Navigating Navelbine
Comments
-
Gail...I know about the $$$ connected to neulasta & neupogen. I had a neulasta shot after 2nd & 3rd txs on taxotere & cytoxan in 09, but insurance denied it on my last tx and I ended up getting horrid nose bleeds. They figured it was my last tx so my counts would start going up. Some gals on my chemo 09 board had to give themselves the shot at home since ins wouldn't pay for their centers to give it. I think they're from $4000-7000 a shot..ridiculous. I meet w/my onc on Wed and we'll talk about my wbc situation. Nurse thought they may lower dosage, but I know most of you are on 2/3 weeks on - 1 off, and my onc has it ordered for me every week. We shall see.
Does anyone take omeprazole for reflux? It's what my onc always orders. I haven't needed it yet
Melizzard...Just wondering...are you on the Vanilla Bean cocktail????
OHHHH....I don't have jaw pain but my gums are sore
I had my teeth cleaned in October and am scheduled for 2/20...I've gone every 4 months since first chemo in 09. I'm thinking it may be wbc being low but have read on other boards that osteocrenosis has crept up with cleanings..totally freaks me out. Any info????0 -
RonnieKay - I'm still on 1st cycle and was given an extra low dose to begin with to see how my WBC goes. I'm really hoping they can increase the dose as not convinced it will be effective otherwise. I take Lansoprazole for reflux from being on Xeloda, I'm thinking of trying to wean myself off it as think it's not too bad on Navelbine.
0 -
The Vanilla Bean (cuter than Navy Bean) is really doing a number on me. My RBC isn't rebounding even with Procrit, so I had my first transfusion last Friday. My infusion nurses kept telling me how much better I would feel, but it never happened. I'm so worried it didn't work very well. I see my onc tomorrow before chemo so I guess I'll fiind out. It's to separate the fatigue from chemo and the sleepiness from the anemia. Then, don't even get me started on the constipation. I think it's my worst problem, but I finally realized it and got a new doctor who gave me a prescription to take care of that. So far, so good and I'm on the lowest dose so I think I can survive chemo this time. I just wish my WBC would cooperate.
RonnyKay - I'm glad it sounds as if it's working for you. I hate those neupogen shots, but I hope they bring up your counts. Hang in there!
0 -
Cynthia - what are you on for the constipation? I'm still a bit trial and error to figure that one out. Hope you start to feel better after the transfusion. I've not had one yet, but from what I've heard it can take a few days for you to feel much benefit.
0 -
Gail - the rx for constipation is lactulose. So far, it's great. It a thick, green liquid that tastes like slightly gritty bananas. It blends well in just about anything that you wouldn't mind tasting like banana. It works very gently, but I'm told by nurses that's it's very effective and used with patients having liver issues to keep the colon moving so the toxins don't build up.
My RBC is up to 12 something, so a good jump from 8.7. I started feeling better yesterday, so almost a whole week.
My tumor marker went up so instead of having me switch chemos, he's adding Xeloda to the Vanilla Bean because they sometimes work better together than separately. Sigh. I appreciate not having to move on to a new chemo, but I hate Xeloda w a passion. It's going to suck.
Good luck with everything!
0 -
Cynthia - good your RBC is up and you're feeling better, but sorry about the TMs. I think Xeloda and Navelbine are quite often combined. Havng been on Xeloda recently I can understand your reluctance but I assume you had good restults on it before or your onc wouldn't be wanting to add it to the mix. So far I'm finding the Vanilla Bean easier to tolerate than X, although it's early days.
0 -
Blood counts were good after 1st cycle, so have been upped to the normal starting dose for cycle 2. If still OK will get on to the standard dose for cycle 3.
0 -
Hi everyone!
I will be starting Navelbine on Monday and wanted to stop by and introduce myself, I will be going back and reading the past posts to catch up! In the mean time, my Onc says the worse SE is fatigue. all comments are welcome! My schedule will be 3 weeks on and then a week off.
Thanks
Robin0 -
Hi Robin, looks like you're following me on from the Xeloda thread. I've just started cycle 2 and so far this has been the easiest chemo for me. Get a bit of nausea first day and some constipation, but compared to Xeloda my energy level has improved a lot.
Latest CT scan shows some fluid in the chest wall and activity in a couple of new nodes, but could be a lot worse. Just need to keep an eye on things with the fluid as if it builds up it could put pressure on the lungs and would need to be drained but not much there just now. Also being referred to lymphoedema specialist for arm, thought I would escape that problem when developed secondaries before I had surgery. I think there has been a bit of continuing growth of skin mets since starting Navelbine, but as I was on such a low dose for cycle 1 it's a bit too early to panic. Onc reckons she has plenty more tricks up her sleeve if this one doesn't work.
0 -
Hey Robin,
Welcome! I've been on navelbine for about 7 months now and am doing great. The biggest side effect I have is chest pain/heartburn immediately after the infusion that lasts for about 3 hours, but based on the reaction I get from the nurses each week, this must be very rare.I take prilosec and don't have issues during the week, it is just the immediate time following the push. The only thing that helps is to eat, so I nibble on crackers on the drive home.My counts get wiped out too, so I take 3 neupogen shots each week (neulasta on week 3 to tide me over).
Aside from that, I have a little fatigue, but am still working full time, etc. Easiest chemo I've ever been on, thankfully it is working. Nice to have hair too.
0 -
Hi Gail
I am following you! Not stalking...just following! lol. I hope we both have a long run with this one. Sounds like your Onc is watching you closely. More energy than on X is promising!
Nancy....thanks for the encouragement! I work PT so if you are doing this and working FT, I should be ok!
You've made me feel better!
Hugs!
Robin
0 -
Nancy - that's good you can get shots to boost your blood counts. It's not routinely given here for Vanilla Bean but so far my neuts have been OK, although might change when my dose gets upped again. Yes, it's great to keep hair a bit longer too.
Robin - hope you're doing OK so far and SEs are kind to you. As I'm on the oral version it's nice not having horse pills like on Xeloda too, much easier to swallow.
0 -
Continuing on Navelbine, only side effect is constipation and that may be from one of the anti nausea medications which I only take right before Chemo. Hope Navel keeps working!
Susie
0 -
Susie - good to hear. My main SEs are a bit of nausea on day 1 and some constipation, but it's not too much of a problem so far. I'm a bit fed up about developing lymphoedema as thought I'd be OK since haven't had any surgery so far. I'm assuming it's due to a bit of progression on Xeloda blocking some lymph nodes. Have appt with lymphoedema physio next Monday so not too long to wait at least.
0 -
Hang in there Gail!
Robin0 -
Thanks, Robin. Had my first appt with lymphoedema clinic so feeling a bit more positive that I now have a few exercises to do and will be fitted for a compression sleeve and glove tomorrow. Have noticed a few more skin lesions starting to appear so think I might not be on Navelbine much longer. Since it's been such an easy chemo so far I'm trying to tell myself it's just due to not being on the full dose yet, but will see what onc thinks on Friday.
0 -
Gail
Hope you're skin is no indication! Let me know what the Onc says. I am sitting here, doing treatment number 3. So glad I have next week off!0 -
Saw onc today, but she was just checking the skin mets so no scans this time. Seems to be a slightly mixed picture. Skin more purple than red in places. Had a few new growths on cycle 2. Some older lesions seem to have gone a bit crusty and some of them are bleeding now, so a bit concerned about that. As I've just gone onto the full dose she wants to give it longer to work and will get a CT scan done for next time. She reckons it's trickier getting the dose right for the oral version as harder to work out how much each person will absorb.
Robin, enjoy your week off.
0 -
Good Sunday Morning
I haven't been on bc.org for a few weeks and have missed you all. I asked my onc at my appt last month if she'd seen the news on bc.org about treatment after local recurrence and she said she doesn't read bc.org and that although she knows my diagnosis is fairly new and I want all the info I can get, I do need to give myself a break sometimes. So...I did...and now I'm back..LOL!!! Anyhoo...Gail, your upbeat attitude is so inspirational to me! I'm sorry you're dealing w/lymphedema too, but glad that you've gotten some exercises to do (manual lymph drainage?) & will have your compression garment. I also hope they find the right dosage of vanilla bean for you! I keep thinking how marvelous it would be to get the pill form but it sounds complicated in getting the dosage right. I'm praying the "full meal deal" starts working it's magic!
Nancy...I see you're in Seattle, neighbor! I'm entering month 3 on navelbine and it seems to be working! I thought I'd have scans this month but when I had my onc meeting last Wed, she said all my liver counts are in the normal range, liver enzyme is back to normal and tumor markers are good, so she's waiting until next month. DH and I were so happy and my onc was too...saying navelbine/herceptin/perjeta looks like a good fit for me. Just hearing her say that cleared some very heavy weight from my heart. Just as we all are...I'm looking at many more years of kicking this crap to the curb!!!
Robin...I should just read back farther, but do you have a week off because you then build up your white count? After 3 treatments, my wbc is too low for navelbine so I have herceptin and neulasta, then the next few weeks my count is sky high. I think they're going to start giving me neulasta on the 3rd week so I don't miss a week of chemo, but you already "get" a week off....just wondering
Thinking and praying for all my bc.org sisters!
0 -
Hi Ronnie
That is my treatment plan...3 weeks on Navelbine and then a week off. Lucky me...I got a head cold to enjoy during my week off! Ugh!
0 -
Hi Ronnie, Robin, Gail......
As you know I am all new to this, relapse after 4 years, 2 spots on liver. UGH !!!
I got 2 weeks, one week off, and so on. Only Navalbine. Wondering why you get perjeta as well Ronnie. Am i missing something here.
Last Friday, at my 2nd infusion, big headache, if its from a cold or the chemo, I dont know. Better today, otherwise no issues.
Ronnie, I am soooo glad it seems working, cause i was getting very discouraged reading at many other posts from other Ladies that Navalbine was an " Too easy" chemo to work. Geee, I hope not.
Anyhow, wish you great Ladies a nice week off.
0 -
RonnieKay - you sound pretty upbeat yourself. I like the sound of the 'full meal deal' - will have to ask the chemo nurse if it comes with extra fries! My exercises are just a few stretches just now but seem to help a bit. That's great news your combo is working for you and it's always nice to get a break from scans.
Robin - Sorry you got a cold for your week off. Hope you feel better soon.
Mamita - I'm 2 weeks on, one off as well. Hope you don't get any more headaches on it. I think perjeta is only for HER2+ BC.
0 -
Mamita...I grilled my onc asking if Navelbine/Hercep/Perjeta were going to be enough to make this stuff go away and she assured me she likes it because it works....and doesn't make you look like a cancer patient. I didn't really care what I looked like if it worked but...it IS nice to have my hair (been there, done that!). Besides, she said if it works-Awesome-if it doesn't, there are more choices for other drugs. So...thank the LORD above, it seems to be working. Gail's right, the herceptin/perjeta mix is for her2.
Robin...I had treatment Wed and once again, 3rd time since Jan 10, my white count was too low for navelbine. I asked why they don't just PLAN for me not to get it. Guess they're ever hopeful my count won't go down, but they say it famously does a number on the wbc. So just had herceptin and neulasta shot. It makes me sad, when I know it's working. Hope your cold was a quickie!
Gail...thinking of ya!
0 -
Great news girls! My TM"s dropped 675 points after my first cycle. Scans pushed back to May....started cycle #2 this past Monday. Thank you for all the positive thoughts and thank you Navelbine!
Hugs!
Robin
0 -
WOW, Robin, GREAT !!!!!!!
How was your Monday off, was probably nice not to get to hospital...... I am starting my 2nd cicle tomorrow on Friday.
0 -
It was nice not to have to drive downtown...but I had a head cold...so, it was a quiet week off. Hopefully, next one will be better! Hope you enjoyed yours!
0 -
RonnieKay - I've been told this one's hard on WBC, but have been OK so far, although just went up to full dose this cycle so will see if blood counts are OK for next cycle on Tuesday. Hope you didn't have to wait too long to get the dose.
Robin - brilliant news on the TMs, hope you're feeling better now.
Marmita - hope all goes OK today.
I have a bit of swelling in the groin area my GP thinks is a lymph node, so will have pelvic area included in next CT scan to check it out. Not sure if it's new or I just hadn't noticed it before. Otherwise feeling fairly good and think skin mets are reducing a bit.
0 -
Feeling pretty good after my infusion today. My TM where always pretty low in the normal range, last time at 23.0. Today 21.0. which is ok, but still after one cycle I was expecting a more drastic drop.
hopefully its working ....
0 -
It's kinda funny...every 4th cycle my white count is too low so herceptin & neulasta & all is back to normal. Just seems like it should be part of the plan but...guess there's always hope. They said the same thing Gail...Navelbine famously lowers count. I gave my notice at work that I won't be coming back so am using donated leave until the school year ends...then disability will hopefully kick in
I'm sad, because I liked my job, but I also know it was a lot of stress & 4 am wake ups aren't normal for healing! With tests being good, I don't want to rock the boat!Gail...let us know about the swelling and am hoping skin continues to be better!
Happy Spring to all my Sisters! Gotta run get a wedding shower gift...still waiting til the last minute!!!!
0 -
RonnieKay - sorry you've had to give up working but guess you have to put your health first. I'm still toying with the idea of going back but don't have enough confidence in treatment working long enough to be worthwhile.
0
