Chemo starting October 2017
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Jennifer see but yours looks totally normal! where did you get that one from? I have a bunch of beanies that I have been using since I shaved my head so have lots of options along those lines. This wig shopping online is not for the faint of heart
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joyseeker, I didn't start losing my hair until around day 16. I hope yours sticks around some but it just may be taking it's sweet time. Hugs!
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Scaligirl- a local wig shop. I tried on about 4 different colors and styles. I admit I feel I can't get it to look as good as she did. But it is going to take some practice washing, styling, and wearing. Since is real hair I can blow dry style.
Lisa- I am curious about Carboplatin too. From little I read, it's expensive so I wonder if they prevents it from being used. I want to ask my MO about it before I start taxol. Let me know if you bring it up and what they say. I have to read that Joan Lunden book. I recently bought "Surviving Triple-Negative Breast Cancer" by Patricia Prijatel. I have only skimmed so far, but the book gets good reviews.
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@stage2ire i had bad allergic reaction to my first round of chemo.. Arm and face went real hot. Next day face went red hot and burnt. Second round of chemo i was told to take benadryl my face again got hot and started to burn and took benadryl right away.. Went away with in minutes. I have needed benadryl few times now due to random allergic attacks. Just thought i should share in case your red hot is an reaction. But this heated bald head is sooo strange. You would think it would be cold. But maybe just maybe its medical menopause? Hmmm lol hugs ladies my favorite saying this week is This Too Shall Pass
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I have had a lot of catching up on everyone, but really love reading the posts... Jennifer, I love your wig, I think it looks real, and Scaligirl, that first photo looked really interesting, like if it had some bangs or something it may have worked. I ordered 4 wigs fairly inexpensive online, and you are right, NOT EASY. This was before trying some locally. The first two arrived and the colors were just SO wrong on me, looked good in the photo, but NOT me. The last two came yesterday, and I wore one today. The other may work with some styling. But the one I wear to work I got at a local wig shop, it matches my original color and style better.
Today was my 3rd dose of A/C and all went well. My Onc saw me before chemo today, and GREAT news, my tumor was almost undetectable. He feels confident it is almost gone. Made my day, and my Mom's and Sister's day too. My next treatment is switching to a Monday before Thanksgiving, because everyone is booked up.... so I am sure it will curb my Thanksgiving eating a little... I talked to the Onc about the dose since this last time I had more days of nausea, but he said he had not switched anything... My day of chemo and next day are good, then day 3(thurs) is worst, lasting until Sunday until I slowly come out of feeling mildly nauseated and not myself.
Joyseeker: so glad you saw the movie!! When I saw it advertised I thought, Wow, what a great movie to laugh and take my mind off chemo, I am going to go see it soon, just to treat myself, even if I have to go alone!!! Thanks for the recommendation. On hair, mine started falling out quickly at 16-17 days. I shaved it then and was so relieved to have it off. Wear a hairnet or cap to bed before cutting your hair, it will catch the falling hair so it does not end up in the bed... good luck.
Carboplatin: My Onc mentioned it when he first saw me. He said it was not used as often as A/C and it was a little harder on the body, but he would have used it next if the tumor was not responding to the A/C, but now that I am shrinking, I will stay on A/c for one more does and move on to the Taxol.
Constipation: I had to start using the Senecote, but did not start on it until about day 5. My Onc thought that A/C would cause diarrhea so I did not take anything sooner. I had bought the Miralax but with the nausea just could not drink it... but I double up on the senecote and it has been working. But that first week was miserable until things started working again.
Praying that everyone stays strong!!! and we all sleep good tonight!!
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LisaRx - I hope that you keep feeling better once you ease up on the eating restrictions. I feel a lot better, physically and emotionally, since I've let up on mine. I've discussed it with my MO and "we're at a good place" with our compromise. What we're all going through is pretty harsh and i decided my quality of life during chemo outweighed (no pun intended) the possible advantages of my MO's eating plan. Glad you enjoyed your burger. Yesterday was my birthday and God knows I enjoyed my cake!! :-)
Jennifer - I like your wig! It looks so natural. I have issues with the hair in my face, too, but gotta hide that lace. Thanks for the tip about going slower on the Cytoxan. I'll ask the RN at my next infusion. Also, thanks for the redo on the book. I'll look it up.
Stage2Ire - Good luck starting the Taxol tomorrow!
Scaligirl - get yourself to a wig shop in person, stat! :-) Thanks for making me smile.
Re: Carboplatin - when I first met with my MO she told me that she might prescribe carbo with my Taxol. Last week she's thinking more that I'll just do DD Taxol without the carbo, but it's still up in the air. I assumed that it was because at my first visit the diagnosis was Triple Negative ILC but now we know it's a mix of IDC & ILC. Or maybe it's because my tumor is showing signs of responding? The other change in treatment plan is that I'll likely go on Xeloda after surgery, and then possibly a drug trial for Androgen Positive BC.
I have a side effect question: Anyone on A/C having issues with their toes or soles of feet? It just started a couple of days ago. Just a little sore and burning. Also I noticed my ankles were a little swollen - but maybe that's just a sign i need to drink even more water.
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Happy belated birthday, Agatha!
I don't know what your hair looked like beforehand, so I actually think you all looked great! But I totally get feeling like an alien in a wig. I'm now considering going to a wig shop and getting one fitted for an upcoming wedding in December. I wish that they made some chemo caps that were nice enough to wear with a dress, but I haven't found one yet. Anyone know a good place to find silk scarves?
I got eyebrow supplies delivered today in preparation for those falling out. After watching some videos, I settled on eyebrow powder, a pencil, and a thing called Model in a Bottle eyebrow sealer that will keep drawn eyebrows from smudging off. Not sure when it'll happen but I want to be prepared. I've never had thick, lovely eyebrows so I'm used to filling them in, but never drawing them in from scratch. I'm sure that the first few attempts will be clownish!
Today, after playing hooky from work, I had a Game of Thrones marathon. It was awesome. The only bad thing is that I didn't get my walk in because it was cold and rainy. But I'm seriously considering not going back to work until after chemo is done now. I just cannot stay focused, and honestly don't even care about it all that much right now. I needed to work at first, because, frankly I was scared out of my mind and needed the distraction and my friends. But I'm adjusting. I no longer fear for my life, but have turned instead to getting through this regimen as healthy and well as I can. And having the ability to sleep in, if needed, may be what I need.
I started my chemo on 10/4, so as of today I'm officially through 5 of 19 weeks. 25% is measurable progress. We're getting there, ladies! One day at a time, we're getting there!
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I wanted to reply to two posts while I was thinking about it:
Agatha on the feet issue: yes, I have had that happen several nights to where I could not sleep. I have applied a really great organic lotion and it helps. I thought it was just from the drying effects of the chemo & taking hotter showers now that it is cool, but this may be a SE. I also had one toe that got sore, from being at work TOOOO long last Thurs and thought a blister was going to start... but I babied it and now okay. I agree, think it is a SE too.
Lisa: I am starting to feel the same way about work, it is SO hard when I go in. I work in a small office of only 4 people and we all do multiple things. There is just 1 other woman and she does accounting... and she HAS not been sympathetic to my cancer. I even asked the boss about hiring a part-time flex person to help, which was approved but the co-worker was really negative about it. Our office also works 10 hr days for 4 days and we are off Friday, which I loved, but I can no longer do the 10 hr days!! It just wears me out. And that means, no walking that day, no laying down for a rest, and getting home exhausted and unable to do anything. I tried coming in later, about 9 am, but then if I try to get out early, she gives me the cold shoulder!! I know it is MY problem, and I have to overcome feeling guilty, but it would be nice if she would just say a kind word or something. I have another girl from our next building coming in to help out, but my coworker said she was not helpful... But I have to keep pushing to take care of myself. Especially with the days getting dark early, if I do not walk mid day, it is just not going to happen. I may end up taking more time if this continues. I work for a County government and we have Board of Supervisor meetings, last Thursday was our monthly meeting, I went in at 7:30 am and worked thru the night meeting, which did not end until 8:30 pm... it was the worst!!! I made it but went to bed as soon as I got home. I still have about 250 hrs of sick leave left, so have more time to use, plus I do not mind taking LWOP either... if it comes down to my health or work, I will do it. Thanks for sharing your feelings, glad to know I am not the only one having trouble.
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Hiker, glad I could help. I know that not everyone is in the position to take a LOA to deal with health issues, and I'm so very sorry for that. But if you DO have the option to step back for a few weeks and focus on getting well (plus avoid the stress of dealing with an unsympathetic co-worker!), then I think it's definitely something to consider. I'm so blessed that my co-workers have been magnificent to me, even though it's meant taking on my work as well as their own. I told them I'd never forget what they've done for me, but it is my sincere hope that I'll NEVER will have to repay them in kind.
I slept from 7:30pm to 3:30am. Part of it was because I napped again yesterday and didn't need any more sleep, and the other part is the time change, which my body hasn't adapted to yet. But I'm coming out of the fog and am hopeful that today will be more energetic and productive.
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I know some of us are trying to eat healthier or lose weight. I have started writing down what I am eating and drinking, trying to make better choices and getting those 2-3 quarts (8-12 glasses) of water a day. I have used my fitness pal in the past but I just don't have the energy right now to measure and track my food. So writing down is the choice for me now in a food journal I bought at Michael's. I bought the 2018 one but didn't want to wait till Jan 1, so using the November 2018 as November 2017 dates. I think they make a undated one too. Here is the link if anyone is interested. They always have coupons too on their app.
http://www.michaels.com/create-365-the-mini-happy-planner-fitness-for-you/10531490.html
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So I went online to Wigs.com and bought 2 wigs, with the intention of returning the one I don't like for a restocking fee. FYI, they have a 25% off code right now, if anyone is interested, which brought their prices below TLCs.
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Hi ladies. Been a while but it's because my cycles are every 3 weeks.
Got taxotere + herceptin #2 yesterday. Oncologist checked my tumor, it was measured at 7x6cm on imagery, yesterday it measured 5x4cm, so it shrank! My oncologist was pretty content with the results, esp. after one round. My enlarged lymph node that was 3cm big could not be felt either.
The unfortunate thing is that I got a reaction on my second taxotere, I started having difficulties breathing, so I had to get some benadryl to fix that. Fortunately I only have 1 more taxotere, then I switch to CEF.0 -
For those of you that have had mouth sores, do they start like canker sores? Or do I just happen to have three random canker sores in my mouth all of a sudden??
Chemo is weird s&*%.
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I think that mouth sores can definitely be canker sores. I'm starting to get random sores in my mouth, too. I keep rinsing with baking soda and hoping they won't get worse.
This daylight savings time is killing me. I'm ready to drop right now and it's only 8pm! I'm sick of getting up at 4am. I'm going to try a sleep aid tonight. I hope Zzzzzquil is okay.
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I use biotene dry mouth a few times a day and so far, so good. But I think I had a true canker sore and backed off the citrus for a few days.
Today is another steroid day for me, so crappy sleep. Also took a Claritin tonight having some bone pain in upper back. Debated to take Tylenol PM but think I have had enough drugs today.
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Petey from what I heard people chew Ice when you getting AC infusion. Also your MO would have magic mouth wash you can get from them. Someone also suggested Young Living Hrad Lozenges Thieves.
Jennifer - bone pains I heard beside Tylenol Aleve would be good also.
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I've been swishing with salt water and that has helped my mouth soreness, which has mostly tried to assert in the middle back of my tongue.
My taste buds are so broken right now I can't even taste the salt. I can't taste salt! How is that even possible?
My taste buds recovered after round 1. This time they are stubborn and I am getting eager to taste something again.
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Sorry Jade, my taste buds screwed up from time to time, salt tastes bitter for awhile, so I have to cut back on salt. During AC I love salty food. Best to rinse your mouth is baking soda, salt and water.
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Well it's 4:30am and I'm wide awake! I took an Ativan because I wasn't sure if Zzzzquil was okay. Slept well but woke up at 3:30. Was able to sleep for another hour, but that's it. I guess I'm going to have to try and push bedtime back even further to see if I can re-join the land of the living. I've ordered some Melatonin to see if that helps, but the nurse said it takes a week or so to work.
I'm meeting with the genetic counselor this afternoon. Not sure what that's going to be like. It's a 2 hour appt so I imagine part of it will be giving blood. Anyway, I highly doubt I have BRCA because none of my 10 first cousins or aunts who've had BC tested positive for it. But obviously something is going on there. It'd be nice to get to the bottom of it for my daughters' sake. If you have a genetic predisposition, you're supposed to get tested 10 years prior to the youngest extended relative who got BC and carried the "gene." If not, then the recommendation is 10 years prior to when your close relative (mother or sister) got BC. Well, my 36 year old first cousin got BC, a type that was very aggressive, so if they could identify a gene, then they'd recommend my daughters getting screened at 26 (36 minus 10). If they can't identify a gene, the the recommendation is 10 years prior to when I got it, which is 41 (51 minus 10). That's a difference of 15 years! And I don't want my daughters to wait til 40 to get tested!
A positive genetic test would open up the insurance pocketbook to start paying for mammograms and MRIs NOW. Otherwise, I don't think they'd pay. So while I certainly don't want to test positive for BRCA, I do want to protect my girls if there's a genetic predisposition that they just haven't identified/discovered. Not that I wouldn't pay for screening/mammograms for my kids, but it would be nice if insurance covered it.
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Lisa- let me know how the appointment is. I have the same one tomorrow morning and I have no idea what to expect other than giving blood
I thought I read 30% or less of TN's test positive for BRCA. I have no breast cancer on mom's side even going way back but I don't know fathers side since he signed away his rights to me when I was 4 and my mom remarried.
My understanding if I get a positive it won't change much for my treatment since I am getting a DMX but should also get ovaries removed if BRCA.
But it changes everything for my daughters future.
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Aaaannnnnd the hair is shedding 😳
Mouth sores. Mine were pea sized painful bumps that burst and resolved with diligent mouth rinsing. Hopefully I experience the same next round.
Sores on my scalp. Like acne? I’m washing with baby shampoo. Other ideas?
I meet with my surgeon today for a follow up. I remember making the apt when I left the hospital thinking it was a long ways away. But here it is. Crazy.
Be good all,
Sara
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Petey - my mouth sores are in the back on the sides of my mouth. I can't really see them but boy do I feel them. Even though I am diligent with Biotene, salt/baking soda rinse + a steroid mouthwash they are still very uncomfortable. It sort of feels like I am constantly biting the side of my tongue and burning the tip. My tongue goes very white on some days - not sure if that is related to the sores or not. Right now I also have strep throat and a raging toothache - it's a party in my mouth :-)
Lisa & Jennifer - I had my genetic counseling about a month ago. The blood draw took just a sec and all the rest of the time was sitting in an office across a desk from the genetic counselor. I had already filled out about a 10 page family history questionnaire so we went over that. We discussed the genes that she would like to test for, and what the results of each test could mean for me and my family. For instance, one gene mutation I was tested for (which thank God I didn't have) was a marker not only of breast cancer, but also predicted an 80% chance of developing stomach cancer. The recommendation if you have that mutation is to have the stomach removed. It took about 2 weeks for me to get the results that I was negative for the genes they tested for. I have 10 nieces and was VERY relieved to tell them that.
Sara - Have you seen a Neutrogena shampoo called T/Sal? Maybe that would help.
I'm facing a big decision. I think I might need to go on disability, or some sort of medical leave. I haven't been able to string together more than 2 consecutive days as work since my second week of chemo. I'm single and only have my own income to rely on so the financial situation is a little scary. Not to mention that in 2 months with the new year a whole new deductible of at least $6500 kicks in. I have to have a real hear-to-heart with my boss this week. I love my job and really am afraid I'll lose it.
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Agatha, I had a white tongue and it was thrush. They prescribed a swish-and-swallow rinse. You might want to ask your MO about it.
Good luck with your decision re disability/leave. I've heard that the Taxol part isn't nearly as hard as the A/C but I honestly don't know. I'm feeling okay physically, except for some indigestion, but I cannot concentrate on anything. Good luck to you.
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I’m going to finish my taxol tomorrow, I only end up with 9 sections instead of 12. Was it hard for me, if I don’t have neuropathy that would be better. Also taxol makes you fatigue after 4 to 5 sections, I have to take afternoon nap or my body will pass out by itself. It’s a weekly does, my day 1-3 are good, 4-5 tired, 6-7 better. Joints pains is common also. Many people have Big D, I got it once only. Some people said taxol is much easier for me they have different SE, I hate my fingers and feet get numbness and you never know is this temporary or permanent. Last night I beginning felt some pains on my fingers. If you have any question you can ask I will try to answer them.
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Lisa, tough decision, can you take a short leave from your job? Once you get to taxol maybe you can more days.
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LisaRxCincinnati,
I so admire the fact that you can get to do your walks. I am glad you mentioned that the Neulasta is probably the culprit for the beyond fatigue feeling I have experienced. Everyone recommends to exercise, so I did at the fitness center I am a member of. Each time, my temp skyrocketed the day after, so that ended that bit of normalcy. I thought my lack of energy and strength was mainly the chemo and now I am anemic, so breathing is often labored, so that makes all of this so much worse. The mere fact that you really don't have the energy sometimes to move is exhausting. What's the really depressive part for me is there is not course to chart for each treatment. You wake each day not knowing how you will feel and then when you do feel great, it's like you can forget - if only for a second what your body has been through.
Not a club any of us wanted to be in, but I am glad I have found support among you all.
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So I'm back from genetic testing. It was pretty basic. I spit in a jar to get a DNA sample and they'll contact me in 3-4 weeks with results.
The better part of the meeting was going over different genes and what that might mean. What a double edged sword it is. If you have this gene, you have 6x the chance of getting this or that cancer. If you have that gene, you have 3x the risk of getting that cancer. I mean, I get that if I have a gene that makes me susceptible to breast cancer, I should stay on top of screenings. But what do they expect people to do when there are gene mutations that lead to an significant increase towards getting, say, pancreatic cancer? You can't remove a pancreas prophylactically! And they don't consider the loss to a person's quality of life when they'll forever live in fear of getting something that may never come to pass.
Egads.
Anyway, they are going to test for BRCA 1 and 2 and some other BC genes that they've identified. They did recommend that my daughters start getting tested at 26 due to my cousin getting BC at 36, because there clearly is a family history even if a gene isn't identified. If I test positive for something, they'll also test my kids. They'd have a 50/50 chance of inheriting it. But none of my family members had the gene, so if I have it, I'd be the first. She said TN is normally inherited, but none of my family members had TN.
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Paulette, congratulations on finishing up Taxol tomorrow. Some people are only getting 8 rounds from the get go, so I think that 9 is great! Have you tried icing your hands and feet to prevent neuropathy? It was recommended by a few people, so I'm going to try it when I start Taxol in 3 weeks. What does "Big D" stand for? Diarrhea? If so, I get that now with A/C, so maybe I'll get constipated with Taxol. I'm so weird.
NewNormal, I do try to get my walks in. Some days are slower than others. My goal is 30 minutes of some exercise per day, but I don't always meet that goal. Two days ago, I changed things up a bit and tried beginners Tai Chi (free videos are on YouTube), which is recommended for chemo patients, along with yoga. Let me say that it LOOKS very easy, but I had to stop because I was so exhausted by the unfamiliar poses. Another video, Qi Gong for Beginners, has some moves that I think would help everyone, including one where you just stand and bounce for a few minutes. It's called "shake the tree" or something like that. Anyway, it looks very weird, but it got my lungs expanding and my blood flowing, and it's low impact. If you're looking at something you can do at home, there are all kinds of videos on YouTube.
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There was a lot of activity today. I don't even know where to start responding!
I chewed on ice during my first AC, so I was hoping to avoid mouth sores. It's not bad yet, but my mouth doesn't feel great either. Rinsing with Biotene more today has helped quite a bit. If it gets worse, I'll ask for Magic Mouthwash too.
Sara (Joyseeker - not Sara me petey LOL) - I started getting bumps on my head like too. I know our treatments were a few days apart I think, so I'm not surprised to see myself getting bumps like that too.
Lisa - waiting the 10 days for my genetic results was probably the worst part of this whole ordeal. Even worse than waiting for the biopsy results I think. And I never thought about how I would feel if I was genetically disposed to some other types of cancer. I'm sure it's all making your head spin a bit. I wonder why yours takes 3-4 weeks and my only took 10 days. Maybe they are doing a bigger panel on you or something.
I've been saying and saying I need to do yoga or tai chi. I need to find some good videos on it though there are places I can go around here that have specific classes for cancer patients.
Agatha - I hope the conversation goes better than you anticipate. Maybe they have some options for you that you don't know about. Good luck!!
I felt pretty darn good yesterday and today, so I had lunch, breakfast, lunch, with friends and ran some errands. I'm trying to cram stuff in before round 2 on Monday. I'm anticipating laying pretty low next week.
I did have to go to Costco and buy some Costco sized Miralax. I have a system now of Miralax in the morning and Senekot in the evening and that seems to be keeping me regular. The nurse wanted me to keep it up approaching round 2 so that I didn't end up in trouble next week. *sigh* Nothing fun about Costco sized Miralax. Oh well...I suppose it could be worse.
Hang in there everyone!
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Oh yes I ice my hands and feet during taxol and my taxol infusion time is 3 hours long because I have reaction. Big D is diarrhea. I hardly get diarrhea only once in AC, now once in taxol. One more common SE for taxol is hives or rashes, also dry sinus that you get bloody nose very often.
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