I have just got the results of the CT scan after 3 months of Capcetibine/Lapatinib and, as I suspected, it hasn’t worked for me. My skin, lung and bone mets are all very slightly worse so my Oncologist is putting me on Vinoralbine. Having had progression after only 3 months of Herceptin and now the same with Cap/Lab, not to mention after having radiotherapy last year to my pelvis, T10 and mastectomy site, T10 fractured, my pelvis fractured and my skin mets re-appeared so I am beginning to feel that nothing ever works for me. I would love to hear from anyone who has had a good response to Vinoralbine to give me a bit of hope.
I have been on crutches since my hip replacement 5 months ago. I tried to use one crutch but my pain increased. I then realised I have one leg shorter than the other and on investigation it appears the new ball and socket has been positioned higher up in my pelvis than the good side, so I’m feeling like nothing ever goes my way.
Sorry for the rant but i’m feeling pretty fed up at the moment.
Sorry to hear you are having such a difficult time. I too startd Vinoralbine last week, had my second infusion on Tuesday. I also have bone mets, skin mets and regional recurrances and nothing has worked for me for any length of time either. Let’s hope this is the one for both of us. Side effects for me have not been bad yet although I just slept most of today. Think tirdeness will be the main one - as usual.
Wishing you all the best with new treatment, you certainly deserve some luck this time. I would also love to hear a success story about it too.
hi,im on vinoralbine[iv],had two courses up to now but my veins are bad so hoping to go on the tablet form till my scan next month.my main problems are aching all over and tiredness,just hope it works for us all.xx
So sorry that the Cap/Lap didn’t work for you, also that you’re still on both crutches. Keeping my fingers crossed that the Vinoralbine works for you, and without too many side effects.
Hope this drug works for you ! Dont know much about it but have been told if xeloda fails for me thats what i will be going onto next. Fingers crossed for you that this is the one xxxx
I’m another starting this next week. After further progression on herceptin, we are once again having to resume chemo. I have secondaries and so far have had taxotere (good response), xeloda (no response at all), and carboplatin (good response.) But whenever we use herceptin alone, we get further progression.
So 3 new people for this drug.Hope it works well for us all-or at least some of us. I too would love to hear some success stories-has nobody used it succesfully?
I think vinorelbine was a success story for me in that I was having a lot of lymph node swellings around my upper chest, collarbone and up to my jawline just below the ears. They were causing quite a bit of trouble with scar tissue so I couldnt turn my head from side to side, some damage which affected one of my eyes (horners syndrome) etc. I had to come of capecitabine just into the 3rd cycle because of bad side effects. When I went onto vinorelbine all the lumps & bumps went,even the scar tissue somehow eased up and I could turn my head again :). I think I tolerated the drug quite well, without too many side effects. In fact I felt so good I went off on a cruise to Alaska when I finished the course.
When I returned I thought some of the lymph nodes were starting to come back and it was at that point they discovered I was her2 positive, which is why I started by saying I think it was a success story.
Thanks for your replies, i’m sure I have read of some success stories for Vinoralbine in the past, but thanks for yours Dawn. I wonder why some of us are having it IV and some tablet form - I will be on the tabs.
We are off to the Cotswolds tomorrow for 5 days so I hope to switch off from BC for a bit.
Good luck to all of you others starting this chemo.
I had the option of tablets or IV and I chose IV as I hate taking tablets and take enough for pain control, feel I rattle already. I get the IV two weeks out of three so none this week and I’m feeling great!! I think that my skin mets are easing up a bit - certainly stopped progressing which is great. Too early to say anything else but fingers crossed for us all.
Dawn thanks for your wonderful post it has given me hope. I do hope things are easier for you and they have managed to do something for your pain to get it under control.
Will keep in touch about how it’s going. Enjoy the Cotswolds Linda and switch off from it all - it certainly does the world of good to get a break from it, have a great time.
Had my first IV vinoralbine on Tuesday and haven’t had much in the way of side effects. I was actually written up for tablets, but this was changed at the last moment-partly because my haemoglobin levels are low, and partly as he feels it’s gentler with gi issues-and it’s also easier to reduce the dose if necessary, if it’s being used in IV form.
It really doesn’t seem to be a terribly common one, so am hoping that it’ll be a bit of a hidden gem! We’ve also increased my pain relief, as this was starting to become a limiting issue for me.So hoping these two changes might give some relief and good results.
I am just going into cycle two on Tuesday and I think my skin mets are reducing - definately stopped progressing. How are you feeling on it? I am on my ‘week off’ and feeling great. Only issue for me was tirdness. Good luck with it to all of us.
You are definately not alone on the sleeping front. One day after last infusion I just could not get up and slept the whole day and night. I did feel good the next day. I don’t think I notice any difference in tumours yet - I have one under my arm and neck nodes but fingers crossed. Seeing onc on Tuesday so see what she says. Have you been through different chemo’s first - think this is my fifth!!
Hi Girls,
I had my first IV Vinorelbine on Wednesday (2 days ago) and so far I’m feeling surprisingly chipper. No nausea or other immediate effects other than red veins in my arm yesterday. But I’m aware that I felt fine after starting Taxotere, and 7 days later I was on hospital with septicemia! I go back for the second dose next week, then its 2 weeks on and 1 week off for 6-8 cycles.
It’s great to read so many positive posts about this chemo. I have lots of small lumps in the area where my breasts used to be, and I’m hoping that the Vinorelbine will stop them spreading.
Please keep posting everyone.
Lots of love, Lynn
I had my first vinoralbine yesterday (tablets). Have felt a bit tired today and have a girgling tummy which I feel may be a warning of imminient diahreoa but stuff it, I am still having my indian takeaway shortly!
I do hope it is a reduction. My onc measured tumour under my arm last Tuesday and it had gone down from 3cm to 2.5. There is a definate improvement in my skin mets and they are slowly receeding. It’s early days yet so I’m scared to get my hopes up but things going in the right direction. Next chemo Tues then week off. I’m not so tired this time so hope it keeps up.
Good luck to everyone and fingers crossed you are right Tiny.
Had my 2nd IV vinoralbine 2 days ago. This time they gave it to me over 10 minutes instead of 20 minutes last time, as they now know I’m not allergic to it and sending it in faster reduces vein damage. This time there was no redness or tenderness afterwards, still no nausea, just some tiredness - which isn’t surprising.
But, best of all, the skin lumps are noticeably fewer, smaller and less hard than 10 days ago! It’s early days, but the signs are very positive so far.
Love to you all, Lynn