Starting Chemo April 2016
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Name - Denean
Age - 44
What chemo cycle are you on: 3rd of 4 Taxotere next Thursday (I'm half way!)
Do you have children: son 6 1/2
Location: Ohio (Go Cavs!)
Hardest thing for you so far: depression, my son was only 2 first time around, he's aware something not great is going on this time. I have honestly had good energy throughout surgery, radiation and now chemo tho chemo is the hardest and cruelest reminder that you intentionally poison yourself to hopefully poison the cancer more so it's gone or goes into remission. I estimate I've got a 50/50 shot at best being here to see him graduate high school. Focused on his current grades, sports and building friendships for him through church and activities so he's not derailed if and when I die. Pulled / pulling almost half my retirement out to do home improvements and take vacations. Having fun and liking my granite counters, but doing AC and furnace next....sometimes depressed that everything I do is to make this place nice / easier/ lower costs so husband can manage as a single parent - just in case
Hats or Wig: cold capping, but now wearing hats to cover bald spot on top. Still capping damnit. Hoping it helps hair come back sooner and at all since this is Taxotere we are messing with here.
Current hair status: Tom Petty meets crack ho. Baseball cap with earrings and makeup almost can't tell for now but first shed is never ending nor lightening up and it's day 30. Fucking chemo. I have two wigs but they are too thick and I know they itch when it's warm / hot out. I have to go get a fake clip on pony tale for my baseball caps soon!!!
Favorite quote/advice/song: Where a rose is tended, a thistle cannot grow.
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7of9 I hope I am not overstepping but have you heard of the book, "Anti-Cancer, A New Way of Life"? I think there is so much information about things we can do to help establish the "terrain" that cancer doesn't like to live in. It's just a thought and I don't want to offend but it is really a great book. xo
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I'll play, too.
Name - Cherri
Age - 56
What chemo cycle are you on: 2nd of 4 cytoxan/taxotere cycles done. Next chemo day is May 17. With a papillary tumor, I honestly wasn't planning on chemo. I thought I would be surgery, radiation and 5 years of tamoxifen. My plans changed when my oncotype came back as functionally triple negative (my ER was 35%) with a score of 48.
Do you have children: daughters 29 and 31, granddaughters 10, 11 and 12.
Location: Columbia, MO
Hardest thing for you so far: Shallow as it sounds, the hair loss. I hate seeing myself in the mirror. I am a biologist by training who has worked in environmental health/ epidemiology for 25 years. I can put my head in a different place and observe a lot of what I am going through, and it is fascinating. Can't do that with the hair loss, though.
Hats or Wig: Scarves, scarves and more scarves. Maybe a hat or two thrown in the mix.
Current hair status: Ugh. I have some wispy grey hair left. All of my good blonde hair is gone. Why do the grey ones stay???
Favorite quote/advice/song: "How do you know the screw is tightened enough? Tighten it until it break, then back off half a turn
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Loving the quotes!
Philosophy from the trenches, right?
Day 3 from Round 2 of TC+H, feeling pretty good - just the psychology of the hair loss. Most of the symptoms that were intense last round are not really bad. Just some more sleepiness. I think last time the reaction to the steroids was hyping me up so I couldn't rest. We really had a beautiful day today. I bought a cute cap and a UV head wrap thinking that looks cute to cover up my bald spot.
Numb - I'm so glad that hear that you are feeling a bit better.
SusanBP - great to connect
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Hello ladies-Appreciate the info "game" but I'm too tired to try right now..Did Round 2 of 12 of weekly Taxol and Herceptin (post double BMX). Round 1 (one week) was more unpleasant than I expected, as I ended up with bad GI side effects, primarily nausea and horrific indigestion (with a bit of diarrhea -with constipation is you can believe that.) But by last Thursday night, things were stabilized and I felt good..just in time for Friday's Round 2.
However, Round 2 and so far have gone better, in terms of flushing and nausea and indigestion. We eliminate steroids from my infusion and we've kept the nausea meds precisely scheduled and taken on infusion day plus for next 48 hours and that has worked--no nausea and eaten whatever I like. (Fancy gourmet tacos, homemade gf lemon cake a friend brought by, etc. )
What worked to control is indigestion and heartburn (someone asked here) is, as directed by my doctor, taking double a normal does of a "once a day" dose of 24 hr Prilosec with a "once a day" dose of Pepcidl I take them both in morning and then 12 hrs later at night. Told I could take Tums for breakthrough, but so far this combo has worked.
The flushing I got last week appears to have been from the steroids. I didn't get it this week. I felt almost normal (though very tired and took a 3 hour nap) on Saturday and did several errands with my sister (hubby is out of town since Tues.) I walked about 2.5 miles on Saturday and about the same today, and am trying to keep up my basic fitness, both because it is good for me but also because outdoor physical exercise is one of my favorite things to do.
I do have a small rash near my port site, but I think it is from the cleaning solution: I have about the world's most sensitive skin; I had a bad rash that lasted almost two weeks near all my mastectomy area (well, the whole chest) due to the same thing, and also from the original port surgery, so I haven't called anyone about it. If it changes, I will...no rash on stomach or back or anywhere else. The rash lessons with cortisone prescription cream, so I'm not worried.
I used cold packs on my fingers and toes this week, because I had mild tingling and pain neuropathy last week. This week it is better, so I think they helped. That should give you cold cappers some encouragement!
I'm not doing the cold capping because I just didn't think I could manage it and my MO wasn't enthusiastic, but I am not looking forward to hair loss. However, being the complete OCD planner I am, I already have about 20 scarfs and/or hats on hand, and the halo wig and a pony tail wig on order, and a full wig on reserve at a salon--will finalize it and go in to have it sized when I am bald. So far, itchy head and sensations so I know it's on its way. Here's to the new week--make it as good a week as you can ladies! Yesterday and today's wonderful things: sat in the garden on a mild afternoon with the friend who brought by the delicious lemon cake and had a lovely chat; had nice conversations with both my adult children--I am so proud of each of them and how they are living their lives; met some new people walking the dog; spent some quality time with my sister this weekend and we both enjoyed it, and had amazing cuddle sessions with both my dogs while watching "Outlander".
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Lets play !
Name - Ece
Age - 33 - maybe the youngest here
What chemo cycle are you on: Finished 2 of 4 AC. Next on 20th. Then 12 weeks of T
Do you have children: Not yet.
Location: Istanbul, Turkey - so far from you guys
Hardest thing for you so far: Not knowing what you are going to get through at first. I was scared of chemo, scared of lumpectomy, scared of everything. But I didn't show these to anybody and kept going with a smile. And its working for me. Everyone is telling me how positive I am and although there are some bad days (some nausea, heartburn) this is manageable!
Hats or Wig: Wig - Since I'm working full time it is more convenient.
Current hair status: little stumble left but it is so itchy- still have eyebrows and lashes hope to keep them.
Favorite quote/advice/song: "Your Little Body's Slowly Breaking Down" from EVITA. It has the best lyrics in these times.
"I'm not that ill, bad moments come but they go
Some days are fine, some a little bit harder
But that doesn't mean we should give up our dream
Have you ever seen me defeated?
Don't you forget what I've been through and yet
I'm still standing.."Photos :
Me with hubby in 1. chemo (with my own hair) and me at 2. (with wig)
Happy Mondays everybody!
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I love seeing everyone's photos!! Such a lovely group we have!
I also love reading everyone quotes! Dealing with a little bit of a sore tongue. Not sure if it's a side effect or if I bit it. It's on the side, a bit back, and hurts when I try to eat. Biotene helps, so I'm using that. The good thing is that this is the time I'm usually crazy hungry and eating everything in site. I'm actually able to keep my appetite in check and focus on more healthy foods now. So, I'm happy about that at least.
Hope everyone had a lovely weekend. My whatever he is and my stepdaughter took me to brunch. It was really lovely. We sat outside and it was a bit overcast, but the temperatures were perfect. I met my SD's boyfriend who is really nice and friendly. My biological daughter will be here next weekend and was here the weekend before, so we'll celebrate when she's here.
I'm gearing up for my FINAL AC chemo on Thursday!! *Does happy dance around the room* I cannot tell you how excited I am to have this one behind me, and I'll be half way through.
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I'll play!
Name- Tracie
Age- 51
What chemo cycle- 2 out of 6 TCH
Children- 4 girls, 19,18, 15,15
Location- georgia, south of Atlanta
Hardest thing so far- the fatigue.
Hats or wig- wig at work, scarves everywhere else
Current hair status- quickly losing it!
I don't really have a favorite quote. If I come up with one I'll post it. My mantra for now is "change the terrain"
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just wondering on average when everyone started losing their hair?
My mom is day 12 and her second AC is this Wednesday. Outside of her cutting her hair to shoulder length there really is no difference. Her hair is still very thick.
I guess this is my paranoia setting in and hoping the chemo is working :
I hope all the mothers had a great Mother's Day
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Warrior - I first noticed an increase in shedding the day of my second chemo, so day 14. But that's give/take.
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Warrior: I recently read an article (on this site) that explained that everyone reacts differently to the chemo drugs and to know that they are working.
I am cold capping but haven't had any shedding yet. Many women start to shed earlier in the process.
Hang in there!
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Zoziana-are they using chlorhexidine to clean your port site (and other areas)? Apparently lots of people (me included) are sensitive to chlorhexidine. I would detfiitely mention it to your MO, but more importantly, to your chemo nurse. They have other options that are equally as effective. After all, why deal with any more than we already are dealing with?
Happy Monday to all!
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I'm in:
Name - Michele
Age - 46
What chemo cycle are you on: 6 cycles of TCHP (2 down, 4 to go!), then continuing with Herceptin only for a year.
Do you have children: 1 son (Quinn) turning 9 this coming weekend
Location: Delaware (about 30 mins south of Philadelphia, PA)
Hardest thing for you so far: sorry to be blunt, but diarrhea! The "P" in my treatment (perjeta) is known for it.
Hats or Wig: mostly cute little caps around the house, and a halo with a ball cap while I'm out. Have a wig, but it's soooo uncomfortable and feels like it looks totally obvious.
Current hair status: GI Jane
Favorite quote/advice/song: "She stood in the storm, and when the wind did not blow her way, she adjusted her sails" Elizabeth Edwards
Pic - Quinn and me.
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Hey Ladies -
I've been enjoying reading all your messages and the roll call. I did my first chemo (A/C, dose dense) on 4/29. Days 3-5 were really unpleasant. I never got sick, but I felt a fogginess and fatigue unlike anything I've ever experienced. It made my usual way of frittering time away (checking my emails, following these threads, reading articles, texting, etc.) all seem essentially impossible - because looking at anything too close made me seasick and tired. The clouds lifted last Wednesday though, and since then, I've felt better each day. I'm going out with some pals later!
I'm in for the roll call!
I'm Liz, age 33.
What chemo cycle: I am doing dose dense A/C (x4 - 2nd scheduled for Friday the 13th), then T (x4). (I'm the functional equivalent of a triple negative).
Kids? I don't have kids, but my husband and I did "put some cousins on ice" as my sister-in-law put it, before starting the whole chemo thing.
Location: New Jersey
Hardest thing so far: The fog. I am an attorney and a really active person who keeps up with friends and family. I'm used to being able to (and enjoying) juggling a lot of tasks at once and having my brain going all the time. The fog was really shocking to me. But interestingly, I was too tired to think too hard about finding it scary or sad. All I had the energy to think was, "OH, WELL." Haha! Anyway, once it lifted, I was filled with happiness and gratefulness for the richness of my usual state of being and am trying to wrap my arms around each day that I feel good.
Hats/Wigs/Hair status: I still have all my hair, but because I'm starting round 2 on Friday, I am bracing myself for the next step. I had real long hair - down to my mid-back. I cut it into a cool punky cut a couple weeks ago to get myself ready for change. I'm really glad I did. It has helped a lot in the mental preparation. Everyone says it looks good, which is cool and makes me happy I can pull off the short hair look... since I won't have a choice! I'm resistant to the idea of a wig for some reason, but I'll consider it when I'm ready. For now, once it happens I plan to go with cotton caps and scarves.
Favorite Quote: "You can do anything, you lucky bastard, you're alive. What's a little pain compared to that?" -- Nathaniel to David in Six Feet Under
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UGHHhhhh...
Day 4 again this Round 2 too...I hope I sleep through it and it passes tomorrow.
A
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Hi Ladies -
Loved reading about all of you and getting to know you. Love how some of you refer to your current hair state ... I call mine the emu head .. I feel like I just have a few little tuffs and they turned grey overnight. That is probably tough for me to see because I did have fabulous hair prior to this but I remind myself it is hair and replaceable. Many people comment on my eye brows and the fact I still have them they have not started to fall out yet and secretly I cant wait because I plan to draw in funny brows at times to freak out some of my friends. My eye lashes have started to thin and well lets just say down under has also experienced a loss.
I weighed myself tonight and I am up 4 lbs .. I lost 6 during my first cycle. My appetite is unreal this time and with the extra time needed for my iron fusions I have not been able to go to the gym and workout.
The stomach bug has gone thru my house it started last Thursday with my little one, Saturday my middle one and Sunday my oldest so I have been trying to stay away from them. I have chemo Wednesday this week. Then my kids are out of school starting this Friday at noon. The past 4-5 days I have felt great and cleaned my house / worked and ran errands with no issues.
I cant rem who was talking about the Neulasta shots I get them the day after and I too have an hour to my infusion center but I get them at a place close to my house, this week will be the first timethey will come in the mail I have a few nurse friends that will give me the shot I could probably do myself but my one good friend likes to come check on me and has offered to do them.
Those of you that have younger kids how are they dealing with your cancer? My children have done well I am very honest about things with them.
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good to see you are all doing well. Lovely photos. Today is a good day with me. I cleaned my house from top to bottom, changed bedclothes etc. and am now going out for coffee with a friend. It is great to be feeling good again, thank God.
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Numb - so glad to hear this! I'm in the crash zone feeling yukkos but I'll think of you out and about and feeling good and that will lift me up!
A
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Name - Nancy
Age - 50 spent my 50th birthday getting my Neulasta shot - I guess better than an actual treatment!
What chemo cycle I'm on - Just did round 3 of AC yesterday - one more in 2 weeks then on to 12 weeks Taxol
Children - Daughter - 23, Son - 18 high school graduation next month then on to college in August!
Location - just outside Philly PA
Hardest thing so far - Anxiety and fear in the beginning (still have some fear before each infusion), hair loss has been really tough
Hats or wigs - mostly hats and scarves. I need to go back to the wig store because I think my wig looks totally different now than when I bought it! I have a hat with hair that I've worn a couple of times.
Current hair status - all gone! Wish the weather would finally warm up here - my head is cold even with a hat on!
Favorite quote/advice/song - I don't know any deep quotes! I'll go commercial (literally) - Just do it. And in my current situation - this too shall pass.
Had my 3rd round of AC yesterday. So far, so good. I have lorazepam to help me sleep during the steroid days so I hope that helps. I'm doing the auto inject Neulasta this time around. My husband is away for work and I've been worried each round that I would feel too awful the next day to drive myself to get my shot. Plus I'll need it after every Taxol round and didn't really feel like going there 2 times a week all summer (plus the doctor visits)
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ANNIE - Hope you are getting better. Lovely photo of you.
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NJR426 - HAPPY BIRTHDAY. Hope you had a good day..
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Here we go!
Name: Susan
Age: 56
Chemo Cycle: I will be on #3 out of 12 of my Taxol, herceptin and perjeta tomorrow. After that I have 4 A/C (two weeks apart) then herceptin for the rest of the year. Lumpectomy is after the A/C.
Children: Two beautiful daughters, Mia, 30 and Kaia, 26.
Location: Bay Area
Hardest Think So Far: It took 3 months from the time we knew I had breast cancer to finally starting treatment. I have a non aggressive form and a ton of tests were done. Including 10 core biopsies on my breast where they found HER2+ on a tiny thread of one of the biopsies. My oncologist (UCSF) knew what she was looking for. Not knowing what we were dealing with, and also having a scare that it had spread to my liver was so difficult. Liver is fine. Now that treatment has started, it is so much better, mentally. Especially when you hear that they are super positive about outcome.
Hats or Wigs: I am cold capping and at day 14. So far, no shedding, no hair loss. But I understand it could happen any day. We are intense about the process. And luckily UCSF has freezers and a person who makes sure your caps are in 2 days before, etc. I still exercise every day (except infusion day) but do it early in the morning or with a fan blowing on my head to keep it cool. I follow all the other instructions to the T.
Current Hair Status: Still have everything. And I mean everything. ;-) Ask me in a week...
Favorite Quote: "Out of suffering have emerged the strongest souls; the most massive characters are seared with scars." ~ Kahlin Gibran. Also: "I decide" and "Not My Story!"
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Numb - Thank you! I did have a good birthday. My sisters surprised me with a wine and paint party (don't know if you have them there but they are popping up all over here). I'm the world's worst artist but managed to paint a decent picture and we all had fun. Definitely took my mind off all of this for a day. Had to limit wine since I was going into round 2 the next day. Kind of a bummer since it was one of the few times I wasn't driving and would have been able to drink!
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creasteyourownsunshine: I have been very open with our three little girls (6 and almost 3 yr old twins). They check out my port almost daily. We talk about having my breasts removed to get rid of the cancer. I felt like i needed to be able to explain why I was losing my hair, sleeping more and would not be able to carry them around once I had surgery. You can see the gears turning in their minds sometimes, but I feel it has been a positive approach. I started with "mommy has a mass in her breast and she is going to take some medicine first and then have it removed. I am going to be okay but will be a little sick for a while" I even let my six year old participate in shaving my head. We made it a party.
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Great stories and love the sharing! My GI side effects are so much better and I am grateful for that!
Agharta: You look gorgeous with both your "real" hairstyle and your wig! Though I've never been to Turkey, Turkish food is on my list of absolute favorite foods, and a former intern of mine is from Turkey and brought me a lovely copper coffee set that I adore for its intricate beauty. I would love to visit some day.
Limno Gal: I did not know about the chlorhexidine. I am going to write MO and also ask /tell chemo nurse about this. Thank you for the help! Really appreciate it.
NWKgoldfinch: We have similar professional backgrounds; I understand where you are coming from. I made a decision--for the first time I think ever--to put me first right now. I'm not organizing everything. I have slowed my life down immensely. I am using this as an opportunity to savor things a bit more slowly...and I'm rethinking everything. I am enjoying time to read, watch Netflix series, etc. I miss not having a lot of energy, but I am using what I have for the things I really want to do most. And those who really love me--friends and family--are quite happy to accept this new "me". But the brain fog is hard and real but I don't worry too much--though I have one work matter I have to manage( though I am off work for now, but no one else can handle it as it is a very special matter)..but I just use vastly more prep time and only first thing in the morning.
As for the game:
I'm in my 50's, have two children off at school.
Am about to do #3 of 12 weekly Taxol/Herceptin cycles, then 9 more months of Herceptin infusions every 3 weeks, along with 5-10 yrs of the AI drugs.
The hardest thing for me so far: facing the idea that despite an incredibly healthful diet for years, exercise all my life (I love it!),and regular good medical care, I still got hit with this. I know illness isn't "fair" or people's fault--but I did all the "risk mitigation" and I still got cancer! Maybe I should have eaten more cake!
(Don't worry--I did eat it, just not every day....) It's a complete loss of control over my body and that makes me mad. I have lots of worries, but also lots of fight in me. Fighting now means taking care of myself, slowing down, resting, and maybe making some lifestyle changes to have a less stressful life post-treatment. Between work and caring for an ill family member who lived with me, and some other family issues, my life has been very stressful-for at least 9 years.
As for hair, my head is itching and feeling odd, and in my cycle hair loss usually hits at day 15-21, which begins this Sat for me. Hoping I'm in the 5% on Taxol who don't lose hair but it doesn't seem likely, so getting it cut short Thursday (it's shoulder length and straight blonde.) I have already acquired chemo scarves and hats and ponytail hair caps and a halo wig and have a regular wig on hold...Plan to mix it up! Will burn if I just go out bald--I'm super fair skinned!
Quote/Advice/Song/General life thoughts: Be humble. Be kind. Be grateful. I don't know what kind of struggles or troubles other people have had or may be enduring right now. There are many others worse off than I. Yes, I have cancer, but I have good things in my life, and I'm not going to let cancer make me forget those good things.
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Here we go!
Name: Nancy
Age: 43
Chemo Cycle: Just had #2 of 4 of A/C on Monday. After that I have 12 weekly Taxol
Children: Three amazing boys Twins Nick and Sam 13, Michael 11
Location: Central new Jersey
Hardest Thing So Far: Having to take a leave from work. I work in a fast pace environement and my project requires international travel. Just can't keep up with all my appointments (forget side effects). It's a paid leave but I miss having a purpose. Feels like I lost part of my identitiy.
Hats or Wigs: Hats. I have a wig but don't plan to wear it till I go back to work. Possibly the halo before then.
Current Hair Status: Shaved yesterday – still in the mourning phase
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CJSHARMA - Best of luck tomorrow on your 4th and final round of AC. Let us know how you get on.
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Thanks, Numb! I will definitely let you know how I'm doing.
Nancy - I would feel lost without my job, too. It keeps me focused, and takes my mind off of things. I'm sorry you have to deal with that along with everything else.
Zo - I so agree!! Yes we have cancer, but I follow Humans of New York on Facebook and he's highlighting a pediatric cancer center - we at least had a chance to live more of our lives. Those stories break my heart.
I love all of the stories - especially the ones of getting the kids involved. We have some incredible moms in this group!
My doctor is very pleased with the shrinkage so far! I'm going in for another mammo on the 23rd - right before I start Taxol. We'll see if it's shrinking as much as we hope. I'm kind of rethinking the lumpectomy. I am convinced that radiation is at least partially to blame for my cancer to begin with (I lived 15 miles from 3 Mile Island in 1979 - I have no family history of breast cancer, but my cousin who was also in the area also got breast cancer). So, the idea of a lumpectomy and MORE radiation after seems like I'm throwing gasoline on a fire. I'm going to talk to my surgeon. I know my insurance will do what ever, and my job will support me. So gang - which did/are you opting for and why?
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CJsharma: I initially wanted my breasts removed immediately, but then I spoke to several oncologists and breast surgeons and was convinced that the survival rate is the same for lumpectomy vs double mastectomy. So then I decided neoadjuvant chemo and lumpectomy. But then my genetic testing came back and i am positive for the TP53 gene which gives me a 100% chance of developing cancer by the age of 63. So, now I am back to double mastectomy. Pretty fucking crazy ride to come to that conclusion, but with the gene it is not recommended to do radiation because it may lead to cancer at the radiation site. I also decided to have an ovariohysterectomy because my cancer is estrogen positive. If I just have my ovaries removed, then I would go on tamoxifen, which can cause changes to the uterus and guess what, cause cancer!! so I will likely be placed on anastrozole. Makes my head spin thinking about it. Luckily my sister is an ob/gyn and stays very up to date. So now my family is being tested for TP53 to see is any are carriers. Will get daughters tested when they are a little older. Sorry for the lengthy, mundane answer.
Just for fun, I bought three colored wigs at a party store today. Going to wear the purple one to work tomorrow to freak out my boss. One of my clients today is a 19 yr breast cancer survivor. Have a good night everyone.
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CJSharma-I had the option to do mammosite radiation (vs external radiation) after my lumpectomy, which I chose to do. I had no trouble deciding to do radiation. Honestly, the radiation exposure bothers me way less than the chemo. In many ways, radiation is easier to measure and control and the effects are more predictable than chemo drugs.
I probably came to my decision from a different perspective. I have spent the last 25 years cleaning up hazardous waste sites and doing community emergency response work-lots of exposure assessment, lots of toxicity assessment, lots of hazard/cost/benefit analysis. As a matter of fact, this experience has been a freaking lot like work-only more personal.
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