Treatment for Advanced /METASTIC NSCLC

[1122334455321]

Have just completed 6 chemos of Pemetrexed and Carboplatin for the above. Result of post treatment scan shows that there is No further growth but also NO shrinkage" the Oncologist wants me to consider either Docetaxel or Erlotinib.. Does anybody out there have any experience with either of these treatments? I have asked to gave 3 months off from chemo to have a bit of "quality" of life. They keep telling me that my prognis us us poor and in the next breath tell me that I am in "very good condition"!!! All rather confusing.

[suesal123]

I had the Same treatment as you followed by Docetaxel. I had 6 rounds of it and there was a small shrinkage at first and then just held it. I didn't really feel any worse on that than on the Carbo/Pem although there is a good chance of losing your hair. I didn't but I did use the cold cap treatment, although it doesn't always work

[1122334455321 in reply to suesal123]

Thank you so much for your prompt reply MUCH appreciated. We're you offered the choice of Erlotinib? Hiw long ago did you complete the last treatment?

Thank you so much for your help. MUCH appreciated.

Nan

[suesal123]

I was not offered Erlotinib/ Tarceva as I started on Iressa which is a similar targeted therapy so they say there is no point. I finished on Docetaxel in March this year and I have just finished 2 weeks of radiotherapy as there are no more treatments, other than trials, available. If there's anything else you need to know just ask.

Sue x

[1122334455321 in reply to suesal123]

Thank you so much Sue.

All the best Gorst you.

Nan

[jujuju]

I would definitely try erlotinib/Tarceva first. Its generally much easier than chemo if it suits you. I have been on it for 16 months and will have to start chemo some time in the new year as I now have mets to my bones as well. I will have docetaxel and nintedanib which can be very effective but with side effects I don't really want! They are huge list of possible side effects from tarceva but main ones are skin rash and diarrhoea . It starts very quickly but normally settles to a reasonable state after about 6 weeks.The standard dose is 150mg, I had mone reduced to 100mg. It has enabled me to work and have holidays and live a normal life. I had surgery, cisplatin and pemetrexed, Tarceva and just a bout 6 weeks ago radiotherapy to mets to my sacroiliac joint to relieve the pain. Any more questions just ask. It would be useful for you to put erlotinib or tarceva into the search box, top right hand corner,and read the posts that come up. Best wishes.Julie x

[1122334455321 in reply to jujuju]

Thank you so much juju just for a very detailed and helpful answer from a brave lady, good to know that there are people like yourself out there who are prepared to take the time to try and help us "anxious novices" in this jungle of cancer treatment.

Nan

[Olic]

I seemed to have had the nearly the same treatment as you but I only had four lots of chemo and was stopped as there was no change. Chose to go on erlotinib straight away though I was offered a break. I agree with suesal123. Yes there are side effect and I feel I am working my way through the list. But no worse than some of the effects of chemo. I explain to friends that I might not have a good day now and again due to the drug and so far they have all been understanding and helpful when I have not been too good. And there is yet more tablets and creams that will help with the side effect. " Wait until you have been told you are very fit and in good health for your age. I feel a young 65". Hope you get on okay. Keep in tough

[1122334455321 in reply to Olic]

Many thanks Olic. All the best to you too.

Nan

[Mark63]

Hi

I had the same treatment as yours over two years ago. I had NSCLC the outcome of my chemo was exactly the same. I was advanced stage 4 cancer. I decided to have Erlotnib, this is a daily oral tablet. It worked well for me and kept the cancer at bay for nearly 18 months. The side effect were reasonably ok, mainly a bit of tiredness and a skin condition on various parts of my body a bit like teenage acne. They were able to treat this when it got bad with anti biotic or simply having a drug holiday for a few weeks. I had a really good time I could carry on with most of my normal activities, holidays and gardening.

I am now back on Chemo treatment, Docetaxel which seem to be working well at the moment, touch wood! Best of luck with your decision I hope this helps a little. If you want more detail I wrote quite a long post about my experience a few months ago. I am sure you can still access this.

Mark

[1122334455321 in reply to Mark63]

Thank you so much Mark, it give me so much peace to know that I am not the only "lost cause" as the Oncologist more or less indicated last week! Left me quite discouraged. Will look for your original posting.

All the best for you you.

Nan

[Mark63 in reply to 1122334455321]

No problem, Try to think of yourself as a survivor, best of luck

Mark

[bikerpat]

Ertinlib (Tarceva) might help you. I've been on it for 13 months, with shrinkage of the primary lung tumor (a little), elimination of brain mets, and uncertain effects on bone and liver mets. It is a once-a-day pill. When I started on it I was near death, and now I'm like you - "very good condition" but no encouragement for long-term success.

Side effects of Tarceva are well documented online. Tarceva uses moisture from your body to do its thing, that results in dry skin and a rash that can be very bad, but can also be managed with moisturizers.

In spite of the side effects, Tarceva is why I'm alive today, and I don't resent that.

If you go the Tarceva way, send me a message here and I'll tell you more. The blog "Tarceva Dudes and Divas" on Inspire.com has very good discussions.

[1122334455321]

Thank you so much for your encouraging message. Just one more question, how often do they do blood tests and scans when one is on treatment?

[jujuju]

every 28 days xx

[1122334455321 in reply to jujuju]

many thanks Jujuju

[jujuju]

Every 28 days for blood tests, for me every 3 months for ct scan but some only have scans every 6 months. Blood tests are done before he prescribes another 30 days of tarceva. He has prescribed 2 months last summer so I could have august off!Sorry my last answer wasn't totally correct.Julie x

[1122334455321]

VERY helpful thank you Julie.

Take care

Many blessings.

Nan

[LorraineD Partner Roy Castle]

Nan

lots of very good advice here from the people that know best. Appreciate everyone sharing their experience. If it would be useful we have booklets on targeted therapies (including erlotinib) and also chemotherapy.

Hope you have lots to discuss at your next visit to the consultant, am sure the more information you have found from reliable sources the better conversation on the pros and cons of treatment options you will have.

best wishes

Lorraine

Roy Castle Lung Cancer Foundation Information & Support team

helpline Freephone 0333 323 7200 option 2

[1122334455321 in reply to LorraineD]

Many thanks Loraine, will pick up some literature. Appreciate your taking time to reply.

Nan