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Topic: Starting Chemo April 2020

Forum: Chemotherapy - Before, During, and After —

Regimens, side effects, and support from others going through chemo.

Posted on: Mar 25, 2020 02:16PM - edited Jun 20, 2020 12:21AM by jelloelloello

jelloelloello wrote:

Hey everyone! I'm starting the group for those of us starting chemotherapy in April 2020 (or the end of March, whatever works for you). Please join in!

I actually don't know my start date yet... I'm waiting to find out if I was approved for a clinical trial, which will determine my treatment plan and start date. The call/email should come this week, so I'm just anxiously waiting for it, but the plan is to start chemo next week. My treatment plan is 5-6 months of chemotherapy (AC-T), mastectomy plus lymph nodes, then radiation.

This is a super weird time to be dealing with cancer and the COVID-19/Coronavirus pandemic, but I think sharing the weirdness, frustrations, questions and positive thoughts with each other will be helpful.

Thanks! Much aloha!

Jess

-------------------------

APRIL 2020 ROLL CALL

Username (name we can call you) - [location] - known or likely start date for chemo

  • ARmom4 (Kelly) - [Arkansas, USA] - 3/27 / 4/17
  • AuthorSpot (Stacey) - [Illinois, USA] - 3/31
  • bazcla (Claud) - [Texas, USA] - 5/14
  • Bon43 (Bonnie) - [Nova Scotia, Canada] - 4/6
  • BostonGal (Allie) - [Massachusetts, USA] - 4/16
  • ByHisGraceTwice ( j ) - [Texas, USA] - 4/1
  • CCgirl (Nan) - [Massachusetts, USA] - 5/4 (but we're keeping her in the April family!)
  • CocoB122 - [Kansas, USA] - 4/?
  • Dawn1027 (Dawn) - end of April
  • Debra1111 (Debra) - 4/15
  • Dup403 - [Alberta, Canada] - 3/31
  • Emmyvan - [New York, USA] - 4/2
  • Faith2020 (Faith) - [Texas, USA] - 4/9
  • HI109 (Emma) - [New York, USA] - 3/31
  • hnsquared (Heather) - [Colorado, USA] - 4/1
  • hog_co-pilot (Les) - 4/30
  • Hurricaneblair (Erin) - [Illinois, USA] - 4/9
  • ipenelope (Katie) - [Minnesota, USA] - 4/20
  • JavaJana (Jana) - [Texas, USA] - 4/8
  • jelloelloello (Jess) - [California, USA] - 4/2
  • Jettie - 3/11 (started in March but there's room for everyone in the April family!)
  • JustyneF (Justyne) - [Illinois, USA] - 4/6
  • LiseC (Lise) - [Florida, USA] - 4/10
  • Molly5678 (Molly) - 4/15
  • Mudstick - 4/22
  • NicoleRod (Nicole) - 4/23
  • Oldest4Sis (Michelle) - [Delaware, USA] - 4/2
  • pennythepest (Penny) - 1/3... then a break... then started again in May
  • pjb61 - [Illinois, USA] - 4/20
  • Shareliz54 - [Nova Scotia, Canada] - 4/24
  • ShellyRM (Shelly) - [California, USA] - 4/22
  • Smitty1963 - 4/24
  • Sueshe55 (Robin) - [Florida, USA] - 5/26
  • Sugar77 (Sherri) - [Mississauga, Canada] - 4/3
  • sunandsea (Vilija) - [California, USA] - 4/30
  • wahoomama87 (Kris) - [Georgia, USA] - 4/10
  • zee72 (Zarin) - [Dubai, UAE] - 4/7

*** NEW! Join our private Facebook group! ***

If you're interested in connecting with us on Facebook, send a PM to wahoomama87 (Kris). Be sure to give her your email address that you use for FB. That's the only way she can "find" you to invite you, since we're not "friends" on there (yet)!

Dx 2/13/2020, IDC, Right, 6cm+, Stage IIIA, Grade 3, ER+/PR+, HER2- (FISH) Immunotherapy 4/2/2020 Chemotherapy 4/2/2020 AC + T (Taxol) Radiation Therapy Surgery Lymph node removal: Underarm/Axillary; Mastectomy: Right
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Apr 9, 2020 11:26AM JavaJana wrote:

Hello everyone! I had a VERY long day yesterday, and I think that is more the reason for feeling so wiped out this morning, not just due to the chemo. We live almost 3 hours away from MD Anderson in Houston, and we were gone for 20!!! hours yesterday. And since they have locked down the buildings to visitors, hubby could not hang out in waiting areas, so pretty boring for him lol.

It was scheduled to be a whole day affair anyway, with labs, chest xray, echo, doc visit plus chemo session #1 (approx. 5 hrs- future sessions should be less since I tolerated the slowed down infusions of Perjeta and Herceptin).

The infusion area was running late, so I was pulled in two hours late, and then there was an issue with my port causing yet another 2 hour delay. They wouldn't access my port without someone "upstairs" signing off since it wasn't placed there. Even though that's what the xray was for lol. Annoying. Navigating healthcare is hard enough with rules and policies and communication breakdowns that are all too common.

Anyway, we got started, all infusions went smoothly. Nurses and techs were very attentive - it turns out they provide a light meal which meant I didn't have to eat the protein bar I brought lol. They have private rooms too, which I like.

I received the Neulasta Onpro device on my stomach, so I don't need to go back today for a shot yay! It was a bit more painful than a needle stick, etc. but just for a second. Totally worth it though.

I will say I've had my port accessed twice without numbing cream, and it is no worse than a finger stick for me. So for those of you new to ports, don't worry too much if you don't have it, although you can easily get some from your doc. It is mostly just weird having it in lots of ways once the bruisy healing is over with. It is definitely an alien being inside your body!

I hope y'all have a wonderful day!

Xgeva 9/2/2020. History: 2 Borderline Serous Ovarian Carcinoma TAH/BSO, 0/15 nodes - 2/18/20. Benign Papilloma/ADH Left breast, excisional biopsy 10/11/2016 Dx 10/1/2019, IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (IHC) Dx 10/23/2019, LCIS/DCIS, Right, 0/1 nodes Surgery 11/18/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right Dx 3/25/2020, IDC, Stage IV, metastasized to bone, 0/2 nodes Chemotherapy 4/7/2020 Taxotere (docetaxel) Targeted Therapy 4/7/2020 Perjeta (pertuzumab) Targeted Therapy 4/8/2020 Herceptin (trastuzumab) Hormonal Therapy 8/12/2020 Femara (letrozole)
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Apr 9, 2020 11:34AM - edited Apr 9, 2020 11:35AM by Molly5678

Hi! I just joined today. I was diagnosed last month but got my final results yesterday and am feeling overwhelmed. For starters, I am 70 and have been lucky to have been pretty healthy most of my life. I discovered a breast lump recently and started the usual procedures. I got mammograms, was biopsied, had a PET scan and a brain MRI. They found that the breast cancer is in numerous lymph nodes, pelvic bones, my spine, and in other bones. They think I might have some small spots in my lungs. I'm a triple positive.

I'm devastated. I thought I might end up with a regular mastectomy and find that it's everywhere. They're planning my chemo and I am supposed to start next week. It's probably going to be Taxol plus Herceptin and Perjeta. After that, I'm scheduled to get targeted radiation and, later on, hormone blockers.

Everyone has been very nice and my grown kids are supportive. It's just that I've always been the strong one in the family. After my husband died, I was the one everyone relied on. I'm not really a crier but I can't seem to get myself pulled together. And I'm so angry with myself for being such a baby. I'm so lucky that I've managed to make it this far. There are so many people who have to face this while they still have full time jobs and young children.

I think part of it is that the isolation due to the virus has begun to get to me. If I was able to be out and involved with my grandchildren, I'd be less likely to focus on myself. I never thought I'd say this but I'd give anything to just be walking through the grocery store like normal. And the kinds of support groups that my oncologist has are not in place now. I'm just grateful to find this group. It has meant a lot to me today to be reading here.

Dx 3/2020, IDC, Right, Stage IV, metastasized to bone, Grade 2, ER+/PR+, HER2+
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Apr 9, 2020 11:52AM JavaJana wrote:

Molly, I'm so sorry for you, we all know quite a bit about how this all feels! This forum is a wealth of information and support, and we are not alone!

Xgeva 9/2/2020. History: 2 Borderline Serous Ovarian Carcinoma TAH/BSO, 0/15 nodes - 2/18/20. Benign Papilloma/ADH Left breast, excisional biopsy 10/11/2016 Dx 10/1/2019, IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (IHC) Dx 10/23/2019, LCIS/DCIS, Right, 0/1 nodes Surgery 11/18/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right Dx 3/25/2020, IDC, Stage IV, metastasized to bone, 0/2 nodes Chemotherapy 4/7/2020 Taxotere (docetaxel) Targeted Therapy 4/7/2020 Perjeta (pertuzumab) Targeted Therapy 4/8/2020 Herceptin (trastuzumab) Hormonal Therapy 8/12/2020 Femara (letrozole)
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Apr 9, 2020 12:24PM Molly5678 wrote:

Thank you.

My husband died of metastatic prostate cancer. He got a lot of years that we didn't think he'd get but we did spend a great deal of time in hospitals and doctors' offices. When he had his first PET scan he said he "lit up like a Christmas tree". When I saw my PET scan yesterday -- you guessed it -- I lit up like a Christmas tree too. There's way too much deja vu going on...

Reading here makes me understand that I need to see myself as a survivor -- not a victim. Honestly, just reading here helps.

Dx 3/2020, IDC, Right, Stage IV, metastasized to bone, Grade 2, ER+/PR+, HER2+
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Apr 9, 2020 12:47PM wahoomama87 wrote:

Heather - welcome! Thanks for sharing about your chemo and your port. I'm starting chemo tomorrow (Erin!) with my brand new port from yesterday. We'll see how that feels. Definitely going to be using that Lidocaine cream.


Erin - I ordered two really soft shirts off Amazon, because someone told me to wear something that buttons down the front. And I don't own anything that is not work clothes like that, and even a small amount of those.


Kris

Dx 3/23/2020, IDC, Right, 2cm, Stage IIB, Grade 2, 1/4 nodes, ER+/PR+, HER2+ Chemotherapy 4/10/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 4/10/2020 Herceptin (trastuzumab) Targeted Therapy 4/10/2020 Perjeta (pertuzumab) Surgery 8/24/2020 Lymph node removal: Right, Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left
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Apr 9, 2020 12:49PM wahoomama87 wrote:

Molly -

So sorry to hear all this - but you are definitely not alone. This group has been amazing with me so far.

Kris


Dx 3/23/2020, IDC, Right, 2cm, Stage IIB, Grade 2, 1/4 nodes, ER+/PR+, HER2+ Chemotherapy 4/10/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 4/10/2020 Herceptin (trastuzumab) Targeted Therapy 4/10/2020 Perjeta (pertuzumab) Surgery 8/24/2020 Lymph node removal: Right, Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left
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Apr 9, 2020 01:03PM Moderators wrote:

Dear Molly5678,

Welcome to the BCO community. We are so sorry for all that you have been through from your husband's death to Prostate Cancer to your own new diagnosis of breast cancer and the isolation that everyone is dealing with right now due to the Covid-19 virus. We are so glad that you reached out and joined us. This is a community that is full of support and a lifeline for so many, especially right now during this very trying time. Please stay active here keep us all posted on how treatment goes as you get started next week. Please ask your questions and feel free to private message us "the Mods" if we can help you navigate your way around, find resources or links to helpful information or steer you towards a topic that might be a support.

The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Apr 9, 2020 01:12PM zee72 wrote:

welcome to all the newcomers on this group. As read through the posts, I’m picking up so much useful information and realize that so much of what I’m feeling, everyone is going through too. It’s wonderful to have this space to share our experiences.

I went to work today...it was 2 days after my first chemo. I work as a physiotherapist, and we are currently doing only telephone consults. I was there only for 5 hours and was totally wiped out! I was really taken aback! How am I going to cope with weekly sessions for the next 16 weeks! Not sure I’m feeling this way due to having Taxol, carboplatin, herceptin and perjeta all together as my first session? Also still quite bruised with the port. Guess it’s been only 3 days!

Kris, good luck with your first chemo!

Zarin

Dx 3/23/2020, IDC, Right, 2cm, Stage IB, Grade 3, ER+/PR-, HER2+ (FISH) Chemotherapy 4/6/2020 Carboplatin (Paraplatin), Taxol (paclitaxel) Targeted Therapy 4/6/2020 Herceptin (trastuzumab) Chemotherapy 4/6/2020 Chemotherapy
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Apr 9, 2020 03:33PM AuthorSpot wrote:

Heather— our stories are remarkably similar! That’s exactly how everything went down for me as well, apparently only a week after you. Strange, huh? I’m also close to your age, I turned 50 in December. I’m having the same treatment, except they started the AC first since we live in a rural area and have very few Covid cases. It’s also very easy for me to stay isolated. Don’t feel bad for crying. The whole thing is overwhelming and exhausting. And scary. We’ve endured a lot over the years in my family—major illnesses, disabilities, horrific accidents—so my go to attitude when something bad happens is sort of an “oh, this again.” But I had several meltdowns during the first few weeks. It’s okay to not always feel like a badass. That’s what we’re all here for.

Molly—that’s my daughter’s name! ❤️ I understand completely about always being the rock. I’m my family’s go to person for everything. And knowing that I will have to relinquish some of that threw me for a loop. I felt a little untethered and unsure of who I am, if not that person. Does that make sense? I guess we’ll figure it out as we go along. My condolences on your husband. And I’m sorry you “lit up like a Christmas tree.” My lungs lit up.

Zee—lady, you have my utmost admiration for working through this. My first few days I was lucky to get off my couch. I hope you can continue to do so.

Everyone else—hugs.

As for me, I’m feeling the best today that I have in a while. The antibiotics must have kicked in on the UTI, and the rinse is helping the mouth sores. I got my genetic testing back finally, and have some very rare gene mutation that actually puts me at risk for a variety of cancers, but is NOT usually associated with breast cancer. My poor doctor was bewildered. I asked if the port incident had taught him nothing. My body seems to delight in being a medical anomaly. 🤪 He’s scheduling a teleconference appointment with a geneticist at Barnes in St. Louis. 🤷🏻♀️

❤️Stacey

Dx 3/2/2020, IDC, Left, 6cm+, Stage IV, metastasized to lungs, Grade 3, ER-/PR-, HER2-
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Apr 9, 2020 08:59PM LiseC wrote:

LiseC (Lise) Florida 4/10

Diagnosed at 42, married 13 years and have a 4 year old son Dx 2/23/2020, IDC, Left, 2cm, Stage IIIA, Grade 3, ER+/PR+, HER2- Chemotherapy 4/10/2020 AC + T (Taxol) Hormonal Therapy Zoladex (goserelin)
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Apr 9, 2020 10:00PM hnsquared wrote:

Erin and Kris...I’ll be thinking about you tomorrow. You will be so happy to have the first one done and know what to expect. Hope you sleep well tonight.

Molly...I’m so sorry. This group is so supportive...just let us know what you need. It’s okay to not always be the strong one and I bet your kids will step up for you.

Stacey...I wish I was doing AC first to get it over first. Although my MO says everyone is do different regarding side effects and how they handle treatment. I turn 50 in June and was planning a celebratory vacation prior to diagnosis and COVD19. Life has different plans. Where do you live? I only ask because I see your doctor is consulting with Barnes Jewish and I’m born and raised in St Louis...my ❤️ Is still in the Midwest.

Heather

Dx 2/20/2020, IDC, Left, Stage IB, Grade 2, ER+/PR+, HER2- Chemotherapy 4/1/2020 AC + T (Taxol) Surgery 9/21/2020 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Radiation Therapy 11/11/2020 Whole-breast: Breast, Lymph nodes, Chest wall Targeted Therapy Herceptin (trastuzumab)
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Apr 9, 2020 10:58PM Hurricaneblair wrote:

CHEMO DAY NUMBER ONE OF SIX IS COMOLETE AND IN THE BOOKS!!

a message of encouragement from my day:

All done and it went so much more smoothly than I thought...almost like...did they put anything in those IV bags??

I had a blessing angel show up...one of my Weight Watcher members came to receive a treatment for her breast cancer. She sat next to me and we chatted pretty much the whole time she was receiving her treatments! Made that hour and a half go by in a snap!!💗

It went so much better than I anticipated! At first it felt like I was being dropped off for my first day of Kindergarten. Steven prayed for me in the car, walked me in and we chatted with the receptionist. Then he told me I would do well today and I opened the door to go back with tears welling in my eyes! But praise the Lord that the PRE- medications did their job for me today. My nurse was very kind and encouraging...gave me a port pillow, several caps and some boot legged gloves to use. She says to anticipate the meds wearing off by Saturday/Sunday, and I might feel more of the chemo side effects...I know it’s coming.😢 Steven and I went on a short walk before dinner because it was so lovely today.

Kris....how was your day? How is your port?

Praying for you all...Erin

Dx 3/25/2020, ILC/IDC, Right, 3cm, Grade 3, ER+/PR+, HER2+ (IHC) Targeted Therapy 4/9/2020 Perjeta (pertuzumab) Chemotherapy 4/9/2020 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Apr 10, 2020 05:35AM Dolly2019 wrote:

Hi guys,

I am returning to this forum after a four year break. I myself was diagnosed with breast cancer four years ago. Stage 2a. I did the chemo and Rads and Tamoxifen.

Sadly my mum has just been diagnosed with Er+, PR+ and Her2+ breast cancer and will be starting chemo in the next two weeks. She is 80!

I’m concerned about the Her2 thing. It’s a little more aggressive right?

But am more concerned because on her CAT scan some lymph nodes in her stomach showed up. The doctor said she didn’t think this was necessarily cancer but that they would scan in another six weeks to check and see if they had gone or not. I can’t really remember what she meant by that. Anyone able to help me here? She seemed to be suggesting that if the nodes in the armpit and stomach both went after chemo then it was likely it was cancer???? (I’m not sure) But that if the armpit ones went and tummy ones didn’t then the stomach ones were maybe scar tissue or infection? She also said the cancer doesn’t tend to take that sort of pathway. Her bone scan was completely clean. Is that what she means? Isn’t it normally the bones it goes into furst

My mum is getting chemo first. The tumour is only 2cm but the Her2 means chemo first. She is also getting perjeta and Herceptin. Any of you had this trio? What should she expect? She’s getting it once a week for 12 weeks so it’s a little gentler on her.

I’m so grateful for any answers. I’m sorry we all need to be here at all. I found this forum was my lifeline four years ago and I made wonderful friends all over the world who I’ve even met up with now.

D

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Apr 10, 2020 08:46AM zee72 wrote:

Hi Dolly2019, sorry to hear about your mom’s diagnosis. Seems like your mom and I are on a similar protocol. Weekly chemo of Taxol and carboplatin and every third week herceptin and perjeta. The chemo will be once a week for me for 17 weeks. I had my first chemo on 7th april. Not sure what I was expecting ! was quite wiped out the last few days. The thought of going through this weekly is wearing me down. But having said this, I am feeling a lot better today

Good luck to your mom! And best wishes to you!




Dx 3/23/2020, IDC, Right, 2cm, Stage IB, Grade 3, ER+/PR-, HER2+ (FISH) Chemotherapy 4/6/2020 Carboplatin (Paraplatin), Taxol (paclitaxel) Targeted Therapy 4/6/2020 Herceptin (trastuzumab) Chemotherapy 4/6/2020 Chemotherapy
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Apr 10, 2020 09:23AM - edited Apr 10, 2020 09:28AM by BostonGal

JustyneF,

We are in the thick of it now...I am glad things seemed to go reasonably well for you. May they stay that way!

I love all the details you provide and it is incredible you are walking so much. "They" say that can really help...

I am a little afraid to go out at this point and I have not even started chemo!

Dx 1/2020, ILC, Right, 4cm, Stage IB, 4/4 nodes, ER+/PR+, HER2- Surgery 8/31/2020 Lymph node removal: Right Surgery Lymph node removal: Right, Sentinel; Mastectomy: Right Chemotherapy AC + T (Taxol) Radiation Therapy
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Apr 10, 2020 09:30AM BostonGal wrote:

Hello Dolly2019!

I send my best wishes to you and your mother!

BostonGal

Dx 1/2020, ILC, Right, 4cm, Stage IB, 4/4 nodes, ER+/PR+, HER2- Surgery 8/31/2020 Lymph node removal: Right Surgery Lymph node removal: Right, Sentinel; Mastectomy: Right Chemotherapy AC + T (Taxol) Radiation Therapy
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Apr 10, 2020 10:08AM Dolly2019 wrote:

hi guys,

Thanks for reading my post! Zee I hope your first chemo has not caused too much tiredness. When I did my treatment four years ago I was mostly tired at the very end of it all but then I was doing a different chemo and over a three week slot. What I will say and I’ve been telling my mum is that I was barely sick in the chemos that I did. Just sick on day one of first one. It shocked me how easy the chemo bit was.

I cold capped for 5 months and that, I have to say, was the worst of all of it!

My mum is apprehensive about this chemo treatment but is aware that it’s needed to stop it in its tracks.

Zee.... do you know why some Her2 women get perjeta AND herceptin and why some only get one of them?

Are you using a port or vein?


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Apr 10, 2020 11:37AM BostonGal wrote:

Welcome LiseC!

BostonGal


Dx 1/2020, ILC, Right, 4cm, Stage IB, 4/4 nodes, ER+/PR+, HER2- Surgery 8/31/2020 Lymph node removal: Right Surgery Lymph node removal: Right, Sentinel; Mastectomy: Right Chemotherapy AC + T (Taxol) Radiation Therapy
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Apr 10, 2020 02:23PM AuthorSpot wrote:

Heather— I’m about thirty minutes north of Quincy, IL. Roughly 2 1/2 hours from St. Louis. Been there many times! My OC splits his time between Quincy and Barnes. He’s amazing. When this is all over we should meet up in St. Louis for a celebration! I had a lot of travel plans this year as well, including a speaking engagement at a conference in July. But this too shall pass, and make what comes next even sweeter. ❤️

Has anyone else cut their hair yet? I chopped mine off into this short cut I’d been too scared to try right after I got my diagnosis. I loved it! I do love the “no f**ks given” attitude cancer has bestowed upon me. But my head was starting to itch really badly this week, so I had my husband buzz it all off last night. I spent the whole time giggling because the electric trimmer tickled. I don’t think it’s a look I’d choose for myself, but the relief of itchiness and the absolute ease of not having to do my hair is worth it!

❤️ to you all.

Dx 3/2/2020, IDC, Left, 6cm+, Stage IV, metastasized to lungs, Grade 3, ER-/PR-, HER2-
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Apr 10, 2020 07:01PM BostonGal wrote:

Stacey

I had very long hair - down to waist. Always long. I cut about twelve inches off about a week ago. I may cut more soon. I might look online to see how to do a "pixie" cut. I am looking into how to make head coverings now.

BostonGal

Dx 1/2020, ILC, Right, 4cm, Stage IB, 4/4 nodes, ER+/PR+, HER2- Surgery 8/31/2020 Lymph node removal: Right Surgery Lymph node removal: Right, Sentinel; Mastectomy: Right Chemotherapy AC + T (Taxol) Radiation Therapy
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Apr 10, 2020 07:48PM wahoomama87 wrote:

Erin - I swear we are soul sisters! CHEMO #1 of 6 DONE AND DONE! I also feel pretty good. It was a long day because they took everything slowly, but the nurses were amazing. My husband also left me at the door - but through texting he and my siblings and our good friends prayed me through each and every part. I was sending them a text when something new started, with a specific thing to pray for. It also is not lost on me that Chemo Day 1 is Good Friday.

Stacey and Boston Gal - my hair was already short, but it's pretty fine and I feel quite confident that I will lose it! I had my hairdresser cut it really short last week, so that my husband can shave my head easily. I already have lots of hats and scarves - I bought a few and then friends that have been through this have given me some. Now I just need to learn how to draw eyebrows if I lose those! I'm so inept at makeup, but I'll have to learn that.

We'll see what else kicks in over the weekend and early next week.

Kris


Dx 3/23/2020, IDC, Right, 2cm, Stage IIB, Grade 2, 1/4 nodes, ER+/PR+, HER2+ Chemotherapy 4/10/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 4/10/2020 Herceptin (trastuzumab) Targeted Therapy 4/10/2020 Perjeta (pertuzumab) Surgery 8/24/2020 Lymph node removal: Right, Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left
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Apr 10, 2020 08:27PM - edited Apr 10, 2020 09:52PM by CCGirl

Hi! I'm so glad to find this group. This whole experience is really scary, and doing so much of it alone makes it even worse.

I'm recovering from a double mastectomy (surgery on March 25), am triple positive and this is my second round with breast cancer. Since my first round was in 1998 (at the age of 45), I had no lymph nodes under my left arm to test and I've already had radiation so won't be having that again. (I had the 1998 surgery a few months before they started doing sentinel node testing.) Oncologist said this is an unusual situation (lucky me!) and doesn't know what chemo protocol they'll be using yet. The dye injected by my surgeon into the tumor before it was removed didn't go anywhere and the PET scan I had two days before surgery was clear. I guess that's good. I live about 65 miles from Boston on Cape Cod. The COVID cases are on the upswing, and my oncologist wants to wait a few weeks before starting chemo. I'm nervous about waiting, and also nervous about starting chemo. Has anyone else had this situation with the lymph nodes? And am I being nervous about nothing regarding having to wait to start chemo?

Nan

Dx 11/22/1998, IDC, Left, 1cm, Stage IA, Grade 1, ER+ Surgery 11/22/1998 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 2/1/1999 Whole-breast: Breast Hormonal Therapy 3/1/1999 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 3/11/2020, IDC, Left, 2cm, Stage IIA, Grade 2, ER+/PR+, HER2- (FISH) Surgery 3/25/2020 Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 5/4/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Apr 11, 2020 01:35AM zee72 wrote:

Dear Dolly2019,

My understanding is that herceptin is used alone for low risk and less aggressive her2+ and herceptin and perjeta is used together for the faster moving her2+. Do you happen to know what the ki 67 score was for your mom? This is the growth rate of the cells. Mine was 61%. I have a port inserted so everything will be administered through the port.

Today I feel a lot better. A lot more energy. I’m struggling to get my walks in due to the strict lockdown we have in Dubai. Luckily I stay in an independent house so can spend some time in the garden. The simple joys of life that we all are craving for...!

Zarin

Dx 3/23/2020, IDC, Right, 2cm, Stage IB, Grade 3, ER+/PR-, HER2+ (FISH) Chemotherapy 4/6/2020 Carboplatin (Paraplatin), Taxol (paclitaxel) Targeted Therapy 4/6/2020 Herceptin (trastuzumab) Chemotherapy 4/6/2020 Chemotherapy
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Apr 11, 2020 01:46AM - edited Apr 11, 2020 01:49AM by Jettie

Due to side effect my perjeta was discontinued after the first round, but has been a lot better on just herceptin

Winking

Dx 2/14/2020, IDC, Right, 5cm, Stage IIIB, Grade 2, ER+/PR+, HER2+ (IHC) Chemotherapy 3/11/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 3/11/2020 Herceptin (trastuzumab) Targeted Therapy 3/11/2020 Perjeta (pertuzumab) Surgery 8/11/2020 Lymph node removal: Right; Mastectomy: Right Radiation Therapy Whole-breast: Breast
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Apr 11, 2020 06:18AM Dolly2019 wrote:

Zee,

Thank you for that info. No I’m not sure what the Ki67 is. Is that the same as grade? Doctor just said it was high grade and Her2. I think I just took that and ran with it instead of delving in more in front of my mum.

She is deeply worried about these lymph nodes in the stomach though. They lit up. Doctor says it could be for a number of reasons not linked to BC but that they’d scan her again in another 6 weeks. It’s all a little worrying.

I’m glad you have a lovely garden to go and sit in. This Covid thing will never make me question going to my work again!!!

I am from Scotland so we don’t have good enough weather yet, for sitting out. I hope you’re managing to keep in good spirits during chemo. It’s a boring road. I did it four years ago and it was boredom that drove me insane more than anything.

Enjoy the sun today

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Apr 11, 2020 07:32AM zee72 wrote:

Dolly2019,

The grade is calculated by adding up a few scores. The grades are from 1-3, grade 3 being the highest. The ki 67 is a separate score that is a percentage of how quickly the cells multiply. The grade and ki 67 score aren’t necessarily directly linked. In other words, one can have a grade 3 tumor but with a low multiplication rate.

Good luck with your mom with the future rescan!

It is all so stressful. Especially for all us with the covid situation. The next few months will be trying times. Take care everyone and keep well.

Zarin

Dx 3/23/2020, IDC, Right, 2cm, Stage IB, Grade 3, ER+/PR-, HER2+ (FISH) Chemotherapy 4/6/2020 Carboplatin (Paraplatin), Taxol (paclitaxel) Targeted Therapy 4/6/2020 Herceptin (trastuzumab) Chemotherapy 4/6/2020 Chemotherapy
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Apr 11, 2020 08:33AM BostonGal wrote:

Hi Nan!

I'm glad you found the group. I am a fellow MA resident and am in limbo as to my chemo start date.

BostonGal...

Dx 1/2020, ILC, Right, 4cm, Stage IB, 4/4 nodes, ER+/PR+, HER2- Surgery 8/31/2020 Lymph node removal: Right Surgery Lymph node removal: Right, Sentinel; Mastectomy: Right Chemotherapy AC + T (Taxol) Radiation Therapy
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Apr 11, 2020 10:49AM Sugar77 wrote:

CCGirl (Nan) - Sorry to hear you are going through this again and so glad you found us. Our stories are similar. Regarding the lymph nodes, I had a sentinel node biopsy done in 2009. It was rather new at the time and not many surgeons had a lot of experience with it. Mine did and I had two nodes removed. Fast forward exactly 10 years, a new primary in the same irradiated breast. I had a sentinel node biopsy done again and three were removed. Mapping for the procedure was difficult because the path was disturbed in 2009. I just started chemo last Friday. It's like deja vu but now I'm older and am still recovering from an emergency surgery to remove my right reconstruction.

Everyone - sounds like many of us have at least one treatment under our belt or are about to have it in the next week or so. My hair will likely start falling out in the next week or two. I will be having my hair buzzed before it falls out. Those who are planning to shave your heads, a piece of advice is not to shave it right to the scalp. The medical wig store I went to strongly advised to buzz the hair down to about a 1/4 to 1/2 inch instead. They would normally do it for me but since everything is closed for COVID, this was their advice. I think on a hair shaver, it's a #2 or #3.They said shaving right off smooth to the scalp can cause potential issues with the follicles.

Surgery 9/24/2009 Lumpectomy: Right Dx 10/27/2009, IDC, Right, <1cm, Stage IA, Grade 3, 0/2 nodes, ER-/PR-, HER2- Chemotherapy 12/6/2009 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx 12/5/2019, IDC, Right, 3cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 1/26/2020 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 4/2/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 11, 2020 11:06AM Bon43 wrote:

Hi guys,

I had a little bit to catch up on. I’ve been away for a few days I had some issues with medication causing constipation and oh it was painful. I got other medication (senokot) from the pharmacist and now all seems to be back to normal thank goodness. I have had headaches, has anyone had headaches? All of my hair follicles hurt so I’m thinking that may be directly related to my headaches?

Kris, I am horrible with that stuff too and was trying to find something online as a “how to draw eyebrows”. I came up with an idea of cutting out my current eyebrow shape with paper so I have something to go by when they do fall out. 🤷🏻♀️ I’m not sure it will work but I thought a template might be a good start - haha!

I hope everyone is keeping well.

Bonnie

Bonnie Dx 3/10/2020, IDC, Right, 3cm, Stage IIB, ER-/PR-, HER2+ Chemotherapy 4/6/2020 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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Apr 11, 2020 11:43AM BostonGal wrote:

Bonnie and Sherri - you are so clever. I would add that you can refer to photos to recreate eyebrows. In my case, it might be a chance to improve them because with menopause, my eyebrows and lashes became much thinner...

Question...I don't have a way of shaving my head and was thinking of a very much shorter or even a pixie cut...would either of you or anyone know how or even if I should do that? I still have long hair even though I cut off about 12 inches..it is still just a little bit past my clavicles..I just don't know which way is best to manage the expected hair loss...

Thank you

BostonGal...I should have a different name...

Dx 1/2020, ILC, Right, 4cm, Stage IB, 4/4 nodes, ER+/PR+, HER2- Surgery 8/31/2020 Lymph node removal: Right Surgery Lymph node removal: Right, Sentinel; Mastectomy: Right Chemotherapy AC + T (Taxol) Radiation Therapy

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