Starting chemo July 2014
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I know this is off topic, but I was just dx'd 8/21 and have been in a whirlwind of Dr. appointments and decisions. My Onco said if it were her, she would do chemo with Perjeta prior to surgery. Just wondering how it was going for you? How many did they recommend before surgery? Anything else you could share would be amazing. I'm terrified after finding out about HER+++ (ER+ 93%, PR- 0%).
Thanks, Sam
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BREATHE, this is a marathon not a sprint. Get second opinions, from breast surgeon (BS), Radiation Oncologist (RO) onco (MO) Have they run an oncotype yet? I thought being HER2+ meant chemo, so didn't fight for it, because they said I didn't need it, but the Johns Hopkins website says it is helpful in making treatment options and chemo not necessarily required if HER2, mind you, I have chemo brain, so may have read it wrong, as I saw that after I was committed to my treatment. Have they run BRACA? How old are you? What size is it? And when you say IDC you mean INVASIVE not In-Situ, correct.
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JoeysMommy - love the doorag. I have a couple, but like the Michaels tip. I need more. Florida is burning up right now and wigs are a no go.
PinkNinja - I'm on CT and have gained about 10lbs. I know it's not something I need to worry about, yet I worry about it! I'm sure it will come right off when this heat is gone and I can exercise like normal again. My wonderful neighbor's been walking my dog, and I haven't.
JennLiza - I also got my period after my first round of chemo, but hoping it doesnt come back this time. It was one of the worst ever, too.
Mags - you brought tears to my eyes with your story. So sweet, and timely for both of you. I'm glad you've formed a relationship.
Coyote - thanks for the purple bracelet. It was even prettier than the pic. It's a reminder everyday of this group and how in touch we are with each other. I'll think of you often.
For the first time I had good blood work numbers! Yay! Sept. 3 is the third of my 4 treatments so I'm halfway along. My doc said if I didn't have chemo I had a 77% chance of not having cancer again. With chemo I'm at 86%, so I push through it to raise the percentage chances. Anything I can do to drive this illness away is a positive.
Love to all of you.
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I think I told you all that I had succumbed to hand/foot syndrome. My onco says it's pretty common for all of us chemo junkies. It feels like I've tried walking on hot coals. Here is what it looks like:
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The other side:
Sorry these pics are so large.......
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Yowch, that looks painful! Is there anything you can do for it?
Had round 3 today, and I meant to get a popsicle for during the A push, but forgot to get one on the way in. I'm starting to feel the beginnings of some mouth sores, but nothing has really lasted more than a day or so yet. It's also hot here, so it would have been nice. Does everyone else have someone accompanying them to chemo? I get dropped off and picked up, but haven't asked anyone to commit to staying the whole 3 hours. One one hand I just want to watch Netflix and try to ignore the IV, but then it would also be nice to have someone to send for popsicles...From a few pages back, but Mags, that is an awesome adoption story. I'm so glad you guys are able to be in each other's lives.
I can't imagine teaching at this point. My side effects haven't even been bad, but I'm just so out of it. If my kid weren't still napping in the middle of the day I don't think I could make it.
I've been to a couple of European cities that I loved, but we did our honeymoon in the Greek islands, and they were my favorite places ever. Every time I look at the pictures I almost want to cry because it was so long ago and will be so long before we can do a trip like that again.
Sigh...
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welcome Eileen, glad you found us. I'm not icing my hands and feet and am having no problems, in fact my fingernails are still growing and I need to keep filing them down; my onc says to drink at least 64 ounces of noncaffeine beverages a day and even more the day of chemo and the day after to really flush it out of my system
I had chemo #3 today, no reaction! They increased my pre benadryl dose and ran the taxotere over 3 hours, 2 of which I slept. Get the neulasta shot tomorrow. Legs seem weaker sooner this time
Is anyone using essential oils? They're popular with my local support group and I bought the starter kit and a diffuser/mister. Different scents are used for different problems, can be put on topically or several drops with distilled water in the diffuser. I used the Lavendar and Peace&Calm combo in the mister in the bedroom last night, typically an insomnia night while on the steroids. I went to bed at 10:30, woke at 12:30, did some yoga breathing while listening to the poofing of the mister and went back to sleep, woke at 3:30 and repeated the procedure and slept until 6. Not bad, will try it again tonight which will be a big test considering I had a whole IV bag of dexamethasone.
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Sam,
I'm Her2+ and my tumor is 4.50 cm so I am doing neoadjuvent therapy (chemo first then surgery then radiation if necessary). I'm on TCHP (taxotere, Carboplatin, Herceptin and Perjeta). It was definitely a whirlwind and everything moves so fast. I did a little research after I met with my breast specialist but didn't go crazy reading everything. These forums help more than anything cause we are sharing our experiences.
Blown away,
Omg, your feet look so painful, sorry you have to go thru that.
I'm day 1 after infusion and having the horrible heartburn and yucky mouth again, bleh
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Re: Bracelet TY's. It really was my pleasure. I enjoyed every bead.Re: Molecular fatigue. I think my friend was correct. I have been guzzling PowerAde to raise my electrolytes. My inner quivering has subsided. Maybe I said this already, but I was told yesterday that diabetics (which I am) are susceptible to low electrolytes.
Re: Hot wigs. On my last infusion day I picked up a copy of the American Cancer Society TLC catalog of hats and wigs. On page # 29 they show cool comfort Wig/Cap Liners, that according to the listing "wicks away moisture to keep you cool". Anyone tried them?
Re: Getting together. If we really-really do that, I would offer up Las Vegas as a destination - even though I live close by and it wouldn't be too glamorous for me - it can be fun. Easy to get to for everyone. It can be inexpensive. There are many activities that don't include gambling - but that is here if someone is inclined. I would be willing to make some inquiries.
Blownaway: Good Grief! What's next! I had a sore toe last night that concerned me but determined that I did a bad toe nail trim. What can you do about your foot?
Boxofrockstar: Actually, most of the chemo patients in the infusion room have someone with them some of the time. My hubby is there almost all of the time unless he has an errand to run. The nurses take good care of him. They say that caretakers need it too. He is one of those guys that naturally gets that kind of attention. He's gently funny, kind, caring and courteous... he's a quintessential "Southern Gentleman."
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Blownaway -- awful pix! hope they feel better than they look.
Pinkninja -- your tumor WAS 4.5 cm -- not anymore!
Sam, I'm HER+, too, and will be doing Herceptin for a year.
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wow ladies,
So much to catch up on! I don't know where to start..
So...blown away, oh ugh. I hadn't even HEARD of that one. Hopefully it goes away soon!
Mags, I was also really touched by your adoption story. Thank you for sharing that with us.
Mumford - your Bali cottage made me laugh (dream?) outloud :-)
Coyote - I am totally in for Las Vegas ;-) or Tahoe...
Box - my husband comes with, mostly because I need a cold cap helper. Funnily enough, I think the best thing about the caps hasn't been that I have hair (altho that is admittedly nice and not something I am taking for granted given shedding..) but that it gives him one thing he can do for me thru all this...he feels generally really helpless, which is a huge stress (actually for both of us).
And finally, new ladies, welcome!
No, not really finally. Finally, on 'unpalatable' side effects - we've covered the big D and the big C...anyone else having issues round, ahem, the other side? Dryness and itching is driving me nuts...coconut oil helpful, but definitely not solving the problem...gah. :-(
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Mags – love your story. I am so glad the both of you were able to build a relationship and touch each others lives in a positive way!
Blownaway – Ouch -- I hadn’t heard of the hand foot syndrome until you posted it. What can be done for this SE?
Puffin – I haven’t heard of the essential oils. But with my serious insomnia I need something. Last night I took Benadryl to help me sleep and still woke up. I didn’t take Tylenol PM as I was told to stay away from the PM if I took Norco for pain, which I did last night and over the last week due to port placement. I would love to know how it works after the dexa.
Coyote – I love Las Vegas. We take a trip every 2 years with the family so much to do and so easy to get to. Tahoe is beautiful also.
BoxofRockStar – most of the patients have someone in the room with them. So far for each infusion I have been by myself due to friends work schedules. I elected for a shared room for the 2nd infusion and had a good conversation with the ladies and their visitors. I actually told me husband that it is would be good for him to go with me to see other that are going through and talk to other caretakers.1stinfusion I was in a private room as I wanted to see what the experience was going to be like.
Raindew – I need suggestion on the nether lands also. I am dry and itchy and nothing is helping right now. Any suggestions from anyone!
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Munford , love the idea of a Bali cottage in Tahoe kkkkk
Since is my favorite place Tahoe gets my vote. And is not that expensive. Last time I rented a huge house with my family forChristmas and was beautiful and the price was not bad.,,
Mags your story is really touching ... Glad you found each other !
Side effects fatigue and watery eyes not bad for now .,,
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Well, ladies, I just stopped in to say good night and I see we have another newbie in the thread. Welcome, Sam. We have other HER+ gals! as you have already seen. They will share their experiences with the treatment.
I love telling the story of my son & I because it truly is a story of faith. I was able to relinquish him because I knew there was a God who would take care of him – even though I didn't know God then. Over the years I became nearly obsessed with finding my son, to the point of spending night after night scouring the internet adoption forums for a trace. Finally, in 2002, I gave it all up and said, "If it's God's will, he will find me." And he did. When he was here in May for a visit we sat in the den for three days just chatting and enjoying each other's company. And when he left he gave me the longest hug, like he would take the cancer from me if he could. So proud of him.
Watery eyes, fuzzy vision still. Nini angels.
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thanks to the steroids, I woke up at 5am again! No complaints though as I love having quiet times with God and reading my Bible.
I don't have anyone come with me during infusions because it's all one big room and there are a lot of really sick people there. It's generally quiet. I love talking to people and hearing their stories so that's one reason I don't bring anyone. I feel like I can offer them hope and at the least pray for them.
I usually take my crochet stuff, book and iPad so I can watch Netflix or Hulu.
I've made a ton of chemo caps that I'm putting in a basket and taking with me next infusion to give away.
I just realized my follow up appt and ultrasound is next Tuesday not in 2 weeks! Chemo brain fart! So excited to see how much my tumor has shrunk
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wow, gone for 2 days and soooo many posts.
Kmntwins- I'm in TCH too...no perjeta and I get Neulasta slightly more that 24 hours later...that I had to push for solely for scheduling reasons. They wanted to give it to me exactly 24 hours after chemo. I can't miss work just to run uptown for a shot that I can get at the end of the day.
Pinkninja- I got my period on TCH...no perjeta. I had it for my chemo this week, ugh!
So 3rd treatment was this past wed...and went through my Port! Looks like my Port is NOT infected. They actually don't know what was infected. They have taken cultures of the blood from the port and the clear yellow liquid that squirt out from the port and nothing has grown. They kept me the hospital for 2 days and now am in Keflex and doxycycline for 10 days. The redness and swelling is down...so looks like I get to keep my port...woo hoo!!!! They think it could be my latex allergy from the tape they put over it when getting chemo.
My 43rd bday is Sunday....what a way to ring it in!!! The weekend post chemo...we were going to celebrate last week, but being admitted to the hospital crushed those plans. Going to a friends house in the hamptons and friends from Toronto and DC are flying in....we are all close friends. Although I may not be life of the party, I felt it would be good to go...I can lay around a pool just as I could my bedroom.
Nausea came on way quicker this round...think I actually have to take zofran to go to work today
TGIF and happy Labor Day Weekend!!!
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SamIam - I was horrified to find out I was triple positive till I went to 2 Onc's in NYC. Different hospitals...and both said nearly the exact thing...it used to be bad to get...but now HER2 is very treatable and more drugs are coming to the market to fight it. They both said with having ER+ and HER2+ is actually good now...lots of drugs to fight it!
As for Perjeta that is usually given pre-surgery to reduce the size the tumor. How big is your tumor? Mine was too small for Perjeta , but I did ask for it in adjuvant therapy but said insurance won't pay for it. If your tumor is greater than 2cm I would get it!!!
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jennliza: congrats on keeping port!
ladyb: about essential oils, I'm new to this but several in my local support group are using so thought I'd give it a try. web site is youngliving.com. The oils come in 15ml bottles of concentrated aromatic liquids extracted from shrubs, flowers, roots, seeds, you smell them directly from the bottle, apply a couple drops to skin, put with distilled water in a small electric mister. Different aromas are used for different problems: tension, to uplift spirits, pain relief, insomnia - some to help fall asleep, some to help keep asleep, fatigue. etc.
I mixed lavender and peace&calming in my mister the first night, then was told peace&calming was more to help you fall asleep, my problem is more waking up about 1:30 or 2, so one of the gals suggested I use lavender with Valor instead. I woke up twice during the night (once because of noisy college students coming home next to my open window), both times I used my deep Yoga breathing and focused on the rhythmic sound of the mister and was able to get back to sleep until 4:50, which I was happy with on a steroid night. There is also a Lemon Dropper facebook page, by invitation only, where members post how they are using their oils that can be searched, or you can post questions about what oil to use for what.
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PinkNinja,
That's a great idea about the chemo caps! I think I'll try to drop off some too.
Good luck next week. I hope the tumor has shrunk to nothing!
Must be something in the air; I couldn't sleep last night either.
Mags, you hat got mailed yesterday. Sorry it to me so long.
Shirley
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Oh Shirley, how sweet of you! I will wear it proudly!
Wish I could stay and chat, but my eyes are absolutely awful today. All weepy and full of crud. Ended up takin a pain pill around 1am to get some sleep.
I will check back later. Have an awesome SE-free day, July warriors.
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Jennliza -- good news about your port!
Hope some Zzzzs are on the way for ladies who aren't sleeping.
I'm having a totally unproductive day -- school called and said that one of my kids had an ear infection. So, I brought him home, and....he's not behaving any differently than normal. (My son is semi-verbal.)
Drowning in the generosity of others -- a very kind coworker's wife set up an online network to provide assistance to me, and some in my office have donated nonperishables (e.g., bottled water, stuff for my kids' lunch boxes). Now, I have tons of water bottles! The problem? Like many of you, I am SO SICK of drinking water! I am increasingly drinking lite lemonade to get my fluids, and feel guilty every time I see this mountain of water. If I don't make much progress through the pile, I may donate them to the Red Cross or something. Hope that's kind-of kosher.....
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OK - trying not to flip out, but looked at my metabolic panel results on my docs website just now. Three tests for liver function and all three were crazy elevated. I put a call into the docs office for someone to call me back. I'm trying to stay calm...trying trying. I won't call my husband bc he's at work, I don't have enough info and he's had enough bad news right now. Please, please let it be nothing.
Mumford - didn't you say this happened to you? What tests did they run at what did your doc say?
Breathing....
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Wallegator - when were the bloodtests taken....how many days are you past chemo treatment. Ive been told that 7-10 days post chemo is worst for blood tests....but you usually rebound by next treatment.
Sending positive vibes your way!!!
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Elainethere,
Since you have so many bottles of water and can't stand the taste, you could get those little bottles that squirt juice or tea or lemonade and you put a few drops in the bottle and voila, yummy ness. There are so many choices and I've actually starting carrying one in my purse for when I go to restaurants. I used to love water with lemon and cucumbers and I can't even drink it now.
I'm still having the awful heartburn and have tried everything. My eyes are so runny too and it's driving me nuts! 😝
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Jennliza - they were taken one week after my second chemo so maybe you're right. I hope so! My B12 was through the roof!
I also did speak to the doctor's office, a nurse, and she even gave me a call back to reassure me that while they were abnormal the dr had seen them and signed off on them. He wasn't overly worried, just figured it was the chemo affecting me. All I could think about was if the cancer comes back (and I know it's not likely now in the middle of chemo) that it goes to the liver, brain and lungs. LIVER! But I'm going to try to enjoy the holiday weekend and I see doc again on Wed.
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pinkninja -- Thanks for the tip! You might have mentioned those little bottles earlier while I could still tolerate the water. Ugh, about the heartburn! How annoying.
WalleGator -- Hopefully, if something were really wrong, MO would have some course of action in mind. I've had so much bad news since June, I don't even look at my bloodwork results very carefully. (Most are within normal range.) I figure MO wouldn't let me continue with chemo if my numbers were awful. Hope you find some peace of mind and can relax a bit this weekend.
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Water is a tough sell. I bounce around with things trying to make it drinkable. It's gotta be bottled - (distilled is good because it truly has no flavor.) Then I add something - frequently plain lemon juice. Still staying home - close to the ladies room. I'm trying to add food - Now I have to add the Pepcid back in. Other than the normal stuff that we chemo babes experience on day 9, no problems.
Puffin: I love oils. I'm not gotten seriously into the mixing, but we will have 1000 lavender plants on the farm soon. We are very excited about it. We are hoping to eventually have the 5 acres next to my studio in lavender. At 2500 to 400o plants an acre, that will add up! A lavender field next to a pomegranate orchard. Beautiful, relaxing and healthy! Next summer we will be distilling lavender oil. We had our first lavender crop and picking this summer, but the oil still wasn't built yet. This reminds me that I need to get out to the herb garden and cut and bundle herbs for drying tomorrow.
I'm going to spray the house with lavender and have beautiful dreams tonight!
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Hi Everyone - thought I'd check in now that I've finished my fourth and final AC tx (12 weekly Taxol is next). The fatigue this round has been ridiculous. I can't seem to stay awake for long.
I was wondering if anyone else has experienced phlebitis. I don't have a port, and each location that I've been stuck in my hand for my IV has resulted in a very sore area "upstream" in my veins, even some bruising. I've been using a heating pad several times daily as my nurse recommended, but it hasn't helped much. My nurse is getting concerned that I may run out of good veins (can only use right side because of lymph node removal on left), as juicy as they are, if I am facing 12 more needle sticks for Taxol. I'm really want to avoid a port, and I'm hoping that the issue was caused by the harshness of the Adrimycin and the Taxol won't affect my veins as much. Anyone have the same issue?
Hope everyone has a restful weekend.
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kpcmacphill -- Congrats on finishing with AC! I hope to be in the same boat on Wednesday. I will also then be doing 12 weeks of Taxol. Sorry, can't help you with the phlebitis. MO won't do AC through veins; she insisted that I get a port. Not sure why you want to avoid a port; I like the convenience of mine, and it hasn't given me any problems. But, I have heard that Taxol is generally more tolerated than AC, so maybe it doesn't have the same impact on veins (?).
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