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Starting Chemo October 2020

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We didn't see a thread yet for October 2020, so decided to start one! Please join us here to introduce yourself and share your chemo regimen. We look forward to supporting you all as you navigate your chemo treatment this month!

--The Mods

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  • idkwhatsnext
    idkwhatsnext Member Posts: 12
    edited October 2020
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    I am starting chemo on Friday and I keep getting my requests denied by KaiserSoCal:

    1. I learned from the UCLA"s Center for Integrative Oncology how helpful IV hydration can be for people going through chemo but my MO will only order me IV hydration for during chemo even though the recommendation is to have it before, during and after chemo treatments.

    2. I requested that I be given Udenyca, a biosimilar for Neulasta, instead of Zarxio (sim to Nupogen also given in place of Neulasta, because my 2nd opinion specialist from City of Hope told me that he does not recommend Zarxio and prefers Udenyca. (Update: They didn't agree to Udenyca but they did finally agree to another Neulasta long-acting biosimilar.)

    3. My dietitian recommended several blood tests for me but my MO denied the test for the various B vitamins because they said that it is not related to chemotherapy. I told them that I wanted my vitamin B levels checked because they discovered that my vit D and iron levels are low and I provided them with the following info that I had found:

    In 'Chemotherapy-Induced Peripheral Neuropathy' by Dr Tzatha (Associate Professor of Neurology), she mentions under preventing CIPN to "optimize/correct co-existing risk factors for neuropathy prior to initiating neurotoxic chemotherapy (HbA1C, B12/B1 deficiency, B6 intoxication, thyroid abnormalities)." (Excerpt below)

    Importance of CIPN

    For some patients, the side effects and deficits caused by CIPN are so severe that they impair daily function and diminish quality of lifeCIPN can result in chemotherapy dose reductions or early treatment discontinuation, compromising effective cancer treatment and patient survivalProfession-specific disability: especially important for patients who are engaged in professions or activities requiring intact sensory and motor functions, as well as fine control of the hands (e.g., dentist, pianist/professional musician, carpenter, jewelry maker) or feet (e.g., professional driver)

    Prevalence

    In a recent meta-analysis of 31 studies of CIPN involving a total of 4,179 patients, the aggregate prevalence of CIPN was 48 percentWithin the first month after the patients completed chemotherapy, 68 percent had CIPN; the prevalence decreased to 30 percent after 6 months

    Seretny M, Currie GL, Sena ES, et al Incidence, prevalence, and predictors of chemotherapy-induced peripheral neuropathy: a systematic review and meta-analysis Pain 2014;155:2461-70

    Prevalence assessments of CIPN must take into account:

    • chemotherapy regimen administered
    • duration of patient exposure to the neurotoxic agent(s)
    • evaluation methods used

    Preventing CIPN

    No high-quality studies demonstrate effective prevention of CIPN using any agentThe latest guidelines from the American Society of Clinical Oncology (ASCO) acknowledge this limitation and recommend against offering any CIPN-preventive drug to patients undergoing neurotoxic cancer treatment

    Optimize/correct co-existing risk factors for neuropathy prior to initiating neurotoxic chemotherapy (HbA1C, B12/B1 deficiency, B6 intoxication, thyroid abnormalities)

    Cryotherapy is showing promising results for preventing CIPN from paclitaxel

    Educate patients against unnecessary use of vitamin supplements (especially B6)

    4. I provided them with this info regarding the MUGA tests for detecting early cardiotoxicity and they said that they only do MUGA's (COH specialist said that their cardiologists do not allow them to use MUGA tests and they always use echocardiographs):

    "Cardiac monitoring in HER2-positive patients on trastuzumab treatment: A review and implications for clinical practice"

    https://www.thebreastonline.com/arti...jbs_etoc_email

    Highlights
    • Current MUGA is not sensitive and reliable enough to detect cardiotoxicity early.
    • 3DE (with STE) is most suitable for cardiac monitoring of patients on trastuzumab.
    •The optimal frequency and duration of cardiac monitoring is not yet established.
    • MPO and hs-troponin are promising biomarkers to detect cardiotoxicity.

    Abstract
    Trastuzumab prolongs progression-free and overall survival in patients with human epidermal growth factor receptor 2 (HER2) positive breast cancer. However, trastuzumab treatment is hampered by cardiotoxicity, defined as a left ventricular ejection fraction (LVEF) decline with a reported incidence ranging from 3 to 27% depending on variable factors. Early identification of patients at increased risk of trastuzumab-induced myocardial damage is of great importance to prevent deterioration to irreversible cardiotoxicity. Although current cardiac monitoring with multi gated acquisition (MUGA) scanning and/or conventional 2D-echocardiography (2DE) have a high availability, their reproducibility are modest, and more sensitive and reliable techniques are needed such as 3D-echocardiography (3DE) and speckle tracking echocardiography (STE). But which other diagnostic imaging modalities are available for patients before and during trastuzumab treatment? In addition, what is the optimal frequency and duration of cardiac monitoring? At last, which biomarker monitoring strategies are currently available for the identification of cardiotoxicity in patients treated with trastuzumab?

    I plan to switch to a PPO in Nov during open enrollment but will have to live with Kaiser till Jan when the new plan begins. It is just too frustrating fighting for everything. :(

  • Warrior1975
    Warrior1975 Member Posts: 3
    edited October 2020
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    Hi. I am new to the community. I just started chemo this past Monday the 5th after being diagnosed on September 8th. I am ER/PR+ and HER2+, Stage IIA, grade 3. I am on the TCHP neoadjuvant protocol for 6 cycles. So far I am pretty wiped out even being on steroids (today was my last dose for this cycle). It’s hard because I am a go, go, go person with all of the “stuff,” busy job, super busy family, etc. I am trying hard to listen to my body and rest. The post-infusion Neulasta really hit me yesterday and is still hanging in there today too. I am looking forward to learning from everyone and giving and receiving support.

  • moderators
    moderators Posts: 8,052
    edited October 2020
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    Hi Warrior1975, and welcome to Breastcancer.org,

    We're so very sorry you find yourself here, but we're really glad you've found us. You're sure to find this Community a wonderful source of information, advice, encouragement, and support -- we're all here for you!

    We know it's tough getting used to your chemo regimen, but do as you say, and listen to your body. You'll need to nurture yourself as you heal, so please rest, get lots of fluids, and take it easy overall. Try to remember that treatment will be in your rearview mirror sooner than later and you can get back to the "norm"! In the meantime, we're all here to lift you up on your journey.

    Come back often, ask lots of questions. We look forward to seeing you around the boards!

    --The Mods

  • Eucalyptia
    Eucalyptia Member Posts: 17
    edited October 2020
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    Hi- New to the group and set to start chemo end of October. I am not yet sure about my specific cocktail as my full pathology is not confirmed.

    I had DMX with TE on 9/22- Triple positive but with clear lymph nodes. Very nervous/concerned by chemo and its affects. As Warrior above, I am used to be the one "doing". Always on the move/ work, family etc.

    I was told there'd be 12 weeks of treatment, most likely Taxol and Herceptin and one other drug (that I cannot recall). Is that TCHP? Are they often given as all together? I was also told I will need a port. I am still sore from the drain tubes and I cannot imagine another surgery/ scar with pain.

  • Warrior1975
    Warrior1975 Member Posts: 3
    edited October 2020
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    Hi Eucalyptia. My TCHP is Doxetaxel (Taxotere), Carboplatin, Herceptin, and Perjeta. I got them all together. My treatment the other day was about 7 hours because 2 or 3 of them had longer loading doses for the first session. I am doing 6 rounds of that (once every three weeks) and then I will be doing some sort of surgery. My doctor just got my genetic testing results today I think and I am waiting to hear what those say which will guide what I do surgically in some capacity, I'd think. I got my port put in last Thursday and by Monday they were using it for my first chemo. I was very worried about that because the port and arm and shoulder etc. were still really sore on Monday and because the incision was still so new I couldn't have any lidocaine cream before that first access. However, for whatever reason, the stick wasn't bad at all. Small blessings. I will say that the port is annoying as it heals. The incision is pulling and itchy and generally annoying and I still can't lay on my left side normally. It's just sore deep in there still. But it will eventually get better I am sure.

    I will say, check and see if you will be getting a Neulasta pod for later auto-injection after your treatments. That was something I underestimated. I haven't had any nausea but even with Advil, Tylenol, and Claritin, the bone pain and just general all-over body pain wasn't really touched by any of that. Last night my teeth were throbbing. The steroids have also been challenging as have the lower gastrointestinal problems if you get my drift. But today the pain has started to lessen, making living in the bathroom more bearable LOL. This whole first cycle is going to be a process for sure.

  • marie914
    marie914 Member Posts: 152
    edited October 2020
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    Hello - I have a question about chemo and also about my mammaprint results. Not sure what forum will be the best.

    I have ER/PR+ HER2- IDC grade 2 after surgery they the tumor was 2.3 and they took 8 nodes (they meant to take 1 sentinel node but she said 8 came out) and they were all negative for cancer. The BS sent my tumor for a Mammaprint. I kind of wanted an oncotype since it gives you a number and not just high risk/low risk but she had already sent it. I came back high risk. I had BRAC testing and I was negative for that.

    She wants to do chemo - taxotere cytoxan for 4 cycles once every 3 weeks. How do they know which cocktail to pick? Since I saw some women on here with TCHP i(Doxetaxel (Taxotere), Carboplatin, Herceptin, and Perjeta).

    I am afraid of the taxotere since I heard the horror stories of permanent hair loss in 3 to 15% of the women that take it . 15% seems high. My chance of cancer re-occuring was only 30% and they said I NEED chemo and AIs but they aren't worried about 15% permanent hair loss. MY husband says not to worry about it; he just wants me alive but I just think I need to be better educated and if another chemo drug works just as well why can't I take it instead??

    I am getting a PET scan next week and if it doesn't show anything - do I really need chemo - 8 of my lymph nodes were negative.

  • idkwhatsnext
    idkwhatsnext Member Posts: 12
    edited October 2020
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    I had my first chemo treatment yesterday without a port or picc and it went surprisingly well. I have been torn about my decision to not use a port or picc. I don't like the idea of another surgery for the port, though minor, and the picc has a higher incidence of blood clots. I spoke to a handful of women who loved their ports and the CoH specialist that I saw highly recommended it, but I also spoke to a couple of women who never needed a port or picc, one of whom didn't like needles like me, and she said that she was able to tolerate all 6 treatments successfully.

    Kaiser gave them as PHTC and I iced my hands and feet for the last two, It took 7.5 hours and they gave me 4 zofran just before the T. I wasn't nauseous but I did develop a mild stomach ache, so they gave me some saltine crackers and they helped immediately.

    Unfortunately, Kaiser screwed up again--after my MO agreed to give me Fulphila, a Neulasta biosimilar, and prescribed it to be given today (Sat), the IV center, the only place they give the shots on the weekend, said that they couldn't give me the shot because they didn't have anyone on staff that had training or experience with the med. So, I have to wait till Monday when the Chemo department opens again to get the shot and hope that they can get trained in the next three weeks, so that it doesn't happen again. I asked if I could just take it at another Kaiser facility near me and they said that they couldn't get me an appointment for a Saturday only one day ahead. I can't figure out why they waited till the last minute, 3 pm Fri, to order the med when the MO had approved it a couple of days ago. If they had, I might have been able to go to the other facility today.

  • rbbaker1
    rbbaker1 Member Posts: 5
    edited October 2020
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    I'm starting Chemo on the 13th. Very nervous about side effects and this 4 month journey. Surgery and radiation will follow chemo. As I added my dates to the calendar, I realized this will be an almost 2 year journey before all procedures, tests, etc. are complete. Of course I will continue on with hormone blockers for 5 to 10 years. My husband and I were fortunate to retire early, but this is not how we imagined our first year would go, however, I cannot imagine going through this while working the job I retired from. Those of you working and with children I have nothing but the upmost respect! I'm thankful for this group to rely on while navigating through this journey. I'm looking forward with staying connected.

  • WC3
    WC3 Member Posts: 658
    edited October 2020
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    Warrior1975:

    I waited out the Neulasta bone aches in bed. I think it's really important to rest when you need to during chemotherapy.

  • rbbaker1
    rbbaker1 Member Posts: 5
    edited October 2020
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    I am having issues with my insurance approving neulesta. It appears it was not ordered by my doctor's office prior to chemo. My chemo nurse noticed it was missing and asked. I was told by my doctor that it was not approved and that I would have to have shots for 5 days. I live an hour away, so this will be a nightmare if I don't feel well. I called my insurance and they said it wasn't ordered. Now it's been ordered, but because my blood cell count taken before chemo wasn't down, the insurance says I don't need it. Now I'm worried that by my next infusion my count will be too low for the infusion and delay my treatment. What a mess! Sorry for the rant. Just frustrated...

  • idkwhatsnext
    idkwhatsnext Member Posts: 12
    edited October 2020
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    Hi rbbaker1. I was able to get Kaiser to give me the Neulasta biosimilar, Fulphila. My 2nd opinion specialist told me that most insurance companies don't want to pay for Neulasta but are sometimes willing to give you the biosimilars. I specifically made my request for a biosimilar and they ended up granting me another biosimilar than the one I had requested. I only cared that I got a version of the long-lasting shot. Hopefully, they won't give you as much trouble next time.

  • abbyrhodes3
    abbyrhodes3 Member Posts: 30
    edited October 2020
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    @marie914 - are you able to get a second opinion on chemo, specifically? I don't know a lot about how all of that works - and I'm certainly no expert on oncology - but if there is a way I think I would want one myself.

    I'm HER2+ so adjuvant chemo is the protocol. Makes it easier on me- no decision, unless I want to totally buck the trend and I don't.

  • abbyrhodes3
    abbyrhodes3 Member Posts: 30
    edited October 2020
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    Hi, all - I am scheduled to have Chemo #2 of 6 on 10/22. I'm not sure if I'll post a lot, but glad to pop in and share any feedback, especially as the month goes on and others join us with questions.

    I haven't decided re: port or no port yet. A friend said hers was a godsend, but I'm not sold. Session one with IVs was manageable, and also my facility forgot to order mine in a timely manner so I may not have it available for round two. They've been meticulous about all else, so I'll forgive 'em. Maybe a port isn't meant to be, for me.

    I'm on TCHP, but we are dropping the Perjeta since it did horrible things to my digestive system. I have lower GI issues already, and if I'm honest with myself I've probably had IBS for a decade. Perjeta doesn't confer enough added benefit to merit the misery it causes my particular body. If it doesn't bother your gastric system and gives you 2% increased odds of a better outcome then that might be something you deem very worthwhile. Not for me.

    Other than the Perjeta pain, cramping, voluminous diarrhea, and bleeding hemorrhoids, round one was manageable for me. I would say be sure to drink LOTS of water before, during, and for many days after chemo. I was dry as a bone and did end up getting IV fluids - I hope to avoid that next time, as it took up a big chunk of an afternoon and for whatever reason it left me feeling less than wonderful the rest of the night. By the next day, I was fine.

    The steroids had me a little wonky - for one thing, I couldn't swallow easily w/o water at hand for a few days. That wore off. I had a touch of peripheral neuropathy from the carboplatin, apparently, but that also went away after a few days. I had a Neulasta shot, as my self-inject device failed on me (they say it happens a lot). I had almost no pain from the Neulasta - only a little thigh and shin aching during two overnight hours. It was entirely manageable with Tylenol, for me. I am taking Claritin, so I don't know if that perhaps helped with the Neulasta. I'll keep taking Claritin the whole chemo course just in case it did cut any Neulasta pain- no reason not to.

    I would say that days 1-3 were good, 4-10 were rough (mostly Perjeta) and the last five days have been good except my gut has still not entirely settled down. I slept like a log for many days after round one and I'm generally a restless sleeper. That's one positive side effect for me, better sleep.

    My hair fell out much, much faster than anticipated. The docs thought it would be after round two - instead it abandoned ship today. I washed my very long hair and gobs of it came out. My sink was full by the time I dried my hair. Tonight, my sister and my niece came by and did the honors for me. I now have the same very short haircut I had twenty years ago. Felt so good to have it over with - once it starts to go, you will want it gone, believe me. I've found a wig I like (cheapie- 138$ online), and a few hats. I live in a cold climate, so we will be wearing hats for many months ahead, anyway.

    That's all I can think of, for now. It's enough. All of this is more than enough, but hang tough and let's look forward to being through this phase!

  • PamperedMama
    PamperedMama Member Posts: 1
    edited October 2020
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    Hi all! I had my first chemo infusion on October 6th. I am receiving AC-T chemo over 20 weeks. I am currently doing four rounds of AC. They occur every other week, so this week I have been "off." I was diagnosed mid-July 2020, had a DMX on September 3rd, and an additional lymph node removed and port placed on September 29th. My cancer is ER/PR+ and Her2-. I also tested positive for the BRCA2 gene mutation, which came as a shock because there is no family history of breast cancer on either side. As if being diagnosed with breast cancer at the age of 39 wasn't a shock enough.

    My first infusion was not nearly as awful as I thought it might be. I had a giant wave of nausea hit me around 5pm on the day of my infusion, but after a solid night's sleep I woke up feeling much better. Since then, I have felt a little tired in the afternoons, but not to the extent that it keeps me from caring for my kiddos or doing simple tasks around the house. I anticipate that fatigue getting a little more intense as I move through these four rounds of AC, which I have heard is called the "red devil."

    Yesterday, I had my hair cut into a cute pixie style. I have always had short hair, so this was a nice transition haircut before my hair starts to come out and I have it buzzed. I have a wig and some hats, so I feel prepared for this inevitable side effect. I am thankful for this thread and look forward to joining with you all as we battle this horrible disease.

  • Warrior1975
    Warrior1975 Member Posts: 3
    edited October 2020
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    AbbyRhodes3 your experience sounds almost exactly like what I am going through right now and am wondering how you pinpointed Perjeta as what was causing your GI issues. My first TCHP was October 5th and since the 8th I have had such bad lower GI stuff, I am going 10-15 times a day. They have tried me progressively on Imodium, Atropine, Tincture of Opium, and now have me throwing all three at it to see if that helps. If I did not have this GI stuff, I would have been in pretty good shape by this past Tuesday, as the only significant remaining other issue (not counting residual tongue numbness and some sleep issues and sleepy fingers/feet) was headache. I too had to go in for IV fluids because of the dehydration. I am praying that by throwing everything at it, it starts getting better tomorrow. What did you do to get it to start getting better by day 10? Did they prescribe anything to you? My doctor has not thrown out there maybe not doing Perjeta for my next cycle on October 26th but I may raise that with him. The only other thing I can think of is maybe taking myself off of a medication I take for insulin resistance. It's a metformin hybrid called Xigduo and even before I started chemo sometimes I would have a little bit of GI stuff with it (not uncommon with metformin) but certainly not often and NOTHING like the misery I am going through now. If it would help this though I would have no problem going off of it as long as it doesn't throw my blood sugar/insulin resistance into a tizzy and I'd even be willing to adjust through that as necessary if it meant I wouldn't have the current situation.

  • abbyrhodes3
    abbyrhodes3 Member Posts: 30
    edited October 2020
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    First off, TMI warning for those who may not want to read further about gastric issues!

    @warrior1975, I had read through the forums here from prior months, and learned that many find Perjeta intolerable. I asked my team about it in advance, and advised that I already was prone to diarrhea and was concerned but we forged ahead anyway. I wish we hadn't- but I'm glad they immediately agreed to drop it for the rest of my treatment. I'm honestly not sure how the drug is allowed, except that for people w/o gut issues perhaps it's not a problem. For me it led to almost continuous, painful bowel movements for days.

    They prescribed me Diphenoxylate, brand name Lomotil is similar. Controlled substance, so they didn't want to unless necessary. I've tapered off both it and the Imodium by now, day 17, but I can't say my gut is back to normal yet. It's just not as bad as it was. It's caused a side complication of bleeding hemorrhoids that I'm fighting to get under control and that's my current biggest problem.

    Another thing I learned: cramping I associated with lower GI (and blamed on Perjeta) was NOT part of the same issue, but was how my body registered nausea. I wasn't taking my compazine at all- and should have been for days. As soon as I figured out the cramping was upper GI/nausea and took compazine, that particular painful symptom went away.

    I do want to ask my team more about Perjeta. I used an online calculator that suggested it only confers a couple of percentage points of greater potential for longevity and lack of recurrence, and my nurse coordinator confirmed that. Why would something so volatile be given for such tiny benefit? I can be cynical at times- and it made me feel like a lot of us might be data points and they're willing to take a chance we'll suffer if they get more good information about drug efficacy (or tolerance/intolerance) out of our experience. I know...that's awful of me. But they've been understanding about my questions and concerns so far, so I will broach it just about that bluntly. :) What's so great about a drug with such a literally gut wrenching impact on some?

    I'm hopeful w/o that one med, the next course might be much easier. I can deal with tired and dehydrated and feeling a little wonky for half a dozen days.

  • marie914
    marie914 Member Posts: 152
    edited October 2020
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    Hello - I'm not starting chemo until the first week of November and will be starting a November thread but I thought I would join in here to learn from some veterans.

    I live in Southwest Florida and am 60 years old and my husband of 15 years. I have 4 grown sons from my first marriage and they live all over the place (Texas, Miami Beach, and two in Indiana). I am 5 weeks post left mastectomy and expander tomorrow. I am going to have a port put in tomorrow. I will start chemo the week of November 2 - we think. I see the oncologist for my plan on Thursday 10/22. I will be working through my chemo as much as I can. I work from home mostly on my laptop and phone. This time of year November-January is pretty slow and more planning for 2021 so I should be good.

    I saw the oncologist and my mammaprint came back high risk so she wants me to have 4 cycles of chemo TC taxotere and cytoxan. I saw the breast surgeon last week and I am healing great! She gave me a copy of the mammoprint and explained it. I am right on the border of high and low risk but a little bit more on the high risk side. Also if you just look at my tumor 2.3 cm, no lymph nodes, HER2- but ER/PR +, I'm still right on the border of needing chemo. Also the tumor marker in my blood is a little elevated. 44 and the range is up to 38. The PET scan came back good - no signs of the cancer spreading which doesn't mean any micro cancer particles are floating around - hence the preventive chemo.

    The BS said it was up to me what I decided. I am kind of preventive and I did all this with left mastectomy and expander I thought I might as well get the preventive chemo. So here I go. I am having the port put in tomorrow even though I don't start chemo for a few weeks since 10/24 we are going to the Florida Keys for a week of vacation. Just my husband and I - just relaxing and doing some fishing. It is a 3 hour drive for us and a condo right on ocean with a balcony looking out on the water. I am pretty sure I am doing the cold capping since taxotere can cause permanent hair loss. I thought I would try to keep what I have.

    My expander is doing great I think. I had two fills of 100 ccs and in the beginning they put in about 50 ccs. Tuesday, if I feel up to it, she will put in another 100 ccs and then I will skip the week of vacation. It feels hard a lot but the PS said I am healing great. I am sleeping on my back still but last night tried to lay on my side with a pillow and I did that for a few hours. I sure hope the port doesn't give me any problems.

  • Robin-S
    Robin-S Member Posts: 3
    edited October 2020
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    Hi, starting ACT this Thursday and just had my port put in. Still a little sore but not as bad as I had heard. I'm active duty Navy so grateful for the great healthcare I'm getting. My command is really supportive as well. I hope to keep working but no ship visits for me for a while. My big concern is neuropathy so I'm going to use the cryogenic gloves and booties during the treatment to hopefully stave it off. Ready to get started to get this over with!


  • moderators
    moderators Posts: 8,052
    edited October 2020
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    Robin-S, we welcome you here, and glad you have your first chemo behind you. We're all here for you in this process. And glad your command is behind you!

  • Eucalyptia
    Eucalyptia Member Posts: 17
    edited October 2020
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    Hello! I finally got my cocktail: taxol and herceptin. More info about my port this week/ planning on starting 10/28.

    I am considering cold capping- anyone else with a similar drug combo cold capping? Any words of wisdom or tips and tricks?

  • abbyrhodes3
    abbyrhodes3 Member Posts: 30
    edited October 2020
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    @eucalyptia - here is a page I found on site with more info about cold capping: https://www.breastcancer.org/tips/hair_skin_nails/...

    Unfortunately, the facility where I am going won't let anyone come in with me- even if I had opted for cold capping, it was still no. And doing the process solo, while it has been done, would be too difficult. A friend of mine opted for cold-capping, and lost only about 20% of her hair, she would estimate. Maybe a little more. This was a year and a half before Covid- she might not have the option at her hospital now. I believe she was on ACT which includes Taxol. And Herceptin. In her case, one of her family members was able to accompany her every time and be her cold-capper. She said they actually had a lot of laughs together for it- managing the ice cooler, getting set up, swapping out all the caps made the day fly.

    That said, it's not easy and extends your time for each process since you have to start a substantial amount of time before the meds and continue after each session for a while. I'm honestly not sure if, even with help, I'd have been up for it!

  • WC3
    WC3 Member Posts: 658
    edited October 2020
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    AbbyRhodes3:

    I had difficulty swallowing due to the steroids as well. The withdrawal made my throat feel very tender and bruised. You are the first person I have come across who has experienced similar issues.

  • abbyrhodes3
    abbyrhodes3 Member Posts: 30
    edited October 2020
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    @wc3 - glad to know it's not just me! My throat was sore, as well, for several days after I was off of the steroids. They have me on a pretty heavy dose day before and day after. I was only 80% sure that's what the swallowing issues were, first round- but they started right up this round during my day-before steroids so that confirms it.

    I mostly just have to eat small bites and have water or iced tea at the ready. I do think it's about dry mouth from the meds. Manageable, but not fun!

  • PolishWonder
    PolishWonder Member Posts: 6
    edited October 2020
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    Hi! I guess I go here now. I was diagnosed Sept 9th, 2020 with Invasive Ductal Carcinoma with a Metastatic lymph node, Stage IIB. I'm ER+, PR-, HER2- with no genetic abnormalities. I'll be doing 12 weeks of Taxol, then 4 biweekly treatments of AC, then surgery, and radiation. I just finished my 2nd round of taxol. So far, so good. The dexamethasone keeps me up 20+ hours a day and I've had very mild numbness in my hands, but nothing I'm worried about yet. Getting anxious for the weeks to come though.

    Hoping to make some friends and support here. I'm always happy to listen.

  • marie914
    marie914 Member Posts: 152
    edited October 2020
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    Good Morning.

    I can't say I'm glad to see any of you on this board because I wouldn't wish that on anyone. However, I am glad to meet you and to be going through this with you. As I said I am starting chemo November 4 but I wanted to learn from those that have gone before. I haven't gone for my chemo education yet - soon they should schedule it. I was reading my first posts on this thread and was laughing at myself. I talk out everything and then once I decide I go forward. I haven't cried over my diagnosis or anything yet. Some say it will come but I just feel this is what I have - let's find out all we can and move on. I hope to continue working through most of the chemo. Only 4 treatments and the 2nd is the day before Thanksgiving, third is December 16 (work is really slowing down) and then January 6. I work at home and have done that for at least 6 years. I used to travel about 8-10 times a year but now I just do webcasts because of COVID - I don't have to show myself so that helps too. As you can see I'm quite chatty. We are leaving for a vacation today until next Saturday. So no doctor's visits all week. I have had at least 2 doctor's visits since middle of July so it is a vacation.

    Polishwonder - I am glad you found this place. Everyone is so helpful and supportive. Some people use cold mitts for your hands.

    Abby and WC - so you take steroids the day before and the day of? I thought they were just infused before your chemo infusion. Good advice for the sore throat.

    Abby - I understand sometimes about feeling like is this really worth it? I hope so.

    warrior - thank you for writing about what you are experiencing. It helps us that are going after to hear what could happen and if it does what we can do about it. We have to stick together.

    Question: If you had your infusion on Wednesday - what do you start feeling bad? Friday or Saturday?

    Robins - Thank you for your service! I am thinking about the cold for my hands/feet but my oncologist said I didn't them because it was only 4 rounds of TC. I wasn't sure.

    Eucalyptia - looks like we will be about the same time to start chemo? Port next week. I am on a vacation next week or the port would have gone in then. Chemo starts 11/4. The port wasn't too bad for me. Just the first day or two my neck was a little sore to turn. My BS wouldn't let me shower for 5 days or drive. Today is my first shower. I had trouble looking at my neck the first few days. She put it in my upper chest area but then there is a catheter going up on my neck and an incision there. Not really sure since it doesn't look like other ports I have seen. It looks better now. I iced it all evening after I had it and during the night. Minor bruising the third day and nothing now - 5 days out.

    rbbaker - How are you doing? I think you would have had your first chemo.

    idkwhatnext - I thought of not having a port since it is only 4 treatments but they said TC taxotere cytoxan will burn my veins. ?? Oh well I have a port now. Hope it helps.

    Pamperedmama - You might have had your second chemo by now. Hope you are doing well.

    My place uses DigniCaps for cold capping. I think the nurses do it; I will find out more during education. I haven't decided to do it or not. I am having 4 rounds of Taxtore/cytoxan.


  • abbyrhodes3
    abbyrhodes3 Member Posts: 30
    edited October 2020
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    Hello! @Polishwonder- glad for you that your symptoms are limited so far and hope that continues for you. The dexamethasone definitely keeps me up, too - had about 3 hours sleep the night before chemo.

    @marie914 - yes, they have me taking 16mg of dexamethasone day before and day after chemo. I take it that it's about preventing leg swelling from vein seepage after the meds, but I can't say I've had *any* puffiness. I'm going to ask about lowering the dosage due to the sleep disturbance and the trouble swallowing (for several days each round) that it's causing me.

    Other than that annoyance and some diarrhea, my day two after round two is uneventful. I didn't feel up to grocery shopping, so ordered from Instacart. That's on the way. Am doing some stuff around the house and resting in between.

    @marie914, for round one my worst days were days four through seven. I didn't feel 'peppy' until day 10, but am thankful that I did feel like myself from then through day 21. Just need to remember on the rough days that the better things are coming!

  • Elledwriter
    Elledwriter Member Posts: 18
    edited October 2020
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    Hi Marie,


    Just read your post and my chemo schedule is exactly the same days as yours. Nov4, Nov 25, Dec 16 and last one on Jan 6! TC as well, and I ordered the DigniCap to try and keep my hair. We should keep in touch to see how we’re both doing. Chemo buddy!


    Leslie

  • marie914
    marie914 Member Posts: 152
    edited October 2020
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    that sounds great Leslie! I am on a vacation in Florida Keys this week so I’m going to miss the education session this Wednesday. They said after my chemo next Wednesday the 4th I should stay late for it.

    Are you icing your hands or feet for neuropathy? My oncologist said I shouldn’t have to ice with just 4 treatments but I want to prevent neuropathy. What state are you in? I’m in Naples Florida. They just ordered all my meds (3) one for nausea just in case. One is the steroid and I’m not sure what the third one is. I ordered my starter kit for the dignicap today.

  • Elledwriter
    Elledwriter Member Posts: 18
    edited October 2020
    Options

    I’m in CT, Marie. I ordered special booties and mittens from Amazon that have ice packs built in to hopefully hold off neuropathy. I also ordered a portable ice chest to keep extra ice packs in since they’ll stay cold for an hour, I’ll have to switch out cold packs.

    I am nervous using the DigniCap. It’s painful the first 30minutes I’ve heard, but then your head goes numb after that.

    After the chemo, I’m told I’ll have about 4 weeks off before starting 3.5 weeks of radiation. I’ve talked to others about that and it seems pretty easy.

    Can’t wait for April when it will be behind me!

    Enjoy your vacation! The keys are beautiful!

  • marie914
    marie914 Member Posts: 152
    edited October 2020
    Options

    I went to get some cooling mitts and socks from amazon but not sure which ones to get.