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Topic: Starting Chemo May 2020

Forum: Chemotherapy - Before, During, and After —

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

Posted on: Apr 23, 2020 06:16PM - edited Jul 2, 2020 01:31AM by Angelanotangie

Angelanotangie wrote:

Hello everyone, please feel free to join. I didn't see a post for this yet so I thought I'd start one. This is actually my very first post!

I had my surgery 3 weeks ago today. I just found out yesterday that I will start chemo on 5/15. I'm doing 1 session every two weeks, with 8 weeks of Taxol followed by 8 weeks of Adriamycin and Cytoxan. Then (most likely) radiation and 10 years of hormone therapy.

I was crushed when they told me. I had been trying to prepare myself for it since they wanted me to come in person for my appointment (most of my appointments have been on the phone since Covid). My Onco score was only 14 but due to my age, LN involvement and high grade tumor, the cancer is likely to come back.

I searched for this topic because I wanted to know how people are handling the hair loss with the Covid restrictions. At my hospital they have a Positive Image center where they would normally do haircuts/shaves, wig fitting, makeup application, bra fitting/prosthetics etc but now their services are very limited. I called to make an appointment to try on wigs and scarves and they said they aren't doing that right now. All throughout this, anytime I feel powerless over my situation, I ask “what CAN I do?". I thought that facing the hair loss head on (no pun intended) was something but now it's not an option. I guess since I won't lose my hair immediately I may still be able to do this before it happens, but I really don't know how long this (Covid) is going to last! Like many have said in other forums, I'm also sad that no one can go with me to my appointments. I went through my surgery alone (while at the hospital) and all my other appointments alone. It's been hard, to say the least.

Hope to see more of you soon. Thanks for reading.

Angela

-------------------------

MAY 2020 ROLL CALL

Username (name we can call you) - [location] - known or likely start date for chemo

  • Suz_eee (Suzy) - [California, USA] - 5/7
  • KeepingCalm (?) - [Maryland, USA] - 5/7
  • UnrealTarHeel (Judy) - [North Carolina, USA] - 5/12
  • PJAL (Paula) - [Maryland, USA] - 5/14
  • AngelanotAngie (Angela) - [California, USA] - 5/15
  • Arizonasurvivor42 (Christie) - [Arizona, USA] - 5/15
  • Roxiegirl (Sue) - [Oregon,USA ] - 5/21
  • Snowflake22 (Julie) - [Ontario, Canada] - 5/22
  • Sabbymama (Sabrina) - [Belgium, Europe] - 5/26
  • b00pster (Christine) - [California, USA] - 5/28
  • Cali_aargh (?) - [California,USA] - 5/29
  • Camama3 (Laurie) - [California,USA] - 6/3
  • Smichaels11 (Shauna) - [Pennsylvania,USA] - 7/1
Dx 2/3/2020, DCIS, Right, Stage 0, Grade 3, ER+/PR+, HER2- (IHC) Dx 2/17/2020, IDC, Right, 3cm, Stage IIA, Grade 3, 2/11 nodes Surgery 4/2/2020 Lymph node removal: Right; Mastectomy: Right Chemotherapy 5/15/2020 AC + T (Taxol) Radiation Therapy 9/15/2020 Breast Surgery Prophylactic mastectomy: Left; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy
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Apr 26, 2020 12:57PM snowflake22 wrote:

Hi Angelanotangie,

I'm glad you started the May 2020 chemo group-congrats on writing your first post! I don't have a date yet but expecting to start in a few weeks.

I do have some input on your low oncotype score and getting chemo due to the other factors. My situation is a recurrence, and I had a low oncotype score or 10, but a high grade, highly vascularized tumor. My oncology team debated whether or not I should have the chemo and decided it wasn't necessary-it wasn't in the lymph nodes and I was happy to avoid the chemo. However it has come back, I had a lumpectomy on April 15 and lymph node dissection, and they have said I'll definitely be getting chemo and radiation as well as inducing menopause seeing as the hormone therapy has not been adequate. As much as it sucks to be back here I'm glad I'm getting the chemo this time and that it didn't spread any further than it did. I feel being off work due to covid closures has been a positive time for me to allow healing and rest.

As for the hair-I had been thinking of doing cold caps to preserve the hair, but during these covid times where you can't bring a visitor to the hospital I feel it would be a burden trying to deal with all the upkeep while going through the chemo by myself.

As far as going to appointments alone, one option someone has suggested to me is bringing a loved one in virtually through facetime. I haven't tried this yet, but I have learned how important it is to have another person to take notes because of information overload and the emotional nature of it all. If this isn't an option, recording the visit could help with that. Having been through this pre-covid, and at that time having access to the local cancer support place where they offered wig/makeup lessons, meetings etc and now not having that is surreal. However they still offer virtual meditation and group support-whatever they can without getting people in a room together. I am part of a group of local young breast cancer women and they have been doing zoom chats which I'm grateful for. This led to one of them offering me a wig she no longer needs, and another who will lend me partial wigs that can be worn with a hat, and some scarves.

Julie

Julie, diagnosed age 45, chek2, recurrence Dx 2/8/2019, IDC, Both breasts, 3cm, Stage IIA, Grade 3, 0/3 nodes, ER+/PR+, HER2- (IHC) Surgery 3/5/2019 Lymph node removal: Left, Right, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 8/29/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Dx 3/4/2020, DCIS/IDC, Left, 1cm, Stage IIA, Grade 2, 1/15 nodes, ER+/PR+, HER2- Surgery 4/15/2020 Lumpectomy: Left; Lymph node removal: Left Chemotherapy 5/21/2020 AC + T (Taxol) Hormonal Therapy 9/3/2020 Femara (letrozole), Zoladex (goserelin)
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Apr 26, 2020 04:35PM suz_eee wrote:

Hi AS & Julie.

This is my first post.

I am starting chemo May 7. I am not sure how it is for others when going through this process, but the COVID pandemic is sure not helping. My hospital offers so many helpful things; Wig help, free wig, acupuncture, massage, nutritional guidance, and more. Of course all of that is not available now because of COVID. It is frustrating and scary. I have been feeling a little lost. I am thankful I found this site. These forums have given me so much guidance and tips.

I decided to bite the bullet and get the cold cap. I think you can still lose some or all of your hair even with the cold cap. But supposedly it comes back in better if you do. I have already cut my own hair once since being on lockdown. (I watched a bunch of videos) I suppose if I have to, I will figure out how to cut it very short myself. I imagine that will include buying some sort of buzz cutters.

XO
Suzy

Dx 3/20/2020, Right, <1cm, Stage IA, 0/3 nodes, ER+/PR+, HER2- Chemotherapy 5/6/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Apr 26, 2020 11:22PM KeepingCalm wrote:

Hi everyone,

So happy to find this thread! I am also starting chemo in May on the 7th; I’ll have four cycles of TC. I am similarly feeling frustrated not being able to take advantage of the supports typically available including what to do about my hair! I won’t be allowed to have anyone sit with me during infusions which especially for the first one makes it feel a little overwhelming. Is anyone else here also dealing with the stress of children at home? I’m 39yo with 3 young children at home - dealing with breast cancer on top of everything related to coronavirus feels like a bit much to say the least!


Dx 2/2020, DCIS/IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Surgery 3/23/2020 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy 5/7/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Apr 27, 2020 11:28AM - edited Apr 27, 2020 11:29AM by BostonMomOf2

Hi Ladies,

New here but have been catching up on some of your posts and it gives me some relief to know you are all in the same boat. I don't have a definitive chemo date (I actually haven't officially committed to chemo yet, since the recommendation was equivalent, but I am strongly leaning toward it). I had a single mastectomy March 30 for extensive DCIS, upgraded to invasive after surgery (18 sites of microinvasion, only invasive tumor was .2cm). Moderately ER+ (10-50%), PR-, HER2-. Grade 3. Plan would be 4 cycles ofTC.


Like all of you, I have so much resentment over going through this during the pandemic. Fear of getting sick, having my two littles at home with no childcare, not being able to have family come help, not being able to take advantage of so many resources. I also went through my mastectomy alone, but chemo alone feels much scarier.

I would definitely try the cold cap, but would want a wig as a backup. I don't even know where to start to look for one

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Apr 27, 2020 12:37PM - edited Apr 27, 2020 12:38PM by suz_eee

Hi KeepingCalm, & BostonMom. I too will be getting the 4 cycles of TC. Having littles at home 24/7 during this very difficult time has to be challenging. I have thought about how much harder that would make all this. Plus, you are probably home schooling right now on top of everything else. My 4 kids are all grown. 2 of my daughter's want to come home and take care of me while I go through this, but I have told them to stay away. That would just give me more COVID worries. They are both in very affected areas too.

I wasn't going to need chemo. But then my oncotype test came back with a score of 30. That gave me a 20% chance of reoccurrence somewhere in my body in the next 9 years. I thought to myself that if someone told me I had a 20% chance of getting on a plane and it crashing in the next 9 years. I would not fly. So, I said yes to the chemo.

Boston Mom, I ordered my wig from headcovers.com. They have a large selection and a pretty wide price range. I have a large head (no hats ever fit me) so I found this to be the only one I found that had some choices in a large size. You can also check out wigs.com, Amazon, and QVC. I wish I had the option of going somewhere and trying them on.

XO

Dx 3/20/2020, Right, <1cm, Stage IA, 0/3 nodes, ER+/PR+, HER2- Chemotherapy 5/6/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Apr 27, 2020 02:48PM Moderators wrote:

Dear BostonMomOf2,

Welcome to the BCO community. We are sorry for your diagnosis and treatment, especially during these very challenging times. We are so glad that you reached out and joined with out members to engage in supporting and informative discussions. Please let us know if we can be of help as you navigate your way around the boards. We are here to help you to stay active and connect with others.

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Apr 27, 2020 03:51PM KeepingCalm wrote:

Hi BostonMom Suz ee,

BostonMom, We have some similarities. I too was diagnosed with extensive DCIS (13cm!) on biopsy but then had a 1+ish centimeter invasive from surgery pathology. This was actually seen on ultrasound but the biopsy apparently missed it - the biopsy clip was "adjacent" to where they found it. So needless to say I can relate to the stress of the upgrade; it's almost like dealing with the first diagnosis but all over again. While I am ER/PR+ my PR was very low and my oncologist is concerned about this. She said because of that, my young age, and my extensive DCIS, she's recommending chemo and her rationale was convincing when she stepped through the stats she came up with around recurrence. My oncotype also came back in the intermediate range (17) with some question it might have been higher as I participated in a presurgery DCIS study where I took a med that apparently can lower a proliferation score that impacts oncotype. (A second opinion wasn't so convinced that that would have happened in a short amount of time though but we just can't know for sure.) Sounds like you also have kids at home - do you mind my asking how old you are?

As for wigs, I also just ordered one from headcovers.com. A lot of people on youtube model the different colors which helped. I was tempted to consider cold capping but multiple oncologists said to me they didn't think it was worth it (a lot of variation in success and some risks although small) and one, a social connection of mine, said he did not want me in the hospital for one more minute than I had to be amidst covid and apparently with cold capping you've got to sit for additional hours? So I've resigned myself to considering this all temporary and just weathering the hair loss.

Dx 2/2020, DCIS/IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Surgery 3/23/2020 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy 5/7/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Apr 27, 2020 06:01PM - edited Apr 27, 2020 06:02PM by UnrealTarHeel

Thank you for starting this thread, angelanotangie, and hello to all. I'll begin 12 weeks of weekly Taxol (+ Herceptin every 3rd week) on May 12. Just trying to keep the panic at bay as much as possible. Agree that COVID is making a difficult situation just that much more difficult. So many of the supportive things that the cancer center offers are just not possible right now. We'll all need to hold one another up as best we can. I'll be chilling my hands and feet to try to prevent neuropathy and felt like cold capping on top of that was just too much. My hair is kind of wild--very thick and very curly, and I couldn't find a suitable wig online anywhere, so ordered one of those halo half-wigs and a bunch of scarves, which I hope will get me through Zoom work calls for the next few months while we're all still at home. It's just hard.

Dx 2/28/2020, DCIS/IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2+ Surgery 3/26/2020 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 5/11/2020 Taxol (paclitaxel) Targeted Therapy 5/12/2020 Herceptin (trastuzumab) Radiation Therapy 8/24/2020
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Apr 27, 2020 07:27PM BostonMomOf2 wrote:

KeepingCalm, we are indeed very similar! I was 11cm of DCIS - and I have very small breasts so was shocked by this! Same situation as you where my hormone scores aren’t very high, so chemo is on the table. The oncotype doesn’t have super helpful data for my tumor because of its size. I actually have a second opinion request out to make the final decision for chemo versus just hormone therapy. I’m also young (34) and want to do everything to extend my life as long as possible, but am close to a gray area where the benefit from chemo is incremental and of course it comes with risks. Hoping for some clarity from the second opinion. My kiddos are 2 and 3! I would do anything to prolong my life for them.

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Apr 27, 2020 09:05PM Maddy83f wrote:

Hello everyone - I am so very sorry that you have reason to be here but I am sure many of you will find this forum to be a great resource and place to vent. Tomorrow is my last chemo...still having a hard time wrapping my brain around the fact that I am at the end of this journey that began in late Oct with a routine mammogram.

While many resources that were available pre Covid are no longer available - I want to make sure you know that your best resource, the nurses you will get to know at the infusions centers, are still there for you. Chemo nurses are truly wonderful and will be there for you every step of the way.

My chemo was 4 sessions of DD AC, every other week followed by 4 sessions of DD Taxol. I was told that cold capping would not be effective with the "A" - better known as the Red Devil. I had my head shaved at my house 12 days after my first infusion. I highly recommend Headcovers.com. I bought a lot of hats/beanies there and found it easy to return the ones that I did not want to keep. During Taxol, my oncologist recommended Glutamine - I add 15 grams (3 teaspoons) to a cold drink twice a day. I have had no signs of neuropathy - so definitely something to ask your doctors about.

The advice I was given by a friend who has gone thru chemo was to eat a lot of protein, stay hydrated and exercise and I do believe these priorities have helped me. I haven't been able to walk every day but probably averaged 5 days a week - usually 3-5 miles per walk.

I found the "unknowns" of chemo to be the hardest - first the unknown of what chemo would be like and then the whole "hair" thing...... just remember: all you have to do is show up for chemo and the nurses will be there to help you every step of the way. I did have a close friend with me for when my head was shaved - for me, taking control of when/where I would lose my hair was important to me. I am sorry that social distancing will keep your friends from being right by your side - but remember they are just a phone call/face time away.

Best of luck to everyone - and never hesitate to call your doctor with questions regarding side effects - there is a big tool box of meds that our doctors have to help us - but they can't help us unless we ask.

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Apr 27, 2020 10:19PM KeepingCalm wrote:

Thanks so much for the helpful perspective and tips Maddy and congratulations on finishing your chemo!

Unrealtarheal, glad you’re here and yes, let’s support each other!

BostonMom, I can very much relate - my kids are 8, 6, and 3 and this situation has thrown me into worrying much more than I ever did before. I not only want to be here for my kids in an open ended way but also feel like I can’t catch a break for myself! I’m working to process all of this and adjust to the idea of knowing that there’s always risk but that I’m doing as much as I can to mitigate what risk I can control. I’m also realizing now that I need to make time for myself no matter what!
My IDC was larger that your invasive components so it may be that the chemo recommendation was a bit more clear cut. That being said my oncologist said my case was not straightforward (that was not what I wanted to hear!) but I think she meant in part in terms of determining how high risk or not I might be. How was your DCIS found? My primary care felt something (prob the IDC) but the two breast surgeons I consulted with a few weeks later said I had a normal clinical breast exam - scary given the way things have turned out - this might not have been picked up for at least another year

Dx 2/2020, DCIS/IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Surgery 3/23/2020 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy 5/7/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Apr 28, 2020 02:00AM Angelanotangie wrote:

Hi everyone! I'm so glad more people joined this thread. Sounds like we all have at least a few things in common. My kids are grown, now I have a 2 yo grandson that I watch once a week (well, I was before).

I had my echocardiogram done today, I'm guessing that's why they haven't scheduled the installation of my port yet. I spoke to a friend yesterday that went through this about 10 years ago and she told me about starting to boost my immune system now. I'm going to do coconut water and Emergen-C. I had been taking glutamine before, maybe I'll start again once I start treatment. I also ordered a halo wig and some scarves on headcovers.com.

AS

Dx 2/3/2020, DCIS, Right, Stage 0, Grade 3, ER+/PR+, HER2- (IHC) Dx 2/17/2020, IDC, Right, 3cm, Stage IIA, Grade 3, 2/11 nodes Surgery 4/2/2020 Lymph node removal: Right; Mastectomy: Right Chemotherapy 5/15/2020 AC + T (Taxol) Radiation Therapy 9/15/2020 Breast Surgery Prophylactic mastectomy: Left; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy
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Apr 28, 2020 01:46PM BostonMomOf2 wrote:

KeepingCalm, I found a lump (which I only found because it was painful). It turned out not to be IDC but DCIS surrounded by scar tissue. It was the only palpable lump I had because my largest tumor was only .2cm! I’m grateful every day for that painful lump because otherwise I wouldn’t have been due to start mammograms for 6 years. It was only about 2 months ago that I found it but it feels like a lifetime ago.

My oncologist is reaching out to another hospital to get me started on a second opinion since I’m in such a gray area. Hoping for more clarity soon.

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Apr 28, 2020 03:37PM jelloelloello wrote:

Hi! Our group in the "Starting April 2020" group is pretty active, and we've all been talking about hair loss since we're all losing it right about now. Feel free to come check out and participate in our group, as well! I'll also tell the ladies there to consider coming over here to answer some of this group's questions. Wishing everyone well! -jess

Dx 2/13/2020, IDC, Right, 6cm+, Stage IIIA, Grade 3, ER+/PR+, HER2- (FISH) Immunotherapy 4/2/2020 Chemotherapy 4/2/2020 AC + T (Taxol) Radiation Therapy Surgery Lymph node removal: Underarm/Axillary; Mastectomy: Right
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Apr 28, 2020 05:20PM Sabbymama wrote:

Hello Everyone! I just finished a tele-health appointment with my oncologist, and though she has not yet received the results of the Oncotype test, she feels that chemotherapy is in order given my age (just turned 50), the size of my tumor, the number of lymph nodes involved, and the amount of cancer cells present in the nodes. She has ordered additional genetic testing to see if there are any predispositions that might affect treatment. My mother died at age 52 of heart attack, my aunt died from an asthma attack at 34, and my maternal grandmother died of brain cancer at 54, so she felt it important to learn more about my maternal family health history and how it might affect me moving forward. Once all those results are in, we will discuss what type of chemo to start and how aggressively to pursue it. I am gutted. I came to the US from Belgium over a month ago to get my surgery/treatment and I was hoping to return to my husband, kids, and dogs as soon as possible, but I doubt that will happen now for at least another 4 monthsSad. Ideally I would return there for treatment, but the country is still struggling with the pandemic. This COVID thing is really annoying! So, I am back in limbo until May 12 when the oncologist will provide the treatment plan/chemo details, but I am happy to read everyone's advice and experiences while I wait. Chemo will start mid-May. Good luck everyone. Stay strong and safe!

Dx 3/2/2020, DCIS/IDC, Left, 6cm+, Stage IIIA, Grade 2, 4/22 nodes, ER+/PR+, HER2- (FISH) Surgery 4/9/2020 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy; Reconstruction (left): Tissue expander placement Chemotherapy 5/25/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 9/13/2020 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 10/11/2020 Arimidex (anastrozole)
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Apr 28, 2020 06:40PM - edited Apr 29, 2020 08:17AM by BostonGal

Hi everyone,

I am popping over from the "Starting April 2020" chemo group to extend my greetings/best wishes and to share my plan for my hair (loss).

My "image" center was open on limited basis for a while but I have not checked recently. I suspect it is now closed.

That's no problem for me because I'm planning on hats and scarves; I do not want to fiddle with a wig at this point in my treatment. I am in lockdown at home and have the option to work from home of course as soon as my onco team says I can resume work!

When I am done with treatment and return as a physical presence at work, that will likely change, or not, and I will entertain a wig. But for now and for me, I'm totally comfortable with a nice hat, scarves...and earrings, and a great lipstick and some eyeliner when I'm feeling more like dressing up!

I will also tell you, I find that being bald actually highlights people's facial features! You can really focus on eyes, smiles, cheeks, etc. Personalities!

My very best to you!

Allie


Dx 1/2020, ILC, Right, 4cm, Stage IB, 4/4 nodes, ER+/PR+, HER2- Surgery 8/31/2020 Lymph node removal: Right Surgery Lymph node removal: Right, Sentinel; Mastectomy: Right Chemotherapy AC + T (Taxol) Radiation Therapy
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Apr 28, 2020 08:41PM UnrealTarHeel wrote:

Thank you to the April folks who are saying hey, and congratulations to you, @maddy83f! I know we are all looking forward to joining you at the end of this leg of the journey. Could you share a little more about the glutamine? Both the oncologist and the pharmacist told me that there really are no helpful supplements when it comes to neuropathy, which was kind of discouraging. Did you just buy at a vitamin or health store?

Dx 2/28/2020, DCIS/IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2+ Surgery 3/26/2020 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 5/11/2020 Taxol (paclitaxel) Targeted Therapy 5/12/2020 Herceptin (trastuzumab) Radiation Therapy 8/24/2020
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Apr 28, 2020 10:59PM Maddy83f wrote:

Unrealtarheal - I bought the Glutamine powder on amazon. I was told I could do 3 glasses of cold drink with 10 grams of glutamine a day or two glasses of cold drink with 15 grams twice a day. I initially put the glutamine in a smoothy because that just sounded good - but later just added it to a glass of ice tea twice a day. I have had absolutely no signs of neuropathy. I was told to start about 1 week before the taxol and have been told to continue taking for the next three weeks. Again - this was all suggested/recommended by my doctor at the The James Cancer Research Hospital here in Columbus, Ohio - it is associated with Ohio State.

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Apr 29, 2020 11:57AM UnrealTarHeel wrote:

@Maddy83f: Thanks very much for this. I know medicine is both science and art, but it's still astounding how we can get such different advice sometimes! I appreciate the info.

Dx 2/28/2020, DCIS/IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2+ Surgery 3/26/2020 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 5/11/2020 Taxol (paclitaxel) Targeted Therapy 5/12/2020 Herceptin (trastuzumab) Radiation Therapy 8/24/2020
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Apr 29, 2020 03:10PM KeepingCalm wrote:

Hi everyone,

Quick update - got my port this morning and headed toward TC chemo starting May 7th like you, Suzy. I’m pretty sore following but am considering this one thing crossed off the list of things I would rather not have to do!

Maddy83f, I can relate to the “just have to show up” ... that’s what I told myself when feeling scared about my mastectomy which ended up going really well with very manageable recovering. And I am telling myself that with regard to chemo although expecting chemo may be a bit more of a challenge. We’llsee!

Dx 2/2020, DCIS/IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Surgery 3/23/2020 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy 5/7/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Apr 29, 2020 03:36PM wahoomama87 wrote:

Hey guys - I'm in the April 2020 group and popping over to give you my experience/perspective on hair and also chiming in on the L-glutamine question from UnrealTarHeel.

L-glutamine - STRONGLY recommended to me by my naturopath, who consulted a cancer expert about it. Also supported by my chiropractor, and my PCP who is integrative. I have not started it yet - they recommended it for the diarrhea symptoms I experience during the first round. I ordered powder also and will take 10g 3 times a day starting on chemo day and for 3 days after, and then as needed if I have symptoms again. Good to know about the neuropathy also - although I'm also doing the cold gloves and socks during taxotere.

Hair - I opted NOT to try the cold cap. My hair was short anyway, and I don't have thick hair, so it seemed pointless. Most people I asked said it was really uncomfortable and expensive, so it didn't seem worth it for something that is hit or miss. And honestly, that side effect doesn't bother me. Mine started coming out this weekend, Day 16 after my first chemo. That's about the time frame (Day 16 - 24). Mostly, I was just getting clumps of hair when I would run my fingers through, although you could't tell just by looking. So I had my husband buzz cut me. An article I read said NOT to shave your head - it can damage the follicles that are already struggling. Since I did that, I have not noticed an appreciable shedding since. I am also not interested in a wig - I live in Atlanta and I know that would be too hot in the summer. I bought a bunch of cute caps and scarves from Hats, Scarves, and More and Headcovers.com and I had some friends who had already been there gift a few to me. Mostly around the house I don't wear anything, and my family is fine with it. Same with work - my co-workers are so supportive and I just go with the buzzed head on video meetings. If I'm out of the house I'll put on a cap, just so people don't feel like they are staring! And I'll probably do the same if we end up going back to work at some point. Hope that helps! Ask questions if you want - I'm heading to treatment #2 on Friday (I'm every 3 weeks).

Kris


Dx 3/23/2020, IDC, Right, 2cm, Stage IIB, Grade 2, 1/4 nodes, ER+/PR+, HER2+ Targeted Therapy 4/9/2020 Perjeta (pertuzumab) Chemotherapy 4/10/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 4/10/2020 Herceptin (trastuzumab) Surgery 8/23/2020 Lymph node removal: Right, Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left
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Apr 29, 2020 05:30PM snowflake22 wrote:

Hi everyone!

Congrats Maddy83f! Glad to hear a voice from the other side of this, and thanks for this valuable information! I will definitely order the L gluatamine from amazon.

Kris, as for the hair, when I first looked into it I really wanted the cold capping to work, of course walking away from this with minimal hair loss would be the bees knees! But doing everything without help and now learning from this thread that you also need to stay after with the cap on- I agree with not wanting to stay at the hospital any longer than absolutely necessary.

Sabbymamma-I had genetic councelling after my first diagnosis. My biological grandmothers/mother also passed early from other causes. I did not expect to hear this but I learned I did have a genetic mutation called chek2. This means I was born with a 40% chance of getting this! I was so surprised. I only have a son (he's 19) and no daughters so it's nice to know why I got this but for now I don't have to worry about passing it down the line. Sorry to hear how gutted you are, especially in having your family overseas. We are with you!

KeepingCalm-is the port limiting to your daily activities at all?

I lost track of where I saw in this thread about wearing iced gloves/socks on hands and feet-Is there a particular type of gloves that is helpful for this? I have heard we can lose our nails, but the ice helps. I also want to avoid neuropathy.

Julie

Julie, diagnosed age 45, chek2, recurrence Dx 2/8/2019, IDC, Both breasts, 3cm, Stage IIA, Grade 3, 0/3 nodes, ER+/PR+, HER2- (IHC) Surgery 3/5/2019 Lymph node removal: Left, Right, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 8/29/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Dx 3/4/2020, DCIS/IDC, Left, 1cm, Stage IIA, Grade 2, 1/15 nodes, ER+/PR+, HER2- Surgery 4/15/2020 Lumpectomy: Left; Lymph node removal: Left Chemotherapy 5/21/2020 AC + T (Taxol) Hormonal Therapy 9/3/2020 Femara (letrozole), Zoladex (goserelin)
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Apr 29, 2020 07:40PM Maddy83f wrote:

Keeping Calm: I have relied on the mantra "I just need to show up" for chemo - especially the night before chemo when I have been feeling really good and know that chemo will change it.....

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Apr 30, 2020 11:35AM wahoomama87 wrote:

Julie -

Someone "gifted" me with the gloves and foot covers for icing (they got them from another breast cancer friend). I use it specifically for Taxotere - since that's the chemo that causes the neuropathy and the nail issues. I put them on 15 minutes before the infusion, keep them on during, and for 15 minutes after. It's my 3rd of 4 drugs that I get during my infusion, so I don't have to stay longer, thankfully. They are called Elasto-Gel - the hand ones look like Giant oven mitts and the feet are booties. My first infusion was an hour with the Taxotere, because they slow-drip it the first time, so they actually ended up unfreezing part way through. I shoved ice packs down in them and put my feet on some others (I brought them all with me in a cooler to keep them cold) and using that through the end. Worked great - at least the first time. I found the hand mitts on Amazon: https://www.amazon.com/Elasto-Gel-Hand-Mitt-Cold-Therapy/dp/B01M5JPCYD

I just put them in the freezer and leave them there, and take them out and put them in the cooler when I'm leaving for chemo. Hope that helps!

Kris


Dx 3/23/2020, IDC, Right, 2cm, Stage IIB, Grade 2, 1/4 nodes, ER+/PR+, HER2+ Targeted Therapy 4/9/2020 Perjeta (pertuzumab) Chemotherapy 4/10/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 4/10/2020 Herceptin (trastuzumab) Surgery 8/23/2020 Lymph node removal: Right, Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left
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Apr 30, 2020 04:26PM UnrealTarHeel wrote:

I hope it's ok to post this link here, but I'm planning to a cue from this video r.e., chilling hands and feet: www.youtube.com/watch?v=wUlMrD... From what I've read, the CryoMax pads stay colder longer than some of the other items. Have been told the ice machine will be off due to Covid-19 preventative measures, but I think I can CryoMax both tops and bottoms of hands, as with feet. It really seems like this shouldn't have to be such a DIY project, but I guess that shows what a neophyte I am...

Dx 2/28/2020, DCIS/IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2+ Surgery 3/26/2020 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 5/11/2020 Taxol (paclitaxel) Targeted Therapy 5/12/2020 Herceptin (trastuzumab) Radiation Therapy 8/24/2020
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Apr 30, 2020 04:50PM - edited Apr 30, 2020 04:52PM by ducky06

Hi Angela!

Chiming in from I guess the March 2020 group! I have been doing Taxol for 10 weeks and lost my hair of course. Just had my 10th infusion this morning!

First off: I planned to get a professionally fitted wig, but my appointment was for the first day that the salons closed here in Minnesota. Ugh! Close call! It was tempting to treat myself to a consultation with a stylist. But, it ended up not happening.

The hair loss started for me around Day 21. I found it to be very gentle, but it got to be annoying to have hair everywhere and I didn't like how my thinning hair looked. I did a self buzz cut of my head (with some help for the back) which made me a little sad-- but it was so much more practical and I adjusted to it in about 2 days. I realized in about a day that I actually really like how I look bald. And this opportunity gives the freedom to embrace that alternative look. I am now just going with "bald" and not getting a wig. I am on Zoom meetings all day for work and I get a lot of compliments on my look. So, you can also see how you feel with the shaved look! I am going to look into headbands as an accessory I think. I occasionally wear a hat when I am cold, and in the sun for protection.

If you do want a wig, I found out that the American Cancer Society actually provides a free $70 coupon to anyone, to apply to one of their TLC wigs. They have quite a few wigs that are $60, so you might get one for free. [edit: I forgot to mention-- but you just go to acs.org and "Chat" with a representative and they will hook you up]

Some people mentioned cold capping -- I also thought it sounded interesting, but I learned it's expensive and also takes a lot of extra time. I imagine if your cancer center can accommodate this they would have mentioned. At the time it felt attractive to me, but I'm glad now I didn't worry about it. If I had a career where my image mattered, I might have considered it more. I have seen a couple women at my cancer center doing it, but the nurses really aren't too keen on it.

Best of luck to you! If you ever want to talk to someone who's a couple months ahead, give me a ring!

Steph

Dx 1/30/2020, DCIS/IDC, Right, Stage IIIA, Grade 2, ER+/PR+, HER2- Chemotherapy 2/28/2020 AC + T (Taxol) Immunotherapy 2/28/2020 Radiation Therapy Hormonal Therapy Surgery
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May 1, 2020 08:00AM wahoomama87 wrote:

Steph - SAME!! I'm just going with shaved (although I left about 1/4 inch). I lost a bunch this weekend and buzzed it. And then nothing until last night when a bunch more came out. However, since it's buzzed, you can't even tell. I think it's just still thinning, but we shall see. I actually like it too - and am just using caps that I ordered from a site specific for chemo patients. They are cute and I wear them out of the house, especially if I'm in the sun. A cute baseball cap works too! But I do all of my work meetings now without anything as well.

Kris (April 2020)

Dx 3/23/2020, IDC, Right, 2cm, Stage IIB, Grade 2, 1/4 nodes, ER+/PR+, HER2+ Targeted Therapy 4/9/2020 Perjeta (pertuzumab) Chemotherapy 4/10/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 4/10/2020 Herceptin (trastuzumab) Surgery 8/23/2020 Lymph node removal: Right, Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left
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May 2, 2020 11:06AM suz_eee wrote:

Hi All,

On the cold cap topic. I decided to do it. I almost changed my mind when I heard all the pain in the as$ work to it. I can not color, use product, blow dry or flat iron. Also, no hats or wigs. I will look like a crazy, frizzy, half gray witch for the Summer. The sticking point for me was that there is a very small chance that hair will not come back from taxotere. I have anxiety that I will be the one who gets that. So, I am doing it.

I really appreciate this thread and having others who are going through this along with me. @KeepingCalm I will be thinking of you on Thursday as we both sit in our chemo chairs for the first session.

Good luck this week to you all.

-Suzy



Dx 3/20/2020, Right, <1cm, Stage IA, 0/3 nodes, ER+/PR+, HER2- Chemotherapy 5/6/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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May 2, 2020 12:19PM KeepingCalm wrote:

Suzy,

Thank you! I will also be thinking of you! I decided not to do cold capping (emotionally wanted to) but practically just felt like it was one more thing to deal with alone since no one can come with me to the infusion because of Covid. I hope I don’t regret - I think like anything I’ll get used to the hairless/short hair look (and yes hope that I don’t end up with permanent hair loss). I’ll look forward to hearing how you find it!


Julie,

As for the port, not limiting my activities just still sore at the incision a few days out. I had a bit if bruising too that I think is contributing to it but not needing pain relievers at this point.

Dx 2/2020, DCIS/IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Surgery 3/23/2020 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy 5/7/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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May 2, 2020 12:27PM bazcla wrote:

Hi. Can you share more information on the cold gloves? Brand? Where to purchase? I’ve seen some reviews and most have not been positive claiming gloves stay cold for only 10-15 minutes.

Thank you !

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