic Testing for Breast Cancer' http://jama.jamanetwork.com/article.aspx?articleid...;resultClick=24
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Chemo #2 is done! I met for coffee with a new friend yesterday and 2 1/2 hours later realized what time it was and that I was almost late for my appointment. It felt so good to know that these treatments were in the back of my mind for awhile and weren't driving my life.
My MO is a wonderful person, in addition to being a brilliant doctor and researcher. Her demeanor has truly made this so much more bearable for me. I told her as much yesterday, and she got all teared up. Do patients not tell her that? We ended up having an additional 5 minute social conversation all about being working moms and bringing her first child to college last weekend and then she gave me her cell so I can text her anytime. My professional life is all about building relationships. I'm going to be more conscious about relationships on this journey, too, even when I feel lousy. It makes me feel better and hopefully even at my lowest I can make others feel better, too.
Re: side effect management: she reduced the taxotere by 20% to hopefully reduce the unrelenting diarrhea I had the first time. I know the perjeta is notorious for that too, so we will see. But I did feel that my MO and all the nurses thought my reaction was extreme and are committed to finding a solution.
The MD fellow who examined me said she couldn't even feel the 4 cm tumor anymore. I can't either. Can this actually be working?
I had a little emotional breakdown yesterday morning when I felt some back pain. My mind immediately went to the months of agony with my two undiagnosed fractured vertebrae (thanks a lot PCP) that were discovered to be metastases and eventually this diagnosis. But this morning my back feels fine.
People are truly amazing. The employer I resigned from after my diagnosis (and only three weeks working there!) are paying for a cleaning service for my admittedly disaster of a house. And my former coworkers (from the job I left for the new one) and friends/neighbors/other parents at school that I don't even know) have signed up to bring us dinner every night through November!
I am incredibly grateful to each of you that had formed this group of remarkable, strong, beautiful inside and out women. Without these diagnoses, our backgrounds and geographies would never made our paths cross. But you truly lift me up. Thank you for that.
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Hi Ladies,
I saw this on FB and instantly thought of all of you currently going thru treatment. Hope it brings a smile to your face. Praying for you all!
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Bluefrog, so glad your appointment went well! I'll bet that reducing the tax will really help, as will the fact that the loading dose of Perjeta is TWICE what we get in subsequent rounds. Take good care and know that you and I are on exactly the same schedule, so we can compare notes if you'd like.
I also second the fact that this board is incredible.
Curlyq, that's hilarious. Love it!
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Finished with AC #3. Annoying brand new side effect is blurry vision in my right eye with some weepiness. I live to read and am frustrated with the blurriness, but I'm hoping it will resolve soon. I'm finding it difficult to sleep as a result of the steroid, so I'm here.
DeeRatz and Molliefish - congrats on the newly bare heads! I'm sure you're both rocking the look.
Mom2ABoy - very cute siggy pic!
Curlyq1974 - love the gif...very true and so funny.
Joceyr - that's both head-shaking and hilarious about the mammogram reminder. I received authorization in the mail to have a bilateral mastectomy two weeks after the BMX was done. Makes you say WTH?!
KateB79 - I don't understand how vaping MM is unlike smoking it--both involve inhaling, so I feel as if both would be painful in my lungs. Can you elaborate? I'd love to find edibles somewhere but think it's unlikely, so I'll keep soldiering on without it. Re: lifetime maximums for insurance companies, my understanding is that the ACA prohibits lifetime maximums.
From http://www.cancer.org/acs/groups/content/@editorial/documents/document/acspc-026864.pdf :
"Removing dollar limits on care and benefits. Insurance companies can no longer limit the amount they will pay for a patient's care over a year or over that person's lifetime."
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BTW, I haven't had alcohol in over eight weeks. If I'm healthy enough for a date night on Saturday (two days after last chemo treatment), I'd love to have one or two martinis. Typically on the third and fourth days following treatments, I get killer headaches that feel like hangovers without having had the fun.
Question: how are you all reacting to alcohol if you're drinking it? I'd hate to increase any pain on Sunday after having a couple of drinks on Saturday night and could skip it if it's a bad idea.
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JenPam: vaping heats the herb to a level that releases the active ingredients (TCH, CBD, etc.) without combusting. So while you're inhaling, yes, you're not inhaling smoke and its accompanying tars. It's not ideal--I agree that edibles are a very good way to go, though they're difficult to get right in your own kitchen--but I notice a huge difference between holding a lighter against something and inhaling, versus heating to vaporization point. No coughing, no lung congestion, no burning throat. While vaping, one really is only inhaling the vapor, and nothing turns to ash in the chamber. Depending on where you live, you may be able to find edibles (either legally or on the black market), and they're excellent for managing SEs. Tasty, too.
CBD tinctures are completely legal across the nation; they can be purchased online and in some specialty stores. CBD, one of the many non-psychoactive components of MM, can work very well for anxiety, nausea, pain, and a variety of other SEs that so many of us experience. It's completely legit: it doesn't make you high (at all); you just put the drops under your tongue and let it absorb. I've found this to be great for, say, working, where I certainly don't want to be under the influence. I'm happy to give more info, but I don't want to ramble on for days about it unless there's interest.
Alcohol: Like you, I feel hungover a lot of the time in that first week after treatment, especially when the dex wears off and I go off of the Zofran (days 4-5 are killer). I've indulged in several NA beers--I'm fortunate to live in a place that sells a lot of options, and not just the crappy O'Doul's/Sharps typical offerings--which makes me feel more "normal" in party/cookout situations. This past weekend, after helping a friend move in 90+ degree heat, we all went out for drinks, and I had two light-ish (for me, anyway) beers with no problem whatsoever. Granted, I was nearing the end of the three-week cycle, and just listened to my body. I'll say this: those were the best beers I've had in a very, very long time, and I felt no ill effects the next day (probably because I came home and pounded 32 ounces of water).
My MO says that 1-2 drinks on occasion (she means once or twice a week) are fine, because she's a big believer in "living life" while going through treatment. Just no keg parties, and listen to your body. One or two martinis probably won't hurt, especially if you're feeling good . . . just remember to rehydrate! Have fun on Saturday!
My own update: I took .5 mg of Ativan last night, because I could tell I wasn't going to sleep otherwise. It worked like a charm. Other than having to pee four times (I drank over a gallon of water yesterday, plus the IV fluids), I was out like a light. Woke up feeling so much better than I did three weeks ago at this time! Three cheers for getting through that first hellish three-week cycle, for learning what to expect (the unknown is the worst), and for trying to be more proactive--on my side and on my doctor's--this time around. We'll see how I feel when I'm off the roids.
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Kate, thanks so much for your post!
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Good morning ladies,
Treatment #3 of 12 today! I am feeling nervous. My stomach got upset last night and still hasn't calmed down in spite of the pepto. (But no nausea, thank heavens.) Most of my nervousness is because I read the package insert for the interferon this morning. I don't know how exactly my husband felt bulletproof while using that stuff, because according to the insert it actually reduces WBC. And a host of other truly intimidating-sounding side effects, including the exact same ones as chemo, even the hair loss! (Actually "hair thinning", so who knows.) The only one it doesn't have is nausea. Small favors, right?
TGIF!
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Curlyq1974 --> love it!
BlueFrog, good on you for enjoying you lunch.
JenPam I was a wine with dinner girl, (Chard, Pino Grigio) but had abstained from a week prior to my first round until the middle of the second week, I'd say around the 28th. I tried a glass of Chardonnay and my comment was "mmmmmmmmmm salty" so I didn't finish it but I finally enjoyed a nice Guinness Last Friday night and I didn't feel bad after. Like Kate's MO said, enjoy live, the simple pleasures are that much more pleasurable these days.
OK gotta go, off for round two soon and the kiddies are still in bed.
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Good luck today, Molliefish!
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Mysogirl, I had two pregnancies with hyperemesis, too. I remember while I was going through them telling myself it would help create empathy in me if I ever chose oncology nursing (I'm a school nurse). I find that chemo is a helluva lot easier than the pregnancies as well!
My wbc's were 2.8 on Tuesday, one week after my first treatment. I've been avoiding crowds, but that's no sacrifice for an introvert like me.
I took leave from work since mine is in a germ filled clinic all day, and I have a very busy job that's not easy to take days away from. I am the diabetes nurse and have ten I manage in addition to all the usual clinic stuff. I'm the only nurse there. So, I'm enjoying being home. I have an almost 17 year old with severe autism and cerebral palsy, and I've been so happy to just devote my energy to him. Love that kid.
Rachel, your wig is gorgeous. I plan to go bald or wear the free do rags I got at my MO's office, but your locks are making me rethink that decision.
MMJ is a godsend for so many ailments, but I can't get it here in Florida. I've been advocating for its use with seizures (my son has them, but they're controlled). Hopefully one day soon we'll all have it as an option.
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Carolyn, I hear you about the introversion. "Avoid crowds" . . . okay, I shall!
In my humble opinion, marijuana--both medical and recreational--is one of the next major issues that U.S. voters will see. There are several states with ballot initiatives this year, and others with strong grassroots (again, no pun intended) campaigns pushing for legalization. I understand the arguments against recreational use, though in states where it's legal there have been major financial gains that have led to, among other things, education reform, fixing damaged roads (which we could sure use here in the Midwest), and tax refunds for people who didn't qualify before. That said, I really see no strong argument against its medical use, for those who choose to use it! The trick is to avoid smoking it; unless it's combusted, it's one of the safest substances to consume.
I'm off the soapbox now and promise to stop preaching about this. Over and out, and happy weekend, ladies!
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KateB: there are few things that can make me smile more consistently than bad puns, so feel free to keep them coming!
Carolyn: I certainly share your appreciation for more time with your son. This was my first week as an official stay at home mom. It will hopefully be temporary, but I'm enjoying the extra moments with my kiddos.
Thanks for all the wig compliments, ladies. It's quite comfortable and was very affordable. I'm enjoying being bald in the house, wore a beanie out to the pharmacy early this morning, and ordered a few hats with hair that should be delivered Tuesday. I think it will be less of a burden with several options.
Off to get my Neulasta. I hope everyone has something to look forward to this weekend. Especially a nap!
Rachel
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Been feeling more tired this few days (today is day 19 of round 2. TC #3 on Labor Day). This morning woke up feeling I have lead shoes on...
Saw the MO this morning. & she suggested the BRCA test, especially when the Genetic Counselor couldn't find anything in the family history & because of my age, there is higher chance that there's some mutation. She said we could think about it more after Chemo. I remembered the Genetic Counselor said it's covered -- actually everything related to the diagnosis is.
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Carolyn, my two biggest fears after hyperemesis were cancer and menopause--I had severe hotflashes that trigged my vomitting while pregnent. And now I get to face both 20 years earlier than I ever would have imagined. I haven't seen my GYN since he found the lump and ordered the diagnostic mammogram--but I had told him he was not allowed to die or retire till I went through menopause--he is really getting up there. Well, looks like he will be off the hook once I learn how to deal with Tamoxifan in the next year or two!0
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Hello ladies,
I am joining this thread. I am triple positive with 6 cycle TCH. I have completed 2 cycle and will have my 3rd one next thursday.
So far, I am doing okay, there are some days that i feel down, i think it may be one of the SE.
I find your postings encouraging and hope to be part of this nice supportive group.
Have a good labor day weekend
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Hi Alice,
I've found this group to be tremendously supportive. It is rewarding to have women to lean on who "get it". Have a great weekend.
Rachel
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Rachel: thank you for the warm welcome.
I've been searching for online support group and found this thread to be very helpful. You ladies have gone through similar experience and can relate to each other. I am grateful that my family and friends have been supportive, but they don't go through this chemo SE, so they don't quite experience how bad it could get some times.
Before my diagnosis at end of May, I was very energetic and upbeat. Like everyone else here, I did not expect to get BC at the age of 39 since none of my family members have BC or any other cancer. When I heard the news, I opted for mastectomy (tumor size 1.1cm, no node involved) with breast reconstruction. I wasn't worried about the surgery and wanted to do it right away. I am thankful that the surgery went well.
The idea of chemo terrified me though. Although I have gone through 2 cycles, each time the new cycle coming up, I am anxious and keep wishing that I would have gone through less cycle. I know many of you ladies gone through more than 6 cycles. I feel that reading through your experiences and positive thinking posting keep my spirit up. I kept telling myself that each cycle that I complete will bring me closer to my "graduation" day.
thank you for listening to my story
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welcome Alice, I've found this group to awesome, and their experiences and solutions very helpful as I make my way through Chemo.
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ok, I am going to ask what is probably a very naive question, especially coming from someone like me who smoked a *lot* of pot in college (hey, that was 40 years ago...): is the problem with smoking it just the concern with lung damage/possible lung cancer as in smoking cigarettes, or is there some other issue I am unaware of as well? Edited to add: I shouldn't say 'just the concern' as obviously that is a big concern. However, I didn't think there was conclusive evidence on that???
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