I had an appointment with my oncologist this morning to discuss my latest scan results. Unfortunately it wasn’t good news as it showed significant progression in the liver and a small amount in the bones. This wasn’t unexpected as I’ve had a steady rise in both liver enzymes and cancer markers.
The eribulin has been stopped and he initially told me that there was no further treatment available. When I pressed him he said that paciltaxol was still an option but because of my liver he considered that it would be to toxic, or that I could have vinorelbine, trade name Navelbine. He then observed that he didn’t expect either to be effective.
I’m starting on the Vinorelbine in 2 weeks, despite his pessimism, I’m not ready to give up yet. I just wondered if anyone on here had had experience with this drug?
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Julie2233
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Hi Julie, I’m so sorry to hear your cancer has progressed. I don’t have any info to share with you unfortunately, in fact that chemo is new to me. Hopefully someone else has experience with it. It’s good you’re keeping your optimism going. That’s the spirit! Wishing you well with the treatment.
Hey, Julie. I understand precisely where you are in decision making. And I truly hesitate making any negative comments especially as this might be just the thing to help you, however it did not me. After months of Ibrance and Faslodex, then trials of Xeloda and Gemzar to which I had very bad reactions, we switched to Navelbine. Two doses of Navelbine and I had yet another bad side effect that resulted in a lung condition called Insterstial Lung Disease for which I’m still on oxygen. This is an uncommon side effect, but a serious one. Not looking to frighten you, but just to alert you. We are not always made aware of what can go wrong and we are often times willing to accept negatives to prolong our opportunities to live. Do talk candidly with your oncologist. For me, I’m taking a break from all chemos as right now they are doing more harm than good.
Study it out, and you’ll know what is right for you. Wishing you well, kc
Thanks 😊 no, that’s exactly why I posted the question, hearing about bad experiences is just as useful, if not more so, as hearing about the good ones.
Hi Julie. I haven’t tried this drug but I believe Navelbine is available in oral form. Is that what you will be taking? The oral version might be less toxic on your liver.
Julie I am so sorry. I am not far behind you but have not yet tried Vinorelbine. If I hadn’t been on trial I would have been on eribulin but like you my liver is not doing great so it is unlikely this will be next treatment. Has your oncologist mentioned clinical trial ? I know the list reduces as well when liver function is affected but it might be worth enquirying? The trial I am on is Tropic 2. Saying that my liver mets have only partially responded to treatment and some are still progressing and markers still increasing so it is definitely not the new wonder drug!
I asked him about trials and his view was that there weren’t any taking new participants at the moment but if I found one he would discuss it with me! I will have a look at tropic 2, thanks. After posting I reread the scan report and realised that the bone mets had shown signs of healing in response to treatment. This is the first time I’ve had any positive response to treatment.
Yes the liver is an absolute bugger! I wish I enjoyed myself more when it had only spread to the bones ... You don’t know at the time, you worry about everything but actually when cancer spread to the liver you enter a totally different ballgame!
I am on the trial drug Sacituzumab Govitecan . Started last month.I was diagnosed in May 18 with MBC ( Lymph nodes and bones ) . Started on Ibrance then after progression moved to Affinitor and everolimus in Summer 19, didn’t work so moved to faslodex in Sep 19 which didn’t work either and caused progression to liver . Dec 19 started Xeloda before Moving to Taxol in March 20.... By sep I was looking at moving to eribulin after significant progression in bones and liver but was accepted on trial and lucky enough to get drug trial. Things have been OK, liver function up and down and markers up but still being kept on trial after 6 weeks checkpoint . No major side effects apart from hair loss , mouth sore and nausea...
I had genome testing in December and I sadly have none of the fancy mutations that are being targeted by most trials and was told by my oncologist as a result trials were unlikely to be an option for me so I consider myself lucky one was suitable
I’ve just had a look at the Tropic 2 and unfortunately it’s an American trial and I’m in the U.K. but I will have a look this evening to see if I can find anything over here.
Also or is used on comparaison with what dr would have given you ( and vilnorelbine is listed) so best case you get new drugs, worst case you get vinorelbine which you would have had anyway.
I am so sorry to hear that your last treatment isn't working. I don't have any experience with Vinorelbine but I am glad that you are advocating for yourself! We’re here for you!
Dear Julie - My gosh, what a difficult discussion with your doc, I'm so sorry! And I do have an issue with him saying that "neither was likely to be effective", seems harsh, and besides, unlikely things happen all the time.
I'm glad you've got your fighting spirit and I wish you the best with the new treatment. Please do let us know how it goes, we're here for you...
Hi Julie, I have been reading your posts for two years so I was so sorry to hear your cancer has continued to progress. Some others here have given some good suggestions so I hope you can follow up and find a way forward that works well for you. I don’t have anything useful to add atm except to express how I feel sometimes - F*** Cancer! 😠
Praying for answers & treatment that works for you Julie 🙏❤️🙏
Hi JulieSorry to hear about your progression. Sounds like you have had some very good advice from the others. So I will send you my best wishes for your next treatment or trial. Happy reading!!
Julie, so sorry you are in this situation. Fingers crossed for something to work for you. I'm afraid I know nothing about these treatments. My turn will come I am sure. Sending you hugs, Fay
I haven't had experience with this drug but good there is an option. I pray it works for you and kicks the cancers butt!Love and hugs,
Marianne
Hi Julie,
I’m sorry to hear that you are dealing with progression. Not just that, but having to put up with a pessimistic oncologist too. He should be doing his best to build you up, not kick you while you are down. How does he know that your next treatment won’t be effective? It could very well be. I hope you do well on your new treatment.
Alternate treatment for you. I was taking xeloda for 3 months and was changed over to Vinorelbine(Navelbine) I have been on that treatment for 5 months. I did not have any side effects except for my veins getting sore for a few days after. A heating pad helped. Please make sure your nurses gives you a good flush after your infusion it helps alot. It only takes 6 minutes for the infusion and 2x as long for the flush. If they rush it the burning will continue in the veins.
Well my doctor was looking for an alternate drug again and she found a clinical trial for me. I
I start on december 8th. I will be taking tomivosertib daily starting with 200mg and moving upwards. The routine will be every 7 days I will have to be on iv chemo (paclitaxol).and the 4th week I will be off What i dont know if I get a break from the tomivosertib in the 4th week.
If you like I can keep you updated on how this new treatment is, and I would love to hear how you are making out on the vinorelbine.
Thanks Shelby, that’s really reassuring to hear. I will certainly make sure that the flush isn’t rushed. How often was the chemo administered? I haven’t been told anything about how the chemo will be delivered (iv or tablet) I am anticipation IV but can’t find any information on how often this is done.
I took navelbine for about 6 months, i was stable the first 3 months and then my cancer progressed. My doctor says at this stage 6 months is about what's expected. I'm on my 8th line treatment currently
I’ve done my first cycle. I’ve been given tablets. Following the first dose I ended up in hospital with a high temperature and was found to be dehydrated, had the same reaction to the second dose but was told to stay at home as they didn’t have anywhere safe in the hospital to put me.
My oncologist is now saying that I’ve reached the limit of the chemo he will allow and this is the last. I had a second opinion and that oncologist said the same though ‘if I was still here’ in the spring he would be running a trial I would be suitable for but might not meet the criteria as I’d already had too many lines of chemo. The give with one hand and take with the other!
I'm sorry you got sick I tolerated the navelbine really well. I always got a bag a fluid with the infusion though so maybe that helped.
I cant believe the doctor said if you were here in the spring! Keep fighting! Have you had any genetic testing done? I did back in March on a liver biopsy and I have a braca2 mutation and there is a targeted therapy for that (lynparza) that i just started on hopefully it will shrink and stabilize this crap.
Apart from the reaction when I take it, I’m actually feeling quite well, certainly better than when I was on the eribulin.
I spoke to the oncologist today and he’s told me to take paracetamol when my temperature starts to rise. He is happy for me to continue with the drug, which is a relief.
One of my aunts had the BRACA mutation so I was tested but it wasn’t found.
I don’t know what it is about me, but oncologists always seem to think they can say things like that to me.
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Scan results
NGS Test/Next-Generation Sequencing Important to have done.
Liver MRI Scan results
Soooooo excited!
