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January 30, 2013 at 7:56 am #20974
Help. He is in the hopsital at Moffit and is in PAIN. his scans are being moved up from the 6th of feb. to later today. the pain will be controlled with a inserted pain pump. he does not want to give up is considering radiation to the area of the large tumor on his back. i am numb and need to get some input and hope. all of his tests are in the normal range/ once the pain is under control is still in good health. he is braf negative according to old test. he is mtor possitive. he did not fail the merck mek trial he was on but moved to anti pd 1 when it became available in november of 2012. we will get results soon on the scans and I will be looking for information and support from some of the warriors here. Thanks for being here and reading.
SharonJanuary 30, 2013 at 9:36 am #58865GillyParticipant
So sorry for your worries and fears – I hope they get his pain under control asap in the first case and then you can bear waiting for the scan results – any possibility of Tils ? Is his pain on his back ? Hang in there – everyone is crossing fingers for you both.January 30, 2013 at 3:59 pm #58866patiParticipant Sharmon we are with you, right here with you, let us know what the scans show is causing the pain so that if any we can brainstorm and suggest other options (since he is BRAF negative I am thinking outside of my box others might have more advice with regards to this than me) you are in a top place at Moffit!!!! and indeed I know they do offer TIL at but for now the most important thing is that his pain is managed and that hopefully someone gets YOUR back too, to support you so you can support Brent better, virtually we are holding you both so do not hesitate to ask and vent as much as you need,
all my love and good vibes, you will be in my thoughts, PatiJanuary 30, 2013 at 7:52 pm #58867Shirley ZParticipant
So sorry to hear this Sharon. Hope he gets the pain under control soon.
You have both been such inspirations to all of us here.
My thoughts and prayers are with you.
Shirley ZJanuary 30, 2013 at 9:49 pm #58868
No one should be in pain, there are so many advances in pain management, so be the excellent advocate you are and make sure all options are explored. I did find out (and emailed you) that radiation during the trial wasn’t allowed, so he would have to go off of it for the radiation. But since the PD1 stays in the system a while, maybe this is the route to do to get the tumor under control, and most important, the pain. Keep in touch as we all care deeply for you and Brent.January 30, 2013 at 10:42 pm #58869
thanks everyone. doctors are here and he has had a pump to trial a under the skin pain relief. ct scan is real ugly. since nov 7 th scan all tumors have grown new tumor 3.5 in dome of liver they mention others. the cancer has eaten thourgh rib bone and a lumbar is broken and is on the spine nerve. they are talking about surgery and or radiation tonight and will be in for a consult soon.January 30, 2013 at 11:27 pm #58870 if i had mek on hand or could get it compassion should he start right away?January 31, 2013 at 12:34 am #58871PatWParticipant I know how tempting it must be to restart the MEK in the hopes that it might shrink his tumors. I had exactly the same thought when my brother’s tumors were growing again and I saw 3 big bottles of Zelboraf in his medicine closet. But PLEASE do not give him anything without consulting with his oncologist. The MEK may interact with or inhibit the other drugs they are giving him (including the pain meds). Or the MEK might provoke dangerous side-effects and if his doctors don’t know you’re giving him MEK they won’t be able to treat the side-effects properly. Do not give him MEK on your own.January 31, 2013 at 2:41 am #58872NYKarenParticipant Sharon,
I’m so sorry you’re both going through this. Has anyone been able to find out if the MEK is available for compassionate use?
KarenJanuary 31, 2013 at 7:58 am #58873
hi , thanks for all your replies. I just spoke to dr weber and he says he has nothing for him at Moffitt and I should try md anderson again. honestly i don’t think he …………… oh this hurts. Brent will be doing the cement in the back procedure to stabalize the fracture tomorrow and then on monday he is to start radiation. I cant think past the next hour let alone …..how to get him to Houston., I asked about mek as a compassion use and the answer was no from dr. weber, not available. when brent was on mek he had no side effects except rash. does anyone know about a mek mtor trial at nashville and or md anderson. God Bless you all for posting. You are my lifelines right now. I don’t want to give up and if we can get the pain under control we need to do something fast. the tumors are on a roll.January 31, 2013 at 11:39 am #58874GillyParticipant Hi Sharon – we are here for you – are you getting the pain under control – it is SO important that he be confortable – no one can focus when the pain is priority – sorry that he cant do any MEK at Moffat but the radiation hopefully will zap the worst of the tumours – I hope you have more than one hand to hold – did they get his spine cemented ? I am sure the others will be along soon with other trial locations (I am not in the States so I don’t know) – I hope you find a compassionate use at MD Anderson – dont give up but fight for him especially his pain relief – sending love and strength …January 31, 2013 at 1:01 pm #58875 I don’t know of compassionate use for anything these days, it just isn’t being done by the pharma. I’d take it a day at a time, get the pain under control with the radiation. He wouldn’t be accepted into any MEK trials because he is BRAF positive. Maybe you can get the COBAS test done though to double check. Also, see if he is NRAS positive. Sorry you are going through so much Sharon.January 31, 2013 at 1:34 pm #58876PatWParticipant Sharon, I am so sorry to hear all this. I sure wish I was there so I could give you a big hug. You really need some hugs now.
I think you have your priorities straight right now. First you have to get Brent’s pain under control. What good is extra months of life if that life is one of constant pain? Let the people at Moffitt do what they can (pain pump, surgery, radiation, etc) to get the pain under control before you even think about how to get him to MD Anderson. Meanwhile, if you like to have a Plan B in the wings, you could call the people you have dealt with at MD Anderson, describe what’s going on with Brent, and ask if there is anything they can do. You might have to get his records and scans sent from Moffitt to MD Anderson, so you could get that ball rolling, too. But don’t squander your energy thinking about long car rides or plane rides right now. Focus on the quality of life issues first.
If you are not signed up with a hospice organization, I suggest you talk to the Moffitt social worker and about that. Hospice is not just for the final few weeks of life, their mission is to help you and Brent right now. At least talk to them and find out what they can offer you.January 31, 2013 at 7:08 pm #58877
we talked to the oncologist and in his shape we need to wait for a trial. I know i have read here of folks who were pretty down and out and got a new treatment.
some had really good results. we are still looking ahead. he is mtor positive and i need help to find a oral mtor trial or combo. please is any one has the energy to send me some options to explore i would really appreciate your help.January 31, 2013 at 8:02 pm #58878
I found this MTor inhibitor that was approved by the FDA, so possibly you could get it prescribed off label: http://www.cancer.gov/cancertopics/druginfo/fda-everolimus
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