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Anyone starting Chemotherapy in March 2023?

2

Comments

  • scrafgal
    scrafgal Member Posts: 412
    edited March 2023

    I stopped by the site, given that it's been 6 years since I started chemo in 2017. Good luck to your group. We had a March 2017 chemo group that I found very helpful.

    After my mastectomy, I had 12 weeks of Taxol followed by 4 rounds of FAC, every three weeks.

    I had an oncotype score of...hmmm...46 or so. Pretty high. But...still six years cancer-free and doing well.

    I hope that all goes well for each of you!

  • yippeekiyaymf
    yippeekiyaymf Member Posts: 25
    edited March 2023

    Hi all,

    I was just on here and saw your posts- I finished chemo about 5 weeks ago and am moving on to radiation-

    Sheilzinia- (while our cancers are somewhat different (I'm premenopausal, lower oncotype, stage 2A with sadly lymph node involvement) I had the same chemo regime as you although my injections were grastofil which I had to give myself five days in a row each infusion day 5-10. I found the tylenol and claritin worked for me to dampen it, and heat packs- sorry to hear it isn't for you- for me the cost was luckily supported ( I'm in Canada) and the impact on my blood work was noticeably super positive. Just sending you well wishes for the last two if you have two left---

    and to everyone in March and onward- You've got this! I wish I'd found this site beforehand and had a group like this for the months I was tackling it

    Onward to radiation for me- one step at a time right?!





  • jh40
    jh40 Member Posts: 140
    edited March 2023

    Hi again - for those of you who might be curious about how to ice, the way I did it was 20 minutes prior to the start of the Taxol infusion, all throughout the Taxol infusion, and for as long as I could muster after the infusion, which was usually about 10-15 minutes or so depending on how busy the nurses were on the day. The reason you want to ice before the infusion starts is to make sure they blood vessels are constricted before the chemo gets in there.

    I believe holding frozen water bottles would work ok for the nerves of the palm, but I'm not sure you'd get the same nail bed protection without ice gloves. Same would go for feet.

    My oncologist had never heard of icing before - but when he saw my nail beds after treatment was over and found that the neuropathy was not present he said he would begin recommending it to patients more.

    I did get neuropathy in my shins, which is apparently not as typical as the hands and feet, but does happen. For me it presents as a mild burning irritation when I go into a squatted position, and passes after a few squats. I'm told it will get better with time. This would be far more troublesome on the soles of my feet or hands. I believe the icing spared me that.

    As for how things went after? My last round was November 14. I had intense fatigue after that persisted for about 4 weeks. By week 8, things were much better and I was able to do normal things without getting too tired, and my GI issues (constipation/intense acid reflux) were pretty much cleared. My red blood cell counts have a lot to do with the return of energy. They'd dipped down during treatment, as did my whites, though I never needed Neulasta shots or iron transfusions. They were both near normal by the first part of January. By week 12, things were very close to normal. I had steroids for the first 2 rounds but then stopped them.

    I still have some lingering side effects but they are mild and I'm told they will clear completely with time. My hair has returned all over my head, and this happened by week 12; I've got about 2 inches all over the top and about 3 inches on the back and sides because it returned faster in those areas. I thinned a LOT but never lost all of the hair.

  • cpalacios
    cpalacios Member Posts: 6
    edited March 2023

    hi Sheilzinla, I started same treatment as you on a March 22. Diagnosed with stage 1 bc ++-. My oncotype was 27 so also had to do chemo. Doing the cooling cap. I also did not need port. I think you return to the office the next day to get a neulasta shot or similar shot that helps keep your white blood cell count from dipping. I didn’t have to return bc I was given it as a patch injection. Half day after the injection is when I started feeling terrible. All over body and bone pain, severe headache like tension ( wondering if it’s the result of using the cooling cap), diarrhea, constipation, teeth ache. Uff. Hope you’re not as miserable as I am. If anyone has tips for this headache I would appreciate it.

  • sheilzinla
    sheilzinla Member Posts: 30
    edited March 2023

    @cpalacios Hi! You are about a week behind me. Yep, I ended up getting Neulasta shot the day after my infusion. I am now Day 14 after first TC and feel like myself! Only had side effects for Days 1-10, then pretty normal after that. Now I am waiting to see how much hair I shed on my head with cold capping. Most of my hair on my ladybits started falling out last night! Wishing you well on this journey. I think the pain you are feeling is from your patch injection. I had similar situation but took Claritin and Ibuprofen, which helped a little.

  • cpalacios
    cpalacios Member Posts: 6
    edited March 2023

    Sheilzinla, thanks for responding. OK I’ll keep doing the cold cap. I was blaming it on this terrible headache. I’m glad to hear you’re doing so well. I can’t wait to start feeling better. Next infusion I’ll try taking the Claritin and iearlier on.

  • hippiemom123
    hippiemom123 Member Posts: 2
    edited March 2023

    Hello Ladies,

    I just wanted to jump in and let you know my experience. I started chemo in November with AC and now on to the taxol part of my treatment. Last wednesday I had taxol #6. Taxol has been somewhat easier than the AC part of this protocol. I am not sick and have been able to eat. My main side effects have been face flushing the day after, bone pain day 3 and 4, and a lovely rash up and down my arms. I have been icing my hands and feet but do have some tingling in my fingertips. Tiredness overwhelms me on many days but luckily since I am retired I get to rest when I need to rest. I hope everyone continues to get through this lovely protocol of chemotherapy. I know most of us thought we would never be in such a position. I always thought I would handle this with grace if I was ever in this situation, but I have to say I have spent many days in tears. Hugs to you all!!!

  • sheilzinla
    sheilzinla Member Posts: 30
    edited March 2023

    @cpalacios, Yes, try taking Claritin after your infusion, then every day for about a week (That's what my MO told me to do.) She also said I could take Advil or Tylenol for pain, but Advil/ibuprofen would be better. We really do sound like we have the same diagnosis - I am ER/PR+, Her2-, Oncotype 29. And since you are a week behind me, I can let you know what I am experiencing. Hopefully you will be feeling like yourself soon. My Neulasta pain was awful for a few days, but I soon bounced back.

    Also, drink plenty of water! I drink 3-4 32 oz. bottles of water each day for the 2 days before and week after infusions. It's really helped. Now I am doing 2-3 32 oz. of water (like one big bottle with each meal). Hydration has really helped as has walking as much as possible (10k steps per day). If I didn't get that Neulasta shot, I probably would've felt great after my 1st round! (Although I would be worried about infection/neutropenic fever, so I don't wanna take that risk. . still hoping I can get the shot again if my hospital can figure out how to bring costs down with AmgenAssist program)

  • cpalacios
    cpalacios Member Posts: 6
    edited March 2023

    @sheilzinla, I’ll definitely take your advice on drinking enough water and walking. Before starting treatment I planned to do so well but now I find it challenging. Between the initial diarrhea and then constipation, my digestion is very sensitive now so drinking more water is not appealing. Same re walking. I walk my dogs daily so that’s something and I do feel better afterwards so I need to keep that in mind. I agree the neulasta shot is what triggered my feeling so poorly. I hope your hospital can figure out how to bring those costs down. It’s crazy expensive. I’m lucky my insurance covers the patch (though I really hate how awful it makes me feel). Keep me posted on how you’re doing. I think you’re doing amazing!

  • ruby216
    ruby216 Member Posts: 22
    edited March 2023

    Hello Chemo Pals!

    I'm reporting in after my first of 12 weekly Taxol and Herceptin infusions yesterday. It was a long day - about 5 hours start to finish including labs, pre visit consult with Oncologist, and then the infusion itself. I was also asked to participate in a research study on neuropathy. They are trying to figure out why some people get neuropathy from Taxol while others don't. They said it was still okay for me to ice, so I agreed to it.

    Aside from not sleeping well last night, I feel totally normal today. I find myself analyzing every little twinge and tingle wondering if it's a side effect. So far, nothing - and I hope it stays that way, but I know that's not likely.

    I found out about a very lovely service offered by my hospital system. They offer 2 free spa services/month to all cancer patients. I signed up for a facial and a makeup consultation. They are also giving me a free wig! So nice!

    I hope everyone else is hanging in there. It's nice to have people to commiserate and compare notes with!

    Ruby

  • msphil
    msphil Member Posts: 185
    edited April 2023

    hello sweetie. I received 3 mo chemo before and after L mast got married was planning our 2nd marriages when diagnosed. L mast then 7 wks rads 5 yrs on tamoxifen. Idc stage2. 0/3 nodes. Cytoxin 5 Fu and Ariamycin. 29 yr Survivor and our 29th Wedding Anniversary. Praise God. Faith Hope Positive thoughts. My Fiance now husband family friends. Hope this Inspires you to hang on. msphil

  • sheilzinla
    sheilzinla Member Posts: 30
    edited April 2023

    Getting ready for TC #2 in the morning!! I have lost so much hair over the last few days, but still going to pursue Penguin Cold Capping. If I lose a lot more, I have decided I can get a topper!

    The good news is that I was approved for the Amgen First Step Program!! It pays for the bulk of the cost of my Neulasta shot, at least a good chunk of what my insurance didn't pay. (For Round #2, my out of pocket after insurance dropped to $600 per shot --which is a lot less than initially estimated. And this program drops the cost even more!!). It is NOT an income based program and can save you soooo much money. If you are on Neulasta, it is worth checking out!

  • bluebird555
    bluebird555 Member Posts: 23
    edited April 2023

    Hi - I started chemo March 31 2023. Dense dose AC-T every 2 weeks for 4 months. Grade 3, stage 2b, Left Breast Lumpectomy and lymph node removal - and 1/5 LN (4mm deposit in first LN ). ER +, Progesterone low or neg. , HER2 neg. 51 years old, post menopausal. Waiting on oncotype but went ahead with chemo because of grade and lymph node involvement. Bone scan clear and CT likely clear however slightly enlarged lymph node on right subclavicular that oncologist says she is not worried about but we worry so trying to keep an extra eye on it... lots of nausea after the first chemo for a couple of days

  • moderators
    moderators Posts: 7,894
    edited April 2023

    Welcome, bluebird555! We're so sorry you find yourself here, but we're glad you've found our community and hope this place can be a source of support for you.

    We also wanted to let you know that we offer weekly virtual meetups for our members, where you can connect with others who are going through the same thing. We have two In Treatment groups that you might find helpful, you can find schedule and registration info here: https://www.breastcancer.org/community/virtual-mee...

    The Mods

  • cpalacios
    cpalacios Member Posts: 6
    edited April 2023

    Sheilzinla, hope round 2 went well for you. Congrats on approval to the Amgen program! I’m scheduled for my 2nd round tomorrow. I just started losing some hair today. A few days ago, my scalp started to feel very tender and sensitive especially on the crown so I guess that was a sign. It’s not terribly bad but the amount of strands on my brush was a lot! Ugh. I’ll continue with the cold cap bc maybe it is helping some. Depending on how hair loss progresses, I’m considering cutting my hair shorter soon.

  • sheilzinla
    sheilzinla Member Posts: 30
    edited April 2023

    Hi! I hope your treatments are going well, too. Round 2 went smoothly. Same Neulasta bone pain on Days 3-6, but at least I knew what to expect. I have lost maybe 40% of my hair already, despite cold capping with Penguin. I am waiting to see if more comes out in the next couple weeks. My hairloss started a few days before Round 2 and lasted for at least a week. So much came out!

    Other than that, I am managing. Definitely feel fatigued, but I have been forcing myself to walk at least 10k steps every day and drink 80 oz of water. It's really helped!

    Good luck tomorrow! You got this!!

  • cpalacios
    cpalacios Member Posts: 6
    edited April 2023
    1. Sounds like you are doing great! Your experience sounds very similar to mine. I’m now hair loss mode. I’ve probably lost close to 30% in 2 days so I hope it slows down soon! It’s more noticeable on the crown where it’s thinning. I’m holding off on cutting my hair so I’ll just order some scarves and headbands. Stay strong and you’ll be on your 3rd round soon!! Almost there
  • azjs
    azjs Member Posts: 19
    edited April 2023

    Hi everyone,

    I began chemo one week ago (4/7) and will have four rounds of TC before surgery. It was a rough week, beginning with a hypersensitivity reaction to the Taxol infusion, followed by multiple side effects over the course of the week. I think the worst was thrush in my mouth. On day 7, I am feeling quite a bit better and looking forward to some normalcy over the next two weeks. Next treatment, I will know more what to expect, which is always good.

    I am also trying to use the Paxman cold cap. Two of my three children graduate in May (from high school and college), so my hope is to keep some of my hair for those graduation photos:) My nurse for the first infusion was amazing, walking me through the whole process.

    Although I have never met any of you, you have brought me a lot of comfort this past week. By sharing your stories, you have made me feel less alone and more hopeful. I am grateful to you.

  • sheilzinla
    sheilzinla Member Posts: 30
    edited April 2023

    @azjs Welcome! Sorry you have to join us here. I am now 10 days past my 2nd TC. Hopefully you are staying well hydrated. That should really help as you proceed with treatment.

    And from my past mistake, try to keep your scalp clean if cold capping! I couldn't get rid of feeling like my scalp was greasy/dirty during my 1st round, even though I was gentle and shampooed with baby shampoo 1x or 2x/week. I probably needed to do it more or use an ACV rinse to get it cleaner. I lost so much just before Round 2 in what most people have as their "big shed". Once I switched to using DPhue Acv rinse, my head finally felt clean! Getting all that chemo buildup off is really important. My shedding has since subsided a bit, but I am waiting to see what happens in about 7-10 more days. Wishing you well on your chemo journey!

  • azjs
    azjs Member Posts: 19
    edited April 2023

    @sheilzinla Thanks so much. My hair has felt greasy, so I will try washing three times per week and try the rinse you suggest. I miss washing my hair every day!

  • sheilzinla
    sheilzinla Member Posts: 30
    edited April 2023

    You may not need to shampoo more than 1 or 2x/week, especially if you switch to an ACV rinse. Just baby your hair like the capping companies recommend but don't let buildup grow on your scalp. I wish I followed that lesson 3 weeks ago!!

  • azjs
    azjs Member Posts: 19
    edited April 2023

    Thanks so much for the advice! I will be thrilled if I can keep it through the second cycle, but we will see.

  • rahrah2023
    rahrah2023 Member Posts: 13
    edited April 2023

    Hello

    I started Chemo 3/31. I have local reoccurrence bc same area right breast after 6years of being cancer free. Had a terrible reaction to taxol. Switch to abraxine, Carboplatin and Keytruda. Doing very well with treatments so far. Schedule for 12 treatments and 4/21 is my half way mark. Due to the reoccurrence in the same area I will have a mastectomy. I want to have a double mastectomy because I do not desire to go through this again. My doctor is advising me not to that it wouldn’t make a difference and I understand that as well. But I would rather have both removed. Any thoughts??

  • intheclub
    intheclub Member Posts: 20
    edited April 2023

    Hello I’m wishing you all the best I start taxol this week first time!

    In in New Zealand and trying desperately to find a cold cap - is there a nz group on here that I could contact im just trying to navigate the website rhaaank you

  • mandy23
    mandy23 Member Posts: 103
    edited April 2023

    Hi InTheClub!

    I'm not from New Zealand, nor am I part of the March2023 Chemo group (actually part of February 2023). However, I am cold capping and wanted to try and help out if I can.

    Using Google, I found this website...maybe they could assist?

    https://www.breastcancerfoundation.org.nz/contact

    Also, if you look at the Active Topics on the left side, I bumped up the Cold Capping Thread. You could also try posting on there and see if anyone from New Zealand responds? Though that might take a bit and it sounds like you are on a tight time schedule.

    Hope that helps.

    Best of luck to you!

  • kathleen103
    kathleen103 Member Posts: 25
    edited April 2023

    rahrah2023 - First, I understand why you are considering a prophylactic mastectomy. Everything we feel, fear, and question during BC treatment is valid. You have time during chemotherapy to make your final decision. I see you were diagnosed with Grade 3, Triple Negative (TN) BC. I was diagnosed with Stage 1B, Grade 3, TNBC on November 23, 2022. It was scary for me, and it must be harder for you since you already went through treatment 6 years ago. The chemo has to really, really work. There is no hormonal therapy for us. If it returns, will it be caught at Stage 1 again or worse? How old will you be? Will you have the strength? What will be interrupted? Keytruda is not fun.

    There's a lot of breast cancer in my family: death, recurrence, and survival. I never considered a lumpectomy. I think of myself as levelheaded but at first, I was ready to kick both of my girls to the curb. One of them had turned on me and did I really want to live with the future worry. I did a lot of research and spoke with my MO and surgeon a few times and decided that a double mastectomy wouldn't be the best option unless I had a BRCA gene mutation, and it turned out that I didn't. I had a left side mastectomy and avoided radiation treatments.

    rahrah 2023 - You have to go through your process. Please consider all the pros and cons. Put yourself first. Do what's best for you. lotusconnie1999 has offered excellent things to consider. They helped me. We're here to help you. Wishing you well.

    BTW - I'm normally in the February 2023 chemo group and the Taxotere and Cytoxan group.

  • rahrah2023
    rahrah2023 Member Posts: 13
    edited April 2023

    Thanks so much Kathleen103,

    I go back and forth with my decision and you made some valid points. I have never traveled this road before and I just don’t care for my breast right now. No one in my family has had breast cancer so I am completely on my own. The MO and surgeon gave me the same advice. I do not have the gene mutation but they cannot save my right breast. I have radiation to my right breast so it has to be removed.

    You are right, I do have time to do more research and sort things out. My last treatment will be 6/9. I am doing well with Keytruda so far,praying it stays that way. The uncertainty of the carboplatin keeps me up at night. Thank you so much for the advice. I will visit Feb threads as well to read other post and options.

    Take care

  • azjs
    azjs Member Posts: 19
    edited April 2023

    Rahrah2023,

    I'm so sorry you have to go through this again. These are hard decisions and very personal ones. I really don't have any advice, but will share my story.

    Six years ago, at 48, I was diagnosed with DCIS in my right breast. I started with a lumpectomy but the surgeon couldn't get clean margins so I had to go back for the mastectomy. Turns out I had DCIS in half my breast tissue. I had direct to implant reconstruction.

    Two months ago, I was diagnosed with IDC in my left breast. It is a separate occurrence. The breast surgeon called it "bad luck." For me, the decision to have a mastectomy on my left breast comes easily. The plastic surgeon will replace my right implant at the same time and my breasts will finally match again! For me personally, the mastectomy will bring me peace of mind. But everyone is different. I know you will make the decision that is right for you.

    I am only through one infusion of TC and it was hard. In my mind, the surgery is easier. But again everyone is different.

    I wish you all the best and send you lots of positive thoughts as you work through your decision.


  • greenshade2001
    greenshade2001 Member Posts: 2

    Hello,

    I’m late to the conversation but I started chemo March 9,2023. I’m doing six rounds of chemo with three chemo drugs and two targeted drugs plus Nulasta. I am stage 1b HER2+, estrogen + and progesterone low +. Three rounds in and the GI problems are overwhelming. But this too shall pass… and pass, and pass, and pass…. :)

    After chemo, the plan is surgery then targeted infusions and estrogen blockers till next March. The estrogen blockers will go on for years. I have the BRACA2 gene mutation, so my lifestyle has had to change. I have to avoid sun to prevent melanoma, start seriously exercising and being very strict with my eating, and doing frequent testing to watch for all the other possible cancers.
    I didn’t want this, I don’t want this, but it is reality and I want to live.
    Anyway, hello fellow travelers! Thank you for being here!

  • greenshade2001
    greenshade2001 Member Posts: 2

    Ruby216, yes, glob on the numbing cream. It really helps with the port access. I love that you named your port! Once my port healed, it stopped bothering me. Since the hospital wants to poke me with needles every time I set foot there, it has made life simpler. Watch out if you have to go to the ER, though. I had to go there for fluids early one morning and the nurse couldn’t figure out how to get the needle in. I finally stopped him and requested an IV. He was much more experienced with that. I’ll only let cancer insiders use my port now!