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Starting chemo January 2018

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Comments

  • krose53
    krose53 Member Posts: 74
    edited March 2018

    Hi SaraSC, I’ve been having vision problems as welll. I’m also on Taxotere. I kept feeling like my vision was blurry. Wearing my glasses also seemed to make it worse. I’ve been unable to read anything much longer than a magazine article. Haven’t worn my contacts in weeks. Also headaches which I’m prone to. Hoping it gets better after treatment. I have one round left of TC. Hope you feel better soon.

  • okkate75
    okkate75 Member Posts: 75
    edited March 2018

    Oh, SarahSC, I feel you! I get the blurry vision and twitchy eyelids, and it's scary. I have real trouble seeing, but it does even out after a week or so. I'm just trying to gut through this stuff--the GI stuff, the muscle twitches, the weepiness, the neuropathy, the mouth yuckiness...all of it. I can see the end of the tunnel, though, and it's there. I hope things look up for you, and that this is temporary. I keep telling myself that--this is temporary. Sigh.

  • Roxy13
    Roxy13 Member Posts: 116
    edited March 2018

    I also got twitchy eyes, SarahSC. No blurry vision, but it’s extremely unpleasant nonetheless, not to mention freakish. The MO assured me it will go away after chemo, and I believe him, since the twitchiness seems to subside as time passes.

    @Okkate75 - congratulations!!!! Whatever the side effects, I’m sure you feel a little better knowing it was the last infusion. Things are only going to get better now. Did you take a picture ringing that bell? I have my last infusion on Thursday March 15th and I fully intend to give that bell a good ring :)

    @Insideout - good luck on Monday!

    @Olesya - hope you enjoyed Season 6 :)

    Hope everybody is doing well and that spring is coming wherever you are! I’ve been ok, just really, really tired. I used to bounced back a week or so after the infusion, but I’m not 100% now, 17 days after TC#3. I have half my eyelashes and eyebrows left, so I shouldn’t complain, I guess. I’ll probably lose the rest in the next couple of weeks.

    Take great care of yourselves, ladies!

  • okkate75
    okkate75 Member Posts: 75
    edited March 2018

    @Roxy13--No bell where I go! There's a good bell in the radiation room, so check me in May, ringing the heck out of that thing! And I concur--the fatigue has really built, just like they said it would. I bounce back, but I'm tired at the end of the bounce, unlike the first round. But this time, as I bounce forward, I'm going to keep bouncing. That's the plan, anyway!

    Enjoy the weekend, folks!


  • Shlomit
    Shlomit Member Posts: 68
    edited March 2018

    No bells at my chemo center, either. I asked and they gently explained that with the variety of patients they have there, there are those who are receiving treatment, but are at various late stages of cancer or other blood disorders (it's an Oncology and Hematology practice). They thought the bell ringing might send them messages and signals that, well, those of us blessed with better prognoses then what they have. I could totally understand. I'll find another way to celebrate after March 30.

  • Roxy13
    Roxy13 Member Posts: 116
    edited March 2018

    Makes sense. I didn’t think of this. Illness is very selfish...

    I thought end of chemo was just that - celebrate the end of chemo. For now, anyway. Who knows what’s in store for us.My prognosis is good, but I’ve gotten accustomed to being the bottom 10% who got a call back after the mammogram, then the biopsy, then the diagnosis... So I don’t take anything for granted and I’ll celebrate every little step. I know I’m genuinely happy for those that have completed this part of the process....


  • princessbuttercup
    princessbuttercup Member Posts: 161
    edited March 2018

    Anyone else have a worse experience the second time around with Neulasta?

  • paisley2916
    paisley2916 Member Posts: 55
    edited March 2018

    Princess - I didn't have too much trouble with Neulasta, but I did notice that my 4th one caused achy muscles much worse than the previous 3. Are you taking Claritin for it? I always took it the day before, the day of, and the day after the shot. I think this really helped me. Hang in there

  • insideout2
    insideout2 Member Posts: 108
    edited March 2018

    Roxy13 and Okkate75- thanks for the post regarding the eyes. I noticed my vision has changed and my eyes water quickly. I never tied it to chemo. I was focusing on other SE, but this makes since.

    Our family outing for this round was Top Golf. It was hot I Houston Tx in the morning, cool that afternoon. We modified our plans and played pool on the inside and watched others. We had a good time.

    I had stitches that were sticking out from my port placement removed last week. No drainage, but the site of the incision now itches and is sore. I don't cover the incision anymore, so I think it's the fabric softener I use now agitating it. I still get twinges of pain if I lay wrong with the port. Are any of you keeping the port once done?


  • paisley2916
    paisley2916 Member Posts: 55
    edited March 2018

    Hello Ladies! I'm excited to be going to my Look Good, Feel Better class today! I scheduled this 2 months ago and can't believe I've gone through two months of chemo (AC) already!!! I was dose-dense AC and now I'm on a 3 week break before I start my 12 weekly Taxol treatments. This extra week is HEAVEN! The last AC treatment took me a lot longer to recover from - longer than the others. Yesterday - my energy levels were really good and I just kept telling my husband throughout the day - "I just feel so good! I can't believe how good I feel!' I wouldn't say I'm feeling back to normal, by any means, but wow - what a little bit of extra energy can do! I still have the rest of this week and beginning of next before I go back to start Taxol. Boy, is it going to be hard to go back! I've decided that this will be my "fun week". Going to Look Good, Feel better today, Movie and shopping on Wednesday with my Mom, and Friday - we're taking the kids out of school, my husband is taking off work, and we are going to have a "Family Fun Day".

    I met with my breast surgeon last Thursday. He did a quickie ultrasound to check to see if things are shrinking. The small mass in my right breast can no longer be seen!!!!! The large mass in my left breast has gotten smaller!!!!! He said they will do bilateral mammo's and US after Taxol to check again before I have my surgery. For the first time in 2 months, I'm feeling quite positive about all of this. It's nice to know that the chemo is working and it makes all of the bad worth it.

    Have any of you ladies had a bilateral mammo with reconstruction? I'm going to have to start looking into this - there are so many options. I'll be meeting with a plastic surgeon on March 26th. I'm nervous about the pain that will come with the surgery!

    Well, hope you all have a great week! As my husband's aunt keeps telling me: "Just keep moving forward...."

  • Roxy13
    Roxy13 Member Posts: 116
    edited March 2018

    That’s great news, Paisley!

    I had bilateral mastectomy with immediate reconstruction. Saline implants. It wasn’t so bad. A little pain in the first 48 hours, but manageable with the painkillers. The new breasts look nice. Best of luck going forward

  • paisley2916
    paisley2916 Member Posts: 55
    edited March 2018

    Roxy13 - I may be doing the exact same thing - bilateral with immediate reconstruction with saline implants.

    It's frustrating right now, because my BS says I don't need radiation and can do immediate reconstruction. But, my MO says I may need radiation unless everything shrinks enough from chemo.....

    How was it getting used to the implants? Are they comfortable? Do they move under the skin? How long was your hospital stay? How long was your recovery? Any thing I should be looking into, or anything I should ask the plastic surgeon specifically?

    Thanks so much for any info!!!!

  • DxAt37
    DxAt37 Member Posts: 32
    edited March 2018

    Hello, Has any of you premenstrual Ladies been plagued by stubborn period? I just had round 4 of Adria last week (last one and still 4 Taxols to go) and it seems like I can't catch a break.

    If not for GI issues, then it's period, if not period then extensive blood clot that formed in my arm where the port was ( of course port had to go), and now it's period again. My MO told me periods do tend to stop during chemo but I am guessing my body didn't get the memo! That of course makes me hormonal and whiny and I dont like it.

    Anyways, I am less than happy to deal with all the chemo SE and period "pleasantries" and wanted to vent.

    I hope you have better times and are not too bothered by SE.

    My last day of chemo is May 2nd and I am really looking forward to that date!

  • Amelia01
    Amelia01 Member Posts: 178
    edited March 2018

    Dxat37 - I've been on shots to stop my cycle. Then again, I'm 10 years older than you -- but was still premenopausal. They shut down the factory on me - for good.

    Anyone else but me and Paisley going on to the weekly Taxols? I took a read through their thread and seems that SE are far worse than AC! And here I was somehow thinking the worst was past me.

    For those who mentioned vision changes, I was told that the Lupron (or estrogen suppressors) can also make changes in vision. Happy happy joy joy I can't see squat now and I just had new glasses done prior to chemo so I could hide my eyebrows.

    Insideout - I'm ripping my port out as soon as I can. I hate it. It took over two months to have it not be constantly bothering me. It is believed it was attached to a little nerve. Guess something I did must have ripped it free. I can finally sleep on that side now.

    I'm slipping into depression. I don't go out of the house and I look like such crap that I don't want to be seen by anyone. Having a cough for three weeks isn't helping me get a good nights rest or feel like doing anything. Maybe if spring came I could venture out.....

  • Roxy13
    Roxy13 Member Posts: 116
    edited March 2018

    Hi Paisley, I took a chance with the implants, because I didn’t know at the time whether I would need radiation. I don’t know how the BS can opine on that before the surgery. They (the BS and the plastic surgeon) told me that even if I do need it, there has been so much progress in radiation therapy that it should not interfere with the implants. It’s really targeted. I had an MRI and ultrasounds before the surgery, which showed the nodes were clear, but they don’t know for sure until they get the pathology report. I don’t know if I would recommend to do the same. In retrospect, I was a bit stupid, and vain for wanting breasts right awa. It was really important for my mental health to, as my PS said “go to bed with breasts, wake up with breasts”. Definitely something to talk to your BS about.

    The breasts themselves look nice. I wouldn’t say they look natural without a bra, but they look natural with a bikini top. Not like porn star breasts or anything (I’m 34C now, so there is that :)) They don’t feel natural though, but they are not uncomfortable by all means. They seem to have their own temperature (cool) when my body is warm. I guess it’s the silicone :)

    The surgery itself was not too bad. They sent me home the same day, but I think it’s a Canadian thing. In the US they stay overnight, which is probably better. The pain was manageable WITH the pain killers. Take them as you need them. I didn’t shy away from the opioid they gave me. I had a few left at the end, and flushed them down the toilet, so I didn’t develop any new addictions. You can read about my (and others) trials and tribulation in mx world in the November 2017 surgery group.

    Best of luck! And let us know what you decide. Feel free to pm me if you have additional questions along the way.

  • Roxy13
    Roxy13 Member Posts: 116
    edited March 2018

    DXat37 - I had my period during the first TC, then it stopped. I’m 47, but was premenopausal. I was told by the MO it’s a good thing that the ovaries have stopped working. I don’t know if the chemo triggered menopause. I didn’t get any other symptoms. It may be different for you since you are so much younger.

  • erob321
    erob321 Member Posts: 59
    edited March 2018

    dxat37- I am still getting my period, but it’s really irregular. One in December, then one at the end of February. All those symptoms along with chemo symptoms are no fun!

    Insideout2- I have to keep my port until January because of herceptin, but I plan on getting it out once I’m done! I hate it! It still will hurt at times, I can’t wear a bra or a tank top, the strap makes it hurt more. If I sleep on my left side, I wake up with it aching.

    Amelia- we’re here for you if you want to vent!

    I hope everyone is doing ok! I have my last chemo on Thursday! Soon after that I should go to the radiation oncologist to see if that is needed. My margins were clear- but by 0.2 mm! I’m hoping no rads!

    For some good news, my baby turns 6 months tomorrow! I can’t believe it. I feel like I’m going to be so emotional tomorrow, I feel like I was robbed of enjoying her first 6 months because of this stupid cancer.

    Whether you’ve already finished chemo or you still have months to go, WE GOT THIS

  • Olesya
    Olesya Member Posts: 109
    edited March 2018

    my horrible day 7......

    All achy, and the cold with a caugh is lingering, and a headache.....

    I took my antispasmolic pills last night and am taking them today, and they knock me out cold-I sleep all day and don't want to move......

    Ladies, I've been thinking about mastectomy a lot lately. I have a genetic testing consultation on April 4.may or may not will have the testing done (depending on my questioner and the coknsaltunt decision). My MIL said many women who have positive results for go the preventative mastectomy and ovary removal surgery. So yeah, it's been a lot in my mind ..

    Roxy thank you for sharing your experience. .. also a food for thought:)

    Amelia, sorry that you still have the cough. It sucks! I'm fighting this cold for a week now and it's driving me crazy!

    Last night I had a weird experience ( although it seem to happen every round ): I was generating so much heat, as if the hot flash was happening, but no sweat coming out! My temp went up to 37.6. My eyes were feverishly burning. So I slept the rest of the night with a cold cloth over my forehead.it felt heavenly! By morning temp was gone, but boy, I feel like Crum today. Bluh.....

    Rant over. ..

  • insideout2
    insideout2 Member Posts: 108
    edited March 2018

    Dxat37- I had my cycle after the first round, no cycle since.

    Roxy13- thanks for sharing you history regarding implants. Surgery will follow chemo for me.

    Erob321-Hang in there.

    My daughter was a rockstar while I was getting chemo. She stayed most of the time. My husband came for the first time too. They left for a long lunch , which worked for me. It allowed an immediate outlet for her and him. Also I could sleep and not worry about them watching me.

    I ate so much junk the week prior. I am expecting a not so hot time from this. Trying to stay ahead of SE with meds. I am so over drinking water.


  • Char105
    Char105 Member Posts: 28
    edited March 2018

    I haven't really posted a lot but I have kept up on reading all the threads. Tomorrow is my final chemo treatment and I can't wait to get that part over. He said last time he will be turning me over to radiation but that also worries me. I just wonder what the added percentage is? With it being on the left it worries me with the heart and lung.

    Amelia, I totally understand the depression mood. I haven't really left the house except when I have to. I have been off work since my surgery in November so it's been a long while for me to be inside. Over the Christmas holidays it wasn't too bad since I love to watch Christmas shows but since the first of the year it is getting really boring. I did schedule the feel good look better class for the end of the month and I am hoping that will help me want to leave the house. It seems to be very hard for me to do and I'm not sure why.

    I've also had vision problems. Everything is blurry most of the time and lights seem to make it worse. I know I need to get glasses but I am trying to wait until this is over so they will be the correct strength. Dry eyes seem to also be a problem I am having.

    Hope everyone has a great day.



  • Deaelle
    Deaelle Member Posts: 43
    edited March 2018

    Hi All

    I haven't posted for a while, but have been following the threads. I had my 3rd Docetaxal treatment on Friday. I managed to give myself frostbite holding the ice bags this time – so stupid! My fingers are still not back to normal. Really feeling the fatigue today, and the Neulasta shot with the bone and muscle issues is sure wearing me down. I seem to have a persistent issue with feeling cold, to the point that I just can't sleep at night as my feet are freezing, even with 2 pairs of socks and an electric heater. It is the weirdest thing. I thought keeping up on the Naproxen might help with all this, (is it an inflammation thing, which that might handle?) but it makes no difference . And the oral thrush came back today so back to the mouthrinse. ☹ I see that various people have commented about vision issues. I have had some of that too over the last several weeks, but wasn't sure it was from the chemo. Must be though. This chemo gets into everything!

    I'm a bit down in the dumps today, but trying to stay positive. Just tired of feeling crappy. Hang in there everyone.

  • Olesya
    Olesya Member Posts: 109
    edited March 2018

    Horrible, no good, very bad day.....

    Oh, the emotions today!

    Still feel like cra... today. my temperature is lingering at 37..., headache and sinus pressure...

    today i was watching some dance youtube videos, and as you know these commercials pop up. well one of them set me off crying. i didn't really pay attention what was going on on the screen, but when i looked up there were words "metastatic breast cancer"....well, as im writing it, my tears are welling up again.....

    today im vegetating in front of TV all day. trying to do some therapeutic painting on a paint by numbers canvas. im enjoying it.

    sent my little one to the farm as i don't feel i will be able to look after her.

    and im filling up the void with food....


    on a bright side, one of my pregnant(!) friends who was due yesterday(!!), dropped off some soup for me(!!!).


    Hope you, ladies have a good day:)))

  • Roxy13
    Roxy13 Member Posts: 116
    edited March 2018

    Hang in there, ladies!

    And please try to go for a walk or light exercise. I swear it helps me ward off depression (I’m already taking a mild anti-depressant, but dark thoughts still creep up). I find that I started to dread coming home. I guess I now associate home with boredom and loneliness. I actually miss work these days...

    X

  • Deaelle
    Deaelle Member Posts: 43
    edited March 2018

    Keep on trucking Olesya. This day will pass. The painting is a nice idea, so hope that was fun in the end. And good you got a break from parenting today so you can just take care of yourself.

    I took your advice Roxy13 and made myself get out for a walk. It was a sunny day here with lots of snow melting, so it was good to do this, even though I felt like I was just creeping along. It will cold again by the end of the week, so I do feel some pressure to make the most of the good weather days. Otherwise, it is easy to just hibernate completely.


  • murfy
    murfy Member Posts: 259
    edited March 2018

    Hey there lady friends! Keep on hanging tough! There should be light at the end of all of our tunnels at this stage and so far...we've made it!

    I finished my dd TC 9 days ago and am still plagued with side effects that I attribute to a hypersensitivity reaction following last chemo. Visited internist yesterday just to make sure my shortness of breath wasn't becoming pneumonitis and got the 'all clear'. Have horrible scleroderma on left arm (picture), face rash, soft tissue damage from iv on rt arm, eye watering and seeing stars (see ophthalmologist next week), profound fatigue, hypotension and activity-induced shortness of breath.

    It appears that with dd taxotere a lower dose should have been used and I surpassed the cumulative toxic dose. I see my MO in a couple of weeks and will have to educate him as I was his first dd TC patient.

    My internist was hands off, said to give it time and a chance for the poison to clear my system and...more time.

    Personally, I think the worst thing is my new taste aversion to ice cream, my most favorite comfort food. Boo...

    image

  • moth
    moth Member Posts: 3,293
    edited March 2018

    lmurphy - whoa, poor you! I hope all these side effects start to recede soon. I hope you're being spoiled and pampered.

    And seriously? They miscalculated your dosages??? Devil That's awful!

  • okkate75
    okkate75 Member Posts: 75
    edited March 2018

    Hello from TC round 4, day 7! I'm so fatigued it's bananas. I worked yesterday, and it really took all I had out of me. I walked a bit today, and that helped, but now I need to rest. I'm trying to listen to my body and remember that it's busy healing, and I need to give it the space to do that. I saw my acupuncturist and therapist today, and that was really helpful. One foot in front of the other, we're doing it!

  • Roxy13
    Roxy13 Member Posts: 116
    edited March 2018

    Wishing everybody a speedy recovery from side effects!

    I was reading somewhere that doctors tend to prescribe more chemo than necessary. I mean - why do many of us do chemo, anyway, when the surgery removed the cancer? So @lmurphy - Laura, I think these side effects, nasty as they are, weren't for nothing! The higher dose must have killed every single cancer cell that had the audacity to sneak out (very unlikely, of course).

    I have my fourth TC tomorrow. Just when I waa starting to feel better. Oh well... I'm kind of bummed it's in the afternoon (1:30pm). Hopefully I won't have to wait long.

    Take care ladies!

  • Deaelle
    Deaelle Member Posts: 43
    edited March 2018

    IMurphy- so sorry to hear about your WHOLE BATCH of side effects - seems like they are all coming at the same time, which makes it hard I'm sure. Hang in there!

    Good luck tomorrow Roxy13. My chemo times seem to change every time, though so far, I've not had early morning, which I am thankful for. Last time (Friday) we went to a movie in the afternoon afterwards because I knew I would have some hours before it would really start to hit me. Maybe you will done in time for a late afternoon screening? It was a relaxing way to get through some of those hours.

    I stayed in bed for 14 hours last night - just the minimal needed so that I have just enough energy to get to my support group this afternoon. Usually the week post-chemo I just can't make it, but this seems to have done the trick. Then, I'll come home and go back to bed probably. :(

  • Olesya
    Olesya Member Posts: 109
    edited March 2018

    hello everyone!

    Good luck to all of you who gets through the next round. Hung in there ,ladies, who struggle with the mass side effects.

    This round(3rd) was tough on me. First 4 days were surprisingly good.then one day of achyness.the next day was a super rise in energy only to crush hard for the next 3...and my emotions are all over the place, goodness!

    However, walk does make things better.thanks Roxy for reminding/encouraging to do it.today I gathered myself together and went on my walk and to visit local library.wanted to see a reptile show, but tickets were sold out.oh well. I've got a couple of nice books, a card from my caring library staff, ran into a couple of friends, went to have a coffee in a coffee shop with them, bought a very bright and colorful giraffe-piggy bank ( I thought I will gift it to my daughter's 5th bday.but she is only 2 now, so I might use it as a place where I will put little scraps of paper with written notes of what good happened each day.I want to create a happy spot in a house, to display things that lift up my spirit ).

    Fresh air, blood circulating through my body, rhithmic motion of one foot going in front of the other-this day is a lot better then the previous two! Let's set the pattern!:)))

    Picture of me after my walk:

    image

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