Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Weigh in: What are the best and worst gifts for people with breast cancer?
Share with us: What are your proudest moments of 2024 and personal goals for 2025?
Take our poll: How are you feeling as we near the New Year?

Starting Chemo in November 2017

1…3738404243…64

Comments

  • Hope99
    Hope99 Member Posts: 120
    edited January 2018

    Nice replies dears. thanks for sharing experiences.

    Nonahope - I am sorry about that. I heard my onco when he said the Stage VI is not same. if you are in the beginning I think they can help you to kill that tumor that spread away. what is your stage and your receptors state when you diagnosed in 2008? ( I think that date, always i read you here).

    Mkn86 - hope you and all of us will be survive soon .

    Tine - Ooh yes, I like this kind of history. hope nonahope can beat the beast .

    Blair - you are right! Someone wrote here, I do not remember who, its better to be in stage 2 better than 1 due to aggressive treatment. the recurrence in stage 1 more than 2 with lymph nodes based on that replayed. Chemo, Surgery, radiation are important to kill escaped cells that not shows on the test. A lot of people diagnosed with stage 0, DCIS and 1 ( they not took chemo) and faced recurrence within 4-8 years! I hope we will take a full benefits of 2018 and avoid the recurrences + complete treatment . Did you hear someone faced cancer spread during chemo ? this story make me fear if its true :(

    Ekra .

  • nonahope
    nonahope Member Posts: 695
    edited January 2018

    Iris...Glad the swelling has gone on its merry way....that's a good sign!

    Hope99...I was diagnosed in 2010. I don't remember what stage...I think it was Stage 1 or 2. I had a lumpectomy and sentinel node biopsy....4 rounds of chemo (one every three weeks), then 32 days of radiation. I am now at Stage 4...with metastatic breast cancer in my bones (rib area) and in my bone marrow. There is no "cure" for my stage. Don't get discouraged by the recurrence of others.

    Have a great week!

    Hope

  • Blair2
    Blair2 Member Posts: 353
    edited January 2018

    Hi ladies,

    My x-ray results came back as normal bone wise. No damage to spine, just normal wear and tear due to old age. (Arthritis & osteoporosis). So my back pain is definitely muscle spasms and inflammation. Nobody is going to convince me that it isn’t the chemo drugs causing this. I did find an article that taxotere causes muscle pain, so I guess for me it had to settle in my back. This is Day 4 on the two drugs my primary gave me, and I still suffer some pain as I move. So, so tired of this.

    My urinalysis was ok too, so that means my kidneys are ok. I’m glad he ruled that out.

    I called my OM nurse and told her about the results. My question to her was whether I should be taking these drugs by this Friday for my last chemo. Would it interfere with the steroids? Her answer was no, keep taking them. My surprise was that she said the steroids were for my bad flu feeling that makes me so weak. That made me feel better - as long as they work! If they could perk me up - yes, I could do this!(I thought they were for my back pain).

    My only concern is - what are these chemo drugs doing to my back muscles? Will this be permanent? I’m really scared since it’s not a common side effect. Nobody in medical field seems to know. That’s scary in itself!

    The other thing the nurse said after I told her I was very nervous about this last treatment was, - you could quit if you wanted to, it’s ok with the doctor. (Well, yeah, why would she care what I do?) I said, well, it might hurt my recurrence percentage and you all can’t give me any idea what might happen. (I didn’t say it sarcastically) then there was complete silence from her. Oh well, I’m still numb about it. Three days to make up my mind.

  • 19501952
    19501952 Member Posts: 80
    edited January 2018

    hi everybody,

    Has anyone had abnormal liver enzymes? My ALT/SGPT IS 70 and I got a call to come in for blood work tomorrow. Two weeks ago it was 32.

    Constipation seems to be my constant companion. Oncology nurse told me to take 8 senakot about 30 minutes ago. So far nothing.

    All these meds to counteract each other is driving me crazy. Kate

  • nonahope
    nonahope Member Posts: 695
    edited January 2018

    Blair....I'm glad your x-rays were negative. My plain film x-rays were also normal...nothing showed until I had a CT/with contrast. You're off to a good start. If the pain persists, I would insist on further work-up. I do hope you feel well enough for your last treatment. Just think of it as the "LAST" one....and you're finished!! Those steroids should definitely perk you up.

    1950-1952....I did indeed have very elevated liver enzymes. My numbers were 100-200. My doctor ordered a liver ultrasound. It was normal. The elevated enzymes was due to my Taxol infusions. They still are above normal, but in the 40-50 range. It scared me to death, but all was okay.
    I don't have constipation issues any more. But, when I did, I took Dulcolax on a daily basis for awhile. Good luck...I hate that feeling of constipation.

    Hope

  • 19501952
    19501952 Member Posts: 80
    edited January 2018

    Thanks Hope, your experience is reassuring. I think every time something is a little out of whack it turns into a battle between thinking, oh, no problem. It will be fine. And, Omg it's got to mean something awful. I wonder if any of us will return to a more carefree state of mind. Kate

  • klvans
    klvans Member Posts: 199
    edited January 2018

    19501952 Kate, I've also had elevated liver enzymes on several occasions. I had an abdominal ultra sound as standard procedure before starting chemo. After the elevated liver enzymes presented the Dr. ordered another scan. I was extremely nervous, my brain went in a lot of different directions, but the results were normal. My biggest fear is that I'll have weird blood test results and they'll want to delay my treatment. I so want to stay on schedule and be done. I've been very careful with my diet and I think that has helped my blood work. I find the anti nausea pills really made me constipated so I just take a tums if I need something. Like Hope I hate that constipated feeling. Fruit has been my best friend. I've been pretty lucky with side effects. I feel fine until the neulasta shot, then within 24 hrs of that I'm miserable for several days. By day 5 or 6 I've perked up again. By day 7 when I go to my appointment I feel pretty normal. I sure hate the lousy feeling the first 5 days though. I've also been walking everyday and that's helped as well.

    Blair, the steroids should help with your back and tiredness. Everyone reacts differently but steroids just wire the heck out of me. They almost give me too much energy. I hope they work for you. I think they'll help. I agree that your muscle pain is the result of chemo. You could also have twisted a muscle in your fall. I doubt that it will be permanent. I agree with Hope; get it checked out more if it doesn't go away.

  • 19501952
    19501952 Member Posts: 80
    edited January 2018

    Thanks Klvans, I get the most reassurance from all of you that are going through this. You know when I first got diagnosed the surgeon, oncologist and radiologist were so positive I'd sail right through this. After the first lumpectomy I didn't have clear margins and had to have a rexcision that produced clear results. All my doctors thought I'd have radiation then be fine. When my oncotype score turned out to be 26 they were all surprised. I wish they had been less positive from the beginning. Then setbacks and test results might be easier to take. Now I want to say, really, you're sure about that? So I'll try not to worry but that whole trust thing has been eroded. Kate


















    Core


  • 19501952
    19501952 Member Posts: 80
    edited January 2018

    Thanks Klvans, I get the most reassurance from all of you that are going through this. You know when I first got diagnosed the surgeon, oncologist and radiologist were so positive I’d sail right through this. After the first lumpectomy I didn’t have clear margins and had to have a rexcision that produced clear results. All my doctors thought I’d have radiation then be fine. When my oncotype score turned out to be 26 they were all surprised. I wish they had been less positive from the beginning. Then setbacks and test results might be easier to take. Now I want to say, really, you’re sure about that? So I’ll try not to worry but that whole trust thing has been eroded. Kate


















    Core


  • mkn86
    mkn86 Member Posts: 129
    edited January 2018

    Thank you Hope99. i think we’ll make it. just take it one day at a time.

    hey Kate, hang in there... I completely understand the desire to be able to go back to a carefree state... one where we still felt at least a little invincible. you’re also right, sometimes, it’s better to be realistic than to be overly optimistic about things. sending you hugs.

    blair i’m glad they finally got more tests for you and that hopefully it helps you decide whether to go for dose 4 or not. whatever you decide, we support you. we are here.

  • klvans
    klvans Member Posts: 199
    edited January 2018

    Kate, it sounds like your MO is on top of things. It seems like the proto call for chemo and various cancers is pretty well established. To me what makes a good MO is someone who stays on top of side effects and who watches carefully for signs of recurrence. It's reflects well on your MO's competence that he or she ordered an ultrasound.

    I've known others who didn't get clear margins first time around. I think many surgeons try to conserve as much of the breast as possible so they take the smallest margin possible. If you've got them now that's what counts.

    I know what you mean about the optimism. I thought I'd just have surgery and radiation. I so didn't want to do chemo. Having the liver scan was the low emotional point of chemo for me. It just scared me. I've done well with the physical part of chemo but emotionally the whole having cancer thing is hard. I looked in the mirror the other day and saw bad skin, hardly any hair, tired eyes; just a really ugly version of myself, and I cried. It wasn't all about vanity. It was more about self identity and looking like a cancer patient. Thankfully my optimism re emerged. None of us knows how many days/months/years we have left--we could get hit by a bus tomorrow--so I want to enjoy life as much as possible. In the end I washed my face, said f*** it, slammed a hat on my head and went over to a friend's house. I think when optimism leads to resilience it can help us.

  • Blair2
    Blair2 Member Posts: 353
    edited January 2018

    Thanks girls for your replies.

    I too find myself constantly worrying over the fact chemo causes side effects to our blood, muscles, organs and bones in such individual ways. Again, the lack of research on these effects make it a total scare for all of us. In the case of my back - I ask - what is it doing to my muscles to lock them up so bad? Is it permanently damaging anything? I think in ways we are just guinea pigs!

    I’m trying to clean a little to prepare for next week. So pushing myself to move. I feel I got to get through this last treatment, and I hope the steroids give me more strength to get through the awful flu days. As far as my back pain, it’s still there, but I can now sleep on my sides and back without the backstabbing pain attacks. The muscles still twitch sometimes, but the pills have dulled it a bit. The chemo drugs are winning this battle of torture I’m afraid! Taking my cleaning very slow, in fact, I’m icing my back now. My primary said to stretch the muscles some, so I have been doing different positions. (Very slowly) Can’t tell if it helps, but being sedentary isn’t good either.

    Magari - let me know how your last treatment is going. Let us know if it’s worse, or the same compared to the other treatments. I hope you will be just fine

  • Mom4gma3
    Mom4gma3 Member Posts: 123
    edited January 2018

    Infusion #4 today, hoping I slide right through as I have been. Took my steroids last night and praying the fluid starts dropping off, even though it only lasts 2 weeks and it comes right back. I will find out today if we are only doing 4 instead of 6. Praying for only 4 so I can start the radiation and start putting all this behind me, even though I still have to do the herceptin for a year. I keep forgetting that part. I too wonder what side effects may become a permanent fixture in our lives. I’ve seen stories where people are dealing with fluid retention for a year after, hair loss, bone pain. We will never know I guess until we know.

    Good luck to all of us hitting our next infusion this week.

    Tina

  • Blair2
    Blair2 Member Posts: 353
    edited January 2018

    I hope you only need 4 infusions today Tina! With your low clinical facts, is it because you’re ER- and PR- as opposed to being positive that they are considering 6? My tumor was bigger than yours and here they are telling me I could quit, but not sure if I should. It could be the age difference too, but I don’t understand what makes us all get different cocktails and treatments. Makes you wonder if we are being over treated or under treated

  • Blair2
    Blair2 Member Posts: 353
    edited January 2018

    Oh - it's the Her2 + I bet. Missed that, because that does take a little more aggressive treatment. Still waking up here!

  • Mom4gma3
    Mom4gma3 Member Posts: 123
    edited January 2018

    yeah it’s the her2+ and the ki-67 of >70% plus a grade 3 for aggressive. I don’t get the onco score I get the other numbers instead. It tripled in growth in 4 weeks so they were starting out fairly aggressive against it.

  • klvans
    klvans Member Posts: 199
    edited January 2018

    Tina, good luck on infusion #4. I hope it goes well. My #4 is this Sunday. I'm with you on hoping side effects go away and soon. I think the odds are in our favor that they will. Take care of yourself.

  • magari
    magari Member Posts: 335
    edited January 2018

    Hi, all - Thanks for the updates, and best to those who are in for infusions this week.

    CONGRATS, MamaFelice on being *done*!!!

    I had Round 4 (of 6) on Monday and am still feeling fairly decent this morning. A little low energy and woozy, but the meds are doing their jobs. My labs came back pretty normal with the exception of low potassium, so I am eating bananas, kiwis and oranges. I anticipate the flu-ishness will hit later today or tomorrow, but it never really did last time so perhaps I'll be lucky again.

    Went to see my breast/plastic surgeon before my Neulasta shot yesterday and she was very happy with my results. Even though I still have swelling and fluid under the skin from the Alloderm, she confirmed that there was no seroma and thought my scars were healing well. She gave me the oaky do do some gentle massage to help shift my left implant into it's pocket a little better (we were previously holding off on that due to my port surgery.) And was going to call my physical therapist to let her know that she can also begin massage to break up any cording, etc.

    I took advantage of being up and out of the house for my shot and went to Trader Joe's and Target before heading home again, so the house is well stocked. A friend dropped off lemony chicken soup for me yesterday afternoon, which was very sweet of her. That will no doubt be my lunch.

  • rljes
    rljes Member Posts: 499
    edited January 2018

    Hi Everyone - Chemo #4 Day 2
      The usual wobbly footing, Bloating, Migraine. and just plain wiped out feeling Day 2. Even my beloved steroids not helping. 
      Started with Bloodwork, then see the MO - told him about my Severe hip pain, and without discussion, asked me if i wanted TO STOP CHEMO TREATMENT.  Didn't have my pharmacutcul MO with me to translate as usual.  Asked him if it had to do with chemo and he said he didn't think so - when why stop Chemo?  He thought it might be "Femoral Hip Necrosis" AKA "Osteonescrosis" = Interrupted blood flow to bone"  I told my Pharm MO and she said that was unlikely - more likely sciatic nerve.  Hope so, then my chiro can help.  But MO wants a MRI to rule out. Went ahead with chemo treatment #4 without issues.  Seems to be getting shorted - tolerating well enough to speed up dosage I guess. Just kicks butt afterwards.  
       I'll catch up with all your posts after a nice long nap.  
    Take care. 

  • Mom4gma3
    Mom4gma3 Member Posts: 123
    edited January 2018

    well all done with infusion 4 she didn’t stop me so it looks like I’m going to 6 but she did cut the Taxotere by 20% and she reduced the carbo hoping it cuts back on the edema. Nothing out of the ordinary right now but the weak muscles which is just par for the course. Regardless I still took the stairs out of the hospital and into the parking garage, even though it was an effort going up two flights. Back to work tomorrow and Saturday, but it’s a light schedule. Looking forward to loosing all this fluid in the next week even though I know it’s going to come back.

    Tin

  • mkn86
    mkn86 Member Posts: 129
    edited January 2018

    klvans, i completely get you. the physical side effects are manageable. but mentally it's rough. even i struggle to keep myself busy mentally (more like DISTRACTED) and it's hard to do too when meds limit us physically during fatigue days or the steroids mess with our thoughts as it leaves the body... just... much respect for people who rarely go into a downward spiral and are able to be resilient shortly after a bad day/week.

    tina, good job with finishing infusion 4!!! :)

    rljes and magari it's good to hear from you afyer your latest infusions. good days are just around the corner for this cycle.

    nonahope, we have the same infusion day so i will be thinking of you. :)

    mamafelice, i read in an earlier post that you're about to have your last dose. if i haven't congratulated you in any of these threads, congratulations! 🎉🎉cause for celebration! :)

    blair still keeping fingers crossed for you and a resolution to your back problems.

    my bloodwork was good yesterday. normal levels and i actually got grumpy when my brother kept asking where i was going. because it was a good day and i wanted to be out and about and have sunshine and see the super moon from outside (instead of streaming it ... what good is that? It's like watching your screensaver move if i did that). they're protective and they do it based on side effects they understand (sometimes fixate on)... losing taste buds and appetite and fatigue. and even if it's 2018, my brothers of course are speechless when i try to reach out and talk about other side effects and treatment steps that are limited to the female body (chemopause, hot flashes, cramps, mastectomy, oophorectomy, etc) my mother ironically reacts the same as my brothers heheh. they are struggling and i see all of them trying to overcome the struggle to support me and i love them for that. And on difficult days i am just thankful for friends and this forum for additional support.

    it's damn difficult sometimes. being a patient is tiring and resting is also tiring (does that make sense?) and sometimes having cancer makes me feel like it has turned me into a whiney person. Some days i think defiance gets me through instead of optimism. Hahaha I think about wanting to go back to my life before diagnosis already. and some days i wonder how exactly i will go back to it. (One day at a time)

    I digress. sorry. the point is good bloodwork and it's my last taxol infusion today. hopefully no allergic reactions. I'm nervous about surgery but wanting to go to the next step for treatment and i will check in after infusion. enjoy the weekend! :

  • klvans
    klvans Member Posts: 199
    edited February 2018

    Tina, taking the stairs after infusion; you are a tough one! I'm glad your infusion went well. Perhaps cutting the dosage will help with the swelling. I hope it does.

    Magari it sounds like your infusion went well and that your breast surgery is healing right on schedule. It seems like you're one of those people who bounce back pretty fast. The mention of lemony chicken soup made me hungry...that's a good friend....

    rljes it sounds like a good rest is what you needed. I hope you feel better soon.

    Blair may your back feel better soon.

    kat good blood work and your last taxol infusion! I hope the infusion went well. I know you're anxious about surgery.

    Take care everyone.

  • rljes
    rljes Member Posts: 499
    edited February 2018

    Chemo #4 / Day 3

    This may sound strange - but I was kinda relieved when I got cancer.  Cancer is something you can see. I was dx with Auto Immune disease back in 2012 and was forced to go on disability (before Cancer Dx) . Its one of those diseases that 'you look fine' and everyone thinks you should be working and going out, when in reality I could barely walk or move. So I was feeling so guilty, especially on those days I could hurt so bad I had to use the Disability parking spot - (which I hardly ever used) I was always afraid I would get a nasty note on my car.   I know, its strange.  I'm depressed, but not feeling guilty anymore. 
      My MO called today, after labs on Tuesday's Chemo #4 said I'm low on Iron and Potassium. hopefully after I pick up my Rx (God give me the strength to get up and out) I'll have a tad more energy and my leg cramps will ease up.  Still waiting on MRI appointment for Hip. 

    Tina, where is your edema?  We have the same regiment, what do you think is causing this? My treatment flew by on Tuesday, they cut the time by an hour - so I guess they are speeding things up.  Usually 7 hours - now 6 hours. 

    mkn86 - did you get to see the Super Blue-Red moon the other day?  I didn't make it, but I did get a thrill last month when the Space Station flew by.  

    Everyone take care - rj

    Den furniture came - I have to remind myself i have all the time in the world to fix it up.,,

    image

  • Mom4gma3
    Mom4gma3 Member Posts: 123
    edited February 2018

    rljes-the edema is mainly in my legs and ankles. Some in my clavicle area and my face. She said the Taxotere causes it. The lasix helps some but not very well.

    Today was pretty rough, mostly hip and thigh pain, almost fell in the garage when I got home from work. Luckily I am off tomorrow, I was able to drop my car off finally and get it fixed, so happy for that. They said it should be done tomorrow late morning. Then I have to take it back sometime next month for them to replace a recalled part. So besides that I’m not going to be doing much tomorrow but resting. I have a feeling this round is going to hit me a little harder than the past 3 but we shall see.

    Strength and good vibes to everyone!

    Tina.

  • nonahope
    nonahope Member Posts: 695
    edited February 2018

    Kat...Hope your infusion went well yesterday. I was thinking about you!! Mine went fine. I didn't sleep well last night, but that's the norm the day after...from the steroids. It only lasts for one night.

    Tina...sorry you have to continue with the Taxol...hope the decreased dose helps with the edema.

    rljes...Wow...you were dealt a double wammy! You will have such fun with your new furniture...looks nice!

    Wishing everyone a great weekend, with little side effects from treatments.

    Hope

  • klvans
    klvans Member Posts: 199
    edited February 2018

    Tina, I hope the rest helps with your edema. Taxotere is a rough drug and working through all of this must be hard too. Take care of yourself.

    Rljes I think we react to having cancer in complex and individual ways. It must have been frustrating to have a serious disease and feel bad and have no one recognize it. Cancer is different that way. I'm the opposite; I dislike people being able to look at me and tell I have it. We are all so unique. I'm sorry you have to deal with two illnesses. It can't be easy. New furniture! I'm jealous!

    Kat I hope you have minimal affects from your infusion.

    Nonahope so glad your infusion went well. Sounds like a good night's sleep is on the agenda. Stay well.

    Infusion 4 for me on Sunday if blood work is ok. I have the usual anticipation and dread.

    TGIF everyone.

  • mkn86
    mkn86 Member Posts: 129
    edited February 2018

    rljes, den furniture is lovely! :)

    i saw the blood moon last wednesday night and i said a short prayer of healing to the man in the moon and the owner of the sky :) i took a photo and it looked like a red dot from where i was standing (and i'm only 5 feet tall so... that's an extra challenge)

    image

    But the rest of the internet got better photos and these two are my favorites and i'm including their Instagram usernames to credit who posted the photos. :)

    This one is taken from one of the islands in the philippines:

    image

    And this one i don't know the context of the photo but i love it:

    image

  • mkn86
    mkn86 Member Posts: 129
    edited February 2018

    nonahope i’m glad your infusion went well :) you were also in my thoughts during infusion.

    klvans, thank you infusion went well :) i am currently startihg to get my usual bone and muscle pain.

    BUT... i have even better news because i can now officially declare that i have finished my AC + TC chemo. 15 infusions in total. 🎉🎉🎉

    There is no bell in the hospital haha.

    On to surgery scheduled for the first weekend of March. :)


  • Meowmmy65
    Meowmmy65 Member Posts: 125
    edited February 2018

    Congratulations to all who are finishing up their chemo! Before you know it, we will all be done, and ready for the next thing.

  • Meowmmy65
    Meowmmy65 Member Posts: 125
    edited February 2018

    Congratulations to all who are finishing up their chemo! Before you know it, we will all be done, and ready for the next thing.

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.