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.
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.
Take care,
Jo, Facilitator
Gail - I shall follow your progress on here, instead of the Xeloda threads. Good luck!
Ann xxx
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.
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.
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
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.
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
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.
Gail - I assume you are on oral chemo. How is it going?
Ann x
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.
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.
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.
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.
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.
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!!!
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.
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.
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.
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