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Starting chemo June 2021

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  • maura1
    maura1 Member Posts: 12
    edited September 2021

    Have any or you had elevated liver enzymes during chemo? I had my routine labs drawn before getting chemo on Friday, my ALT, and especially my AST were both elevated. They’ve never been abnormal before. They debated putting off my chemo until next week but decided instead to just decrease the dose. I have a ultrasound of my liver scheduled for tomorrow and now I’m terrified by the thought that it may have spread there. Any one else have this happen

  • alwaysmec
    alwaysmec Member Posts: 107
    edited September 2021

    I don't know what elevated number is considered unsafe, but when I was looking at a graph of my counts after chemo ended, I noticed AST had gone above the normal range before the fourth round of 6 on taxotere and carboplatin. The number was 51 and it was flagged as High. My onc never mentioned anything, and I still received an infusion. During my next blood draw it went back to normal range. The last three draws were at 27, 22, and 23.

  • Jcatron243
    Jcatron243 Member Posts: 6
    edited September 2021

    My round 2 liver enzymes went from 33 to 167 or so. We did a reduced dose of chemo (TC). I was told if your levels are 3 times the “normal” high then they would have stopped my dose for a week. I had a margarita and Tylenol the day before my blood work. I was told no more alcohol or Tylenol. My enzymes have been ok since then.

  • Jcatron243
    Jcatron243 Member Posts: 6
    edited September 2021

    I finished my chemo infusions Wednesday. Yay me, but the effects this round have been so bad! I’m struggling with hydration, but I’m trying. The nosebleeds have been really bad this weekend and so has the joint pain. I was really worried after sleeping all day Saturday and most of Sunday, normally I’m ok enough on Saturday to go for a walk. I will talk to the nurse tomorrow at the infusion center to see if I need to schedule for hydration.

  • K-Gobby
    K-Gobby Member Posts: 144
    edited September 2021

    Kathy G here.

    I forget to say that I am IDC/Left Breast mass 5.2/ER +/PR-/K-27-High 22/Fish -

    My treatment changed because i have BRCA-2!! In one day, I moved to a 12 week mix of taxol and carbo. Bing bing. My last RN gave me a 4 pill mix of the ant nausea and bing bing. This week so much better. Mostly OK with today. I have just found out i get a 4 dose every two weeks after the 12 with another chemo. Then, I get mastectomy and ovaries/fallopian tube removal. Beautiful Brca-2 loves those body parts. To think in mid June of 2021 I was a seldom sick, post menopausal women most worried about dropping my extra weight. Wondering what job i could get at our college to leave the dreadful supervisor i work with. Boy oh boy did things change. By thursday I will have no hair.

  • mle42
    mle42 Member Posts: 124
    edited September 2021

    Hi all, I disappeared for a couple weeks there, had a rough time after taxol #1. In the ER because of fevers and suspected infection, ended up on antibiotics. Came in for taxol #2 (I’m doing dose dense so it’s every 2 weeks) and my doc said no chemo today, you’re going back to the ER. I was absolutely gutted to have treatment delayed, but in retrospect know it was the smart thing to do. They were worried about another infection and symptoms of pulmonary embolism - all tests for those came back negative but my heart enzyme (troponin) was elevated so I got to spend the night under observation while they did more tests. Still don’t know what’s going on there, i was referred to cardiology but it takes weeks to get an appointment. Possibly it’s a reflection of the cardio toxicity of adriamycin. Anyway, when I finally got to do taxol cycle 2 last weekthey also gave me a red blood cell transfusion because a lot of my concerning SEs could be tied to anemia (racing heart, fatigue, persistent shortness of breath). And wouldn’t you know, I have felt SOOOOO much better since then. Take home message, gals, even if your hemoglobin doesn’t meet the strict criteria for a transfusion (<8 at my hospital, and I was at 8.4), if you are symptomatic, talk to your Dr about treating the anemia. Turns out that when you aren’t also anemic, taxol by itself isn’t so bad to cope with! I have gotten the bad muscle and joint pain, but my onc gave me some oxycodone which really helps to get through the worst days. So I feel like I’m back in the saddle now, just two more rounds to go!

  • mle42
    mle42 Member Posts: 124
    edited September 2021

    Jcatron, CONGRATULATIONS on finishing chemo!!!! I hope you were able to get some fluids to get past this last hump.


    K-gobby, the BRCA2 finding and resulting change to treatment sounds like a lot to wrap your head around. Life changing, for sure

  • btwnstars
    btwnstars Member Posts: 81
    edited September 2021

    I don’t think I’ve had any elevated liver issues, but I don’t go over every number with them. Mostly monitor wbc, platelets and neutrophils.

    kgobby - sorry to hear about the genetics result and changes to your treatment. But sounds like things are planned out well and will help you prevent recurrence.

    Mle42 - sorry to hear about your struggle but glad things are getting back on track. I also just had my 2nd taxol this week.

    LoJ - I think sometimes the process just wears us down, my SO and I were just discussing this. Maybe bcz you start to see the end in sight so it’s like hurry up already? While my experience was different, I think your plan is common and great that it’s working. It will be out soon!

    I met with MO this morning bcz I just have so many questions and little things to sort out. I get nervous about it before like ‘am I wasting her time’ but after I’m always thankful and feel better. I like my doctor but I haven’t been too impressed with the office or phone line, seems like I always get bounced around and cut off.

    I am thinking of switching to a facility closer to where I live for radiation. I think it’s pretty standard treatment. I have to start making calls and figuring out what to do. At same time I like the radiation oncologist I met with and came recommended from my PS, but that could just be bcz they r associates. Things to think about…

    Hope everyone is a hanging in

  • mle42
    mle42 Member Posts: 124
    edited September 2021

    BtwnStars, I’m also planning to switch facilities for radiation. I currently have a 3 hr drive to my treatment center, which I can do for every 2 weeks chemo, and I will do for surgery, but not going to be possible for 5 days per week radiation! I’m hoping it’s a seamless process and doesn’t introduce any delays, I’ve heard it’s pretty common for people to switch at that point. There is only one hospital close to me, the next closest is >1 hr away. So for better or worse the decision is easy.

  • Dicon
    Dicon Member Posts: 32
    edited September 2021

    Hi everyone. Took 3 weeks off to recover from AC#4. Took my list of questions to my MO today. Starting Taxol Tuesday on a 3 week schedule to start. Here’s her response to a few questions. My bloodwork was perfect she said. That’s what 3 weeks without chemo allows! Also gained back 4 lbs with heavy carb diet. I did not need to lose weight and was getting a little too thin.


    1. COVID booster: she said to get it and we will test for antibodies and if it’s not enough, do a second shot.

    2. Cold capping. Not needed with Taxol. It’s Taxene that can kill follicles. She said 98% of patients regrow their hair.

    3. Taxol vs AC. Taxol Not nearly as tough, should not kill my appetite and if Neulasta did not cause a lot of bone pain, may not have a lot with the Taxol. About 20% of people have an allergic reaction so loading up on steroids right before treatment is critical. If nothing bad, can reduce steroids before second treatment.

    Everybody is different, so lean on your own MO for answers. Mine has been in this field 25 years in a Highly reputed Cancer hospital, I think she’s good, that is when I can get her, instead of a nurse or PA.

    Thanks everyone for posting, really does help keep me out of the pity party.

  • loverofjesus
    loverofjesus Member Posts: 174
    edited September 2021

    Hi everyone. Had my 4th Taxol Tuesday. Hardly any side effects. I do get a little achy on day three but it gets better after that.

    I hope everyone is good. I’m planning for surgery to be coming up after chemo is done. I’m worried because I may have to have skin grafted from another part of my body if the skin left is not enough for implants. I’m praying it will be.

    I hope you all have a wonderful weekend!!

  • K-Gobby
    K-Gobby Member Posts: 144
    edited September 2021

    K-Gobby- I talked with the DR at last Fridays infusion. I asked about this rash on my arms and she said it is a chemo rash. If it itches, we will go to a dermo, or if it changes in looks. I asked her a question my sister had. If the mass shrinks to nothing, do we cancel the rest of the chemos and just call it quits? Dr. Patels answer, no, we do all 12. Then when those are done, i have one more chemo 4 times, every 2 weeks. That was new to me. Her goal is to kill every cancel cell in my body.

    December are the surgeries. I am not thinking nore worry about it now. Why? I do not have big breast, bust a double mastectomy is not something i thought I would have. Once i meet with the Dr. in early December I will ask her how i do not have a chest that I would never want to look at. Can you show me pictures? It also seems my pelvic ultrasound last week shows a 3cm cyst in my left ovary. The doctor called and said another ultrasound in early Dec after chemo ends, will show if it has grown. With early menopause and long gone ovulation, it may have been there years.

    Thank you all for sharing your journey. I had my 5th of 12 infusions today. The jouney continues.

  • Dicon
    Dicon Member Posts: 32
    edited September 2021

    mle42, sorry you had such a bad start with Taxol when we are expecting an easier time on it. Good information about anemia. Seems like anemia is so common after chemo rounds. So, taking iron would be the remedy? Our diets are so weird on AC and eating meat is a challenge with everything tasting strange.

    Hope you have a smooth second round

  • mle42
    mle42 Member Posts: 124
    edited September 2021

    Hi Dicon, I asked if eating more red meat or taking iron supplements would help with the anemia, and my doc said I would have to eat a whole cow - the problem with chemo induced anemia (at least in my case) isn’t iron deficiency, it’s a lack of red blood cells and hemoglobin. So a transfusion of red blood cells was required.

  • Dicon
    Dicon Member Posts: 32
    edited September 2021

    Mle, oh….that now makes sense. I though I was anemic with out of range rdw and dr Google said it was anemia. But yesterday my Onc said I wasn’t anemic cause red blood cells and hemoglobin was good. It’s primarily because I went a whole month off after my #4 AC transfusion and my blood numbers and organ numbers normalized due to recovery time.

    Taxol day 1…..

    Had first Taxol yesterday and I feel really good today with all the steroids and no sensitivities at all but then it’s always day 4-7 that’s the real test. Ive been hiding from my friends for months as the wig and weight loss will start the gossip but might brave it this weekend. Guess I can stuff a sock in my bra like I did in 7th grade.

    Surgery….…
    Those of you nearing surgery I can tell you that the mastectomy surgery process and recovery is SO much easier than the AC. I had virtually no pain except occasional nerve stab that disappeared after a couple weeks. I went home in the morning. But due to 20 lymph nodes being removed I had a big Seroma (lymphatic fluid) that took months to absorb and two needle aspirations but it was more inconvenient than painful and just a needleprick which is nothing after all the blood draws and infusions you have tolerated. At 74 I probably won’t do reconstruction, I would need skin expanders.

  • loverofjesus
    loverofjesus Member Posts: 174
    edited September 2021

    Hello everyone!

    I hope everyone is doing well with treatments! I know it’s tough but look how far we have all come!!

    I do have a question for you all though. So on the cancer side I have noticed breast tenderness during chemotherapy. Am I the only one. It’s not really what I would call sore, just tenderness. It could be from chemo, or maybe hormonal I suppose. I just want to know if anyone else has had this? I found one article about it on the internet stating that it was from chemo killing the cancer. I hope that is true. But anyone who has had chemo before surgery,have any of you had this?

  • kotchaj
    kotchaj Member Posts: 216
    edited September 2021

    LoverofJesus,

    Yes, I am experiencing the same thing where my tumor is located in my left breast. I did speak with my oncologist about it last week at my appointment and was also told that my tumor was "softening up", which means it is responding to the chemotherapy. I am taking that as a good sign that it is working!

    Not sure how anyone else's was, but my tumor was almost rock like when they went to do a needle biopsy on it and it was difficult to get the needle into because of that.

    We have made it this far and we aren't done yet:-) 3 Taxols down, 9 more to go then surgery in December.

  • K-Gobby
    K-Gobby Member Posts: 144
    edited September 2021

    Hi all,

    Mine has been sore too. Also, it feels like it is shrinking.too. 6 chemos down, and 6 to go with Taxol and Carboplatin. Then four more of another kind to kill it. My sugury is in December too!!!

  • Cancersux2021
    Cancersux2021 Member Posts: 5
    edited September 2021

    I go for first consult with medical O this Thursday at mercy piper breast center. I was wondering too if I should be looking around for 2nd opinion want to make sure not just going someplace cause they said to go there Thru Allina ? Let me know thank you I live outside of Min

  • kotchaj
    kotchaj Member Posts: 216
    edited September 2021

    K-Gobby,

    Congratulations for being halfway through! I'm so anxious and ready to get to surgery. I want whatever is left OUT of me. My oncologist also checked under my left arm; two lymph nodes came back positive for cancer, and the huge golf ball I had under my arm is gone. There is something in there (very small) now which she called necrotic tissue, I'm hoping that is all that is left of that dang thing. She did say that the surgeon would be removing that as well when surgery happens in December. 'm hopeful it will occur the first week of December as my work closes

    I go again today for Taxol #4. I'm now a third of the way through my 12 weeks of treatment. I cannot wait to be done.

  • mle42
    mle42 Member Posts: 124
    edited September 2021

    Hi Cancersux - and I think we all agree with that name! I knew from the start that I wanted to talk to different oncologists before making decisions. Because it can take a while to get appointments set up I’d recommend doing that now. That being said, if you meet with the first doc and you love them and are confident in what they are telling you, it’s ok to stick with them and cancel the others. For myself, I found that each of the 3 doctors I saw presented options differently, explained things in different ways, and having multiple consultations gave me the confidence to decide on what course of therapy was right for me AND pick the medical practice that was the best fit. That being said, if I had met with the doc I chose first instead of last, I might not have felt as strong of a need for those other appointments. (The first doc I was referred to was TERRIBLE, hadn’t even looked at my chart before coming in the room, felt like he was just punching the clock.) You are quite literally putting your life in this person’s hands. If you aren’t totally comfortable with them, do not settle!

  • btwnstars
    btwnstars Member Posts: 81
    edited September 2021

    Hi all -

    Was supposed to have 3/4 Taxol today, but WBC and neutrophils were too low for treatment. Needless to say, very bummed. I am just wanting to be done already and counting the days and now I will be a week longer. I tell myself it's just a week, but my original idea of being done with it all by Thanksgiving doesn't seem like it will be anymore. I shouldn't complain as I read of those of you who are gearing up for Nov/Dec surgeries. A good reminder that we all have to do what's best for our treatment, and just like we didn't cause our own cancer, we can't really dictate our treatment without listening to our bodies.

    Because my numbers were lower at my 2/3 Taxol, they had my blood tested on the in between week, it was still low but they decided against giving me any types of shots. I guess they should've done that, but who's to know with these things?!

    So Onc said she will give me neulesta next time on my 3rd treatment so I will hopefully be good to go for my 4th, final Taxol. I am dose dense.

    Besides dealing with all the factual, fun stuff, I've been thinking more lately about what transitioning out of this "being a cancer patient" will feel like and honestly have some fears and anxiety. It's just I've become so engaged in this existence and doing what I have to do. Now my mind is drifting to the idea of returning to work, where I have a 2-3 hour round trip commute. I can't even really remember how I used to manage maintaining house and dinner planning, etc. So it's kinda a double thing, returning (hopefully) from the covid bubble, along with from cancer life. I also think my ability to seem as ok as possible to most of those around me probably works against them understanding the challenges that come with all this.

    Oh also, my eyelashes, mostly bottom have been coming out a lot and eyebrows look thinner. I asked Onc about hair thinning shampoos and treatments like lashfood, but she wants me to wait on anything until after chemo is done. She also advised of waiting about a month until after chemo is complete to get the booster since the evidence of what chemo could impact isn't enough. Although I read that one study posted here that showed some promising results that chemo patients still had some vaccine efficacy even during/after treatment.

    sorry so long! wishing you all the best in your treatment plans....

  • kotchaj
    kotchaj Member Posts: 216
    edited September 2021

    BtwnStars,

    I'm so sorry that you weren't able to have your treatment. It is frustrating and depressing when we can't stay to a schedule. It's so hard to do when every single day can bring on a new symptom, side effect, etc.. Not having any control over any part of our lives during this is stressful.

    You made a good point in that none of us wished for this and listening to our bodies is key in how to respond to it.

    I've worked throughout my treatment so far and am looking at it from the other side. What would it look like to not be working right now? I carry our insurance so I have to work. Not sure what will happen in December when I have surgery. I am guessing it will depend on what type of surgery I have and how long I need to be off for.

    How do you transition out of being a cancer patient? I don't think I can go back to my precancer world. I'm not naïve as I was about cancer before my diagnosis. It has changed me completely. I feel like I am going to be waiting for it to reoccur for the rest of my life now. Maybe it doesn't work like that, I honestly don't know. And maybe we don't go back to pre cancer? Maybe we have to create a new life post cancer diagnosis? I know I can't be wonder woman anymore or John Wayne (he was the epitome to me of the strong, silent, type) my way through my feelings. I am learning to be kinder to myself than I used to be.

    Isn't it interesting as well as how many of our doctors have us do different things when others say no? I got my COVID booster already while I am in the middle of my Taxol treatments. I would have preferred to wait, but went ahead when they told me to. My husband and I both had reactions to the first two shots and this one was no different.

    I'm keeping fingers and toes crossed that everyone has an uneventful weekend and that all goes as planned.

    Happy Friday!

    KotchAJ

  • mle42
    mle42 Member Posts: 124
    edited September 2021

    Btwnstars, I feel your pain. When I had one of my infusions delayed I was just gutted. My carefully timed schedule, thrown out the window! One more loss of control. And yeah, my eyelashes, which hung in there through all of AC, are now almost gone on taxol. I started wearing eyeliner just so that my eyes don’t look so bald.

    I’m gearing up for my last chemo (4th dose dense taxol) this Wednesday! But am really worried that my pre-chemo labs will come back bad enough they will make me postpone. I’m on neulasta and my white cell counts have always been fine, but blood work before my previous infusion showed really elevated liver enzymes - that time I got a dose reduction instead of postponing. Bigger worry is a heart enzyme (troponin) has been consistently elevated for a month now, and neither oncologist or cardiologist can figure out why. If it’s the same, they say I’m ok for the last chemo, but if it spikes up further…. Anyway, think good thoughts for me this week, would you? I so desperately want this part of treatment to be over, and to not have to reschedule surgery again (currently planned for Nov 1).

  • mle42
    mle42 Member Posts: 124
    edited September 2021

    KotchAJ, and others still working, I am so impressed with you!! I hung in there working with just a few days off each cycle for about the first 2/3 of treatment then called it quits- realized I had the energy to either make meaningful contributions at work, or take care of myself, but not both. I also carry our insurance but am INCREDIBLY fortunate that my company has a generous short term leave policy that allows me to keep insurance and full pay. I wish everyone had that luxury!

  • btwnstars
    btwnstars Member Posts: 81
    edited September 2021

    KotchAJ - yes what you said about control. I realize control is such an illusion and cancer def reminds you of that. I agree, there's no "going back" to what was before, but maybe like you say a new normal way. I don't want to constantly live with that reoccurrence fear, but not really sure how not to. Not sure if you are US based, but is your job protected by FMLA or something like that? Where even if you don't have paid leave to take time off for surgery, you can take unpaid leave and your job is still held for you when you return? Also doesn't lapse insurance, tho I think you have to pay a prorate for premium.

    mle42 - Yes for last treatment! Wishing you the best with your labs. And I hope the doctors figure out or come to some conclusion on it. I think that's one thing that is also hard to understand until you are going thru this, all of this "practicing medicine" is a lot of practice! I think people think that the strategy for treatment is more concrete than it really is. But yea, you will be fine this week!

    I think I am only able to work with working from home. If I had to do the regular routine with commute and all, not sure I could get thru with the fatigue. That said, so thankful to have work as a distraction. There's just not enough going on in my life otherwise to keep me from waiting around for treatment. But yes, also very fortunate to have a job with options and financial support either way. I can't imagine having to deal with that on top of diagnosis.

    Hope everyone is having a good week.

  • Calvin71
    Calvin71 Member Posts: 8
    edited September 2021

    how did all turn off it with the liver issue ?

  • Calvin71
    Calvin71 Member Posts: 8
    edited September 2021

    hi Maura

    Hi did it all work out with the liver ?

  • maura1
    maura1 Member Posts: 12
    edited September 2021

    Hi Calvin71, They got another set of labs the morning I was scheduled for my infusion and my AST and ALT were both still elevated. They decided to decrease the dose of Taxotere by 25% and administered Cytoxan as normal. I had a liver ultrasound a few days later and it all looked normal, so not sure what the cause was exactly, but so relieved that the ultrasound was normal. My next follow-up with my medical oncologist isn't until beginning of November. How have you been?


    I'm now preparing to start radiation. Had my planning simulation today, so should hopefully start in the next week or two. Total of 6 weeks. Looking forward to getting through the rest of active treatments!

  • kotchaj
    kotchaj Member Posts: 216
    edited September 2021

    mle42- I'm keeping my toes, fingers, eyes, legs and anything else I can cross for you that you will be able to have your treatment tomorrow!

    BtwnStars-As far as me working, well, my husband and I moved from upstate New York where I held a pretty big job in a hospital system to my hometown in southern Illinois a year ago October. I started my current position at a junior college where I get to work with our athletes and international students this February. I have to be here a year for anything to kick in like FMLA or short or long term disability. It's all good because they have been awesome to work with me. I've about blown through my sick time as I've had days where I just couldn't function and needed to rest. We will be closed in December for two weeks over the Christmas holidays and I'm hoping to talk my surgeon into doing the surgery then so I won't have to use my vacation time for it. If I do, I do, but I'd prefer not to.

    I truly feel that our move here was meant to be. I wouldn't have been able to continue at the pace of my old job or have the support system we do here. Things sometimes happen at a certain time for a reason.

    Can we talk toenails today? As in, my left one this past weekend looked like I was getting an infection around the nail. I've not gone for any pedicures even though I've desperately wanted one. My nail today now looks like it has a fungus and is halfway between black and purple on the right side all the way down. It's got more colors on it than I would have picked out at the nail salonWinkingthe rest of it looks kind of yellowish. I had my weekly appointment today with my oncologist before my Taxol infusion and he said it is most likely related to the Taxol. Yay. So he has me on an antibiotic for 7 days and he will check it next week when I'm back in there again.

    Anyone else lost any toenails? My eyelashes are waving goodbye on Taxol even though they hung on through AC AND I"M GETTING LEG HAIR ON THE OUTSIDE OF MY LEFT LEG ONLY. Sorry for the caps aka yelling, but good grief. I told the girls at chemo today that I'd be happy if the leg and underarm hair never returned, but this whole half my leg thing has annoyed the daylights out of me, lol.

    Here's to another week. We are heading towards the end of Tuesday ladies. Me and my half hairy leg wish you all a great week!