ALK positive mutation - 1260113

patt
Posts:10

Diagnosis thought to be 65% mucinousadenocarcinoma pancreatic stage 4. Sequencing shows ALK+ with crizotinib the treatment. Trying to do this treatment but keep running into blood counts tanking and having to go off and on and trying lower doses and still working at it. Where there is so far nothing that is working to combat these "c" cells, would CyberKnife asurgery with Synchrony® Respiratory Tracking System for the liver and pancreas tumors be an option? The current problem added to theCrizotinib is Ascites. Had one parencentisi and lasted few months, recent one was a refill the next day and so far no relief. Taking spironolactone (Aldactone) 300mg and furosemide (Lasix) 80mg but not kicking in yet. Any suggestions - PLEASE

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Reply # - October 26, 2013, 10:35 AM

catdander
Posts:

Hello patt, I'm sorry you're having such a difficult time on crizotinib. I'll contact a doctor to comment on your questions. In the meantime I don't know if you've seen these but we have a fairly active AKL + treatment thread in the lung cancer forum. The members so far have adeno lung cancer (and the forum is in the lung cancer forum) but I imagine side effects are much the same and I know they would be more than happy to have you join, http://cancergrace.org/topic/alk-or-ros1-nsclc-patient-group

and an ALK inhibitor question forum, http://cancergrace.org/forum/cancer-treatments-symptom-management/alk-i…

I hope you are able to sort out these problems,
Janine
forum moderator

Reply # - October 26, 2013, 01:13 PM

double trouble
Posts: 573

Hi Patt. I had alot of trouble on crizotinib and eventually refused further treatment. Mostly diarrhea/constipation but also edema. I hope you get things worked out. Hang in there.
Debra

Reply # - October 26, 2013, 04:17 PM

patt
Posts: 10

Thanks Debra and Janine. Just so hard. The patient is my daughter, 30 years old and this all came to be shortly after her second wedding anniversary. We all hoping a baby and never suspected anything like this. It's hard to not knowing where to go for support, she just doesn't fall into any box, first with the mucinous, then standard pancreatic did nothing, then this ALK+ mutation that is found in NSCLC which she does not have. So bizzare :( Trying to look for possible alternative treatments or similarities. Hoping counts stay up enough to stay on crizotinib and this do something. Again, thanks for the ear!

Reply # - October 26, 2013, 10:43 PM

Dr West
Posts: 4735

I'm sorry to hear about her diagnosis -- so tragic. Unfortunately, none of the focal therapies you mentioned has any known role in pancreatic cancer, nor would we expect there to be any value if the cancer has spread throughout the abdomen, which is likely to be the case if she has ascites (fluid in the belly). Chemotherapy is the main cornerstone of treatment for advanced pancreatic cancer and likely remains a possibility if all she has received thus far is crizotinib, an agent that is certainly understandable to pursue in the setting of any ALK-positive cancer, but it's definitely not an established treatment for pancreatic cancer at this time.

Good luck.

-Dr. West

Reply # - December 5, 2013, 03:19 PM

patt
Posts: 10

Dr. West,

With the ascites you mention above that the cancer may have spread throughout the abdomen. How do you know, would that this is the cause of the ascites? Also, having tried folfininox and gemcitibine/abraxane (2 best pancreatic chemos) with no positive results where do you go?

Thank you for any input you can provide.

Reply # - December 5, 2013, 08:57 PM

Dr West
Posts: 4735

Ascites is exceptionally common in pancreatic cancer, so I don't have ironclad proof, but it's just 10,000 times more likely than any other explanation.

Unfortunately, there is no identifiable treatment that is at all likely to be effective if the two most effective combination therapies have been ineffective. I wish I could suggest an alternative, but the truth is that there is likely nothing on this earth that we know of that has any meaningful probability of helping.

-Dr. West

Reply # - December 7, 2013, 06:23 AM

patt
Posts: 10

Dr. West,

Has anyone used any white blood cell growth factors such as Neuprogen or Neulasta while taking Crizotinib and do you think this can be used to raise WBC/Neutrophils?

As always,

Thank you so much

Reply # - December 7, 2013, 09:52 AM

Dr West
Posts: 4735

It could be, but I'm not sure it'd be covered. Because Neulasta costs something like $9K per injection, it would be important to know whether it will be covered, and I wouldn't presume that an insurer will cover it for pretty much continuously every 2 weeks.

In general, I think dose reductions or treatment breaks are a far more commonly employed approach.

-Dr. West

Reply # - December 19, 2013, 01:12 PM

patt
Posts: 10

Does anyone have information regarding immunology as a solution for ALK+ mutations? What is it, is it for solid tumors only or could be used for mucinous ones, how effective?

Thanks ever so much.

Patt

Reply # - December 19, 2013, 08:54 PM

Dr West
Posts: 4735

There are many immunotherapies discussed here on the site -- you'd need to search the site to find any of the more than dozen posts about immunotherapies for lung cancer, since there's too much for more to catalog here -- but none of these has been suggested to be more effective in ALK-positive NSCLC. To my knowledge, there is no immunotherapy being studied now that is specifically being developed for treatment of only ALK-positive patients.

Good luck.

-Dr. West

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