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Topic: Starting chemo November 2020

Forum: Chemotherapy - Before, During, and After —

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

Posted on: Oct 18, 2020 08:37AM

marie914 wrote:

Hello,

I hope I can find others who will be starting chemo in November. I am having 4 cycles of taxotere and cytoxan after surgery since my mammaprint came out on the lower side of high risk. The plan is to cold cap. I am seeing my oncologist 10/22 to finalize details to start the first week of November.

Anyone that is a veteran - please let us know any helpful hints. I did read the helpful hints section and it was great!

Dx 7/31/2020, DCIS/IDC, Left, 2cm, Stage IIA, Grade 2, 0/8 nodes, ER+/PR+, HER2- (FISH) Surgery 9/14/2020 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Tissue expander placement Chemotherapy 11/6/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 1/31/2021 Reconstruction (left): Silicone implant Hormonal Therapy 2/8/2021 Femara (letrozole)
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Nov 24, 2020 01:00PM Etincelle827 wrote:

Hey marie914, thanks for the push. So today is my day 19 since my first TC treatment with Penguin cold caps. A few days ago my pubic hair and leg hair started falling out. Yesterday I noticed my arm hair was a little loose—I can pull some of it out with my fingers. About two days ago my head hair started shedding more than normal, but nothing alarming. I think when I wash it tonight there might be a little more. It is a little anxiety inducing as I have quite fine hair, medium density, and if half of it falls out it'll be very noticeable. Honestly though, I've had such an easy time with the chemo so far that even if I do lose my hair, it won't be that big of a deal.

Rainyday7: My heart was racing like crazy about day 4-8. I have a Fitbit, and my resting heart rate is usually in the high 50s, but it jumped to like 75-90 during those days. I don't think it was chemo drugs though, I think it was steroid withdrawal. My BP was also super low from the steroid withdrawal. Now on day 19 my resting heart rate is back to high 50s, but it took at least a week to get there.

I have my second treatment on Monday. Thanks everyone for sharing your experiences. Wishing you a happy holiday and hoping you find some joy in these crazy times. What an adventure life is.


Dx 8/28/2020, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/2/2020 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/6/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Nov 25, 2020 08:59AM JoW888 wrote:

DanniB - Welcome to the group! I sat on the border with my Oncotype score too because of my age but since it would bring my recurrence risk down from 12% to 6%, my oncologist felt that I may still benefit from chemo. I thought so too since I would like to do all possible at this point. Her words were, "Don't miss the window of curability." I'm on 4 rounds of Texotere & Cytoxan. Had my first round last Friday. All the best to you for Friday!!

Hi Everyone - today is day 6 for me. My tummy has been feeling weird/tender/slight cramping and I've been watching for diarrhea. Haven't had much of an appetite so whatever I can get into my body, I try. Just like this morning when I felt for something savory at breakfast instead of sweet so I ate a slice of quiche and a little spaghetti. Who knows what my breakfast menu will look like in the coming days!! I miss eating salads (not chancing it!) and raw baby Spinach. I cook my Spinach now and it feels like I'm cooking all those nutrients away! Sleep hasn't been great either!

Hope everyone has a safe and Blessed Thanksgiving despite the journey we're going through!

Dx 9/15/2020, DCIS/IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Nov 25, 2020 06:48PM sharon0706 wrote:

Hi all. Just had my first TC infusion yesterday. It was a long day and everything went okay. Today, Day 2, I had tons of energy (from the steroids, I presume?).

For me, the hardest part was keeping the frozen slippers and the frozen mittens on for an hour. Under the frozen slippers, I wore double socks on my feet and under the frozen mittens I woke silk glove liners plus hospital socks. My sister coached me through this part. She put on her phone time for 20 minutes at a time and rubbed my feet a few times when I needed a break.

I wore the Paxman scalp cooling system, and I can confirm that first 15 minutes were the hardest. I couldn't really speak during that time, but I turned on a timer and sucked on a lemon drop till it was over. For reasons I can't understand after 15 minutes I adjusted.

I really appreciate hearing everyone's experiences. My next treatments are 12/15, 1/5, and 1/26.
Dx 8/1/2001, LCIS Hormonal Therapy 6/29/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 6/29/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 8/24/2020, ILC, Left, 1cm, Stage IA, Grade 3, 1/1 nodes, ER+/PR+, HER2- Surgery 10/20/2020 Lymph node removal: Left; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/23/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 2/21/2021 Femara (letrozole) Surgery Prophylactic ovary removal Surgery Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Nov 26, 2020 08:41AM DanniB wrote:

Hello everyone,

my treatment got moved to next week as i ended up spending a night in A&E due to potential overstimulation for fertility preservation which caused severe abdominal pain.

Hope you are all doing ok and wish everyone a happy Thanksgiving celebration.

Dx 9/25/2020, DCIS/IDC, Right, 1cm, Stage IIA, Grade 2, 2/4 nodes, ER+/PR+, HER2- Surgery 10/16/2020 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 11/27/2020 Taxol (paclitaxel) Radiation Therapy 2/15/2021 Whole-breast: Breast, Lymph nodes Hormonal Therapy 3/1/2021
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Nov 27, 2020 12:52PM renbird wrote:

LMS458412-

Thank you for your veteran's perspective about icing hands and feet. I really appreciate it! : ) -Ren

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Nov 27, 2020 01:44PM - edited Nov 27, 2020 01:56PM by renbird

Hi November 2020 chemo ladies!

Hope everyone had a nice Thanksgiving, despite these crazy times, and your simultaneous personal cancer journey. Whoosh! It's a lot, right? Thank goodness we have bc.org and each other.

First, sorry I dropped off the face of the earth for a bit. My first treatment was Nov 19th, and I wanted to take some time (it's now been a week) to recover a bit, get a grip, and see what happens before I started posted again.

My infusion day schedule, to give you an idea of how the timing goes:

7am Quick blood draw and IV insert into hand/arm.

7:30am 30-minute consult with oncologists, after they look at the results of your blood draw.

8:30am 30-minute pre-infusion cold capping– to try and keep hair– with Paxson machine ($1200!) We'll see if it works.

10am-12pm 2-hour chemo infusion, one hour each (Taxotere & Cytoxan) I wore ice mittens and ice slippers (with thin socks) during the whole thing, on and off as much as I could stand. (Maybe 2 minutes on 30 seconds off? I just slid my hands in and out. We'll see if it helps keep neuropathy away!)

12pm-1:30pm 1.5 hour cold capping post-treatment chill. I just dozed and relaxed at that point.

All went pretty well except that I experienced an 'allergic' reaction to the Taxotere about 2 minutes in. I felt funny, went flush in the face, and then felt funny in my chest. As soon as I started noticing things, I would share it aloud with the RNs. "I taste metallic." (That's normal.) "I feel funny in my chest..." (That's NOT okay, and they immediately responded.)

My oncologist had told me that an allergic reaction 'could' happen, but was rare. During my consult that same morning, I had asked, "If I do have a reaction, what will you do to help me?" So glad I did! As a result, when it happened, I could tell what they were doing to help (as six nurses flurried around me!) and felt less scared:

They simply unplug the Taxotere tube from your IV, give you a bag of Benadryl and saline instead, and watch you. I guess you get a shot if it gets worse. I got better, and 20 minutes later they tried T infusion again and it went well.

(Now I'm reading on bc.org community that some ladies get a Taxotere reaction even days after treatment? Yikes!)

The next day, Friday...

I took all my meds on time (do this!) and felt good. I even went for a 2 mile walk with my husband.

Over the weekend (Day 3 & 4 if Day 1 is chemo day...)

I felt fatigue and my stomach felt super acidic. I ended up depending heavily on the anti-nausea Zofran to keep it at bay, and Ativan a couple of times at night on top of that at night to sleep.

Felt a bit better on Monday, better on Tuesday, and much better on Thursday (Thanksgiving!)

Tuesday I developed a bit of 'thrush' (white spots and slime on tongue) and a sore spot on my tongue which made it a little tricky to eat. I had been rinsing after each meal since chemo with 1 cup water, 1/4 tsp baking soda, and 1/8 tsp salt, but for some reason it showed up anyway. Contacted my oncologist asap and requested a prescription for Magic Mouthwash (Yes, this IS what it's actually called.) That stuff is SUPER numbing, so you only need a bit, or you can dab it on the spot you need it. Glad I have it for the future of need be.

Okay... last bit of business: Two tools I created for myself so I could go on "auto-pilot" during this complicated time. Feel free to download and customize, just click the link! : )

ThumbsUpThumbsUpThumbsUp

1. Renbird's Chemo Schedule- download as MS Word, edit, and use for yourself! : )

-Tells me what to do when and why, to stay motivated.

-I printed ONE copy of this and use this starting the day before, the day off, and for a week after chemo.

2. Renbird's Chemo Logbook - download as MS Word, edit, and use for yourself! : )

-Tracks what I actually DID and when, so I can be sure to stay on track.

-It also helps me to assess what worked, what didn't, or why I feel good/bad. Example: "Why am I sad?" Oh! I haven't slept for more than 4 hours in 3 days! "Why does my tummy hurt?" Oh! I haven't taken a Zofran for 8 hours!

-I printed 80 pages and had them bound at a UPS store. I use it faithfully EVERY DAY.


Hope all this helps! I'm already nervous for Round Two (Dec 10th) but trying to enjoy feeling better than last weekend.

XO -Renbird

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Nov 27, 2020 04:29PM sharon0706 wrote:

Oh WOW renbird! I want to hire you to run my life! Very impressive. If you are this highly functional on chemo I can only imagine how much you rock things when you are healthy!

Dx 8/1/2001, LCIS Hormonal Therapy 6/29/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 6/29/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 8/24/2020, ILC, Left, 1cm, Stage IA, Grade 3, 1/1 nodes, ER+/PR+, HER2- Surgery 10/20/2020 Lymph node removal: Left; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/23/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 2/21/2021 Femara (letrozole) Surgery Prophylactic ovary removal Surgery Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Nov 28, 2020 03:51AM Elledwriter wrote:

Thanks so much for uploading your documents! They’re great! Glad that you’re doing pretty well after your first treatment.

I had my second chemo the day before Thanksgiving. This time they cut my dec steroid usage in half- since the first time I had major reactions to it. Worked out much better this time, although like Renbird, I also had a reaction and they stopped the drip and gave me Benadryl, which worked. I also took a Benadryl yesterday, cause I had trouble breathing. Wasn’t sure if it was still a chemo thing or anxiety.

My hair is thinning alot at the crown even though I’m using DigniCap. I think the plan is unless all your hair falls off you’re to keep using the cold cap. The hair grows back faster and thicker afterwards. I saw some people on Instagram who had bald spots on top with the cold cap, but it was faster to grow back afterwards. If you need to, some used a wiglet to cover the crown of their head, almost like a mans toupee, and you couldn’t tell the difference. Meanwhile, I wear a loose soft wide cotton headband to cover the top of my head.

Yesterday I felt super tired- slept only 6 hours in the last 48 hours, even with Ativan. Last night I slept 6 hours so hopefully I’ll have a bit more energy...I don’t seem to have much of a problem with nausea. I took Claritin a week before my after chemo shot and will take until Sunday. So far no bone pain, just a bit of a headache.

Hope you’re all resting well and are enjoying a bit of the holiday!

🍁🧡🍁🧡🍁. Lesli

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Nov 28, 2020 07:06AM renbird wrote:

Elledwriter-

Thanks for writing about your second round experience. It’s so great that we have each other through this tricky time.

Hair: I went wig shopping this week, but I have a HUGE head (I blame my Norwegian ancestry!) and nothing fit. Maybe a hairpiece will be part of my future too. : )

I know we can use health insurance and get scrips first our wigs, but $350-$500! Whooooa! Holy beehives, Batman!

I’ve also bought a $19 wig on Amazon. I may mess with it to make it work for me. We’ll see. Haven’t lost any hair yet, but I know it’s coming.

Keep the faith and Keep on truckin’ and Keep in touch.

-Renbird




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Nov 28, 2020 07:10AM renbird wrote:

Sharon0706!

Hah! You are welcome! My pleasure! 😀

I’m an learning-instructional designer/life coach/consultant (and Oprah fan)... I guess it shows! : )

Planning helps me feel more in control, and sharing makes me happy. Thanks for the thumbs up. We all need more of those!

-Renbird 🧡🍁🌻


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Nov 28, 2020 08:55AM marie914 wrote:

Hello! I had my second infusion yesterday Friday 11/27 (it was the 24th day because they couldn't do it on the 3rd week Wednesday since it was a 1/2 day and with the cold cap I go until 2:30. I do TC and DigniCap and I lost some of my hair (it felt like most of it, but really wasn't) on the 19-21 day. I am still shedding my not as bad. I lost it mostly on my forehead and then some on my top of my head towards the back. I can cover that well with combing, but the forehead looks too bare to me but my husband says it is fine. I usually wear a ball cap if we go out.

rencap - I LOVED your organizational skills. I will print it out. I took notes but still some things I don't remember. I bought a few cheap wigs from Amazon to try and one I thought was fine but my husband and son say I just need a ball cap. They just aren't used to me in a wig I think, but others probably wouldn't know. I didn't want to pay all that money since I am really not going to work or anyplace I need to look "good". I work from home and we haven't had to use our cameras so that is good . It is kind of a planning season and if I do have client calls I just project my presentation and not me. :) Oh and my head is big and that is hard for those wigs. I heard you can get one meant for a man transgender or impersonator. LOL

Lesli - glad that lower dose of steroid helped you. I was looking at renbirds spreadsheet and she takes a lot too it seemed. I might be wrong since I was looking on my phone. I liked your idea of a headband and planning on buying one today. I'm sorry you and renbird both have reactions. My infusions seem to be going well.

One thing I was going to mention. Not sure how I feel about my oncologist. Her "new" nurse practitioner that was an infusion nurse came in first and was kind of combative when I asked about my dose of chemo drugs since mine seemed to be high and my second infusion of cytoxan was 1 hr 30 min. She argued and said that isn't right you need to tell the infusion nurses. I said they aren't going to listen to me they said it is the doctor's orders and she said here are the doctors orders that is not what they say. I got kind of testy and said well that is a problem between you two and not me I didn't like her at all. The doctor was better. HOwever she says I don't need blood work in between infusions since my blood work was good the first time. But can't it get worse?? Shouldn't she check? Then she said my next infusion has to be 21 days so unless I want to go 25 days to stay on Wednesdays I have to go on Fridays. She says she is not in that location on Fridays (I saw her on Tuesday in her closer location) she said that I could just see her nurse practitioner on Friday before my treatment on 12/18. I just thought that was funny but maybe it is okay. At least I don't have to go to a bunch of doctor and lab appointments the next 3 weeks.

I have to get my last fill in my expander 12/9 and then 12/11 I have to have a mammogram on my "good" breast since it has been a year. Weird.

Sharon0706 - I used the booties the whole time I exchanged them half way through with new ice packs. The mitts I don't use very well since I want to be on my phone. I use one and then switch hands. I might just use ice bottle water instead because then my fingers will work on my phone.

JoW888 - I was on the border with my Mammoprint but I decided 4 rounds of TC isn't too bad and so I went for it. Food was all over the place for me Day 2-10 something like that but then all of a sudden I could taste again but still some foods I didn't want to think about. I never was nauseous but my stomach was always rolling that first week. I think because I was trying to avoid constipation which I am prone to when I have anesthesia, steroid, or chemo.

Etincelle - my fitbit resting heartrate has been higher than normal too. Kind of bothersome but I guess it is okay. My pubic hair and my nose hair has fallen out. My legs are pretty bare without shaving. I haven't noticed arm hair yet. I am using serum for my eyelashes and brows which are thin anyhow (since menopause) so hopefully it will help. My hair is thin too so the hair loss from chemo even with dignicaps is scary, but then I think it isn't that bad even if I lost all my hair. I just don't want the permanent hair loss they talk about with taxotere.

Dannib - Hope your infusion went well yesterday. I don't feel bad until end of day 3 (day 1 is infusion day) because of bone pain from neulasta. My stomach and taste buds were iffy for about 10 days but for 2 weeks I felt pretty good.

puncapher - I have muscle relaxers for my implant expanders so I might use them this week if the muscle spasms come back.

Rainyday - The neulasta was the worse for me end of Day 3 and Days 4 and 5 then gradually got better. The taste buds didn't come back for 10 days. I felt smooth thin stuff felt and tasted better like pudding, shakes, soup, thin stews, crackers in my soup and stews, etc. My heart rate higher too on the steroids and when I am in pain. It is higher than my normal.

Have a great day! My day after chemo is always good. I get a lot done. Cleaned kitchen. Washed kitchen floor. Made soup for today and next week when my taste buds are gone. I found soup or thin stews with crackers are the only things I like. Well and ice cream shakes but I am trying not to do that too much. I washed and changed bed sheets. Washed towels. I am trying to do al ot when the steroids are in me.



Dx 7/31/2020, DCIS/IDC, Left, 2cm, Stage IIA, Grade 2, 0/8 nodes, ER+/PR+, HER2- (FISH) Surgery 9/14/2020 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Tissue expander placement Chemotherapy 11/6/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 1/31/2021 Reconstruction (left): Silicone implant Hormonal Therapy 2/8/2021 Femara (letrozole)
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Nov 29, 2020 04:48PM sharon0706 wrote:

Hi all. Day 6 after first infusion #1. Still tired and not much of an appetite, but I was able to get myself to go for a slow walk around the neighborhood for about an hour.

Improvements:

- I did a very slow restorative yoga video this morning without any of the over-the-head arms poses.

- Today was the first day I didn't take any Zofran.

- Mid-afternoon I detected a tiny brand-new feeling of hunger and optimistically ordered in some udon. I ate it while watching Tiny Desk concerts, which was as nice as it sounds. Craving the udon was progress, even though it ultimately ended up in a bellyache.

- I ordered some CBD tincture for next infusion cycle to see if it helps sleep.

Things that are challenging:

- I cannot keep up with the water-drinking program. Warm water goes down easier than cold, but I am drinking far less than my NP advised. I carry my water bottle to every room with me, I put on six hair elastics to track how many times I've filled it, but still.

- Mouth feels still weird but somewhat less gross. Rinsing with saltwater and brushing with baking soda several times a day.

- I'm also finding it harder to be motivated to do my post-BMX surgery and massage. I think maybe I am a little achy. I also find myself oddly more repulsed by touching the tissue expanders. Strong word, I know.

- Itchy spots on my back tonight. Is it bad that I am so excited to take Benadryl to help me sleep? I've been worried about getting dependent on Ativan so I was almost relieved that I had a real reason to a Benadryl.

- I am grumpy and cranky and generally irritable. I feel like throwing out all of my clothes and shoes that I haven't worn in the last year. I know Marie Kondo might be impressed, but I recognize that this is likely a flawed coping mechanism.

I find myself very eager to change the calendar to December. I hate wishing away time but I do wish I could fast-forward a few months.
Dx 8/1/2001, LCIS Hormonal Therapy 6/29/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 6/29/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 8/24/2020, ILC, Left, 1cm, Stage IA, Grade 3, 1/1 nodes, ER+/PR+, HER2- Surgery 10/20/2020 Lymph node removal: Left; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/23/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 2/21/2021 Femara (letrozole) Surgery Prophylactic ovary removal Surgery Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Dec 2, 2020 08:08AM marie914 wrote:

Good Morning! I haven't heard much from anyone. I hope you are all doing well and just busy with the holidays.

Sharon0706 - Most of what you said sounds the same for me. I hate wishing time away but I wish it was late January or even late February. My last infusion is January 8 and my exchange surgery getting the expanders out of me will be middle of February.

I had my 2nd infusion of 4 TC on Friday, November 27. I am feeling better than last cycle. Bone pain was bad Monday evening and a little yesterday. Bad headache every morning but I think I am not drinking as much as I should. It is so hard to keep drinking.

I am doing well with eating soups/stews. I made homemade chicken noodle soup and it was "good". Over the weekend I made Pasta e Fagioli soup (Olive Garden). Tomorrow I might make beef stew. My taste buds seem to be getting better quicker this time. Last time I chipped a tooth chewing on ice. I do like sweet things but I am trying to avoid too much of them and eating protein and vegetables.

Hope some of you will check in and let us know how our other November chemo buddies are doing.

Dx 7/31/2020, DCIS/IDC, Left, 2cm, Stage IIA, Grade 2, 0/8 nodes, ER+/PR+, HER2- (FISH) Surgery 9/14/2020 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Tissue expander placement Chemotherapy 11/6/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 1/31/2021 Reconstruction (left): Silicone implant Hormonal Therapy 2/8/2021 Femara (letrozole)
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Dec 2, 2020 08:55AM SweetTart wrote:

Thanks so much for the great information and sharing that is going on here. I am grateful to read about the experiences of others and to not feel so alone. Had my first round on 11/18 and dealt with bone and joint pain from the neuleusta shot along with some fatigue. Then with some low blood counts, I spiked a fever of 104. Although pretty scary, antibiotics brought it down in no time.

Wondering if anyone has taken the clippers to their head and if you have any advice or thoughts. I am tired of waiting for the inevitable and shedding worse than my dog. Think i am ready to take a little control back.

Ready for round # 2 on 12/2, will be halfway done then!

Dx 8/12/2020, IDC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Dx 8/20/2020, IDC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 9/3/2020 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 10/14/2020 Whole-breast: Breast Hormonal Therapy Arimidex (anastrozole) Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Dec 2, 2020 10:21AM Rainyday7 wrote:

Hi all. I'm on day 17 so finally feeling normal again. It's only now I've realised that I had a dull headache for the first 2 weeks as well as the light headed feeling. I baked a coffee cake earlier and could taste it so that's major progress.I

I used the paxman cold cap but I'm not holding out much hope of it working. The nurse had never used one before so I knew more than she did. It never felt too cold when on. I'm wearing a hairnet to catch the loose hairs and every time I touch my hair a handful comes away. I'm wondering if it does all go before the 2nd chemo should I continue to use the cold cap. I'm on taxotere so more worried about the long term risk of permanent alopecia than the short term hair loss. Will I get any benefit from freezing my bare scalp?

Dreading no2 but hopefully I should feel ok for Christmas as no3 not until 28th.

Dx 6/2005, IDC, Left, 2cm, Stage IIA, Grade 2, 0/11 nodes, ER+/PR+, HER2- Dx 5/2020, IDC, Left, 1cm, Grade 2, ER+/PR+, HER2- Chemotherapy 11/16/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/1/2021 Arimidex (anastrozole) Radiation Therapy External: Lymph nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Chemotherapy AC Surgery Mastectomy: Left; Reconstruction (left): Silicone implant
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Dec 2, 2020 10:33AM marie914 wrote:

Hello SweetTart - I had the bone pain really bad the first cycle but this second infusion it was there but not as bad. If I wasn't using the dignicaps I think I would just clip away. I am tired of all the hair everywhere.

Rainyday7 - I used DigniCap and the nurses seemed to be informed but they didn't really tell me too much. On day 19-21 I lost quite a bit and then since then I have shedding but I still have hair. Pretty thin in places - I did start off with kind of thin hair. I wear a ball cap when I go out but at home I just let it be.

I'm on day 29 now. I was worried about the taxotere and permanent hair loss. The nurse told me that I will lose quite a bit of hair but that is normal with dignicaps just not all and it will come back faster. So I guess I will continue. I need to call my insurance to see if they will pay for it. I heard they do sometimes.

Dx 7/31/2020, DCIS/IDC, Left, 2cm, Stage IIA, Grade 2, 0/8 nodes, ER+/PR+, HER2- (FISH) Surgery 9/14/2020 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Tissue expander placement Chemotherapy 11/6/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 1/31/2021 Reconstruction (left): Silicone implant Hormonal Therapy 2/8/2021 Femara (letrozole)
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Dec 3, 2020 10:50AM Rainyday7 wrote:

Marie,

Good to hear the 2nd infusion is easier than the first. Hopefully I don't get the awful bone pain this time.

I'm in Ireland so it's a bit different in that the hospital has a few cold cap machines but not many people use them. There is no charge to use it. Cancer treatment is generally covered by the state but about 50% of the population have private health insurance anyway . The insurance is more to cover inpatient treatment and to get quicker access to specialists. My insurance will cover the cost of a wig so I have one ordered. I actually have one in the back of the wardrobe from 15 years ago but my hair was longer and darker then so it looks ridiculous now.

Dx 6/2005, IDC, Left, 2cm, Stage IIA, Grade 2, 0/11 nodes, ER+/PR+, HER2- Dx 5/2020, IDC, Left, 1cm, Grade 2, ER+/PR+, HER2- Chemotherapy 11/16/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/1/2021 Arimidex (anastrozole) Radiation Therapy External: Lymph nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Chemotherapy AC Surgery Mastectomy: Left; Reconstruction (left): Silicone implant
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Dec 3, 2020 01:36PM Elledwriter wrote:

Hi everyone,

I had my second chemo treatment on Nov 25. I’ve used DigniCap and had lots of hair fall out after the first one. I was so bummed, however I’ve noticed that much less hair is coming out since then. My crown has thinned, but I’m thrilled to say that my hair has already started to grow back in that area! The nurse who helps put the cap on said to keep doing it because the hair grows faster and thicker than without using the cap. Just hope it continues!

I’ve done so much better this round than the first. My third round is on 12/16. Crossing fingers that this also will go fairly well.

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Dec 3, 2020 01:46PM Elledwriter wrote:

Hi everyone,

I had my second chemo treatment on Nov 25. I’ve used DigniCap and had lots of hair fall out after the first one. I was so bummed, however I’ve noticed that much less hair is coming out since then. My crown has thinned, but I’m thrilled to say that my hair has already started to grow back in that area! The nurse who helps put the cap on said to keep doing it because the hair grows faster and thicker than without using the cap. Just hope it continues!

I’ve done so much better this round than the first. My third round is on 12/16. Crossing fingers that this also will go fairly well.

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Dec 3, 2020 07:22PM Puncapher wrote:

Hello all! Haven’t posted in awhile so thought I would check in. My hair was falling out in clumps last week so I had my cousin clip it off. Very freeing. My scalp is so sensitive and sore that the stubble left by the clippers hurt my scalp when rubbing on my cap so I shaved it off. Feels soooooo much better! Plus I feel like I can track my progress to a cancer free life by the length of my new hair. Does that sound weird?

I had my second treatment yesterday. So far so good. I had such horrible muscle cramps and pain in my hands and feet a week after my first treatment that I decided to try the ice mittens and gloves this time you-all recommend. I’ll let you know how it goes.

Today is my birthday. I had a very nice day with lots of phone calls from my family, gifts sent through Amazon, and a lovely dinner sent by my daughter through door dash. Not quite the same as being together in person but maybe next year.

I hope you are all progressing well and know you are all in my prayers.

Pat

Dx 8/2020, IDC, Right, <1cm, Stage IB, Grade 3, 0/3 nodes, ER+/PR+, HER2- Chemotherapy 11/11/2020 AT Hormonal Therapy Arimidex (anastrozole) Radiation Therapy
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Dec 4, 2020 09:45AM DanniB wrote:

Puncapher - Happy Birthday! Sounds like you had a few lovely treats from your loved onesHug

SweetTart - i got my partner to clip my hair 3 weeks ago, from just below the shoulder the blade to 3 cm short. I was offered the cold capping but chose not to. I like my new hair now and will shave all as soon as it starts falling out.

Marie914 - I was initially going to have CT infusion, but this was changed to Taxol alone due to my oncotype score been relatively low at 16. i did however ask the doctor about the possibility of a permanent hair loss. He said that the risk is low and practically NIL with cold capping (which i would have done i was still on the CT infusion).

Rainyday7 - big hello from London :) we have pretty much the same with NHS / private care here as you. My insurance will cover some of the wig and also prosthetics.

I just returned from my 1st round (this got moved twice from 20th Nov to 27th and finally happened today) of Taxol. I had some 4 drugs first, then waited half hour and then had 3 hours of the medicine. Its a bit hard to find my veins, as i had a lot of blood / canulas in over the last 2 weeks due to fertility preservation and A&E trip, so my available arm is black and blue. Amazingly, when the nurses saw it, they did it with the help of the ultrasound and it was brilliant and pain free (i honestly was dreading the poked veins more than the meds). The rest was luckily uneventful, just got a bit of bitter/ odd taste at the back of the throat. I got anti-nausea, strong pain killers for muscle pains and sleeping pills if i need and am resting at home now. I had some food and so far so good. I will checkin in a few days or when i start feeling the side effects to update youQuick question - has anyone who lost the nipples has any experience with stick on prosthetic ones? Would really welcome any pointers / experiences :) I ordered some from US company called Pink Perfect.

Best wishes and much love to all x



Dx 9/25/2020, DCIS/IDC, Right, 1cm, Stage IIA, Grade 2, 2/4 nodes, ER+/PR+, HER2- Surgery 10/16/2020 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 11/27/2020 Taxol (paclitaxel) Radiation Therapy 2/15/2021 Whole-breast: Breast, Lymph nodes Hormonal Therapy 3/1/2021
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Dec 5, 2020 07:44PM sharon0706 wrote:

Elledwriter, that is great news about your hair.

I am on day 13 of round one of TC. I'm using Paxman but the dread of shedding, likely to begin this week, is hanging over me like a thundercloud. The false eyelashes I ordered to try to fake some control over the process just arrived today. They look like tiny caterpillars.

So many parts of this process have been dominated by anticipatory dread: waiting for MRI results, waiting for biopsy results, waiting for surgery, waiting for pathology results, waiting for oncotype score, waiting for chemo to start, waiting for reconstruction...

I am mostly feeling physically normal these days except I get winded quickly, my tastebuds are dulled, I can't sleep without Ativan, and the inside of my nostrils feel very, very dry, even with the help of a humidifier.

Tonight I am trying a medium dose of CBD to help me sleep. I've tried small amounts (15mg) before with no effect. Has anyone else had success? If so, how many mg?

Dx 8/1/2001, LCIS Hormonal Therapy 6/29/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 6/29/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 8/24/2020, ILC, Left, 1cm, Stage IA, Grade 3, 1/1 nodes, ER+/PR+, HER2- Surgery 10/20/2020 Lymph node removal: Left; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/23/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 2/21/2021 Femara (letrozole) Surgery Prophylactic ovary removal Surgery Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Dec 6, 2020 06:51AM renbird wrote:

Hi Sharon-

We are really in synch (I wish it were for something more fun, like loving chocolate, or sharing a birthday!)

I'm on Day 17 of Round one of TC. I lost a bit of hair yesterday, despite cold capping with Paxson system. I got a little upset yesterday, as part of the dread, the waiting, you describe.

That's what it's like—exactly as you described.

With the exception of reconstruction (I'm six weeks out from right single mastectomy and staying flat) I relate to EACH of the things you listed on a visceral/emotional level:

"...waiting for MRI results, waiting for biopsy results, waiting for surgery, waiting for pathology results, waiting for oncotype score (35!), waiting for chemo to start..."

That's one of the reasons I had the mastectomy after two attempts at lumpectomy. I couldn't imagine waiting for ANOTHER round of results after re-reexcision, or waiting for the results of thirty more years of mammograms (God willing I live to 78 or beyond!)

Anyway, I've also started to dabble in my potential hairless lifestyle:

-So far, I've had an appt with a wig specialist (they were all too small, but she may be able to order a special large one for my big Norwegian noggin'!)

-I ordered two $19 wigs from Amazon. They were pretty good, but still small. Think I'll try an online wig retailer instead. Got my script because those babies are $300-$500!

I too have been messing around with CBD with no success, but also taking a little less than 1.0 ml (50MG) via under the tongue syringe. (The bottle says a "serving size" is 1ml.)

Silly question, but would a Tylenol PM help? Even one has helped me sleep.

Next round for me: This Thursday, Dec 10. You?

-Renbird in RI

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Dec 6, 2020 09:31AM Puncapher wrote:

How do you handle the extreme exhaustion? It’s an effort for me to stand up. I am so exhausted all the time. Very frustrating as I do have things I want to do.
After my lumpectomy, my margins were clear and sentinel node clear. They even downgraded me from grade 2 to grade 1. So I thought, great! A little radiation and I am out of here. Then I got an a mamo print score of 77! So here I am. Dealing with chemo. Your thoughts and suggestions have been very helpful. Thank you.

Dx 8/2020, IDC, Right, <1cm, Stage IB, Grade 3, 0/3 nodes, ER+/PR+, HER2- Chemotherapy 11/11/2020 AT Hormonal Therapy Arimidex (anastrozole) Radiation Therapy
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Dec 6, 2020 09:38AM - edited Dec 6, 2020 01:02PM by Rainyday7

Sharon and Renbird. I am on day 20 and used the Paxman cap. I feel I have lost half my hair based on the width of my pony tail. The only thing is it's evenly distributed so far. The itch at the back of my head is driving me mad and and I'm actually looking forward to the cold cap tomorrow to numb my head for a few hours.

The hair loss only really started on day 16 so hopefully it will calm down soon or it will all be gone by the end of the week. The hospital think I'm crazy to bother with the cold cap as it is so they will def think it if I continue to use it with a bald head!!


Dx 6/2005, IDC, Left, 2cm, Stage IIA, Grade 2, 0/11 nodes, ER+/PR+, HER2- Dx 5/2020, IDC, Left, 1cm, Grade 2, ER+/PR+, HER2- Chemotherapy 11/16/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/1/2021 Arimidex (anastrozole) Radiation Therapy External: Lymph nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Chemotherapy AC Surgery Mastectomy: Left; Reconstruction (left): Silicone implant
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Dec 6, 2020 05:38PM JoW888 wrote:

Hi Everyone, thought I would check in as I haven't been here in a while.

Today is day 17 for me. Had my first infusion of TC on 11/20/20. For several days after that I was fine until about day 5. I haven't experienced any nausea to date but who knows what the next 3 infusions will bring. From days 5 through 9, the main thing that bothered me was my tummy. I had pressure buildup and for a couple of days, even felt like it was distended. I started taking Miralax and GasX and they helped.

Other side effects I've experienced:

- some fatigue and weakness but was back to normal around day 10

- night sweats... Urggghh!!! plus lots of interrupted, restless sleep. Last night was the first night I was able to sleep for several hours straight after taking a prescription sleep aid... Yay!

- more hair shedding. I know this was coming but the reality has set in and will have to get the clippers out real soon and have a grand ceremony of it on the back porch!

My next infusion is Dec 14. I'm not looking forward to it because I feel normal now but I'm also looking forward to it because I want to get it knocked out.

Take care and you all are in my prayers!

Jo in TX



Dx 9/15/2020, DCIS/IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Dec 8, 2020 07:06PM Juju-mar wrote:

hi JoW888,

My first infusion was similar to yours. The GI stuff was uncomfortable. I too had no nausea, no vomiting. One day of fever. Some brain fog and fatigue. Today I completed my 4th round of AC and each 14 day cycle was very similar. In fact the 3rd round I felt almost normal! Only a few days of GI distress. And a little tired. I hope it goes as smoothly for you 😊 I begin Taxol in 2 weeks, so praying I respond well to that med. Best of luck to you.

Julie

Dx 8/27/2020, IDC, Right, 6cm+, Stage IIIA, Grade 3, 2/4 nodes, ER+/PR+, HER2- Surgery 10/2/2020 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 10/27/2020 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Radiation Therapy Whole-breast: Breast, Lymph nodes
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Dec 10, 2020 09:09AM Rainyday7 wrote:

I had my 2nd tc on Monday and so far I feel so much better than the first one. I did the Neulasta injection yesterday afternoon and didn't get the awful back pain I got last time just very dull ache. My wbc count was better than before I started chemo so it must be working.

Still have a red face but that could be the roaring fire!

Dx 6/2005, IDC, Left, 2cm, Stage IIA, Grade 2, 0/11 nodes, ER+/PR+, HER2- Dx 5/2020, IDC, Left, 1cm, Grade 2, ER+/PR+, HER2- Chemotherapy 11/16/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/1/2021 Arimidex (anastrozole) Radiation Therapy External: Lymph nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Chemotherapy AC Surgery Mastectomy: Left; Reconstruction (left): Silicone implant
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Dec 10, 2020 09:33AM marie914 wrote:

That's great Rainyday! I am about 14 days out from 2nd TC and feeling pretty normal. My taste buds just came back yesterday - almost all the way. Before that nothing really tasted good. So I have 9-10 days until they go away again. :)

Jo - I was the same way. Not looking forward to it now that I am feeling better but just want it done.

My bone pain was better too this time. I had it in my knees and pelvis the first time and the second time a little in my knees.

My hair is still here. I lost a lot of it but I can wear it in a loose ponytail and people don't notice unless they know me pretty good. I usually wear a ball cap when I go out though. I have used serum on my eyebrows and lashes and they haven't fallen out yet but I heard they are one of the last ones to go. I have lost hair other places - good places though - upper lip and legs and underarms, etc.

Hope everyone else is doing good. We can get through this chemo. I have 2 more left. Also my expander exchange surgery for my left breast implant is scheduled for February 1st. I had surgery before they knew I needed chemo so I had my expanders almost filled and they kept it up.

Have a great day!

Dx 7/31/2020, DCIS/IDC, Left, 2cm, Stage IIA, Grade 2, 0/8 nodes, ER+/PR+, HER2- (FISH) Surgery 9/14/2020 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Tissue expander placement Chemotherapy 11/6/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 1/31/2021 Reconstruction (left): Silicone implant Hormonal Therapy 2/8/2021 Femara (letrozole)
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Dec 10, 2020 09:35AM DanniB wrote:

Hi everyone,

It is day 6 for me after first taxol. Avoided nausea (took meds on the clock the first 3and a half days), but had seriously strong muscle / bone pains on days 3 and 4. The meds took some edge off but the hot water bottle has been my best friend throughout. 8 days till next session.

Hope all are well. D x


Dx 9/25/2020, DCIS/IDC, Right, 1cm, Stage IIA, Grade 2, 2/4 nodes, ER+/PR+, HER2- Surgery 10/16/2020 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 11/27/2020 Taxol (paclitaxel) Radiation Therapy 2/15/2021 Whole-breast: Breast, Lymph nodes Hormonal Therapy 3/1/2021

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