Please respect that this forum is for members with stage IV/metastatic breast cancer only. There is a separate forum for caregivers and friends: Caring for Someone with Stage 4 or Mets.
Posted on: Jan 8, 2019 11:13PM
Posts 31 - 60 (130 total)
Feb 28, 2019 05:31PM ABeautifulSunset wrote:
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.
Mar 2, 2019 06:12AM Mamita49 wrote:
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
Mar 2, 2019 10:19AM blainejennifer wrote:
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?
Mar 2, 2019 10:32AM ABeautifulSunset wrote:
what else have you been on for the past seven years?
Mar 2, 2019 02:37PM Mamita49 wrote:
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.
Mar 2, 2019 02:51PM ABeautifulSunset wrote:
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.
Mar 2, 2019 11:29PM Parrynd1 wrote:
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
Mar 3, 2019 11:29AM ABeautifulSunset wrote:
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?
Mar 3, 2019 02:50PM Parrynd1 wrote:
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
Mar 3, 2019 03:14PM ABeautifulSunset wrote:
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.
Mar 4, 2019 01:05AM blainejennifer wrote:
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.
Mar 13, 2019 04:00PM blainejennifer wrote:
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.
Mar 13, 2019 04:13PM Parrynd1 wrote:
Blaine your news is just amazing!! Thank you for sharing
Mar 13, 2019 06:45PM ABeautifulSunset wrote:
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.
Mar 13, 2019 06:57PM Parrynd1 wrote:
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.
Mar 14, 2019 11:59AM Jaylea wrote:
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!
Mar 14, 2019 01:30PM pboi wrote:
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!
Mar 14, 2019 06:52PM Jaylea wrote:
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.
Mar 14, 2019 08:23PM ABeautifulSunset wrote:
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.
Mar 14, 2019 09:35PM pboi wrote:
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.
Mar 18, 2019 07:16PM ABeautifulSunset wrote:
finally , a drop in CEA!Let's hope that keeps up. Onward!
Mar 18, 2019 08:22PM pboi wrote:
Yes! Great news!!!
Mar 19, 2019 05:48PM blainejennifer wrote:
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.
Mar 19, 2019 06:52PM - edited Mar 19, 2019 06:53PM by ABeautifulSunset
jenn, I assume you are already getting nuelasta for your white blood cells? And still they are tanking? Ugh. Whyyy?
Mar 19, 2019 07:21PM Jaylea wrote:
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.
Mar 19, 2019 08:49PM ABeautifulSunset wrote:
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