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Anyone on Vinorelbine (Navelbine)?

36 REPLIES 36
Anne4C
Member

Re: Anyone on Vinorelbine (Navelbine)?

Sorry for typos. That should be oncologists not once! And worry that liver too damaged for chemo.
Anne4C
Member

Re: Anyone on Vinorelbine (Navelbine)?

Hello everyone I'm posting again for my partner and would warmly welcome any replies based on your experience. Her tumours in her liver have been growing since scan found them in April. Initially suggested faslodex but with a recommendation for it to be monitored closely and impression by oncs of not much hope in it. In that light she opted for a trial. Cancer has continued to grow in the 4 weeks of the trial. A scan is planned for tomorrow. Sheay then have to come off the trial. The big decision then is whether to go for chemo or not. Once is saying her liver may be too dagef to cope with the toxicity. But it is her choice. Alternative is no treatment. Anyone in a similar situation?
Boattripper
Member

Re: Anyone on Vinorelbine (Navelbine)?

Started tablet form yesterday. My onc is not a great fan of it success-wise, but here's hoping. Was on Eribulin for 9 months prior to this before it failed.
Sweet-Gemzie
Member

Re: Anyone on Vinorelbine (Navelbine)?

 
nellienix
Member

Re: Anyone on Vinorelbine (Navelbine)?

Hi gail5. I have just finished cycle 3 of vino redbone. The side effects have been minimal. Tiredness and nausea. I get scan later this month and see onc on Friday 9th may. Will keep u updated. Hope it's working for me. Hope it goes well for you too. Be in touch soon. X helen
Katherine2701
Member

Re: Anyone on Vinorelbine (Navelbine)?

Hi there, this is a message for Horsey5050. we messaged some time in the past and I just wondered how you were feeling and how your scan went in February as I know you said you had some pain. I do hope you are feeling well, you made me feel so much better with one of your messages before so I often think of you.
Missy64
Member

Re: Anyone on Vinorelbine (Navelbine)?

Hi Angelfalls

 

Thank you for asking. I had my first dose on Tuesday and asked about the capsule, my trust isn't funded for the capsule at the moment but hopefully will be in the future. So far I'm suffering from muscle ache across my back and liver area along with jaw pain!  I thought I'd been grinding my teeth in my sleep but checked the side effects and found that jaw pain was one.  I've also got the lovely coated tongue and sore mouth so eating has been a bit of trial and error to find something satisfying.  A lovely cold Magnum Ice Cream really hit the spot earlier 🙂  Feeling rather sorry for myself but I think it's all an accumulation of everything this past couple of weeks, getting the progression results, going back on chemo and losing my holiday that I feel worn out but I'll come around.

Angelfalls
Member

Re: Anyone on Vinorelbine (Navelbine)?

Hello Caroline,

How did you get on with your first IV dose? I hope you're feeling OK and that this chemo will be kinder to you than Capecitabine was, but tough on those liver mets! Did your onc explain why you're getting the IV form and not the capsules? I know that in the States they don't seem to use oral Vinorelbine, so it would be interesting to hear what your onc says... Take it easy and enjoy the weekend if you can.

Missy64
Member

Re: Anyone on Vinorelbine (Navelbine)?

Hi All,

 

I will be starting Vinorelbine on Tuesday or Wednesday.  Getting a PICC line put in on Tuesday but now sure if I will be getting the chemo then too.  Would have preferred the tablet form.  I shall have to ask my oncologist why I'm getting it intravenously instead or orally. 

 

I'm really not looking forward to next week as I ended up in hospital last September after 12 days on Capecitibine but fingers crossed I will be fine.  Hopefully it will knock the little blighters away from my liver.

 

I shall keep an eye on the thread to see how everyone is coping and to compare notes.

 

Carolyn

Angelfalls
Member

Re: Anyone on Vinorelbine (Navelbine)?

Laura, The appt. was fine - just signing the consent form and getting my bloods done ready for tomorrow when I go in to pick up the Vinorelbine tablets... But it was after 1.30 before I got out of there, so a bit late to join you by the time I would have got in to town. Glad to hear you had a nice lunch, though, and I've pencilled in 7th March. Hope to see you then!

Su, I've signed up for 20th Feb., so hope to see you there! Good luck with the Taxol. I was on that around 18 months ago and found it very do-able. Fingers crossed you'll get great results from it with minimal SEs.

su-bee
Member

Re: Anyone on Vinorelbine (Navelbine)?

Sorry I didn't make it on Wednesday, Velindre was packed. I start Taxol on Monday, then I will have it every Friday, so I probably won't make the next meet up. Are any of you thinking of going to the BCC secondary suppotrt day in Cardiff on the 20 th Feb ? I hope to make that.

Su

horsie5050
Member

Re: Anyone on Vinorelbine (Navelbine)?

Haya,  it was a lovely lunch, sadly I had to break my pinot grigio & after eights diet-but what the hell!!!  The pain is so minimal that I feel a fraud mentioning it really, so many ladies are in such bad pain.  How did your appt go?  I have my MRI on my liver in 2 weeks, so fingers crossed for stability! we are meeting again on Friday 7th MARCH.XXX

Angelfalls
Member

Re: Anyone on Vinorelbine (Navelbine)?

Hello! Good to hear from you, though I'm sorry to hear you're in constant pain. Can't they give you anything to keep that under control? Are you getting scanned after this cycle? I really hope this one is working for you, Laura. I'm also sorry I can't meet up with you and Anne today, but I've got an appt. at midday... I'm ok, just waiting to get started! Hopefully we can meet up again soon and compare notes! Look after yourself. Xxx

horsie5050
Member

Re: Anyone on Vinorelbine (Navelbine)?

Hi Angelfalls!!havnt been here for a while. I am on vinoralbine. I start cycle 3 on friday. I am tired on it, but other than that feel ok. I have constant liver pain now, a bit worried about it. How are you?xxx

Angelfalls
Member

Re: Anyone on Vinorelbine (Navelbine)?

Just bumping to see if anyone else is on this... Anyone???

Angelfalls
Member

Re: Anyone on Vinorelbine (Navelbine)?

I found out today that I'll be starting oral Vinorelbine soon (latest scans show the Everolimus/Exemestane combo has stopped working for me), so I'm resurrecting this thread to see if anyone is currently taking it, how you're doing and any top tips you might have... Thanks for any info!

Guest user
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Re: Anyone on Vinorelbine (Navelbine)?

Pauline, hope you get a longer run on Vinorebine. I'm more disappointed that it was such an easy chemo for me to take but it is nice not having to go to the chemo ward on letrozole. I think my onc likes to work through the chemos that give you the best chance of a decent quality of life first so she likes cap and vinorebine. She did think about putting me on letrozole before but decided to opt for chemo first. There do still seem to be plenty of options to run through as well. Hope your breathing improves soon too, I think I'm just a bit too impatient as live in a 3rd floor flat and struggling with the stairs just now.
Guest user
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Re: Anyone on Vinorelbine (Navelbine)?

Hi Gail sorry to hear that vinorrelbine is not working, i'v been taken off cap and start that next week.. I was given letrozole as first treatment and then went onto chemo. I had great results at first but then like everything else it stops working. I have just had my lung drained but am still breathless. Saw onc on Friday when she decided to change chemo. My daughter asked her if there was a logic or pattern to all these treatments I have been given. She said it was trial and error what works for one person won't with another. Some people tolerate different procedures better that others. So take heart I don't think they'll run out of options they'll just pick another off the pile. Hope you pick up soon, pauline x
Guest user
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Re: Anyone on Vinorelbine (Navelbine)?

Still getting a bit short of breath on the stairs almost 4 weeks after the pleurodesis but maybe have unrealistic expectations of recovery time. Saw onc yesterday for results of biopsy and I'm still ER+. Since skin lesions are on the rampage just now Vinorelbine is clearly not working so will be trying Letrozole next. I think she feels having had less than spectacular success on chemo so far it's time for a change in direction. She was thinking of putting me down for a trial which would be Letrozole and another drug but apparently I'm not eligible as I developed secondaries on Tamoxifen. I was a bit disappointed but it would have meant a delay in starting treatment and if I was in the placebo group I wouldn't be any better off. OH confessed later the discussion had upset him as it made him think she had run out of options apart from trials, so had to reassure him on that.
Guest user
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Re: Anyone on Vinorelbine (Navelbine)?

Back on chemo again yesterday, 4 weeks since last dose so hope the uggers aren't too out of control yet. Getting stitches out from op tomorrow and having a biopsy of skin mets on Monday to check if receptor status changed, so hoping hormone therapy could be next option.
Guest user
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Re: Anyone on Vinorelbine (Navelbine)?

lin6 - sorry you've had such awful SEs with Vinorelbine. Hope you're onc was able to give you something to help with it this time.
Have had a few days in hospital for my operation and just got out yesterday. Still only allowed light tasks and short walks but breathing is improving and have to be patient. Chemo delayed until Tuesday so hoping will feel much better by then as don't want to miss it again.
Guest user
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Re: Anyone on Vinorelbine (Navelbine)?

I started on Vinorelbine last Tuesday and have felt rotten, sleeping a lot, and terrible tummy ache/windy. I have multiple liver mets and I am really swollen across the liver area which is making me feel very uncomfortable. Will be seeing the onc this Tuesday for the next Tablet, not looking forward to more of the same!!!
Guest user
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Re: Anyone on Vinorelbine (Navelbine)?

Had a call from the hospital doing my pleurodesis to go in tomorrow and hopefully having the op done on Monday. Just need to phone tomorrow morning and make sure they still have a bed for me. If all goes OK should be out on Wednesday. Might have worked out having chemo postponed as should help boost blood counts. Unfortunately also means chemo won't go ahead on Tuesday either now. Looking forward to breathing again.
Guest user
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Re: Anyone on Vinorelbine (Navelbine)?

Chemo postponed till next Tuesday. Have been getting more out of breath and coughing, but they think it's possible I have a slight infection and not due to the fluid getting worse as temp was slightly elevated and they checked the chest and think it's much the same. Also may have infection where ulcerated skin is broken. So am now on double lot of ABs try to clear things for next week.
Guest user
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Re: Anyone on Vinorelbine (Navelbine)?

Good news is CT scan shows disease is mostly stable from last scan. May have a tumour in groin, but as it’s been a few months since last pelvis scan not sure how long it’s been there. Just noticed recently it was swollen and tender to touch. GP thought it was a lymph node but as it’s in the fat layer onc thinks probably not. They don’t seem too worried and will just keep an eye on it now. Mentioned I had some new skin mets, but they’re not overly concerned. Going to keep me on Vinorelbine a bit longer, but will do another biopsy of the skin to see if still ER+. Onc considering Letrozole/Xoladex as next treatment if receptors not changed. Also have more fluid in chest cavity so will need to have it drained. Was a bit scary seeing how small the left lung looked next to the right one on CT scan. Only minor breathing problems when climbing stairs so not an emergency case yet. They were originally talking about doing procedure under local anaesthetic using talc to stop it coming back, but as I’m considered young and reasonably healthy still I’m being referred to the cardio-thoracic surgeons to see if they’ll do an op that superglues the chest wall instead. Takes a few weeks longer so will get the other procedure if things get worse in the meantime.
Guest user
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Re: Anyone on Vinorelbine (Navelbine)?

Just giving this a bump as realised it was slipping down the list a bit. Now on full dose and will get CT scan next month to see how things are going. Think skin mets improved a bit on last cycle but then started growing again on the week off, so feel things are a bit mixed. Also have a bit of swelling in the groin area that gp thinks is a lymph node and onc has extended CT scan to cover pelvic area to check it out.
Guest user
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Re: Anyone on Vinorelbine (Navelbine)?

Hi Ann - I had my second dose this morning. I've been feeling really well so far and blood counts were good so didn't need to be repeated, which is always a bonus. I've been started on a really low dose but hoping it will be upped next cycle.
Guest user
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Re: Anyone on Vinorelbine (Navelbine)?

Gail - I assume you are on oral chemo. How is it going?

Ann x
Guest user
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Re: Anyone on Vinorelbine (Navelbine)?

Val - I've updated the Xeloda thread on your bone scan so won't repeat it here. Hope you had a shorter visit to Ward 1 today.
scottishlass
Member

Re: Anyone on Vinorelbine (Navelbine)?

Gail I just read your post on the Xeloda thread. I have posted on the bone mets thread if you want an update on my bone scan results, to save me repeating it. I wil keep my beady eyes open for you in the ward. We surely MUST bump into each other someday soo!!. All the best for your new treatment which I will be following with interest. I hope it works well for you. Sorry you had a delay in the ward for your drugs......I always seem to overstay myt time on the ward. Last week I didn't get home until 7 30pm! Hope it will be a quicker day tomorrow. Hugs from your elusive pal Val XX

Guest user
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Re: Anyone on Vinorelbine (Navelbine)?

Val - there's always a chance I'll get my dates changed if blood counts are low again, so you never know. Hope you got on OK with the bone scan.
Had to get blood counts repeated yesterday and pharmacy was ridiculously slow getting my tablets ready so ended up being stuck in chemo ward for 3.5 hours. On the plus side feeling quite good so far but could still be yesterday's steroid wearing off.
scottishlass
Member

Re: Anyone on Vinorelbine (Navelbine)?

Shame you couldn't get your bloods done later in the day on Monday at the Ward Gail as I am going for a bone scan and we could have met up. I will be ther on Monday and on Thursday next week for chemo. Wishing you all the best with the new treatment. I haven't been on Vinorelbine yet but know it is a possiblity but with me needing lots of blood transfusions it doesn't go well with this drug but I may be able to try it later. We woll meet one day! Love and a hug, Val

Guest user
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Re: Anyone on Vinorelbine (Navelbine)?

Hospital called this afternoon, so am booked in for Tuesday for chemo. Had to get appt for blood counts on Monday at 8:30. Not looking forward to getting up that early, so not used to it now.
Guest user
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Re: Anyone on Vinorelbine (Navelbine)?

Thanks Jo and Ann
Just going through the anxiety of waiting for new chemo date. Was hoping they could get me started on Friday as I already had that booked for Xeloda, but they can't fit me in next Friday for day 8 tablets, so will have to wait. Hope it'll be next week at least.
Guest user
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Re: Anyone on Vinorelbine (Navelbine)?

Gail - I shall follow your progress on here, instead of the Xeloda threads. Good luck!

Ann xxx
Jo_BCC
Member

Re: Anyone on Vinorelbine (Navelbine)?

Hi Gail,

Sorry you haven't had any replies as yet from your fellow forum users but hopefully someone will be along soon to support you.

I have put for you below the link to Macmillan's website where they discuss Vinorelbine. If you would like to talk to someone in person about this then our helpline staff are just a free phone call away.

http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Chemotherapy/Individual...

Take care,

Jo, Facilitator

Guest user
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Anyone on Vinorelbine (Navelbine)?

I was wondering if anyone is currently or recently been on Vinorelbine. I'm about to start this as my next line of treatment and would be great to get updates from anyone else about it. I did find one thread but it hasn't been updated for a while so starting a new one.