Trials and how to choose

katenorwood

Hello everyone,

I'm wondering if anyone has any experience with choosing a trial for mets ?  I'm on a national waiting list for any matches for my specific tumor type.  But of as today none have been found.  I was given a name at the Mayo here in Minnesota that I will be checking out.  (trial specific for rare cancers but not ACC)  I was told the doctor in charge of the trial may be interested in my dx.  Still trying to wrap my head around all of it.  Most days I'm doing pretty good.  I've had the help of some wonderful young OT and PT techs that have made dealing with the lung issues easier to live with.  I get such joy out of visiting with these young people, and seeing the knowledge they are sharing for others to up our quality of life, and stay in our own homes. 

The issues with the lungs are a bit crazy.  I have most of the specialists scratching their heads.  This is in the lining of my lungs, and is wide spread.  No specific mass to attack.  (multiple noduals)  This didn't show up on an x-ray, in fact the x-rays were showing my lungs were clear.  It took a CT/with contrast for the beast to pop.  I had to really bark at the clinic to take me serious.  I'm pretty worn down with it all.  But still willing if at all possible, to try one more time to knock the beast back.  Any information you have to share would be very welcomed.  Hugs sent,  Katie     

CivilMatt

positive thoughts only

Katie,

I have no experience with your situation other than what I’ve learned here.

I will always be on your team, supporting your decisions with hopes for a positive outcome.

My best to you,

Matt

jackflash22

Are you sure

are you sure your hospital said METs. There is a rare tumour/tumours called Neuroendocrine, NETs it can affect several organs of the body including lungs. Some are very slow growing and don't show up in regular scans. I don't know about trials for this. I have neuroendocrines in my small bowel. They are small and grow to the lining. I had one grow over time to block my bowel. I had surgery to remove it but they said I had three more very tiny ones. I have since had neuclear scans and they aren't showing up. Whether they've disappeared or are too small to show I won't know. They are very slow growing and I could have them the rest of my life not knowing unless like this one thats just been removed gives me trouble. They are just leaving it to nature with six month check ups. They are very rare. what symptoms have you they can affect the hormonal balance. It's best you ask your doc what exactly is this type of cancer. I'm probably barking up the wrong tree in your case hope you find some trials

debbiejeanne

katie, i have no information

katie, i have no information but want you to know I'm praying for you to be blessed with something that will beat the beast.  you and rolie are always in my thoughts and prayers.  i hope someone can give you the answers you seek.

God bless you, dear Katie!

dj

wmc

Don't really know about trials

Sorry I really don't know about trials. I did check on some for COPD but never qualified. I thought it might help me and the study could help others. 

I wish there was a data base that you could look up trials for this illness. NGU and we are always for support and ptayers.

Bill

louhou13

Trial to look into

Hello, I do not post often but do read the posts. I was originally diagnosed in 2012 with a recurrance in 2013. In April 2014 I joined a clinical trial for MEDI4736 at The Angeles Clinic in Los Angeles with Dr. Ani Balmanoukian. 1 hour infusions 2X/month with practically no side effects (some itching for 2-3 weeks) The trial lasted a year and to date I'm NED. About MEDI4736: MEDI4736 is a human monoclonal antibody directed against programmed cell death ligand 1 (PD-L1). Signals from PD-L1 help tumours avoid detection by the immune system. MEDI4736 blocks these signals, countering the tumour’s immune-evading tactics. MEDI4736 is being developed, alongside other immunotherapies (IMTs), to empower the patient’s immune system and attack the cancer. 

I"m more than happy to answer questions if you would like. 

 

Good luck and God Bless

avisemi

Katie,
i have no info but

Katie,

i have no info but wanted to say hi and wish you the best. You will be in my prayers tonight. 

jcortney

Candidate

Katie,

There are quite a few PD-1 / PL-1L trials going on right now.  Was your original diagnosis SCC?  If so, there are many currently running for all kinds of mets in the lungs.  I just qualified for one but I'm waiting to see how the methotrexiate continues to work.  My last CT showed shrinkage (makes you think of George Costanza from Seindfeld) so sticking with a therapy that is working rather than jumping in to one that is on 25-40% effective.  I have another CT on Tuesday so we'll see then.

But, in the mean time, if it was SCC there are many and shoot me an PM and I'll give you what I've got.

Joe

corleone

I don’t have any personal

I don’t have any personal experience with clinical trials, but from what I’ve seen, there are a few Immunotherapy Phase I studies recruiting. These are targeting various receptors implicated in immune response, like PD1, CTL4, OX40 or their ligands. Ideally a combined therapy (like PD1 and CTL4 or OX40), because the response is much stronger in terms of activating the immune response against tumor cells. The downside is that these are phase I studies, meaning that it depends what part of the study is enrolling (like escalation, or expansion). During escalation, they are trying to figure out the maximum tolerated dose, so you might end up with a sub-optimal dose. During expansion there is usually a requirement for mandatory biopsies, but the optimal dose is already known. In general Immunotherapy is well tolerated (better than classical chemo anyway); if unlucky you have some adverse events caused by flaring up inflammation. You should see if any of the above are available in your area.

Grandmax4

Hi Katie bug

Just wanted to say "hi" ...hope you find a trial to kick the beast to the curb...think of you often