is there anyone here on Gemzar? Had my first treatment on minday
I'm just finishing up 6 rounds of gemcitabine and carboplatin. I found it quite tolerable, just hard on the blood counts. Just had a PET scan today, so we'll see if I'm still NED.
Thank you so much! All the best to you!0
Dianalynn and AllyBee,
May I hijack your posts and turn them into a conversation about Gemzar, specifically? I did a search, and we don't seem to have anything like that. Since I am frightened to bits about recent turns of cancer events, I sure could use a place to hang out and ask Gemzar questions. If you want me to make my own "thread", I will. Do we call it a thread? I'm oldish, and don't know the correct terminology, and my in-house-tech-support (DS) is taking a shower.
History: I am heavily pretreated, with mets in my bones and liver. Up until now, my bones have been the naughty players, but the numbers for my AST and ALT jumped up a bunch this week. So, MO proclaimed that another MRI was needed. Normally, my liver tumor is about 8 cm with a necrotic core. This time, it's about 10/11 cm, with the same core. Not the end of the world, BUT if Gemzar/Carboplatin doesn't resolve the liver, it is time to talk about scary stuff. The new growth is diffuse, so there's not much to aim at for radiation. Mind you, I will be seeking second opinions.
For those of you who like to know a gal's intake history, here we go:
March, 2006: Diagnosed with Stage 2B, treated with ACT and radiation, pretty standard stuff. Because I am/was fat (less fat now - by no means slim), they calculated my ACT dose based on a mid-point between my real weight and my goal weight. Late at night, I get bitter, as ASCO has retracted that protocol. They were scared that a dose based on real weight would cause too much cardiotoxicity. My RO calculated the radiation based on real weight.
I merrily go about my life. No one ever gave me a lecture about controlling my weight, and fat's correlation to metastasis. I even asked my NYC MO about it, and she brushed it away. I wish, now, that white lab coated folks had grabbed me, and given me a good shake about estrogenic adipose tissue. Sure, I could have gone to stage 4 even if I were slender. It happens. I am on the standard 5 years of Arimidex, as I developed suspicious endometrial thickening on Tamoxifen, and used it as an excuse to get a total hysterectomy. I wanted the ovaries gone.
Christmas, 2012: I get freaking Whooping Cough! It hurts. Each coughing session just kills me as my ribs feel like they are breaking. On my annual visit with the NP at MO's, I mention this. She says that maybe I ought to get some blood work done, just to see what is going on. For insurance purposes, and because I am an idiot, I ask that I get this done at my PCP's, because it's totally free as part of my Wellness visit there. I get the draw in about a month. The poor NP at PCP's calls me up and says that my CA 27-29 is over 800. Oh my.
They start me on Tamoxifen and Zometa. In about a month, TMs were 2,700. Double oh my.
Weekly Taxol for about a year, till the TMs which had responded well to Taxol, start creeping up.
6/2014: Xeloda. Radiation in right pelvis in Fall of 2014, as disease is bone only. and Xeloda is holding the cancer at bay - except for a spot on the right hip. I'm zapped. It does the trick.
10/2015: Rising TMs, we know this dance, right? Off to Ibrance/Femara, which would have been great, had it worked, and not FUBARed my liver. When they told me, I was a complete ninny. I fell to the ground and wept, folks.
Hello, Halaven. I did 7 cycles and had a complete response. But, the SEs were hard, so I took a little CMF vacation. Then I went back on Halaven. In hindsight, the SEs weren't so horrible. It was my first go around with anemia, and the SOB and fatigue messed with my head.
3/2018: Radiation to left hip.
5/2018: DVT in left calf. MO's notes say extensive DVT, but that isn't how I remember it. Buuuut, I could have been crying again. The DVT occurred because I'd had a vitrectomy, and you have to stay in the same flipping position for 7 to 10 days while the retina heals. Thank the Universe that DS was home. I remember being woken up by a shouted "Resume the position, Mom." According to the eye doc, my eye healed beautifully, and you can blame the kid for that.
After a year of trying to figure out why my gallbladder hurts so damn much, when blood work shows nothing, and PET/CT shows nothing, it turns out that my bone disease is shy, and will only consent to be imaged by MRI. We do that, and - Wow - I have extensive bone disease in the thoracic spine. T3 to T10 is throughly zapped in ten sessions. It's done a great job at resolving the pain. One vertebrae is so messed up, it is almost transparent on the image.
But, what we can all guess is that Navelbine was sleeping on the job, and let the cancer mess up the spine and liver.
TL;DR - MBC patient. DXed 2012. Treatment History: Arimidex, Tamoxifen, Weekly Taxol, Faslodex, Xeloda, Ibrance/Femara, Halaven, CMF, Doxil, Navelbine. Some radiation along the way. One platelet transfusion, recently. Starting the week after next, Gemzar/Carboplatin. If I don't respond, I am in liver trouble.
I guess my big questions are:
1. How do you like Gemzar?
2. Will I go bald? I don't mind, but I could use an excuse to get some cute hats. What are the notorious SEs?
3. I think my dosing schedule will be week one: Gemzar, week two: Carboplatin, week three, Gemzar. Lather, rinse, repeat. There was talk of taking week four off, but I'd rather do that only if SE's warrant it. In the past, if I take a break, it tends to mess up my numbers.
Thank you so much for reading this great wall of text. I've never been this scared before.
Jennifer, the nervous
AllyBee: How did the scan results come out?
DianaLynn: Do you have another infusion set for tomorrow?0
SchnauzerMom Member Posts: 75
May I join in? I've not yet had Gemzar, but I am interested in your experiences because my oncologist has mentioned it as a possibility. (I'm heavily pretreated like you, Jennifer, and if/when Verzenio does not work, Gemzar willl be it.) I'm hoping for the best for all three of you and will continue to follow you on this thread.0
Scan results were good... I think. No obvious cancer but the PET scan tech rang me because there were some weird things. My thyroid is enlarged which my MO said could be from chemo but we will check my levels next blood test. My teeth/jaw really picked up the contrast but I've had a wisdom tooth playing up so hopefully that's all it is. Getting my wisdom tooth out Thursday so going to ask my dentist to investigate a bit before he rips anything out. So I'm holding on to NED status by my fingernails.
In terms of side effects, my gem/Carbo week I felt a little off, but not really sick. The next day I'd feel flushed and my face would be hot. By day 4 I would feel a little more tired than usual. The gemcitabine week sometimes I'd feel like I was getting the flu.
My main issue was my blood counts, mainly platelets. I had to delay treatment quite a few times. I also started having issues with my liver function, I felt fine but my blood test showed it was off. It would fluctuate to just outside of normal afyer the gem/carbo week and then slowly recover. This didn't happen until after about 3 months.
Hope this helps some, feel free to ask any questions, I found there was not a lot posted about this treatment.
pboi Member Posts: 148
I was diagnosed with extensive liver mets last August. I've been on Gemzar Taxol since September, so almost 4 1/2 months. I have Gemzar Taxol on week 1, Gemzar only week 2, then have week 3 off. On my first Gemzar only week, I came down with a rash on my groin and armpit areas. I tried some Claritin which seemed to clear it up I think, but the rash cleared up in a week and never returned. I do take Claritin the day before my Gemzar and a few days after now. I've been lucky my RBC, WBC, and platelets are holding up well. I feel a little extra fatigue 1-2 days after infusion, and a little nausea for a couple days, but otherwise feel pretty great. Last CT scan at Xmas showed 50% decrease from original very large tumor size so happy it's working!
absolutely! I’ll take all the help and support I can get!0
yes- my second Gemzar infusion will be Monday!0
I did my first Gemzar/Carboplatin infusion today. It went smoothly. They read me all the side effects, and the ones that seem most daunting are the nausea, and the blood count suppressions. There were at least two anti-nausea drugs in the pre-meds, phenergen and aloxi (I am sure I don't have those spellings right). Are they why I feel like I could go to sleep for a week right now?
My spouse has to go out of town till Saturday for work. The nurses said that the nadir will come ten to fourteen days after the first infusion. Have you guys found any differently? I'm in a situation where we have no friends* or family to call on if I find myself in a bind. I do have wonderful neighbors, though. Is there anything I should be on the lookout for? Anything I need to be cautious about?
* I have one true friend of the heart here, but she has MS, and I try very hard not to lean on her for support. She needs it more than I do!
All fingers crossed. I really need this chemo to work, or I'll be in official liver trouble.
They give me Zofran for nausea. I’ve had two infusions now, I’m on my week off. I get my treatment on Monday and I’m pretty wiped out Tuesday, Wednesday, and Thursday!0
That could explain why the guys are packing for the big trip, but I'm on the sofa, generally waving at things.
I hear you! This is my first week off and it was nice to be out of bed!0
Hi. I'm joining you starting next week. Doxil didn't work AT ALL. Now I need to get a port for the first time in over seven years. NOT looking forward to that. Doc says I won't lose my hair. True? He says it's very tolerable...even more tolerable than Doxil. Not sure if I believe him or not. Anyway, sad day for me. I'll be posting here as I go.
Portplaced today...it wasn't so bad. But I'm pretty sore right now. Tomorrow I start Gem/Cis.
I was sore for a few days! Some folks have no pain at all. Wishing you all the best!0
I’ll also be starting this soon it looks like. Any word on the hair loss? They said I would lose it on the Halaven, but I’m apparently stubborn through and through (unfortunately this includes my cancer) and no hair loss after 4 rounds...not even thinning -knock on wood- but with another hair loss treatment paired it may be a different story.
Sunset, ports aren’t too bad. They suck at first since the chest is still sore from surgery so when they went to access mine it hurt like a MF even all numbed up. If you ever have to go to the ER or anything having your port accessed is way easier to sleep with than an arm IV. I’ve had mine for a few years and you can’t really even tell I have one.
Hope everyone is doing well & hanging in there0
I had my fourth treatment today and so far no thinning.0
Woohoo, dianalynn. That's great to hear!
Parry, I hope you don't lose yours. My ONC says 50/50, but the handful of women I've come across have not lost their hair on gemzar.
I do actually like my port. Makes chemo a lot more comfortable. I've only had one treatment so far and the only real SE I have is that I love to sleep. I dont even feel bad. I just want to sleep....like it's the best thing ever!
interesting . My WBCs were low, as expected, so you know how you have to go back to get your nuelasta shot the next day? Well they gave me a little plastic "patch" that kinda looks like a small digital toy and stuck with tape to my arm. It inserted a needle and small cathiter under the skin. The needle retracts and the cath stays in. In 24 hours it will go "off" As in KABOOM! And the medicine will start a slow 45 minute drip into my skin. I can then remove the plastic pod and viola!
Do y'all do that? It's been about 7-8 years since I have had nuelasta , so this is news to me .
Sunset I had the neulasta shot while on AC and withthe little automated thing I think you are getting. It’s interesting. I had a hard time sleeping with it so worried I would mess up the needle. Beats going back to the dr! Is Gemzar a long infusion? My Halaven only takes 5 minutes and I was liking the shorter days.0
I was at the hospital for 6 hours today all in total.
All the pre meds take about an hour and a half. The Cisplatin takes about 45 minutes, the gemzar takes about 20, and then another 45 to flush.
I'm worried about rolling over onit when I sleep aNd knocking it off. Hope I don't.0
That’s not too bad of an infusion. I can move around a lot when I sleep and I love to sleep on my side which was why I was worried. Never had a problem from it though. I think as long as you are mindful you’ll be ok. It does take some getting used to though for sure. It always amazed me how that little box fit all the things necessary to inject, medicate and time an infusion. Oh, do they have you on allergy meds for the neulasta pain? I grew 1/2 and inch while on it from how it stretched my bones. Glad for the height, but without the allergy meds the pain was some of the worst. It did keep my numbers clinging by a thread for each AC infusion. I hope you have smooth sailing0
KPW3 Member Posts: 127
Sunset, I had one of the devices on the backside of my arm. I totally forgot it was there, got into the tub where it was submersed for some time and it still worked just fine! I was quite impressed.0
Didn’t get the Gemzar today, but my MO is adding Cisplatin. Next week should be the start of these. She said they were a tough pair to tolerate.0
I'm on that combo. First week was easy. Second one for me, a little rougher. But now I get a good break.
I won't mind if it works0
I’m on that schedule now and am glad to keep it. It’s so nice to have that week off. Might just be thankful for a different schedule than the every other week, but still0
well, after five cycles of Gemzar, I’m done with the drug. My tumors are already growing in size and I’m running high fevers. Hope you all have better outcomes than I did. Thank you all again!0
That is a massive bummer. What is next?
Dianalyn, I'm so sorry to hear that Gemzar didn't help. Please keep us posted as to where you go next.
they are putting me on a drug called navelbine . Have you ever heard of it?.0