Back on the chemo

[Littleannies]

Hello everyone, I was told today by my oncologist that there has been a change on my adrenal glands on my kidneys and she wants me to have more chemo with a tablet called NINTEDANIB combined with the chemo only I really don't like the sound of the side affects. I was just wondering if anyone out there has been put on this and what their affects are, I know everyone is different but I'm a little scared of this one

Thanks peeps

[jujuju]

Hi it sounds like the chemo will be docetaxel with the tablets nintedanib. I have had three sessions of docetaxel but not been able to get nintedanib so far. It was on the early access scheme and then taken off while waiting for NICE approval. NICE approved it in july and then it takes 90 days before the nhs can get it. I am still trying!

I put off this chemo for ages and stayed on tarceva as I had read about the bad side effects. For me they have been very doable. Not so bad as cisplatin and pemetrexed.

I have the most amazing oncologist and he said to try the cold cap , which I have, and so far have a head of hair. Also he prescribes 7 x zarzio injections to boost the white blood cells and 500mg ciprofloxacin twice a day for 7 days, both starting on day 7 after chemo. Nintedanib is supposed to increase the effectiveness of docetaxel and you can stay on it as a maintenance therapy after you finish chemo.

I do get a sore mouth and sore throat after a few days and use Difflam every day and gargle with soluble aspirin if my throat is bad. Headaches, some stomach cramps, constipation....although nintedanib causes the opposite, heavy legs. From about day 9 bloating for a few days and I have put about 8lbs on although not eaten anything more.

I would give it a try. It often works very well. If its too harsh you can stop it. Also I have stayed on a reduced dose as my white blood count has been lowish after every blood test. Ask about the injections and antibiotics, it all helps.

Best wishes

Julie

[Littleannies in reply to jujuju]

Hi Julie

Yes the chemo is called docetaxel and it has been approved but not untill October still not licensed in the UK yet. I have read all the side affects and really don't like the sound of it on top of the chemo, I know I can stop these tablets at any time to, I have two little boys 5 and 2 and want to as active as I can be its such a tough decision, and as for the hair I thought that no matter what I do I'm going to lose it but if cold cap helps I might try it thanks. I do hope that you get approved for it very soon, and thanks for your reply

Take care

Ann