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Chemo starting December 2018

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  • Flower216
    Flower216 Member Posts: 87

    Hi Friends,

    My final treatment was last Tuesday, and I am still zapped of energy and have slight bone pain. Usually by now, I would be back at Zumba, but just the thought of it is exhausting.

    Angie....you are amazing! You have the best attitude and you are already looking to give back to others! Very special!

    Becky...how are you doing? I am sympathize with you about the nail discomfort. Someone asked me to describe it...I had a hard time and wound up saying almost like a pins and needles on upper part of fingers.

    Lillian...you look great!!!!! Congrats on last treatment!!!! Feel good!

    OC...Welcome!! We are a great group and its nice to have you join us!! My MO said to start radiation about 4 weeks after last treatment, although it could really be between 3-6 weeks. My last treatment was 2/5, my simulation is 2/27. I am ready to start radiation the following week but I will see what RO says.

  • BeckyJL
    BeckyJL Member Posts: 81

    You look great Lillian, even if you are tired.

    As for time between chemo and radiation. I had my last chemo on Feb. 8. I see the radiation Oncologist again on Feb. 22 and I believe we will start radiation itself around the week of March 10th. We would start earlier if I wanted both MO and RO said. I'm waiting because I'm going to go see my son in Ft. Lauderdale the first week of March and told them I wanted a bit of a break. They were fine with that. But they also told me we could have started sooner, so I'm not sure about the "normal" timeline.

    Tomorrow I get blood drawn. Kind of nervous about how low my counts are going to be based on how I'm feeling. I'm planning on visiting my daughter at college this weekend and am a bit concerned with my fatigue and possible really low counts. I bought masks and have an abundant supply of hand sanitizer, so hopefully I'll be fine!

  • AngieInAmsterdam
    AngieInAmsterdam Member Posts: 120

    hello everyone,

    You’re all too kind. But honestly, I’m just an ordinary woman going through an extraordinary journey. Every day, I’m inspired by all of you and others going through this life altering experience. Despite pain, heavy SE and hospitalizations, you soldier on and continue to endure the poison. Which is why I plan to give back. Be it in a small way or raising awareness and funding via golf tournaments.

    As promised, went to hospital gym today. Fellow breast cancer warriors and physiotherapists sending greetings from across the pond.

    Wishing you all a wonderful weekend.

    xx

    image

  • AngieInAmsterdam
    AngieInAmsterdam Member Posts: 120

    Oh, I also wanted to mention this link below. There are many wonderful retreats for cancer survivors and their families at low or no cost. These retreats are offered throughout the US.

    https://blog.yo.support/2018/12/free-and-low-cost-retreats-for-people.html

    Hope you’ll find one that fits your preference. Would make a nice getaway. We all certainly deserve it

    xx

  • BeckyJL
    BeckyJL Member Posts: 81

    Okay, some possible blah news for those following my treatment schedule. I'm a week out from my last TC treatment. This is the worst I've felt from the chemo itself (not the neulasta). I'm still extremely fatigued - I haven't started the upward trend yet. It's not debilitating, but it could be if I let myself give in to it. And the taste thing - way worse. It's not just that I can't taste anything this time, it's that a lot of things taste bad. I'm having mild stomach issues too - not throwing up, fortunately, but the nausea is more pronounced this time. It was never really an issue before. So advice for those of you approaching your fourth and final treatment - from my perspective for whatever that's worth - gear up for a bad week or two. If you haven't needed help yet, line some up. Don't make social plans (I did, and it was a big mistake). And stock up on soups, especially broth types like chicken noodle. That's been the easiest, most comforting of all the uncomfortable foods I'm forcing myself to eat.

    I honestly thought I could gut it through this week and all would begin to be golden by today - WRONG!

    Don't fear it - it will change nothing, and I am gutting it through- but be ready for it . And I will continue to gut it out next week and the week after, what choice do we have. And I KNOW that this will pass. But good golly, miss Molly, I wish it were just a little easier.

  • AngieInAmsterdam
    AngieInAmsterdam Member Posts: 120

    Hi Becky,

    Sorry to hear that you're still feeling so fatigued from round 4. I can empathize with you. It's been nearly 2 weeks since my 4th and I'm still so beaten by it. Had blood work done on Friday, and I was below acceptable range with all my numbers. My neutrophils and RBC were way too low. I have to go back on Tuesday morning before beginning Taxol treatments to do more blood work to see if I have improved over the weekend. If not, MO will decide on what to do regarding treatment. Although, I believe she wants to keep me on schedule. So, we'll see if there are any options.

    I've been able to maintain a steady weight since beginning chemotherapy. However; I'm not feeling like wanting to eat that much. And trying to stay hydrated is a challenge. Water tastes so much like chemo drugs. Yuck! Thank goodness for green tea. At least that still tastes like tea.

    Sending you lots of positive vibes, though I wish I could do more. Stay positive. I know you are! It's not easy, but a strong mind will get you through.

    I'm not sure if you're a country music fan. But I found this on my Twitter timeline and couldn't stop laughing. Kinda feels like my mood right now. Hope it cheers you up a bit. 😁

    image

    xx




  • kber
    kber Member Posts: 243

    I'm done with 3 (out of 12) taxol / Carboplatin weekly treatments and starting to settle into a rhythm.  Friday is treatment day.  Saturday and Sunday I hibernate.  I mean I really crash - like I could easily sleep 20 hours a day and when I'm awake I'm shaky I'm so physically tired.  Monday I start to climb out of the fog and have been able, so far, to go to work and be reasonably productive.  By Tuesday, I'm still tired, but my head is clear and I can function somewhat normally.  Wednesday and Thursday are "good" days and then Friday the fun starts all over again. (Whee!)

    A few positives - we decided to cut the steroids back a bit as I am not really nauseous and I've shown no allergic sensitivity.  One of the reasons I crash so hard, I think, is that I don't sleep Thursday or Friday nights with the steroids streaming through my system.  

    As I said, I'm not nauseous like I was on AC, but I'm not really hungry either.  I've lost about 12 pounds and it's not slowing down with the new drugs.  That said, I'm overweight to begin with so have some cushion.  If this was weight watchers I'd be killing it!  As it is, this whole "trying not to lose weight" is completely foreign to me and it's a bit of a struggle.  Weird!

    My blood counts and liver / kidney numbers remain acceptable so far, so hopefully I'll be able to stay on track.  I've got 9 o these bad boys left and I just want it to be over with!

  • BeckyJL
    BeckyJL Member Posts: 81

    Angie, that did make me smile! Each day I'm climbing out of it a little bit more. I hope tomorrow morning brings positive news for you.

    Kber, hang in there. No matter when any of us started, we're all closer to being done than we were yesterday. That's how I try to look at it when I'm feeling blah. And now, it feels like it's getting very close. I'm at the point where instead of waiting for the SEs to hit, I'm waiting for them to fade. Instead of googling when my hair will fall out, I'm googling when I might expect it to start growing again. Instead of describing new SEs or how bad they're getting, I'm describing how they are just starting to fade. Today, just a little taste came back. How wonderful! Eventually, all of us will be at this point!

  • kber
    kber Member Posts: 243

    Thanks, Becky!  I'm actually feeling pretty OK today.  It's weird how I have two totally lost days, and then Monday I can pop out of bed and feel almost normal.  In a way, I don't mind.  It's like I get it all done by crashing hard, then rebounding hard too.  The one weekend where I pushed myself and didn't sleep or rest as much, I rebounded more slowly and had a crappy week, so maybe it's just a matter of listening to my body and responding accordingly.

    I can literally feel myself feeling better throughout the day on Mondays.  My fog starts to lift and I can string a few thoughts together coherently.  I end the day less tired than I began it.  It's like nothing I've experienced.   (But I guess we all could say that about this whole wild ride, right?)

  • AngieInAmsterdam
    AngieInAmsterdam Member Posts: 120

    Hi Becky and kber,

    Had my first Taxol infusion today. Went in early for bloodwork to make sure numbers were up. Anticipating that I had to do blood work, I made roast beef dinner Sunday evening. That must have really work because my neutrophils went from .8 up to 4.2! The nurse was really surprised.

    12 week infusions feels like a lot. Not sure what shots they gave me today with the infusion, Don’t remember, didn’t ask, but it really made me feel groggy! Thought I was going to knock everything all over the place. Barely could find my way to take a bathroom break. Felt cold, so requested a blanket, and then slept all through treatment. Kinda needed it, since not getting much sleep from last night.

    Kber, since you gave such great details regarding your experience with Taxol, I now know what to expect. Have been sleeping all day since home from infusion. Finally waking up. Need nourishment. Feel like a bear coming out of hibernation.

    Hope everyone is doing ok. Thinking of you all.

    xx


  • mcbaker
    mcbaker Member Posts: 1,856

    You probably got benadryl, which put you to sleep. You also got a steroid, which stays with you longer. Expect a busy day. Then the next day you will be tired, from steroid crash. Then the rest of the week will be relatively normal, until you begin all over. It all gets more intense through the 12 weeks, but you get used to it.

    I had some liver Sunday, interested in seeing what it does to my bloodwork.

  • kber
    kber Member Posts: 243

    Yes - between the Benadryl and the steroids to fight nausea, it does mess with your circadian rhythms for sure -  I'm not sure what a "normal" sleep schedule even feels like anymore!  

    I've asked my team if we can cut back some of accompanying medications since I don't have any nausea and I've shown no inclination towards an allergic response.  They are willing to try this week - I'll report back.  It just seems like so many of the SE's are not from the actual Chemo drugs and if we could cut back on those other drugs, the rest might be more manageable.  (Like the steroid crash!  Seriously, I find myself babbling and bouncing off the walls immediately post treatment and then totally falling of a cliff.)

    Very interesting about the beef.  I'm not a red meat fan and I worry it might mess with my stomach right now, but maybe I'll have to try it.  So far my white blood cell counts remains normal, but my red blood cells are a bit below the reference range.  I do love spinach and have a spinach salad most days.  I actually do enjoy chopped liver, but usually it's just a holiday treat.  Maybe I'll add that to the menu.

    I find that I am bouncing back pretty quickly by Monday (treatment day is Friday).  It's almost disconcerting how dramatic the change is from Sunday (a totally "lost" day) to Monday, where I pretty much feel like myself.  I have a friend who just finished her 12 Taxols and she warned me that by week 6 the fatigue hangs on longer.  Something to look forward to.

  • Biggdan
    Biggdan Member Posts: 2

    wife’s Radiologist says 4 weeks. And that’s what we are going with. 7 days past last infusion so three weeks until Rads begin.

  • lilliangish
    lilliangish Member Posts: 54

    Biggdan, it sounds like your wife is about a week behind me. I had my last dose (4th round) of TC on Feb 4th, and I'm almost clear of the side effects. Rads for me begins March 4th (or thereabouts). I say this so you and she know....that in about a week, if she's like me, she'll feel tired but otherwise pretty ok. And your radiologist and mine agree on the schedule. I'm resting up for radiation and starting to get outside more and more to shake off the chemo cobwebs. So glad it's behind me....and I wish the same feeling for your wife.

    My MO substituted Taxotere for Taxol this last round. I found it more tolerable, but fatigue this past week was INTENSE! My worrisome side effect is some tingling in my feet, which will hopefully go away in the near future. My left eye twitches a lot, and I really hope that goes away as it looks a little creepy when I talk to people...haha. Otherwise, I'm starting to feel back to normal. That was a hella long 12 weeks!

    Loved the picture from The Netherlands and all my best to you all there. Keep fighting the fight!

    My favorite country song title was "This isn't what I signed up for" ~ pretty much sums up breast cancer for me.

    I've finished chemo but you'll see me here rooting for you still in treatment. Never leave a soldier behind is my motto.

  • Neetu_Tayal
    Neetu_Tayal Member Posts: 2

    Hi All,

    I was diagnosed with Metastatic Breast Cancer in Dec 2018 and 26th December started first Chemo cycle with Paclitaxel and carboplatin 3day cycle every week with 2 weeks gap in each cycle.

    D1 - Herceptin 300mg+ Paclitaxel 100mg + Carboplatin 150mg

    D2 - Paclitaxel 100mg + Carboplatin 150mg

    D3 - Paclitaxel 100mg + Carboplatin 150mg

    Now is started second Cycle on 16th Feb.

    Every time I go for a Chemo, my WBC drops down below normal ranges as low as 1.3-1.4 (Normal range is 4.0 - 11.0). The doctor then suggests to have two injections Neukine 300mcg and then the WBC boosts again for next Chemo day.

    Is that something common or exceptional for me ?

    I do have other side effects like fatigue, low appetite etc. and Backpain is what seems permanent now.


  • BeckyJL
    BeckyJL Member Posts: 81

    Hi Neetu.

    Yep, sounds "normal" to me. With my fourth round of TC, my WBC was 0.9. My neutrophils also dropped precipitously low - around 200 (Normal is considered 1500 I think, and low is considered 500). I went the Neulasta route. With our different diagnosis and drugs, your SEs may be different, but it sounds similar to mine and what I've read from others here.

    I'm waiting for all the SEs to fade away. Each day the fatigue diminishes. Unfortunately, I lost more eyelashes. I'm afraid they might all be gone soon even though my last chemo was two Fridays ago. That means the leaking eyes will continue until they grow back, ugh. I"m also ready for the fingernail pain to GO AWAY. But otherwise, things are improving.

    Hope you all have a great day today with minimal SEs and maximum energy.

  • mcbaker
    mcbaker Member Posts: 1,856

    My right eye twitches, my left eye drips. I am torn between wearing shoes to prevent injuries to my feet, but anything touching my toenails makes them hurt. I love to sew, but right now I am making a cap out of some lightweight jersey, and the tactile component of sewing, especially with that fabric, is almost more important than the visual. All else set side, today is a good day, even the snow falling outside. Despite the fact that I can't do the deep cleaning, my apartment looks superficially fine. A rare occasion for someone who sews.

  • kber
    kber Member Posts: 243

    So I find myself getting anxious the 24 hours before chemo days.  Knowing what's coming, knowing I'm going to willingly walk in and submit to my weekly poisoning session, knowing that for 2 days I'll be completely out of commission, is kind of a mind f***.

    My head knows that this is necessary, but my gut is rebelling!  And it's not all the time - really just the day before.  I can see how people develop PTSD after treatment.  

    I think the rational take away is I should take advantage of the phycological counseling offered by my practice and get my hands on some coping tools.  Unfortunately, a tall stiff drink isn't really an option these days, tempting as the thought is!  Maybe I'll call the psychologist today and see if she can stop by on Friday while I'm "in the chair".

    (One thing I like about my practice is that if you want, they will schedule consults from folks like the psychologist, nutritionist, NP, etc, while you're getting chemo.  Very time efficient!) 

  • JCSLibrarian
    JCSLibrarian Member Posts: 548

    I have been on the three week cycle of Abraxane since the end of December. First problem was the white blood cell count. I had to skip the last infusion of the first cycle due to a really low WBC. The MO lowered the dose and we proceeded. I was able to complete all three of the second cycle. Then could not start the third cycle as my creatinine count had gotten really high. I have had two rounds of IV fluids and am drinking 64oz of water daily at home. No one has any idea why the kidneys are being impacted other than the chemo itself. I am hoping to have a PET scan at the end of this third cycle to see if the poison is working it’s magic on the tumors. Hasanyone else had this happen? Other than these two problems, I have no side effects. Hair loss, but no nausea, diarrhea or neuropathy. I am grateful for that, but would like to get the PET scan so I can relax a bit from the concerns and get some good news for once.

  • nanette7fl
    nanette7fl Member Posts: 412

    Today is my last chemo (Taxol) session!! I remember when this trip first started how scared I was...how I never thought I would make it to the end of this round!

    Thankful I've learned a LOT about me in this past 12 weeks and ready for the next phase .... surgery.... losing part of me to get ahead of this freaking cancer!!

    I'll try to remain as cheerful and positive as I can and I am hopeful ... ever hopeful things will improve for us all.

  • AngieInAmsterdam
    AngieInAmsterdam Member Posts: 120

    Hi everyone,

    Nanette, congratulations on finishing last Taxol treatment! Getting through chemotherapy is no easy task! Wishing you a successful surgery and quick recovery.

    JCSLibrarian, keeping fingers crossed for PET scan and good news.

    Kber, you’re not kidding about the 2 days of being knocked out. I still feel groggy and a bit out of it. Guess it will be like this with each Taxol treatment? I agree with the idea of psychological counseling. Can’t hurt to talk to someone about everything we’re going through. Keep us posted on your Taxol treatments so that I know what to expect.

    Mary, I too am experiencing my (left) eye twitching. I didn’t have this side effect with AC. Wonder why Taxol does this to us.

    Becky, hope you’ve been able to feel better now as the chemo wears away. Congrats on also finishing chemotherapy! Keep us posted on how you are doing.

    Neetu, we are on a similar timeline. I started AC treatments on Christmas Eve! Completely missed out on Christmas altogether. Slept 3 days straight through. Feels like such a long time ago already. I’ve just started 1st treatment of Taxol on 19 February. 11 more to go?!!

    Lillian, congratulations on finishing CT chemotherapy! Rads will definitely feel easier than chemo. Fatigue was my only complaint. Even though treatments are daily, they do go by so quickly! Wishing you also a speedy recovery.

    Hope everyone is doing ok. It’s exhausting going through this journey, but knowing that we are here for one another makes it just a little bit easier.

    Wishing you all a nice and relaxing weekend.

    xx

  • kber
    kber Member Posts: 243

    ok. What coping mechanisms do you use to magage the steroid kick? I talked them into cutting the dose a bit but I’m still totally wired and I’ll crash hard later.

    Other than that, today’s chemo session was uneventful and problem free. Expecting to sleep a good part of the next two days and will hopefully rebound by Monday as I did the last 3 weeks with Taxol / Carbo.

  • AngieInAmsterdam
    AngieInAmsterdam Member Posts: 120

    Finding that Taxol SE more noticeable than AC SE. During AC, was mostly nausea, some bone pain, headaches and fatigue.

    But with Taxol, experiencing all types of SE, such as, lack of appetite, headaches, body aches, muscle and bone pain, burning/ teary eyes, stomach cramps, flu like symptoms, night chills, hot flashes, and fatigue. Just to name a few.

    If I can describe what it feels like, I would say my body feels as though I am an MMA ultimate fighter (not that I would know, just assuming) getting beat up and needing a lot of rest to recover.

    And this was just my 1st Taxol treatment. Hoping it will get better with following treatments. But I have a feeling this will be my standard side effects for this regimen.

    Anyone else experiencing similar side effects on Taxol? Any advice on how to counter these SE? Will SE stay pretty much the same or worsen as chemo accumulates?

    Thanks in advance

  • mcbaker
    mcbaker Member Posts: 1,856

    It seemed to get better for me. Even though the accumulation in my body increases, my body gets used to it. I am on 10th cycle.

  • AngieInAmsterdam
    AngieInAmsterdam Member Posts: 120

    Thanks Mary.

    Very encouraging to hear that my body may get used to Taxol and learn to adjust to it.

    2 more rounds to go! You’ve got this!! 💪🏼💪🏼

    xx


  • nanette7fl
    nanette7fl Member Posts: 412

    Hi Angie so sorry you're feeling so badly with your 1st treatment. Hopefully in time things will calm down. With me it was more gradual... the creeping in of the SE's..week to week I felt "duller" & "dimmer".... not really me but like I'd been in a car wreck ....

    But I can tell you that now that I'm 5 days out from that final taxol other than feeling really bloated ALL over (assuming it's still the steroid) I "see" how badly I was feeling these past 3 months! I almost feel human again and feel my energy level going up.

    I said all that to say what you wrote described how I felt but couldn't quite put my finger on.....

    Sending (((hugs))) to you my dear and hope you'll be feeling a little better soon.... even if only for a few days between treatments

    ~Nanette

  • kber
    kber Member Posts: 243

    I find the immediate Taxol / Carbo SE's to be more intense, but shorter lasting.  The best I can compare the SEs to is an intense detox or recovering from food poisoning, minus the throwing up part.  It's not just that I'm tired the two days after chemo.  It literally feels like I've been poisoned and my body is doing everything it can to expel the poison.  Night sweats, weakness, the shakes, water cravings (not thirsty - literally craving water), little to no appetite (but no nausea, so that good!) and yes, exhaustion.  Then day three rolls around and I make this miraculous recovery.  By Monday morning, I wake up more or less fine.  The sudden transition from "can't be out of bed for more than 30 minutes" to "hey - ready to get dressed and go to work!"  is really weird.

    Mind you, I need to strip the sheets and blankets from the bed because they're soaked and gross.  And I've literally lost the whole weekend recovering.  But my good days are better than they were on A/C by a long shot.  I can work (productively, even!) socialize, focus, read, and enjoy life in a way I couldn't manage on A/C.  I guess the chemo gods giveth and the chemo gods taketh away.

    Only 8 left - that's my mantra.  I can get through 8 more of these.  

  • kber
    kber Member Posts: 243

    Just got off the phone with my Oncologist.  I had lobbied to reduce the steroids given with my Taxol / Carbo treatment because I hadn't had any type of reaction or nausea and I hate the way they make me feel.  He agreed to try last time and wouldn't you know, I had an allergic reaction - rash, redness, chills and a fever of about 101 for a few hours.  Darn.

    So I'll be back on full steroid dose this week and we may try reducing it, but not by as much, after that.  Or maybe I just suck it up so I can finish my course of treatment and get the hell on with my life.

    8 more.  

  • BeckyJL
    BeckyJL Member Posts: 81

    Oh, Kber, that sucks.

    Angie, Nannette, MC, sorry it also sucks. I can't add to that discussion because I'm not doing that treatment, but you all have my sympathy. I know you can do it, but I wish it were easier on you all.

    I'm a little over two weeks from last chemo. Seemed to have plateaued this week with no change for the better yet really. Still rather tired - though I'm wondering if the depressing weather isn't playing a role in that. Won't walk the dog when the temp is below 20 and windchills are single digits or negatives! Taste hasn't yet returned much and I'm still dealing with fingernail/toenail pain. The constantly watering eyes are really annoying and interfere with a lot.

    I have to remind myself it's ONLY been 2 weeks. I leave for Florida for a few days on Thursday. Hoping the change of scenery and weather will amp up the decreasing of SEs! I bought a couple of summer weight hats for the trip. One of them I can't figure out how to wear properly, lol.

    I start radiation a few days after I get back. Only four weeks of that (20 sessions).

    What a journey we are all on, but I'm thankful for this board and for all of you who are helping me, and each other through it.



  • anx789
    anx789 Member Posts: 241

    Kber, thanks for your post. Me too was considering lowering my steroid but after reading your post, I decided not to. Today is my 5/6 TC. I’m a little anxious because not sure if made the right call of getting TCx6 instead of TCx4.

    Becky, I feel the same way after # 4, watery eyes; and feeling tired/lazy/low energy/fatigue didn’t really get better, I’m hoping it will not get worst after today. The weather maybe was a factor, im not use on this weather change, (too much rain and very cold) Have a good time in Florida and Good luck on your radiation!

    McBaker, Nanette, & Angie, hang in there!

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