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

zeynepdilek
Posts:25

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

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Reply # - September 24, 2013, 09:57 PM

Dr West
Posts: 4735

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

Reply # - September 25, 2013, 12:52 AM

zeynepdilek
Posts: 25

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

Reply # - September 26, 2013, 06:48 PM

borntosurvive
Posts: 52

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.

Reply # - September 27, 2013, 09:31 AM

zeynepdilek
Posts: 25

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

Reply # - September 27, 2013, 11:55 AM

catdander
Posts:

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+inhibitor…

"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"

Reply # - September 27, 2013, 11:24 PM

zeynepdilek
Posts: 25

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

Reply # - September 30, 2013, 02:04 AM

zeynepdilek
Posts: 25

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 !!!!

Reply # - October 8, 2013, 01:51 PM

zeynepdilek
Posts: 25

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

Reply # - October 19, 2013, 12:47 AM

zeynepdilek
Posts: 25

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

Reply # - October 19, 2013, 11:55 PM

zeynepdilek
Posts: 25

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....

Reply # - May 12, 2014, 02:08 AM

zeynepdilek
Posts: 25

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....

Reply # - May 12, 2014, 05:19 AM

JimC
Posts: 2753

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

Reply # - May 12, 2014, 10:21 AM

catdander
Posts:

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

Reply # - May 13, 2014, 06:56 PM

bobradinsky
Posts: 144

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

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