Update of the pilot from Istanbul and questions..... - 1259463

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zeynepdilek
Update of the pilot from Istanbul and questions..... - 1259463

Dear Friends.... here is the update of my husband and my questions .......

10 May 2011 Backache…Xray & Pet-CT & Biopsy : Lung cancer / Adenocarcinoma
Stage IV – both lungs & lymph nodes ( before cancer healthy 56 years old airline pilot )

1 ) June 2011 / Cisplatin + Alimta + Zometa 6 round - %90 regression
Alimta maintenance 6 round - progression /

2) March 2012 / Carboplatin & Taxotere 8 rounds - regression

3) May 2012 – Cyberknife to lung /
Biopsy ALK positive Xalkori 4 months * Progression to some bones *

4) September 2012 Cisplatin & Gemzar 6 round / Regression %28 ( bones gone )
Cisplatin & Gemzar 4 rounds Progression & stable /

5) 19 March 2013 Cisplatin & Alimta & avastin zometa..

Cisplatin allergy - Anaphylaxis .. stopped cisplatin

6) Alimta & avastin - progression

7) June 2013: Vinorelbine after 3 rd round Neutropenia, & fever.. 2 times at hospital had 2 times blood transfusion - feels better...

While at hospital... Tomography was taken and it seems that the cancer is now also at the lung pleurae and also there is Pleural effusion - not too much need to be aspirated yet....

Also since 2 months Started too much coughing, can not stop with the pill with codeine...

What to do next ? It seems that Vinorelbine is not working.... and we have no chance any more with Cisplatin....

What to do????

On Thursday we 'll have his control and probably in next days a petscan.... Just wanted your ideas before seeing his doctor... Since March 2011- 2.5 - years he is getting different chemos... Do you think is it better to wait and and let him rest for a while or change the medicine and go on.... We have to stop the vinorelbine for sure now and there is no chance with cisplatin after the Anaphylaxis ....

Thanks

Good luck to all of us...
Zeynep Istanbul / Turkey

Dr West
Reply To: Update of the pilot from Istanbul and questions…..

It's great that he has done so well for so long. In patients with an ALK rearrangement, some second generation ALK inhibitors such as LDK-378 from Novartis, CH5424802 from Chugai, and AP26113 from Ariad have appeared very promising, including in people who have developed resistance to XALKORI (crizotinib). I don't know how accessible a trial with any of these agents might be, but I would consider one of these agents to be a promising option even for patients who have demonstrated progression on XALKORI.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

zeynepdilek
Reply To: Update of the pilot from Istanbul and questions…..

Thank you very much Dr. West ....This is very good news ....

Tomorrow, we 'll talk about these medicines with our doctor....

Do you have any advice for his coughing ??? He is having Geralgine-K .. which is:
Paracetamol………………………………………………….……..500mg
Cafein…………………………………………………………………30mg
Codein phosphate…………………………………………………..10mg

but really has no effect

His only problem is coughing now... It makes him really tired...

Thanks a lot !!

Zeynep

JimC
Reply To: Update of the pilot from Istanbul and questions…..

Hi zeynep,

Here's a post from Dr. Harman about managing cough: http://cancergrace.org/cancer-treatments/2009/05/09/managing-cough/

Good luck with the scan!

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

zeynepdilek
Reply To: Update of the pilot from Istanbul and questions…..

Dear Jim,
Thanks a lot for the post..... It is really helpful

laya d.
Reply To: Update of the pilot from Istanbul and questions…..

Hi zeynep. . .

I just wanted to pop in and say hi. . .and also to say that I hope your husband's cough and other issues resolve very soon.

Thanks for keeping us posted,
Laya

zeynepdilek
Reply To: Update of the pilot from Istanbul and questions…..

Thank you Laya.....

borntosurvive
Reply To: Update of the pilot from Istanbul and questions…..

Hi!
I was having a huge problem with coughing and was trying a dry cough syrup, because it seemed and acted like a dry cough. Then the cough got really bad. I couldn't stand it. I pulled a muscle, I was always suppressing it when in public. One night, it was so bad, I was going to sleep on the couch. Then I decided to take 5mg of Valium (prescribed to me) to see if that settled the spasm, and I also switched to an expectorant. And it's been much better ever since. I only take the cough syrup every couple of days if I need it. Not every day. Hope this helps you.

zeynepdilek
Reply To: Update of the pilot from Istanbul and questions…..

thank you very much

zeynepdilek
Reply To: Update of the pilot from Istanbul and questions…..

Dear Dr. West,

We talked with his doctor yesterday.... She told us that having medicine trials is not legal in Turkey. So we'll have to wait these drugs to come out to market...

She also planned a Pet scan for next week and a blood test to check and to plan what to do next...

Thanks for your help to all of us...

zeynep

catdander
Reply To: Update of the pilot from Istanbul and questions…..

Below is a link to the next gen trial that your husband may be accepted to along with the sites in Turkey that hasn't started recruiting. I wonder if there's something your onc knows about why it hasn't started there and many other places too there are several that have withdrawn. ??

http://clinicaltrials.gov/ct2/show/study/NCT01828112?term=ALK+inhibitors...

"Turkey
Novartis Investigative Site Not yet recruiting
Ankara, Turkey, 06100
Novartis Investigative Site Not yet recruiting
Istanbul, Turkey, 34303
Novartis Investigative Site Not yet recruiting
Pendik / Istanbul, Turkey, 1330"

zeynepdilek
Reply To: Update of the pilot from Istanbul and questions…..

Thank you very much... I just send an email to Novartis .... Thanks thanks

zeynepdilek
Reply To: Update of the pilot from Istanbul and questions…..

And today ı have time.... and ı am searching clinical trials in Turkey.. and yes it is not illegal to have ... ! ı don't know why our doctor told us like that... Will search more this week..... Thanks for the informations

zeynepdilek
Reply To: Update of the pilot from Istanbul and questions…..

Great news !!!...

Talked to Novartis ... They were really really helpful...

They told us that they're waiting approval from ministry of health for the clinical trial of LDK 378..
In about 1-2 months they will get it for sure... So they will talk with my husband's doctor about this....

Thank you Dr. West and and thank you Catdander.... If you wouldn't tell me these things I would have never known about clinical trials !!!!

catdander
Reply To: Update of the pilot from Istanbul and questions…..

That's great!!!...

If it weren't for Grace I'd not know about them either. So happy to be able to help out another...

zeynepdilek
Reply To: Update of the pilot from Istanbul and questions…..

very very bad news from the last Petscan.... right lung is full of tumors, and the spine...
he is coughing extremely and sometimes becoming breathless...

Doktor advised us to get an oxygen concentrator at home because he will need it soon... and they started weekly Taxol .....

I feel terrible.... Just wanted to share with you...

Thanks

cards7up
Reply To: Update of the pilot from Istanbul and questions…..

Any luck on the trial? So sorry to hear about the progression. Wishing you all the best.
Take care, Judy

zeynepdilek
Reply To: Update of the pilot from Istanbul and questions…..

Trial will start next month or in 2 months at most... If he can stay until that time I hope they will take him to trial...

JimC
Reply To: Update of the pilot from Istanbul and questions…..

zeynep,

I'm so sorry to hear about the scan results and symptoms.

Best thoughts for successful treatment.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

laya d.
Reply To: Update of the pilot from Istanbul and questions…..

Zeynep:

I am so very sorry to read about the latest on your dear husband. I hope that the treatment he is getting is effective for him. I'm keeping both of you very close in my thoughts. . .

Laya

Dr West
Reply To: Update of the pilot from Istanbul and questions…..

I'm sorry I somehow missed this latest unfortunate development. I hope he and you are doing OK. Thinking of you.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

zeynepdilek
Reply To: Update of the pilot from Istanbul and questions…..

Thank you dear friends and doctors....Thank you thinking of us and it really helps me to talk with you....

The last update is:

Last week He had his Friday chemo ( Taxol) ..

There was 1 week of holiday in Turkey so he wanted to have a travel... we drove 6 hours to south of Turkey to a nice little seaside village.... We were with our friends ... my lovely husband ate and drank a lot ! He was really happy...We stayed there for 6 nights...

Really it was great... He coughed less... ( doctor gave him another medicine - Codein 30mg (apranax plus) and Flantadin ( deflazacort 30 mg/ day) and Combivent ( 4 times 2 puffs a day) They helped him a lot...

After eating and drinking and relaxing that much last night we came back home... this morning he weighed and we saw that he lost 2.5 kgs. ( 5 pounds!) How can this happen I really don't understand... I felt terrible... I thought he would gain at least 2-3 kilos but he lost them!

Today he will has his Taxol again....

Thank you to all of you.....
Zeynep / Istanbul

zeynepdilek
Reply To: Update of the pilot from Istanbul and questions…..

But at the same time I don't want to be pessimistic because he is still eating great...
His cough is less, his breathing is better.... so there is always hope and there is always something to smile :)

Zeynep

catdander
Reply To: Update of the pilot from Istanbul and questions…..

I'm so glad you and he had a great vacation! And there's always hope even though what you hope for changes.

I don't know if you're familiar with anorexia- cachexia. This post talks about it. http://cancergrace.org/cancer-treatments/2009/02/16/acs-mgmt/

zeynepdilek
Reply To: Update of the pilot from Istanbul and questions…..

Thank you dear...
My husband has a great appetite since 10 days..He eats more than ever and drinks :))

But before that he was eating very little and vomiting a lot for almost 2 months... so maybe we have to wait a little more to gain weight....

catdander
Reply To: Update of the pilot from Istanbul and questions…..

yes that sounds right. He'll need a little bit to catch up.

zeynepdilek
Reply To: Update of the pilot from Istanbul and questions…..

I lost my handsome on November 27, 2013 ..... after staying at hospital hand in hand for 10 days... Never slept, never left him alone for 1 minute....It was a long good bye for 10 days ..... I miss him ... I still love him and will love him always....

JimC
Reply To: Update of the pilot from Istanbul and questions…..

zeynep,

I am so saddened to hear of the loss of your dear husband. He was very lucky to have your love and to have you by his side every step of the way. I hope that you can take some comfort in your memories of the happier times you spent with him.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

catdander
Reply To: Update of the pilot from Istanbul and questions…..

Dear Zeynep, I'm very sorry to know you've lost your dear husband. My wishes for you are of peace and of happy memories with him. You were a good and brave companion and he was lucky to have you there throughout his sickness.

All my best,
Janine

Dr West
Reply To: Update of the pilot from Istanbul and questions…..

I know you made his life much better. Cancer is a terrible disease, but it is better to not have to face it alone.

Please accept my heartfelt condolences.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

bobradinsky
Reply To: Update of the pilot from Istanbul and questions…..

Please accept my sincerest condolences. I can tell from your notes how much in love you two were and what an excellent caregiver you were. May you find peace in the coming days. Bob

catdander
Reply To: Update of the pilot from Istanbul and questions…..

Just wanted to say HI :) to you Bob. I hope you're fairing alright.

laya d.
Reply To: Update of the pilot from Istanbul and questions…..

zeynap:

I'm so saddened to read that your husband has passed. I wish you and the rest of your loved one patience and peace while you grieve.

With a heavy heart,
Laya

bobradinsky
Reply To: Update of the pilot from Istanbul and questions…..

Catdancer

Thanks for thinking about me. I'm doing OK. Mothers day was kind of rough without Beth but we had a nice visit at the cemetery. Watching my grandkids ( 1 & 4) grow keeps me grounded and I have recently decided to take a new job which I just began last week. Landed a job on my first interview. Not bad for age 69. I love what you do at Grace. Best regards. Bob