Who is starting chemo in September 2016?
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I'm way behind on reading posts so just a couple of quick comments.
Kdtheatre, because if your situation, I was very aware of my slightly below range sodium on my port surgery lab results. How terrible that you had the problem a second time despite your preventive measures.And your period, too? UGH! I don't miss the latter. Let us know what your doctor recommends.
Not to speak for That Fox, but when I was initially diagnosed as ER / PR - HER2+, my neoadjuvant drug protocol was to be six cycles of Taxotere, Carboplatin, Herceptin & Perjeta, then surgery, then six more months of Herceptin only. Your initial chemotherapy (AC+T) it's the same as mine will be, but I'm triple negative so won't get Herceptin or Perjeta.
Smilethrupain, such beautiful hair. I'm very sorry you had to lose it. :-(
Lyn
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Happy Hump Day!!!
Hope everyone is doing well
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Hi ladies,
I have followed this board for a while because I also started Chemo in September. I was diagnosed at the end of August and started chemo on September 20th. The first couple of days I felt like a rock star but the chemo kicked my rear end (literally) for almost a week. I had fluids a couple of times the week after chemo to stay hydrated. I finally feel really good but I start my 2nd round next Tuesday....
This has really been a surreal time. The hardest part was telling my girls and trying to stay positive and protect them. I have 8 year old identical twins, a 5 year old, and a 3 year old. The twins reacted differently with one crying when I told her and 1 crying the next day. I know they are worrying so I try to be as open as possible for them to ask questions. The 5 year old and 3 year old are concerned about one thing....my hair. They are too funny and their happiness keeps me happy.
Speaking of my hair. I have really thick curly hair but it is thinning out and my guess is that it will be out very soon. My hair dresser (who is a breast cancer survivor) is on stand by. I am on the fence about wigs but I have been stock piling hats.
If you had told me that this would be my current reality back in early August I would have had said "no way"...Amazing how life can change in a flash.
One good thing did come out of this....my genetics test came back negative. I worried about my girls (and will still worry) but at least that gave me some peace for them.
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Smile, your pictures broke even my cold hard heart. I often forget that not everybody here is my age and has entered the hag stage of life where we are pretty much invisible. I'm sorry you have to go through this.
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My 2nd day of chemo (cytoxin, taxotere, neulasta) is tomorrow. I'm hoping it's a fun day like last time, but I'm dreading the side effects. I've been trying to go back and look at others' posts to see what to expect, but my time is limited since I'm at work and stressing out at school preparing lessons for my sub and trying to prepare for next week in case I'm unable to work. My mom is going with me tomorrow, and the genetics counselor is supposed to give me my results during my treatment.
VLH -- Me too. I'm trying to keep up with all the posts, but it is so hard to do when I'm stressed out at work.
Smile - I'm with you on the hair. Mine looks like yours. I had the nerve to post pics when it was thinning, but I don't have the nerve to post now.
DennyJ -- You are so right. Life can change in a New York minute! My hair loss has bothered me but not near as much as I expected.
CC2016 -- Don't you hate the tangles? I don't understand why it tangles more when it's so thin.
QUESTIONS:
1. I read that we need to keep our skin hydrated. Does that begin with later treatments? I've only had one treatment so far, and dry skin has not yet been an issue.
2. Is anyone dealing with blurry vision? Mine seems blurry today. I also woke up with my right eye hurting yesterday. Then today, I had one huge swolen bag under that eye. Just wondering if that's chemo related.
3. I'm not a big drinker, but I do drink on occasion. Is drinking a margarita going to affect us as go through treatments?
Hope all is well with you, girls. I think about you all often and wish you the best.
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Good Morning,
I washed my face this morning and realized that my brows and lashes are leaving. Sigh, The fun never stops
xoxoMichelle
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Hi just checking in with everyone. I hope everyone is having a good week. I am on day 7 of my 1st treatment. Feeling pretty good just very tired. I feel like all I do is take a nap but what can you do. My hair is still good but I think.I am going to shave it this coming weekend I can't imagine it coming out in chunks. Hang in there girls we got this!!!!!
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Lynn, I think that is a good idea, the women having pain in the scalp is because of the long hair. I buzzed mine before I started chemo, I decided I would take control of that since I had little control anywhere else. You will still be beautiful.
xoxoMichelle
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Smilethru..I'm right behind you. Clever way to show your after..I may do that..right now I have a part that looks a little wider...and I wish my daughter would stop saying my pixie cut looks cute..it's not going to stay!! Depresses me a little because I didn't get the cut for a change!
Kd...yep stinky period with this is horrible..but I was told I would only get that one..chemo should stop any more.
That fox..hang in there. Grab a friend to lift your spirits when you feel up to it...the tiredness really throws me too..I get nothing done anymore at.home.
Gonnabepos...forgot to tell you...your story about wearing the cowboy hat to the outdoor concert made me smile..good for you..bet you rocked it.!
Cc2016..I hear you..I feel like I don't want to see myself without hair when it finally all goes....hats I can deal with..but I surprised myself before so who knows....I am definitely braver than I thought I was!
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GonnaBe, my vision gets kind of unfocused the first week after an infusion. It kind of feels like my brain isn't getting all the signals from my eyes and I have to really concentrate. And speaking of dry skin, new symptom after my second infusion: peeling skin on my fingers and toes.
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New MO suggested I get a sodium drip at chemo session, and then I get blood labs done in afternoon so she can determine if I need to take extra salt pills...or go to hospital for my hyponatremia. She said with close monitoring we should be able to deal with this better than first 2 times, and that I should NOT stop the cytoxin (which was an option from the first MO). Made me feel a bit better going into round #3 next Thursday...even if she did ask me three times in my 15 minute appt if I had the flu shot. lol.
On day 7 of 2nd AC infusion. Just took off sea bands so we shall see how i do. I took them off on Day 3 or 4 to take a shower and got very nausea after. Unfortunately so much hair came out in the shower this am - I couldn't bear to look in the mirror after and just kept a towel on my head then attempted my wig. Not sure I am liking the wig though - not only because I know I am not fooling anyone - least of all myself, but it is hot and bothersome too. I ordered one of those halo things - but that just looks super silly on me, as i am not much of a hat person anyway (my head is too huge to ever look cute in hats - although I do love them). ACS sent me a ton of nice hats, but most were too tight or for winter...my BFF is looking around for me to find one, and my niece is supposedly making me some (but I have yet to get them and hate to nag her). The only hat that doesn't hurt is the PINK crocheted one I got from Phil's Friends...but because it is HOT PINK I will not be wearing this in public...just around the house. It doesn't look great on - but it is comfy and I feel covered.
lmencken - my cute pixie is all but a memory now...but still good to know it worked on me for the grow-back.
MFalabella - where are you in treatment, are you done with AC and onto Taxol now? That is when I hear we lose the eyebrows/eyelashes...ugh.
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Kdtheatre, I am nearing my 3rd AC, must be me, they are seriously thin, Taxol is sure to take them out altogether
xoxoMichelle
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I posted this in the August group, but noticed a couple here were talking about eye issues too..
I am joining in on the eye issues. Just my left eye, but it is watering like crazy and is swollen. Dr. today said it was not uncommon and recommended Opcon-A. I'm going to try it and thought I'd share...
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I have noticed my eyesight has gotten drastically worse within a few days after my first treatment...so bad that my glasses aren't really working, but MO said wait until after chemo before I get new prescriptions as it could reverse when I am done...so I will be basically blind both near and far for 5 months!
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KDtheatre,
MINE TOO! I wish I would have waited to get my new glasses. I can hardly see. Sucks. I still have two AC and 12 Taxols to go.
xoxoMichelle
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Okay I thought it was just me...I was gonna ask my MO next Friday about my eye sight...b/c omg...my eye sight is soooo blury at times even with my glasses on...I am sooo glad...I haven't went and got my eye checked and new frames for the year yet.
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As far as eye dryness goes, for me that happens the second week when EVERYTHING dries up; the worst being my sinuses. I'm spraying, moisturizing, lubricating, hydrating and rinsing everywhere.
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Regarding your eyesight... Chemo chemicals go into all of your body fluids, including the fluids in your eyeball. They say to wait 6 months after treatment to have your eyes checked for any damage. I was unable to read any of the books I was given which really sucked as I was looking forward to them. Oh the things we don't think of & are not told about. You guys are doing & looking great. Here's to minimal side effects for all.
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Bagsharon, you are sweet. I have to thank you for the Paula Young recommendation. I went online, ordered a wig that would look like something I'd wear. My human hair wig (>$500) was not cut properly due to miscommunication with my stylist. And it requires a little fussing to make it look nice (the color and highlights are gorgeous). But the Paula Young one arrived today, I took it out of the box, put it one and took my daughter to a playdate with tons of other parents who did not notice that it wasn't a wig. So thank you! I had a real weak moment yesterday, tearing up at the salon when i got the buzz cut, then when I came home, I showed my buzzed head to my mom, and she broke down sobbing. I cried too and that was the only time since the diagnosis that I've cried in front of my mom or the kids. My mom has decided to come and stay with us to help me out, and she has been great support, but I worry, that as a parent, this is taking a worse toll on her than on me or my kids. You know how you worry about your kids and feel their pain. My kids ran in to the sound of the crying, and saw the back of my buzzed head. I had to quickly calm down and put on the wrap, and explain to my 4yr old why i don't have hair (she still asks about 4-5 times today). It's an adjustment, but my scalp hurts where there is hair, and it had to off: everyone who commented that long hair falling is more traumatic was correct.
As far as eye sight, I experience blurry vision on day 2 when the steroids wore off - it was combined with the general dryness in eyes, and metallic taste in the mouth and real out of body experience. I left work early that day. But after I gave myself a shot of neulasta that afternoon and that pain kicked in, everything else faded into the background. I didn't wear contacts for a week because I saw better with glasses, and doing the eye drops.
My skin has gotten dry in week two, so I started moisturizing. Also applied nailpolish. My DH said that yesterday, in the infusion room I looked pale or that my complexion has gotten lighter. So far, my symptoms after infusion 2 or similar to the 1st one. Except today I feel nausea constantly in the background. Haven't taken compasine yet. Neulasta arrived today, so I have the pleasure of self-inflicting excrutiating pain on my body for 48hrs, yippy. Working from home as my boss is away on a conference.
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First, as many other posters are noting, this thread is moving fast. Please know that ALL ARE WELCOME and no one is being intentionally snubbed. If you post and do not get a response, it is not being done on purpose. I recommend if you want specific input on anything or have a question that you would like responses to, put that part in BOLD. If we miss it the first time you post, try again!
I'm not able to read and post daily so by the time I try to catch up, the thread can already have moved on a page or two. I suspect many other posters are in the same situation. Still, I do eventually read every post to this thread.
Next, is anyone else post-surgical and trying anything specific to fade their scars? A nurse practitioner told me that final scar results are 90% genetics. Some people just heal really well and others do not. I pushed for some action I could take and she grudgingly said that I could try to moisturize them. I had already bought Bio Oil based on some old messages on this board and she said just to use what I already had. I apply it once a day. My scars do seem to be fading but I can't say definitively that the Bio Oil is helping. As I told my sister, if I wanted to be scientific about it, I should only be using the Bio Oil on HALF my scars so that I could compare the difference. ha! I do have a couple funny observations. I am treating my chemo port insertion scar just as I am my mastectomy scars and JP drain hole scars and dog bite scar (incident a few weeks before my surgery). . .even though I know that same incision will just eventually be opened up again to remove the port. I've also read that you should avoid exposing your scars to sunlight. Well, I didn't think that would be an issue BUT the little scar on my neck isn't under my clothing and just regular light from day to day is keeping that scar significantly darker/redder than my other scars. Interesting!
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Hello everyone haven't been on..I was in the hospital for severe dehydration. It was brutal like nothing I have ever experienced. Thank God I was only in overnight multiple blood draws. I was so out of it I didn't even feel the nurse stick me for the blood. It was a very scary time. Since then I loss my voice for 3 days. Finally it's back. My skin is like a 12 year old with acne (seriously) I look like hell. My skin is also very dry and my sinus are dry as well. 15 days post 1 treatment and hair is starting to shed scared to pull brush too hard..I know it's the inevitable but still not ready. My 2 treatment is next Wednesday October 12..praying i don't end up back in the hospital. I keep telling myself 5 more and trying to push thru.
You ladies all look so beautiful in your pictures. Enjoy the rest of the week!
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Hayhlyn...wow...glad you feel better... What are dehydration symptoms?
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Hayhlyn, yikes on the dehydration, I hope you are feeling better. My face looks like a 12 year old too....the nurse told me it had to do with the steroids.
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Nayda985..I couldn't drink or eat anything. I lost 16 pounds in 7 days...all I could do was lay in the bed. I couldn't keep my head up. I was weak. I knew something was wrong. Which is why I went to ER. Honestly I pray to God i never go through that again. I pray after the rest of the infusions I am able to drink and eat at least something. It's was traumatizing..and i am far from a drama queen..I can handle almost anything..but that ordeal was truly something to be reckoned with.
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Hahlyn, I also had strong food aversion and was unable to taste much of anything. I ended up making Gatorade ice cubes and ate those to stay hydrated because drinking water tasted like drinking from a puddle. I also had pedialyte popsicles..although I've been looking for them and can't find them anymore but I might make Gatorade popsicles as a replacement. Great way to stay hydrated and keep up the electrolytes. For a few days I went totally liquid with protein smoothiesbecause I just couldn't eat.
Losing my hair today...
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Nayda, how are you doing? Re: hump day, my routine is so goofed up. Your note made me realize that I forgot to put the garbage dumpster out, darn it!
Dennyj, wonderful news on the genetics test. It must be difficult trying to explain the unexplainable to your children. :-(
Gonnabepoz, I'm sorry work is stressful. I reluctantly gave up my part time jobs so I can't blame work demands for being behind. I was just pooped after being at the hospital for so many hours. I picked up Aquaphor at Costco today, but do think of the dry skin as worsening over time. I know steroids can cause blurry vision because they mess with both blood sugar and fluid levels. I would ask the doctor about the adult beverages. I may sneak a sangria margaritas in some time before Tuesday's chemo.
Michelle, Boo Hoo on the brows and lashes!
Lynnc, my oncologist had mentioned the hair bring physically painful if not shaved. So not looking forward to that in a couple of weeks.
Bagsharon, owie on the peeling fingers and toes. Invisible hag? Hey, I resemble that remark!
Kdtheatre, I'm glad your doctor is trying to formulate a plan to head off the imbalance issue this round. It must be hard to have the hair gone.
Kechla, is the Opcon-A available over the counter? I use Refresh eye drops most days since I have dry eyes from Fibromyalgia.
Smilethrupain, the wig sounds great. Do you recall the name in the catalog? I'll probably rely mostly on baseball caps, but good to have options. I'm glad your mom can be there to help.
Leydii, we were counting on your carefully documented Bio Oil experiment and now you messed it up by schmearing the stuff on the entire scar? :-D I was surprised at the ugly, obvious scar on my chest from a basal cell carcinoma removed by a PA at the dermatologist's office. You'd think a dermatologist would be expert at minimizing scars although ensuring the cancer was fully extracted was paramount.
Lyn
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VLH- yes opcon-a is Otc. Tried it last night and eye already feels a little better
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Leydi--In regard to something to fade surgical scars. A few years ago my daughter had breast reduction surgery at a very young age. Her plastic surgeon recommended this gel. She had a total of 47 inches of scarring and we had to buy a bunch of it but it worked. Most of them are barely visible right now. I had some left and since I didn't see an expiration date on it I have been using it on my own scars starting shortly after surgery. Mine are looking really great. The only one that is still visible is the one where the port was put in. I actually haven't been putting much on there because I know I will have to have the port removed and would have to start over anyway. They sell this on Amazon, and a lot of online drug stores. I have not seen it in the stores. You use just a tiny bit and put it on twice a day. You have to use it for 3 months, but definitely worth it if those nasty scars go away. Good luck.
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Blood work good today...all hooked up for #3. I'm hoping I feel decent tonight because I have to attend a meeting with my daughter. She was chosen to be a young council member on a local towns council board. She is wanting to go into politics/law and this will give her a jump start. I have to attend the first meeting with her.
I have found that I like wearing hats and caps more than wigs. They are more comfortable to me. I got a few caps and am trying out different scarves on them. So far so good. I only feel a little stupid in them. My hair is shaved short and I still have a lot of stubbles. It has not all fallen out. I wonder if it will in time of just remain super thin.
I hope everyone has a good and SE free weekend. We shall see what #3 brings me.
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Ware-Keep us posted on how you feel for #3. I'm going in for labs today and my #3 is tomorrow. I still have hair left too. I'd say about 1/4 of it. I'm wondering too if it will stay. I did not shave my head although I trimmed it some. My hair is about 3-4" long all over. I'm glad I didn't shave it. For now I'm using it to bobby pin the wig to. Stupid thing keeps slipping around! Best wishes today.
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