Aug 1, 2019 05:28AM amarantha wrote:
I'm joining you gals on Gezmar now. It is showing some signs of working. I'll take any smidgeon of hope that comes my way!
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 9, 2019 12:13AM
Posts 91 - 120 (130 total)
Aug 1, 2019 05:28AM amarantha wrote:
I'm joining you gals on Gezmar now. It is showing some signs of working. I'll take any smidgeon of hope that comes my way!
Aug 1, 2019 12:33PM marianelizabeth wrote:
PB thanks for all your information and the S/E that you had were all the ones my MO mentioned but it is nice to here they subsided. The pain is the one that I hope my team can address quickly. It gets worse every day. I have been encouraged to take my break through hydromorphone as much as needed and it is prescribed as 1-2 tablets every hour as needed. Only recently have I wakened in the night and at 0400 today was so bad that I took 2 tablets at 04, 05, 06 and 07 and it finally eased. I got a call late yesterday with a cancellation appointment for tomorrow to see my pain doctor at the cancer agency. Yay for that.
Aug 1, 2019 12:56PM pboi wrote:
Marian...I’m so sorry to hear about the increasing pain. So glad to hear you are able to see the pain doctor tomorrow so hopefully you’ll have better pain control for the weekend. When do you start the Gemzar?
Aug 7, 2019 01:43PM Lily55 wrote:
Hi everyone, although Taxol seems to have had some effect on the extensive mets I have in back, ribs, sacrum and hips....I could not tolerate it and was really ill on it so I only did 2 cycles before it was stopped. Took 6 weeks before my stomach stopped feeling like a stomach grater.......so now they are talking about putting me on Gemcitabine. Is there anything I can do to make things easier for myself on this, if I take it........am feeling really down as though my life will end soon........and a life on chemo all the time has no real appeal for me.
Anyone else done Taxol first and had problems but done Gemcitabine and been fine....says me hopefully.....
Aug 17, 2019 09:47AM - edited Aug 17, 2019 09:47AM by nbnotes
I will be joining you guys. So the SBRT that I had worked on the liver tumor & lymph nodes completely, but unfortunately the Xeloda didn't hold up its end of the bargain; so, I've got a new liver area and some lymph nodes elsewhere lighting up. We are going to try to radiate those new spots, and then I'll start Gemzar alone. Someone asked about if doxil was an option for me earlier in the thread. I already had my lifetime dose of Adriamycin with my original chemo so MO wants to hold doxil until an end option due to the potential heart issues, etc. It will probably be a few weeks before we start due to doing SBRT first, but I'm fairly nervous about the switch.
Aug 18, 2019 09:57AM Lily55 wrote:
Hope it's ok to join you all. Had my first Gemcitabine last Tuesday. Felt much easier than Taxol but then 36 hours later I was in screaming pain a definite level 11 out of ten. No improvement with fentanyl lollipop. Spent Thurs pm and all day Friday unable to eat or drink vomiting. They sent doctor and ambulance out for me who added morphine to my pain killers but the pain hasn't gone much although vomiting has stopped. Am I right that medical world says morphine not that effective on bone pain?
I also have red urticaria type rash and am using anti bite creams or aloe gel. The cream has stopped the itchiness....it's still red.but that's fine the itchy and in pain combo is not good!
Does anyone else get severe pain 24 to 36 hours after infusion?
Dec 4, 2019 11:07PM Selkie36 wrote:
Hope you are in less pain now, Lily55.
I have been on Gemzar since July. At first it was easy, and it works really well. CEA went from 300 something to 39. Then the nausea hit, and high liver numbers, but no wbc problems. We've tweaked the schedule several times. Now I have headaches, ocular migraines, and fatigue, but with a reduced dose my CEA went up a smidge. So I just have to deal with the SEs for now. Compazine and water. How's everyone else?
Apr 24, 2021 05:56PM Bliss58 wrote:
Bumping this thread.
I started Gemzar Friday, April 23 2021.
Anyone else taking it as a monotherapy?
Apr 30, 2021 02:58PM karenro wrote:
I recently started gemcitabine as a monotherapy, Bliss58. Two weeks on (once a week), one week off. Next week will be the off-week of my second cycle.
Apr 30, 2021 10:11PM Bliss58 wrote:
Hi Karenro. Sounds like we started at the same time. I'm 3 weeks on (once a week) then one week off. I don't have much of an appetite battling some nausea and constipation. How is Gemzar treating you?
May 1, 2021 10:53AM karenro wrote:
All in all, it's very tolerable. I got medication for the nausea. I'm finding that the more fresh vegetables I eat, the better off I am in terms of nausea and constipation. Somehow it's easier to eat vegetables than drink water for me, which is weird. Still working it all out.
May 1, 2021 11:50AM Bliss58 wrote:
Eating vegetables and drinking water have been hard for me. Feeling better today, so will try more veggies and water. Glad it's been tolerable for you. May it continue for us both and work it's "magic."
Jul 15, 2021 10:58AM GR4C1E wrote:
I'm supposed to be starting Gemzar but my MO requested insurance approval for Gemzar + Neulasta, which my insurance company swiftly denied. Now they are approving the Gemzar only with a "wait and see if you need it" attitude on the Neulasta.
Is this the new normal? No Neulasta until you prove you need it?
My blood counts stayed steady throughout 6 months of Abraxane and I'm hoping it's the same for Gemzar.
Did any of you out there have Gemzar and not need Neulasta? Is my MO being overly cautious?
Jul 23, 2021 12:02PM GR4C1E wrote:
Had my first infusion of Gemzar on Tuesday. Not a fan. Today, I feel like a cancer patient. Symptoms getting progressively worse with each passing day. Headache, sore throat, swollen glands, coughing, shortness of breath, dizzy, fatigue, two sores on either side of my tongue and my temp has landed at 99.5 today. I'd be pissed off but I just don't have the energy.
Jul 29, 2021 07:26AM - edited Jul 29, 2021 07:26AM by LoveFromPhilly
It's been a very long time since I have posted anything. How is everyone doing? Been going down the MBC road of life, sometimes very quickly and sometimes very slowly. Recently things have taken off more quickly and I started my first chemotherapy of Gemzar yesterday. I don't feel badly at all! Fingers and toes crossed!
How long after receiving your first dose or second dose did you start to feel badly if you do/did?
I had a unilateral mastectomy in March for an aggressive tumor that popped up in my primary location of the breast cancer. Now a bunch of little skin mets have popped up around surgical site. I had them biopsied when I was under anesthesia getting the port placed on Monday. Started chemo Wednesday and found out yesterday that the biopsy of the skin mets came back positive as breast cancer skin mets.
Anyone been through this? How did it go? We are hoping the Gemzar clears away the mets and that will also clear away any internal mets as well.
Much love and hugs from Philly to everyone <3 <3 <3
Jul 30, 2021 09:13AM GR4C1E wrote:
LoveFromPhilly, for me, my first infusion was on a Tuesday and by Friday I started having flu symptoms. My fever topped out at 101.9 and lasted through Saturday. By Sunday the temp started coming down. My next infusion is Tuesday next week. I'm going every other week. My labs are okay right now.
I called my MO to follow-up. They said the first is the worst (side-effects wise), and then it gets better after that. I'm not sure I believe that! Either way, I'm about to find out next week. I'll keep you posted!
I'm sorry about the biopsy. I didn't even know that skin mets was a thing. I actually have this weird patch of skin on my hip and I think I'm going to mention it to my MO the next office visit.
I haven't had a tumor marker test since the first Gemzar infusion so I'm not sure how it's going. I'm hoping it's having the same impact as Abraxane did. Like you, I'm keeping my fingers crossed!
Good luck and good vibes coming your way!
Aug 1, 2021 12:13AM LoveFromPhilly wrote:
Hi GR4C1E !! Long time! So good to hear from you <3
Wow we definitely have similar post-chemo experiences. I felt so terrible yesterday! That was two days after the first infusion. I had it on Wednesday, on Thursday I had a petscan and it was right before the scan that I felt my body fall into a very heavy fatigue. By Thursday night my neck and shoulders were aching and then by Friday morning I couldn't sleep past 5am because I couldn't take a deep inhale because it was too painful. And fever up too almost 101F for me.
After many phone calls, my MO finally called back and probably got the techs to read the petscan results and turns out I have a pleural effusion on my right lung that I need to go in and get drained on Monday and my on top of that my liver is full of active and concerning lesions. OH BOY!
So what do we do? We keep moving forward with the Gemzar in hopes that this helps put those pesky liver lesions to sleep!!! I started a pretty what I think may be a heavy dose of decadron last night and it is a 30 day supply which seems like quite a bit! I don't know how "normal" any of this is! I cannot sleep and even though I took a Valium I am wide awake right now. LOL! This is all so wacky!
I definitely think showing your MO the spots that you are seeing just to rule anything out. I mean, I kept wondering what difference it would make to get them biopsied and so I asked and here is what I found out: mine were benign for breast cancer. The lab will give the pathology and tell us how aggressive they are or are not. Like looking at the Ki67 marker. My breast tumor that was taken out had a Ki67 of 75% which is INSANELY high. This means that the cancer is dividing rapidly. That tumor was removed back in March and I had a unilateral mastectomy. Just out of the blue in mid-July, these weird little bumps showed up around mastectomy scar site.
One other test that is being done is something through Foundation One called Microsatellite Instability (MI). This has to do with how cells DNA divides to make duplicate cells. Anyway, it has been discovered recently that tumors with a high MI respond really well to immunotherapy I believe. I think Keytruda was mentioned. That is all the info I have been able to mentally process and gather at this point.
I am sending you good vibes your way too neighbor! I actually go to Holy Redeemer for my care - not too far from you?
Aug 2, 2021 12:56PM GR4C1E wrote:
LoveFromPhilly, it's a small world. I'm about 30 minutes form PHL airport. My breast surgeon is @ Holy Redeemer. I go to St. Mary Medical Center for my care. I have had Foundation One testing but I am triple negative and my PD-L1 is less than 1 no, so I don't have the genetic/hormonal qualifications for immunotherapy. Fortunately, the chemo has been working hard to reduce the cancer in my right lung. I too have a pleural effusion, and I had it drained once, but it reduced and stayed stable after I started chemo. Hardly even know it's there. My last tumor marker test after 6 months of Abraxane had dropped from 68 to 19, so that was encouraging. I'm hoping Gemzar is worth the struggle, and keeps things steady. Infusion # 2 is tomorrow and I haven't been able to sleep thinking about it, but I know that the infusion part is easy, it's day 2 my body starts to power down and day 3 gets dicey. I thought it was strange to be so exhausted and unable to sleep! What the.....?
I called my MO's office on day 6 after the first infusion of Gemzar and told them about my symptoms. A nurse practitioner argued with me that shortness of breath or coughing was not a side effect. I had to read her the print out SHE gave me: Side Effect #1- flu-like symptoms. I asked: Have you never had the flu? She said: Of course, I have. I said: You know that's an upper respiratory virus, right? People with the flu have a cough.
Then she said: You have the symptoms of dehydration. I said: Not possible. I'm nauseous, but I'm not vomiting. I typically drink a two quart container of water during the day and another two quarts in the evening. She said: Well, you have to drink at least 80 ounces of water per day, so I suggest you come in so we can put you on IV fluids.
I said: There's 32 ounces in a quart, 4 quarts in a gallon, that's 128 ounces of water. Did I mention that I'm not vomiting? I'm consuming and peeing MORE than 80 ounces of water per day!
Doesn't instill a lot of confidence! (I declined the IV fluids)
I have Gemzar every other week and see my MO once a month, so next week I get to let him know that little nugget! Maybe some continuing education in that office is in order. Yikes!
Okay, Philly! Let's get ready for Round Two!
We can do this!
Aug 3, 2021 11:39PM LoveFromPhilly wrote:
GR4C1E! We got this!! 2nd round tomorrow for me! Did you have yours today??
I feel like I am not totally in body as much as I am trying to stay here psychically. Does that make sense? So weird!
Also, I hate when healthcare providers don’t listen cause they think they already know it all, not a good HCP in my humble opinion. I applaud you for continuing to pursue that conversation until it “seemed” they finally maybe heard you a little bit?
I take compazine for nausea and it does help so much! Also, it is calming down my steroid craziness 🤪🤪🤪🤪🤪🤪🤪🤪🤪🤪🤪🤪🤪🤪🤪🤪🤪
My BC surgeon is at HR too! I wonder if we see the same person? Dr. Mazor? She’s my homegirl!! I love her!!
Much love and hope you’re doing okay sis!! 💜❤️🩹💜
Aug 5, 2021 09:59AM - edited Aug 5, 2021 10:05AM by GR4C1E
I had my second infusion on Tuesday and felt a little tired yesterday, but today I feel optimistic. I'm not as fatigued as I was at this time after the first infusion. Keeping my fingers crossed that it isn't as bad the second time around. So far, so good.
I had Dr, Krisher @ HR. She's pretty amazing. Probably one of the most compassionate doctors I've ever met. I felt like she was going through all of it with me! I also liked the way she treated her staff. She was very professional and demanded the same from her administrators and nurses. I love that about her. I just always felt "taken care of" after leaving there.
Oh, and no. She, the nurse practitioner, did not hear me. She went so far as to NOT bother to read my chart before intervening in an attempt to stop my chemo on Tuesday. She pulled me aside into a private office to again discuss her "coughing is not a side effect" theory. (my BP was perfect, temp was 97.5, we hadn't even done my labs yet) She insisted we could not go any further and had to stop chemo until I could get a COVID test.
Yeah, I lost it! I sat there for an hour while she searched CVS locations to send me to, which were all booked about two weeks out. Besides, if the Delta Variant breakthrough infection is a real possibility, why didn't they have COVID rapid tests right there, in the office, to keep their own patients safe? You know who has the rapid tests? CVS! If they can get them, you can get them. I finally asked for one of the nurses from the infusion room to come in so I could speak with her.
I said: Do you remember the first time I came in for chemo six months ago and I couldn't breathe well enough to complete a sentence without coughing?
She said: Yes.
I said: Do you remember what happened when I came back a week later?
She said: You could talk.
I said: And the week after that?
She said: The coughing stopped.
So I said to the jackass who told me I probably had COVID: I don't have COVID, I'm pretty confident that most people with COVID don't have a temperature of 97.5. I have cancer growing in my right lung and a pleural effusion that is probably filling back up with fluid - that is noted in my chart as something that is never going away, according to my MO. The only thing that stopped the coughing was the Abraxane chemotherapy. It took one whole month for your administrative staff to set up an appointment for me during the transition to Gemzar. A WHOLE MONTH, at which time my tumor markers have jumped up because I have been without any treatment for a whole month. It stands to reason, that even if you don't believe coughing is a side effect of Gemzar it is definitely a disturbing side effect of BEING A PATIENT IN THIS OFFICE! Now, I either get my chemo today or I find another Oncologist. Your call.
It was a total Shirley MacLaine/Terms of Endearment rant! I was so pissed. I will have to admit that one of the side effects of Gemzar might be a low tolerance for stupid people.
They finally took me in the infusion room and started the labs. Those poor nurses had to stay an hour late. I hope they say something to the doctors so this doesn't happen again to another patient.
Yeah, I'm definitely considering leaving this practice. I was looking into the Abramson Cancer Center at the University of Pennsylvania. They have a small satellite office near me and they are listed as approved providers on my insurance. I think it's definitely worth looking into. My PC physician is a PennMed doctor and I had him copied on every single test/xray/ct/pet scan. They have a great and well managed website so sharing my test results will be easy within the network. I'm definitely going to have a heart-to-heart with my MO next Tuesday about my treatment this week.
I'm always envious of people who can take compazine. I'm allergic. Found out years ago after a bout of a bad stomach virus. Two days of compazine led to my first and only seizure. Eyes rolling back in my head, almost swallowing my own tongue kind of thing. It's amazing, though, how fast a little shot of benadryl at the ER made everything alright, and they sent me home. They told me, don't take compazine any more, you're allergic! Duly noted.
I actually didn't have a hard time this time with the steroids. I've been sleeping in 3 to 4 hour increments. I wake up midway through the night but I've been able to eventually get back to sleep. Last night I cumulatively slept for 8 hours! (4 hours at a time) I'll take it! Some nights it's only 4 hours. But two fours in one night, JACKPOT!
I have to say, the best purchase I've made recently was my fitness tracker. I like being able to see my heart rate, and sleep cycles. Something about seeing it on my phone makes me feel reassured. Yeah, I might feel a little tired today - but dang it! I got 8-ish hours sleep! It gives me the strength to push past the sluggish bits of the day.
Sending good vibes your way and hoping you're feeling well.
I'm so excited to see my eyebrows again! The Abraxane made them disappear, but the Gemzar let them come home!
Welcome home ladies. I shall never pluck you again! This is a safe space for facial hair! Please spread the word to my eyelashes.
(But keep it quiet around my upper lip. It's a "no mustache" zone. Drastic measures will be taken! I'm not afraid of a little hot wax, but your lip-hair army should be!)
Aug 5, 2021 02:22PM GR4C1E wrote:
Uh oh. Spoke too soon. Gemzar is creeping up on me this afternoon like an evil chemo ninja! Temp just hit 99.6. Dang it! (my eyebrows still look good, though)
Aug 9, 2021 03:22PM GR4C1E wrote:
Okay, I survived the weekend with my temp only hovering around 99.6 so I guess that means it gets better. I was actually not in bed all weekend. Looks like I can function with a low grade temp. Unfortunately my breathing is getting harder and the coughing persists. True story; after my office visit from hell, my MO's office attached a link of Gemzar side effects to my patient portal. In the list they sent, shortness of breath and coughing are listed. I have a visit with my MO tomorrow. It's going to get weird.
Hope you are feeling well, Philly.
Aug 13, 2021 08:14AM LoveFromPhilly wrote:
Hey GR4C1E !!
How did the rest f the week go?
yes things are definitely getting weirder!
I feel like the Gemzar is making me really dumb and like my body is made of the Tin Man from the Wizard of Oz without any good oil for all my squeaky creaky tight muscles. Do you have that sensation too? Appetite is NO issue at all.
I feel like I may have more fluid building up in my lung again and don't wanna go through another drain but I am a little nervous I may have to.
Let's stay posted.
Brenda aka Philly
Aug 13, 2021 10:12AM GR4C1E wrote:
Brenda aka Philly!
Yep, I'm feeling like a rusty, creaky, robot myself. I was supposed to run the Marine Corp Marathon on my company team in October and I had to drop out. Walking has become a chore, running is nearly impossible.
I'm with you on the fluid build-up thing. I feel the same way, but surprisingly, I had a chest x-ray last week to check, and it looked "improved" since the last one. Even the pleural effusion was said to be smaller - but it sure doesn't feel that way. I'm hoping this horrendously crappy weather is the culprit and will reassess how I feel next week when the humidity breaks. I mean, normal humans can't breathe in this weather, so I'm just going to stay inside and hope for the best. A nice grumbly little thunderstorm that brings in dry weather and no power outages, please!
I had a thoracentesis last year and it wasn't as much fun as I had hoped, so I get your apprehension about getting it drained again. The procedure, for me, was easy-peasy. The recovery was three days of *snap*crackle*pop* in my right lung while it tried to fill up the air space where the fluid used to be. I eventually felt better, but when my MO asked me before we started chemo in January if I wanted them to drain it again, that was a hard and firm, "no thank you." But, like you, I've done it before and if I have to, I can do it again! (don't wanna) BUT I CAN! You can too.
HUGS to you too! Getting myself psyched for Round Three next week! (takes deep breath -*coughs*)
Aug 13, 2021 03:12PM SusanR wrote:
Hello ladies! I'll be joining you on Gemzar, my first dose is Wednesday. I'm a long term Stage IV gal with 12+ Years of bone Mets. I had 8 great years on Femara and Faslodex but have burned through at least 8 other chemos in the past 4+ years. I'm sure hoping to get a decent ride out of Gemzar.
I've read all the posts since this thread started and really appreciate all the input. I'm sure glad you 2 ladies are on here and hope we all have success with this one.
I'll let you know how it goes next week
Aug 16, 2021 08:56AM GR4C1E wrote:
Hey SusanR - Welcome to the Gemzar club. Philly and I started around the same time so we've been comparing notes. I had a rough start but the infusions seem to be getting easier. I have lung mets and their was a month long lag time in the transition from Abraxane to Gemzar that definitely didn't help. I have my third infusion tomorrow (Tuesday) and for me, the side effects hit on day three, so by Friday I'm tired, achy and feverish, but my recovery time at the second infusion was much quicker than the first.
Good luck! I'll be thinking of you and sending good vibes your way!
Aug 16, 2021 04:12PM M3llon wrote:
After six taxol infusions that produced mixed results I started Gemzar/Carboplatin on August 6. I’m on a three week cycle: two weeks of infusions, one week off. This is my first off week. Taxol was pretty rough, so this seems better but ask me again after 6 cycles.
Nausea, aches, fever, general feeling of head spins start two days after infusion and clear up after three days. Although I never feel 100% right in the head.
I’ve been on some sort of treatment for 3.5 years and everything has gotten better but my liver.
It helps to read your posts so I know what to expect. Gemzar the win.
Aug 18, 2021 01:42PM Wanderingneedle wrote:
I’m starting Carboplatin/Gemcitabine on Friday. It’s a two-week on one-week off schedule. Can anyone give me some insight into side effects and when they show up?
Aug 19, 2021 07:59AM LoveFromPhilly wrote:
I am so thrilled we have our lil (and maybe soon to grow!) Gemzar group here!
So far I am on Gemzar as a monotherapy too like Bliss and I think Karenro and who else? How are the treatments going at this point for those who started a while before us?
I just had Round 2 of Gemzar, so third infusion yesterday. I am on 2 weeks on (once a week, weeks 1 and 2) and one week off (week three) to catch up.
I have had two infusions and I felt very sick after the first one but turned out I needed a thoracentesis and that helped a lot. I also needed a blood transfusion. The cancer is in my marrow and my liver and all over bones and some suspicious areas of the lungs.
PLEASE GEMZAR WORK!!!!!!!!!!!!!!!!!!!!!!!
How is everyone else doing? I seem to feel okay from the steroids they make me full of beans! Jumping around cleaning and cooking and then falling over for like 2 hours on the couch. Kinda fun and weird and awful. LOL. My body feels creaky when the chemo kicks in and I feel slow and fatigued. Like I can walk one block and then need to sit down on a bench and rest for a moment.
I am trying to get exercise in and make myself move at least 30 minutes a day even if in 5 minute increments that total 30. So awaiting the Gemzar to kick in. Everyone says it gets easier. Once the cancer gets under control. FINGERS CROSSED MY FRIENDS!!!!!!!!!!!!!!
Biggest hugs from vacation in Ocean City, NJ!
Philly aka Brenda
Aug 20, 2021 10:41PM Wanderingneedle wrote:
I had my first dose today. Overall about 2 hours infusion time. Premeds include aloxi and dexamethasone. I know that steroids will make me feel good tomorrow and the second week is always harder than the first. I can put up with SE more than I can put up with my cancer growing right now.