August 2015 Chemo Group
Comments
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Sloan- I have had ringing in my ears since infusion 2, or maybe that's when I noticed it. It isn't terrible but it is always there. I have had trouble with headaches from treatments. I have been lucky as far as other SE. I talked to my MO and he said that they are probably from the anti naseau drug that I am on. Seeing as I have no naseau the is reluctant to change my meds. I think my headaches may also be due to laying around too much and my neck getting sore. If I go for a massage it seems to help. I think just due to all the tension we are all carrying.
As for neuropathy I have a bit in my right foot. I didn't ice for my first 2 treatments but am hoping the icing I did yesterday will help with further damage. Iced for the whole hour of the infusion as well as the sucking on ice chips during the Taxotere. I hope things get better for you Sloan. Scary stuff....dam poison0 -
Hi Dee. Sorry to hear you still have ringing in your ears. Your blood pressure is good, right? It just might be this stress. The tingling is lesss today for my neuropathy but still there. Let me know if icing helps you, and I might try it. I hope your SE this week are mild!
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Re ringing in the ears. I have had constant tinnitus on the left side since before my brain tumour surgery. When I had the tumour removed I lost all hearing on the left but not the tinnitus. When I finished my first round of Chemo I was ok until I took a couple of doses of stemitil for break through nausea. Then I found that not only was I dizzy, fuzzy and sick, I my ears were ringing like mad. It took a couple days for the intense ringing to go away, but I have, I'm certain suffered some hearing loss/disturbance on my right side from either the chemo or the ancillary meds for other stuff. It is worse the first week after chemo and I end up apologizing to my family for getting frustrated with them. I find that even facing them when they are speaking to me, I can't hear them. They must make a concerted effort to look me in the face and enunciate every word. I find that I'm better in the last two weeks but I still have issues. I'm will force myself in for a hearing test after the chemo is over, and I hope all is well. If not it has the potential to be career limiting/altering.
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Hello all. I have been following your thread but wanted to stop in and say Hi. I am part of the August 2014 chemo group, and that group of ladies which I now call my friends was a life saver for me during the process. The support Was beyond what I ever expected and can see it is the same here. I had my one-year dx anniversary June 9, 2015. Best of luck to each one of you? I am wishing minimal to no SEs. Keep supporting and encouraging each other. If I can ever be of assistance please PM me. Xoxo
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Ladyb - Thanks so much for the encouragement. This truly is a wonderful group of ladies. We are so lucky to have BCO and each other. Congrats on one year!
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Sloan - are you taking glutamine by chance? It was recommended to me for neuropothy. I hope it goes away for you, you're almost DONE.
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My first THP treatment was long—7 and 1/2 hours! My husband stayed with me to help with icing. Our makeshift arrangement with frozen gel ice blocks and bags of ice and large cookie sheets was amusing but mainly successful. Here's a photo of me during the icing process:
Main side effects so far have been sweating (I soaked through five pairs of jammies last night and the area above my upper lip keeps beading) and sleeplessness.
molliefish, so glad to hear things are moving along in the digestive sense—what a (literal) relief!
Tazbear, sorry to hear you've been suffering so much from side effects. I hope it gets better for you from here on out.Re: being tired of pink, this is what I posted on my Facebook page on October 1:
"It's October, which means presumably well-intended talk about boobies and tatas and being aware. Here are some awareness-raising realities. Breast cancer is not cute or pretty. Women who have lost their breasts do not need or want to see a focus on hypersexualized advertising that showcases breasts. It's important to know that only 5-10% of cancers are genetic. Treatments often result in lifelong disabilities, including heart damage, peripheral neuropathy and lymphedema. Cancer is a deadly disease, and it kills when it spreads. Cancer that stays in the breast won't kill you; what kills you is the metastasis to bones, lungs, liver, and brain. There is no cure. The threat of recurrence is ever-present. Not everyone is a survivor, even though it seems like it if you watch the celebratory antics of people who want to use this month to promote their own agendas. 40,000 U.S. women continue to die every year from metastatic disease (stage IV), but nobody wants to talk about metastasis because it doesn't fit into the rah-rah culture surrounding popular campaigns. 30% of all breast cancer patients will develop metastases, but only 2% of research funding goes toward metastatic breast cancer. Companies use breast cancer as a marketing campaign, often making millions and billions off the backs of patients while limiting their contributions to a specific, nearly always unpublicized, cap. We no longer need to throw the bulk of funds at awareness; instead, we need money put toward research. Check out charities before you donate to learn how much money is actually spent on research. You might be unpleasantly surprised by what you learn. Here's to a healthy October for all of us!"
Mom2ABoy, sounds like our boys are two peas in a pod! My son is getting his degrees from the University of Maryland & studied for one semester in Australia. He loves traveling and is open to living anywhere after college graduation in May. It's sad for me, but I know I have to let him go. Right now he's interviewing with Google, Amazon, Microsoft, Bloomberg, and about 10 other companies, so who knows where he'll end up. Amazon is flying him out to Seattle next week and I'm hoping he won't fall in love with the area (we live 20 minutes outside D.C.). His twin sister is committed to staying in Maryland, so I've breathed a sigh of relief in that regard. How old is your son?
Duzy, thanks for explaining about the lymph nodes. I'm glad to hear they'll be checking out more of them! Icing was tough for me…very cold (ummmm…I should have figured on that, right?), and I found I couldn't also ice my mouth because it was too uncomfortable. I've iced my mouth for all of my AC treatments, so I hope not icing during the THP regimen won't result in mouth sores. Maybe next time I can manage to ice my mouth as well.
Sloan, hope you're feeling better today.(((hugs)))
Michelle, wow…yeah, chemo isn't one of those things you want to delay. Let's get this crap over with and moving right on schedule so life can get back to normal! Re: Neupogen, I wouldn't have continued to need it if I'd gone with Taxol. However, my MO changed me to Taxotere (with Herceptin and Perjeta), so because of the increased rate of infection with Taxotere v. Taxol I'm still on Neupogen for a week following every infusion.
Tam-iam, sorry to hear you had to spend time in the hospital. Glad you're back on the mend & I hope your next AC treatment is less debilitating.
ladyb1234, thanks for your words of encouragement!
And last, here's me in a new wig…I don't love it, but I think it's okay for the occasional night out (P.S. those are my new silicone falsies in a bra with pockets--my shirt used to look better when I had cleavage!):
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@JenPam, my son is 12, but he's already got two things in mind: going to college (Oxford or MIT, naturally!) and getting married and having kids. (Hopefully in that order, not the other way around, LOL.) Also, by the way - I'm pretty close to Seattle, and lived there for almost 20 years, so message me if you want to, if you have any questions about the city/environment/universities.
Your wig looks great, actually! I like that tied-back look. I've just been wearing a hat that a friend of ours knitted for me. I'll post a photo of it tomorrow. It's purple, like about 30% of my wardrobe.
I tried the Shea butter conditioner today. It seemed to help my scalp a lot. My nurse thought the cause of my scalp irritation was probably sun overexposure. She recommended a dry spray sunblock, so I'm going to pick some of that up over the weekend. I also tried a trick I think one of you recommended the other day - I kind of rubbed my hair around and threw away the hair that popped out before I started my shower. That way I'm washing just the ones that want to hang around and not leaving so much to go down the drain when I'm done showering.
IToday was treatment #7 of 12. I confirmed with my MO that he thinks it will be wise to continue with an every 3 week regimen of Herceptin after week 12. So I won't be "done" after the 12th treatment but at least I'll be done with the chemo part.
I also told one of my best Seattle friends today. That was hard, but she is such a good friend, she came right over to the clinic and stayed with me all afternoon, then had dinner with me (and paid for dinner too, bless her heart).
After I got home, I did some work, and then took a Benadryl to sleep and hopefully help prevent any allergic reactions/issues in the morning. I ran out of melatonin! It does such a great job of making me sleepy and keeping me asleep all night because it's 20mg (2x10mg timed release), but when you're out you do the best you can. I did have some 1mg liquid melatonin on hand, so I took a triple dose of that. I will buy more of the good melatonin tomorrow. By the way, I am not sure if I mentioned this before but the 2x10mg melatonin was recommended by my naturopath as a direct help with causing the apoptosis of cancer cells. So it seems like a very good, two in one hormone!
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I just caught up on our thread. . . Lemme just say this: every single one of you inspires me. Every one of you. The pictures look fantastic, and your words are wise. Three months ago, we were a bunch of strangers, leading our lives, and now here we are. . . . And what a community we've formed! That's huge--what a silver lining amidst the sh** storm that we're enduring.
I don't have a lot to report, other than the fact that I braved eating out with my partner and BFFs last night, even though I'm at the tail-end of nadir, and tonight am going to see a friend's band play, but I wanted to check in.
I hope everyone has a great, side-effect free weekend! Big love and much gratitude to all.
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Sloan & Mollie- BP is good, ears are still ringing but not terrible. It is mainly my left ear. My other SE are almost non existent. Stomach is a bit off but not an issue. I haven't noticed any neuropathy issues so hopeful long the icing helps. Sloan I would recommend trying it next treatment. It can't make things worse. It's an easy option to try. I took an cooler with gel packs that were frozen. I swapped them out once during my treatment. I'm glad to hear that your symptoms are decreasing.
I'm trying to get the strength up to drag my butt to the gym. They are having a Curls for Cancer fundraiser. I would like to go for a bit, even if it is just to ride the bike for a bit. My gym family has been so supportive I should at least make an appearance.
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I'm having this internal conversation with myself. I still have my eyelashes and brows. No sign of departure yet. From what we know on these boards anecdotally, they should jump ship a couple weeks after the last infusion of Taxotere. Since we ice our fingers and toes against neuropathy, and some our heads (where we can) to save our hair, I'm wondering if I used something cool on my eyes/brows during my next treatment it may prevent the loss of the brows and lashes? Even reduce the amount that go. I've already had three rounds so I'm not certain what the mechanism is for the brows and lashes holding on for so long and then finally going? I wouldn't use ice but there are cosmetic cooling masks out there. Might be worth a shot. I sleep through the tax usually with my sunglasses on so something a little cooler might not be too uncomfortable, maybe even a cool washcloth? Thoughts? Anyone know why the Caramilk secret regarding the lashes and brows ?
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Been lurking around for last couple of weeks. Feeling progressively better. I started therapy with a new psychologist for the PTSD and she's been wonderful so far. I'm very scared about the new chemo on Monday (Taxotere and Cytoxan), but I'm trying to keep busy and doing a lot of meditation to ward off the anxiety. It seems to be working so far. And when I do get weepy, I just let the waterworks go. Fingers crossed this will be better than the Adriamycin-Cytoxan rounds!
JenPam, may I post what your post to my FaceBook page? It's a great message that needs to be circulated.
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I spend my TGIF in the ER.... for a few hours... Spiked a fever in the afternoon. & went over to the ER (in afternoon commute traffic, no less). It was 103 when they check me in...
The Dr did bunch of blood tests, include culture. blood counts are good; can't find any infection... They think it might be reactions to Neupogen, which i didn't have last 2 rounds. But anyway... they let me go home after a few hours..
Also did a chest x-ray, did i know part of my R lung had collapsed before? ... ?? Dr the think it might related to the surg. (they would have told us, right?) Can they see when that happened? in hide-sight, i wonder if my lungs never fully developed, since i was a premie (was in an incubator or 2months) I read that lungs don't full develop until much later?
well... 2 more days of Neupogen & just taking it easy today...
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Regarding the pink...
I posted in another thread that I'm on the fence with pink, but I'm leaning toward support when I think rationally about it. Part of me doesn't want to see pink so I'm not constantly reminded of my cancer, and the other part needs hope. But seriously, not seeing pink won't make this easier. I think it's part of my stages of grief. While I agree with JenPam that the pink cause is exploited to make a buck, I think the everyday person is basically good-hearted. If buying a bracelet or wearing pink socks makes them feel part of the fight, that's all they can do. It seems so superficial, and it is, but WE are a very exclusive club who doesn't want new members and are the first ones to scream, "You don't know what it's like!!!" Yeah, they don't and we don't want them to. But, if they help bring awareness to get mammograms or to get checked if you notice a problem, I'm all for it. If it makes my bald head less freakish and replaces it with compassion for patients, count me in. If it wakes us up to only 2% of the money being spent on metastatic disease, then let's put that on TV, too. Why? Because it used to be nothing and the patients suffered in darkness not wanting anyone to know their "shame" of a bald head or breastless body. We have leapt out of darkness because someone turned on the pink light for us. Some days I do hate pink. But today, I'm grateful for pink shirts and pink shoelaces because they beat the hell out of apathy.
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Sloan15, I agree. Yes, there are people drawing big salaries and profiting from the pink campaign. But I can find unscrupulous people like that in any corporation, government included. Yesterday I had a mammogram and after the woman doing it handed me a little pink bag with some trinkets in it, it was their way of acknowledging what I am going through. When she handed it to me, I could tell she was nervous, waiting to see how I would react. People supporting us should not have to be afraid of negative responses. She was compassionate during the mammogram, expressed a lot of concern, and to me she is one of the faces of pink. Every individual supporting us is important, and I respect people who want to acknowledge what a terrible disease breast cancer is. People do what they can. And really, what would I say to her? And tell her to do otherwise
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Ooh Superius, so sorry to hear of your fever spike and the abnormal tests. I hope they all turn out to be a side effect of the chemo and you'll recover soon!
I don't like PINK. But I do like the female solidarity. Friend had rare sarcoma and had no club to join.
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There is a very interesting documentary on Netflix (Canada not sure about the U.s.) called Pink Ribbons. It's about Breast cancer awareness, the corporate takeover, the "pink ribbon" (where it came from - originally more of a salmon color and the sweet lady that started it was trying to bring awareness to prevention of Breast cancer. Estée Lauder approached her to sort of adopt the idea and the lady was not interested so Estée Lauder and the team changed the ribbon to a pink so they didn't meed the lady's approval!) The whole documentary was super eye opening. Especially how breast cancer awareness month was founded in part by AstraZeneca the makers of Tamoxifen and other BC drugs...and doesn't focus much on prevention.
I know that one always needs to take a documentary with a grain of salt. But I sort of don't know how to feel. Awareness is good, yes. Capitalizing on the ribbon is not, especially when mere %s are actually going toward the cause. I personally do not buy/wear/promote any of it.
My sisters friend just asked if she could do the "run for a cure" for me. I guess you can run for someone? I almost said no (especially after seeing the documentary) but I guess she is just being thoughtful and cares about m
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I'm not sure where I put this before but re: the pink. I was Them before I became Me with BC. What would I have done when I was Them? I would have bought the t shirt, done the run, bought the ribbon, cookie, cake, hat, raffle ticket... I just gave $50 to Terry Fox run. Is it any different?
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My friend did a charity swan today for her local Womens Cancer Resource Center (SF bay area), which provide support to lower-income women with cancer; medical advocacy, support groups, etc The names on her back are the "honorees" she swan for. My name is one of them.
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Well I participated in a curls for cancer fundraiser at my gym today. Next year I have asked for a barbells for Boobies fundraiser. I know the whole pink campaign is overblown. But when my cousins daughter participated in the Terry Fox run with a sticker on the front of her shirt saying she was walking for Deanna. It brought tears to my eyes. When I received a photo tonight from my friend in Reno Nevada and her sons football team was playing for Breast cancer and he was playing for me, I will take all the support I can get. If it brings awareness to this horrible disease and they can come closer to finding a cure,and my daughters, friends or family never have to go thru this experience.....bring on the PINK. Early detection & listening to your body is key.
I am also hoping to hang on to my brows and lashes. That will be a sad day for me if they leave me too. My hair I can handle...barely
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Thanks for sharing your stories and pictures. Pink or no pink, loving hearts can't be wrong.
Dee, that one part about your cousin's daughter saying she was walking for you almost brought tears to my eyes.
On a similar note, my husband asked today how he could honor me in this fight. Sniff. Honor me. He's been the solid one.
What did someone -parent, friend, SO, stranger- say to you that humbled you and totally made you feel loved?
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Fell off the wagon... bottoms up.... just one (of each) though.
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I don't like pink. Never have. But today our YMCA did pink--all the kids were asked to wear something pink for their games, and there was something so sweet about my little soccer player sporting a pink bandana on his arm. All the coaches and refs had pink shirts and they even used a pink ball. Can't beat 7-year-olds rallying for a cause! Too bad our team lost.
I am still not feeling well. The head cold just won't give up. Have been SO dizzy this cycle and had a headache all day. Next infusion is Thursday and I am dreading it. This last one was so bad. The nurse seems to think he is switching to weekly Taxol from the Taxotere--something had to change, but it is daunting to face new side effects from what I knew to expect. And not being at the top of my game...0 -
Sloan15 The first thing my friend said to me after my chemo graduation was, "So, the torture is over." He had said it lightly, just in passing. But I know that he had been worry how I was holding up with the chemo, and I think he's been holding his breathe the whole time; it's probably torture for him as well, emotionally. I think someone had mentioned a week or so ago, that they would rather go through this themselves than seeing their loved one going through it. Those few little words have been weighted on my mind & heart these few days. I think it's the reason why I haven't told him about my fever/ ER run from yesterday (more worry) --- yeah I know I should tell him...
Besides lots of prayers, Rosary said, candles lit, I also have many friends from church offering Mass intention for healing. Few of them put my name in for the whole year in couple religious communities. I think IF prayers are like protecting shields, I am well protected beyond the 5yr mark...
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@Sloan15 - my husband wanted to honor me as well. He decided to get a tattoo on his right chest in the shape of a pink ribbon and heart with my name in it. He is NOT a tattoo person at all. Would never have gotten one otherwise but he really wanted to be "marked" like I am (scarred) for life. It was a sweet gesture.
We have an annual local breast cancer walk. My friends are ordering shirts with my name on them and we are all walking together. I have wonderful people in my life that are so supportive. I am very lucky. My BIL sent me flowers yesterday with a lovely note about chemo ending and running the marathon. Very sweet. Like I said, I am lucky.
And the pink doesn't bother me. I kind of like it. I haven't read through all the posts but I see there is some difference of opinion. I haven't been thinking about it too much. I think if it raises awareness and gets women to schedule their mammos, it's all good.
Two days away from my LAST chemo. I am giddy with excitement. Can't wait to be done.
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Just weighing in re: Pinktober.
I have complicated thoughts and feelings about it. On the one hand, Komen (et al.) has done wonders for raising awareness--and therefore money, some of which is filtered into research that could very well lead to a cure (or a vaccine) for breast cancer. On the other hand, the whole "save the ta-tas" thing is waaaaaaay overblown and, as a woman who only has one breast, it makes me feel a little marginalized. Shouldn't the focus be on SAVING WOMEN'S LIVES? Yes, it should. But, hell, if we can use women's bodies being objectified to save lives, I guess that's still a win.
Another good thing: because of all of this awareness, insurance companies now have to pay for reconstruction. That said, the emphasis there is still on breasts, and not on women. What if I/someone else who has only had a UMX want(s) a prophylactic mastectomy on the other side without recon? Is that covered? That's where it becomes more complicated, at least as far as my insurance company is concerned. And that bugs me. The message it sends is that if I want a perfect, reconstructed rack, I'm covered; if I opt to go flat or wear prosthetics, I have to pay more out-of-pocket. This seems skewed, yet again, towards the breasts themselves.
I think the other thing is that people seem to assume that breast cancer is "easy" cancer; that is, since the overall survival rates have increased so dramatically. What we don't talk about--and please forgive me for bringing this up right here, right now--is how much money needs to be raised for metastatic breast cancer. That's the next hurdle, and I'm trying to figure out which organizations support that kind of research.
The pink doesn't bother me. It really does signify a kind of sisterhood, albeit one that none of us would have joined if given a choice. What does bother me is the notion that slapping a magnet on a car is the same thing as providing mammograms for women who can't afford them, or the idea that my breasts make up a huge portion of my identity as a woman and as a human being.
Anyway, sorry for rambling.
molliefish: cheers!
suzanne50: you do it, girl! YES!
musosgirl: I'm so sorry you're still feeling horrible. . . . Maybe the weekly Tax will make a difference?
deeratz: love the picture.
everyone: love all the pictures and stories! I hope we all have a good week!
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Great stories. Chemo has been torture for the people who love us, too.
Suzanne50 - Great news on last chemo date!
Let's hear more: What did someone -parent, friend, SO, stranger- say to you that humbled you and totally made you feel loved?
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kate - That was not rambling, that is how many of us feel. I think the message that hit home for me was " What does bother me is the notion that slapping a magnet on a car is the same thing as providing mammograms for women who can't afford them.." Like I mentioned, I'm good with the pink-thing if it provides awareness and support; a common rally-cry is okay when it brings people together. I think the next step is US helping to make the message genuine and important. We are the new face of cancer, and anyone who goes through life knowing anyone of us on who has been through this will be forever touched by our struggles.
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All of you women are all so strong and inspiring. I am thankful that I live in Canada(from May - August when it's nice out). Winter sucks the big one....hate it.....I am very thankful for the benefits of our medical system and not having to deal with insurance companies. I had my BMX on June 16. I worked half days from May up until my surgery. I have not been back to work and will not be going until I am done ALL my treatments. I had a prophylactic Mx on my right side. I had no issues fighting for reconstruction or worrying about who is going to pay for it. For this I am very thankful. You women who are managing to work thru your treatments I dont know how you are able to manage. You are the true warriors.
My friend and husband own the physiotherapy clinic in town. They had a run a few weeks ago and we raised $5000 for BC research. They had my name printed on all the race shirts with the pink ribbon. It was an extremely hard day when I showed up at the race...I didn't feel like I should be the one they were racing for....was I really the face of BC? It was a very emotional day for me. They are wanting me to present the cheque at a radio marathon in our city that has raised millions of dollars for BC and tell my story. Not sure that I can be strong enough to do that. I'll be a tear bucket.
After I am done my all my treatments, I am going to get a small pink ribbon tattoo on my foot as well as a single dove for each treatment that I have had to endure...1 for each surgery, biopsy, chemo...I may have many but I need to symbolize my own journey. This has whole process has changed me I ways I never thought imaginable.
Thank-you for all the posts on here daily. It makes me not feel alone in my struggles. We are one hell of a team!0 -
>One more story....sorry sitting here drinking coffee wrapped up in my hat, fuzzy housecoat and blanket...waiting for the poop ferry to come and bless me..
Yesterday we drove 4 hours total. My grandparents are celebrating their 65th wedding anniversary today. All my aunts and uncles were up for the celebration. It doesn't happen very often so I crashed the potluck at my aunts place last night. I wanted to see my family. First conversation was with my grandpa and uncle.....convo was centered around some old guy who had cancer and now was relapsing....I left that convo.....then the women's convo was centered around canracer and people dying. I finally spoke up and said "We are now going to talk about life and living and happy times". A cancer or doesn't want to sit and listen to that crap. I also like the comment....."your coloring is so good".... Uhm yeah well it is called makeup and bronzer, they expect you to look grey.. I typically have looked like the unsick/sick person....that was until I lost my hair. Now I should just be bald and grey looking.
I won't bore you with more of my rambling.. Have a great day beautiful warriors.0
