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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 09:47AM - edited Nov 8, 2021 09:48AM 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 23, 2021 04:32AM - edited Nov 23, 2021 05:31AM by Moderators

Hi green804,

We're so very sorry to hear of your diagnosis, but we're really glad you've found us, welcome! We're sure you'll get lots of support here.

We would suggest you post your question also in the popular thread called Cold Caps Users Past and Present, to Save Hair. Members there have a ton of advice and experience on cold caps, which we're sure you can learn from!

Hope this helps. Keep us posted, and good luck with chemo tomorrow!

The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Nov 23, 2021 12:45PM Mmcking3 wrote:

Hi! I read quite a few threads on this site but have never posted. It REALLY helped me get thru chemo. I finished TCH last month but am still on the herceptin.
J_bryant, your comment about feeling fuzzy and hyper sensitive is exactly how I felt. It felt like I’d been beat with phonebooks or hit by a bus and had a mild concussion.

A dear friend has TNBC, and sticks to a mostly Mediterranean diet. I having TPBC do something pretty similar. But your cancer center may have a nutritionist on staff. They’re very helpful! While on treatment I just ate whatever didn’t taste like cardboard and didn’t irritate my mouth sores. Smoothies were the easiest and quickest to make! I also had edibles to keep up my appetite. They were really a life saver.

Dx 7/2020, IDC, Right, 1cm, Stage IA, Grade 3, ER+/PR+, HER2+ Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel)
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Nov 24, 2021 08:11AM Roo73 wrote:

Welcome Mmcking and Green! I think Maddie is cold capping.

RE allergic reactions, I tried to stop the steroids for my weekly Taxol as it was making me permanently agitated, but I had an anaphylactic reaction (not too serious though). They tried another faster-acting steroid and it worked. So if anyone is having insomnia or other problems, ask them.

The intensive chemo sounds really really tough, especially the nausea, that's just miserable. Is the "tingling" sensation related to neuropathy? I have tingling that sometimes branches out into pain in fingers and toes, which is nerve damage (!) from the taxol. Also super-annoying tingling on my scalp. But what you're describing sounds a bit different. I sometimes feel like that when I getting sick, can't get comfortable. I've also been having flu-like symptoms on days 3 and 4, and they are a common SE of Taxol.

Something to look forward to when those of you on ACT move to the Taxol. The consensus is it's easier. I do have to say that the weekly visits are tiring and disruptive to work, though, and you go through the SE cycle weekly.

I went through the Big Shed this week and buzzed the remaining hair off last night. I was worried I'd break down but actually now I feel SO MUCH better. Free of that constant worry. Also, I told my colleagues about my cancer just to head off rumours and questions (since it's now obvious). Also my students. You know what? No one cares. They all have their own worries. The students looked at me like "Huh? OK.” I don't know what kind of reaction I was imagining, but people have other things on their minds beyond what I look like. This made it better, too.

Thanks to all you ladies too, this is a great 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 24, 2021 09:44PM Mmcking3 wrote:

I surprisingly never had an allergic reaction and as a kid was allergic to damn near everything. Even as an adult I have super sensitive skin. Which was definitely made worse by chemo. I also ended up with crazy sensitivity on my hands and feet to hot and cold. It didn’t last for ever just a few days after treatment but it was strange. The steroids gave me flush so I looked sunburned and they also made me retain an insane (I mean 12lbs) of fluid. Went from weighing 136 the day of treatment to 148 the day after when I went in for the bone hurty juice (nuelesta) to 132 the next day for hydration.

It’ll be over before you know it. Even though it certainly doesn’t feel that way in the moments of extreme discomfort.

Dx 7/2020, IDC, Right, 1cm, Stage IA, Grade 3, ER+/PR+, HER2+ Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel)
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Nov 25, 2021 06:06AM Maddie322 wrote:

Hi Mallow,

Sorry for my late response....had my first TC infusion 11/17 and the two days following weren't too bac, but it's been downhill ever since. I had no extra energy to post here.

I tried to reason with my oncologist about my 27 Oncoscore. What she told me was if i did not do chemo, there was a 16% chance that cancer could return within the next 9 years, somewhere else in my body. If that happened it would be metastic breast cancer, Stage 4. If I did 4 rounds of TC that recurrence percent would drom to 8%. Since my cancer was aggressive (grade 3 and KI67=67%) and after a lot of thought and reviewing my family history I decided on chemo. I just it were a little easier on me.

Have you made a decision yet? I'll be curious to know where you landed in your treatment.

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 25, 2021 08:45AM Maddie322 wrote:

Hi Green,

Yes, I am cold capping. Only 8 days after first TC infusion, but so far I haven't lost anything. Could be too soon, but time will tell. I'll update my results as I go through the infustion. I'm using DigniCap. Good Luck!!

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 25, 2021 08:47AM - edited Nov 26, 2021 04:20AM by Maddie322

Happy Thanksgiving everyone,

I was going to try to respond to everyone, but I don't quite have the energy to do so yet. I did my 1st TC infusion on 11/17. It went fine and I was SO thankful I had the port. Hardly felt a thing. The next two days were tolerable. I had some nausea, indigestion (controlled by Zofran once I got the timing down) and fatigue.

Friday early morning I thought I'd been run over by a train. Everything in my body hurt, bones/muscles, like when you have the flu, but times 10! And the fatigue was becoming debilitating. I finally emailed my doctor who said I could take Tylenol and Advil, alternating every 8 hours. It helped with the pain, but this fatigue is something I never felt before. There is no "pushing through it" like I am used to doing. So day 6 after the 1st infusion and I am still quite low on energy. Thankfully I have started to sleep better at night. Hoping to gain more energy as the days pass, and probably in time for my Dec. 8th infusion 2. And wondering, is it just me that is having so much fatigue I can't do anything?

A few things I learned - I am doing cold capping. It's called DigniCap. The cancer center has the equipment to cool the cap. I needed to purchase the cap and token for the machine. If I continue (I plan to), then I just purchase the token. The cap is placed on your head 30 prior to the beginning of the chemo drugs. And in my case, stays on for and additional 2 hours after the chemo has finished. For me, that was 6.5 hours. But, only the first 20 minutes are a brain freeze. Get past that and you'll be home free. I am only 8 days past my first infusion but I haven't lost any hair yet. My fingers are crossed.

Regarding neuropathy (tingling in hands and fingers after T) I had cotton gloves and cotton socks on. Then I held a frozen bottle of water in each hand (for lack of their normal procedure) and on each foot a bag of crushed ice was placed. I also chewed on a cup of ice chips during the T infusion. It was a cold hour for sure, but worth it. I felt a tingle or two after the infustion, but that's it. So far, no neuropathy or mouth sores.

I am also using TheraBreath each day and Biotene rinse, toothpaste and gel, as well. I'm staying hydrated and the other day added an electrolyte called Cure (curehydration.com also available on Amazon). It doesn't have a ton of sodium or other ingredients and I like the Berry Pomegranate). Even though I'm drinking enough water, adding this from time to time seems to help me feel better.

Okay I'm running out of energy so will end. Good luck to everyone. I am reading all of the posts and hopefully energy will begin to return and I can chime in more frequently.

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 25, 2021 03:57PM Roo73 wrote:

Maddie, I'm so sorry to hear that the treatment is so rough on you. I have been getting flu-like symptoms days 3 and 4 but not even close to what you are describing. With extreme fatigue I don't think there is any “pushing through,” for anyone. It's not a matter of willpower. I had something like that once during an autoimmune flare-up and it felt exactly like a giant magnet pulling me downwards onto the nearest sofa. I hope you've got the support you need, and hope it continues to improve.

I initially logged on with a tip that I discovered today: do not spend half an hour arranging a beautiful head wrap over your newly bald head and go to work. You will not be able to put your mask on with the wrap in place if it's over your ears. I had to dismantle the whole thing and now am heading to another meeting wearing a lavender beanie with my nice black suit, looking like an idiot. Oh well. Hope my new hats arrive soon.

Best wishes to you all.

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 25, 2021 07:46PM Mmcking3 wrote:

happy thanksgiving!

Maddie, sorry to hear about your side effects. The fatigue is undesirable. After the steroid days the following few were tough. I think after round 2 I ended up sleeping around sixteen hours a day for a few days. Eating was even exhausting. I’m 30 and was used to being able to do almost everything and that muscle weakness and fatigue had me holding onto furniture to make it to the bathroom. Rest is really important.

Had really bad nausea the first time as well and that’s when I took the advice of the ONC nurses and got ahead of it. I just took the nausea meds every 6 hours, by the fourth I had Ativan for the break thru nausea. It really helped.

Loved the biotene rinse I added some gel to my mouth guard at night as well that helped. Even found some lozenges from ACT at Walgreens for dry mouth that were a real life saver!

Dx 7/2020, IDC, Right, 1cm, Stage IA, Grade 3, ER+/PR+, HER2+ Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel)
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Nov 29, 2021 09:07AM NNS121317 wrote:

I have my second AC infusion on Friday, and I'm already dreading it. Hopefully this time we can skip the Zofran and I'll be better off. I'm currently prescribed Compazine and Zyprexa for nausea, both of which are also used as psych meds. I don't think I love that.

I am super conflicted about my hair. I'm starting to shed, but I have soooo much hair nobody can tell but me. Its texture is awful, though, and my scalp is so sensitive I can't really stand to style or even comb/brush it. Should I just shave it? Would that feel better? I have hats and wigs ready to go, I'm just thinking anything would be better than this in-between.

I've lost six pounds since my first infusion. I'm surprised at that, despite the initial nausea I felt like I was eating normally by Thanksgiving. I do have to talk myself into three meals per day, and they're much smaller than I used to consume.

Hope everyone is having a great Monday!


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 29, 2021 10:14AM mommatoo3 wrote:

Hello All!

I am sneaking in by a day! I start my chemo tomorrow. (TC + H) Getting to this point has been a weird experience of hurry up and waiting, mild panic and reassuring calmness, and a strange awareness on different aspects of life. (Existential Crisis perhaps...) I'm anxious and nervous, but feel prepared from all of the wonderful support and suggestions I've read through this page and on this site. I wish everyone the easiest of treatments where everything goes as smooth as silk, symptoms are none existent and the procedures are a breeze. You are all so brave and inspiring and thank you for being a place I know I will be able to draw strength and determination from. Let's rock this out!

DX: IDC: 7/21; Grade 3; Triple Positive; Stage 1; Surgery: 10/7/21 Lumpectomy with (2) SNL both margins and lymphnodes negative; Treatment: TC +H 6x every 3 weeks; H continued for the remaining year; Radiation 21 treatments; Tamoxifen for 5 years
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Nov 29, 2021 02:48PM - edited Nov 29, 2021 02:48PM by OG56

Hello Everyone, I will be starting AC X4, then Taxol X4 tomorrow. I did TC in 2017 tolerated that very well so I am hoping I can tolerate this regimen! We will see. As you can see this is my 3rd BC, in my right breast area. I feel fortunate that I have not had a metastatic event, I was sweating, waiting for my PET scan results.

Well I will come back after tomorrow's session. Hope all goes well for each and everyone of you!

Linda Dx 5/30/2008, IDC, Right, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR-, HER2- Dx 9/22/2016, ILC, Right, <1cm, Stage IB, Grade 3, 0/14 nodes, ER+/PR-, HER2- (FISH) Chemotherapy 2/6/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Nov 29, 2021 03:11PM - edited Nov 29, 2021 03:16PM by OG56

This Post was deleted by OG56.
Linda Dx 5/30/2008, IDC, Right, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR-, HER2- Dx 9/22/2016, ILC, Right, <1cm, Stage IB, Grade 3, 0/14 nodes, ER+/PR-, HER2- (FISH) Chemotherapy 2/6/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel)

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