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Topic: October 2019 Chemo Club Members

Forum: Chemotherapy - Before, During, and After —

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

Posted on: Sep 27, 2019 12:32AM - edited Nov 8, 2019 12:07PM by Michelle94904

Michelle94904 wrote:

Hello BC Thrivers and Warrior perSisters (& a few men.) Since my first chemo is October 1, I'll start our October 2019 Chemo Club group - please introduce yourself with your 10/19 start date to become a charter member in OCC19

EDITED in November - this is a great group for all who started Chemo in October 2019 - since we're all going through similiar Side Effects (SEs) - but all are welcome to visit and share. Sending all going down this path strength and love!

Hi, I'm Michelle, in Marin County/NorCal (over the Golden Gate Bridge). Wish we weren't in this club together, but glad we're all here together. Hope to check in, compare notes, and take comfort that we're not alone going through this unfortunate action plan. My cousin (by marriage) and I are going through our BC treatment side-by-side, except she's not doing chemo so suddenly I'm a lone chemo warrior, and I would love to compare chemo notes - and of course to swear about how much we hate breast cancer together.

Had my "chemo class" aka Chemo Teach this afternoon ... now my upcoming start date is real, along with all the possible chemo side effects; the next 4 months sound pretty hairy (make that hairy with loss of hair too?)

My plan is for TC 4x every 3 weeks... Long story, but I didn't ever think chemo was an option for my stage 1 BC treatment plan, per all my doctors and all indicators. I already have my radiology tattoos and positioning pillow all set, plus have made self care radiation treatment plans for the next 3-1/2 weeks (mostly lots of movies during the Mill Valley Film Festival). Was eagerly looking forward to the end of my BC treatment in October. SURPRISE, a 4 month delay 'til the end of my radiation, probably ending January 2020 now. My second Oncotype DX test result came in last Friday 9/20 - 29 score - although my doctors didn't even KNOW a 2nd Oncotype DX test had been submitted, after my first score was a 9. UGH. F*$% cancer indeed.

Yes I'm Cold Capping. I'll finalize the Dignicap or Penguin Cap decision tomorrow when I talk to insurance case manager.

DH is coming with me first time to drop off/pick up (and staying if I do Penguin Caps), but don't think I want a "chemo buddy" otherwise, think reading or watching a movie sounds better (especially if doing DigniCap). Heard that endorphin-releasing movies/books are highly recommended, I am going to bring Amor Towles "Rules of Civility" which I've been wanting to read since "A Gentleman in Moscow" which I adored.

So grateful for the awesome list from this community (things to gather before/tips). My weekend will include making my chemo travel kit and shopping for essentials to get this chemo party started.

So that's who I am and why I'm here. Glad/sad you're here with me in October! Looking forward to meeting our OCC19 community.

We can do this together. Sending much love and strength to you!

Dx 7/5/2019, IDC, Left, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Sep 27, 2019 07:16AM godisone wrote:

Hey Michelle! Its just the right time that you made this group. October is the Breast Cancer Awareness Month and here we are spreading awareness.

So with me joining in you are not a loner anymore. Let's see who all join us.

Love and hugs.

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Sep 27, 2019 10:44PM - edited Sep 30, 2019 09:50PM by Maya12

Hi, I am starting chemo October 2 (six rounds of TCHP) at MD Anderson here in West Houston. There is a lot of information to absorb and since I hear quite different experiences, I really don't know what to expect. Thankfully, my life has been so busy since diagnosis, I haven't had a chance to really panic yet! and my biggest issue is that I am having so much trouble weaning my baby. She is just not ready to be weaned :( and I truly hate cancer because of this



Dx 9/6/2019, IDC, Right, ER+/PR+, HER2+ (IHC) Targeted Therapy 10/2/2019 Herceptin (trastuzumab) Targeted Therapy 10/2/2019 Perjeta (pertuzumab) Chemotherapy 10/2/2019 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Sep 28, 2019 05:31AM SondraF wrote:

Hi all - was waiting for this to open up :)

I will be joining (officially) mid-month as I have one or two more tests to wrap up, but the doctors want to do this parallel to the chemo starting next two weeks. Bit of an odd-duck here as I am an ex-pat American in the UK, but I really want a place where I can connect with people (and spirit!) from home, since I will get the UK version in person. As such, until I meet the oncologist (next week I think) I don't have my hormone profile yet, or know what they will be treating me with, but I suspect its going to be hard core all the way. Next two weeks I switch to the chemo hospital, where they will do all the pre-teaching, testing, and fit me with a PICC line, see if I am suitable for any trials, and I get briefing on the other services available (drop in yoga, psychologist, etc). Cold capping is available, and I think I will give it a try - I didn't spend 12 years in Alaska and 3 in Minnesota to not have a high tolerance to cold!

Chemo hospital is St Barts in City of London - but in the brand new wing with city views and lots of light and air. Fun fact - the hospital was founded in 1123, which is kinda cool if you think about it. Its so old and survived so much there is even a museum on the grounds.

I'm also spending time this weekend making up my chemo list - thank god for the resources here - and thinking through how we move some furniture around to improve the flow of the space if I am going to be spending so much time at home. Oh and sort out flu shot stuff for me and partner - I will probably WFH entirely once this starts because illness moves like wildfire here in open plan offices/public transport, but I don't need OH bringing it home from his office and commute too!

Dx 9/27/2019, IDC, Right, 5cm, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- Targeted Therapy 11/29/2019 Ibrance (palbociclib) Hormonal Therapy 11/29/2019 Femara (letrozole), Zoladex (goserelin)
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Sep 28, 2019 09:11AM - edited Sep 28, 2019 09:16AM by Kitkat8074

Hello Ladies,

I will be joining you all, as well. Wish I could say it's my first time, however, my TNBC stage 3C dx has come after my initial HER2+ Stage 2B dx in January 2019. I had completed 12 Taxol and 3 AC chemo rounds when I found the new tumor on my left clavicle. There is also a tumor in my left armpit.

I finished the 4th round of AC August 16th. I begin new chemo Tuesday, October 1st, Carboplatin and Gemzar. One round a week for two weeks, then every 3 weeks for at least 6 total rounds. All will depend on whether the tumors respond to treatment.

All previous treatment plans, double mastectomy and radiation, are on hold. This was a devastating blow as I felt so close to putting this behind me and moving forward. Now I'm back to square one...

My children are very supportive but, as you can imagine, also devastated by this new dx. MO is hopeful but I could hear the concern in his voice when we discussed dx and treatment. His usual chipper and confident demeanor was not there when he walked into the room. I think it was as much of a blow to him as it was to me.

We plan on an aggressive attack, I'm referring to as Shock and Awe, to kick this new mutated cancer in the butt.

Good news, if you can call it that, is it hasn't spread to any organs. I have an MRI of the brain scheduled for next week as well, as I have been having nonstop headaches for almost 2 weeks now.

Research I've done on the internet has said the most likely place TNBC metastasizes to, is the brain. It's concerning and scary. The pain is like a nagging toothache, always there but not debilitating.

I have been lucky. I had no side effects through my first 16 rounds of chemo. I didn't even lose all of my hair, but I did shave it off anyway. It's still holding on but a lot thinner than it was. I worked everyday through my original treatment, even the day of chemo when I'd go to work after, and haven't missed one day since I started this journey.

I fear these next rounds of chemo won't be as easy, though.

I'm sorry for long post. This is the once place I can say how I feel without the guilty feeling of hurting my family or putting too much on them. They are scared, as am I, and I don't sugar coat anything as I need them to be educated and understand the reality of my stage 3C TNBC. It's certainly not a death sentence but it is more aggressive than my two previous battles with this disease.

I am praying for you all that your SE are easy to control and minimal at best

Dx 8/25/2016, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (DUAL) Hormonal Therapy 8/25/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 9/3/2016 Lumpectomy: Right Radiation Therapy 10/5/2016 Multi-catheter: Breast Dx 1/22/2019, IDC, Left, 2cm, Stage IIB, Grade 2, ER-/PR+, HER2+ (IHC) Chemotherapy 2/28/2019 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel)
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Sep 28, 2019 11:29AM Michelle94904 wrote:

Yay Godisone. Thanks for the kind comment and for joining me and the group.

Hi Sondra - all ducks odd and otherwise are welcome in the OCC! We're all in this together! Your treatment places - both hospital and home - sound lovely and supportive. I have loved taking advantage of all the mind-body-spirit practices offered to Cancer Warriors in our community, I hope you enjoy seeking out what fulfills you! (Jin Shin Jyitsu was something I hadn't ever heard about but offered in our Cancer Care, and have done that ancient healing art, similar to accupressure, twice now with another on the calendar. Grateful to have returned to my yoga practice.)

Ok KitKat, I am sending so much strength, love and light. I can't even imagine going through this again. Thank you for sharing, we are here for you but we will also look to you to lead the way as an experienced chemo thriver. I'm also hoping and praying that the headaches are from all the stress you're going through and nothing more!

My update: I did decide on DigniCap over Penguin Cold Caps, although was strongly advised that in our cancer care unit's experience, Penguin result in even less hair loss than DigniCap. I opted for ease of treatment instead, I have a lot of (short) hair so some thinning is ok with me. Would rather spend 2 uninterrupted hours watching a movie or reading a book than interruptions every 25 minutes by my chemo buddy/DH, that's me. Will share how that choice goes.

I'm spending the weekend going through the chemo checklist and sharing lots of love and laughter with friends and family. Using my three-drinks/week allotment tonight at a Tiki Bar, my BFFs and I are planning on sharing a Scorpion Bowl, that sounds like the right drink for the week. And comedy show after dinner, getting those endorphins flowing for Oct 1st.

Cheers for a good weekend. xoxo, Michelle


Dx 7/5/2019, IDC, Left, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Sep 28, 2019 11:46AM Oncisanchored wrote:

Hi all,

I am new, and finding this so comforting to read stories, support, and advice.

Stage 3 IDC, left Mx 5/2019 Chemo with A/C every 2 weeks x4 Started Taxol 8/29 with plan for x4 every 2 weeks; Radiation simulation 10/28/2019

After 2nd treatment of Taxol only, have LOTS of neuropathy symptoms, feet and hand numbness and tingling, thigh and a little upper arm weakness, imbalance, tipping over forward with standing and to the side with turning,etc.

This freaked me out, and really questioning whether my nervous system was worth sacrificing for an unknown statistic of 2 instead of 4 Taxol treatments and possible recurrence. I discussed all of this with my med Onc who ultimately said that the symptoms were all deconditioning and that whether to proceed with the last 2 treatments were more about my state of mind, than the statistics (which she didn't know). She went on to say that I needed to think about if I didn't proceed with just 2 further treatments of Taxol and I had a recurrence that I would always wonder if I had done everything I could have. Yikes! So a decision that isn't completely informed and if I recur, which I could no matter what, would be my fault!

Nervous about my nervous system. Any advice?!

Thanks!


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Sep 28, 2019 12:10PM Kitkat8074 wrote:

Oncisanchored, everyone is different with SE. I, myself, didn’t have any side effects except some hair loss. Look into the threads about side effects. So many have the same as you and great advice on how to help with them, such as icing before, during and after.

We are in this together and will provide support, our experience and advice. You know your body best. Remember that. If it doesn’t feel right, it usually is a sign.

Did you have any genetic testing of your tumor? This usually provides information about recurrence chances. I did 12 rounds of taxol, on a weekly regimen, then 4 rounds of AC. I was HER2+ though.

What are your tumor markers? Are you Hormone positive or negative? are you HER2 positive or negative? Or triple negative

Dx 8/25/2016, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (DUAL) Hormonal Therapy 8/25/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 9/3/2016 Lumpectomy: Right Radiation Therapy 10/5/2016 Multi-catheter: Breast Dx 1/22/2019, IDC, Left, 2cm, Stage IIB, Grade 2, ER-/PR+, HER2+ (IHC) Chemotherapy 2/28/2019 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel)
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Sep 28, 2019 01:11PM - edited Sep 28, 2019 01:18PM by nanceliz529

Hi all, I've been quietly watching from the sidelines and waiting for the October Club to form :)


I'm NE, 32 years old from New York City, moved to Los Angeles almost a year ago, diagnosed on 8/2 with left breast IDC, IIIA, ER+/PR+/HER2-

A <2cm mass and a lymph node that would only require surgery and radiation quickly turned into "6cm and several nodes" needing chemotherapy. I did not react well.

I start chemo 10/2...TC x 4 every three weeks, although my doctor is pushing me to six if I'm responding. This will be followed by lumpectomy (as of now-things change by the minute) and removal of any affected lymph nodes, then 6-8 weeks of radiation. I also just finished an immunotherapy / radiation clinical trial.

Unfortunately this isn't my first rodeo. When I was 16 I was diagnosed with a completely unrelated (bone) cancer and because Doxorubicin (Adriamycin) was part of that treatment plan (along with Cisplatin and Methotrexate), they can't give it to me this time around. Something about a lifetime maximum? I had to have part of my femur removed and have been dealing with surgeries and fracture fixations since then and everything has shifted out of place so I'm going through that at the same time as this but....going to try to handle this cancer first because....one thing at a time. No family history of cancer though and genetic testing showed I have no higher risk than anyone else for any cancer. Both times I was just told it was "bad luck."

I ultimately decided to do Penguin Cold Caps (this vendor was my only option) because I can't imagine going through the trauma of losing my hair again (I know how this sounds but Taxotere has a lot of bad press out there on permanent hair loss) but for some reason I've also been struggling with a lot of shame this time around. I initially said I wasn't going to do chemo and they told me that I could try CMF + Taxol x 12 but that they don't recommend it for me. I figured if I'm going to do chemo, I'm not going to waste my time and might as well go for the TC. I've been quietly reading posts on here and it's been so helpful--I've done nothing but compile lists of things that the boyfriend is now out buying and just getting everything ready for the big day. If you guys find any tips on dealing with Taxotere or Cyclophosphamide please send my way! I feel like because I've kind of gone through this before I know what to expect but rational me knows that I'm not 16 anymore and these chemos are different and there's no way to know what to expect until Wednesday.

Oncisanchored- I hear that icing hands and toes during treatment may help (it's what I plan on doing during the Taxotere portion) and also L-Glutamine and B6 but obviously ask your doctor if it's okay for you to take any of that first!



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Sep 28, 2019 05:13PM Missmom79 wrote:

hello Karen here. I was diagnosed with IBC on August 12th 2019 and idc 2.5cm and scattered DCIS. I just had a petscan in the 20th and all clear. Thank god. So that outs me at stage lllb and I start chemo on October 9th, 8 days before my birthday 😕. I get my port placed on October 1st and I don’t want to be put to sleep but I have heard some woman have had to be put to sleep and some have not. So I’m not sure what to think. My first chemo will be adriamycin aka red devil.

Dx 8/15/2019, DCIS/IDC, Right, Stage 0, Grade 3
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Sep 29, 2019 03:05AM - edited Sep 29, 2019 03:16AM by SondraF

Hey Karen, been watching you 'progress' through the diagnosis - glad your scan came back clear!

This looks like a group with quite a bit going on - second rounds or more advanced stages. I don't have a confirmed stage yet as my CT scan picked up a suspected bone met, but its right where I have had a back injury since June that I know the exact action that caused it and it has been improving by leaps and bounds since I got a decent chiro and not the crappy PT who made it worse through August. So they are waiting for the bone scan results (done last Tuesday) and will do an ultrasound on the spot to correlate results. Those tests, plus the results of the second biopsy of the armpit lump, are outstanding.

Forgot to put up my 'known' stats - IDC, 5cm, right side, likely node involvement (no way that thing hurts that much for it to be a cyst). Prior breast reduction in '99 so I can't feel a damn thing and already know how drains work - I got the surgery part covered, just need to get through the chemo.

In interior decorating news, I think we are going to get a new couch for the living room area because the one that came with this rental is awful and uncomfortable to lie on, so we never sit down there and effectively only use the top two bedroom spaces - I want to have that extra place to go for either myself or OH as a change of scenery or a place to be at least vertically separated from each other if needed. Just have to see if we can get it out the door and into the backyard shed.

Dx 9/27/2019, IDC, Right, 5cm, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- Targeted Therapy 11/29/2019 Ibrance (palbociclib) Hormonal Therapy 11/29/2019 Femara (letrozole), Zoladex (goserelin)
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Sep 29, 2019 06:37AM RadQueen wrote:

Hi Guys, I start my Chemo Sept 30 tomorow so I would rather be part of the Oct.Group than the last of the Sept Group. Hope that's OK.

Am Facing 4 treatments of the AC protocol once every 21 days followed by 12 of the T once every week. Got my port put in 11 days ago, everything went fine, but am silently freaking out about starting Chemo. I hate needles and shots. The area just under my port is still numb, hopefully it will stay that way for the duration if it hurts when they put that darn needle in it will get ugly fast. But having to get a shot every week or more is getting to me. I know I also have to have blood drawn every week but to get an additional shot... Nope Don't Like It!!!

I know I have to do this but darn it sucks.

Dx 6/6/2019, IDC, Left, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 8/19/2019 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Free TRAM flap; Reconstruction (right): Free TRAM flap Chemotherapy 9/30/2019 AC + T (Taxol)
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Sep 29, 2019 08:02AM Kitkat8074 wrote:

Redqueen, the needle sticks get easier as the skin at the port will start to get tougher. They have freezing spray, I don’t use it because it doesn’t do anything for me, and lidocaine cream to help numb the area. Check into those.

The anxiety you feel is normal. We all feel it, myself included, and this is my second go round of chemo since my journey began in January.

Sondra, keep us updated as you know more. We are all here to support you through your treatment plan. The waiting is the worst part, I think, because we naturally think the worst.

Missmom, I was put to sleep during port placement. I can’t imagine being awake through it. Let us know how it goes and which way you decided to go.

Prayers for all, I think God is on overload for as much as I’ve been praying

Dx 8/25/2016, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (DUAL) Hormonal Therapy 8/25/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 9/3/2016 Lumpectomy: Right Radiation Therapy 10/5/2016 Multi-catheter: Breast Dx 1/22/2019, IDC, Left, 2cm, Stage IIB, Grade 2, ER-/PR+, HER2+ (IHC) Chemotherapy 2/28/2019 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel)
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Sep 29, 2019 12:23PM - edited Oct 19, 2019 10:02AM by Maggie007

This Post was deleted by Maggie007.
Dx 8/28/2019, IDC, Left, Grade 2, ER+/PR-, HER2+ Chemotherapy 9/24/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy Surgery 2/7/2020 Lymph node removal; Mastectomy: Left, Right; Prophylactic ovary removal
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Sep 29, 2019 04:28PM Oncisanchored wrote:

Kitkat8074,

Thank-you! Forgot to post my grade:2; and tumor markers HR+PR+ Her2-, so luckier than some. No genetic testing.

Given the severity and persistence of my SE's I've been referred to a neurologist. Hope to talk with him before I have to decide whether to have another treatment in 5 days. Listening to your body is good advice. It is scary when so little really known about CIPN's, especially the more rare motor ones.

Thanks, I really appreciate this forum, although feel a bit awkward with many with more to deal with than I.

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Sep 29, 2019 04:44PM Oncisanchored wrote:

Missmom79,

Good luck with your 1st chemo. Everyone is apprehensive to scared before it starts. Hopefully you'll sail through. Make sure to speak up if you don't, so any SE's can be addressed sooner rather than later.

RE: your port; I think it is fairly standard to use the same kind of anesthesia as used for colonoscopies; 2 short acting medicines. I would totally go with that. It isn't like being "put to sleep" for a surgery.

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Sep 29, 2019 06:02PM Kitkat8074 wrote:

welcome Maggie! Of course you can join us here. Glad you found us. How are you doing after your first treatment

Dx 8/25/2016, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (DUAL) Hormonal Therapy 8/25/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 9/3/2016 Lumpectomy: Right Radiation Therapy 10/5/2016 Multi-catheter: Breast Dx 1/22/2019, IDC, Left, 2cm, Stage IIB, Grade 2, ER-/PR+, HER2+ (IHC) Chemotherapy 2/28/2019 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel)
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Sep 29, 2019 07:12PM - edited Oct 19, 2019 10:02AM by Maggie007

This Post was deleted by Maggie007.
Dx 8/28/2019, IDC, Left, Grade 2, ER+/PR-, HER2+ Chemotherapy 9/24/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy Surgery 2/7/2020 Lymph node removal; Mastectomy: Left, Right; Prophylactic ovary removal
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Sep 30, 2019 09:49PM Kitkat8074 wrote:

Maggie, I start Carboplatin and Gemzar in the morning. I completed 12x Taxol and 4x AC from February through August of this year. I’m nervous because I had no side effects from Taxol/AC, some hair loss but never lost it all.

One day at a time is all we can do, some days it’s one hour at a time

Dx 8/25/2016, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (DUAL) Hormonal Therapy 8/25/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 9/3/2016 Lumpectomy: Right Radiation Therapy 10/5/2016 Multi-catheter: Breast Dx 1/22/2019, IDC, Left, 2cm, Stage IIB, Grade 2, ER-/PR+, HER2+ (IHC) Chemotherapy 2/28/2019 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel)
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Sep 30, 2019 10:09PM - edited Oct 19, 2019 10:02AM by Maggie007

This Post was deleted by Maggie007.
Dx 8/28/2019, IDC, Left, Grade 2, ER+/PR-, HER2+ Chemotherapy 9/24/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy Surgery 2/7/2020 Lymph node removal; Mastectomy: Left, Right; Prophylactic ovary removal
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Oct 1, 2019 12:44AM SondraF wrote:

Good luck today Kit!

BTW - are you at Cancer Centers of Nevada for treatment? I did high school in Vegas - a friend started her career in clinical trials management there (and dad gave a bunch of blood there too).

Maya12 and Nanceliz, I think you two are up next on Wednesday. Best of luck!

Dx 9/27/2019, IDC, Right, 5cm, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- Targeted Therapy 11/29/2019 Ibrance (palbociclib) Hormonal Therapy 11/29/2019 Femara (letrozole), Zoladex (goserelin)
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Oct 1, 2019 07:37AM Kitkat8074 wrote:

Thanks Ladies, I’ll keep you Oates on how it goes.

Sondra, comprehensive cancer is where I go. Eastern & Flamingo. Dr. Braiteh is my MO. He has a lot of awards for groundbreaking treatment. I love it there, everyone is so nice and caromg

Dx 8/25/2016, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (DUAL) Hormonal Therapy 8/25/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 9/3/2016 Lumpectomy: Right Radiation Therapy 10/5/2016 Multi-catheter: Breast Dx 1/22/2019, IDC, Left, 2cm, Stage IIB, Grade 2, ER-/PR+, HER2+ (IHC) Chemotherapy 2/28/2019 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel)
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Oct 2, 2019 09:20AM - edited Oct 2, 2019 09:21AM by nanceliz529

Ok here we go....! Will keep you guys posted. So nervous!

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Oct 2, 2019 12:04PM SondraF wrote:

Good luck nance - let us know how you do!

I got the call for the medical oncologist appointment today for Monday 9 am at the cancer specialist hospital, so this show is getting on the road. Tomorrow I call insurance about using my private plan to get the hell out of that god awful first hospital and whatever is going on up there because I very much DO NOT want my surgery there and have been unhappy with the level of response and professionalism.

Dx 9/27/2019, IDC, Right, 5cm, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- Targeted Therapy 11/29/2019 Ibrance (palbociclib) Hormonal Therapy 11/29/2019 Femara (letrozole), Zoladex (goserelin)
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Oct 3, 2019 09:55AM nanceliz529 wrote:

Hi everyone!

I was told I wouldn't need a port but I knew that would quickly change when they saw what they were dealing with...they couldn't even draw labs yesterday so I knew getting an IV would be worse and so when I got into the actual infusion room I requested an ultrasound tech to get it in and he got it one shot. Hoping I can get away with this for future visits. The infusion part itself went well...had an Ativan beforehand and my premeds were like 15 mins. Also had a Lupron shot to try to save my ovaries since uhc insurance decided I need to be infertile before they consider helping me. Then they went in with Taxotere first and there was no allergic reaction so we increased it and it was done in about an hour then Cytoxan was even quicker-about 30 mins. I think they said 1 and 2 will be slow and 3 will be normal infusion time. At the end they put the Neulasta on my arm, and took a Claritin when I got home to help with those side effects and I think I plan on taking daily? I slept with the thing on my arm just fine and was able to prevent getting it wet in the shower.

Along with this came the cold cap experience and thankfully I had the cold cap boards prepare me but I didn't feel a thing and I wasn't uncomfortable at all. If anything I was hot and at one point just gave up on the electric blanket and I was over the neck pillow long before that. Obviously this just made me think it wasn't on properly or it wasn't cold enough so I got really stressed and have a few wigs on standby because now I'm really paranoid! After 4.5 hours of post cooling in the center we came home and I was fine until I got a little stressed over a food delivery person not being able to find my house and threw up but it was so minimal and mostly nausea and but I took one of the nausea pills and I was fine after that. I've been trying to find on boards what to expect but I can't seem to...I think with TC you get sick on or about day 3...but I'd like to know what to expect as far as how long it takes you to bounce back. I plan on working for now but I also know that the effects are commutative and that it might not last long...anyway more updates as we move along the next few days....I hope everyone is making it through okay whether you've already started or your turn is yet to come but you got this!!!!!

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Oct 3, 2019 11:38AM SondraF wrote:

Good job nance! I read on another thread about how journaling can be really helpful through chemo so you can track when your down days are or if you are in a down day, when you can start to feel like you are pulling out of the tailspin. Perhaps give that a go?

Dx 9/27/2019, IDC, Right, 5cm, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- Targeted Therapy 11/29/2019 Ibrance (palbociclib) Hormonal Therapy 11/29/2019 Femara (letrozole), Zoladex (goserelin)
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Oct 3, 2019 09:43PM - edited Oct 3, 2019 09:50PM by SarahSmilesatMe

Hello Everyone - I'm new to the Community. Thanks to all in advance for posting and offering advice and guidance!

A few details / introduction - 58 years old, IDC; Stage 1A; Grade 3. Onkotype score was high .... so, first chemo treatment of Cytoxan and Taxotere was on October 2. Four treatments total every 3 weeks. I'm using the Penguin Cold caps. Tried to tough it out with the Nature's Cure cold socks, but I gave up after 30 mins with admittedly a couple of breaks in between! I'll work on that endurance before the next infusion.

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Oct 4, 2019 06:41AM RadQueen wrote:

Hi Gals just a quick update day 5 post 1st chemo AC. The stick to my port hurt like hell, and yes they used the freeze spray. The nurse said it hurt so much because it is still swollen only 12 days old. She said next time it should be better. After the infusions she told me to go home take the anti nausea meds and go to bed. Did that but had hubbie wake me every hour or two to drink at least 8oz of water. I drank the better part of 2 Lt. before I went to Chemo. I started drinking it very early in the morning and my infusion did not start till 1pm. Ate a light dinner, took the meds again and went back to bed. By 10pm my urine was clear no more red. Woke up next morning took meds Z and P no nausea, ate a light breakfast. and chilled. Felt fine all day just the worry of when the shoe would drop or would it? Had a light lunch, but did not take the anti nausea meds and then stopped them for the rest of the day. Had a good dinner and went to sleep feeling fine. Woke up day 4 ate some breakfast and started to feel queasy, took meds and got back into bed and fell back to sleep for most of the day. Woke up again feeling better. Had my blood drawn to go see the Med Onc. on Monday and see what my count is. Trying to drink at least 8oz of water every hour I'm awake to keep hydrated and push this mess through my system.

So here I am at the start of day 5.

Dx 6/6/2019, IDC, Left, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 8/19/2019 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Free TRAM flap; Reconstruction (right): Free TRAM flap Chemotherapy 9/30/2019 AC + T (Taxol)
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Oct 4, 2019 08:26AM - edited Oct 4, 2019 08:27AM by DMHGF

Hi all

I've been on the boards since I got the news but was not expecting to end up on this one. Stage 2 grade 2 IDC, node negative Er+ Pr+ Her2-. I was all set for radiation and hormone treatment until Oncotype came back. I have port placement Tues 10/7 and dose dense chemo a & c starting Wed. going every 2 weeks for four cycles, then Taxol weekly for 12 weeks THEN radiation for 6 weeks. SURPRISE! I was so not prepared for this so I'm kind of in crazy mode trying to get ready.

I am terrified by the port pain mentioned by so many. I am getting my 1st infusion 24 hours after my port is put in! They told me it was going to be "especially uncomfortable" the first time because of this. It sounds like "uncomfortable" is waayy understating it???

My family is rallying to get me a suite set up in a spare room so I can stay out of the fray when I'm not feeling well, and not have to be in my dark bedroom. They are awesome. I haven't even had a minute to look into cooling caps or wigs etc. but I did get the shopping list of lotion and mouthwash etc that I will be putting together this weekend in prep. Thank God I am so busy otherwise I might be losing it more often. Haven't had a good cry yet but I'm sure it's coming.

So glad you all are here to bounce this experience off of. I know it will be a lifeline for me. ((HUGS)) to all. We've got this!


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Oct 4, 2019 12:05PM Michelle94904 wrote:

Hi all - Welcome to all the newbies - sorry you're here but grateful that there are so many Thrivers and Warriors supporting each other in here. No rules apply except love and strength for all.

My Chemo #1 Update: My first day of chemo was Tuesday 10/1 - the coldcapping was the hardest part I was surprised to learn! Did Dignicap and almost cried when it got to 3degrees celcius, stamped my feet but couldn't get up because of being tethered to machine and IV. Nurse gave me 2 tylenol, and i did a 7 minute breathing-through-pain meditation (I heart InsightTimer), and guess my head was frozen by the time that was over because I felt better after that.

So grateful for DH being there with me through Chemo - I didn't think I'd want anyone there but needed him to get me tea, pick up the magazine (read 10!) that fell on the floor etc. Asked him to please plan on coming to the other 3 too.

Got home and had a 99.5 fever and prickly hot face - nurse said allergic reaction to Taxatere, took benadryl and it seemed to help. Also had scratchy throat. Could be from the steroids too, who knows. All ok and normal though.

Wednesday came and went - so grateful for a Tai Chi class for Cancer Warriors offered through Marin Cancer Center. Helped center my exploding icky energy from steroids. Did get work stuff done day after chemo, surprisingly.

Thursday woke up at 4:30 feeling like poop. Meditated, practiced gratitude, walked the dog, took a shower, all trying to feel better. Nope kept feeling worse - and by mid-day hit the chemo wall face first. Felt like total crap. Went to an exercise for cancer class but when I got home I had a whole body meltdown. Took a nausea/dizziness RX and a 1/2 an Ativan and napped 3 hours. But did have a goal to go to the Mill Valley Film Festival and see Just Mercy last night, I think it was really great. Goals are important as is self care, I know!

Friday - feeling like a smiling poop emoji again today. Walked 2 miles with DH and dogs. Strongly recommend getting out and getting your heartbeat going even when you feel like crap. Took 2 tylenol for a headache, took claritin for body aches from bone marrow booster shot, but pushing through the rest.

That's my update for my first chemo so far... TC 4x every 3 weeks like Sarah, #TwinningIsWinningSillyHeart

Hope you all have good things planned for the weekend. I am going to *try* to see the Mill Valley Film Festival screenings that I had bought tickets for, when I thought I would be on RADIATION this week and not CHEMO. DevilGrateful for this community. Love and healing thoughts to you all, brave October Warriors.


Dx 7/5/2019, IDC, Left, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Oct 4, 2019 12:36PM Honey2289 wrote:

Hi Michelle, hope you start feeling better soon so you can make it to the film festival! I just moved from the Bay Area to LA in July and miss it dearly.

Curious why you had 2 Oncotype tests done? I haven't heard of that before and wonder if that's something to ask for.

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