Navigating Navelbine
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That sounds about right to me. I get my infusions on Thursday evenings, so if/when I crash and can’t power through (usually) I can, it’s over the weekend
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Hi Jennifer,
How are you feeling? I am keeping up with your Navelbine experience as it’s one I will be closely looking into and you always provide such great insight. Can you tell me the dosing schedule? Just had a CT scan last week to see if Halaven has stopped working. I know my MO will be considering a few, including Doxil, Navelbine, CMF and maybe Taxol or Taxotere. Appointment is on Wednesday. I certainly feel my options are starting to dwindle, unfortunately.
I hope Navelbine will be a good, long treatment for you! Hang in there.
Thanks, Southern
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Hi all,
After 2 visits to the ER and an appt with my ONC - I am off navelbine! I lost my appetite, got dehydrated and set off a chain reaction of events I don't need to do again. So 3 + weeks later I still have almost no appetitie, I am forcing my self to eat anything. Has this happened to anyone else? How did you jump start your appetitite? I've tried cannibas oil, no luck!
Thank you!!!
Nel
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I’m in week 7 of pill form Navelbine & Xeloda combo. I take the Navelbine Mon, Wed & Friday. First 3 weeks were easy but the fatigue and nausea is getting worse, and I have no concern about the warned constipation side effects as am trying to manage explosive diarrhoea instead.
Upping my nausea pills to try and get it under control and napping on my desk by 3pm. My 9 year old is being a superstar and helping with dinner prep as I have no interest in food, only eat to take my pills.
Feeling rather despondent about it all today. Counting sleeps till cancer marker test on the 16th because it will all be worth it if they’ve gone down!0 -
Southern,
Welcome to Aunt Jennifer's Amazing Chemo Collection Reviews!
Navelbine: I've finished one whole cycle, and I honestly don't know how it is going. MO has me on three on/one off. The first few days after the infusion, I feel pretty good. I think that's the steroids talking, but the bone mets could be resolving. On the other hand, I think I'm having a Huge gallbladder attack, and it is sore as a boil. I still have hair.
Doxil: I loved Doxil. One infusion a month, and no real chemo crash. No hair thinning, no SEs at all, actually. It never pushed back the mets, but it kept them stable. I had to wave good-bye due to progression, and some cardiac wonkiness.
CMF: This is the infusion form of Xeloda, and MO recommended it as a break from Halaven as it is milder in its SEs than Xeloda itself. I had six months of stability on CMF, which is great as I'd already gotten 14 months out of Xeloda three years ago. It shouldn't have worked, but it did.
Taxanes: Everybody gives IV chemo a bad rap, of which the Taxanes are the first line poster child. Taxol saved my life. When I was first diagnosed, MO tried Tamoxifen, as I was on Arimidex when the mets developed. Well, the Tamoxifen was like pouring gasoline on a fire. I lit up like Holiday on Ice on the scans. MO said that it was time for Taxol, and I pushed back a little - What about antihormonals? Oh, my precious hair! But, MO was firm, and I spent 13 months bald as Uncle Fester. I healed up almost immediately, and even though I had infusions weekly, I felt great. Minimal neuropathy, and I could move and do anything I wanted to.
I honestly believe that I'm still here because of my MO's decision to quickly reduce my cancer burden, and let me heal up. I had too many rib fractures to count when we started, as I'd gotten Whooping Cough. Yeah, try that with rib mets. No bueno.
Ibrance/Letrozole: I wish I could get benefit from the anti-hormonals, but I'm one of those hormone positive people who don't do well on them (with the exception of Faslodex - 12 months of butt sticks). Ibrance/Letrozole gave me the gift of liver mets. I'm not grateful.
Xeloda: Pills that you take at home. What's not to love? I'm a skin picker (what's a little OCD between friends), so when the hand/foot peeling started in, I had a little too much fun. I ended up having to wear cotton gloves most of the day, and sleep with socks on. On the other hand, Xeloda worked for 13 months. It's funny, when a treatment works, I get about a year.
Halaven: This is the only chemo that got me to NED. For four whole months! So, to conform to my year theory, I had four months getting to NED, then about four of rising TMs before it was time to move on. Had a little trouble with anemia on this one.
My MO messed up with timing. When we knew Doxil was failing, about six months ago, he should have fired up the trial seeking protocol. Instead, he waited until I was completely done with Doxil. That's when he started the clock on getting a second opinion, and keeping me in wash-out so that I could join a CAR-T trial at Roswell Park. That was three months without treatment, and it turned out I wasn't eligible for the trial, as I'm the wrong HLA serotype. In that time, the cancer was on the march, so I'm pretty uncomfortable, and taking far too many pain meds, and am still in daily pain. Blurg.
Was your CT scan review last Wednesday or this coming one? Opiates have messed me up, so I am lost in time and space.
You have tons of options left! And honestly, most of the CAR-T trials I'm looking at are in Phase 2. Do you know what that means? In about three years, they are going to be accepted treatment protocols. My spouse works in the genomics field, and these immunological break-throughs are the most exciting stuff to come down the line in years. It will be our insulin, our Gleevac.
These are cures, not just holding patterns. We just need to hang in there, and stay strong. The problem with breast cancer is that, on the whole, we didn't have enough cool somatic mutations to aim the T cells at. But, new techniques in scanning individual tumor cells and protein unfolding have opened those doors. Whereas we used to be able to get information on about 15 unique data points for each person's individual pathology, we can get up to 100s now.
Sorry, I seem to have keyboard logorrhea. I blame opiates. Sure hope I'm making sense.
Jennifer
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Hi Jennifer , Karz72 and Nel,
I have had 3 rounds of Navelbine since all oral pills have stopped. So far just constipation and fatigue. Not much appetite and crash after steroids wear off. I didn’t know about a pill for Navelbine. I guess I’ll stay with IV for now. I’m happy to know other ladies are on this. I just hate being tied to IV chemo but if that’s what it takes so be it. Thanks for your run down on the chemo stuff Jennifer. I’ll never forget when you told me how to get through this two years ago.
Hugs 🤗
Anita
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Jennifer - oh my, thank you so much for being so descriptive and thorough in your treatments!
My CT scan results came back last Wednesday and they weren’t good. Halaven has failed after 1 year. All of a sudden I have lymph nodes in my stomach that are huge that didn’t even show up in Feb scan. Several large ones with the largest being 4.7 x 2.8cm. I can tell as they are taking up space in my stomach and making me quite uncomfortable. I’m also thinking I have a lot of inflammation in my body as I have rheumatoid arthritis which has been pretty much kept under control for the last 4 years due to chemo but now my bum left knee is all of a sudden swollen, so that is weird timing given the lymph node findings in my scan.
So, I’ve been on the following treatments in the last 4 1/2 years: Faslodex, Abraxane, Gemzar & Carbopatin, Xeloda, Ibrance/Letrozole, Ibrance/Faslodex, & Halaven. Xeloda worked for 14-15 months and Halaven one year - the rest really never worked. Looking back, I think Faslodex triggered my cancer both times. The reason I went to Ibrance/Faslodex was due to the Guardant360 blood test results saying that combo was the one for me. So wrong! Had progression after 3 months. The hormonal drugs don’t appear to work on me, so sticking with chemo for now, I think.
Now, waiting for my Aug 23rd appointment/consultation at Mayo and on no chemo until I plan to come back home in early Sept. My parents live 3 1/2 hours from Mayo in MN, so they will go with me to Mayo and we will go back to their home on weekends and when Mayo appointments/procedures are all done. Nervous about being off chemo for about a month but hoping Mayo will schedule biopsies, as I’ve requested, to see what treatment will be best. Hard when they won’t schedule any biopsy procedure up front until they see you.
I’ll keep you updated. My MO here is thinking Navelbine as next but wants that biopsy done first! Now in the waiting game
Hang in there, girls! Thanks again Jennifer.
💕 Southern
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Southern,
Going treatment free feels weird, doesn't it? I know Mayo won't schedule a biopsy until they see you, but you could call and ask what the turn around time is once they have seen you, or if they would use a biopsy harvested by your MO/RO now. This little dance is needed if they want to have a biopsy that is part of a wash-out. If not, you could get back on treatment right away, couldn't you?
I was about three months treatment free when all was said and done this past spring, and I could feel the bone mets increase. I'm not a fan. If you feel your symptoms increase, shake the tree until you get some intervention - chemo, radiation, trial, whatever.
Your experience with genomic prediction is not unusual. It's a dirty little industry secret that the databases used to make those predictions are not as robust as they could be. We need more allele data before the mutations = treatment process gets very reliable. At this point, I would never decline a treatment based on genomic profiling. Never Ever.
I also have heard of patients whose disease has strongly progressed while being treated with anti-hormonals. We don't know why yet. Your faslodex is my tamoxifen. More data is needed. If you consider that we've only been cracking the tumor code for about five years now (in a commercial genomic sense), we are doing OK. But, it's not a perfect science yet at all.
Waiting bites!
Jennifer
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Jennifer,
Thank you so much for your chemo review! I am currently on Doxil but the numbers are rising and my last scan showed slight progression. I am looking at a trial out of Dana Farber with HER 3 which I know nothing about, or a trial here in MN with an oral taxane designed for those who failed with taxanes in prior treatment. (That would be me). Otherwise its on to either Halaven or Navelbine. I am getting the Foundation One blood panel -- my MO prefers it to the Guardiant 360 one. Also doing a test called OneOme which is also supposed to help discern which chemotherapy might be the most effective. I also did something called The Greek Test last year but didn't tell my MO because it was through an alternative treatment clinic. When I confessed to my MO that I did this blood panel she said she wanted to see this too. Who knows. Just thankful that for now the tumors in my liver are too small to biopsy.
I am really anxious about losing the freedom I have had with Doxil. And of course losing my hair, getting a port, blah, blah, blah. I feel so behind in the research department. It is just really hard to keep up with everything that is going on.
Southern, Good luck with your meeting at Mayo! I hope they come up with a great plan.
I have had zero response to anti-hormonals and after my little dance with Faslodex and Ibrance my tumor markers went from 350 to 1200! All my liver enzymes were a mess. Sometimes I resent that little positive mark after the ER designation.
Warm blessings,
Kimberly
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and after a short two months with Xeloda and Navelbine I’ll be starting a new treatment when I see my oncologist on Tuesday. CA153 has jumped from around 800 to almost 1500.
Will be the 6th treatment regimen in a year. Really hoping to find something that will work longer term for me
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Just my Navelbine update: I've finished two cycles of three on/one off. For the third infusion, I've been neutropenic each time. The second cycle worse than the first. I could still get treatment, but they reduced the dose.
I can't find any hints and tips for avoiding low WBCs, with the exception of the colony stimulators, which I wish to avoid for the time being.
In case it helps anyone, the neutropenia symptoms I experience are jaw pain, sore throat, a feeling of otitis media, and some perianal irritation. Good times.
How is everybody else doing?
Jennifer
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Hi Jennifer and Anita - well, it looks like I'll be starting Navelbine next Wed, September 5th, after a big progression on Halaven. I was on Halaven for a year and was doing quite well, but in late July after rising tumor markers, I feel like my cancer exploded in my stomach. I wasn't expecting that and now my upper stomach is actually somewhat distended - I had many large lymph nodes on my scan and increased ascites. I'm hoping Navelbine will knock it back some.
I've been off chemo for a month now. Just went to Mayo and did a biopsy this past Monday. I should know by tomorrow if I'm still ER,PR+, HER2- . They sent biopsies off to Tempus to do genomic testing. No clinical trials at Mayo that I fit into. I'm so heavily treated that in general, it will be tough to find one that I qualify for. I really didn't find out anything that I didn't already know. Mayo oncologist concurred with my MO in Texas that Navelbine is a good next chemo. Doxil was his other suggestion. I'm ready to start chemo again as I need to get my cancer under control again. Ugh - none of this is fun.
Do you have any “worse days" on Navelbine after your infusion? What premeds do you receive? Seems like very few women are on this treatment now. Look forward to chatting with y'all and sharing info.
Hugs, Southern (Sheri)
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Cheri,
I'm struggling with Navelbine, to be honest. I have problems with colitis, and after the third infusion of a cycle, I am laid low with stomach blues. I'm learning how to handle it - no food, water only, complete bowel rest for 48 hours. One more cycle to find out if it's actually doing the job!
I'm in the heavily pretreated club too, but I have found that lots of the immunotherapy trials don't really care about that. I will be going to Virginia next week to investigate a Keytruda trial.
For premeds, I get the standard dexamethasone. Navelbine is administered in two separate pushes, where they check the blood return after each push to make sure it's not migrating anywhere it ought not to be. I get treatment on Monday, and it seems that Wednesday and Thursday are the low days on the weekly cycle.
Best of luck with this drug. They are all good if they work.
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Thanks so much, Jennifer, for the info. Always nerve-wracking to start a new chemo. I liked Halaven for the sole fact that I didn’t have nausea. I did have the big D on it, so will need to watch with Navelbine. Days 3 & 4 were my worst on Halaven, so that makes sense.
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Well, update based on Mayo Clinic biopsy: my cancer was ER/PR+, HER2- and now is slightly ER+ , PR-, and HER2+ (3+ which is very positive apparently.) Mayo oncologist said this change only happens 15-20% of the time. Since all my biopsy samples were only from one large lymph node, I may actually still have the old cancer properties too. So, I will be going on both Navelbine and Herceptin starting this next week, as soon as insurance now approves the Herceptin. Both my MO and the Mayo MO were both very pleasantly surprised about this change, as they said Herceptin is a very good drug and it opens me up to more chemo/treatment options now.
We will see. I’m still in a bit of shock as that was very unexpected.
Hope everyone is enjoying the weekend.
Hugs, Sheri
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I’ve been on Navelbine for a little over a month. The nurse told me the constpation would be an issue. Every night my stomach gets so distended and I’m not constipated. Any suggestions to get the gas moving through. It’s so uncomfortable and they told me to try Miralax, gas x and stool softeners. Is there a medication that can be prescribed for this?
Thanks in advance for your info.
Hugs. Anita
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Still on Navlebine here too, since February of this year. I get it via IV infusions into my port on a 3 week cycle. Week 1: See Oncologist, get Navelibine infusion and herceptin. Week 2: Just Navelbine. Week 3: Off from navelbine. Then it repeats. The only "pre-meds" that I receive are basic fluids. I've had a pretty easy time with it. No major side effects from my end to report. I am also on 4mgs of steroids a day to help keep my brain mets symptoms controlled, so that may also happen to br helping keep any side effects from Navelbine from popping up (like fatigue). It has kept me stable from the neck down since I started it, so for me, it has been a good drug. I wish you the best of luck on it too!
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I have been helped by this drug. I hope it works for all of you. My hair thinned but it is still here. I an scared.
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I have been helped by this drug. I hope it works for all of you. My hair thinned but it is still here. I an scared.
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Hi Becs - thanks for sharing. I had my first Herceptin and then Navelbine infusion yesterday after a biopsy done by Mayo Clinic in MN revealed that my cancer in the one lymph node they could access in my stomach was HER2+. Since initial diagnosis of Stage IIIC in 2007 and then Stage IV in 2014, I have always been HER2-. So, at this time, it's possible that my cancer contains both HER2- and HER+ properties.
My question is that yesterday during my 1 1/2 hour Herceptin infusion prior to receiving the Navelbine infusion, I got the worst stomach ache. About an 8 of 10 pain. So miserable. The nurse stopped the infusion for 40 min and gave me more steroids, Benadryl and Ativan. Finally it got better and she resumed the infusion.
Has this ever happened to you? It scared me as I have never had any issues with any infusion previously, and I've been treated a lot.
Thanks for your help. I look forward to keeping up with this thread.
Hi to all. Hang in there, Fraidycat, Jennifer, and Anita. Sorry Anita that I don’t know anything for constipation. I have the opposite problem right now. The big D. Ugh.
💗 Southern (Sheri)
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Hello All- since my initial diagnosis in 2010, I have been on numerous threads on this site & have always found each group to be very helpful and knowledgable. I hope you don't mind all my questions but this new treatment regime was a complete new plan as of yesterday. After a HUGE debacle with my insurance company who repeatedly refused my PET scan scan requests (starting on June 6th), I finally was authorized on Aug. 23rd. Sure enough, like I had suspected all along, my NED status is no longer (although I did have a good 1 1/2 years on Kadcycla). I have two new lymph nodes lighting up and enlarging my the day (so much so they are causing a small blot clot around my port-so now I'm also on a blood thinner as of last night). After discussing several options, we chose to go on Herceptin and Navelbine on a 3 week cycle. So.... I am reaching out to see how everyone has been tolerating the drug, anything i can do to be proactive to counteract SE, has anyone lost their hair (I work in a middle school and I would need to get another wig-my old one looks like a birds' nest!), fatigue, etc. Again, sorry for all the questions... after 8 years of this on again/off again rollercoaster, I like to be as prepared as possible. Thanks so much!!
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Fran, how was your first infusion of Navelbine and Herceptin? Sorry I didn’t respond previously, but I’m probably just a bit ahead of you, so I don’t know the ropes on this combo yet. I had my 2nd infusion (Navelbine only this time) on Wednesday. No terrible side effects but I’m exhausted, no real appetite, and just don’t feel great overall. I’m being kind to myself and taking it easy today.
I have been having some ascites fluid buildup in my stomach this past month and it definitely got worse after my first infusion of Herceptin & Navelbine back on 9/5. (I’m sure my cancer didn’t like the new combo!) I ended up having a paracentesis procedure to drain these ascites this past Monday. I do feel much better. Hoping the combo will now keep the ascites at bay.
Hope everyone has a good weekend!
Sheri
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Am in the middle of my third cycle, and having real gastric trouble. Constant pancreatitis - it's really beating me down. If this drug is working, I'll figure it out.
On the other hand, I'm thinner than I've ever been post baby (baby is 19, sigh).
Jennifer
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Sheri- so far I'm doing OK overall following my second infusion (just Navelbine) yesterday. Just very fatigued today but was able to get up and get out to have some lunch with my son who came home from college to see me
. Last Sat., after my initial transfusion of both Herception/Navelbine, I was down for the count for most of the weekend (Sat. I had NO energy at all and spent most of the day on the couch). However, I was able to go to work this week which was a nice distraction from all this. Definitely some minor stomach issues but nothing too serious. I do hope that your procedure goes well and brings you some relief! Thanks to everyone for their feedback-it is much appreciated!0 -
Thanks, Fran - I already had my procedure last Monday, so I'm doing much better. Glad to hear you are hanging in there.
Jennifer, I am having the big D - assuming that's part of your issues too. Stomach also feels overall queasy. I thought Navelbine caused C vs. D? I guess not for me!
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SS:
Nope, it's D-land for me too. I've always had the opposite trouble.
Jennifer
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Jennifer, do you take any meds for the D? I’m thinking I may need to start, as I don’t think it’s good to have D ALL.THE.TIME.
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SS:
I'm fond of the liquid Immodium. I think it works better than the pill form of loperamide.
Jennifer
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Thanks, Jennifer - appreciate the tip
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Hi ladies - Joining you here; started on Navelbine at the beginning of August. I am doing two weeks on, one week off, and will have second infusion of my third round this week. My main SEs have been fatigue/achiness, some D, some nausea, and a little bit of hair thinning. Worst days for me have been 2 and 3 days after the infusion. Just in the last few days, I have had a little neuropathy. Tumor markers down a little, but not markedly, which worries me a bit, as they are very reliable for me. Too soon to tell if it's going to work for me - scan in a few weeks, so hoping for the best. Would not mind staying on this treatment for a while as it's not too difficult for me to tolerate.
L
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