Oct 9, 2018 06:00PM - edited Oct 9, 2018 06:00PM by Engine104
I like the "Together We Fight" one too. I have a pink patch that our local search and rescue did. I may need to order that one too :)
Regimens, side effects, and support from others going through chemo.
Posted on: Mar 23, 2018 08:08PM
I am very new to these boards so I am not too familiar with all the terms and abbreviations but I do find the posts very helpful. I've been lurking around but have never posted anything until now.
I had a mastectomy on my left breast on March 5th and reconstructive surgery at the same time. Surgery wasnt too bad and recovery was better than I expected. Next on the treatment plan is 4 rounds of taxotere cytoxan (TC?). My first round is on April 5th. After reading the other topics from previous months, I really wanted to be part of the April 2018 group but didnt see one. Looking forward to hearing from others.Log in to post a reply
Posts 1531 - 1560 (2,415 total)
Oct 9, 2018 06:00PM - edited Oct 9, 2018 06:00PM by Engine104
I like the "Together We Fight" one too. I have a pink patch that our local search and rescue did. I may need to order that one too :)
Oct 9, 2018 10:35PM DebAL wrote:
hi everyone. I hope everyone is doing well. Evacuated safely to new orleans. We wanted to experience bourbon street anyway! Hopefully some sight seeing tomorrow. Engine we had the hula pie in Maui. It's delicious! Take care everyone
Oct 9, 2018 11:04PM Engine104 wrote:
Glad you are safe. A buddy of mine is in law enforcement in Panama Beach and he can't leave. I hope he'll be ok.
Yes, the hula pie is amazing. Was it at the Duke's in Maui?
Oct 9, 2018 11:26PM urdrago71 wrote:
hi everyone just thought I would summarize what I've experience after my surgery. I can move my arm further away from my body, with my hand supported at wrist . which I believe is a good sign. Dont have strength to lift arm or move arm independent with muscles and tendons. Also the numbness extends to the back side of arm in the crease. As well as under the arm in the arm pit. I think I've got most of my feeling back along upper arm til I get to shoulder or armpit. So the numbness after axillary lymp node removal will be ongoing , and I dont know how much feeling might return. Or how long til my mobility will return?
I'm taking pain meds but also supplementing with tylenol in between as nerve pain is lessened.
How long does it take for pathology to come back after surgery? I realize that all of it is frozen sent out and then cut checked but what's the timing in it..hate waiting!!lol
I will keep everyone posted as I recover.. sending to good vibes to everyone ..
Oct 10, 2018 07:03PM Frog-on-the-lilypad wrote:
Hello dear friends, I am so sorry I went missing. I will come to that.
Urdrago, I am so glad you are doing well. Thats some good arm movement you have after the axillary dissection. My paths came back in 8 days. But it will also depend on howmuch work they have at the labs. All the best for your path results.
Today was the 6th day of radiation. Breast feels a bit sore. I do not need to use any cream or anything because of the Mepitel they have put. Its a film of silicone which covers the whole breast barring the nipple. Nipple is quite sore. I got a foam patch for it today. I will need to remove it during shower and treatments. The Mepitels stays on. I do feel tired, but then I have a bad cough so am not sleeping very well. I was freaked out about coughing on the radiation table. Thankfully, I have been able to control the urge. Also, I use a clove as a cough logenze and it works much better if you ask me and are okay with the taste. Just keep it in your mouth and bite on it when you feel the cough coming.
When I had a PET CT way back in April they found a nodule on my thyroid. My Oncologist assured me that its probably nothing and even if it was the breast takes precedence. So I believed her( did not have much choice) and put that on the back burner. Well, I had the thyroid biopsy done last tuesday and heard back yesterday, its benign. So relieved. Also, thyroid biopsy is no joke. Its way worse than the breast biopsies. Its a fine needle one not like the core biopsies we had for the breast and still, worse. Was not doing very well coping with the biopsy and waiting for the results. Was very sensitive and anxious
DebAl thats a beautiful picture. Engine, that looks yummy. I am not much into sweets but since starting radiation I have been craving icecream. I have a big bowl every night with lots of fruit in it. Ingerp, you still into desserts? I remember you loved your desserts while on chemo.
Stay well everyone.
Oct 10, 2018 08:14PM GAWarrior wrote:
Life, radiation is exhausting from what I hear. I'm sure the fogginess is part of the anxiety, but I know I still have chemo brain at 5 weeks PFC. Don't be too hard on yourself. Maybe ask about a referral to talk to a therapist? Also, exercise does help - if you can get out and walk and get a change of scenery, so to speak. Get the endorphins going. Maybe plan something with friends so you have something to look forward to? Sending you (((((big hugs))))).
Engine, that pie looks awesome. Hoping you and Janice are feeling better. We were going to go away this weekend for some R & R before my surgery next Friday and suddenly half my patents are coming in sick. We decided to cancel so I don't come down with anything that will postpone the surgery. Rest up and take care, you two!
Urdrago, did they give you arm exercise to do? Keep up with them, if they did. A friend who had a MX says they did PT with her, you might ask about it. Nerves take a long time to recover/regenerate. In the dental world, we usually say whatever you have back at a year is what you'll get, so there is lots of time for some of that numbness to go away.
DebAL, glad you're safe. Enjoy New Orleans! (By the way - you have new boobs to flash, you know...they give you drinks for doing that on Bourbon Street. Just sayin' lol.)
Frog, so glad the thyroid biopsy was benign, such good news! I'm sorry you had to go through it, but what a relief.Thanks for the clove idea - I will have to remember that when cold season really kicks in. Hoping you feel better soon and that your cough subsides quickly (and that your radiation goes fast. You had 15, I think? If so, you're nearly halfway done. Feel better!).
DebAL may have missed Hurricane Michael, but we're getting some of the storm here in Atlanta. It's been raining since about 6:00 pm, and is breezy off and on. The high winds and big storms are supposed to start around midnight and the whole thing will be gone around noon tomorrow. At least it's moving fast.
Oct 11, 2018 01:06AM Engine104 wrote:
The hula pie is as good as it looks :)
I saw that hurricane Michael is coming up towards Atlanta. It is weakening, so hopefully you'll just get rain and not too much. The buddy I mentioned earlier had his house, one he'd just remodeled, destroyed. He had to stay behind, being a state police officer, and a tree fell onto his house. The wind did the rest. We were pretty worried about him because his last message said half his home was gone and he and his dog were safe and holed up in the master bathroom. No one heard from him for six hours until one of his fellow officers was able to get to my friend's house and found him and his dog ok.
Oct 11, 2018 01:14AM urdrago71 wrote:
Omg Engine, that's very unfortunate and fortunate at the same time. Glad to know he is safe and has his best friend with him. I heard that the last time a storm has hit the same path was back in 1850's. We all have are own chaos in life. That's foresure..
Oct 11, 2018 01:34AM LIFE1963 wrote:
Thank you GaWarrier. The Radiation Dr suggest a therapist as well. Told me to let her know tomorrow my thoughts on that.
Engine so glad to here your buddy is safe and sound along with his fur baby friend! That pie looks scrumptious!
Frog That is good news about your thyroid! What a relief for sure! How many treatments of rads are you doing. I am doing 33. I have 8 left. My skin has a small rash underneath the arm pit but that is it so far.
Undrago sounds like your healing nicely! My under arm was starting to feel better then radiation came along and now I am numb again and feeling the burn. Still do my stretches every night. Slowly but surely you will start getting stronger and stronger. Are you doing rads as well?
Well I'm off to bed. Should have been in bed a couple hours ago but I found myself cleaning house instead. I have to work late at my cleaning job tomorrow night because they are doing free mammograms from 5 to 8 so we can't clean until after. I'll probably regret staying up and cleaning my house tomorrow right now it feels great. LOL
Hugs to you all out there!
Oct 11, 2018 05:55AM GAWarrior wrote:
Oh no, Engine! So sorry about your friend's house, but so glad he is safe! We saw early pictures of the devastation down there last night but today will really show how bad it was. All is quiet here. The eye went through a little south of Macon, which is about 90 miles from us (?). We've got a lot of trees down, some areas with flooding, and some power outages. Thankfully, we just got slapped, not punched!
Life, be sure to get your rest. Being tired adds to anxiety and depression. Hang in there!
Oct 11, 2018 06:19AM Ingerp wrote:
Frog—great news on the thyroid biopsy!! And yes I had a serious ice cream craving through chemo but it died down quickly after I was done. No particular cravings through rads. I had my last one a week ago today and the boost area is still a little angry but everywhere else is just a little darker.
Engine that’s awful about your friend’s house. I really can’t imagine. We’ll get some rain today in Central Virginia but this is a really fast moving storm.
I’m kind of excited that I’ll wear a baseball cap out to run errands at lunch today and a bandanna to my yoga class this afternoon but then I am done. I’ll venture out topless tomorrow for the first time—not nearly as much hair as I’d like but I’m already planning outfits around big earrings and necklaces. ;-)
Oct 11, 2018 07:41AM - edited Oct 11, 2018 07:42AM by InnaB2018
Frog, glad your biopsy turned out to be benign. What a scare!
Engine, sorry about your friend's house, but happy he is all right. That hula pie looks to be about a gazillion calories! Delicious!
Life, I imagine it's good to be almost done with the rads. Me, I just started.
Urdrago, happy you are feeling better after the surgery. Pathology took about 2 weeks in my case. I learned the results during my first appointment with the surgeon.
Ingerp, you go, girl! Although I still maintain you looked great without you hair as well. And very stylish!
GAWarrior, when will you know your results?
I have my third radiation today. So far so good. The cords under my arm are looser and I finally finished the 10 day of Pylera antibiotics, that took me down just like chemo did. Glad to be done with them! Now I have to start thinking about getting on a diet, since my weight now is the same as pre-diagnosis. I need to lose at least 15lb, but I am sure that some of it is just water weight Because my feet and hands are still swollen. This is my 7th month in therapy. It feels like life's is passing me by. People are traveling and having a good time, and I get to enjoy 200 centigrade of rads beamed into my body every day. Not much in the way of hair yet, still look like kiwi. Eyelashes and eyebrows came in very light, almost invisible. The dark brow hair fell out. Hopefully I will look more like myself by Thanksgiving.
Talk to you later, ladies! Stay out of trouble!
Oct 11, 2018 01:20PM Engine104 wrote:
I have not heard from my friend directly yet, but it sounds like he is ok. Thanks everyone for your thoughts. I'm glad to hear that the storm wasn't too bad for you, GAWarrior and IngerP.
Still not much progress on the hair front here. Janice has a very small amount of peach fuzz, but that's it so far. She seems to be feeling better from her cold.
I think I mentioned that I asked our campus police department if they would consider joining the Pink Patch Project? So far, no response :(
The hula pie is worth every calorie :) You can order it as a dessert or they give you a free one on your birthday or anniversary. My birthday, Janice's, my son's and our anniversary is in June. One year we went to Duke's and had hula pie about four times during June. :)
Have a good day, everyone!
Oct 11, 2018 05:00PM urdrago71 wrote:
Frog, im sure that was a relief to know benign. Im doing the happy dance for you. After my apt. Monday I will probably have a ton of questions for you..😉
So results are in, clean margins for tumor of 1.3cm. And 2 of 18 lymph nodes had cancer. I will get drain out monday . Also a check up and discuss physical therapy and radation. Glad to have that part of this journey done.Getting closer to end ..
Sorry to be short but going to watch nieces cook, chicken and rice for dinner. And desert apple upside down cinnamon rolls, yummy...
Cyber hugs to all..
Oct 12, 2018 05:46AM Ingerp wrote:
urdrago—sounds like the surgery went well and I’m sure you’re looking forward to getting that drain out. Wishing you a restful, healing weekend.
Oct 12, 2018 10:34AM GAWarrior wrote:
Ingerp, how's the going topless thing working out? Our temps dropped 20 degrees after Hurricane Michael left and took summer with it. I couldn't go without a head covering - I'd freeze (it was 52 here this morning). Enjoy it!
InnaB, I know what you mean about feeling that life is passing you by. I've had the same thoughts all summer. We are scheduled to drive to FL to see my daughter 2 weeks after my surgery (path results come the following week) and I might not even get to do that because of drains and a post-surgery check up. Ugh. I bet part of your weight is water if you're still drinking tons of it. I've sort of slacked off this past week and I dropped 1.5 pounds like that <snaps fingers>.
Urdrago, congrats on clean margins and getting the drain out on Monday. Another step done for you. Rest up and take care.
Have a great weekend everyone!
Oct 12, 2018 02:28PM duffyzmom wrote:
Happy Friday All!
We had a wonderful Canadian Thanksgiving trip to Chicago to visit son and then of course life back to normal. I had Herceptin this week along with follow-up appointment with breast surgeon. Thankfully, no medical appointment for the next two weeks. I'm trying to schedule appointment so that they are near my Herceptin infusions so that I can feel like cancer isn't ruling my life.
Frog - great news about your thyroid biopsy. I have Hashimoto's so I've endured 2 thyroid biopsies and they are miserable.
Engine - I hope you hear from your panhandle friend soon. Tell Janice not too worry too much about the hair. I'm 9 weeks PFC and still not going topless much. Partly because we've also taken a dip in temp here and it just seems too chilly.
Udrago - Wonderful news on the clear margins and your range of motion sounds like great progress.
GAWarrior - How soon is your Disney trip? We have a trip to the Keys coming soon. Of course, I notice this week I'll probably have to shave my legs to wear shorts. I was teasing hubby - his postmenopausal wife is going through puberty again. lol
LIFE - I've been dealing with anxiety since finishing radiation. Not sure if the radiation caused some of it or if it is just the change in schedule. Luckily I still have Xanax and when mediation or deep breathing doesn't help I take a half a tablet.
Ingerp - Good idea about the earrings and necklaces. I've been wearing scarves a lot more recently so I'll through those in too.
Have a great weekend everyone.
Oct 12, 2018 04:33PM Ingerp wrote:
Yes I found it a little ironic that the day I start going topless we had the lowest morning temps we’ve had in months. Oh well. . . This is me getting my Herceptin this morning. 10 weeks PFC.
Oct 12, 2018 06:54PM Engine104 wrote:
Duffyzmom: I noticed last night that the peach fuzz is getting more noticeable. I think Janice is also about 9 weeks out from her last chemo. Her hair was pretty thin in places before (A result of all the chemo she had for her AML 16 years ago), so we're hoping it comes back at least as much as before this.
I just heard back from my friend in FL. He is doing ok. Thankfully, his friends, both in law enforcement and the community, are helping him. I don't know if I mentioned that he suffers from PTSD, which is a result of an office involved shooting he was in last year. He had responded to an armed robbery at a bar and got into a shootout with the robbers. He's been on disability since then, so all of this is not helping that, unfortunately. It sounds like he is doing ok, though.
What area does your son live in Chicago? Our son moved there after college. He lives in Palatine. We're planning to visit him Thanksgiving week.
I hope everyone has a wonderful weekend!
Oct 12, 2018 09:58PM Maggie2 wrote:
Ingerp, such a beautiful picture! I can relate to the crazy weather. Indiana went from record breaking heat earlier this week to wind chill of 36 and “ice pellets” today. Having always had long hair prior to chemo, it was a surprise going out in this weather. Oh to be living back in Southern CA enjoying Duke’s Hula Pie with Engine and Janice.
Urdrago, congrats on the clean margins. I was so anxious to get the drains out after the mastectomy. You’ll feel so much better once it’s removed.
Hope all of this April group has a relaxing and restful weekend
Oct 13, 2018 01:09PM Engine104 wrote:
You are welcome here anytime :) Actually, Lord willing, we will be fellow Midwesterners in a few years. Just at the time when most people move from Indiana, Illinois, etc to retire, we'll probably moving to Chicago to be close to our son. He will probably get married next year or the year after and I know my wife will not be happy seeing grandkids once or twice a year. :) My personal preference would be IN, preferably Bloomington (Our son is an IU grad), but that is still a 4-5 hour drive to my son, which is too far.
Oct 13, 2018 07:54PM LIFE1963 wrote:
Ingerp I just love all the pictures. Your outfits and jewelry all look so nice and fun! Me, lately I find myself throwing on a pair of sweats, jeans a sweatshirt no makeup because I have a beard on my face and I don't want to bring attention to it. Have not had any jewelry on lately and I sell Paparrozi Jewlery on the side. I'm either tired, depressed or just being a slacker.
GaWarrier thank you for the advice. You are right on nights that I don't sleep well my anxiety is way worse the next day. When is your surgery scheduled? I can't quite remember if you posted a date about that or not. My mind is definitely not as keen as it used to be.
Innab I'm with you and Gawarrior. I was actually very depressed when the weather started turning cold because I feel like I had no summer at all. I got to go four-wheeling for a week and a half so I shouldn't be complaining but it wasn't all that warm out there that week. And then when it started warming up I got into radiation and was told to stay out of the sun as much as possible. Now we're having weird weather, 65 one day and 20 the next. Brrrr. PS who wants to behave. Lol
Duffy thank you for sharing about the anxiety your experienceing. I feel less alone now on that subject. I believed I have shared with you guys a while ago that I have anxiety taking different medications. I think it's just because I live alone and I never know how I am going to react. It could just be that I don't like that out-of-control feeling not able to be alert if necessary. Ya I will think if any excuse. However, I do believe I'm probably going to have to get past that as I get older because one does need their sleep and anxiety sucks!
Undrago. Hope you're having a nice relaxing weekend just chilling out and not having any issues to deal with. Good to hear you get your drains out on Monday.
Engine that's going to be a major culture shock when you go from relaxed California sunshiny weather to Chicago. BRRR! Your right why most people seek out warmer climates to retire in you guys are going the opposite. It reminded me of a movie I saw one time called "Go East" A comedy about a bunch of settlers that during g a time where everyone else is heading West they decide they don't like the West so they head back East.
DebA I hope you're out there enjoying your vacation!
My hair is growing still but now it's starting to get a little wild looking like I have a cowlick and hair sticking straight up in the back. Talk about Bed Head look. LOLThink about everyone often. Can't wait till more of you are feeling ready to share your beautiful faces out here!
Have a wonderful weekend!
Oct 14, 2018 01:20AM Engine104 wrote:
Yeah, I've got mixed feelings. I very much would want to be a part of my grandkid's life, but I really don't want to move to Chicago.
I suffer from anxiety too and I also find it is worse if I don't sleep well the night before. I keep a radio with an earphone by the bed. I find that stops my mind from racing and I can usually get back to sleep.
Oct 14, 2018 10:21AM duffyzmom wrote:
Engine - As an IU grad myself I vote for Bloomington. Such a great college town. Son and his girlfriend are living on the edge of Lincoln Park/Lakeview East. Nice little area. They will be getting married in 2020.
Oct 14, 2018 12:08PM DG1986 wrote:
I finished the “bad” chemo in July. I had lumpectomy in September and developed MRSA. I was just starting to feel good too! It really set me back. Now I have a huge hole in my chest. I drive 40 miles to a Wound Care Specialist. They say approximately a month and a half to heal. Everything has stopped for now. I have to wait till I am healed to receive chemo. I am really upset because when I talked to my Cancer Doc the other day, he said he was going to start me back up on Perjeta along with my Herceptin. (I am suppose to finish Herceptin in March). I asked him why he was adding the Perjeta and he said that was part of the plan all along. No one has told me this! The recipe was 6 doses of chemo, surgery, radiation and the pill. I am thinking about a second opinion. Have any of you had this happen? What do you think? Thanks
Oct 14, 2018 05:22PM Maggie2 wrote:
DG1986, you have really had a rough time. I'm sorry that I can't offer any help. I had Taxatere and Cytoxin chemo regimen so I have no experience with your situation. I would suggest that you speak further with your cancer doc to get more details.
Oct 14, 2018 05:40PM Maggie2 wrote:
Engine, thanks for the invite! My daughter and her husband live in the LA area so at least I still have a good reason to get back for visits to warm, sunny SoCal.
We were relocated to the Indianapolis area just a few months before my annual mammo showed breast cancer. As part of all the scans for the BC diagnosis, a very small kidney tumor was discovered, too. We've only lived here about 1-1/2 years and most of this time has been spent with doctors, or so it seems. At this point, I think probably you and Duffyzmom know more about Indiana than I do :). My brother lives in the Chicago area and we have yet to drive up to visit him, but everybody says it's about a 4-5 hour drive. The cost of living here is certainly attractive, especially the housing costs! We will be glad to offer any assistance with info, opinions, etc.
Oct 14, 2018 06:07PM Engine104 wrote:
Hi Duffyzmom and Maggie 2,
Lincoln Park/Lakeview East. Is that by Ellettsville? Our son student taught at Bloomington South HS.We love B-Town, but it would still be 4-5 hours to drive to our son. He is in Palatine, which is in the NW Chicago suburbs. That kind of drive would not really solve the problem of being as involved with the grand kids as much as we'd want, I think. In any case, we'd have to be able to retire before we could relocate and I don't see that happening for at least three to five years.
Oct 14, 2018 06:29PM Maggie2 wrote:
Engine, it is always good to start thinking about such a major event in advance. We know we could never retire back to Southern CA; it's way too expensive. We definitely prefer a warmer climate than here. Retirement is way down the road for us, even though it's nice to think about!
Oct 14, 2018 07:50PM Engine104 wrote:
The home prices are ridiculous here in SoCal. Just to give you an example, my BIL and us refinanced a few years ago. We have a 3 bedroom, 2 bath (1750 sq ft) home with a small back yard in a middle class part of L.A. My BIL lives in a small town in Western KY. His house is on five acres, has three floors and an indoor pool and pool house and his house appraised for the same amount as ours (~$520k). Crazy.
I do wish my wife could retire sooner rather than later. She has a stressful job and that is not good for someone in remission.