Chemo starting October 2017
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I’m two and a half weeks PFC. Still afternoon napping but back to a busy schedule. Fatigue is from interrupted sleep because of hot flashes at night. My skin is very very dry and sensitive so I second the sunscreen
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Sara, I was 6 months past hot flashes when I got BC and now I'm also waking up every night, just drenched in sweat. I don't know what to attribute it to since my BC is not hormone based. I wonder if it's a SE of chemo, though we are on 2 different ones. I've put the heat down to 66F (18.9C) at night, which is the lowest my family can tolerate, because I've found that the colder the room is, the better I sleep. But I'm still experiencing hot flashes that may it impossible to sleep through the night. So odd.
After I'm done with my surgery, I'm going to go back on melatonin and see if that helps. I don't think that it helped that I was in the habit of waking up 2 to 3x per night to pee, thanks to the amount of water I was drinking on chemo, and my body has now adjusted to that new normal. Not a good trend.
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Agatha - I had wire localization and the nuclear dye injection. Neither was painful really. She said I would feel "like a bee sting", but I don't know that I even felt that much. They go in on the edge of the nipple I believe for the dye injection (not that I could see anything, but I think I had a mark there later). It really wasn't bad at all. The only awkward thing was that they did a mammogram afterwards to make sure the wire was placed correctly. The tech was not very friendly. She didn't care that my dressing over the wire, etc. popped off, didn't talk to me, left me in the hall afterwards and didn't tell the girls in charge of me that I was done...she was the only sour person in my whole experience at the hospital. I would try not to stress about those too much. Even my sister-in-law said yesterday that the dye injection wasn't bad. She might have had the seed placement too since she had multiple tumors. I know they didn't do the wire on her.
Jennifer - How good to feel there is light at the end of the tunnel and that you are on the same page as your MO!
Geneva - I still have four taxols to go, so I may not be totally where the other girls are, but I think a vacation sounds heavenly. I would definitely make sure to pick somewhere though where I don't have to do a huge amount of walking and definitely buy a big hat and lots of sunscreen if you are at a warm place! I know right now I get tired still pretty easy. Yesterday I showered, cleaned the closet and sink area, sorted laundry, and started a new load and I was poooooooped! I had to sit down for an hour and relax. LOL So, I would focus on a place where you can mostly walk yourself to the pool or beach and sit while your kiddos play. But...that's just me. :-)
My SIL surgery went very well. It lasted 6-7 hours. She is awfully chipper this morning which I am going to attribute to drugs. LOL They took 10-20 lymph nodes on the right side where all the tumors were and only one node on the left. They were able to spare more skin than they thought they were going to be able to and they got the expanders in. They had to put them over the muscle - I'm not versed enough to know what that means. But I'm going to visit her in just a little bit.
I see the OT today, the NP tomorrow and have a treatment, and the RO on Thursday. Busy couple of days! I hope I make it through the week!! :-) I wanted to go shopping at a big sale on Thursday. We'll see if I make it to that.
I am really glad that my emotions came back up out of the gutter. Sat. was a baaad day. But I felt ok yesterday and today, so that's good. :-)
I am off to see my SIL. Have a good day everyone!
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Petey, so glad you're feeling better. I've been on a rollercoaster of emotions since I was DXed so I completely understand.
Still haven't heard about my skin biopsy. I cannot believe that they make us wait over a week to get results back. I read on the Feb surgery threat that it took someone 3 weeks to get their pathology report after their BC surgery. That's nuts!
Getting packed up for my BMX surgery tomorrow. Got my lozenges, sports bra, phone charger, etc all packed. Wish me luck!
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GOOD LUCK, LISA!!!!!
All of will be with you in spirit tomorrow.
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Thoughts are with Lisa today as she has surgery. Hiker, I hope you are resting comfortably at home.
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Thoughts are with Lisa today as she has surgery. Hiker, I hope you are resting comfortably at home.
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Lisa - Hope things went well for you today!
Agatha - How are you doing?
Guess what girls?!!! I'M DONE WITH CHEMO!! My neuropathy is bad enough that they felt it was good to stop early. Apparently, there are studies that show that if you complete 80-85% of the treatment (including AC) that it is as effective as completing the whole 100%. And, since I have radiation and tamoxifen still coming to me as treatments, they are ok with stopping. So I guess I am too! LOL
I wasn't prepared for it to be my last, but it was. I'll have to go back and give the girls some flowers later. They sang to me, gave me a completion certificate, and a little pin that says, "Shine On" with a quote from Maya Angelou. "Nothing can dim the light that shines from within." I got teary.
I meet with the RO tomorrow, so I'll have to read the radiation threads a bit, but I'm not leaving you my girls...not at all! :-)
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YAY, Petey! Congratulations!! I think it's great that you have less chance for the neuropathy worsening now. Good luck with the RO tomorrow.
I'm okay. I've been taking a heart medication to bring my heart rate down and it's working. I'm a little worried since I met with a hematologist this week about my elevated platelet levels. It has implications for my surgeries but luckily she and my BS and anesthesiologist agree that I'll be fine having my lumpectomy on Monday. Not sure yet about the longer plastic surgery that follows later in the month. The troubling part is that I will probably need to take a drug that is a form of chemo taken orally to stop the over-production of platelets. My lab tests won't be back for two weeks so I'm in a holding pattern about that. I'm having a little of a "two steps forward and one step back" feeling right now.
I'm really in the mood to eat pizza and watch trashy TV tonight so that's what I'm gonna do!
Still thinking of Hiker and Lisa -- hope they are both comfy and healing nicely.
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Congrats Petey,
Feels great to be done with Chemo - it was still a long haul.
I had my last chemo last week and I am just now experiencing neurophy in my hands and feet this week for the first time. Relatively mild so hoping its temporary.
I'm interested to hear if yours improves now that you're not getting chemo.
My thoughts are with Hiker and Lisa. Hope they are resting comfortably after their surgeries
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Petey- congrats on finishing chemo! Such a good feeling isn't it?!!! It's this journey that shows all of us not only ho vulnerable we are but how strong. Emotionally I've been up and down as this diagnosis has totally changed my life (as it has for most everyone else) and it's been a daily struggle dealing with that reality. But I pick myself up and I keep on keeping on ... as my dad used to say. Hope everyone here continues to keep on keeeping on too!
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Congratulations on finishing chemo Petey! Hope the neurophy gets better now. Hoping all is well with Hiker and Lisa. So nice to hear we are all at the end. 5 more days for me!
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Good morning, ladies! I'm in the hospital recovering from my BMX, sentinel node biopsy and immediate reconstruction (direct to implants). They used an epidural, so that I am in absolutely no pain and was able to sleep all night in between checks. I've taken short walks every 2 hrs as advised.
They put in 2 drains, one on each side.
The BS said that it'll take a week to get biopsy results back, though she did tell my husband that she had a hard time locating my nodes because they were so small, which is a good indication that there was no cancer in them.
Yesterday as I was in recovery the dermatologist called and the mole on my nether regions....was just a mole. What a relief!
And my BIL's scan was clean. Woot! The treatment for his HPV driven tonsillar cancer won't be easy (7 weeks of radiation plus chemo) but he has a 90% chance of making it.
So really good week overall!
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For those who are still waiting for surgery, here are the items I used:
Chap stick.
Lozenges
Phone
Phone charger
iPad
Pen
Safety pins for drains.
Tooth brush and toothpaste
Facial wipes
Moisturizer
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Hi, Lisa. Great to hear from you. I'm glad you didn't feel any pain and you were able to sleep that night.
Also great news about the mole.
Keep healing well!
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Thanks, Agatha. i'm home recovering now. Glad to be out of the hospital! Can't wait for the swelling to go down so that I can take my shower tomorrow and see how the new boobs look.
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Glad to hear recovery is going well Lisa!! Good news about the mole and the BIL!
Agatha - Pizza and trashy tv sounds awesome to me!!
Simbobby - I will keep you updated.
The meeting with RO yesterday was interesting. He is an interesting duck. But he really knows his research. The only thing he was a little torn on was if he should do rads to my Super Clavicle area. He was leaning towards no, as was his son who is also a radiology oncologist. The risk of side effects for that are greater than the rewards he thinks. Especially since I only had 1 of 4 nodes with micrometastasis. The reoccurrence rate for that area is only between 3-6% to begin with. Doing rads there might bring it down to 1.5%. So they both were leaning towards not doing it. He was really laid back towards lots of other things - like deodorant saying that wearing aluminum or zinc deodorant causing problems with rads is just "oncolore" and is a myth. He also said there is a new study from Harvard saying that many of the things they tell you to avoid for lymphedema don't actually affect it. But like I said, he backs it all up with research. And solid research too, studies where the participant numbers are huge and the results have clear links. I also now know the entire history of his family - where & how he and his wife met, where his son & wife met, his other son is a bachelor...etc. etc. And he went through the history of the treatment of breast cancer leading up to why lumpectomy is better for certain groups of women, and a lesson on the physics of radiation. We talked about my actual rads for maybe 30 min. of the two hour meeting. It was a little bizarre.
I don't know if I'd have time to get a second opinion, but maybe I should...I don't know. I am supposed to have my set up appointment on the 15th and start on the 19th. That's not a lot of time to squeeze in another appointment. I suppose I can call though. We'll see.
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Lisa - I hope your doing well today with no pain and new foob's (that word makes me laugh!). Thank you for any tips, I need to start to prepare for my surgery next month. And yeah for all the good news!
Right now it's getting through chemo. I am getting more and more fatigued with each round. With the first few Taxol's I was ok for a few days and only had 2-3 days of fatigue once I wasn't taking steroids. Now it's starting on the evening of infusion and lasting a good 7-10 days before I feel somewhat energetic again. Only one more infusion to go!
Congrats Petey on your last Chemo!
Thinking of Joyseeker/Sara too and hoping rads are going as well as possible for you!
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Day 3 post surgery and still have tons of soreness, especially where they put the new implants. I normally can wean myself off pain meds early, but I don't know if that's going to happen.
For anyone who still has a mastectomy coming up, my advice would be to practice sitting up in bed and from the recliner without using your arms. The stronger your abs are, the better off you'll be.
Does anyone have a list of exercises for post-mastectomy? My BS didn't give me any, but I'd sure like to start building back up my arm muscles without hurting anything.
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Hello everyone and I have appreciated all the well wishes and concerns. Had surgery on Monday wth no complications or delays. Nothing reported by the surgeons as being abnormal. Everyone was happy. They got me into a room quickly for the night. I had no appetite, but tried to eat on some crackers to prevent nausea from the meds. I like my meds. They were great but to not put me in a place where I can not function. (worst side efffect is trying to type). The sleeping on my back has not been as bad as I feared. Having plenty of pillows propped up of different sizes does the trick. I do have come intense pain in the center of my rib cage and running across when my boobs would sit, sitting there like heavy iron bars. Pain meda help relieve this some. No other great pain, must minor stuff, like when you stretch and something plus...Emptying the drains has been easy too/and recording. I was told that I could take a shower also, but my sister and I looked at the bandage and there are just two square bandages over each sight making it appear there ie nothing further below that??? I am guessing maybe some type of mesh stuff, but I am not ready to mess with this stuff Bathing around the boob area wiii work until DR visit on Tues. My Sis has been changing the bandages around the drains. Love having my family to be here a skwirm and laugh with me, hehehehe
I did ask my PS about my final surgery, the DIEP when I get a real body back...the one I am excitied about,,,he said 3 months from 2/26/2018
I have been keeping up with everyones finishing and excitemenet ...may not be posting as much... meds really screw with my grammer.
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Here are a couple I had pinned before I knew what surgery I was going to have.
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Man on man. My fingers are worse today and so are my toes and feet. It's a good thing we stopped. I also developed a rash on my arms. It's been building actually, looking more like eczema than anything. But Thursday (a day after Taxol), I got angry red streaks on the top of both arms. Right up next to my arm pit on my bicep. It was sort of darker and red going down my bicep, then my rashy/eczema part on my elbows, then my forearms have red dots down to my wrists and my hands were getting red. Yowza! So, they called in a zpack for me. Just what I need - more steroids! :-P Oh well, this arms stuff is crazy, so I hope it helps. The nurse said, "I think Taxol just really didn't agree with you." Ummm...understatement. LOL
I could tell last night that I was tanking when I was out with a friend for dinner. This morning, my hands/feet are worse, my arms are annoying, I'm starting to hurt, I have got the big D, and I was nauseous and had to take a zofran. BUT....I know I don't have to go through it again. That makes it a bit easier.
So for those still finishing....hang in there. It does make it a bit better when you can see the light at the end of the tunnel!!
Here's hoping everyone gets through the weekend ok!
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Thinking of all of you as you navigate your surgeries and end of chemo. Hang in there! Surgery girls lots of tea, Netflix and rest. Keep up on those pain meds. Those ending chemo be gentle with yourself. It seems to take a long time to feel better. I’m still struggling with that and having the patience needed to feel “normal”.
30 cm of snow over the last few days. Eeeeek! We have about 120 calves so hubby is busy. My life is a mix of naps, yoga and keeping track of my kiddos. Still very tired four weeks out. Here’s to sunny spring days, tulips and completing Rads by Easter 💜
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Hey, Lisa - Hang in there. Petey posted the exercises that I was going to send you. I'll take another look at my handout booklet and see if there are any others. Thanks for the tip about practicing getting up out of bed. I have realized I use my right (surgery) arm to really push myself out of bed. I may actually sleep with my head at the foot of the bed so my left arm would be the push-off arm (bed in a corner - can only get out on one side.... joy of city apartment living)
Hiker! Great to hear from you. I'm glad your sister is with you to help. Hope every day is better.
Petey - sorry your neuropathy is so bad. I'm hoping both of ours eases up with time. I may ask my MO for some gabepentin or something when I see her after my lumpectomy. Your RO sounds eccentric and kind. Some of my best doctors have been like that. Are you going for a second opinion?
joyseeker Sara - Good luck with rads. I must have missed a post with your start date. Have you already had your simulation? Have you actually started the daily sessions?
I had the radioactive seeds implanted yesterday, to mark off the abnormal area for my surgeon. It kinda sucked. The breast is compressed in the mammogram machine for about 20 minutes which was uncomfortable, even after they shot the lidocaine in the areas where the seeds would go. I asked if my breast could be numbed before even going in the machine, but no-go.
My surgery time is finally set for Monday's lumpectomy. I'm scheduled to have the nuclear dye injection at 6:30am and in the OR at 9:15. It's in 2 different buildings about 7 blocks apart which I think is weird. There's a shuttle van that takes you from the dye place to the surgery center. I'd rather they just knock me out and push my gurney down 1st Avenue, weaving through all the commuters on the sidewalk! I could have one of those clown horns to move people out of the way.
Have a good weekend everyone!
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Happy Weekend Ladies. Congratulations, Petey for being done with chemo. Hopefully you will start feeling better soon. Neuropathy in my fingers is still bad, can't feel much and have to use knives to open pop cans, etc.
Hiker and Lisa so glad to hear surgeries went well. Hang in there girls!
Sara and others good luck with radiation. Try to stay warm in all that snow.
Agatha, you are a hoot. I loved your comment about being pushed down 1st Ave. LOL Good luck with your surgery.
Jennifer522 hang in there you are almost done. Be kind to yourself and know it will take some time before you get your energy back.
Who are the Herception Ladies? I can't remember who is doing this along with me. I think chemo brain has caught up to me. How is it going. I am about to have my 3rd since chemo. I'm still tired and can't tell what SE are left over from chemo and which ones are Herception. Any comments?
Congratulations to all of us for enduring this mess. It's one of the hardest things I've had to do. It not over yet but I see a rainbow down the road, just wish I could capture that pot of gold along with it...LOL
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Thanks for the exercise links. I'm definitely going to try to move my arms more. I also need to walk more.
I think I'm going to send an email to my PS asking what stepdown OTC drugs I can substitute for the Oxy. I'm very sore, but not in excrutiating pain or anything, so I don't think I'll need the big guns past today. I especially hate that after taking one, I'm out like a light for an hour or 2. I've successfully extended the time between pills by 1.5 hours but would rather take something without codeine as soon as possible.
My drains are still capturing a lot of fluid, so I kind of doubt I'll be able to get them removed on Thursday because I have to be 3 consecutive days under 30mL total. I'm glad I only have 2 drains to deal with, but they are a minor PITA. I also have a major backache from laying down all the time.
I'm starting back on the Nioxin, and am happy with the growth so far. I still think it'll be 3 months before I'll walk out without a cap on, less if I can find someone to color it.
The upside to all this: my complexion is beautiful. I suffered from acne my whole life, but now it's peaches and cream. Of course, I also have a whole bunch of peach fuzz growing, too, so maybe it won't last,but I'm enjoying the no-makeup lifestyle. And I know that I'll enjoy the no bra lifestyle, too!
BTW, I looked at my new foobs and they are a mess right now. The scar across my chest where they removed the nipple is like something out of a Frankenstein novel, and the implants are mushed here and there. I'm hopeful that once the swelling goes down, I'll be happier with them! Right now they itch like a mother, and I'm already feeling phantom pains from my ghost nipples. Very, very strange.
2brandy, I think that the Herceptin ladies should all have HER+ in their profile. I'm TN so no targeted treatment is available yet for me.
Agatha, the Nuclear Medicine place was in a different building than where I had surgery, but at least it was on the same campus. I'd pay good money to see you transported down 1st avenue with a bullhorn. Good luck with your lumpectomy! I hope it's a smashing success.
HikerVa, I've showered twice since surgery. I removed the compression garment and gauze and the rest was covered in steri-strips and glue. I was really happy to get rid of that compression garment, though, and move on to a soft-cup bra. 5/26 will get here before you know it, and hopefully you'll be all healed up in time to enjoy the rest of the summer.
Petey, keep walking and moving around to try and help with the neuropathy. I walked 2 to 3 miles as often as I could after my chemo ended, and my neuropathy is nearly gone. I also played the air piano a lot to help with the hands.
Sara, You are in the home stretch!
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Congrats to Lisa and HikerVA on a successful surgery, Keep moving forward and treat yourself kindly.
Petey so glad your done with taxol. I still have tingles & numbness in my fingers and toes. Last taxol was 2/14. But not bad, some lifting on my big toes but none on my fingers. Keep massaging and moving them (like the air piano) pull the blood flow downward towards your fingertips.
I have been enjoying the rare sunny days in Ohio. Still feeling fatigue but gradually getting stronger. So frustrating when you want to do something but don"t have the energy to do it. It sure was nice to have a couple weeks with no chemo or Dr appointments
I go for my rad mapping on Monday and I am sure they will start me soon. 7 wks ugh, but this is my last stretch !!!!
I have just been wondering....... How do they know they got all the cancer? I had my lumpectomy first, chemo. now radiation. Going to ask my MO if they will do another scan or what. When they did a PET scan in the beginning the saw a couple small glowing spots on my lung and other nodes. They were so small they couldn't tell for sure if they were cancer. MO was sure chemo would kill it. Just wondering how they know for sure??
Have a great week everyone. Keep healing, keep fighting though.
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Lisa and Hiker- so happy everything is going well for you both. Rest up and allow your body to heal:)
DDK- I asked the same thing to my MO. He said no more scans unless I am having pain for at least two weeks. Very scary to know it is just a wait and see approach. I've been a little emotional this weekend as my last chemo is tomorrow but I still have rads and the hormone blocker in the future so i feel good knowing I am still fighting it!
Good luck tomorrow Agatha! I will be thinking of you. Just an FYI I didn't even need pain meds after my lumpectomy as I had no pain.
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Hi ladies.
Doing well today. Weaned off the big dog pain medications and now am just using Aleve. It's so nice not to feel drugged up all day. I'm still sore but it's quite manageable. I've been doing my range of motion exercises all day and plan to take a half mile walk while the sun is shining. It's quite peculiar having these implants under my skin. It feels exactly like it is and I'm not a fan of the feeling. Can't imagine doing this voluntarily. I'm going to put up with them for a year, and then if I still don't like them, I'll have them removed. Hopefully I just need to get used to them.
As far as knowing if they've gotten all the cancer: Good question. I've never had a PET scan. My MO says that they don't do them anymore. If the biopsies come back clean, I'm supposed to take it on faith that I'm cancer-free. They'll give me some things to look for moving forward, and if I find anything that might indicate that the cancer has metastasized, they'll do more tests on that particular spot. Seems like a bizarre way to manage it all, but I'll know more when I meet with them. I might insist on a PET scan just for my peace of mind. But the last time I asked, she said, "You could get a clean scan today, and have a cancer pop up the next day. So what good did it do?"
Well, easy for HER to say!
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Good to hear your off the big dog meds, Lisa. I had a lot of dental work done in the year before dx, and prescribed Oxy. I don't know why people want this drug so much, it just makes me foggy and what to sleep all the time!
My BS has warned me of that numb breast feeling. That it won't feel like my normal breasts. I wonder too how I will adapt. I have a dental implant put in back in September and it still feels weird. That there is no feeling there. And that is just one tooth, not my chest! Speaking of my BS, my husband took daughter to private birthday party yesterday (at one of those kids bounce places) and who happened to be there (at the same party) but my BS. She has 2 young girls around my daughters age. Talk about small world.
I never had a PET scan either. I had a MRI at dx and I will have another MRI next week (considered pre-surgical). The BS ordered it. My MO was just going to order another spot US on my tumor like I had after AC. If they are going to do a US, I expected them to at least do the entire breast and lymph nodes not just the one tumor they know about. I know my SIL who had early cancer, pays for a PET each year out of pocket ($8,000). I do get what your MO said since my mammogram didn't catch my tumor 7 months prior and it was 2.6 cm when I found it. And you always hear about false negatives or it being nothing. But wanting some reassurance is totally understandable!
Thinking of you tomorrow Agatha! I would love to see you being wheeled down 1st avenue!
I am sure crazier things have happened in NYC. And I saw you mentioned the pink pockets on the surgery thread (I am starting to read those). I ordered those today along with a few button down shirts and PJ's. I don't usually wear button down, so I had nothing in my closet. I still have on my list (maybe) zip down cami, shower stool, wedge pillow. I worry the most about being able to get out of bed and to the bathroom on my own. We have a soft memory foam bed, that I sink into. Or an old school style recliner that I would need someone to pull the feet up and push the back for me. My BS mentioned not being able to shower for 2-3 weeks (I assume while the drains are in) and to make sure my husband installed a removable shower head.
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