Anyone starting chemotherapy in July?

boricua_63

Well, is official, my hair is coming out in chunks. Even though I prepared myself for this, I can't help but feel sad. I guess we will never be ready for the loss of hair.

Take care everyone!!!

DancingElizabeth

Well...3 days into this second round and I feel like it's hitting me like a bag of bricks...heartburn, nausea and mouth feels like paper......

Boricua63 - I'm sorry you're feeling sad. It's a lot to get used to... My hair - started coming out today - too. I had a feeling it would happen soon - as my scalp has been getting tender. (I am SO glad your cervical results were normal...but sorry you had to go thru that....just unbelievable...)

Lindzanne - you look great!

Well...going to try to eat something and rest...DD's sleeping over at a friend's house tonight....I miss her but I know she's having a good time..

I hope everybody's doing ok today....

Lindzanne

Good morning from Seattle. Just wanted to say hi to y'all. I'm almost bald now, I wish all these hairs that are clinging would just come all the way out! I actually got some box tape out over the weekend and used it on my head to help pull the hair out! It worked and got rid of a lot and was actually very soothing because my hair follicles were all itchy and tender. I looked ridiculous but who cares. Got my scarves out over the weekend so am going to start wearing them as of today. I think my rapidly balding head is starting to scare the kids at work! I took a leap and shared a much balder photo than the one here, on Instagram this weekend and got so much support. Helped me a lot with the transition.

I never thought I'd be happy to spend a weekend doing chores but I spent it alternately resting and doing chores and running errands with the husband. I relish feeling normal. I feel like myself except for lingering fatigue. And then here we go again on Thursday with round 3. I admit I'm nervous because this 2nd time was worse and I assume it will just be a little worse each time. Upside is, 3 out of 4 down! Then Taxol! I put a question out to my local support group about folks who had done AC and then Taxol. The majority said Taxol was much easier and most said their hair started coming back during that time. Interesting. Everyone is different though so we shall see.

Scared67, day three hits me like a ton of bricks too. 😣 I hope it's the peak before you upswing and that you are feeling better. I have some mouth spray, I'll find it and let you know the brand if you want, for dry mouth that really helps. And I suck on my ginger Tummy Drops.

Boricua I'm so glad your results were actually normal but someone still owes you an explanation! Like you needed this on your plate! Sometimes I feel like the med folks forget we're people and just share indiscriminate information that either isn't accurate or needs to be shared with us sensitively. I'm sorry you're grieving your hair, one more little thing we can't control. I relate to the sadness.

Thanks for letting me ramble. I think I need to come here and vent because I have so much support but you all really know what it's like, so I sometimes feel like I'm just babbling but it helps me so much to get all my thoughts out.

Hope you all have a good day. Sending healing thoughts.

Lindsay💙⚘

roofcat59

Kdlee,

Am totally new to the discussion boards. My treatment plan sounds similar to yours, with 12 weeks of Taxol plus herceptin, followed by herceptin for a year. At some point I will also get radiation. My breast surgeon conveniently left out the part of chemo being a "given" because of the HER2 status of my tumor. When I saw the 1st oncologist and she dropped the chemo plan in my lap I could feel my heart drop down to my stomach. She was pushing the AC-T plus herceptin regimen. Got a 2nd opinion and was offered the Taxol only chemo option as the 2nd doc had seen the data from the APT trial at Dana Farber. Had my port placed Friday and I begin therapy on Wednesday. I hope your therapy has been going well for you so far. I too am really nervous and scared about Wednesday but thank goodness for all of the discussion board members; I've been learning a lot from reading your posts - thank you so much. I admire you all for your determination as you are fighting so many different battles. The radiologist who did my port insertion, when he read my chart, said "Oh, it's only breast cancer - you'll be fine". I thought to myself - "ONLY" breast cancer - easy for him to say. I do understand where he is coming from as I'm sure he's performed port placement on many worse cancer cases than mine, but I hope no one ever has to say to him "Oh, it's only prostate cancer . . . ".

Karou

Hi I have just had first dose of chemo ( FEC ) today and am feeling a bit wiped out! I have been reading up on hair loss etc and cut my hair short and have decided to dye it bright blue seeing as I will lose it anyway! Hoping this will settle down after a few days

Karou

I know how you feel 'only breast cancer' ridiculous man! Just have to get my husband to keep telling me all the happy stats on really good survival rates etc... I had my port done last week so far much better than getting a new line every time

Moderators

Hi roofcat and Karou! Just wanted to pop in and extend a warm welcome to our amazing Community!

Thanks for posting -- you're sure to find wonderful support here and throughout our Discussion Boards.

Please continue to let us all know how you're doing!

--The Mods

roofcat59

To "The Mods" - Thanks for the welcome.

To Karou - thanks for your comment. Good luck with you chemo. I feel so fortunate that I have to get just one chemo drug along with herceptin. But . . . I also am fearing the hair loss, not just on my head but eyebrows and eye lashes too!! Initially I thought, well, I'll just go with the bald look, but I've decided I'm going to get a wig in case I change my mind. Didn't realize that this stuff could also cause my nails to discolor and possibly fall off - real bummer.

To all of you on the boards, have any of you joined a local "face-to-face" support group and, if so, how helpful have you found it? I'm toying with the idea, but my days seem so filled with one doctor and clinic appointment after another that I don't know if I want to devote an evening too. But, it's only one evening a month, so I guess I could do it if I thought it would help. Also would be happy to know anyone's experience with integrated medicine modalities like reiki - helpful or not? I have been a one-class-a-week yogi for many years and have missed a lot lately so am feeling really NOT centered if you know what I mean. My port area feels like someone assaulted me. I thought the port insertion post-procedure recovery was way worse than the lumpectomy and the re-excision due to positive margins.

Anyhow, I hope you all have restful nights with pleasant dreams. My first round of Taxol is tomorrow morning - wondering what I should eat so that I'm not dying of hunger but don't have lots of food in my stomach if I react to the antihistamines or steroids. I'm just hoping I feel like baking tomorrow after I recover a bit. I had planned on making blueberry oatmeal bread so I have a nutritious snack to munch on in the mornings.

Thank you again to my fellow "board members"! I hope to get to know you a little better.

Cwhitney

Hi Roofcat59. I did join a local support group after I was diagnosed. My husband actually called because I was beside myself when I was diagnosed. These women were amazing. I had a phone call from at least 10 ladies talking me down off the cliff and they were all strangers. They even had Her2 survivors call me and one has become a good friend since then. It is a unique group (Beyond Boobs) because we are all under 50 diagnosed with breast cancer. Anyhow, I love these women. They visited me in the hospital several times and called me throughout the very beginning of everything. I haven't been to an actual meeting yet but because I have been lazy but I have gotten together with them individually and have become friends with a few. It has helped me so much especially because most of them are done with their treatment and I see there is a light at the end of the tunnel.

I too have taken up yoga again and even started talking to a psychologist and I am finding that it all makes me think less of cancer.

My next round of chemo, second one, is on Monday. I still have all of my hair but I noticed that when I brush it, alot of strands are coming out. This is the part I always hated when I heard I needed chemo. I have the wigs, hats, etc. but I'm still dreading the day I will have to shave it all off.

Anyhow, I hope everyone is hanging in there and feeling better everyday. We will beat this!!!

roofcat59

Thank you so much Cwhitney for your reply about your experience with the support group. Guess I'll give the one here a call. Sorry to hear about your hair. A great local organization called Positively Pink Packages provided a tote bag of resources that has a pink stretch turban in it - not exactly my style but much appreciated until I find one that suits. Good luck with your next chemo. My first one went relatively well and I didn't have the possible dreaded anaphylactoid reaction to the Taxol. The Benadryl, however, really hit me like a ton of bricks. Next time they promised to halve the dosage.

To everyone on the boards: "May you abide in loving kindness, May you receive everything you need, May you be free from all suffering, May you be at peace."

Karou

hi all thanks for positive messages! Felt much better yesterday. Really want to try and stay active as it does seem to help from what's been said but may need another day before back on the excercise bike. Due to start self injecting with GCSF toworrow to boost my blood counts so hopefully will be feeling a bit more energetic in a day or 2.

To roofcat59 my chemo nurse was very reassuring but me only having some thinning of eyebrows/ lashes so not everyone loses these types of hair apparently! I decide to go with bright blue hair seeing as I was going to lose it anyway and have never dyed hair before!

boricua_63

Hello ladies

Welcome new members!!! Glad you are here even though is under this circumstances.

Well, I'm almost bold and is not even a week after it started to fall. I have been using a lint roller to help out. I got my hats and my big hoops on.

Tuesday the plastic surgeon removed the tissue expander ( I got and infection) and let me tell you I feel so good, no pain or discomfort. And I don't think I will be doing the reconstruction after chemo, I don't want to go through that discomfort again.

So my second treatment was postponed from last Friday to this Friday and is most likely tomorrow's treatment will be postponed again due to the surgery. I'm just waiting for a call from the cancer center. ( it seems they don't like to call patients back) since I called yesterday and still waiting for a call back.

My oncologist will hear about this, and if they don't get their act together, I will be looking for another cancer center to have my treatments, and is sad because I like my oncologist.

Hope you all have a good day.

Hugs💕💕

xxyzed

Boricua63 - I had AC treatment the same day as you and have just yesterday started to drop significantly more hair. I think my days with passable hair are numbered and I'll have to join you in the bald head brigade. I had me second AC cycles yesterday so I'm sure that will help it along. I think things will get better quickly with the expander removed. I never had reconstruction with the breast removal and have had no issues with recovery from the surgery. At the moment I'm doubting I will get reconstruction but we'll see if I change my mind when the time comes. I'm pretty adaptable to most things. The only thing I insist on is that someone can take my calls when I think I'm having a problem. If you like your oncologist perhaps there is a different system your centre can use to manage this communication problem. I know at my husbands centre I lodged so many complaints he was assigned his own patient liaison officer who followed up on everything for him and kept in close contact with us which helped to greatly ease our concerns. We were soon known as the difficult patient with a bulldog wife so started getting skipped past the junior staff with everything handled only by seniors. He did have a lot of issues. It just took them a while to realise he wasn't making them up and he was that one patient with all the presentations they had never seen before. My gut told me he was where he needed to be they just needed to bring more to the table. Your gut will tell you what you need to do.

On the support groups there is one local to me that I intend to try to get to next in a few weeks. I'll give it a try and see if I go back.

I would like to get back into my yoga but at the moment am paranoid about infection as that is what my husband died from during his treatment. It's different circumstances but I can't get past being confined to a small room with a group of potentially germ ridden people (we're in the middle of winter here). I'm limiting myself to outdoor walks weather permitting and avoiding anything indoors with large groups of people. I don't know if it will help my psychological welfare long term but it's what I'm happy with for now

Lindzanne

Hi all, just sitting here in the chair doing my third round of AC. Really had to drag myself this morning. It sucks that the day I've finally gotten back to normal is the day I go right back in and do it again!

I am almost bald. Just thinner and thinner stubble. The lint roller is such a good idea!

Boricua I'm glad you're feeling better after your expander removal. Sorry youre having those communication problems. I'm with xxyzed, be a bulldog. Maybe they'll start getting back to you to avoid your wrath!

I am a member of a local support group BUT I haven't been able to get to a meeting. I stay pretty engaged with the Facebook page and PMing folks and even though it's been online I know I have people close by who would help me with anything, I did have a member come over at almost midnight one night to show me how to better strip my surgical drain bc I was having issues. She would not take no for an answer and was right there for me the minute I needed her. So I think it's been very worth it being part of the group and I feel like I will be among friends when I do get to a face to face meeting.

Wishing all of you healing and a good day.

Lindsay

xxyzed

Lindzanne - how sweet to have a pushy new friend who knew what you needed when you were struggling to deal with it yourself. She's a keeper.

I was a bit scared off my local group as it is facilitated by one of the school mum's who is 5 years since diagnosis who seems to be doing fabulously, she had fantastic support from her husband and parents and has two little girls that seem to be great. All things that are the complete opposite of me and I didn't know if I was ready in the early days to be hearing positivity from people who were so far from where I am. I think I'm emotionally strong enough to deal with it now so hopefully I'll get to the next meeting and we'll see if it's a good fit or not

HelenWNZ

Hi everyone - good to hear everyone is nicely moving forward.

Sorry to hear about your troubles Boricua I wasn't offered a reconstruction as my surgeon said we can look into that later - lets get you healed and onto the next phase of your treatment. In some ways I am so glad as I only had a drain in for a couple of weeks and everything is now healed nicely. Although I do have a lot of trouble with cording and will have permanent numbness due to the removal of so may lymph nodes. I hate being lop sided but that can be looked at later when I am in a different headspace.

Round 2 for me today. Was very apprehensive about the whole thing didn't sleep much last night even though I took a sleeping tablet. After a meeting with my oncologist on Tuesday we have lowered my dose by 10% and I will have an injection tomorrow which should help with the white cells. Hopefully this will keep me well enough. I also have stronger pain meds and at least now I know what I like to eat and drink so will be better prepared. Although I shaved my hair its growing back so I might have been a bit to quick of the mark for that but to be honest I would rather lose stubble than longer strands.

I managed to go to work for a few mornings this so that kept me out of trouble so hope to do that more often.

My work have been so good - last Monday 5 meals arrived and they have a roster right up until the end of August. Its a bit embarrassing but they all want to help. Plus they asked if I would like a cleaner for a couple of hours a week. I declined as I am so lucky to have a great partner who is OK with housework. And me I get busy on steroid days LOL

Take care all of you

Lindzanne

Helen that's so great about your coworkers, it means so much to have one less little worry, like meals, on your plate, pun intended.

Just a heads up my shaved head was growing back too and then about 4 days after round 2 it started coming out in my hands. So I shaved it really close and now I'm just a head of random stubble that comes out mostly in the shower.

Good luck with round 2, I'll be thinking of you.

Me at round three yesterday, with my scattered stubble egg head.

Lindzanne

xxyzed yes that visit from my friend meant so much. It was also the first time anyone else who had gone through breast cancer had just grabbed me and hugged me and we both just cried because it's so powerful to get that love from someone who really really knows. She's the same age as me too, so lots in common. She's been great.

I can totally understand your hesitation about your local group. I bet there are women who face similar struggles though, and want to help you too. It's been great being plugged in to my local group but sometimes I think I don't make it to the face to face meetings because my whole day is already cancer cancer cancer and being in a whole room with it may just overwhelm me. I probadly should just go though and see and get it over with, lol.

xxyzed

Lindzanne - your arm tattoo looks really interesting . What's it a picture of? Wishing you the best for round 3 with minimal after effects. I've had the indredibly thinning cancer hair look going a the moment. I feel like a shedding dog.

Lindzanne

Thanks xxyzed! It's definitely my favorite (I have quite a few). It's a horse with an eagle above it, with lots of detail like flowers and rocks, some small crows, a little buffalo skull. It's modeled after the illustration from a book my mom used to read me, The Girl who Loved Wild Horses, by Paul Goble. It took a looooooong time. It's on my lymph node removed side, kinda sad there will be no more tattoos on that arm, I had plans! But I have other parts for those plans, lol. Here's a kind of better photo of it?

xxyzed

gorgeous Lindzanne and so much meaning behind it. I couldn't spot the buffalo skull. It is quite a pain with the limits now placed on our surgery side. I'm still trying to get the Lymphedema mostly in my hand sorted. It's probably the thing I'm finding the most annoying about this whole experience. Plenty of other body spots for you to use though

beachkitty

Hi,

I had a PET CT scan after a mastectomy for a recurrence of IDC. Also in lymph nodes this time so I started. chemo 7/25.

I was supposed to start chemo 7/19 and was all ready to go with my banana, magazine, slippers, port etc when an oncologist subbing for mine (he was on vacation) comes in and tells me the scan shows the cancer may be in my bones.

DON'T ACCEPT THE FIRST OPINION

I went back to my original oncologist who had a bone radiologist read the scan. She says small, low-grade areas are in soft tissue, not bone; and no matter, it does not appear to be malignant/metastasizing activity.

So I returned 7/25 for chemo. I will never forget that first opinion. I don't run away from reality even when it is harsh, but this was not reality. Make sure to investigate once you get results

Lindzanne

Ugh. Day 4 of round 3. As I worried, yet a little bit worse. More nausea, more fatigue. It's just rest and more rest for me right now. I'm so glad I have only one more AC left. And hope that the Taxol really is easier as I keep hearing.

Just checking in. Hope all are doing ok.

xxyzed

I'm day 5 of round 2 AC. It's my day 4 that I struggle most with so I'm hoping this rounds side effects are mostly behind me. Still two more to go before taxol and Herceptin so still a long way to go. I too hope taxol is easier as I can see the sheer length of treatment will get to me eventually

Shellywin16

Hi all

I am 33 years old, diagnosed 6/21 IDC had a million scans and had my first treatment on Tuesday 7/26. I am 5 days post first treatment and Im feeling fine except for getting tired and sleepy alot. My mom and grandmother had breast cancer but I seriously did think this is where I would be right now. I have faith that all of us that are going through this tough time will eventually kick this terrible illness butt and regain our lives. Hang in there ladies we got this. By the way reading all your post have thought me so much, Thank you.

Cwhitney

Welcome to all of the newbies. I am sitting here getting my second treatment of taxotere, perjeta, and herceptin. I was lucky that my first dose was manageable with few side effects. My hair started shedding like crazy on Friday so I had my husband shave it down. It's weird because I have been dying my hair blonde for years and now I have my natural brown. I haven't seen it in years. I hope everyone is hanging I there!

capecodlady

Hi everyone

Being new here and to BC, I have some questions about the abbreviations being used about your treatments. I had my first treatment (tx?) on 7/21 Taxotere,Herceptin,Perjeta, and Carboplatin. I had a reaction to the loading dose of Herceptin and was given Benedryl and then continued to finish the Herceptin. I have IDC with no lymph node involvement so I'm told. Chemo - surgery - radiation for 6 weeks daily and continue with Herceptin for a year. I had bad bone pain I thought form the nuelasta shot but many have reported this as constant SE? Was I wrong to think it ws from the shot. Any thoughts on the Claritin fix?? I am 70 years old and healthy, live alone but have a stong circle of women and 3 men. Thanks for any info you can give on the abbreviations. I have a wig ready and this is day 10 after 1st of 6 rounds of chemo so nothing is happening on my head just yet only IN my head.

Moderators

Dear capecodlady,

Welcome to the community. We hope that you will find support and information here that will help you along the way. Here is a link to the most common abbreviations used here on the boards and here is a link to additional information that might be useful to those who are new to the community. We hope that you will stay connected here. let us know via PM if you need additional help with navigation here. Good luck. The Mods

Lindzanne

Welcome capecodlady (and other newcomers). Right now I am doing a different type of chemo than you but can say that taking Claritin I think has had a big effect on the pain from Neulesta shots. My first round I had one day of mild pain and achy joints with the shots, my second round no pain at all. I take it every day, I have bad allergies anyway so its a win win. Everyone is different, but I've had lots of good feedback on it and my onco and her sub when she's out both recommend it highly! Hang in there, we can do this.

Lindzanne

Welcome capecodlady (and other newcomers). Right now I am doing a different type of chemo than you but can say that taking Claritin I think has had a big effect on the pain from Neulesta shots. My first round I had one day of mild pain and achy joints with the shots, my second round no pain at all. I take it every day, I have bad allergies anyway so its a win win. Everyone is different, but I've had lots of good feedback on it and my onco and her sub when she's out both recommend it highly! Hang in there, we can do this.