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Topic: Starting Chemo November 2021

Forum: Chemotherapy - Before, During, and After —

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

Posted on: Nov 8, 2021 11:47AM - edited Nov 8, 2021 11:48AM by Maddie322

Maddie322 wrote:

I haven't seen a thread for those of us staring chemo in November, and thought I'd start one. I've been lurking in the earlier Starting Chemo topics but thought it would be good to go through this with others.

Friday, 11/12/21 I will have a port placed - scared to death about what it will be like, even after reading others experiences in this community. November 17 begins infusion one of TC (Docetaxel + Cytoxan). I've been reading up on how others faired with this treatment. Wishing to be one of the lucky ones with few side effects.

The cancer center (I'm in Fairfax, VA) will have cryotherapy mittens and boots, which I plan to use to offset neuropathy (hopefully) and I will use a DigniCap cold cap to hopefully preserve some hair. I imagine I'll be like a human popsicle with iced feet, hands and the cold cap which stays on for up to 180 minutes after the infusion ends. I hope it's all worth it.

Everything seems to be happening so quickly. Diagnosed 8/26/21, lumpectomy 10/4/21, Oncotype Score 27 received late October and my MO determined I would benefit from chemo on 11/1. Not what I was hoping for, at all. But knowing that my mother had breast cancer twice in the 1960's helped me to accept the treatment. Chemo was not available for her during that time, or if it was, she was not offered it. I'm 65, not on any medications, pretty healthy if overweight a bit! I'd like to see 75 and be in reasonably good health.

Anyway, I've been reading all of the helpful information by the brave women who have gone before me and hope that some of us will be able to go this path together.

Dx 8/26/2021, IDC, Right, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery Lumpectomy: Right; Lymph node removal: Sentinel
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Nov 8, 2021 12:46PM Roo73 wrote:

Hi Maddie, thanks so much for starting this. I had thought of doing the same, but was worried I wouldn't have the energy to keep it up. I promise to contribute though.

Last week I started a 12-week course of weekly Taxol + Herceptin for a small HER2+ tumour that unexpectedly made its way to the lymph nodes. I'll add my details to my profile but am waiting on a bone scan for a possible met and don't want to jinx it! The side effects of my regimen are not supposed to be too bad. So far I've had a bit more hair shedding than usual but nothing serious, and some numbness in fingers and toes (a bit more worrying, that, so early in the treatment). And some bad mood swings, probably from the dexamethasone they give you along with the chemo to control nausea. I'm going to ask them to cut it down or skip it for round 2 tomorrow. I'll take nausea over mood swings any day.

Maddie, I hear you on the port. At first I said no way, but the nurse talked me into it, because the Herceptin infusions continue for a full year after the Taxol is finished. Also, so many people on these boards have said they were initially queasy about it but later happy to have it. I have good veins but they only have one arm to work with because of the lymph node surgery.

Also, judging from last week: the Taxol really burned; I could feel it entering the veins all the way up my arm. They slowed down the infusion which kind of helped (well, not really…). Maybe if it goes into a wider vein it will be better? I don't think the burning happens for everyone. It was a reminder that this is really toxic stuff. The other thing was that it was awkward to use my hand when I had to navigate the loo (which you will, with all that fluid going into you); it also nixed my plan to spend my time in the chair knitting.

If you're using the mitts I guess you won't be knitting though. I'm very curious to hear how that goes, as I'm experiencing some neuropathy already. Keep us posted! I've heard great stuff about the cold caps too.

It took exactly 4 months for me from callback on my imaging to starting chemo. It was a pretty awful wait, but hearing your story makes me appreciate that I at least had time to take everything in. I was VERY ready to get going last week.

My port placement is Friday too! Good luck; hope we can compare notes. Thanks again for starting the thread.

Dx 7/9/2021, LCIS/DCIS/IDC, Right, <1cm, Grade 3, 1/1 nodes, ER+/PR+, HER2+ (IHC) Surgery 8/11/2021 Lumpectomy: Right Targeted Therapy 10/31/2021 Herceptin (trastuzumab) Chemotherapy 11/1/2021 Taxol (paclitaxel) Surgery Lymph node removal: Sentinel
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Nov 9, 2021 06:36AM Maddie322 wrote:

Hi Roo73,


I hear ya on not having the energy for posting a lot on this site. I look at it as a place of first hand experience, somewhere to go and vent when I'm down or feeling alone, and in this case, going through CT with others and sharing our experiences when we feel able.

There are wide differences on everyone's experiences with getting the port placed. But almost everyone says after several days you don't even remember it's there, and it makes the infusion so much easier. That's what I'm hoping for and focusing on. Good luck with your port placement.

I hadn't heard about bad mood swings from the dexamethasone and it's good to know that's a possibility! Good luck with the bone scan. Will be sending good, positive vibes your way for a great outcome.

As for wearing cryotherapy mitts, booties and a cold cap, I have no idea how I'll fare, Maybe this is a good time to try meditation! I'm also wondering what trips to the rest room will be like. I hear that you should drink a lot during the infusion, and eat ice chips, so I imagine I'll master how to get to and use the "loo" !

Good luck with everything!

Dx 8/26/2021, IDC, Right, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery Lumpectomy: Right; Lymph node removal: Sentinel
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Nov 9, 2021 08:59AM Moderators wrote:

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Nov 9, 2021 03:03PM Roo73 wrote:

Definitely—it will be so great to have a place to vent… vent away! I found the other monthly chemo threads useful because they kind of walked you through the process in “real time". And we get to do the Happy Chemo Holidays too. You know, the holidays we all had to skip completely last year.

I hope we can find some people who are doing the TC like you are. To be honest, I've heard that my weekly Taxol + Herceptin is a comparatively easy ride in terms of side effects, as the Taxol is a smaller dose given more frequently. The down side is that you have to go in every week for 12 weeks, and then every three weeks for the rest of the year. It looks like people are able to continue to work, but if the hospital keeps scheduling treatments in the middle of my heaviest teaching day, I won't have a job left to do…

BTW they were happy to cut the steroid dose in half today, and said that if I still had no allergic reaction to the Taxol (I didn't) they would try cutting it out entirely if I wanted. I was pleasantly surprised that I didn't get pushback.

A hot compress on my arm helped a certain amount to manage the pain from the Taxol itself entering my veins.

If my clinic offered the cold capping etc. I would definitely give it a try. With my cocktail there's a small chance I will only lose a bit of hair, so I decided not to risk the cost and extra trouble to set it up myself. If the neuropathy gets worse, though, I will rig up something for my hands and feet. Seems to me there was a lady on one of the threads who had a DIY method.

You can take yourself to the washroom, IV stand and all. You just have to unplug the electrical supply on the drip But if you have to take all the cold stuff off too… I don't know. There must be a solution, because in addition to all the water and ice you should be consuming by mouth, you are getting large bags of fluid piped directly into your veins. For several hours.

Next stop, port.

Thank you, Mods!

Dx 7/9/2021, LCIS/DCIS/IDC, Right, <1cm, Grade 3, 1/1 nodes, ER+/PR+, HER2+ (IHC) Surgery 8/11/2021 Lumpectomy: Right Targeted Therapy 10/31/2021 Herceptin (trastuzumab) Chemotherapy 11/1/2021 Taxol (paclitaxel) Surgery Lymph node removal: Sentinel
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Nov 11, 2021 08:51PM Roo73 wrote:

Maddie, wishing you a calm and painless port placement tomorrow! Let us know how it goes.

Dx 7/9/2021, LCIS/DCIS/IDC, Right, <1cm, Grade 3, 1/1 nodes, ER+/PR+, HER2+ (IHC) Surgery 8/11/2021 Lumpectomy: Right Targeted Therapy 10/31/2021 Herceptin (trastuzumab) Chemotherapy 11/1/2021 Taxol (paclitaxel) Surgery Lymph node removal: Sentinel
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Nov 12, 2021 10:14AM Maddie322 wrote:

Thanks so much Roo73! I'm REALLY missing my morning cup of coffee, or even a glass of water for that matter. You have to fast for 8 hours prior. Leaving in an hour. Hoping it goes without a hitch and little pain. I know I'll be glad I did this when the chemo infusions start. I'll report back!

Dx 8/26/2021, IDC, Right, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery Lumpectomy: Right; Lymph node removal: Sentinel
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Nov 12, 2021 10:15AM Maddie322 wrote:

Thanks, Mods! Will join in the Zoom meet up as soon as my schedule calms down. Looking forward to learning from others.

Dx 8/26/2021, IDC, Right, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery Lumpectomy: Right; Lymph node removal: Sentinel
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Nov 12, 2021 02:39PM Roo73 wrote:

Yes! I got mine put in this morning, came home, wondered why I felt quite so awful… finally realized it was partly caffeine withdrawal!! Drinking a double espresso right now.

I hope your procedure went well. Mine went very smoothly, but I am a bit weirded out by how I can now feel the catheter. The nurse said I'll stop noticing within a day or two. I am going to go meet up with a friend so I don't sit here all evening feeling my port.

The doctor was wearing a camouflage scrub hat and could not have been more than about 14 years old. Or maybe it's just me getting older. He did a great job though—very gentle. I barely felt a thing.

Put your feet up and have a relaxing evening!

Dx 7/9/2021, LCIS/DCIS/IDC, Right, <1cm, Grade 3, 1/1 nodes, ER+/PR+, HER2+ (IHC) Surgery 8/11/2021 Lumpectomy: Right Targeted Therapy 10/31/2021 Herceptin (trastuzumab) Chemotherapy 11/1/2021 Taxol (paclitaxel) Surgery Lymph node removal: Sentinel
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Nov 12, 2021 10:07PM NNS121317 wrote:

I get my port on Thursday 11/18 (my son's birthday, he gets to spend it chauffering me around) and start dose-dense AC on Friday 11/19. I have long hair, and I'm getting it cut into a pixie on Tuesday. I didn't expect to need chemo, so this still feels foreign to me and I don't feel especially prepared.

Hope everyone is doing as well as possible! Eventually these treatments and side effects will be in our past.

Dx 8/30/2021, DCIS, Left, 5cm, Stage 0, Grade 3 Dx 8/30/2021, IDC, Left, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR-, HER2- (FISH) Surgery 10/8/2021 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy 11/19/2021 AC + T (Taxol) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Nov 13, 2021 01:34PM - edited Nov 13, 2021 01:39PM by Roo73

Hello NNS, so happy to have you on the thread, but sorry for the reasons behind it.

I didn't expect chemo either. My tumour was small but I guess he liked to travel (hope that stays in the past tense). It has been OK so far (2 weeks down out of 12) but I admit that my regimen is supposed to be easier on the system than yours. It is a lower dose, but administered weekly. Lots of bothersome little side effects, but nothing that leaves me unable to function. A lot of shooting pains in random places, like left ear, left ovary, right knee. Who knows?

The port felt weird on the first day but today (Day 2) I am not noticing it at all, apart from some pain from the incisions. The procedure itself was painless and they gave me a big dose of fentanyl and something else, so I was pretty out of it.

For the chemo, the nursing staff will walk you through everything. For me, realizing that this was a normal, day-to-day thing for them helped somehow.

Also, you are so right that soon this will be behind us. So glad your son is able to drive you. A birthday he will always remember, I am sure!

I had long hair for years and was surprised to find out that a pixie actually looked good on me.

Maddie, hope the port placement went well and you got a good night's sleep.

Dx 7/9/2021, LCIS/DCIS/IDC, Right, <1cm, Grade 3, 1/1 nodes, ER+/PR+, HER2+ (IHC) Surgery 8/11/2021 Lumpectomy: Right Targeted Therapy 10/31/2021 Herceptin (trastuzumab) Chemotherapy 11/1/2021 Taxol (paclitaxel) Surgery Lymph node removal: Sentinel
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Nov 15, 2021 12:42AM NNS121317 wrote:

Roo,

I'll have 12 weeks of Taxol after I finish AC...I try not to think about it, just seems like so much chemo and so many side effects when you add it all together!

I have enough hair for about three people, and I've been having it washed and styled weekly since my surgery; the sheer amount of energy it takes was more than I could handle during recovery (I was also nursing a leg injury and couldn't walk). Maybe it's just as well to have that off my plate during chemo!

I went shopping today and picked up a few things that had been recommended for chemo (new toothbrushes, Claritin, water flosser, etc.) Just getting that done helps me feel more ready for what's ahead.

I hope y'all have a great week!

Dx 8/30/2021, DCIS, Left, 5cm, Stage 0, Grade 3 Dx 8/30/2021, IDC, Left, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR-, HER2- (FISH) Surgery 10/8/2021 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy 11/19/2021 AC + T (Taxol) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Nov 15, 2021 01:46PM Maddie322 wrote:

Hi NNS and hello Roo!

- Welcome, and as Roo said, sorry it's under these circumstances. I didn't expect to need chemo either and in some respects it still feels like a dream. I have my first infusion of TC (Docetaxel/Taxotere and Cytoxan/Cyclophosphamide) on Wednesday. It will be a long day as I'm doing cold capping that will continue for two hours after the chemo infusions are over.

I had my port placed on Friday afternoon. I was really wigged out about it - guess I did to much research prior! I told the doctor and anesthesiologist that I didn't want to know anything that was happening or remember anything after it was over. And I didn't. I was tired from the anesthesia but felt no pain until the next morning. Even then, some ice and Tylenol kept the pain at bay. Day 3 and I'm just feeling some soreness at the incision site. But I know having this port will be so much better than getting infusions in my 65 year old veins! LOL

I was SO worried about this port, and I would tell anyone who needs a port and has the same fears, just do it. Make sure you tell them you want to be knocked out as much as possible. You'll deal with a little pain, then soreness and a slight tugging feeling. But it is all very manageable. I I did not think it would be from the get go! I really took it easy for the last two days. You can't lift more than 10 pounds for 7 days after port placement. But you are able to get around and do things, just at a slower and more careful pace.

Now to get over the fear of the first chemo infusion . . . :-(

Dx 8/26/2021, IDC, Right, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery Lumpectomy: Right; Lymph node removal: Sentinel
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Nov 15, 2021 08:13PM Tsohl wrote:

New here, but have been reading for a couple weeks. I noticed a shadow on the side of breast in “décolleté “ area end of August…couldn't see or feel anything else. A week later I was diagnosed with IDC and after undergoing all the testing, it was decided to begin treatment with chemo, beginning Oct 4.

I had my 4th and final AC treatment today. It thus far has been well-tolerated.

Scheduled for MRI next Tuesday and begin 12 weeks of weekly Taxol the following Monday (29th).

I hope to learn fromand share with you as we all move forward on this unexpected journey!

Dx 9/8/2021, IDC, Right, 1cm, Stage IIIB, ER+/PR+, HER2- (FISH) Chemotherapy 10/4/2021 AC + T (Taxol)
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Nov 15, 2021 09:13PM NNS121317 wrote:

Welcome Tshol, and hi Maddie!

I appreciate the guidance on the port. Did you get a choice of which side it's on? My cancer is/was on the left, so the RO indicated a preference for the port being on the right side. But...when I'm healthy (which has been my whole life until now), I compete in shooting sports (trap/skeet), and I shoot right-handed. All things being equal, I was hoping to do spring league, but maybe it's best to put the port over there. I also usually play tennis 3-5x/week, right-handed of course...wonder if they could put the port on my left side, and take it out before radiation. I think I'll ask. Isn't it crazy, some of the things we focus on during this process?

My first wig arrived in the mail today. Seeing that really made this process real for my husband, I could tell it shook him a little. By contrast, having an option handy made me ready to let my hair go! I am eager to get this show on the road.

Dx 8/30/2021, DCIS, Left, 5cm, Stage 0, Grade 3 Dx 8/30/2021, IDC, Left, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR-, HER2- (FISH) Surgery 10/8/2021 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy 11/19/2021 AC + T (Taxol) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Nov 16, 2021 05:14AM - edited Nov 22, 2021 09:22AM by J_bryant923

I am grateful for this thread! I was diagnosed with triple negative IDC, stage IIb. I had found a lump on Oct 19th, woke up with some pain and thought I just knocked my boob into a door or something. Saw obgyn for regular appt on oct 26th. Mammogram on October 27th. Biopsy November 2nd. Official diagnosis on November 4th. Port placed on November 12th, MRI today and starting chemo tomorrow, nov 16th. I will be on Keypruda, carboplatin and paclitaxel for 3 months. The doctors all wanted to do chemo first since this is a rather aggressive cancer. Then will do surgery and likely radiation.

I am ready to get started. I'm ready to do whatever I can to beat this. I'm just a little scared. Grateful for all the women on this page . The stories your strength your support makes me feel so much better about facing this. I feel so alone in my own little world but knowing I'm not the only one that feels like that is very reassuring. Thank you!

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Nov 16, 2021 06:48AM Maddie322 wrote:

Glad you found us, J_bryant. But sorry for the reason you got here.

Wow, I thought my diagnosis moved fast, yours is like a speeding bullet. I hope you are finding some time to let it all sink in.

I also hope Chemo goes well for you today. I had a friend who was diagnosed with Stage 4 lung cancer 3.5 years ago. He did Ketruda with some other drugs and it worked. He's been in remission for the last nearly 3 years and he didn't have bade side effects other than some skin issues. I hope the same for you. Keep us posted. And, know that i believe we are ALL scared.

I was petrified of the MRI with contrast, then the needle biopsy. When it came time for surgery I could hardly contain my fear. But, it came and went and I got through it. Chemo though, that was a horse of a different color. scares the crap out of me. I'm relatively healthy, take no prescription meds (other than an inhaler) so the though of pumping these toxic drugs into my body, well scares me.

Then the port placement....well that one totally wigged me out too. But it happened last Friday and I survived. And like those strong women that came before me and survived chemo, I will survive it as well. This community has helped me to not feel alone in this journey and has provided a way to navigate through it all. Sending you good energy today. You'll rock this!

Dx 8/26/2021, IDC, Right, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery Lumpectomy: Right; Lymph node removal: Sentinel
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Nov 16, 2021 07:10AM Maddie322 wrote:

Welcome Tshol - glad you found us, and as with everyone who joins in these posts, sorry for the reason you are here.

Seems you too are on this fast diagnosis and treatment train. Good luck with your 12 weeks of Taxol. Will surgery be in the picture at any point?

I found it helpful to check out prior posts from those that have gone through chemo to learn and prepare. But I also wanted to be a part of a group of women who were going through it together and could share our milestones and frustrations. Please check back in with us and let us know how you're doing. Sending you good energy.

Dx 8/26/2021, IDC, Right, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery Lumpectomy: Right; Lymph node removal: Sentinel
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Nov 16, 2021 07:18AM Maddie322 wrote:

Hi NNS,

My breast surgery was on my right and it's still healing so I asked that the port go on the left. They agreed. It's feeling much better today, hardly any soreness but still a little tugging feel to it and the steri-strips are still on....still have to baby that arm and no heavy lifting over 10 pounds for a week.

I'd be sure to ask the nurse and doc doing the surgery, their opinion about port placement. Also ask about exercise and the type that it's okay to do. I read that walking is fine, but that with a port you shouldn't really exert yourself. I have no worries in that area LOL. I am not nearly as physically active as you are!

Be sure to tell the nurse and doc what type of exercise you want to do (i.e. tennis) and get their ok to do it with a port. They are the experts.

Where did you get your wig? I'm doing cold capping but read shedding is to be expected. I ordered some head coverings/chemo hats, just in case. But it would be good to know where you got your wig, if you're satisfied with it, that is!

Yes, this sh*t does get real, and fast!

Good luck!! Let us know how you make out with the port placement.

Dx 8/26/2021, IDC, Right, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery Lumpectomy: Right; Lymph node removal: Sentinel
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Nov 16, 2021 09:31AM Rocky41102 wrote:

Hi everyone! I had my first TC session November 4. It was a little rough for a few days but not too bad. I was also having my period (extremely heavy no less!) and so I'm not sure if more of my side effects originated from that or the chemo! I was mostly just tired and dizzy. I was still able to go to my kids soccer games so that was great. I'm 12 days out today and just kind of waiting for my hair to start falling out before I cut it, while secretly hoping maybe it won't! But I haven't come across anyone that kept their hair unless they were cold capping so trying to mentally prepare.

It's such a boggling, surreal experience! I was originally going to do AC-T chemo but my oncotype score ended up low at 10 so we switched to TC instead. I'm glad I saw this thread. I've been reading more than I post but I love this community! I highly recommend people look into Wigs and Wishes if you need a wig. They offer a free wig to cancer patients and if there's not a location near you, they'll still work with you online.

Dx 8/3/2021, IDC, Right, 3cm, Stage IB, Grade 2, 3/7 nodes, ER+/PR+, HER2- (FISH) Surgery 9/27/2021 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Nov 16, 2021 10:49AM NNS121317 wrote:

The wig that arrived yesterday was from Headcovers Unlimited, and I have a few more coming from wigs.com later this week. I am no fashionista and plan on mostly wearing beanies (I live in a cold/snowy state), but have a couple significant events to attend while doing chemo, and wanted to have a couple options. All of my wigs were under $50, and three are halos (no hair on the crown, must be worn with a hat) because those seemed easier. My facility didn't offer cold capping at all because we're still in COVID crisis care, and I was fine with that. My hair takes about an hour a day to style, so the expense of trying to save it combined with the effort it would take to keep it looking good was just too much. With Thanksgiving next week, I wanted a predictable option for potential hair loss, so scheduled with my stylist early.

It's interesting that hair loss happens at different times for different people. My onco nurse is certain that I will start losing my hair about 5 days after my first treatment, and will be bald by my second infusion. She's been doing this for 40 years, so I'm inclined to believe her. I was reading that the chemo drugs are dosed based upon body surface area, and given I'm over 6 feet tall, my BSA is much higher than most women. Maybe that has something to do with the timeline she gave me.

Welcome to everyone! This is my new favorite spot in the community, it sucks we're all here but having others in the same spot gives me strength.

Dx 8/30/2021, DCIS, Left, 5cm, Stage 0, Grade 3 Dx 8/30/2021, IDC, Left, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR-, HER2- (FISH) Surgery 10/8/2021 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy 11/19/2021 AC + T (Taxol) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Nov 16, 2021 10:52AM - edited Nov 16, 2021 10:54AM by Moderators

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Nov 16, 2021 11:43AM Maddie322 wrote:

Thanks for the wig info, NNS! When I first read about cold capping it seemed so extreme. You had to purchase numerous caps and then tote them to the session in dry ice, along with someone to help you change them out every 20-30 minutes while getting the infusion. I broke down and thought, there is no way I can do that!

Then I read the flyer more closely and realized the facility where I'll receive chemo, contracts (or whatever you want to call it) with DigniCap cold capping and they have staff trained on how to place the cap during chemo. It's an investment for sure, but I rarely spend this much on myself and I figured, I'm worth it. We shall see. . . I have several caps just in case, one satin lined as well as a silk pillowcase....easier on the hair and head, I've read.

Dx 8/26/2021, IDC, Right, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery Lumpectomy: Right; Lymph node removal: Sentinel
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Nov 16, 2021 12:26PM Mallow912 wrote:

Maddie, we are very similar. I also had lumpectomy 10/4/21, clear margins, three nodes all negative. Waiting for radiation and then got onco score of 26, right on the border for chemo. Doctor wants to start chemo right away. I’m waiting for a second opinion. When asked about cold caps, she said she didn’t think they did much good. But personal reports seem to say it helps, so that’s my plan, too. So many questions, decisions. It’s overwhelming. Good luck

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Nov 17, 2021 01:03PM - edited Nov 17, 2021 01:04PM by Roo73

I've been away for a couple of days (Tuesday is chemo day), but stopping by to say good luck today, Maddie, and tomorrow/Thursday NNS!

It felt so unreal to be preparing for the first one, but it was OK during it and a relief to get it over with and know what it was like. And you get to know all the staff.

Just finished Taxol number 3. Some more serious shedding is setting in :-(

Looking forward to catching up with all the new posts this evening!

Edited to say: Used the port for the first time yesterday and it was SO much better than the hand/arm. Very glad I got it.

Dx 7/9/2021, LCIS/DCIS/IDC, Right, <1cm, Grade 3, 1/1 nodes, ER+/PR+, HER2+ (IHC) Surgery 8/11/2021 Lumpectomy: Right Targeted Therapy 10/31/2021 Herceptin (trastuzumab) Chemotherapy 11/1/2021 Taxol (paclitaxel) Surgery Lymph node removal: Sentinel
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Nov 17, 2021 01:57PM staypositive123 wrote:

Hi All,

I will have my first Infusion on 11/29 TCHP so joining the November group.

My port will be next week 11/23, I'm scared but like everyone else I will survive. Thanks for the tips.

Been reading on the Chemo thread in the previous months and I must stay it gives a good perspective. No body wants Chemo, but we do what we have to do to survive. I like the fact that people share their own experience and it doesn't sound as scary anymore. And I agree, it's more mental/emotional than physical. I also have a long hair, not sure if i'll get a pixie or just wait til after 2 weeks after my treatment to shave it. I was reading on the cold capping (paxman) eventhough I am not totally sold, so I don't think i will do it.

Dx 10/22/2021, IDC, Left, 2cm, Stage IA, Grade 3, ER+/PR+, HER2+ (FISH) Targeted Therapy 11/29/2021 Perjeta (pertuzumab) Chemotherapy 11/29/2021 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy Herceptin (trastuzumab)
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Nov 20, 2021 07:33PM NNS121317 wrote:

It's been a whirlwind of a few days! I got my port on Thursday morning, and noticed the Zofran they gave me prior left me with a headache that caused nausea all on its own. Blah. The port was fine, they left it "accessed" because chemo was less than 24 hours away.

Except....at 4PM on Thursday, the onco folks called and said no chemo on Friday because insurance hadn't approved it yet, and that with the holiday I couldn't be rescheduled until Decemebr 3. They then had a nurse walk me through removing the Hoover needle from my port over the phone.

I was beside myself, had been all pumped up to get this done, my son had come in to be my guest at the first infusion, and generally had scheduled my whole life around chemo. So, I called the insurance company and told them how I really felt about their delay in my approval. The representative was not helpful, but at least I felt better.

On Friday morning, I stalked my insurance company's member portal incessantly, and was excited when I saw the approval come through at 11AM. I immediately called the onco folks and asked to be put on the schedule. They found me a spot, and I was so relieved to be getting started on time!

The infusion itself was fine. Very nice staff and facility, lots of explanations, I was kept comfortable. The Aloxi gave me a headache, that turned into nausea about 90 minutes after, so I think we'll dial that back next time. Otherwise, aside from some tiredness and constipation (I also have IBS-C), I feel okay. Port is still a little sore, but nothing crazy.

Hope everyone is doing well!

Dx 8/30/2021, DCIS, Left, 5cm, Stage 0, Grade 3 Dx 8/30/2021, IDC, Left, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR-, HER2- (FISH) Surgery 10/8/2021 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy 11/19/2021 AC + T (Taxol) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Nov 21, 2021 05:37PM Roo73 wrote:

Hi everyone, checking in a few days later than I intended to…

Coming up on weekly Taxol 4. The shedding is pretty crazy now. I think a few more days and then I'm going to buzz it for the sake of my sanity, my drains, and my vacuum cleaner. Along with that comes telling various people what's going on, because I don't think I have the patience to do a wig consistently.

Rocky, I agree, surreal is the word. I've been having weird constellations of side effects that last for, say, a week and then go away. Or maybe are due to, say, my period (er… just that I've never had that with my period before, but who knows?). I am trying to roll with the punches. I had an allergic reaction to the Taxol last week (having successfully convinced them to cut out the steroids and antihistamines due to some pretty severe mood side effects). Then I felt guilty when I started to get itchy, and thought maybe it was just my imagination (nah, it wasn't).

NNS this thing with the insurance is outrageous. Good on you for stalking them, but… that is NOT something you should have to be dealing with at this time. It would be nice if they could organize their system as well as you do yours. Right, and that's their job, isn't it. Hmm.

Staypositive… stay positive. For me too, it helped to just read what other people had experienced. I guess they made it through whatever dreadful thing and posted again…

Maddie, how did everything go?

If you've got/are getting a port: FWIW I had two infusions through veins in my hand/arm (and I have never really minded needles or infusions, I've got nice big veins right near the surface). Last week was through the port. Wow, it was so much easier. The chemo really stung before, not a lot they could do, but last week I barely felt a thing. I could also move around a lot more easily.

The port surgery sounds icky but I only dimly remember it, and really the infusion was so much nicer with the port. In case you are hesitating.

Wishing everyone an uneventful and healing week ahead. Made up my Christmas fruitcakes today. What do you mean, you don't like fruitcake?

Dx 7/9/2021, LCIS/DCIS/IDC, Right, <1cm, Grade 3, 1/1 nodes, ER+/PR+, HER2+ (IHC) Surgery 8/11/2021 Lumpectomy: Right Targeted Therapy 10/31/2021 Herceptin (trastuzumab) Chemotherapy 11/1/2021 Taxol (paclitaxel) Surgery Lymph node removal: Sentinel
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Nov 22, 2021 09:38AM J_bryant923 wrote:

I'm going in for round 2 on Wednesday. I feel like all I did was sleep this past week, just now getting some energy and expecting to cycle back to sleepy. I thought I would ask you ladies, one side effect was just feeling like I was feeling everything, like my skin, ears, nails, hair was hyper sensitive, almost like a fuzzy static feeling. It has since went away, but it was so odd and hard to describe.

You ladies have no idea how much you have helped me just by reading your stories. I think I have read everything on this site and I don't feel so alone. Your strength gives me strength and I know if you can do it, so can I. I am still very early in my fight but I am taking notes from you warriors!

Anyone have any thoughts about TNBC and diet? I want to give myself the best possible outcome, but to find the strength to grocery shop, meal prep and eat healthy not for convenience will be hard. I am still working full time, hopefully i can keep that up, so Any tips is appreciated.

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Nov 22, 2021 09:54PM NNS121317 wrote:

J_bryant - I'm not TN, but the best thing that's helped me eat more healthy meals is Home Chef. I got it as a gift from my coworkers after surgery, and while it's not cheap, I appreciate the pre-portioned foods, easy instructions (some options are heat and eat), and variety (I've become a very picky eater as of late). There are lots of similar services, but it's been a lifesaver for us.

Yesterday was day 2 since AC round 1, and it was just awful! Nonstop nausea, got way worse in waves, no meds helped. I wasn't able to eat anything, although I did make an effort to stay hydrated. I slept about 18 hours. I also called the doctor, because they said nausea should be controlled...they prescribed a couple different meds, and those provided some relief. Eventually.

Today was better, I actually had some energy in the morning, got three small meals in, but then tried to go to Walmart and just ran out of gas. If I could've fit in the cart, I would've made my son push me. Still, anything is better than Sunday!

I also started losing my hair today...it's very crunchy, and is shedding. The shower looked like someone had given our Black Lab a bath! I already had it cut short, but a buzz might be happening sooner rather than later.

Hope everyone is hanging in there! What's everyone doing for Thanksgiving?

Dx 8/30/2021, DCIS, Left, 5cm, Stage 0, Grade 3 Dx 8/30/2021, IDC, Left, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR-, HER2- (FISH) Surgery 10/8/2021 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy 11/19/2021 AC + T (Taxol) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Nov 23, 2021 01:12AM green804 wrote:

Hi everyone,

I've been reading about everyone's experience on here. This is my second time around with breast cancer but my first time with chemo. I have my second infusion tomorrow. I'm going to assume it will go better than the first. I had an allergic reaction about 2 minutes in. Is anyone else on here cold capping?

Dx 10/14/2021, IDC, Left, Grade 2, ER+/PR+, HER2- Chemotherapy 11/2/2021 Cytoxan (cyclophosphamide), Taxotere (docetaxel)

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