Navigating Navelbine
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Hi Lovestosing,
Rant away! I totally get it. I feel the same as you. On other chemos, I would have a few down days and then would be able to function and get stuff done. Not this chemo. I have had issue after issue. I guess it’s not just the chemo, but seems like I’ve had more problems while on this chemo. Last week I got a stomach virus and got sick for 24 hours and then had the big D for 5-6 days. Of course, that was my off chemo week. Had chemo this past Thursday and now I’m back on the couch today. Have a terrible headache and just don’t feel well. I’m so tired of feeling sick and tired. Seriously, I would like to have some QOL.
I will say my first 2-3 months were really, really hard on this chemo, so you are in this trial period where I couldn’t get off the couch at all. I truly hope it gets better for you as your body adjusts a bit. Do allow for down time, as this chemo isn’t for the faint of heart. Keep us posted & take care. 💕
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Thanks Southernsurvivor - you're not called that for nothing!
So grateful to have your support and sorry to hear that things have still not been going great for you.
This is indeed a weird chemo to be on and is taking quite a bit of adjustment. I'll probably have adjusted and then it will be time to move on!
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Yesterday was 13th session, so far labs are good and i have kept the 2 weeks on 1 week off. Wish i felt as good as I do the day after chemo everyday. But the fatigue sets in and I have to keep my strength up because I am still working. My markers have dropped they are down this time to 311. He is ordering a cat scan so fingers crossed for good results. Still have neuropathy in fingers, makes for hard typing. had been taking a joint supplement and ran out. Noticed weakness trying to stand etc....so re ordered and hope that is the reason.
I have chemo on Thursdays and I am good till Sat afternoon and Sunday is def a PJ day.
One day at a time Ladies, my eyelashes are beginning to thicken just wish the hair would start but wigs are easy no fuss
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hello, was just reading all of your posts. Had my first Navelbine today. Hoping for the best
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Dianalynn - I wish you much success on Navelbine!
It looks like I’ll be leaving this thread as no more Navelbine for me after 6 months on this treatment. I’ve had such a hard time on this drug and after CT scan results, I’ve had some progression, so time for a new treatment. I think I’ll be doing low dose Taxotere with H&P. Not too excited about it honestly, as my hair has finally grown back after 6 months on Navelbine, and I’m tired of losing my hair!
Good luck to all of you. 💗
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I've been on Navelbine since November 2018, get it 3 weeks on, one week off, along with Herceptin & Perjeta at one week on, 2 weeks off. My white counts have dropped and sometimes get a shot of Zarzio. I'm trying to continue working, but I am just so tired, I can't do much at night or weekends. I'm also having some swelling in my right shoulder area that I think is getting worse but my Onc thinks is getting better. My next PET scan is in June, so I guess I'm on this treatment until we see results of next scan. It's just very depressing that I don't have energy to do anything. I think the only positive thing about Navelbine is that I'm not very hungry and I've lost a few pounds.
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mic96, do you think all of your fatigue is caused by the Navelbine or is it a combo of the three meds?
It looks like I will likely be starting Navelbine on Thursday. Does it cause hair loss? The drug information sheet states that it does but I know many of those note hair loss when it is not a common symptom. It is so unfortunate we do not have access to oral Navelbine here in the US. I wish I could get some from the UK or somewhere else.
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I think the fatigue is due to the Navelbine as I've been on Herceptin & Perjeta for 2 years already and did not feel this tired. Navelbine does not cause hair loss, just hair thinning.
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Thanks for your response, mic96!
I get my port tomorrow and will start Navelbine on Friday now. I have managed 4.5 years without a port - Abraxane, Doxil and Halaven all with no port. However, my MO finally drew the line at Navelbine because it is a vesicant. My MO is also giving me Tamoxifen with Navelbine. I found some articles indicating that Tamoxifen has some synergistic effects when taken with Abraxane.
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I had my first Navelbine today. 10 minute infusion is not bad!
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Hi all Navelbine users. How is everyone doing? I wanted to report I am having a great response after two cycles. My AST and Alkaline Phosphatase have returned to normal. My ALT went from 3+ times normal to a few points high. I am taking it in combination with tamoxifen. I think the tamoxifen is helping my bone mets and Navelbine is helping the liver. Just a guess, no science behind that. I notice I feel slightly wiped out in a flu or hangover type way for two days after infusion along with some general bone pain throughout my body but then feel pretty good after that. However, today was day 1 after infusion and I was out and about all day with no problems.
For anyone else on Navelbine, how are you doing? How long have you been on this treatment and what are your side effects?
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JFL, I start in a week. They want me to cold cap. Have you lost your hair? I feel like I'm following you... many of the same past treatments and y90, now Navelbine (I'll be taking it with Xeloda). I'm most worried about fatigue. I'm still wiped from the y90. But I have to start. Been off treatment too long. I am also interested to hear from people on Navelbine. Anyone out there?
Sunset
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Sunset, in 2 rounds (2 weeks on, 1 week off), I haven't had hair loss. I have noticed a slight bit more shedding on some days but nothing major and nothing that makes a visible difference. I cold capped on Abraxane and Halaven but didn't consider it for Navelbine.
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Hi JFL. Thanks for the update. I am navigating the side affects while getting ready for my Y90 procedure. I am curious your doctor has you using tamoxifen as well. I ask my oncologist about an estrogen blocker while I am on treatment. However she said no! Which doesn’t feel ok to me. Wondering if this is a new procedure your oncologist is doing? Continued success!!!
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Thriver, essentially, I am past all standard treatments and my MO is in the trial and error mode, not expecting anything to be a slam dunk. Given there is no "next step", he is pretty open to future treatments. One of the main reasons for the tamoxifen, I believe, is that I was NEAD of bone mets for over 4 years until I recently did a trial of a drug that did not work and resulted in me being off effective treatment for a long time due to two required wash out periods plus the time on the medication. I suspect the reasoning is to hit the bone met with the tamoxifen as my bone mets had not yet become resistant to any of my laundry list of treatments and likely will still respond to hormone therapy. Some options my MO suggested when determining my next treatment were testosterone and/or tamoxifen + a second Y90 procedure or navelbine. My DH asked off the cuff if I could do tamoxifen, testosterone and navelbine and he said yes to tamoxifen and navelbine but no to testosterone in combination with navelbine. It sounded like a good plan to me. Usually MOs won't start getting creative until you have exhausted all standard of care therapies, although my MO has always been a bit more open-minded and thinks outside the box. I did some research after finding out about my current treatment plan and have found studies about tamoxifen and navelbine having synergistic effects in melanoma. I hope those translate to similar synergies in breast cancer.
Good luck with your upcoming Y90! When is your procedure? How long of a break will you need to take from navelbine before/after Y90?
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I am needing some advice from others currently on navelbine. My mom is stage iv and has recently had to change from Verzenio to navelbine. Her blood counts, esp platelets, were low before her first navelbine tx due to the Verzenio. But mo wanted to proceed. After first tx all bloodcounts dropped very low and she was unable to have second tx. She was scheduled for 3weeks on, 1off. I asked why mo didn’t give anything to raise counts. (Neulasta,etc.?) Mo said no due to it decreasing tx effectiveness. I haven’t heard of that before. I thought maybe he was against it since it was so early in tx and he was wanting to see how she responded to it without the aid of meds. She returned the next week to try tx again. Blood work showed all counts had returned to normal range except for neutrophils (it was 19). Mo thought it would be best to skip week again. Did not recommend any meds to boost counts. I asked about supplements. Ashwaganda, Maitake, etc... He said no. I have been following several threads and it seems pretty common for patients to receive these types of medications in order to continue tx. Does this seem standard? We are very concerned about skipping all these txs. Obviously we don’t want Low counts. But it seems there are things that can be done to help.
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BoyofMom, sorry to hear about your mom's delays. I have recently started ashwaganda, maitake and turkey tail and my low hemoglobin (i.e. anemia), which has been my challenging blood test item for a long time now, has improved significantly and is very close to normal now. I don't know if it works the same on platelets. An MO is never going to "recommend" supplements for liability reasons, unless there have been clear studies showing the supplement works and is safe to take with the other medications the patient is taking. It is highly possible the MO said "no" because the MO has no idea what the supplements are and/or what they do. Take that MO advice with a grain of salt. Although there are no guarantees and no one knows for certain how those supplements will act in my body, I do feel comfortable taking ashwaganda, maitake and turkey tail because each also has been shown to kill breast cancer cells in addition to boosting blood counts. There have been clinical trials at Memorial Sloan Kettering (MSK) with Maitake D-Fraction Pro-X and trials at U of Washington (Seattle Cancer Alliance) in conjunction with Bastyr University (an alternative medicine university) with turkey tail mushroom supplements as breast cancer treatments. MSK and U of WA two of the top cancer centers in the country. There have been some smaller human trials with ashwaganda use in breast cancer to alleviate side effects of treatment and other trials with cell cultures and animals where ashwaganda was used to actually treat cancer.
Another thought - mets in the bone marrow can also impact blood counts, particularly platelets. Doctors rarely test for bone marrow mets but my MO mentioned at my last appointment that when he was a resident at MSK, all metastatic breast cancer patients were tested for bone marrow mets and nearly everyone tested positive. If your mom has bone mets, there could be some activity in the bone marrow as well which is impacting her ability to make blood cells. If that is the case, treatment may help the platelets. Frustrating condundrum we all face - not knowing what will help our situation and what will harm it.
It is rare to give neulasta or the similar drugs in the metastatic setting. I know the drugs that help red blood cell counts (such as EPO) can help the cancer grow. I don't know if that is the same for neulasta but neulasta is generally indicated for short-term use, to raise low blood counts due to one's last round of chemo, and not ongoing use as a mets patient would need from chronically low blood counts. That being said, there are some women on this board who have used neulasta or neupogen at times.
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Thanks JFL! I appreciate your thoughts. I will encourage her to take some supplements. Esp the Maitake. I read that ashwaganda can affect blood sugar levels and I’m afraid that may impact her diabetes. I’ll have to do more research. I just want her to be able to take her txs. She is getting so down about everything.
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Hi everyone! I just started navelbine and was suppose to have 3 injections then 1 week off. When I went for the third injection, I was told that I essentially had no wbc, so I couldn't get the injection. I guess I've been switched to a 2 weeks on; 1 week off. I go tomorrow and hope my wbc counts are up again to get the injection. I normally don't post but wanted to post here to keep this thread going. Sounds like there are a couple of us that started navelbine in the last 3-6 months.
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hey DA97 I completed one 21 day cycle. Day 1 and Day 8 then a week off. I went in for Day 1 of cycle 2 but my wbc was also too low. I'll find out on Thursday if they recovered.
Thanks for bumping the thread I began to think I was the only one on Navelbine.
Quick question, did you lose any hair? My hair has been drastically falling out and thinning. Just hoping it slows down, as I read it wasn't a common side effect on this one.
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Hi Kayla and DA9707!
DA9707, 3 weeks on, 1 off is a tough cycle. I have been doing 2 weeks on, 1 off since the start. I didn't realize that I wasn't on the highest strength course. I don't think I could do 3 on, 1 off even though I have never had much of an issue with my WBC on any chemos.
Kayla, I haven't lost any hair. I believe I may have shed a tiny amount the first few weeks (but tiny to the point it would have seemed normal if I wasn't on chemo). However, nothing after that. Some of my body hair that has been nonexistent for several years has grown back too. Maybe the tamoxifen is stimulating that. I don't know.
I had my first PET on Navelbine/tamoxifen on Saturday and the results were great! I am so relieved. It has been at least a year since I have had a good scan. My liver lesions are shrinking and the metabolic uptake has decreased significantly. My one bone met that was lighting up is now inactive. Praying this treatment works for a good while. It has been very tolerable.
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Great news, JFL. That gives me some hope. Since Stage 4 diagnosis in October I have not been without progression with each scan; maybe this is the one.
I’ve been dropped to 75% I had horrible mouth problems and nausea with first cycle. They’ll add some premeds with this upcoming one. Thank yo
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Hi JFL and Kayla250,
Nice to know there are a few of us on Navelbine. Congrats JFL on you last PET scan. My med onc dr actually said that the standard treatment for Navelbine is to be on it all the time. My neutrophil count was again too low to get treated (2 weeks on; now 2 weeks off). I go back Wed and I'm sure that I will get treatment since my neutrophil count was 0.9 this week and they treat if 1.0 or higher. No issues so far with hair thinning - that's why I chose Navelbine over Halaven, which causes hair loss. I do get Zofran (anti-nausea) right before the Navelbine. I also have an anti-nausea prescription in case, but have not needed it yet. Kayla250 - I was on Ibrance and Xeloda also and neither prevented my liver mass from growing. I guess Navelbine is used for liver mets? Let's hope it works for all of us.
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DA9707, interesting, I have never heard of anyone being on IV Navelbine all the time. Then again, it is not the most commonly prescribed medication and I don't know all too many people who have taken it. However, outside the US, Navelbine is available in oral form (such as in the UK) and I believe the oral pill is administered always on. Unfortunately, although FDA filings were made to pursue oral Navelbine approval in the US, the drug company abandoned the effort as it determined it would not be profitable enough for it given that Navelbine was already generic at the time. So sad. I stopped taking the Zofran with Navelbine and haven't noticed a difference - no nausea. I feel that I don't need Zofran and it causes noticeable constipation. Hoping your ANC exceeds 1 so you can get treatment next week.
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Hi!
I just started navelbine2 months ago-3 weeks on and one week off. I've needed transfusions twice.
This is first time getting the 3 rd treatment . I have felt horrible all but the day after. My head hurts, I' ve been so dizzy that I threw up water on the 2 nd day after treatment and couldn't see the television. The room spun when I moved. I have been very weak. Tomorrow is the end of the week, so I see the doctor. All I have done is sleep and lay on the sofa. I hope it gets better. .My alp and CA15-3 have not changed much. At least I am not the only one with these symptoms. The headache was scaring me. KLee
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KLeeR, sounds rough. I am tolerating 2 on, 1 off well but do not think my body could handle 3 on, 1 off. If the 3 on, 1 off is too much, perhaps you could go down to 2 on, 1 off? I mentioned this in a previous post but you may want to consider ashwagandha if you are having red blood cell infusions. It has been a miracle for my hemoglobin. MIRACLE. I feel like a new person since I started taking it and my hemoglobin majorly improved. It is just shy of normal now after being chronically low for a long time. The color has returned to my face and I have so much more energy.
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HI JFL, i don't post too often, but I've been following your posts since I also have liver mets.
I've been on Xeloda for 9months, but unfortunately the scan showed the progress and I was recommended to choose from 1) Haraven
2) Gemcitabine 3)Navelbin. I still work full time (I get to work at home once a week, but otherwise i need to be in the office)so considering Navelbine might work with least side effect? I think I've read you still work fulltime, so I'm curious about your experience.
Thank you!
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Hi Peanutsjapan, Navelbine has been very doable with work. Easier than some of the other chemos. Halaven is not bad either but does cause hair loss. I took it for 2 cycles while waiting to start a clinical trial. I don't know about Gemcitabine. Sorry to hear that Xeloda is no longer working. It is a shame oral Navelbine is not available in the US. That would make things even easier. 10 minute infusion is not bad though.
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HI JFL Thank you very much for your quick response, and it is good to know that it is doable with work and also it takes only 10mins for infusion. Yes, Im bummed that Xeloda no longer working, since I haven't had much side effect except fatigue and mild HFS, but time to move on. I think I've read on some boards that you enjoyed the trip to Japan? I'm from Kobe and now I'm getting treatment at California:)Anyways thank you very much for your great insight.
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I LOVED Japan!!! I went to Tokyo, Osaka, Kobe and Kyoto. Kobe is a wonderful city. I so want to go back for the 2020 Tokyo Summer Olympics. My DH and I looked into it recently but the costs are already insanely expensive, even for Japan.
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