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Starting Chemo January 2021

JMS17202
JMS17202 Member Posts: 4

Hello!   I am starting chemo this Wednesday, December 30th.  I saw that  there isn't a group for members starting chemo in January.  I am looking for members that I will be able to talk to during this journey.  I also expect to bounce to the Nov & Dec groups to get advice from member ahead of me in the process.  I feel better when I know what to expect.

Thanks!

Jody

Diagnosis 11/11/2020, Lumpectomy 11/19/2020, Invasive Lobular Cancer, Right 1.2cm, Stage IB, Grade 2, 1 node, ER+/PR+, HER2-



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Comments

  • moderators
    moderators Posts: 7,670

    Dear JMS17202,

    Welcome to the BCO community. You are sure to find others here to talk to during this journey. Thank you for starting this topic. We wish you the very best as you get started with chemotherapy this week and look forward to seeing you here. Please let us know if there is anything we can do to assist you with navigating your way around.

    The Mods

  • 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?

  • moderators
    moderators Posts: 7,670

    Welcome, Mountain_cabin_girl79! We're so sorry you find yourself here, but we're glad you've joined our community and hope this can be a place of support.

    The Mods

  • JMS17202
    JMS17202 Member Posts: 4

    Mountain_cabin_girl79,

    So glad that you found this group. I had my first chemo last week, Wednesday, 30 Dec 20. I was very anxious...not knowing what to expect....not knowing how sick I would get. I know it is the right decision....but I was scared.

    The treatment took 3.5 hours. I had downloaded a Netflix Christmas movie. That really helped kill the time during treatment.

    I sucked on ice during treatment. I drank my 96 oz of water on both day 1 and 2. So far, no mouth issues.

    Today is day 5. This has been my best day yet. I woke up hungry and did not have any issues with the foods I ate. The last several days, I have kept to crackers, soups, eggs, toast. I haven't felt nauseated. I could just tell my stomach wasn't interested in too much food. I had some belching...but not throwing up. I have been tired. I sleep whenever I feel tired.

    I am hopeful that I am going to get through the first round with minimal GI issues.

    I have eat yogurt each day to try to prevent any yeast infections. My bottom region skin is sensitive from front to back. I have used feminine wet wipes to sooth the area. I have applied cream to the area. If this is the worse this round, I feel lucky.

    I will answer any questions that I can. I really want to be able to connect with others going through the same experience.

    Prayers.


  • claire1973
    claire1973 Member Posts: 84

    Hi Everyone,

    I will be starting chemo on Thursday (Jan 7th) and using Dignicap Cold Cap. We will see. I hope to check in with this group regularly to see how everyone is doing and also to feel less lonely in the whole ordeal. I have never used an online forum before, so I hope getting BACK here is obvious once I leave! ;)

    Claire

  • Mammadee
    Mammadee Member Posts: 3

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

  • Mammadee
    Mammadee Member Posts: 3

    I wish I could have tried the Dignicap. I would have had to drive 3 hours because it’s not offered in my area. Wish it was the standard everywhere.

  • moderators
    moderators Posts: 7,670

    Welcome, Mammadee! We completely understand feeling nervous. But we're all here for you, every step of the way!

    The Mods

  • azgirl
    azgirl Member Posts: 5

    Hi,

    I am starting chemotherapy around Jan 18th. Had my 1st appointment with my oncologist today. I’m having chemo for 6 months before surgery. I’m scared about the side effects.
    Thank you Mountain Cabin Girl for your post, it made me feel better already. So nice to have all of you to share this journey with.


  • moderators
    moderators Posts: 7,670

    AZGirl, welcome to our Breastcancer.org Community! We're so glad you've joined us and hope you find it to be a place of support and encouragement. Please let us know if there's anything at all we can do to help!

    The Mods

  • castigame
    castigame Member Posts: 336

    Sisters,

    as someone who went thru the beatings you are about to do, sleep is the best medicine. Sleeping 20 hrs a day during chemo was the main and solid contributor. Prayers for minimal SE.

  • claire1973
    claire1973 Member Posts: 84

    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.

  • azgirl
    azgirl Member Posts: 5

    Jody, I so appreciate you sharing your experience thus far. It gives me hope. Was wondering how you've been feeling since you posted last. I am praying for you. Be good to yourself and focus on whatever is good and beautiful in your life. 😊


    Claire, we share the exact same diagnosis although mine is more advanced. I know you start chemo in just a couple of days. You are in my thoughts and prayers. Stay positive and pamper yourself. You got this, girl! 👍

    Castigame, thank you for your willingness to share and help out us newbies on the block!

    Mammadee, I'm nervous too but I know we will come through this and out the other side. Love, determination and prayer can accomplish much. You can do this, you are not alone 🙂🙏

    Mountain Cabin Girl, how have you been doing since your surgery? I'll probably be having a double mastectomy after several months of chemo. Curious how the healing process is going, if you feel like sharing. Praying for a speedy recovery.






  • claire1973
    claire1973 Member Posts: 84

    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?


  • Jody,

    I am so impressed with your courage and strength. It sounds like you powered through your first round. When is your next round? How have you been feeling recently? Keep your chin up and keep doing what you are doing.

    I had a follow up surgery on January 7th to cut out more margins in my skin. I am praying that the margins are positive to avoid radiation. I also had my chemo port put in. Feeling well, but also so scared. Meeting with my oncologist on January 20th to go over chemotherapy schedule.

    So grateful to have this group of strong woman going through such challenging times. Thank you!

  • marie914
    marie914 Member Posts: 152

    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.

  • JMS17202
    JMS17202 Member Posts: 4

    All, Hello! It is great to see the increased activity on this page. Welcome All! It is great to have a few people that we can share our experiences with and learn form each other. I truly feel the sisterhood among the pink sisters.

    claire1973 - How are you feeling today? My plan for constipation was to take stool softeners each day. They are non-addictive. I have found them to be very helpful in the past depending on my diet. I didn't get constipation during this treatment.

    Mountain_cabin_girl79 - How are you feeling today? I hope the second surgery was easier for recovery. I totally understand being scared. I was terrified just thinking about chemo. The actual chemo verses my imagined chemo are two different beasts. Hearing someone say that wouldn't have helped me feel any better. Maybe you are more open to let that thought sink in than I would be.... I think we let our worries and fears of symptoms spin out of control. I wish I knew three weeks ago, that I would feel as good as I do now.

    All, Thanks for asking how I am doing. I have to say that I basically fell back to normal. Maybe more tired than normal. I take naps when I get tired. Twelve more days until my next treatment on the 20th. I really hope that my next treatment goes as well as this one has. I am treating chemo like eating an elephant....one bite at a time. I keep saying if, I do well next time....I only have two more to go. Since I have done well for the first treatment, I an not scared about going to the next treatment. Of course if my symptoms increase, that could change for treatment #3.

    This is my day 11. I had seen on posts that hair falls out day 10-13. Relooking today some say day 14. I decided to wait until my hair starts to fall out before I shave it off. That should take place by mid week. I will keep you posted.

  • claire1973
    claire1973 Member Posts: 84

    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

  • Mammadee
    Mammadee Member Posts: 3

    thank you so much for the information. I really wish the dignicap was offered in my area. Can you share what kind of serum you used? Friday is my first treatment and the waiting is excruciating. I seem to be questioning every decision I have made during this journey. If I could turn back time! You all are so brave and helpful.

  • 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.

  • claire1973
    claire1973 Member Posts: 84

    Marie-Did you start the eyebrow serum with the first chemo treatment? then use it twice a day everyday?

    Mammadee-I have this serum that is from a company that the dignicap people recommended:

    https://chemohairandskin.com/collections/hair-loss...

    I need to start using it.

    Mt Cabin Girl--i might have misspoken saying it's BAD for liver...it is just not good for it to go through MY liver right now because one of my numbers is elevated. xoxo

  • marie914
    marie914 Member Posts: 152

    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.

  • singingwendy
    singingwendy Member Posts: 10

    Hi all! Sorry we’re all here, but glad to find others on a similar journey!

    I’m starting my first chemo treatment tomorrow, and am anxious to see the results. I must admit, that all the uncertainty...how will I feel, what side effects will I have, will it be the same every time?....are driving me crazy! I’m discovering I’m much more of a planner than I claim to be. Trying to make decisions about work...I’m a teacher..is driving me crazy! 😉


    I did have my blood work done on Monday for the first time through my port, and wow! What a relief! I’ve also discovered I’m a “hard stick”—it took 5 sticks, 3 people, and an ultrasound machine to finally get the IV in my arm for the cat scan—so the port has been a blessing!

    Wendy

  • 4Lkammerich
    4Lkammerich Member Posts: 2

    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
    4Lkammerich Member Posts: 2

    I checked into the cooling cap but I can’t deal with changing the cap every 20 minutes. Starting 45 minutes before infusion and during infusion then four hours after. Is there another way. I don’t want to loose my hair.


    thanks

  • marie914
    marie914 Member Posts: 152

    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.

  • Maddy83f
    Maddy83f Member Posts: 78

    4Lkammerich: I was in your shoes a year ago. Double mastectomy on Dec 2 and start chemo on jan 21. I was also er+ pr+ . I had 4 rounds of double dose AC and 4 rounds double dose T. You can do this - just one day at a time. I was told that with my chemo (AC) that I would most definitely lost my hair - I shaved my head on the 14th day after my first chemo - I had a close friend with me - just felt that I had to control something. I purchased a wig but with the whole lock down 'thing' I only went out in public for walks so I just wore hats when needed. I will never forget how awesome it felt when I felt breeze blow thru my new hair growth in june! I focused on three things during chemo - drinking lot of water, walking every day (3-5 miles) and eating protein. This is what a close friend had advised, having gone thru same treatment 8 years prior. The year will go by - it may not go by fast - but you will find yourself where I am. Stay strong and take care of your body as if it belongs to someone you love.

  • claire1973
    claire1973 Member Posts: 84

    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--Sad 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. Heart

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

    image


    image

  • redcanoe
    redcanoe Member Posts: 72

    Claire- I'm so sorry! That looks so painful, must have been awful!


    I am just joining this thread now but I started chemo on January 12. I was super tired on days 2, 3 and 4 and then started to regain energy on day 5. I feel relatively normal now. My nose is crazy dry and bloody and my skin is breaking out but otherwise, not doing too bad at all. I am counting down to my next infusion, want to start checking them off. I realized that after my next infusion, I am going to already be 1/3 done!

  • claire1973
    claire1973 Member Posts: 84

    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