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March 25, 2013 at 7:59 pm #21134marta010Participant
Hi – I would appreciate the board’s comments/experiences in making the decision to move from Zelboraf to Ipi and when/if surgery should be considered. As background, my husband was diagnosed a year ago with Stage IV with mets in the cervical lymph nodes and brain. His brain met was treated with gamma knife and subsequent craniotomy and his brain is currently stable. He is Braf + has been on Zelboraf since April 2012 which shrunk the lymph node tumors significantly – the two remaining “hot” lymph nodes have been stable – still active but not growing. He also had radiation on the neck area last July which resulted in a radiation necrosis issue in his throat. His ENT dr & oncologist are now suggesting a neck dissection to remove the right side lymph nodes. Is it best to remove the active tumors or try Ipi? Do you stop Zelboraf before moving on to Ipi or can they be taken concurrently? I’m hesitant to put him through major surgery. Thanks for your thoughts.
AnnMarch 27, 2013 at 6:41 am #59799GillyParticipant
I cant be much help but my husband has non resectable mediastinal node metastases – he is on Zelboraf also – he has had a small amount of shrinkage but mostly just stable – we have been told that if there are any new mets or growth on his current ones he will go onto Ipi – I guess if the Zelboraf has had some effect on your husbands cervical nodes then it has made them more operable . Surgery always seems to be the preferred option if its possible – but I dont think if he’s still responding to Zelboraf they will take him off it. My hubby has a lone met in his pelvic area also and they said they would remove that if it shrunk but there didn’t seem any point until they had seen significant reduction with zelboraf on all the mets since they wouldnt be able to remove the mediastinal ones due to their position. Surgery is always scary but it is still the most sure option if they can do it with not too much “collateral damage ” – the worry is compounded by the radiation necrosis he sufferd I am sure – its always such a worry but Ipi only works for I think around 30 % of people – so I can see why your docs prefer the surgery route and Zelboraf often stops having an effect at around 6-9 months. I think if they think they have a good shot at successful surgery now the mets have shrunk now is the time to get at them ! all the best .March 27, 2013 at 3:42 pm #59800dkmcParticipant
Hi Ann- am I reading into this that the “hot” lymph nodes are in his neck? Don has had 3 neck dissections & when it came time stage 4 with mets to lung he said no to more surgery & went with Ipi & is now NED. Braf negative. I had a harder time saying no to surgery but the reasoning was now that it had left the neck area he needed systemic treatment-and if it did not work then surgery(cyberknife). Don’t you wish there was a “right” answer….a proven “way to go”.
If Zelboraf is still working my question would be why surgery now? I am thinking they are stable & the time is right to get them. For us with neck mets it was get them out- no questions. If it comes back to his neck it will be surgery again but it will be harder/more dangerous because of the massive adhesions from surgery & radiation. We have a great oncology head & neck surgeon we trust but we can tell he really hopes to never have to venture in again. Weighing the options is so hard…good luck! KarenMarch 27, 2013 at 6:23 pm #59801erinmay22Participant
I started Zelboraf May 2012. The plan by my onc was to only take it for 4-5 months to shrink the tumors and then switch to Ipi which has a better long term durable response but takes longer to work. After 4 months I had growth of my intestinal tumor. We decided at that time to do surgery (it was growing and causing partial bowel obstruction) and start ipi. I had last dose of ipi Nov 27th. I did have growth of a lymph node in December scans(they couldn’t remove via surgery due to it being wrapped around an artery). The plan if I had growth was to get me in to Sloan’s anti-pd1 trial. Fortunately scans Jan ’13 showed shrinkage – and I started pd1 Jan 21st. Will have my first 12 week scans on April 12th.
There are a few folks I know that have had a long term response to taking Z – but for most it does stop working at some point – so having a back up plan is good!
ErinMarch 28, 2013 at 3:35 pm #59802marta010Participant
Thanks for your comments. The consensus among his oncologist and ENT surgeon seems to be that it would be best to do the neck dissection now while the tumors are limited to this area of his body. Also, if we decide to go the surgical route, they would be able to simultaneously remove/reconstruct the suspicious ulceration in his throat. Since this area has not definitively been identified as cancerous, we are hesitant to do a radical throat reconstruction. We’re taking a conservative approach and waiting another 3 -4 weeks before making a final decision. Thanks again for your thoughts.
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