Mar 19, 2019 08:51PM pboi wrote:
Jennifer, so sorry to hear about the platelets. Hopefully a few extra days of a break will help them bounce back? But yay for normal liver labs!
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 61 - 90 (130 total)
Mar 19, 2019 08:51PM pboi wrote:
Jennifer, so sorry to hear about the platelets. Hopefully a few extra days of a break will help them bounce back? But yay for normal liver labs!
Mar 19, 2019 09:10PM pboi wrote:
Just so not to confuse anyone, Jaylea and I are on a Gemzar/Taxol combo, so no need to ice if you are doing Gemzar only. 🙂
Jaylea, I only ice week 1, when doing both Gemzar/Taxol, and don't ice week 2 when doing Gemzar only.
I start icing 30 minutes prior to the Taxol infusion. For my hands I freeze 2 plastic water bottles. I wrap a pillow case around them and hold them during the infusion. I switch water bottles about halfway through my 3 hour Taxol infusion. For my feet, I bought the NatraCure Cold Therapy socks from Amazon. I've also seen people tie ice packs or frozen peas to their feet. It's important to keep the feet cold, and my socks stay cold about 45 min to an hour before I change the packs. I continue to ice 30 mins after Taxol (which is when my 30 min Gemzar infusion is running). I also have ice chips in my mouth during Taxol in hopes it helps minimize the little bit of taste changes I get 2-3 days after Taxol.
I bring my own supplies and use the freezer at my facility. My facility, Kaiser, has an ice machine and plastic bags you can use if you don't have your own supplies.
Mar 20, 2019 10:22AM - edited Mar 20, 2019 10:23AM by blainejennifer
It is my choice to not get Neulasta until I absolutely need it. It can have tumor proliferating abilities. I had it frequently for primary diagnosis in 2006, and hated it. That feeling of an elephant sitting on your chest and the long bone pain? Yuck.
However, if MO sat me down and said I had to do it, I would. They haven't yet. Fingers crossed.
I am totally stealing your line: Pick an appropriate response. Very funny!
Mar 20, 2019 01:31PM ABeautifulSunset wrote:
gotcha on the taxol. I didnt know it required icing.
Jenn, hope your white blood cell count rises and you don't have to deal with the nasty neulasta.
Mar 26, 2019 12:12PM Jaylea wrote:
Hi gang, just checking in from my first paclitaxel/gemzar infusion Friday. Infusion day went off without a hitch. The Benadryl made much of it hazy. Someone mentioned swapping out the Benadryl for Claritin so as not to be so woozy, and also to allow for better sleep the evening of treatment. I asked the nurse if I could and she said yes. So I will do that next time. Day 2 was ok, a little nauseous, but Compazine helped. Day 3 I felt like I was hit by a truck - nauseous, headache, body aches and pains, and feverish. Yesterday and today are progressively better. Anyone have a favorite anti-nausea? Is Zofran better than Compazine?
Mar 26, 2019 01:27PM ABeautifulSunset wrote:
compazine is actually stronger than Zofran. Ativan is the strongest, but will knock you out. I have found that edibles high in THC will do the same thing, but also make you a bit high...and help you sleep. Ginger teas, sodas and chews also help a lot. And stay super hydrated. The more hydrated, the less nausceaus.
Mar 26, 2019 02:02PM pboi wrote:
Glad to hear your 1st infusion went ok. That might have been me mentioning swapping Claritin for Benedryl. I wanted to be able to drive home from my infusion and sleeping after chemo because of the Benedryl made sleeping that evening a challenge. I have taken both Compazine and Zofran. Compazine works for me, but I don't like it as much because it makes me sleepy. Zofran feels like it's more effective for me. I'm lucky the nausea I have is very minor and a little bit of ginger helps me get over it pretty quickly. I hear you on the day 3 steroid crash-hit by a truck feeling. For me it lasts days 3-5, but over time I've learned to manage it better. I definitely second what Sunset says about the hydration, drink, drink, and then drink some more. I had headaches in the beginning especially after infusion, but now I drink A LOT of water now and the headaches have gone away. The increased water (along with walking a lot) has helped me keep constipation at bay too. Good luck with the Gemzar only this week right? I love that there is no steroid crash this week (in fact I had my Gemzar this am), but will just have a tiny bit of nausea and a little fatigue this week.
Mar 28, 2019 12:10PM ABeautifulSunset wrote:
ugh. I am hating this treatment! I mean, I guess it could be worse, but I feel like crap more than I don't. I feel like I'm dying all the time. Waaaaaa!!!
Apr 2, 2019 05:20PM blainejennifer wrote:
Gemzar is beating my platelets up. I should be starting Cycle 4 week one, after missing Cycle 3, week two, due to low platelets. But, they are at 77,000, not high enough for treatment.
My lab values are still improving, so it's working for me, but - yikes.
How has it been treating everyone?
Apr 4, 2019 06:43PM CaliforniaKat wrote:
Thank you for sharing your experience on Gemzar. I had my second session and it is wiping me out. I had to cancel on Monday and return on Tuesday because my platelets dropped to a concerning level. I hoped I could skip nuelesta because of SE.
Did you have a drop in platelets? How to you deal with the headaches and achyness?
Apr 4, 2019 08:13PM - edited Apr 4, 2019 08:13PM by ABeautifulSunset
On my "off" week, meaning no treatment this week. Definitely feeling better for it. Next week will start my fourth cycle. So far WBC has been just high enough to continue. I get the neulasta injection once per cycle after the second infusion. It had not yet caused me any particular discomfort. Hope every Ian getting thru it and getting good results.
Apr 4, 2019 08:37PM pboi wrote:
I'm on Gemzar/Taxol and it's going well for me. So sorry to hear about those dealing with low platelets. I'm somewhat of an oddity I think, as I think the Gemzar is causing an increase in platelets for me.
Headaches were an issue for me when I first started chemo, but I've increased the amount of water I drink now, and they've gone away now. So for me they were caused by dehydration.
Apr 5, 2019 02:09AM blainejennifer wrote:
Oh boy, do I have a drop in platelets with Gemzar. For the first cycle, I managed to keep them high enough to get treatment in second week.
Second Cycle, I had to have a decreased dose for the second week.
For the third one, I couldn't get treatment at all for second week.
I was supposed to start fourth cycle two days ago, but platelets were too low to get treatment, so I've had to push it back a week.
They tried to give me a platelet transfusion, but I had a bad febrile reaction. If we do that again, I'll just have to have pre-meds. I've read that platelet reactions aren't that rare.
There is no secret trick to getting the platelets up. I've read everything, everywhere, and haven't come up with anything. If any one has any hints or tips, please tell me.
Other than the platelets, Gemzar is working great. Even with the missed treatments, all my lab values are in the normal range, and TMs have gone from 1600 to 268.
Apr 5, 2019 07:09AM nbnotes wrote:
Currently on Xeloda but had some progression. We are giving it 1 month on a higher dose b/c of having missed some doses due to illness. My MO mentioned this as a possible next step, and I want to be prepared / knowledgeable when we have that discussion. Am I correct that it seems like a mixed bag a bit in regards to side effects with fatigue & nausea along with hair loss being most prevalent? I know the neulasta injector has its own issues with side effects as well.
I am still working full time as a college professor, but I only teach a couple hours a day with office time in between. Would that be doable? My insurance is through my job so I really need to keep working if at all possible.
Apr 5, 2019 08:28AM ABeautifulSunset wrote:
nb, I have not lost my hair, but I believe some at least get hair thinning. The platelet thing seems to be a bugger, as well, although (knock on wood) not for me yet. I do have pretty bad fatigue and really bed nausea and vomiting, but I have always had a sensitive stomach. I threw up during almost my entire pregnancy....so I'm prone to that.
Another drug to consider is Doxil. It's a much easier treatment. Infusion only once a month. Didn't actually work for me, but it was worth a try. I believe BlaineJennifer was successful on Doxil for quite a while. No hair loss there either.
I hope you can get more time on X. That's what we all need....more time.
Apr 8, 2019 07:21PM ABeautifulSunset wrote:
Went to have chemo today and they sent me home. Tumors markers still climbing after 4 cycles. He's says I'm done with that. MRI tomorrow, PET next week.... and then, who knows.
Apr 9, 2019 11:41AM - edited Apr 28, 2019 01:18AM by ann273
nbnotes, have you looked at Alisertib or Alpelisib (I believe this may require that you kave a P13k mutation and not have FGFR mutations)? It looks like there are some of us on here that did well on those two treatments for a bit. It also gives you some time before moving on to ivy chemo.
Apr 13, 2019 12:19PM Jaylea wrote:
Yesterday was cycle 2, treatment 1 of paclitaxel / gemzar. Knock wood, this round is going better for a few reasons. First, we stabilized my feeding (I'm on a peg tube) and I started getting regular nutrition so my weight has leveled off and I'm even up a pound. Next, I switched out the Benadryl for Claritin on the pre-med. I've got a bit more of the steroid jumpies, but much better than combined with the Benadryl loopies. And lastly, thanks to some good advise on another thread, I eliminated Compazine from my anti-nausea tool kit. Right now I'm taking low dose Reglan and have Zofran as another option. Oh, and I got a port placed and they accessed it for the first time yesterday. OMG, what joy.
ABeatifulSunset, any results yet from your scans? I hope you get some answers soon and are comfortable in the meantime. Sending prayers to you, love.
Jennifer, all my platelet research was the same as yours - there's no supplement, diet change, or exercise that affects it directly. Although I suppose you can make the argument that doing all those good things gives your body the best environment to recoup.
Apr 13, 2019 04:46PM ABeautifulSunset wrote:
Thank you for asking about my scans. I had the MRI last week and it showed no change in my liver...not better, but not worse, as we would have anticipated due to the rising CEA. I still have my PET next week, which may show some increased uptake. All in all, I've been pretty relieved. PLUS after four cycles, I am SO HAPPY to be on a chemo break. I've got my energy back and I feel like my old self. Gonna savor this for a while, while I can.
I also loved my port. It's one of those" why didn't I do it sooner" things.
Apr 15, 2019 02:14PM pboi wrote:
Jaylea...So glad to hear that this cycle is going better for you. It took me a little while of trial and error to figure out how to manage the side effects, but once I figured out what worked for me, I felt a lot better. I'm on cycle 11 of taxol/gemzar now and scan next Friday. So nervous. But off to vacay this week and looking forward to some fun and trying not to think about this for awhile, and will scan and deal with whatever comes next when I return.
Jennifer...Hope the platelets are bouncing back up for you, and you're able to get back to Gemzar this week.
Apr 18, 2019 11:50AM Jaylea wrote:
Sunset, glad to hear the break has given you a nice lift in energy, just in time to enjoy some vacation time.
Pboi, you'll be in my prayers for good news scans tomorrow. I'm still amazed that you've done 11 cycles. While treatment # 2 was definitely better, I'm pretty much reduced to bedrest and not much else. Thank goodness for podcasts and Netflix.
I have a question about labs, specifically ALT. I'm new to liver mets, have one small spot. Since being on this tx, my ALT has gone from 11 to 42 to 125 and yesterday at 177. Should I be freaking out? Or is this just my liver responding to the treatment and/or healing?
Apr 18, 2019 01:42PM pboi wrote:
My ALT rose from the 40s to 138 after Gemzar/Taxol #1, after Gemzar/Taxol #2 it was 104 and after Gemzar/Taxol #3 was 44. My liver function was compromised in the beginning by my large tumor and then having to process both chemos made the ALT rise. As my liver tumor shrank, and my liver function improved, it was able to process the chemo better resulting in lower ALT levels. My ALT levels continue to fall after each successive cycle, and after my most recent Gemzar/Taxol #11 is in the 20s. Both Taxol and Gemzar, I believe, are known to raise liver enzyme levels. I have had Taxol alone in the past, before liver mets showed up, and even then with a healthy liver, my liver enzymes went up after treatment. When Taxol was finished, my liver enzymes returned to normal. I would definitely be watching the ALT numbers, but I don't think it's cause to freak out yet. I hope your labs will come down as mine did, as the chemo continues to do its job.
May 14, 2019 12:54PM Jaylea wrote:
Hi all, I just finished cycle 3 of paclitaxel/gemzar and wanted to provide an update. Cycle 2 was easier than cycle 1, but cycle 3 was between the two. More nausea, body aches, headaches, and fever. I got up to 100.6, but wasn't about to slog on down to emergency. I just let my body take it's course and the next morning fever was back to normal. But, done is done, and I'm looking forward to regaining strength and energy.
I had a CT and bone scan yesterday and should get results tomorrow. I have an appointment with my MO next week to discuss next steps. In the meantime, trying to remain optimistic about the results. I'm feeling better and my MO said this combo is the strongest presently available. So it's got to work, right?
Sending hugs to you all ~
May 30, 2019 10:40AM Firni wrote:
Hi all. I haven’t been to this site for a long time but now stage 4 is more of a reality for me than it was almost 5 years ago when it became metastatic. I’ve been on everything in the book in the past 5 years and just started gemzar last week. SEs have not been bad EXCEPT for this rash!!! I saw a different onc this week, ( mine was out of town.). He said they don’t pretreat for rash with gemzar any more coz it doesn’t work. Well the nurse gave me 8mg of dex and he was right. It didn’t prevent the rash. I didn’t see anyone else post here about a rash but if anyone has any ideas for relief, I’m open.
I was originally diagnosed in 2008 with stage 2 ILC. I now have lung Mets and chest wall lymph node Mets as well as skin Mets. The skin tumors have been my indicators since my tumor markers don’t seem to reflect realty.
I’ve had 2 infusions of gemzar so far but no change in the skin tumors yet. Fingers crossed
May 30, 2019 11:33AM blainejennifer wrote:
Update on my dance with Gemzar: When I can take it, it is a fabulous drug. It worked immediately, and made my TMs drop like crazy, and did great things for my liver values.
Please note the "when I can take it". They can't treat - at all - unless my platelets are 80,000 or above. That has been a problem. So, I've gone through a few 4 week periods without any treatment, and when I can take it, it is a partial dose.
As you might expect, in that scenario, it's not working so great for me anymore. Granted, it has kept the various numbers from skyrocketing, but I'm a little green/yellow looking (family and nurses swear they can't see it), and I've developed ascites.
Yes, I have a fluid baby. I didn't even know what was going on because I present differently than a cow does. Their ascites are squishier. Mine are way low, and quite firm. In two weeks, I've gained 20 pounds of fluid weight. For the first time in my fat life, I'm an olive on toothpicks.
Tomorrow I meet with the MO to find out next steps, said the heavily pre-treated patient with no small amount of fear.
May 30, 2019 11:43AM pboi wrote:
I was on Gemzar/Taxol, and it worked well for me, and I was able to drop the Gemzar and just on the Taxol now. My first two infusions of Gemzar were uneventful. However beginning with my 3rd infusion or so I started to get a rash near my armpit/groin and abdominal area. Hydrocortisone helped the itching. The rash continued for the next about 4 infusions, and then it started to go away and I continued Gemzar for another 5 months with no issues. I'm guessing my body had a reaction to the Gemzar, but over time adjusted.
May 30, 2019 02:01PM Firni wrote:
Thanks pboi. I hope my body can adjust too.
Jun 1, 2019 12:07PM Jaylea wrote:
blainejenner, I'm so sorry to hear you've developed ascites. I am with you on worry train, as it seems my options are limited. I'm sending massive prayers your way. All the best~JL
Jul 30, 2019 07:25PM marianelizabeth wrote:
It is nice to see some familiar names here despite the fact that there has been no recent posting. I was on Paclitaxel for 9 cycles but progression seems to be happening despite scans not showing it. We just got a PET scan machine up and running this month in Victoria so I will have one ASAP. I have metastatic breast cancer with a tumour entangled with the neurovascular bundle of the brachial plexus that causes pain that has worsened over the past couple of months. This morning my oncologist ran through the options for now and decided on Tamoxifen. However after consulting with colleagues the decision has been made for me to start Gemcitabine next week. Although I saw something coming this does scare me. Having googled it briefly I started to see survival rates survival rates. Yes I know that I should not Google especially when it is scary stuff. I have never asked about survival but I think I will when I see my oncologist next.
Jul 30, 2019 09:53PM pboi wrote:
So sorry to hear that you’ve progressed on Taxol. Praying that a PET scan will help give you some answers. I was on Gemzar with Taxol for 8 months. I would get Gemzar/Taxol together week one, Gemzar alone on week two, and I had week three off. After good scans at the 8 month mark, I dropped the Gemzar and now and am just on weekly Taxol.
I had a good experience on Gemzar, it was so much easier than Taxol, mostly because there is no steroid pre-med. I only took Zofran as a pre-med on Gemzar. Initially I got a rash on Gemzar, but that subsided after a few cycles. Headaches were also a problem, initially but I eventually figured out I was dehydrated, so be sure to keep hydrated. I was very fortunate that my platelets held steady, as that seems to be the biggest problem for people on this chemo. I had a little bit of nausea here and there, and little fatigue, but otherwise this was overall a very easy chemo for me. Praying you have the same experience.