Docetaxel

[mags03]

I have NSC adenocarcinoma and am about to start Docetaxel as my third line treatment

I would like to hear from anyone who is or has been on this chemo.

Thanking you in advance

Mags.

[jujuju]

Hi, I have just finished 6 cycles of docetaxel, the last 3 with nintedanib. I wanted nintedanib with it from the start, but NICE were in the process of approving it and it was off the early access scheme. It was approved and then there is a 90 day wait, I did get it a bit earlier thanks to the efforts of my oncologist and the oncology pharmacist. So I took I with my last 3 chemo. Two capsules twice a day.It works with the docetaxel and gave good results in trials so I would ask for nintedanib with it. In for a penny....

Anyhow the docetaxel wasn't as bad as I had thought. I used the cold cap and lost no hair at all....well not on my head! Also I had zarzio injections to self inject from day 7 to 14 to keep my white blood cells up, also antibiotics to take at the same time. I started on a reduced dose, something my oncologist does routinely, and didn't go above that as even with the zarzio my white blood cells were low a few times at first. I didn't really have many side effects until the 5th and 6th cycle, which we did because the nintedanib were available. Then I had nausea , vomiting, generally feeling off, also taste bud issues. I did get a swollen foot and ankle somewhere after the third session too. I had a scan after the third session, which showed slight shrinkage and my cough went after the fourth one, great news! I am having a scan in January, I chose not to have another one before then. I am still taking the nintedanib and it will be used as a maintenance , as long as it works.Side effects are minimal with it.Hope this helps, anything else you need to know, just ask.

Best wishes

Julie

[mags03 in reply to jujuju]

Julie thank you so much for your very informative reply.It has given me a lot to think about.i had not heard of nintednib and will definitely mention it to my oncologist when I see him on Mon 14th before starting the docetaxel.I am having four three weekly treatments.

He does a lot of lung cancer research and I'm sure he will have heard about it but although Nice have approved it it may not be funded by all the health trusts,or if it is suitable for me.

I have read up quite a lot about nintednib since I received your post and I feel quite positive .

You seem to have coped very well,I was told that I may loose my hair,my nails and swelling of hands and feet.I am happy to put up with anything to stay alive but hearing from you has helped me a lot.I hope you will get good scan results in Jan.

Thanks again Julie I will keep you posted after I see the oncologist on Mon.

Mags xx

[jujuju in reply to mags03]

Hi Mags , glad it was some help! I also used very dark nail varnish on my finger and toe nails as I had heard that may help. I haven't lost any nails although they are a bit of a mess just now.

Very best wishes

Julie

[mags03 in reply to jujuju]

Hi Julia

Sorry I've not been in touch for some time.I am wondering how or if you coped with nintedanib added to docetaxel .I was seeing my oncologist just after we spoke last time and although I had never heard of Nintedanib until you mentioned it he put me also on a combination of both.I was on the lowest dose of docetaxel (having one IV chemo three wkly.) and200mg twice daily nintedanib By day three I was feeling poorly-nausea tiredness ,sore around my lung area and aching all around my body.My temp for the 3wk was fluctuating between 37&38 and my hair started falling out.Outcome of it all was when I saw the onc. For my 2nd session I was too ill,white cell count extremely low,neutrofils were 0.08 ,I had neutropenic sepsis was admitted into isolation .(not the best way to spend Christmas )they stopped IV chemo,started IV antibiotics and Zarzio daily.All soon settled down and I was back home on Sun. After Christmas .Im still on nintedanib and having very little side-effects and my hair is slowly growing back.

Sorry Julie for spending so much time about me!!!and I really do hope that you tolerated everything better and that your Jan. scan was still positive

I will look forward to hearing from you.

Mags

[jujuju]

Januarys scan was not so good. Slight growth but considered stable. I am now off nintedanib as my bowel stopped working and we don't know why, so stopped it in ccase it was causing or contributing to it. Had two weeks in a hospice trying to get it sorted and at home with a laxative regime. Not feeling brilliant but maybe its my new normal!

You can see why my oncologist had me on zarzio from day 7 to 14 every cycle? Also why I used the cold cap. I hope things continue to go well for you.

Julie

[mags03 in reply to jujuju]

Julie I don't know if you will still remember me.We spoke in January re.docetaxel and nintedanib.You were having significant bowel problems and had stopped both drugs and I wonder if you have started a new path.

I continued on nintedanib and restarted docetaxel,getting 1/3 of a dose weekly for 10 wks.From the 1s/t week (on antibiotics) I was having high temps and low white cells.After two sessions in hospital with IV antibiotics my oncologist feels it is not for me.At the moment I am not on any cancer meds.Last Mon he gave me a lot of literature to read about a trial drug and when I see him tomorrow I have to have my mind made up to give or not written consent.I am assured it is not a double blind study and I am definitely having the drug trial.

This may not be of any help to you but I wanted to update you on my journey and am very interested to hear from you

Good luck and take care. mags.

[jujuju]

My oncologist has applied for nivolumab for me, under the early access scheme. Depends if I have PD1 mutation or not. I had finished the docetaxel, six courses and have stayed off nintedanib. off today for my first of 4 sessions of radiotherapy to my chest as my cough is so bad.

I had antibiotics from day 7 to 14 every cycle of doce and also filgrastim injections. I didn't get any infections or problems. Bowel is fine now, although we think it may have been caused by old radiotherapy to my sacroiliac. I have lots of fluid and swellings in my abdomen. There is a chance that its mets. I will have a scan if I am accepted fro nivolumab so we are waiting.

Best wishes

Julie