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Topic: Starting Chemo May 2020

Forum: Chemotherapy - Before, During, and After —

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

Posted on: Apr 23, 2020 04:16PM - edited Jul 1, 2020 11:31PM by Angelanotangie

Angelanotangie wrote:

Hello everyone, please feel free to join. I didn't see a post for this yet so I thought I'd start one. This is actually my very first post!

I had my surgery 3 weeks ago today. I just found out yesterday that I will start chemo on 5/15. I'm doing 1 session every two weeks, with 8 weeks of Taxol followed by 8 weeks of Adriamycin and Cytoxan. Then (most likely) radiation and 10 years of hormone therapy.

I was crushed when they told me. I had been trying to prepare myself for it since they wanted me to come in person for my appointment (most of my appointments have been on the phone since Covid). My Onco score was only 14 but due to my age, LN involvement and high grade tumor, the cancer is likely to come back.

I searched for this topic because I wanted to know how people are handling the hair loss with the Covid restrictions. At my hospital they have a Positive Image center where they would normally do haircuts/shaves, wig fitting, makeup application, bra fitting/prosthetics etc but now their services are very limited. I called to make an appointment to try on wigs and scarves and they said they aren't doing that right now. All throughout this, anytime I feel powerless over my situation, I ask “what CAN I do?". I thought that facing the hair loss head on (no pun intended) was something but now it's not an option. I guess since I won't lose my hair immediately I may still be able to do this before it happens, but I really don't know how long this (Covid) is going to last! Like many have said in other forums, I'm also sad that no one can go with me to my appointments. I went through my surgery alone (while at the hospital) and all my other appointments alone. It's been hard, to say the least.

Hope to see more of you soon. Thanks for reading.

Angela

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

MAY 2020 ROLL CALL

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

  • Suz_eee (Suzy) - [California, USA] - 5/7
  • KeepingCalm (?) - [Maryland, USA] - 5/7
  • UnrealTarHeel (Judy) - [North Carolina, USA] - 5/12
  • PJAL (Paula) - [Maryland, USA] - 5/14
  • AngelanotAngie (Angela) - [California, USA] - 5/15
  • Arizonasurvivor42 (Christie) - [Arizona, USA] - 5/15
  • Roxiegirl (Sue) - [Oregon,USA ] - 5/21
  • Snowflake22 (Julie) - [Ontario, Canada] - 5/22
  • Sabbymama (Sabrina) - [Belgium, Europe] - 5/26
  • b00pster (Christine) - [California, USA] - 5/28
  • Cali_aargh (?) - [California,USA] - 5/29
  • Camama3 (Laurie) - [California,USA] - 6/3
  • Smichaels11 (Shauna) - [Pennsylvania,USA] - 7/1
Dx 2/3/2020, DCIS, Right, Stage 0, Grade 3, ER+/PR+, HER2- (IHC) Dx 2/17/2020, IDC, Right, 3cm, Stage IIA, Grade 3, 2/11 nodes Surgery 4/2/2020 Lymph node removal: Right; Mastectomy: Right Chemotherapy 5/15/2020 AC + T (Taxol) Radiation Therapy 9/15/2020 Breast Surgery Prophylactic mastectomy: Left; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy
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May 2, 2020 01:00PM Angelanotangie wrote:

Does anyone know how to do the Roll Call that some of the other "Starting Chemo..." topics have going? I think it will be helpful for us so that we can keep everyone straight and be as supportive as possible.

Thank you to those of you that are a little further in the process.

Dx 2/3/2020, DCIS, Right, Stage 0, Grade 3, ER+/PR+, HER2- (IHC) Dx 2/17/2020, IDC, Right, 3cm, Stage IIA, Grade 3, 2/11 nodes Surgery 4/2/2020 Lymph node removal: Right; Mastectomy: Right Chemotherapy 5/15/2020 AC + T (Taxol) Radiation Therapy 9/15/2020 Breast Surgery Prophylactic mastectomy: Left; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy
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May 2, 2020 01:01PM - edited May 7, 2020 05:33PM by Angelanotangie

This Post was deleted by Angelanotangie.
Dx 2/3/2020, DCIS, Right, Stage 0, Grade 3, ER+/PR+, HER2- (IHC) Dx 2/17/2020, IDC, Right, 3cm, Stage IIA, Grade 3, 2/11 nodes Surgery 4/2/2020 Lymph node removal: Right; Mastectomy: Right Chemotherapy 5/15/2020 AC + T (Taxol) Radiation Therapy 9/15/2020 Breast Surgery Prophylactic mastectomy: Left; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy
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May 2, 2020 01:07PM UnrealTarHeel wrote:

Hi, @Angelanotangie: For the "roll call," I think you need to go back and edit your original post (the one that launched this thread) to include a list of everyone here. I can help you gather the info if you need, but you are the only one who can update the post.

Dx 2/28/2020, DCIS/IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2+ Surgery 3/27/2020 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 5/12/2020 Taxol (paclitaxel) Targeted Therapy 5/12/2020 Herceptin (trastuzumab) Radiation Therapy 8/25/2020
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May 2, 2020 02:49PM wahoomama87 wrote:

Bazcla -


This is what I posted above:

Someone "gifted" me with the gloves and foot covers for icing (they got them from another breast cancer friend). I use it specifically for Taxotere - since that's the chemo that causes the neuropathy and the nail issues. I put them on 15 minutes before the infusion, keep them on during, and for 15 minutes after. It's my 3rd of 4 drugs that I get during my infusion, so I don't have to stay longer, thankfully. They are called Elasto-Gel - the hand ones look like Giant oven mitts and the feet are booties. My first infusion was an hour with the Taxotere, because they slow-drip it the first time, so they actually ended up unfreezing part way through. I shoved ice packs down in them and put my feet on some others (I brought them all with me in a cooler to keep them cold) and using that through the end. Worked great - at least the first time. I found the hand mitts on Amazon: https://www.amazon.com/Elasto-Gel-Hand-Mitt-Cold-Therapy/dp/B01M5JPCYD

I just put them in the freezer and leave them there, and take them out and put them in the cooler when I'm leaving for chemo. Hope that helps.

In terms of the time - they definitely don't stay cold the entire 90 mins. So I also bring some ice packs that stay frozen most of the day. I use those to keep the gloves and booties cold in the cooler. They last about an hour, maybe? Then I take my feet out of the booties, put my socks back on and put ice packs on top of the booties and just rest my feet on those. I take the cloth insert out of the mitts and keep that over my hand, put ice packs in the palm of my hand and slide my hands back in the mitts. That then keeps it cold through the end. So it's a system, but it seems to be working 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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May 2, 2020 02:54PM Jettie wrote:

i use these on both hands and feet as couldn't get the gloves, i have extra gel packs that i swap out during chemo, there pretty easy to put on by yourself. I also paint my nails a dark colour too.

https://www.amazon.com/gp/product/B003L4WOKG


Heart

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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May 5, 2020 09:09AM Arizonasurvivor42 wrote:

Hello all, Christie here. Angelanotangie thanks for starting this post. Just like you I will be starting my first Chemo treatment on May15th. I will be starting with AC every two weeks for 8 weeks followed by Taxol every two weeks for 8 weeks. 8 total chemo treatments.

I had a nipple sparing bilateral mastectomy direct to implant surgery on April 27 and I had an IV port placement surgery yesterday. A little sore and strange feeling on the neck.

I thought about cold capping but have ultimately decided I will go with wigs and caps. The wig shops are open here by appointment so I will be tackling that early next week.

I had my ct scan Friday and should have the results on that tomorrow, I still have my echocardiogram, bone scan, and labs this week then at will be happy to be done with all this testing! I am keeping a journal of all my appointments and side effects because it’s all really becoming to much to remember.

Happy to have a group of others to share in the experience that we are all in.

Dx 2/17/2020, DCIS/IDC, Left, 4cm, Stage IA, Grade 2, 3/15 nodes, ER+/PR+, HER2- Surgery 4/17/2020 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy 5/15/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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May 6, 2020 12:27AM PJAL wrote:

Thank you for starting post. I’m Paula. I begin chemo on 5/14. Angelanotangie, I was also crushed when this treatment was recommended especially since my surgeon told me after path report came back that it was highly unlikely. However, there were tests pending and didn’t receive the full report yet.

My first major surgery. I decided on a skin sparing nipple mastectomy with reconstruction, but due to Covid, the expander would have had to stay in longer so decided on mastectomy without reconstruction for now. I was supposed to stay overnight, but was in and out surgery for me. Very little instruction. No instruction given on exercises. No mention of mastectomy bras, etc. I was grateful that I didn’t have to stay overnight. My husband waited for me in the parking lot.

All hospital stores for mastectomy bras, instruction, etc. closed. I found one place in my area who was kind enough to see me. She’s taking 1 patient per day and saw me right away. It’s privately owned, so had to pay up front since I never received an order/prescription for bras. She gave me good instructions and was knowledgeable about process.

Saw a wig specialist in my area last week. Lot of tips from my sister who shaved her hair due to Lupus induced Alopecia. She directed me to wigs.com and my hair stylist directed me to wigs buy.com. A hair stylist can work with cut.

Had to have Covid test before beginning treatment which was yesterday. I have Echo appointment, blood work and port placement tomorrow. Nervous about port procedure. Anyone had that experience? Placing on my good side near. I was hoping they’d place it on side of mastectomy.

Thanks again for posting. Will look forward to following share.


Dx 2/2020, DCIS/IDC, Right, 1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2+ (FISH) Surgery 4/3/2020 Lymph node removal: Sentinel; Mastectomy: Right
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May 6, 2020 12:53AM Jettie wrote:

you may also want to look at https://www.paulayoung.com its a sister company of wigs.com and sign up to get discounts, both sites have sales and coupons going. And see if your insurance covers a cranium prosthesis aka wig, my bcbs allows for 1

https://www.wigs.com/pages/wigs-covered-by-insuran...


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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May 6, 2020 01:13AM PJAL wrote:

Jettie, thank you for the info. Looking into it now.

Dx 2/2020, DCIS/IDC, Right, 1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2+ (FISH) Surgery 4/3/2020 Lymph node removal: Sentinel; Mastectomy: Right
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May 6, 2020 05:13PM Arizonasurvivor42 wrote:

I just wanted to share the good news I received today at my appointment with my Oncologist.....
My CT scans came back clear and my Oncotype test results came back with a low score of 13. Because of my age, 42 and the fact that I had cancer in 3 lymph nodes my doctor wants me to do chemotherapy but he has now changed my treatment from AC-T for 8 sessions, one every 2 weeks to TC(taxotere, Cytoxan) for only 4 sessions every 3 weeks! I have spent the past week researching AC- T but now need info on TC; still planning to begin treatment on May 15th.

Dx 2/17/2020, DCIS/IDC, Left, 4cm, Stage IA, Grade 2, 3/15 nodes, ER+/PR+, HER2- Surgery 4/17/2020 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy 5/15/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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May 6, 2020 05:30PM Sugar77 wrote:

H Ladies - just jumping over here to say hello from the April 2020 chemo group. You can do this! Also, for those of you who are doing the TC regimen, there is a long-standing thread that I've recently bumped up. Come over and post or take a look through past posts where you'll find a lot of helpful info. https://community.breastcancer.org/forum/69/topics/697783?page=266#idx_7972

All the best and stay hydrated!

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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May 6, 2020 05:57PM Sabbymama wrote:

That is great news! I am happy that your results brought good news. I'm hoping for a similar course. My CT and bone scans were clear, still awaiting Oncotype, but with my age (50) and four positive lymph nodes, my oncologist also thinks chemo is necessary. I have to wait until next week to find out what meds/course she will order, but I am hoping it will be only 4 like you :). Good luck!

Sabrina

Dx 3/2/2020, DCIS/IDC, Left, 6cm+, Stage IIIA, Grade 2, 4/22 nodes, ER+/PR+, HER2- (FISH) Surgery 4/9/2020 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy; Reconstruction (left): Tissue expander placement Chemotherapy 5/25/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 9/13/2020 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 10/11/2020 Arimidex (anastrozole)
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May 7, 2020 08:31AM - edited May 7, 2020 09:40AM by KeepingCalm

Hi everyone,

I guess I'm starting us off with my first of fourTC chemo today. And I am focusing on remaining calm! Decided not to cold cap but am icing hands and feet which hopefully will minimize the neuropathy possibility. Hope everyone's doing okay.

PJAL I'm also in Maryland outside of DC. My port placement was more difficult than my mastectomy recovery but that is mostly because they really didn't tell to expect how sore the incisions would be and in the mastectomy I had a very successful multi day nerve block. I'd just suggest clarifying what you can/should take and how often to treat any pain you might have. A week later, it's much less tender and it was easy to start the meds through the port today for chemo so I guess that's the idea - a plus.

Dx 2/2020, DCIS/IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Surgery 3/23/2020 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy 5/7/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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May 7, 2020 10:07AM Angelanotangie wrote:

Hey everyone, just thought I’d check in. Good luck today, Keepingcalm! I’m going to work on the roll call tonight.

I’ve got a consultation for my port this morning and then they will schedule the procedure. I’m supposed to be starting chemo in 8 days, wth! It’s all getting real for me. I’ve done a few virtual workshops from Look Good, Feel Better on makeup and headcovers. Boy, I went through my diagnosis, the tests and my surgery with strength and bravery but chemo seems to be the one I’m really afraid of. I know, I’m still being brave by being afraid and doing it anyway, but I don’t feel that way. I bought the cold booties and mittens because I really don’t want neuropathy but idk if I will be able to tolerate it. I’m someone that has cold feet and hands (almost) year round.

Thanks for being here.

Angela

Dx 2/3/2020, DCIS, Right, Stage 0, Grade 3, ER+/PR+, HER2- (IHC) Dx 2/17/2020, IDC, Right, 3cm, Stage IIA, Grade 3, 2/11 nodes Surgery 4/2/2020 Lymph node removal: Right; Mastectomy: Right Chemotherapy 5/15/2020 AC + T (Taxol) Radiation Therapy 9/15/2020 Breast Surgery Prophylactic mastectomy: Left; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy
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May 7, 2020 01:38PM - edited May 7, 2020 01:41PM by Arizonasurvivor42

I will keep my fingers crossed for you Sabrina!

Best of luck today Keeping Calm, let us know how your first treatment goes. I purchased the foot sleeves with the ice packs in them and figured I would stick my nails in a bowl of ice water during the taxotere infusion. Not sure how easy that will be.

Angela, I think the chemotherapy part is the hardest part because of all of the unknowns. I think researching and being prepared is the best way to get through this and it sounds like you are doing just that.

Dx 2/17/2020, DCIS/IDC, Left, 4cm, Stage IA, Grade 2, 3/15 nodes, ER+/PR+, HER2- Surgery 4/17/2020 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy 5/15/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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May 7, 2020 05:42PM Angelanotangie wrote:

Hi again. I finally got to the Roll Call. It wasn't as hard as I thought, since a lot of you don't quite know your dates yet. Please give me the missing info (if you want) and correct anything that's wrong.

I had my port consultation today, surgery will be Monday (no time yet!). Just in time to heal for my infusion on Friday. Forgot to mention that I went to OT on Monday (5/4) because I had developed some cording under my arm and didn't have full range of motion because of it. I couldn't believe that after the OT stretched and massaged (digging in painfully, I mean LOL) my arm, I was able to raise my arm all the way over my head (forwards and sideways)! I'm so happy that at least I don't have to stress about that any more.

Suz_eee started treatment yesterday and KeepingCalm today so please keep us posted on how you all are doing!

Angela

Dx 2/3/2020, DCIS, Right, Stage 0, Grade 3, ER+/PR+, HER2- (IHC) Dx 2/17/2020, IDC, Right, 3cm, Stage IIA, Grade 3, 2/11 nodes Surgery 4/2/2020 Lymph node removal: Right; Mastectomy: Right Chemotherapy 5/15/2020 AC + T (Taxol) Radiation Therapy 9/15/2020 Breast Surgery Prophylactic mastectomy: Left; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy
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May 7, 2020 06:40PM UnrealTarHeel wrote:

Thanks for doing that, Angela. I actually start on Tuesday, which is 5/12. Port placement tomorrow. Hate the idea that this is actually happening, but ready to get on with it already--and hopefully done with it. I'm in North Carolina.

Suz_eee and KeepingCalm: Sending you good wishes and strength.

Dx 2/28/2020, DCIS/IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2+ Surgery 3/27/2020 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 5/12/2020 Taxol (paclitaxel) Targeted Therapy 5/12/2020 Herceptin (trastuzumab) Radiation Therapy 8/25/2020
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May 8, 2020 04:10AM PJAL wrote:

Hope everyone is doing ok.

Got port placed yesterday. Procedure went ok, but I am sore. Wasn't really explained until yesterday before placement. I felt like telling them “never mind". I think it's the stitches that are sore. Weird feeling from catheter in my neck/collarbone area, but doesn’t hurt. Not as bad as they described though. He said 4 weeks to completely heal.

Angela, like you, I said to myself after leaving the hospital yesterday “now it's getting real" I start Taxol on Thursday, 5/14, once a week for 12 weeks. I was told at first I'd most likely not need it, but was devastated when It was recommended. I fear this treatment and I'm not looking forward to it, but ready. My user name for roll call is PJAL (Paula) - 5/14. Thank you for starting the list and group.

KeepingCalm: sorry you had a tough time with port. Is it better? I'm near Fort Meade area. Kind of in the middle between DC, Baltimore and Annapolis. How did your first treatment go? Too bad we can meet up. Where are you being treated?


Funny story about hospital appointments yesterday: I had multiple appointments. First time in the actual hospital. Very low volume of people in hospital right now. Was finished one appointment going to next, but couldn't find elevator. Decided to take steps. Saw exit sign above door, but didn't pay attention to big sign on the front of the door that said not to enter if you're not an employee. Got stuck in stairwell for about 20 minutes. Security couldn't figure out which stairwell I was in. I finally waited until I saw someone outside passing and banged on door. A very apprehensive nurse opened and let me back in. So embarrassing, but now a little funny. I have decided to keep a journal of appointments. Trying to keep calm and lighten my mood.

So thankful this group for support and understanding.



Dx 2/2020, DCIS/IDC, Right, 1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2+ (FISH) Surgery 4/3/2020 Lymph node removal: Sentinel; Mastectomy: Right
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May 8, 2020 09:54AM - edited May 13, 2020 01:43PM by ByHisGraceTwice

UnrealTarHeel — popping over from April 2020 Chemo group to share because I'm on the same Herceptin & Taxol plan as you. My first infusion was April 1; second infusion was yesterday, May 7.

April 1 — I was given Kanjinti (without my knowledge or consent.) It's a “biosimilar" to Herceptin.
May 7 — I was given the “real" Herceptin by my new medical oncologist.

Experiences were as different as night and day.

Kanjinti — I was hot — hot like a hot flash. Started about ten minutes after the infusion began. I vomited nonstop the last 2/3 of the 90 minutes. For 12 hours after the infusion, I had a fever of 102.5° (my normal is 97.5°,) chills, nausea, vomiting, diarrhea, severe muscle weakness, and fatigue. The muscle weakness lasted a couple days. The diarrhea and fatigue lasted about a week. Acid reflux, which I never had before, was a problem for a month after the Kanjinti infusion.

Herceptin — side effects started about ten minutes after the 90 minutes infusion ended. They were a stuffy nose, a little bit of asthma wheezing, and tired. Nose progressed to being totally stopped up and stayed that way until I fell asleep. Wheezing got better after a nebulizer breathing treatment. This morning, my nose still is a little stuffy, but the asthma wheezing is gone. I feel rested, so I'm thinking the tiredness was because it was a long day and I didn't sleep well the night before. That's it; I'm beyond thrilled.

I'm going to summarize now what I learned after I found out I wasn't given the real Herceptin. I'm not a scientist or a doctor so I'll edit to add a link with science specific info.

Kanjinti is a biosimilar to Herceptin. Both are monoclonal antibodies ... BUT ... they are not interchangeable like a generic and a brand name pill. A generic pill is made using substantially the same recipe as the original when the patent runs out on the original.

It's different for monoclonal antibodies because they're made from living organisms. Herceptin doesn't have to make public its recipe. The copycats have to guess how it's made.

Herceptin was FDA approved ~15 years ago after clinical trials proved how well it worked on HER2 positive cancer. Kanjinti was approved less than a year ago after the "guess" about how Herceptin is made was close enough to satisfy the FDA. Kanjinti isn't the only Herceptin biosimilar on the market — there are four or five others approved by the FDA in the last several months.

Your body might be ok with one or all the biosimilars. My body isn't. I have allergies to proteins in cow's milk and bay scallops. Herceptin is made with hamster ovary protein. Kanjinti is made with mouse protein. From the extreme difference in how I reacted — my body doesn't like mice protein but's is ok with hamsters. LOL

Your MO must tell you if you're to be given a biosimilar instead of the real Herceptin. If your MO doesn't tell you about them, it's important to ask. Read the medical consent you're signing. The scientific name for Herceptin is Trastuzumab. Kanjinti has “— anns" after Trastuzumab. If your consent says anything other than Herceptin or Trastuzumab ask for it to be explained to you before you sign.

The potential benefit of Herceptin and the risk of heart damage is something I've thought about carefully and decided is worth taking. A physician substituting a biosimilar “knock-off" without disclosing doesn't give a patient the information upon which an informed decision can be made.

🌈

j

Edited to add link to four experts presenting about biosimilars:

https://www.examinebiosimilars.com/?c=bsm-16cfd42a680&gclid=EAIaIQobChMIoObHv6b06AIVgojICh3hjACEEAAYAiAAEgLUsvD_BwE&gclsrc=aw.ds

Dx 11/18/2016, IDC, Right, 2cm, Stage IIA, Grade 2, ER+/PR+, HER2+ (IHC) Surgery 1/30/2017 Lumpectomy: Right Dx 11/18/2019, IDC, Stage IV, metastasized to bone, Grade 2, ER+/PR+, HER2+ (FISH) Radiation Therapy 11/18/2019 External: Bone Dx 3/13/2020, IDC, Stage IV, metastasized to bone Radiation Therapy 3/18/2020 External: Bone Targeted Therapy 4/1/2020 Targeted Therapy 5/7/2020 Herceptin (trastuzumab) Chemotherapy 5/19/2020 Taxol (paclitaxel)
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May 8, 2020 10:30AM - edited May 8, 2020 10:32AM by CCGirl

Hi Angelanotangie

I'm popping in from the April group even though I am sort of a cross over. Started chemo on the 4th of May after a lot of extra tests and waiting. You are not alone feeling more frightened of chemo than of the surgery. With surgery, you go in, they remove whatever, you wake up, go home and heal. With chemo, it's a whole other animal. My anxiety was off the charts even though I hid it fairly well. Until they took my blood pressure at my first infusion. It was 210/104. The nurse took it twice to be sure. Then she said, you're going to have to meditate for a while before we start. It finally went down quite a bit, but I never have high blood pressure and it came out of nowhere. I guess what I'm trying to say is, if you're feeling anxious and scared, ask your MO if you can take something for it. You're looking at a whole new thing with chemo. We spend our entire lives avoiding putting dangerous chemicals in our bodies. And now, we're going to just sit in a chair and let someone inject it into our veins? Causes a total fight or flight response, at least for me. Now on day 5 after my first round. The anti anxiety meds are working. I'm feeling sort of better and took a long walk today. Drinking a ton of water. Taking my new friend Tylenol for the bone pain and the icky flu-like feelings. And naps in the afternoon. Taking every hour as it comes. Doable.

You've got this!

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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May 8, 2020 11:04AM PJAL wrote:

ByHisGraceTwice,

Thanks for the information. Im sorry you had that experience. I will be sure to put this on my list of questions. I'm supposed to start Herceptin too with first chemo next week. Because of COVID, I'm not have a chemo tutorial until the day of and I've contacted the nurse to ask questions. She said I could do the icing on hands and feet, but it was too much to explain all my questions over the phone or email.

CCGIrl, I have the same fear with chemo as Angela along with other drugs. Thank you for posting. What anti anxiety meds are you on? Has anyone taken medical marijuana? I just got my prescription card and purchased in pill form. This was one of the questions on my list. I purchased two on the advice of the person helping me in the store. I have 5mg and a 10mg. Combination of both CBD/THC. I've taken the 5mg while recovering from mastectomy. Took the pain away and knocked me out without any lingering side effects. MO said they were ok to take for anxiety, but not sure if I should take the day I start.

Thanks again for posting your thoughts and experiences. I’m quite anxious about it all.

Paula

Dx 2/2020, DCIS/IDC, Right, 1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2+ (FISH) Surgery 4/3/2020 Lymph node removal: Sentinel; Mastectomy: Right
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May 8, 2020 11:45AM - edited May 8, 2020 11:46AM by CCGirl

Hi Paula,

The medical marijuana sounds really good. I will check it out with my MO. I'm not sure where the nearest place is to me, but there must be something around. I'm on Lexapro and it seems to be okay. But I'd rather take something more natural and not have to worry about more chemicals going in. I'm going to check on getting a prescriptions card. For a short term anti anxiety med if you are ready to explode on chemo day, there's Xanax. It's an amazing thing. I should have taken one :)

It is a worrying thing, starting chemo. And as long as it's an unknown, it seems big and scary. Now that I've had one treatment, I'm feeling better about it because I've been there and seen the center, talked to the nurses, etc. Before Monday, I hadn't talked to anyone at all. Didn't know anything at all. Didn't even know what I could bring with me. I dragged two big tote bags in there with me. A blanket, a cooler, all of my meds and herbs, knitting, electronic stuff, a thermos full of water, hand lotion, blah blah blah, you name it. It was ridiculous. I think the most useful thing I took with me was my iPad. I was able to FaceTime my best friend and she talked to me for almost an hour. It was such a comfort.

The day after chemo I felt great! Plenty of energy, not sick. Then the Neulasta thing went off that evening and I started feeling like I had the flu. I took Claritin the day I had the chemo and am still taking it. It helps with the bone pain. Now on day 5, I'm feeling almost human. I guess it's like anything else - we get up, we do what we have to do, we try not to fall down. When all else fails, we take a nap.

Hugs,

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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May 8, 2020 12:03PM - edited May 8, 2020 05:24PM by ByHisGraceTwice

Paula, because my first infusion was such a bad experience, the new MO did a first run yesterday with the real Herceptin all by itself. I cannot describe how happy I am with how it went. Best wishes your experience next week goes just as well

🌈

j

Dx 11/18/2016, IDC, Right, 2cm, Stage IIA, Grade 2, ER+/PR+, HER2+ (IHC) Surgery 1/30/2017 Lumpectomy: Right Dx 11/18/2019, IDC, Stage IV, metastasized to bone, Grade 2, ER+/PR+, HER2+ (FISH) Radiation Therapy 11/18/2019 External: Bone Dx 3/13/2020, IDC, Stage IV, metastasized to bone Radiation Therapy 3/18/2020 External: Bone Targeted Therapy 4/1/2020 Targeted Therapy 5/7/2020 Herceptin (trastuzumab) Chemotherapy 5/19/2020 Taxol (paclitaxel)
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May 8, 2020 01:16PM suz_eee wrote:

HI All,

KeepingCalm how did the rest of your Chemo round 1 go yesterday? I was yesterday also.

Nan, like you I kind of overwhelmed myself thinking of all the chemicals they were going to be putting in me. I think I watch to many SciFis. I pictured glowing green goo coursing my veins and feeling everything. Everything actually went well. The chemo itself did not bother me at all. They gave me steroids and nausea drugs beforehand. Then the TC. I sat in my chair and played Animal Crossing on my Nintendo Stitch. (A suggestion from my daughter) I also was Cold Capped. That was more uncomfortable. It was cold and made the day go much longer. But it was bearable.

Today I feel pretty good too. Might be those steroids amping me up. I went for an hour walk this morning. I ate comfortably. I am trying to do all the things I can to keep the symptoms minimal. I took my Claritin. I am drinking a ton or water. I am rinsing with Biotene mouthwash after brushing. I am gargling and mouth rinsing 3-4 times a day with warm water with salt and baking soda. I had some senna tea last night to keep from getting constipated. I have minimized the vitamins I take. Now only taking D3, B complex, and probiotic. I also used to use Calm magnesium supplement for bedtime. But it has 450% of vitamin C. Watch out for vitamin C. I know on TC I have been told not to take any vitamin C. In food is OK though. So I just ordered a Magnesium Gycinate to replace the Calm. I already have insomnia problems, so I need some help there. I take the magnesium supplement and about 6 drops of THC tincture under my tongue at bedtime. The magnesium helps me fall asleep and the tincture helps me stay asleep. I use barely any, but it makes a difference.

I know worse days are coming. But, the actual chemo day turned out to be far less scary than I expected.

Wishing you all well on this journey.

Suzy

Dx 3/20/2020, Right, <1cm, Stage IA, 0/3 nodes, ER+/PR+, HER2- Chemotherapy 5/7/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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May 8, 2020 01:37PM jelloelloello wrote:

Hi everyone! I'm also jumping in from the April 2020 chemo group : )

I just had my port placement on Monday, even though I had already completed 5 chemo sessions already. The procedure wasn't bad at all for me-- I was under moderate sedation which meant I was awake and kinda tripping in a fun, relaxing way during the surgery, and I didn't feel an ounce of pain. Yay! But about four hours later, after I got home and napped, I felt a lot of pain and discomfort like I was hit by a truck. I guess the pain meds had worn off! So I suggest discussing a plan with your doctor/nurses about what to do at home for pain management. I ended up taking Advil and relying on ice packs. The port site was incredibly tender for a few days and the soreness in my neck was the worst because I felt like I couldn't find a comfortable neutral position to hold my head without feeling like I was straining my neck. However, the most difficult part has been trying to cover it well enough to take a shower (only needed for the first week or until the glue or steri-strips come off). It's hot where I live so my skin is sweaty, sticky and dirty (haha) so the bandages don't stick well and I can't figure it out. Sigh. The pain mostly cleared up by Thursday (yesterday) for session #6, and I went into my chemo appointment feeling pretty ok! The first port access definitely hurt, but more from the pushing/touching of the still bruised and tender site than from the needle itself. My treatment center did not have numbing cream available and I didn't know I was supposed to get my own if I wanted it. Check into that in advance if that's something important to you! Personally, the pain of the port access sucked for a minute but it's temporary and I feel like I could do it again if I had to, though my nurse assured me it won't feel that bad next week. Whew. In general, some members of our April group said it took 2 weeks, or maybe 3, to really feel like themselves again with the port in their bodies.

About medical marijuana: It's legal in California and it's very easy to purchase here (shops still open during the pandemic because they are considered to be essential services, at least in Los Angeles). I hardly every used it before chemotherapy, but now, I rely on edibles, usually gummies, about 3 nights a week to help me sleep-- it relaxes me and takes the edge off of body pains (they're not extreme but distracting enough that it's hard to sleep). (For reference: I'm on a weekly schedule of Taxol, which is not one of the heavy-hitter chemo meds. I usually feel the most fatigue and discomfort on Days 3 & 4.) I also have some CBD oil (no THC to get you high, just the medicinal properties found in the CBD part) but I'm still figuring out the right dosage to get it to work right for me. It's a little more difficult to figure out because there isn't always an immediate effect, so most people rely on CBD oil as a daily regimen for long-term effects. Also, my oncologist is totally on board with any marijuana or CBD usage!

Good luck to all of you who just started chemo or are about to start soon! Before I started, I felt totally overwhelmed about how to prepare for it, especially during the pandemic situation that included quarantine, limited availability of items in stores, and delayed shipping times for online orders. Ugh. And I was trying to research everything on the internet, but there was just too much out there to digest! Like to ice/cold cap or not; should I start fasting or work on a high-protein diet; what kind of supplements should I be taking; do I need to stock up on lotions, nail treatments, wipes, etc. In the end, I realized that I could prepare my bag with the usual stuff for a long plane trip, trust the nurses and staff at the treatment center to take care of me, and just bravely walk in there on the first day and see what it's all about. I could always make adjustments for the next session and learn as I go. In other words, nothing had to be actually decided before my first chemo appointment. Once I cut myself some slack, it helped to ease my anxiety.

Here are my tips for starting chemo:

* Push fluids throughout chemo, but definitely focus on the day before, the day of, and the day after. You'll feel so much better if your body is well-hydrated and you can push out the meds as quickly as possible.

* The first chemo appointment ended up taking all day for many of us, even though the actual infusion time is only a couple hours or so. You might have to do blood draw first and wait for lab results, then there's all sorts of set up, and waiting for your meds to be released, and extra time for your nurses to explain things, and also the infusions are usually run extra slowly at first to gauge your reaction to each new drug (including pre-meds). So bring snacks, layers, blanket, ipad, Nintendo Switch, knitting, crosswords... anything to keep you comfortable and your mind occupied. And have your headphones ready and your favorite person(s) available for you to call or text at any time throughout the day.

* Bring a charger/cord (or two) for your devices, but also an external battery just in case you aren't near an open outlet.

* Don't worry about looking silly, overprepared, underprepared, whatever. No one cares. And if anyone seems to care and gives you judgey eyes, then just remember YOU don't care! Your main job is to take care of yourself and only YOU know how to do that best. And you have cancer, so give yourself a break, haha! So if you want to do the icing hands and feet thing even though no one else at your center does it, go ahead! Go ahead and bring two large bags of stuff because you don't know what you need- who cares? You could also bring nothing really and probably be ok since most centers have plenty of drinks, snacks and blankets for you. Dress however you want to! No rules! (Except for access to your forearms or port area, of course.) You just wanna be comfy and you're gonna throw it in the wash when you get home anyway. Walk in there high as F on marijuana? Sure, go ahead! My nurses say they definitely have some patients who are high on any number of things (anxiety meds, whatevs), and they are happy to take care of you no matter what. You be you, dude.

* Don't be afraid to ask questions! It's ok to admit you don't understand something or forgot something. While the doctors and nurses have all the experience and training to be experts in general, each individual patient is different. YOU are your own best advocate, and since most hospitals/treatment centers aren't allowing visitors right now, you might be the only one there to speak up for yourself. Make them repeat stuff, ask for printout or copies, write it down if you have to. Even though you're just starting and maybe you feel like you don't know anything, you're still ultimately in control of your treatment. And you don't have to worry about annoying them with your questions-- they'll still like you and be nice to you!

GOOD LUCK! We're all thinking of you, cheering for you, commiserating with you, and sharing the same fears, hopes, confusion and laughs. You can do this! We're all doing this. Together. Reach out to this group, or the AWESOME APRIL GROUP (wink), or even feel free to Private Message me or any of your new friends, at any time. :)

love, jess

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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May 8, 2020 03:24PM PJAL wrote:

ByHisGraceTwice - I'm glad it went well.

jelloelloello, suz_eee and CCgirl- Thank you for all of the information!!



Dx 2/2020, DCIS/IDC, Right, 1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2+ (FISH) Surgery 4/3/2020 Lymph node removal: Sentinel; Mastectomy: Right
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May 8, 2020 05:12PM KeepingCalm wrote:

Hi everyone,

Sorry for my delay in reporting back! I'd like to say it's because I've been relaxing in bed but instead, the good news I guess, is that all went fine and I've been up and about doing my normal stuff - Covid home schooling, working remotely, laundry etc. I'm finding this to be a strange time, on the one hand you just have to go along with your mostly normal life and on the other hand, having breast cancer is needless to say kind of a big deal! I bounce back and forth between feeling confident in my team and treatment plan and all the stats and worrying about the what ifs over time which I rationally realize is a waste of time.

Port felt much better this week which was about a week out from it being placed, and the MO prescribed numbing cream and then the nurse had me ice it before starting the infusion. So far all of the meds they've prescribed seem to have warded off most side effects (fingers crossed). I iced my hands and feet which felt cold! Decided not to cold cap which I feel in between about - like maybe I should have done it but on the other hand this way my hair loss will be uniform and hopefully temporary. Actually received a baseball cap with hair today from https://www.shopdearmartha.com/ which I think I found on this site and it's works pretty well is actually pretty cute.

Neulasta onpro went off about a 2 hours ago so we'll see how that affects me over the next few days but like others I started Claritin in advance and hope the joint pain won't be too bad. Overall I do feel like I've been hit by something - chemo! - in that I feel a bit draggy but not so much that I can't do what I need to do and my appetite right now is fine. Did notice that my OJ tasted a bit more bland this morning. So good to hear CC Girl's feedback about feeling pretty decent by Day 5.

Hope everyone is doing okay!


Dx 2/2020, DCIS/IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Surgery 3/23/2020 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy 5/7/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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May 8, 2020 05:36PM CCGirl wrote:

What Jess said! Any time, we’ve got your back.

Xoxo

Na

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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May 8, 2020 05:47PM UnrealTarHeel wrote:

@ByHisGraceTwice -- thank you for sharing your experience w/ Kajinti and Taxol. I feel like I've done a fair amount of reading up -- but this is one I haven't encountered yet. As if there isn't enough to be worried about! But so good to know. I've been so freaked out about the Taxol that I hadn't really stopped to think about the Herceptin.

Sharing everyone's anxieties about getting started. It is such a big leap into the unknown--and for many of us, what we do know (from news stories, tv, etc.) isn't very comforting. But here we all are, brave af.

@Jelloellloello -- loved your tips for getting started. You are so right about not worrying and no rules. Plus, I'm pretty sure they've seen it all. I just had my port placed this afternoon and was unprepared for how sore it feels now. Everyone I've encountered tells me how glad they were.to have theirs -- and considering it took two attempts to get an i.v. line put in today, I'll probably be glad, too, eventually. All of the medical folks give their explanations and then ask, "ok?" ("Here's how the port works.... OK?" "It's time to wheel you back, ok?") I just keep telling them that NONE of it is ok, really, but it's just what needs to be done. And it is.

--Judy in NC

Dx 2/28/2020, DCIS/IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2+ Surgery 3/27/2020 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 5/12/2020 Taxol (paclitaxel) Targeted Therapy 5/12/2020 Herceptin (trastuzumab) Radiation Therapy 8/25/2020
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May 8, 2020 06:20PM KeepingCalm wrote:

I can totally relate to that Judy in terms of the ok, ok? Not really but what else can we say! But as they say, you just have to show up :). Port will definitely feel better in the coming week but I was totally caught off guard with that as well whereas for my mastectomy they prepared me well for what to expect and I was given very effective meds and a clear plan to follow with those.

Dx 2/2020, DCIS/IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Surgery 3/23/2020 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy 5/7/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel)

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