Starting chemo April 2019
Comments
-
Ilovevermont - your pixie cut looks awesome! You will have no problem when your hair starts to grow out...you will be beautiful at all stages of growth!
0 -
PrincessOfMeh,
Yes you are so right! Every day, something you love. Physical, mental , whatever you can or want to do!
They have an “Oncologist Nurse Navigator that helped me when things kinda fell through the cracks in the beginning for me. She said speak up and she also spoke for me. I got alot of information from the actual Iv nurse the first day of chemo. She asked if she could get me anything. “ I smiled and said yes, the latest information or my oncotype report and pathology." (Some people don't want to know, I do)15 minutes later, in my hand . She said She printed it but no questions to her. She was awesome. Suggested I bag it for later since she wanted me to be as mellow as possible. Funny where you can get information sometimes.
Never hurts to ask right?
Heres My lunching bag. I broke it but think some tape will keep sand in bottom .. It makes me laugh and get physical. I couldnt believe how much it could handle and pops right back up! I wear smal soft gloves to be nice to hands.. helps with stress. Tee hee
Dorene
0 -
I think im posting things wrong places?Im sorry everyone.
Dorene
0 -
Ilovermont, I LOVE it. I know, I know. Been there, done that, got the psychological trauma, LOL, but I think the cut-in-progress really looks good and I'm glad you found the company to do your wig, if that's what is most comfortable for you. But girl, I think you are totally rocking the current do. Nice!
ETA: I bought several wigs last time and one was a halo wig that I really liked in the summer with a light hat. Not as hot on my scalp for outings. At home, I invariably just did scarves, do-rags, I even ordered a Survivor buff for the sheer fun of it, whatever made me feel good and happy. Everybody will be different, just do what's right and comfortable for you. :-)
0 -
the pics are awesome...
Princessofmeh - you are a hoot. I love your inspiring posts.
the punching bag is cool.
while most all SE's from first round are behind me, still having lower GI issues, bleh. I guess it's a good thing I'm on house arrest...
I wish everyone a peaceful weekend.
0 -
Yeah, now I want a punching bag too. Twelve, you are a bad influence, LOL. Rest of my weekend is hopping busy, but might have to take some time Monday to browse punching bags at Aliexpress, which is ordering direct from China mega cheap, if y'all don't know about that yet. Because steroid-induced shopping sprees are a thing, y'all. My story and I'm sticking to it, anyway.
0 -
fac03. I promise the port will feel better soon. I had lumpectomy before I got my port and my surgeon also did my port. He told me to use leftover pain pills for the port discomfort. I was on Tramadol. I only took one after port placement and then OTC pain relief. Ask for pain meds if you need it.
You need to make sure to get Elma cream when they prescribe your post-chemo meds. Put a small dollop on plastic wrap over port for 30-45 min before they access it for chemo pre-meds.
You are going to be fine, keep leaning on us for support.
Absolutely get a copy of every report. They won't always post it to portal. But ask for everything. It's your body, your treatment, your results. Insist
0 -
ILOVERMONT,
Love your pictures! Such a cool idea to get a halo or full wig of your own hair! Can’t wait to see it!
My hair is holding fast. Scalp feels normal, hair solidly in place. But I got a pixie cut 6 weeks ago, and now it’s too long for any kind of style. (I know, should be the least of my worries). I want another hair cut, but think what’s the point, it’s bound to start coming out soon, right? I’m day 12 from 1st chemo.
I have a wig, hats and scarfs all ready to go. Maybe I’ll start trimming myself.
Have a great weekend everyone! Spring fever here 🌷🌼
0 -
I walked the whole 3 hours of Pokemon Go Community Day yesterday (after making the Game of Thrones premiere desserts in the morning, before) so, sadly, didn't have the oomph for getting hair cuts yesterday which means that is definitely on my to-do's for today. Cersei walk of shame cut, here I come, LOL. Daughter wants to get our cuts later this morning, then go to PetSmart to have Easter pics taken with her dog and me with one of mine (we have 2, but the puppy is still too rude to be in mixed company) this afternoon. Could be interesting.and fun, why not. Then home to cook the last few GoT feast dishes. Boy, am I glad it's too soon for my taste buds to change. I'll cook up a storm throughout chemo anyway, did before. I adore kitchen adventures, but I had to adapt what I cooked last time when I lost the ability to taste salty foods, primarily relying instead on dishes that didn't lean so heavily on salty tastes and using my fam as guinea pigs to make sure anything that required it was salted properly (not like I could tell, LOL). But if you're worried about that, no need to. I cook like a whirling dervish, true, but we ate very well through chemo last time, that's possible. My Game of Thrones festival of woot should taste like it's supposed to, though, no adaptions necessary, so woo hoo!
Could still be riding some of the steroid jangle yet, but I actually feel okay. No fatigue truck so far. In a way, having already done chemo once before is a help because I know what to look out for and what to do if X goes down, but also weird because I"m on different meds so my timing seems to be very different. In 2015, day 3 was my fatigue truck day (and steroid insomnia night). This time, insomnia hit the day of and yesterday was my day 3, when I walked for miles and miles which I definitely wouldn't have been able to do on my fatigue truck day. Lesson on paying attention to my body and not getting too cocky.
I suspect my new diagnoses/treatment plan/etc isn't showing up in my signature because I haven't settled on stage in my settings here. Onco is saying I am stage iv, but I'm not because mine hasn't spread to bones, brain, lungs or liver. Right now, it's a regional recurrence only, lymph node at my clavicle, which all the med lit I've seen says is 3c. My plan is also aggressive, with intent to cure by my onco's own admission which definitely doesn't sound like stage iv either, even if my odds of a cure are shall we say not so hot. As long as we're doing the absolute best we can to fight this and keep it from spreading, I don't care, not worth stressing over, but it's bugging me that my dx/plan isn't showing up in my sig so I might go ahead and set it for iv anyway. So if I figure out how to get the dx etc to appear, don't nobody freak out.
ETA: fixed it so latest diagnosis and treatment plan (so far) shows in my sig now, but can't figure out how to mark tamoxfin as finished (I'm triple neg now). I also set me at 3c because they'll drag me into iv kicking and screaming and only if/when evidence of spread warrants it. If/when my treatment plan is for stage iv, I'll change that, but not one stingy nanosecond before, nope, nope, nope, land of nope all up in my house, LOL.
0 -
PrincessOfMeh,
Not one second! That's sounds like a plan to me. Any other scan coming up for you?
May your treatments go quick , darnit!
Dorene
0 -
How is everyone doing? I am on day 5 from AC #2 and like the last one, feeling ok. Had one small canker sore, and not a great appetite, but able to work, go to the gym, regular stuff. I wore my wig at a work conference this weekend and I got a few comments about my hair looking nice, different; it seems like people just thought I had it nicely colored and blown out. I don't think anyone suspected. All my hair fell out and it does feel upsetting to me to see myself bald; it really has so much symbolic meaning in a way other things don.t' . There;s no way to deny to myself what is going one and how frightening it can be. Hope everyone is doing well,
0 -
Hi All,
1st day of chemo. 1/2 way through treatment so far so good. Yesterday, I had my hair transformation party from long to bald, there was around 45-55 family and friends that came out to support me. A little emotional but mostly a good time. I will try to catch up on everyone's post later today.
0 -
farfalla, so sorry about your hair. I know it's emotional. And truthfully everyone is entitled to her own reaction to losing it.
Look how different we all are on this thread. It's OK to be sad. Hope you can resolve it in time. Plus we wouldn't have so much to talk about if we weren't talking about our hair!
Love all the pics of the ladies and their cuts and wigs. I am not brave enough to put pics of my real self on here.
I am still cold capping w Paxman. Day 18 since 1st chemo. Had a pretty good shed over the weekend but still have maybe 75%. It keeps coming out mostly in strands not clumps. Wig is ready though when that time comes.
Who do we have in treatment this week? Cheering you on, you got this! 😘 MM
0 -
I have chemo again this Wednesday. I have been feeling so good and so NORMAL that I am SO dreading it. I am on Day 12 and my hair still feels normal. I thought I would shave it over the weekend, but I can't bring myself to do it until it at least starts falling out...which is really soon, right? I am guessing if not tomorrow, then after my treatment Wednesday it will really start coming out. I'm not as ready as I thought. I am dreading being bald most of all, coupled with the possibility of getting sick again after infusion and feeling crummy over Easter weekend. My daughter wants to have people over to hunt eggs, and I guess we will, but my hubby is going to have to handle it for the most part. Combined with feeling bad, I will be immune-compromised, so probably shouldn't be around a bunch of 10 year old girls if possible. Kind of bummed though.
0 -
I am up for #2 A/C tomorrow. Like Kimg, I have been feeling so normal that I have butterflies in my stomach about tomorrow. I don't have surgery pain/twinges at all now too which has made it even better. In reality I did not have too bad of a time with #1 but it was nice to feel good but now back to reality. And with this one comes the loss of hair I am sure. Just wonder what my kids are going to think of that.
I am glad round 2 has been good for others. We will make it through this...just wish it would all go little faster!
Kind of feeling like I need a big group hug..ha! Virtual hugs to all!
0 -
Farfalla6 - I know what you mean when you comment that it brings it all to reality (no way to deny what's going on.). It is quite sobering. It is ok to mourn the loss of your hair. I still get startled when I look in the mirror. One upside I have discovered is that when I have a hot flash, I can take off my cap and cool down pretty quickly
. I'm glad that the rest of the SE's for you are minimal enough that you can continue with usual things. MsMarie - are your SE's about the same as the first also?
Dallas105 - you look great! Hope the rest of your infusion is uneventful.
I don't go back for round 2 until next week (I'm every 3 weeks infusion). Trying to get some important things completed at work and will spend the week getting the house in order while feeling good. Tomorrow I go in for labs and a short visit with the NP. I'm glad to have a chance to ask more questions (ex. why the lingering fevers and headaches). I get a bit scared when my temp goes up as it always seems to over the weekend. I certainly understand the butterflies and dreading your second round kimg and bam320. I'm feeling the same way and I still have another week to wait!
I wish everyone the best this week as you start your next round.
0 -
2nd Chemo today, Hair on day 14 was like a dog shedding. :] Me and my friend and daughter made the most fun out of anf It made it easier.
This is one of the nice pictures. We did some silly things. Before and after. I cant find before one so here me and my daughter.
Good day for all today!
Peace,
Dorene
Its all shaved now... and why are pictures soooo Big???
0 -
Twelvestrings - the pictures are great! Looks like you made the most of it! Love the mohawk!
Thanks for sharing and good luck with any SE's from #2
0 -
LOL, twelve, looks like you had a blast!
Woke up this morning feeling like a pile of messy gah. Back hurts, knees hurt, throat hurts, stomach is wicked rumbly. The aches, I"m blaming on weather changes and the throat feels like allergies honestly, which makes sense since everything's starting to bud up here. Stomach...Well, my youngest had a reward banquet for high school graduation last night, maybe something didn't agree with me. I don't think any of it is SEs, I'm too far out. Isnt the fatigue truck, but sure feels like a truck flattening me regardless. Bleh.
Cool, I remembered how to upload pics! Okay, This is the before of me and my daughter at Petsmart with our dogs before our hair cuts (Mine is very, very long because after 2015, I just wanted to let it grow and grow and grow, lol):
And the after:
0 -
I love the pics! so beautiful. and such beautiful daughters! My daughter is only 15, and I am bummed to be as young as I am with BC because I know it makes prognosis worse, and because today (day 6 of second AC) is the first day I truly feel like crap, possibly because I got my period. so I feel queasy, crampy, stomach in knots. exhausted, couldn't sleep last night. Trying to power through a work day. Anyone else dealing with having periods through chemo? MO said they will likely stop, I was hoping not to get one.
0 -
Fresh back from a weekend getaway to the beach. It was my 'I survived BMX/Rejuvenate before chemo' trip.
The waiting is tough - I wish I was getting ready for round 2 like many of you. Right now I see the onco next Wednesday 4/24 and I'm guessing I will start 25th or 26th with first round?? Not really sure. Chemo University this week!Hopefully I don't roll into a May start! Ugh! Waiting...
I had my port (I think I'm going to call her Polly) in a week ago yesterday. I was surprised that it hurt more than the BMX!!! I had a tough time sleeping that first night - but a few tylenol helped and the pain subsided quickly. Now it's just WEIRD to feel it sometimes and to look and see it under your skin. Mine goes into my jugular and I can see the tube under my skin.
Thanks to everyone for sharing your days and happenings - it helps easy the anxiety a bit.
I cut about half my hair off before BMX in anticipation of what is to come - but I'm still dreading the hair loss - it will be the reality check and inability to hide the situation any longer when in public (that 'sick girl' look). I am thinking of dying it this weekend when my son is home from College. (I've never died my hair in 50 years - except for sun-in when I was a kid
) I'm naturally sandy blond - with a little gray in there. Maybe I'll go RED or BLACK!Good juju & thoughts for everyone - hope your days are going as smooth as possible!
0 -
Someone mentioned getting copies of records/path reports. I had to ask for a full copy of the pathology when I did the follow up with the surgeon. They didn't post the full thing online.
I also learned to ask for a full copy of your records from each of the doctors at some point (and especially if you are questioning anything). I learned this when my husband had prostate cancer. The notes the doctor took and wrote down in the chart were different than what he told us verbally. It really was very enlightening (and a little disturbing). I highly recommend requesting a copy next time you go to the doctor. Granted it may not be different or it could be just the verbal vs. written delivery but you have a right to have copies of all documents in your file so don't hesitate to request if you wish.
0 -
Oh, almost forgot, Twelvestrings, I had a CT and followed up with a pet/ct before starting chemo, all good. I know we're going to do another pet, but I think that'll be after treatment, barring any symptoms that prod us to do it sooner I imagine.
0 -
Hi All, Love all the pictures, everyone is looking so beautiful! For me day 2 after infusions, feeling pretty good with the steroids, really dry mouth, slight headache, buzzing, blurry vision, I worked today and was very productive. I had to go in today for my Neulasta shot. Finished my first round of steroids tonight. Hoping to get a little more sleep tonight but not counting on it until the steroids wear-off. Good luck to all, stay strong, we got this.
0 -
Treatment #2 is in the books. Things were pretty uneventful. I did get another anti-nausea med at infusion in addition to the olanzapine so I can take a lower dose of it the next three days. I did not like how I felt on the olanzapine at all. My hair is still showing no signs of leaving me other than my scalp feeling tender. I am needing a hair cut but obviously don't want to do that but I am not really wishing it would start falling out either!
It is just really hitting me how freaking long this process will be
. 6 more treatments of chemo. radiation, surgery to my left breast to match the right, nipple tatoos. Ugh! Hopefully getting back to work will help me focus on other things than me!Dallas105 - Thanks for sharing the pictures. Your hair is beauiful and will be again. 45-55 people attending your hair party? That is awesome!
Princessofmeh - great pictures. You and your daughter look so much a-like
Kimg - goog luck today!
Farfalla6 and msmarie - glad things are going as good as last time!
Alicesneed - glad you had a good get a way. Keep us up to date on your start date.
DebraC - did you have chemo #2?
Enjoy the day everyone!
0 -
Good morning!
Bam, chemo #2 for me is next week. I go every 3 weeks. I almost feel normal this week. Well, my taste is totally off. Everything tastes blah or no taste. So strange. My hair started coming out after complaining it needed a haircut. Not coming out in clumps yet, but every time I brush it or scratch my head, it’s coming. The back top of my scalp is very tender this morning, so today I may get clumps when I get in the shower.
Loving everyone’s pictures! Keep me coming.
0 -
When I asked my oncologist about nutrition her only comment was to stay away from soy since I'm estrogen positive. Curious if any of you were told the same?
0 -
So my period also now seems combined with either a UTI or chemical irritation reaction to the cyclophosphamide. Peeing every 20-30 minutes. Called MO office this morning but haven't heard back yet.
0 -
My cancer center has a nutritionist who comes on certain days now, but I've always done the reading on what I should be eating myself. Now that I'm triple neg, I can have all the soy I want, but I avoided it before. Also severely restricted sugar (meaning I avoid it when at all possible, but you're crazy if you think I'm going to make my own ketchup or whatever to entirely eliminate the random sugars added to basically everything we eat) and cut out most processed foods. My cooking is loads better than processed, no big loss if you ask me, LOL. I load up on antioxidants (although now that I'm in treatment again, I'll have to give up berries unless they're frozen if I remember right, sad panda). There's so many good, really good options, though. I focus more on protein during chemo too. Breakfast is invariably a banana, cottage cheese, and a hard-boiled egg. I can eat natural peanut butter with a spoon right out of the jar if I want because nobody else in the house likes it, the heathens. Only juice I can think of that I'll voluntarily drink is Pomegranate because of all those lovely antioxidants.
The important thing, really, is to keep eating. When things start tasting weird, experiment to find what tastes good for you. I'm a big fan of lifestyle changes and learning to live healthier, but cutting ourselves a little slack while we're slogging through treatment isn't IMO completely untoward. We're all probably on steroids and I gained 15lbs on that last time. Egads. Normally, I would lose my mind about that, but in treatment? No. I'm looking forward to it, went out to buy fat clothes last week, LOL. I'll turn into a dumpling, but I'll be a glorious dumpling, thank you very much, at least until my onco says it's okay to drop the weight again.
0 -
Princess of Meh, I agree about cutting ourselves some slack where reasonable. I was very strictly keto during chemo but would have a piece of bread or potato if that was the only thing I could imagine eating post chemo... once when I was unappetized, exhausted, and chemo-hangry, I got the idea "ham and cheese croissant"-- and it sounded like it would be very tasty!! I called door dash and had them bring me two!! Which I gratefully inhaled in a land speed record.
0
