vinorelbine - 2 weeks on, one week off.

[queeneee]

Has anybody found that they feel fine when taking the drug, but get painful bones in the week off?

This could be a cancer flare up, or something else? I am taking it orally.

[Bettybuckets]

I hope you get some responses as I am sure we all want to know of that happens a lot.

[Hopeful4Cure]

Hello queeneee, I just posted a question about this drug. Very, very few people are on it and I am curious to find how you are doing. I will start it with 90 mg on the 26th of Dec and one week off and then again on the 2nd, etc. Did your doc give you nausa meds too? Thank you in advance for your reply.

[queeneee in reply to Hopeful4Cure]

Hello, I have only been on it for about 5 weeks. I am told it usually given to people after IV chemo (which I haven't had yet). It is not used that often, but is an established treatment. I am given two tablets with the Vinorelbine to take one before and one the morning after for my stomach. These are good. I have felt a little bit 'sicky' which I didn't count as bad as 'nausea' but it seems it is - so I take a pill when I get that (or half a pill) they act quite quickly. V can all cause loss of appetite, so do everything you can to stay hungry. The V itself causes some constipation after taking it - they give you sachets for that. I am not prone, but still get it a bit. I eat dates and lots of fruit - watch out for constipation lasting more than 48 hours, if it gets compacted, you can quickly get in trouble, and need an operation. Stay active too. I think my dose of 70mg is quite low, I am not sure we have it right yet, as it seems to wear off towards the end of the week and my bones start to hurt. Interesting that you are one week on, one off, I might ask to try that, or a low dose during the week off - if my red bloods and liver are still fine. Good luck! Interested to hear how you get on.

[Hopeful4Cure]

Thanks a lot for your timely response. Yes, I see that it is not used very often. Have your tumor markers come down? I was told to take the pill, I forget the name for nausea 15 minutes prior to the 90 mg (3 three pills) and they did not say when to take it, but did say on an empty stomach. Do you wait then prior to eating having breakfast or lunch? Thanks

[queeneee]

We don't measure tumour markers so much in the uk with the type of breast cancer I have. HER+ low. Have with a meal and take pills as directed - this stuff can be hard on your stomach. I have a CT in January.

[queeneee]

UPDATE. CT scan after 2 months of oral vinorelbine shows stable bone and liver mets.. (not really long enough after start of use, but NHS lists required I had it earlier than 3 months use) Bone pain massively improved by move from daily Ibandronic acid pills to Denosumaub (xgeva) monthly injections. I got 3 good years from the pills, so happy to change.

Good news and joy at reduction in bone pain!

[Ntash01 in reply to queeneee]

Good news queenee- I’ve just taken day 8 of my first round. So far so good, but bc nurse told me dosage gets higher next round - so I’m hoping I don’t notice anything too drastic.

[queeneee in reply to Ntash01]

Hi, I know that drug dosage is according to weight, but can you tell me the percentage increase they are going to give you?

[Hopeful4Cure]

Thank you for update. I was taking 90 mgs day 1 and day 8, sorry for the confusion. So, 2wks and then one week off and then blood tests. So, I just saw my doc on Monday and he increased the dose to 120 (4pills) mgs. Hence 30mgs since last dose. I try not to take too many extra pills. When I took the first 2 doses of 90 I did not use the nausea meds and had no problem, but when I took the 120 yesterday, yes, I felt quiet ill. However, i use a lot of essential oils and made a glass of tea with ginger and that quickly eased the sickness.

I do not know why he increased the dose as it is suppose to be according to your BMI, I am the same weight as last time. Tumor markers did not come back yet and the only issue he told me was I was higher anemia blood test, which is better than being low. Normal is 8-9 and mine was 12. Anyhow, I really hope this works for me as Xeloda after 8 months did nothing and my markers kept increasing. I too am HER2 low - are you es/pr+ postive then too? HNY and I hope you are doing well.

[Ntash01 in reply to Hopeful4Cure]

BC nurse has already told me that next round dosage increases, I’m assuming they get your body used to this new treatment gradually 🤷🏻‍♀️In the past Ive started on higher doses then it gets lowered.

Loved you tip re tea & ginger - I’ll be sure to try that. I have not taken any additional pills for nausea ect. To be honest - I was petrified to begin these meds - the packaging is so scary, it felt military operation!!! Here’s hoping we get longevity on Vino by the grace of god x

[Hopeful4Cure in reply to Ntash01]

Exactly. I really hope for all of us that we all can hang on and remain strong. I also take cbd products that help also. So this Tues I the 4th dosage on day 8. Then off for a week and then another blood test to check if I can stay on the 120mg and if my markers have come down. I got my markers back on Friday and they went up almost 200 pts in just a month - now at 605 15-3 and the general markers (0-5) is up too at 35. Ugh.

[queeneee]

UPDATE: even though Vin seems to have stabilised my mets, I have decided to stop it as I felt so bad after taking it that I was in bed 4/5 days out of 7. Now on Megace oral treatment

[Hopeful4Cure in reply to queeneee]

Thanks for letting us know Q. I am still on Vin, but I am not taking the whole 120mgs (4) pills all at once. I had taken 90mgs no problem at all, but when my doc upped the dose to 120, the second cycle was horrble for the whole week. Now, I take 2 in the morning and a few hours later, I take the other 2 and it made a huge difference. No nausea, bathroom issues or cramps. Plus, I am not as tired. I just think that the 120 at once was too toxic. I did not need to take any other meds doc gave me either. I hope the new meds work for you. We will all be looking Megace up!

[Ntash01]

Hi Q - so sorry to hear that s/e’s we’re so bad. After higher dose last week I know what you mean…24 hrs of feeling awful. I felt the nausea wave happening so I popped the anti sickness pill, but I wasn’t ready for the ‘loo’ saga! Anyways, I was not alllowed to take 2nd dose of cycle 2 as my alanine transminse shot up to 194 UL from 89…. Not sure what that means but I figure that was bad!

What is megace? Are you feeling better on it, glad you managed to dodge IV! My scan will be taking place in April, so I’ll know more then, in the meantime the lumpy bit I can feel seems softer and smaller… but I think that maybe wishful thinking 😏!

Tc nx