Donate to Breastcancer.org when you checkout at Walgreens in October. Learn more about our Walgreens collaboration.
Join us for a Special Meetup: The Benefits of Exercise for Anyone With Breast Cancer, Oct. 16, 2024 at 2pm ET. Learn more and register here.

Gemzar

245

Comments

  • dianalynn
    dianalynn Member Posts: 14
    edited February 2019

    thank you! We are trying a drug called navelbine on Monday

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited February 2019

    my doc has mentioned navelbine as a possible next. Just another chemo. May I ask, why did they keep you on Gemzar for 5 months if it wasnt working? My doc says if by my next bloody draw (in a couple of weeks before third cycle) my TMs are still rising he will take me off of it.

    Sunset

  • dianalynn
    dianalynn Member Posts: 14
    edited March 2019

    no, five cycles. I should have said five treatments. I only started this drug in January and I knew pretty quickly it wasn’t working. Sorry for the confusion!

  • Mamita49
    Mamita49 Member Posts: 58
    edited March 2019

    Seven years ago, i was on Navalbine. Very successful.


  • dianalynn
    dianalynn Member Posts: 14
    edited March 2019

    that is good to know! I’ll take any positive news I can get!

  • Mamita49
    Mamita49 Member Posts: 58
    edited March 2019

    I have a question too. I had 8 cycles, 16 treatments. More than most women would have. I saw my Onc yesterday, and Scan is good. I had 2 small liver buggers, one gone now, and the remaining single one is too small to mesure. So.... Gemzar worked very well. He wants me to stop Chemo, and zip with radiation that small bugger, have a scan again and then put me back on Tamoxofin or Fermera.

    Those anti-homonals did stop working for me 7 years ago, and now he wants me to get back again after 2 treatments of radiation. He said even if Gemzar is working well, I cannot put you on Chemo more than 8 cycles.

    Scared about the anti-hormanals.

    Any input please would be very appriciated

    Carol


  • blainejennifer
    blainejennifer Member Posts: 441
    edited March 2019

    Mamita,

    Did your MO explain the reasoning behind limiting the Gemzar to eight cycles? I'm on Gemzar/Carboplatin now, and there has been no talk of eight cycles and out. It has been the usual "keep on going till it fails" scenario.

    I'll be sure to ask MO what gives. It's working very well; my TMs are plummeting and I don't have pain anymore. That's the good part. The bad part is that it is really messing with my platelets (49!) and I have no energy at all. So, the thought of eight and out is somewhat seductive. They tried a platelet transfusion, and I had a very bad allergic reaction (couldn't breathe, large febrile reaction, etc.). MO says that he'll try again, if necessary, but I'll have to have a bunch of steroids on board, and be closely observed.

    MO has talked about revisiting anti-hormonals that I had success with 6 years ago. For me, that's Faslodex. Now that my liver has cleared up, I might even be able to have it with one of its fancy new sidekicks. I would venture to guess that if it has been 7 years or more since you tried a regimen, there shouldn't be a problem with trying again. In the states, it might cause some insurance reimbursement problems. In Canada, do you have more leeway?

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited March 2019

    mamita,

    what else have you been on for the past seven years?

  • Mamita49
    Mamita49 Member Posts: 58
    edited March 2019

    Almost 11 years ago, first time BC. Stage 2. Came back after 4 years. We have this " once a years bone scan and ultra sound policy" . Thank goodness, because I had two tiny liver buggers, so small, my TM where not even elevated. Doxil ( no good for me ) after Navalbine. It took the meds only 3 or four rounds, clear scan after a few weeks.

    After that the cancer came back almost each year, no vital organs involved, 2 lymphnodes only each time. I was on almost each anti-homonal. From Tamoxofin, Femera, Amorasin, arimidex, Faslodex, Ibrance..... Lymphnodes clear, lymphnodes back...... After seven years again 2 mini tiny liver buggers. Doc thinks they are gone, since the remaining one was too small for the radiologist to mesure in January.

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited March 2019

    mamita, I feel like I've been on everything, as well. Although I do have a few more chemo options left. I'm also being tested to see if I have the right mutation for apselibib (sp?). I've historically had little or no mutations to target. If Gemzar/Cis works for a while, ONC says in about six months we'll radiate or Y90 anything left in the liver, then..don't know..maybe will try tamoxifen, as well. It's awesome you had 8 cycles of Gemzar. Keep us posted. Curious what you end up doing.


  • Parrynd1
    Parrynd1 Member Posts: 343
    edited March 2019

    For those on Gem/Cis how long did you have till you saw results? I have skin mets so we having been going by that but it’s hard to tell if the chemo is working. I had 1 infusion of Gem/Cis and am on the day 1, day 8, then week off schedule. Well had my first day 8 yesterday and MO said she didn’t think it was working based on skin mets. I don’t think 1 week is enough time so I opted to keep on this treatment. At the same time she is the doctor so am I shooting myself in the foot with this

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited March 2019

    Parry, that certainly doesn't seem long enough to see if it's working. My ONC says after second full cycle we should know. I hope it improves next round. How about tumor markers? Is that an indicator for you?

  • Parrynd1
    Parrynd1 Member Posts: 343
    edited March 2019

    I told her I want to stay on it for a few more rounds. My TM’s have gone up every time I e had them done. I thought a month or two on a new treatment was the test drive, but just sitting in the car on the lot

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited March 2019

    I know the feeling. I haven't had a TM drop in over 6 months. Just keeps escalating. Next draw is in two weeks. Fingers crossed.

    I do believe every treatment should be given at least two months. One is a poor indicator.

  • blainejennifer
    blainejennifer Member Posts: 441
    edited March 2019

    Any TM rise in the first two cycles should be viewed as tumor flare, IMO. My MO never starts talking about moving on till the third cycle, and even then, he throws me in a scan first.

  • blainejennifer
    blainejennifer Member Posts: 441
    edited March 2019

    Started my third cycle yesterday, Tuesday, 3/12/17.

    After the first cycle, Bilirubin went from 2.7 (yikes) to 2. Liver values dropped, but not into normal range.

    After the second cycle, which was interrupted by Influenza A, Bilirubin is at 1! TMs halved, from 1400 ish to 700 ish. All liver values are near normal, and no more fear of liver failure.

    This combo works - gemzar/carboplatin! It kicks my fanny, but the influenza seems to have been the bad actor there as I am feeling much more energetic now, and can even climb the stairs, without feeling like I'm done for the day.

    Is anyone else's hair thinning? Mine sure is. I have it very short anyway, but am thinking I need to go even shorter to hide the shed hairs. I wore a black dress yesterday, and thought that the cat was really shedding. After picking a few hairs off, was surprised to find that they were mine.

    Hope everyone here is doing well, and enjoying more evening daylight. I know I am.

  • Parrynd1
    Parrynd1 Member Posts: 343
    edited March 2019

    Blaine your news is just amazing!! Thank you for sharing

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited March 2019

    Jen! So good to hear!!! I start my third cycle on Monday. Was supposed to be tomorrw, but I changed the dates. Liking the extra days of feeling ok too. I hope I get good news like you. my hair is not thinning yet. I did start with a lot, so we'll see.

    Hi Parry. Hope you are doing ok. I really admire you.

    Stef (Sunset)


  • Parrynd1
    Parrynd1 Member Posts: 343
    edited March 2019

    Hi Stef and thanks :)

    Doing ok. I admitted to myself this morning my skin mets have progressed since being on this treatment. Part of me wants just do cycle 2 day 1 & 8, have my scan and see what my lungs are looking like. I have a bad feeling about the scan. Another wait to see if my worry is over something or just me giving in to the scanxiety.

    The schedule on Gem/Cis is nice and makes planning a little trip here or there easier. I’ve only noticed some nausea, muscle twitches and fatigue. That’s it. Really not a bad chemo from others I’ve tried.


  • Jaylea
    Jaylea Member Posts: 440
    edited March 2019

    Hi all, I'm so glad to have found this thread. My MO has prescribed Gemzar/paclitaxel to start next week. She says it's the strongest combo out there, but my cancer is on the move and she wants to hit it hard.

    I had a good year on Ibrance/Femara, but started feeling punk in the Fall of 2018. Low energy, persistent cough, lack of appetite. Even so, my scans were still showing stable. Finally things came to a head a few weeks ago when I couldn't keep any food down. Went to ER with severe dehydration. After 12 days in the hospital, all manner of tests, and a g-tube placed in my belly for nutrition, I have answers. Endoscopy showed that my esophagus was tightly constricted and biopsy confirmed cancer. Wait, what? I asked MO if she'd ever seen BC present in the esophagus, and she said while it's certainly not typical, she's never surprised at where it shows up. Because it's wedged between the mucus and muscle walls, it didn't show up on scans. I am also showing progression in lungs, bones, and a small new spot on my liver.

    I don't have full protocol yet, but MO said this would be a short stint - 3 to 4 max of 3-week cycles. If all goes well after that, I can go back on an antihormonal. She said SE's to watch out for are infections and HFS.

    Parry, I am so praying for you that this combo works. My God you need a break. BlaineJennifer, had to laugh at your vitrectomy alarm system!

  • pboi
    pboi Member Posts: 148
    edited March 2019

    Hi Jaylea,

    I'm currently on Gemzar/Taxol. I don't post often but do come to this thread and the Taxol for Stage IV thread, as I haven't seen anyone on bco currently on this particular combo. I was diagnosed with a very large 13cm+ liver tumor last August. I started this combo in September, and will begin my 10th cycle of this next week. Tumor volume has come down 50% over these past 6 months, with last scan a couple weeks ago, showing stability at this point.

    Worst side effect for me is the hair loss, and I'm so thankful it's working and I'm tolerating it well. I have a little fatigue from the steroid crash, a tiny bit of nausea every now and then, but overall I tolerate it well. I've been lucky that my WBC, RBC, and platelets are doing well, so I've had no delay or decrease in treatment. I also ice my hands and feet during Taxol, which I think has helped me keep neuropathy away so far.

    Hope the Gemzar/Taxol knocks those mets away for you too!

    PB


  • Jaylea
    Jaylea Member Posts: 440
    edited March 2019

    OK if I'm your new fangirl, pboi? I'm so glad you're tolerating the tx and managing the SE's. After reading the earlier posts I briefly hoped I might keep some of my hair, but realized the taxol makes that impossible. Time to launder those big girl pants.

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited March 2019

    jaylea, well that does suck. I'm sorry to hear. I'm taking Gemzar with Cisplatin, because I didn't want to lose my hair. What you will be taking is very strong, and I imagine will get you back to a place where you will feel more safe.

    Sunset

  • pboi
    pboi Member Posts: 148
    edited March 2019

    Fangirl...lol Jaylea : ) Unfortunately if you are on the same 3 week Gemzar Taxol as I am, you will lose your hair. Some on weekly Taxol don’t lose it, but I get like dose dense Taxol with Gemzar week 1, then Gemzar only week 2, and have week 3 off. My hair didn’t start falling out until about week 3, then my eyebrows and eyelashes followed suit a few weeks after that.

    PB

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited March 2019

    finally , a drop in CEA!Let's hope that keeps up. Onward!

  • pboi
    pboi Member Posts: 148
    edited March 2019

    Yes! Great news!!!

    PB

  • blainejennifer
    blainejennifer Member Posts: 441
    edited March 2019

    Today was supposed to be Cycle 3, week 2, with Gemzar. Heck, my platelets were so low, I couldn't even get a reduced dose.

    On the other hand, all my liver values were normal! Hemocrit was really low too, but they didn't want to transfuse because, well, I felt good. Had energy, and got myself to treatment all by my lonesome. I was shocked the labs were so bad.

    Has anybody else experienced this?

    What I have learned: if you are sitting next to your husband, and you compare arms and yours look like they've been carved out of pure, white marble, while your husband's look almost flushed in comparison, you just might be anemic. Beige nail beds might be a hint as well.

    Onward and upward.

    Jennifer

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited March 2019

    jenn, I assume you are already getting nuelasta for your white blood cells? And still they are tanking? Ugh. Whyyy?

    Sunset

  • Jaylea
    Jaylea Member Posts: 440
    edited March 2019

    Shoot, Jennifer, I don't know what's worse - feeling good when labs are in the tank, or feeling bad when labs are normal. You just want your body to Pick The Appropriate Response! I hope you get resolution and back on treatment in short order.

    Pboi and anyone else, how do you set up for icing hands and feet? Do you bring your own supplies or does the clinic do it for you? Do you ice for the entire treatment or is there a critical time to zero in on? I'm trying to prepare for my 1st infusion of Gemzar/paclitaxel on Friday.

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited March 2019

    I iced for doxil, but I dont ice fir gem/Cis. Are you sure you need it?

    When I iced I brought ice gel booties and gloves to the infusion in an ice chest (with ice) to keep them cold until I needed them. Got them on Amazon