please share your experience and opinion

[vinetta]

Hi,

My mum (non-smoker, just turned 60) was diagnosed with Adenocarcinoma of right lung T3N2M0 Stage III A in May.
She also has DVT and was not considered for surgery. Chemo was refused too because she developed anemia and Hipoalbuminemia and generally feels quite weak after all the antibiotics, warfarine (for DVT) and Videothoracoscopic talc pleurodesis to stop fluid coming back to her lung. Doctor has prescribed Tarceva and she's been on 100mg for 10 days now. No side effects, apart from fatigue and tiredness. Cough has nearly stopped and breathing is more even. We have seen doctor again and all of a sudden he seemed very pessimistic and said that Tarceva does not seem to be working (after 9 days only) since lump in her lymph node had not gone down. My question is - is it right to give up so quickly? Initially we were told that she should be on Tarceva for about 2 months to see significant results. Has everybody had either very fast improvement or ...? Please, share your experience!

Thanks!

Vinetta

[norfolkbirdie]

Hi Vinetta
I'm sure you will get plenty of responses from all members here and all our responses will be positive but different. I can't believe a doctor would want to change treatment after so short a time! Cost seems to rear it's head at this stage, could it be this? Your mum seems to have gained from Tarceva already with cough reduction and breathing, so keep going! With this drug no one seems to know too much about optimum times etc...so it is down to ourselves. Focus on the benefits she is gaining from it now and explain these to her Doc. Most of our Oncologists seem to follow up after 2/3 months with CT scans etc.. this should give a clearer picture of disease response.
Some great information on this site that Deanne has put together that should help you as well.
Ros

[jljenkyns]

Hi Vinetta

I was lucky i had a response within 3 days , My cough subsided my breathing improved and quality oflife basically just got better. what you have to remeber is everone has a different chemistry makeup and like every drug it will act fast on person and not so fast on another. I cannot believe your clinican is has become pessimistic after such a short time. How can he say it is not working when your mothers cough has reduced and her breathing is more even.? Why did he not start her on 150mg that is what everyone else has started on this is more invasive and your mam will probably get a rash but once you she finds a happy level she can reduce. A positive thought for you when i was diagnosed with stage IV last year my tumour was 29mm x 22mm after chemotherapy and radical radio therapy there was still progression in the tumour. Today after requesting my medical notes and having a ct scan 2 weeks ago , This is after i have been on Tarceva for the following period 150mg 13 days - off for 12 Days owing to serious rash. Resumed on 75mg for 16 days then back on 100 mg until present time. Scan results 25th June 2007 tumour has shrank to 19mm x 21mm that is a 3rd reduction also in addition the mets i had in the other lung have also reduced i only hoped this gives you some hope tell your doctor your mam wants to keep on the tarceva

jimmy

[dtay]

Hi Vinetta
My dad is on tarceva and they gave him an x-ray after a month and a ctscan after 3 months - no way, after a few days, did they ever say that it didnt appear to be working. :oThey said they could normally tell after a couple of months. My Dad takes 150mg daily and his cancer is currently stable with Tarceva. Whereas with the chemo his disease actually progressed. He has a decent quality of life, which is more than we dared hope for.
Dont let them give up yet !!
dawn

[Deanne Jenkyns]

Hi Vinetta,
I am shocked by your mums oncologists suggestion after only nine days esp as her symptoms have improved! Your Mum is the boss, if she wants to continue with Tarceva they have to support that! If you don't mind me asking where is your mum having her treatment? Keep us posted as to how things are going and Goodluck!


Take Care
Deanne
x

[vinetta]

Thanks to everybody for support!!!

Just to explain few things - my mum is Finnish and until recently was treated in her home country. Unfortunately, there was nobody to look after her, besides, for nearly 3 months docs were treating side effects rather than the cause itself. I had to fly out there every other week and fight with them to get her treatment started asap. I was the one who found info about Tarceva, it appeared local docs were aware of it but said it's a lengthy process to get funds for the treatment granted and basically suggested me to get her off their hands...

She is getting private treatment in the UK, of course, as NHS would not have anything to do with her. Not as much as take her blood pressure.
I live in London and closest private hospital to us is Blackheath who has referred us to Dr Leslie (Consultant Clinical Oncologist to The Guys, Kings and St Thomas).
Doc was very optimistic to start with and said she was in the right group - reportedly responding best to Tarceva. Now, thinking back to that first visit I find it very strange he did not do any new scans/measurements of the lumps/x rays. We had some old x rays with us but they were taken nearly a month ago.
We started Tarceva and severe cough she had has nearly dissapeared. She is very weak though, her right lung is all white on xray but her breathing has somewhat improved (it's still fast) but does not have that terrible whistle or gurgle...

On our second visit (just 9 days after starting Tarceva) doc seemed to be dissapointed that mum is not walking herself (she can but finds it exausting because of DVT and anemia). A new lump had appeared in her lymph nodes but that appeared on the second day of treatment and has not increased since - mum even recons it is going down (oh, I hope!!!)
I will try and push the doc to give us 150mg instead of 100mg as I understand that's the dose to start with. Especially, if she does not have severe rash (apart from few pimples and uneven skin on her forehead and chin). He has prescribed some stereoids to keep her metabolism up and help her breathing but now she can not sleep at night and feels even more exausted plus her heart is racing.

We have to see doc on th 18th again. It will be 30 days since first administration of Tarceva and, in his words, if he sees no progress there is nothing he can do. Mum does not speak English but she saw doctor's face and that was enough to discourage her.
I just can not understand how is he supposed to monitor the progress or absence of it if he has not measured her lymph node lumps nor done CT scan. All he has is an xray.

I am dreading that day....

[Deanne Jenkyns]

Hi vinetta,
Your mums syptoms have improved which is a very good sign and in my opinion tells me that the Tarceva is doing her some good. I cannot get my head round the fact the oncologist is so negative about things it makes me quite angry actually! That he can be so matter of fact about this. Your mum is starting to improve which in my opinion it what's important. Some of these bloody oncologists thing they are god and they know better, which in our experience is not the case. Jimmy's oncologist told him to stop taking Tarceva becase of the rash! We knew that the rash was common and can be a good sign so we refused his request to stop taking it. thank goodness we did his CT scan results have proved him wrong! I think sometimes you just have to go with your instinct. your mum knows how she feels and her own body better than any DR. Stick to your guns and challenge everything. I have a feeling you will do that any way. Your mum is ver lucky to have you on side. I feel so much for people who are alone and have no one to fight this disese with them. Stay positive! We are all rooting for your mum on here.


Take care
Deanne
x

[Deanne Jenkyns]

Hi vinetta,
Was wondering how things are going with your Mum. Hope she is doing ok.


Deanne
x

[vinetta]

Thanks Deanne! So... we went to see Onc yesterday and YES!!! there is an improvement! Slight improvement he said but we've only been taking Tarceve (and not even the highest dose) for a month. Lumps in her lymph nodes have gone down slightly, breathing (although fast) is better than it was before and cough has practically dissapeared. She is very weak though due to low level of albumin and anemia, too. That's the next thing to sort out now.
I can't possibly describe how afraid I was to hear that there has been no improvement or that cancer has progressed.... Tarceva is the only treatment she has received to fight the cancer and looks like it's doing the job!

Vi

[Deanne Jenkyns]

Vi,
Fantastic!!!!!! I'm so happy to read this, I love reading positive news. Tell your Mum I am thrilled for her. I think once you have the anemia sorted out she will feel a lot better. I can relate totally to being afriad hun. the wait is awful, it's like waiting for a bloody sentence!


Take care
Deanne
xxx

[jljenkyns]

Hi Vinetta

Great news even if only a slight improvement that is a fantastic positive and as you say she is on a low dose.! As deanne said once the anemia is sorted out maybe she can up the dosage for a while to create more improvement she will eventually find out the dosage she is most happy with.

Personally i am on 100mg daily but i am having a rest as it is playing havoc with my stomach.

Give my best wishes to your mother

jim xx

[dtay]

Delighted to read this great news.
Dawn x