What happens after Zelboraf stops working?

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What happens after Zelboraf stops working?

Postby lisaberry » Thu Nov 01, 2012 1:01 pm

My mom has been on Zelboraf for about 4 months and it has caused her tumors to shrink between 40-70%. Because of its limited temporal durability, her doctor has been looking for a PD-1 trial for her. In the current trial, patients have to be off of Zelboraf for 1 month before you can start PD-1 therapy. She stopped the Zelboraf last week and the tumors came back in full force within those 7 days; she went from not being able to feel any tumors to having golf ball sized growths in her abdomen and god knows where else. I don't think that she can survive for a month without the Zelboraf in order to get the PD-1.

I was curious if there are any combo Zelboraf/PD-1 trials on the horizon or other options. We are so thankful that the Zelboraf has been working (despite the very harsh side effects), but are scared that when it stops she won't have time to start on a new medication.

Thanks for reading,

Lisa
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Re: What happens after Zelboraf stops working?

Postby dkmc » Mon Nov 12, 2012 3:01 pm

Lisa
This a good question. Did they stop Zelboraf because the side effects were so bad? Or is it more like there are openings in a trial now so he wants to get her in while he can. It seems that a lot of people stay on Zelboraf til it stops working. Has she already tried Ipi? My husband was put on Ipi first(& is now NED) but he was Braf neg so could not use Zelboraf. It sure sounds like anti PD-1 is the way to go but hard to say which is best. Ipi takes awhile to work also even if you start right away, but she would not have to "off" Zelboraf for any length of time to start it. Good luck to your Mom & family...so hard to make these decisions as no "right" way to go. Karen
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Re: What happens after Zelboraf stops working?

Postby Catherine Poole » Mon Nov 12, 2012 4:20 pm

Unfortunately, the trials usually require a wash out period, I'm so sorry to hear how quickly the disease is coming back. I would also ask the doc why he stopped the zelboraf. Which PD1 are they looking at?
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Melanoma International Foundation
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Re: What happens after Zelboraf stops working?

Postby lisaberry » Tue Nov 13, 2012 11:46 am

Thanks for your replies, Karen and Catherine.

The Zelboraf was still working, but the doctors wanted her to be able to get into the anti-PD1 trial while there are openings, since the drug seems so promising.

The study is: Study of MK-3475 in Participants With Progressive Locally Advanced or Metastatic Carcinoma, Melanoma, or Non-small Cell Lung Carcinoma (P07990/MK-3475-001 AM5)

In the beginning, her (previous) doctor assured her that he would keep a close watch on the progression of the tumors and recommend that she go back on the Zelboraf if things progressed too fast. He and the other doctors seem like they just have too many patients to keep an eye on my mom... she wasn't asked to report new tumors and they only do PET scans/blood work about once a month. She is now having severe digestive problems, so that she can hardly eat anything without it coming out one end or the other. I don't know if it is related to the cancer, as she has had digestive issues all of her life, just never this severe.

I wish that we knew how likely it would be that there would be another PD1 trial once the Zelboraf stops working. The only other treatment she has had was an electorporation vaccine trial which did not work... so ipi and vervoy seem to still be on the table as options. I really want her to start back on the Zelboraf, but she wants to hear that recommendation from a doctor. She goes back to SF in one week for bloodwork, then one more week before the 1st infusion... hopefully she will be able to eat/drink so that she will be able to make it :(
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Re: What happens after Zelboraf stops working?

Postby Catherine Poole » Tue Nov 13, 2012 2:39 pm

I would ask the doctor about a possible bowel obstruction. This sometimes happens with melanoma. Does seem like a tenuous situation. That is the Merck Anti Pd1 and it does have promise. Perhaps you should call the doctor and talk about the digestive issues soon. Let us know how things go.
Catherine M. Poole, President/Founder
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Re: What happens after Zelboraf stops working?

Postby Shirley Z » Tue Nov 13, 2012 11:11 pm

Hi Lisa,
Just wanted you to know I'm thinking of you and your mom and keeping you both in my prayers.
Its so hard watching someone you love suffer. It can really take a toll on the caregiver.
Hope things start to improve soon.
Shirley Z
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Re: What happens after Zelboraf stops working?

Postby lisaberry » Mon Nov 19, 2012 11:11 pm

Update:

After a MRI that showed no problems in the intestines and spine, things started "moving" for my mom (in terms of her bowels, that is!). I do believe that stress was the culprit this time.

She had bloodwork done at UCSF today, and is scheduled to get her first PD1 infusion next week!!! I am very hopeful and thankful to have lots of family, friends, and MIF posters thinking positive thoughts for my mom.

~Lisa
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Re: What happens after Zelboraf stops working?

Postby Catherine Poole » Tue Nov 20, 2012 2:57 pm

great news! Thanks so for sharing. Let us know how she does with the PD1
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Melanoma International Foundation
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Early on PD1 trial with fluid on lungs, around heart

Postby lisaberry » Wed Dec 12, 2012 7:50 pm

An update: my mom was hospitalized on Saturday due to escalating shortness of breath. Ecocardiogram showed fluid around heart, which was stable compared to an eco she had on Tuesday.
CT-scans showed fluid on lungs... she had them tapped and drained today and yesterday. She also has abdominal pain and fluid in the connective tissue in her abdomen which they are treating with diuretics. She is being discharged now!!

She is supposed to go to UCSF for her second PD-1 infusion on Monday, but may be dropped from the trial depending on the results of the lab work (eg if the fluid shows malignant cells, they will probably drop her).

I know that lung inflammation was the cause of the 3 deaths that occurred in the initial PD-1 trial. What I want to know is: were those patients who died "responding" to the PD1?

I'm wondering if the accumulation of fluid is actually a sign that the PD1 is working... the immune system going into overdrive, or whether it means that the cancer is going crazy, out of control.. that the PD1 is not working. Ultimately her oncologist will make the call on Monday, but she would probably prefer to have another thoracentesis (lung drain) if the PD1 were actually working.

Curious if anyone has insights and I appreciate the love from concerned strangers!

More on Monday or Tuesday....

~Lisa
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Re: What happens after Zelboraf stops working?

Postby NYKaren » Thu Dec 13, 2012 3:08 pm

Hi Lisa,
Will be thinking about your mom and looing forward to your post next week.
all the best,
Karen
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