Topic: Treatment Zoom Meetup (Thursdays) place to keep chatting

Forum: Managing Side Effects of Breast Cancer and Its Treatment —

Posted on: Mar 31, 2022 04:32PM

Posted on: Mar 31, 2022 04:32PM

moderators wrote:

Hey All, Join each other here to share between meetups!

To send a PM to the Mods: community.breastcancer.org/my/... Surgery 5/10/2022
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Mar 31, 2022 06:22PM sarahmaude wrote:

Thanks for making this board! I’m Cyndi in the support group. (SarahMaude was my basset hound when I was a child.)

Still feeling better and better, but ready for some pain meds after this long day

Hormonal Therapy 2/17/2022 Arimidex (anastrozole) Surgery 3/31/2022 Lumpectomy (Left) Chemotherapy 5/4/2022 Taxotere (docetaxel), Cytoxan (cyclophosphamide) Dx IDC, Left, 4cm, Stage IIA, Grade 3, ER+/PR-, HER2- Radiation Therapy Left breast
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Mar 31, 2022 08:19PM moderators wrote:

Hi Cyndi! So glad you're feeling better, but yes, listen to your body and take what you need. And take it easy these next few days!

To send a PM to the Mods: community.breastcancer.org/my/... Surgery 5/10/2022
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Apr 9, 2022 06:47AM - edited Apr 9, 2022 06:58AM by kathrynw1thasea

Hi, this is Catherine Wilson aka KathrynW1thase,

I'm hoping this is the right forum. I started losing my hair on screen shortly after the day 13 hair loss discussion. Well, I've pulled about a one gallon Ziplok baggie of hair as of 6:30Pm after treatment #2. Photo below. It turned into a scientific experiment with mom documenting the process in between fitsof laughter and clever dialogue. At one point I sent a photo of the pile of follicular refugees to my former stylist and his response was “you lost that much and still have a full head of hair by most people".

Challenge accepted! Thirty minutes later I had a balding spot in the back and almost all the darker greys were gone. The white hairs are hanging on for dear life. I used gentle fingers thru the hair, tighter fingers thru the hair, tugging hair, and eventually resorted to “my corgi is blowing his coat, got the vacuum" method 9(see photo below). The later wasn't as efficient but it did make a nice breeze flow across my scalp.

My advice, set an appointment to cut it very very short a day or two after day #13, it itches and sheds constantly. It's depressing to see them fall out in small numbers. Or have a really fun time pulling it out, letting others pull it out, make it a race to see who can pull out the most in a set time…have a great time celebrating that the chemo is actually working…this is your proof…that ever elusive proof we need so badly!

I'll sport a new look on Thursday just for y'all.

Surgery 2/15/2022 Lumpectomy (Left); Lymph node removal (Left): Underarm/Axillary Chemotherapy 3/25/2022 AC + T (Taxol) Dx IDC: Papillary/IDC, Left, 2cm, Stage IIB, Grade 3, 5/27 nodes, ER+/PR+, HER2-
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Apr 10, 2022 11:49AM sarahmaude wrote:

Kathrynnw1thasea, I love it! Your sense of humor in the face of (hair) loss made me smile with empathy.

I missed Thursday because I was at the attorney’s office signing closing papers on one of Mom’s assets. She died one year ago this month and I’ve been serving a thankless role as her estate executor. Will be thrilled to have this one behind me!

Quick update on me: I got my surgical path report back and it was the best possible outcome. Clear margins and negative sentinel node. I’m seeing my MO on Tuesday. There is a slight chance she’ll have my OncoTypeDx back. Regardless, we’ll be discussing my baseline bone density scan results that show I already have osteoporosis prior to any treatment effects. Ugh. I just thought I was healthy.

I’m trying to stop reading everything I can about my prognosis. Wasn’t too successful yesterday. My PR- seems to be more of a risk than either doctor mentioned. Also, my grade 3 scares me more than it did before.

It sounds like radiation will be important to zapping out as much of what’s left as possible. First appointment with RO on Friday. I don’t know who invented BC, but at this point, I’d like a talk with their manager.

Resolution today: shop so I have food in the house this week and take a walk to counteract my 57 year old brittle bones. And stop googling my removed tumor!!

Hormonal Therapy 2/17/2022 Arimidex (anastrozole) Surgery 3/31/2022 Lumpectomy (Left) Chemotherapy 5/4/2022 Taxotere (docetaxel), Cytoxan (cyclophosphamide) Dx IDC, Left, 4cm, Stage IIA, Grade 3, ER+/PR-, HER2- Radiation Therapy Left breast
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Apr 11, 2022 05:29PM moderators wrote:

KathrynW1thase, we can't wait to see your new look on Thursday! Sarahmaude, we missed you last week, but yay for clear margins and negative node! Small wins, right? We hope your appointment with your MO tomorrow answers more questions than it raises, we hope to see you and get the rundown this week Hug

To send a PM to the Mods: community.breastcancer.org/my/... Surgery 5/10/2022
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Apr 11, 2022 06:21PM beginagain22 wrote:

Cyndi,

So glad you got a good path report! The grade 3 gives me the sweats too. I see my MO tomorrow to get the game plan. Oncotype came back at 15. Not sure how much grade 3 plays into decisions there, I guess I find out tomorrow. My path report after surgery was 1.9cm tumor, about double what I expected. 1 micromet in sentinel node so my BSO took 10 in an ALND. 1 of the 10 had a sprinkling? Less than a micromet. Clear margins, surgeon was confident it was out. DMX looks great and closure is flat as a pancake. Feeling great and back to the office and the gym as of last Tuesday. Just anxious to see what tomorrow holds.

Gin

Surgery 3/18/2022 Cryotherapy (Left); Cryotherapy (Right); Lumpectomy (Left); Lumpectomy (Right); Lymph node removal (Left): Sentinel, Underarm/Axillary; Lymph node removal (Right); Mastectomy (Left): Modified Radical, Nipple Sparing, Partial, Radical, Simple, Skin Sparing; Mastectomy (Right): Modified Radical, Nipple Sparing, Partial, Radical, Simple, Skin Sparing; Prophylactic mastectomy (Left); Prophylactic mastectomy (Right); Reconstruction (Left); Reconstruction (Right) Hormonal Therapy 5/1/2022 Arimidex (anastrozole) Dx IDC, Left, 2cm, Stage IIA, Grade 3, 2/10 nodes, ER+/PR+, HER2- Surgery 5/25/2022
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Apr 12, 2022 10:40PM kathrynw1thasea wrote:

Sarahmaude,

All that glee melted down in the shower a day later, but I’m back in good spirits again. Now I’m trying to find a pattern for some fun hats to make from my fabric stash. I’m looking for something to give me some height to my caps. Mine is not a face for flat tops on scarves and hats. I need the illusion of volume and lift. I’m also not one who wears a lot of makeup. My skin freaks out with any type of foundation, but I could use some eyebrow and eye makeup tips.

Looking forward to Thursday

Surgery 2/15/2022 Lumpectomy (Left); Lymph node removal (Left): Underarm/Axillary Chemotherapy 3/25/2022 AC + T (Taxol) Dx IDC: Papillary/IDC, Left, 2cm, Stage IIB, Grade 3, 5/27 nodes, ER+/PR+, HER2-
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Apr 13, 2022 08:25AM sarahmaude wrote:

Catherine (and you can call me Cyndi here),

I’m now resigning myself to four rounds of TC. I (geek that I am) found an OncoType DX simulator and data table and know that I’ve got an incredibly low chance of escaping chemo.

I am not going to be naturally pretty without hair. In fact, I’m dreading seeing my scar from the bike accident I had in 1985. Please share any hat patterns you find. I’ve also got a lot of great fabrics in my stash. I’ve been reading enough to see that I’ll also be a sobbing mess when my hair is actually gone. I have to practice being okay with it, because I’m really not.

I asked my MO about cold capping and she said that most of her patients who’ve done it have below average satisfaction. My dad was one of the rare people who didn’t lose all of his hair with one of his multiple myeloma treatments. He did nothing and “only” lost 90% of his hair. He was so proud of that he just left it. He looked very strange with his wispy halo. My mom really wanted him to just cut it off. Any chance I’ll resemble him just makes me shudder.

I’m so glad to know I have company on this journey through the valley of pooon the way to survival. Hugs, and gentle, sisterly strokes to your head.

Hormonal Therapy 2/17/2022 Arimidex (anastrozole) Surgery 3/31/2022 Lumpectomy (Left) Chemotherapy 5/4/2022 Taxotere (docetaxel), Cytoxan (cyclophosphamide) Dx IDC, Left, 4cm, Stage IIA, Grade 3, ER+/PR-, HER2- Radiation Therapy Left breast
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Apr 14, 2022 11:28AM - edited Apr 14, 2022 11:29AM by kathrynw1thasea

Cyndi,

I can definitely relate to the hair loss anxiety. I made it to the office on Tuesday with much trepidation but folks were kind and encouraging. Unfortunately I'm having more side effects this round and I've stayed home since Tuesday. We definitely have to make adjustments to our routines and rest.

I will definitely share any patterns I find. I found a really interesting website called headcovers.com with all sorts of things of interest. Check it out.

See you soon,

Catherin

Surgery 2/15/2022 Lumpectomy (Left); Lymph node removal (Left): Underarm/Axillary Chemotherapy 3/25/2022 AC + T (Taxol) Dx IDC: Papillary/IDC, Left, 2cm, Stage IIB, Grade 3, 5/27 nodes, ER+/PR+, HER2-
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Apr 21, 2022 07:28PM sarahmaude wrote:

kathrynwithasea, missed you today. Hope all is okay with you!

Other Thursday Zoom friends, I enjoyed seeing and meeting those who I met for the first time today.

By the way, I listened to the first Rotten Melons podcast. It was very real, very funny, and quite explicit, though in a way I can completely relate. Great recommendation!

Hormonal Therapy 2/17/2022 Arimidex (anastrozole) Surgery 3/31/2022 Lumpectomy (Left) Chemotherapy 5/4/2022 Taxotere (docetaxel), Cytoxan (cyclophosphamide) Dx IDC, Left, 4cm, Stage IIA, Grade 3, ER+/PR-, HER2- Radiation Therapy Left breast

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