Starting chemo July 2014
Comments
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Coyote,
You look wonderful!!! Shirley
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Thank you for the kind words about the gourd and selfie. The gourd was so much easier than posting that photo! It is amazing how exposed losing our hair can make us feel.I tried to look back and find out for sure, but it is you Chaos who worked with pyrography? Sorry if I'm wrong, That is what started my gourd life and a basis for a lot of what I do. All of the line work on the piece I showed you is burned. I have a large collection of Flemish Art ware. For those of you who may not know what that is, it is burned designs on wood. It was rather elaborate and quite an art hobby for women in the late 1800's. They would use ether as the fuel for the burner and wrap their fingers in asbestoses to protect them. There's a health tip for you.
I'm beginning to get brain scrambled from the anti-nausea drugs. My fingers don't find the correct keys! I get scrambled with my med schedule too, kpmacmill. I put my schedule on a word table and print it out with spaces for additions and corrections. Hubby helps me keep it together. He even sets an alarm for the night time doses if they are necessary.
NOW sells L-Glutamine in powder form in kg jars. I ix one tbls in 1/3 bottle Glucerna 3x a day. I use one of those little milk whips for coffee drink in a small paper cups. It mixes great and is really a treat. I imagine other liquid meals would work too. They are thick enough to suspend the powder. It seemed to be the least expensive way to purchase the L-Glutamine.
I hope for a good week-end for all.
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RamblingRose, somehow I missed your pictures, I love the cut on you, and your purple blouse.
Redheeledwomen, I have not had that problem, having a port, but it's something I've heard about, I think in the June chemo thread. That can happen if there is a leak of chemo into the tissue around the IV entrance. It can be harmless, but needs to be watched carefully for any additional inflammation around the site.
Coyote, your post about meds reminded me to tell you about a smart phone app that helps me. It's Walgreen's free app, and it has a scheduler that you can enter your meds and set reminders for taking them. You don't have to use Walgreen's for prescriptions but the reminder is very helpful.
DH brought home some peaches. He had an offsite managers meeting at one of the bosses' house and her peach tree has been enormously fruitful so she asked everyone to take some home. I had one a while ago, it was so juicy I almost choked when I first bit into it. And Cousin brought a tiramisu for our anniversary celebration which we still haven't had. I'm about to have a piece of it. Mmmmm. Nini Ladies
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Wallegator , I'm glad you are doing good! About TNBC I had with 24 and was DX with 35 now so was 11 years without any problem and I think it was a distressed time for me. I was very tired after my girl was born and had no time for myself . I'm doing ok and I'm sure we all can kick but of cancer. There will be always a concern being or not a TNBC because once you have these disease you will worry around the check up time, but most of the time, we will just get busy and forget about these unfortunate journey !
Kilin I think we have the same situation and glad to hear you are doing fine.
I'm happy to see everybody in such good mood today I got very empowerd by the good vibe today. I read the posts but life was crazy here today and u couldn't txt early.
CoyoteNV your art work is amazing !! I wish I was good like you I think us do especial when you can produce something that came from your imagination and apply with your hands and build something so beautiful ! Thanks for sharing
I don't remember clearly who said that was buying eyebrows can anyone tell me where can I order them? I'm afraid to lose mine and they are big...can't pencil them ...
I bought a hat that have little hair around and looks cutie i think will be a solution for me because is so hot here in Fl.
Have a good weekend girls
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Mainlady, Rambling, I am sorry that you have to be going through this and the loss of a loved one at the same time.
coyote, your work is amazing, absolutely gorgeous, I want it!!!
Mommy mel, it was me who got the fake eyebrows. Have not used them yet. I got them online at Headcovers.com. I think ur in Florida and if u do some research u might be able to find them at some hair places in Florida. I don't think the glue they have, which I bought is strong enough, I'm paranoid it's going to fall off in front of someone!!! Imagine that!!! I have some double sided tape I bought at a wig place that I will use in addition to the glue. I tested it out by taping a piece of plastic to my forehead for 2 days and withstood a shower so hopefully it will hold up. They look very realistic I have to admit, and hopefully it works well because the pencilling will not work for me.
Glad everyone is looking good with their new looks!!! And feeling good!
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CoyoteNV you look lovely and such a beautiful round head ! Just show that no meter what you look like a pretty lady that you are!
Rose love it too your smile is very confident
XO
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OMG i totally forgot.....they are finally putting the port in. I have 16 infusions to look fwd to and the more you have the more your veins get shot so I demanded the port.
Question, what is the procedure for putting this in? Guy told me, local anesthetic, 1.5 hr surgery. I am definately going to pop 2 ativans that day cuz how the hell am I supposed to survive this!!! I think I am going to freak out. Does it look bad when u have it in ur shoulder? They showed me the PICC line with the tubes hanging out and I know I wouldn't be able to handle that. So I wanted the port, and now I'm scared I'm going to freak out with it.
Help
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dancingdiva - I had my port inserted early last week under general anesthesia and it took about 1.5 hours. I have two incisions, one in my neck and one in my chest. It took a a good 7-8 days to get used to it and now I barely notice it. The neck incision felt really strange at first and that's what took the longest to get used to. My BS explained the procedure but for the life of me I can't remember any of it. I have horrible veins and always get stuck 3-4 times every time I get an IV so for me, this was the right choice.
It does feel strange at first but after 7-10 days you'll be good
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Hey dancingdiva, don't fret yourself about the port. You will be glad to not have to get stuck every time. Mine was done in general surgery by my bs, but it is not a painful thing. It is weird having a device under your skin, but give it about ten days and you won't even notice it. While you're getting used to it it will be uncomfortable to reach across your chest or sleep on that side. But it shouldn't be painful. It's a good thing, honey. Don't worry about it, it'll be ok.
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JenLiza - thanks for the tip about the green powder - I use the Whole Foods green powder in my smoothies - been thinking about trying Juice Plus stuff - anyone use that? Is it worth it? I'm also going to fill up on alkaline water next to my yoga studio - they give it away!
KiLin - happy, happy news!!
Box - I used to be needle phobic big time - and then I did fertility treatments and the constant needles helped me overcome it. Now I need to work on my snake phobia.
Coyote - you are very talented! Thanks for sharing - and your bald head, too. I hope to get brave enough soon.
Jenkay - love your wig!
Rain - thanks for your kind words. Looks like you also had a tough decision about chemo, too. I never had to watch a loved one die of cancer or else i might feel differently.
Wizard - you will likely be Ok for the first day or two - the steroids tend to protect you (be prepared to be hyper on the days you take them - I hate to clean and I was cleaning the house!....I hope that you don't have any SEs - some folks skate through it without much. I read on one board that someone only had some acne.....oh boy - to be so lucky!
Kpmacmill - keep positive - you WILL keep your hair.
I honestly think that my MO and/or surgeon is trying to piss me off (sigh). At my hospital they never call you when they make an appt., it just shows up on your online acct. (strange, huh? - I've missed appts because I don't check it). Anyway - I noticed last night that there is an appt. for a follow-up mammogram in Dec.. No MRI - really annoyed me since an MRI is what caught this one. I hope I don't have to fight for it - or remind them about what happened the last time. (they questioned my request for an MRI and I insisted). It's terrible when you don't trust you docs - but there aren't many around here. I'm hoping it was an oversight.Just ordered some abbey caps on Amazon (I posted over on hair - and lots of women seem to like them - you don't have to tie them) and also some sleeping caps. My head is so cold yet my hubby says that it feels hot. Weird. I am getting tired of wearing scarves - they get so hot. It was hot today so I went au natural today for the first time in public - at a sporting goods store. The guy at the counter gave me his mom's card - she apparently runs a cancer store for headcoverings, etc. at a local hospital. So, there are benefits to going au natural! I have to say, I wish I would have either gone completely bald or longer than 1/4 inch - I feel like a porcupine - those suckers are sharp! And I splurged earlier today on some fancy smancy scalp treatment hair product from Kerastin - the salon owner told me that it would help the hair grow back faster - money back guarantee - we will see!!
I start rads on Monday - onward and upward. I've done rads before so at least I know what to expect (btw, it's a walk in the park compared to chemo IMO).
Irish/Deb
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More on ports.
My was placed with just IV sedation and anesthetic. The sedation was Versed and something else. They told me it was less medicine than when you get your colonoscopy, which is generally done with propolol.
I was going to take an Ativan beforehand, but I didn't. The placement was done in the Interventional radiology suite in our local hospital. There is a two inch horizontal incision just under my collar bone, they used disintegrating stitches and surgical glue to close it, I was told I could shower the next day, but not to soak it, or go swimming for a full week. And there is a tiny, quarter inch incision about three inches above the port itself, where they fed in the catheter. I don't think that was even stitched.
The whole procedure, which I don't remember cause of the drugs took about 30 minutes, and they made me hang out in Recovery for a full hour.
There is nothing to freak out about. Like your biopsy, the area where they cut will be tender for a while, but no big deal. About six days after my placement, I got some visible bruising for about two inches all around the port, but by then the tenderness was starting to go away. I am now 12 days post port placement and that bruising is starting to fade.
I had my port placed on a Wednesday and they used it the next day for my first infusion...I had asked for a script for Emla, which I read here makes the port less painful to access on infusion day. So I slathered it on and felt nothing.
~ Rambling Rose
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Here's my After Flowbee photo. I'm going to a Look Good Feel Good class
this week, guess we could also call this my Before picture and I'll post
my glam shot after the class!
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about my port:
I had things I wanted to do the afternoon of my port placement (a reunion of employees from a hospital I used to work at and the annual flower and garden tour) so I asked my Dr if I could have the port placed with NO sedation, just the local numbing up med, so I wouldn't be groggy all afternoon. He gave his OK to try it. It was done in the Intervention Radiology department of the hospital, my nurse sat right beside me with the versed and the fentanyl bottles in her hand and told me if I changed my mind she'd get them drawn up and shot in my IV in a flash. I had all the sterile drapes over my head but my head was turned to the side and I could see her with my one eye and she kept asking if I was OK. I could feel the tugging and the pressure of him working, just like you do at the dentist, but didn't need to use the sedation. Got back to my room, ate lunch and was on my way.
Lew drove me to the reunion, picked me up a couple hours later and a friend picked me up and we drove around and looked at the beautiful yards on display in the garden tour.
I was told I could shower after 24 hours but to tape plastic wrap over my port incisions to keep it dry for a couple days. The site was tender enough that I couldn't lay on that side for a week, and it went through the bruised look, but now it's fine.
Something to consider, drawing blood from the port for lab tests increases the chance of clots forming in the port and causing problems. There are meds and things they can try to dissolve the clots but they don't always work and sometimes they have to remove the port and put in a new one. If you have veins that the lab techs can get into for drawing blood you might want to consider using your arm for lab draws and saving the port for the chemo. That's what I'm doing, especially since I'm only having 4 rounds of chemo. I'm only having lab draws done by the infusion center lab techs cuz they're soooo good at it.
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Dancingdiva, don't freek out ! It's a simple enough procedure for them and mine was sedition and local because was in the same dy of my BMX . It's gonna be ok and u will be glad you did.
This is my pict I have a tatto on the port site so almost anyone can see it
BTW this was me trying a wig I like it but is 400 do I'm letting it go , I don't think I can use because here is to hot for wigs:) maybe I buy one to use when I go out.
My tattoo I got right after I took out my first port , it is a lotus flower ! They did a good job placing these new port right on the same spot that I had before.
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Coyote - your hair looks great! RamblingRose - you too! You guys are so brave to go at it before it's all gone! I'm on day 10 and expecting mine to go anytime now.
MommyMel I'm so sorry you're going through this twice! Once in a lifetime - or zero - should be the limit. I didn't realize you were in Florida, too. Dang hot to be wearing wigs, but I think I will want one just to feel "normal."
Port - I didn't want one but my onc insisted. He says it should stay in the whole three years that I'm at highest risk with the TN. That's the bad part. The port is no problem at all, but I thought there would be access to it. Instead they stick a needle thru the skin. I did it without the Emla cream the first time and had tears running down my face. I heard on this forum about the Emla, just used it Wednesday and it was amazing! I didn't feel a thing. GET THE CREAM! I watched a YouTube video on how to apply it. Use a generous amount. I just have one 1.5" scar, not two. I don't even notice the port anymore but did buy a lot of collared shirts.
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I had Lew buzz me down
to the scalp this morning, today it's 86 out there so I had to cover up
and make sure I didn't sunburn my head when I went out and worked in
the yard.My free synthetic wig from the cancer society looks close to my previous
style but bangs need to be trimmed a bit, I'll have my hair dresser do
that this week when she comes back from the lake.0 -
mommy mel, I thought that was ur hair. Great wig and I love the tattoo idea.
I have been shedding big time the past days. I thought I had posted this last night but I guess I was too sleepy. I' m going to see how many days it takes to lose so much hair that I can see scalp in ponytail. I had vary little hair due to alopecia but with all the loss I still don't see scalp at the bottom. Wig will be coming out soon. It's gonna be hot but I will have my fluffy raven hair flowing in the wind.
Walle, u felt pain without Emla. Rats.
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I missed so much while I was on vacation! I had a fabulous time with family and especially with my gbabies. My hair is definitely starting to fall out now and when I pluck it out, it comes out in clumps. This is day 18 and I've felt great although my tummy is still a little caddywhompus. I guess in the next few days I'll have to shave my cute little fohawk but it was fun while it lasted. Glad to see everyone is doing well for the most part.
I'm getting ready to go to the grocery store and buy stuff to make juice. I normally juice and drink a green smoothie everyday (it helps with my fibromyalgia and fatigue) but haven't been able to while on vacation. I want to get as much nutrients into my body before #2 on Wednesday. I also put supergreen powder into my smoothies along with chia seeds.
I'm going to enjoy the next few days and hope everyone else does too!
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Well, here's my post shaved photo. Actually I like it better than the short hair photo, maybe cuz it's slightly out of focus and the wrinkles aren't as evident!
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Puffin,
You are rocking that look!! (hope I'm not too old to use that expression.)
Shirley
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Here's some yarn I received from Dixie1.
Thanks Dixie! Shirley
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DancingDiva - no I felt PAIN without the Emla. And the nurse didn't even recommend it for next time - I found it on these boards! Anyhow, I felt nothing with the Emla, so please get it.
I'm on Day 11 and waiting for my hair to start going. It won't be long: last night I was plucking my eyebrows and they came out WAY too easy! Definitely hair follicles are loosening up!
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Feeling blech today. I did much better yesterday. Funny, I thought I'd feel better by now. My 7 yr old is acting out and its very hard to get through the day when you feel like you have a bad flu bug. I know I'm feeling sorry for myself, tomorrow is another day. And hopefully, a better day. Hugs to any of you who need one.
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Just a quick note to tell you that I am still here and thinking of you all. I'm doing okay
, waiting for the se's to lighten up. Hope everyone is fine...I'll catch up tomorrow.0 -
Me too.
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Maidentiredofwaiting, Mags and Coyote - I'm so sorry to hear that you aren't feeling great. I hope and pray that tomorrow is a better day for you.
Last night I slept for 16 hours. My left lymph node is really swollen so I called my oncologist office and a really nice doc called me back. I was on my way to the urgent care to get a WBC/RBC (haven't gotten one in 3 weeks) to see what's up - but he said that 3 weeks post TC, that WBC/RBC wouldn't concern him. I must have a sinus infection or something like that. Starting rads tomorrow. Maybe I'll set a record and sleep 24 hours...LOL.
You all seriously rock.
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Hi all,
I just joined this site and hope to hear from you!
I just started my first chemo of AC 9 days ago and my first 2 days were good and then I got really sick for 2.5 days: cramps, nausea, cold, hot chills, headaches, diarrhea, bloatedness that won't go away....it was pretty horrible.
Do any of you know if you had the same reoccurence of the same side effects?
My oncologist said that now we know what I react to, he can have different meds to adjust accordingly. Let's just say I am already fearful of my next round of chemo next Saturday the 16th.
I know we have to keep strong and positive...but after feeling that sick feeling for the 2.5 days...it's tough!!
I have AC every 3 weeks for 12 weeks, then I start 12 weeks - weekly of Taxol and Herceptin then 5 weeks of radiation + 5 years of hormone therapy.
My diagnosis and treatment to date: HER2 - 3 positives
Had right mastectomy multifocal tumour, with removal of 21 lymph nodes (5 of which were cancer). Immediate reconstruction wtih TRAM flap procedure. Surgery was 52 days ago and still managing the healing of my wounds.
I wish all of you the very best for your chemo treatments. Chin up and we can do this!!
Love and light
J
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jujubes - I am also triple positive, but am on a different chemo protocol. I am take Taxotere, Carboplatin and Herceptin every 3 weeks for 18 weeks (6x) and then continuing Herceptin for a full year every 3 weeks. Will also be on tamoxifen for 5 yrs after chemo. It's a very common chemo protocol for triple positive cancer...perhaps they can change your chemo....I don't know.
So far my s/e's haven't been bad...some stomach cramping, gas and constipation that first week after chemo...then back to normal. I hope your s/e get better and that you can manage them in the future.
I'm sure there is someone on this discussion who is on your chemo..
Feel better!
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I just prayed for all of you having bad SE's. My second treatment is in 2 days and I'm trying to do as much stuff as I can around the house before SE's hit me. At least now I know what to expect.
I'll be glad the day I poop normal! 😝 I'm still having the big D mainly after I eat dinner and it's getting old!
I love seeing all the pictures and everyone is beautiful. My hair started falling out in clumps yesterday so I cut the fohawk off. I went out to dinner with a bandana on my head and felt like a rock star 😉
Here's my selfie
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maidentired: I can't imagine dealing with a 7 year old the way I felt, kudos for you. I didn't feel better until day 6
juju: My 1st AC chemo was Jul 17 and my next round is Thurs, I'm going to make a concise list of SE to be ready for my Dr appt prior to the chemo
pinkninja: my 2nd tx is this week and I'm doing the same thing, have my list of prioritized tasks to get done, this time going to have more food made up ahead for Lew, I had stocked up on pudding and yogurt and hard boiled eggs for me and not enuf for him to eat, your short haircut looks nice on you and so will the bald look
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