Starting Chemo January 2021

Hi Jody,

Chemo date not set yet, but looking like it will be first part of February. Diagnosed October 29th. Surgery was on December 17th with single mastectomy. Two lymph nodes removed with one being positive for cancer. Nervous about chemo. How are you doing after your first round?

I start my chemo on January 15th and would like to follow your progress. Very nervous

Thank you Castigame....I will sleep as much as i can! A friend even suggested bringing ear plugs and an eye mask to chemo. I will be in the chair for at least 3.5 hours with the cap.

Mammadee and AZGirl--I am a sharer, so I will check in often. I am most nervous about the neuropathy and the mouth sores. ugh. we will see. I know it will all save my life, so for that I am grateful and grateful to have a community to share with/ learn from.

I had my first chemo infusion yesterday...Taxol, Herceptin and Perjeta. I now have more appreciation for my port, so that is good. I had lab work first, then a check in with my MO then the pre-meds and cold cap happened, then 3 infusions in a row. I was there from 8:am until 4:30pm. They gave me Zofran at the appointment. I needed it again at about 8:30pm when the steroids wore off. I also took a dose of Miralax in the afternoon and was able to drink 96 oz water yesterday and today. I feel pretty good considering....

I had to have an MRI guided Biopsy today. That was not so pleasant. ugh. I'm hoping to feel better tomorrow once the wrap around bandage can come off.

I took Zofran today at about 11am. I'm starting to tell it is wearing off. I'm not supposed to take another for at least an hour. I would like to avoid the second defense nausea meds because it just adds to more constipation. Should I take it anyway? I'll decide in the next 15 min or so after a quick walk.

Jody, how are you healing?

Hello everyone! I started chemo in November and had 4 infusions of Taxotere Cytoxan TC. I had my last Friday, January 8. I wanted to come on and tell you what I experienced and what helped me. Even though it is different for everyone even if you are on the same treatment plan.

1. I encourage you to use the prior months chemo threads that helped me a lot.

2. Go to the upper top of your screen and click on the downward arrow by the person; go to "my profile" and it will let you fill in "My Diagnoses and My Treatments" and then go to settings where you can make these public. Then at the bottom of your posts it will say your history, your diagnoses and your treatments so you won't have to repeat every time you post and others can see what you have had done and what your treatment plan looks like. You can see mine below my post.

3. I had a mammogram in December 2019, nothing; In late July I found a lump in my left breast. I had a mammogram and ultrasound the next day and they didn't find anything on ultrasound but mammogram showed a change. I had been on hormone replacement for about a year; which probably didn't help. I had to have a stereotactic biopsy, one they do with mammograms. You have to lay on your stomach and climb up on the table a few steps. Then the next morning a radiologist called me when I was at grocery to tell me I had breast cancer and my GYN should be calling me. I ended up calling a breast surgeon that afternoon and got an appointment almost immediately. My GYN didn't even call me until late the next day about 36 hours after I had received my diagnosis.

4. My appointment with breast surgeon was great. I loved her from the beginning. She leaned towards a lumpectomy and radiation but I just didn't want radiation. I was still considering my options when she sent me for a MRI on both breasts - standard The same breast left had something more than first lump so they had me have a MRI biopsy. I ended up having some DCIS and was pre-cancerous so would have to come out too and it wasn't close to my lump - so two incisions. The right breast was fine. So I decided to go with left mastectomy and so I wouldn't need radiation unless they found cancer in my lymph nodes. I decided against double mastectomy just because I wanted to see how much recovery would be needed and thought it would be easier on one side. No genetics were found even though my sister had breast cancer pre-menopause in her 40s and had lumpectomy/radiation and a full recovery - she was in her 40s and is 65 now. I am 60 and had the mastectomy on my 60th birthday post- menopause.

5. I investigated so many options. I wanted DIEP but I am obese and it wasn't recommended until I lost weight. I did find a doctor that would do it. I went to Fort Lauderdale, Tampa Moffitt, and Fort Myers. I live south of Fort Myers near Naples. I ended up going to a PS plastic surgeon in Naples for an expander and then that would give me time to decide but I was leaning towards an implant. Always can do more later, but at least the expander would preserve breast skin and give me time.

6. Mastectomy happened; clear margins, no lymph nodes affected even though they accidentally took 7; meant to take 1; BS breast surgeon says they sometimes come out in clumps. Good recovery. I had to go to oncologist and she wanted a PET SCAN and I was waiting on my Mammaprint ( like an Oncotype but just the type my BS did). PET SCAN was clear. I thought I would escape with no chemo and just expander fills and my exchange surgery. My Mammaprint came back high but not real high so they gave me a decision; 4 rounds of chemo or not. They were pushing for chemo. I decided to go ahead. I work full-time remotely and used to travel before COVID and this was November-January kind of slow months so I decided chemo. I don't regret it.

5. I had a couple bad days every session but most times it was completely bearable. Bone pain after Neulasta was the worst the first session even though I used Claritin - I started taking ibuprofen every 6-8 hours and that helped on those days. Stomach a little bit off but not nauseated - never used nausea medicine. Just bland foods. I did like sweets and sometimes fried like fried fish / chicken strips. Not the healthiest of food. I did eat a lot of homemade soups - chicken noodle mostly. I had a hard time drinking anything - nothing tasted good I did not have mouth sores. I used biotene mouthwash, toothpaste and some lozenges that really helped during the night since they melt and you didn't have to worry about choking on them. I had dry eyes and used eye drops - not visine - research or ask doctor what kind. I did get more tired as the cycles happen but I try to keep up my walking even though I got out of breath more easily. I walked more times but less distance. I did take rest breaks but working through it kept my mind occupied and I could take rest breaks throughout.

6. I cold capped with DigniCap and I guess it was successful. You can't go into it thinking none of your hair will fall out. It will for sure. Some only have some and they can manage without anything. I had about 50% on the top of my head and my forehead is the worse. It could be the forehead wasn't tight enough. I didn't start shedding until around my second session and that is when most fell out but I still had some fall out after that. I am told it comes back faster using dignicap - we will see what happens the next few months. I did use serum on my eyebrows and eyelashes and haven't lost any of them, but I heard they are the last to go so waiting a few more weeks until I know if that was successful. All my other body hair has stopped growing. I really didn't notice if falling out just not growing. That is my upper lip hair, nose hair, underarms, legs, pelvic area, etc.

Any questions please ask. There are so much good information on this site. It has helped me soooo much. Good luck and will be praying for you all.

I'm on day 4 following first dose...and with weekly Taxol I am told they build up and it is a little worse each week. I would say I have had consistent mild nausea. I have always been regular (ahem) , so the constipation part had me worried. I took miralax on days 1 and 3 but am realizing that I am just not getting constipated and don't need it yet. I am told the Perjeta can cause diarrhea, so maybe that is balancing out the Zofran.

Today I am going to take Compazine and/or Ativan if I don't make it to my next Zofran dose without nausea. I have FOUR close friends here who had breast cancer (all fine now) and they all say to just keep popping the meds to control side effects. They know me and know that I try to tough it out with ailments to avoid meds. That stops now!!

Walking helps with the nausea a lot. I plan to do that a couple of times everyday but will be kind to myself if I don't feel like it. I am lucky enough to live in San francisco---home of the Apothecarium on every block, so I have a friend who is going in today to inquire about cannabis for the nausea and maybe eventually for sleep? I am sleeping fine this week and have always been a hard sleeper. I cannot use any cannabis that will go through the liver because it is hard on the liver and my numbers there aren't great. My MO is running another full panel for the liver numbers on Thursday before my next treatment. I definitely like my cocktails and wine, but I haven't had anything to drink since diagnosis on Dec 15th....three weeks on the wagon and liver number weren't "in the green" on the 7th. She said to avoid Tylenol until the next panel as it's hard on the liver....also no supplements except Fish Oil, D and Calcium.

I'm looking forward to a gentler week having only chemo on Thursday I was basically carpet bombed the last two weeks: Contrast MRI, Port Placement, Echo, Chemo, MRI guided Biopsy and finally a silly allergy shot so I don't fall behind on my immunotherpy for trees and weeds!

OH! I'm I'm getting that water down, too. I fill three-32 OZ bottles every morning as a visual reminder of what I have left to drink. Lots of potty trips!!

Jody, glad to hear you are feeling okay. I will go pick up Collace today. The Senekot worries me. If you find Olaplex Shampoo and conditioner in your area I've heard it is great for new growth (and strengthening current hair). I am using it. It is free from all the bad stuff but still have a nice lather. They carry it at Sephora....popularity is growing, so it is harder to find on the shelves.

Marie--thanks so much for the update and very helpful post. I will go back and lurk in your Nov 2020 board. xoxo

Hi Jody!

Feeling pretty well. My port site is still really sore, but at least I am sleeping well at night. Waiting to hear back regarding if my margins are clear from the second surgery. If not, radiation will also be part of my treatment plan. Thanks for the words of support. It sounds like all of you are taking great strides in your treatments. It gives me a lot of hope and courage of what lies ahead. I love the advice of treating chemo like eating an elephant, one bite at a time. That helps put things in perspective. I hope you rock the second round as well as the first.

I feel it has been a very slow process in getting treatment. Not sure if this is because I live in such a rural place. A lot of hurry up and wait. Part of me just wants to get in it to get out of it quicker. Does anyone else have that feeling? Diagnosed late October. Surgery mid December and still waiting on my chemo dates. I worry with my high grade of cancer things and things progressing so slowly with treatment that I am not sure it won't nip everything in the bud. Just worrying...

Claire-thanks for all the information. That has been super helpful to read. I find that THC/CBN edibles have been one of the only ways I can sleep at night. I had no idea that was hard on the liver. Good to know.

Marie914-appreciate your sharing your experience as well. Lots of good info there.

Hello Claire1973 - I started the serum pretty much right away but it says to only use it once a day. I used a different kind than Dignicap people said just because I could find it better. That is a lot of appointments in one week. I had that for awhile and then it seemed to get better. I never had trouble with constipation but I used sennakot and colace after surgery and chemo since I seemed sensitive to becoming constipated. But I had to go slow since you can get diarrhea then. I only had diarrhea a few times during the 4 cycles and probably because over medicating with sennakot, etc. This fourth cycle - no diarrhea yet.

MountainCabin - My port site was sore for a week or two and after a few weeks I didn't even notice anymore.

Hi:

I start chemotherapy on January 20, 2021. I’m really scared. Don’t know what to expect. Don’t know if I can do it. I’m 70 years old and scored a 32 on Oncotype test, hence chemotherapy. I’m heathy for my age.

Hugs, Linda

Left breast 13 cm

Estrogen rector positive / Progesterone receptor positive / HERS 2 negativ

Invasive carcinoma

Surgery/lumpectomy on December 4th

4Lkammerich - I used dignicap if that is available. You don't have to change any cap during the infusions. The nurses put it on 30 minutes prior to your first infusion and depending on your chemo drugs you keep it on 90 minutes to 2 hours after the last infusion. I did lose 50% of my hair but others have had better results. I just wear a ball cap and you can't really tell.

Hi Everyone,

If you are comfortable- I know there is a way to show your treatment plan and diagnoses in your signature. I think you just put "public" after you input your plan in your profile.

4Lkammerich -I'll be thinking of you tomorrow. So you know which Chemo you are getting and the schedule? drink lots of water. The nurses are very good about helping you to the bathroom during the infusion. I am doing Dignicap, so I am there almost 4 hours. I go to the bathroom at least twice. They will refill your water for you, too.

Maddy83f - I'll be thinking of you on Thursday. That's my chemo day, too.

I'm going for #3 of 12 on Thursdays. The symptoms have been manageable for me so far. I'm told weekly Taxol builds, so we will see about next week. The fatigue definitely builds. I've done some symptom/meds/lifestyle experimenting the past week, and I have definitely have seen results. I take the Zofran FIRST thing in the morning--even before nausea. I don't end up feeling nausea until late morning/midday and immediately take Compazine. I walk in the morning. Have lunch with my teenagers who are at home zooming into school...get some house stuff done and (here's the hard part) I force myself to lay down and rest for at least 2 hours in the early afternoon. This routine has made the evenings fine. before--the evenings were harder and i just wanted to be in bed at 7pm....now i make it until about 9:30 or 10.

The first week I took pre-emptive Miralax a couple of times and ended up with diarrhea. I have not had nay bathroom issues since then...i mean...it's definitely different! but not horrible. The symptoms I HAVE had are-minor acne i can hide with a mask , my face is hot--it feels kinda like wind burn on my cheeks and chin, and my nose and lips are definitely drying up. I have little tubs of Aquaphor lip balm stashed all over the place. The nurse suggested using a q-tip and applying right inside the nose, too. I wouldn't sy it is make ing 'better' but it is not worse, yet. Finally--my tongue is weird. It is tingly--sensitive--spicy foods are really spicy--it almost like the tip of my tongue has been burned by coffee every day.

My ATL (liver enzyme) is elevated and had been crawling up each week. My oncologist says it is not worrisome at this stage, but i am going for a CT Scan of the lower abdomen tomorrow. When it was normal the number was around 15 to 17. In sept it went to 26. then the past three readings have been: 63, 78, 96. Ugh. I bought a juicer and have been drinking beet, spinach, celery juice for several days. I'm hoping the number at least stabilizes in the Thursday blood count.

Here's a final "fun fact". I was BIT BY A DOG last week. I was on a walk and a dog walker went past me with four dogs. one of the scurried around the back of the walker and bit my thigh. it could have been a small child's face! I reported it to SF Animal Care and Control. They contacted the owner and she said he is only going out with a basket muzzle now. I live in a national park, we are in shelter in place here, still, so 'my backyard' is PACKED with people right now just trying to get some outside time. I get it and support it, but the dog walkers are everywhere! It didn't want to heal at first---bled a little tiny bit for days, but i am in the clear now. It is healing nicely. I will try to load a couple of pictures. forgive me if this makes you queasy. one pic was right when it happened---i loved those joggers-- and the other is after a few days.

i hope you don't mind a long, rambling post....i kinda like reading them because it makes me feel like we are having a conversation.

Ok-Sorry for grossing you out so early on a Tuesday, Claire:

Hi Redcanoe,

Thanks!

Yes--Mark me down in the small red pimples and bloody nose column, too. Also--my tongue is numb at the tip and my mouth is really sensitive to heat both temperature and spice. I have been swishing with the salt baking soda water after every meal, so hopefully my mouth won't get worse.

I marked 25% done as of Thursday. 9 more weekly treatments.

Claire