Going to Md Anderson

Posted By
Anonymous
5/12/2014 9:51am
Activity
Replies: 6

Hello out there, I was first diagnosed with melanoma cancer August 2011.Stage 3, was in remission until recently. March 29th, 2014 , pet scan showed three places of concern.  Had a biospy done, April 13, two places, one near my right kidney, the other on the left side, then a biospy of the right lung done on April 23.2014.

Doctor is recommending a second opinion at MD Anderson, Housten, Texas.  I am from south alabama.  At this point I am now classified as Stage 4, M1B, becuase those biospy showed melanoma cancer, one in the lung, and the other two places.

 

Now needing informaiton on any new therpies out there before they send me for clincial trials.

the only two my doctor mention was Yervoy and interferon.  Suggestions would be most helpful at his time since I ave time to do reserach befofe I ravel to Housten.

Anonymous - (5/12/2014 - 10:24am)

I am sorry that you have  progressed to stage 4.Interferon is not prescribed for stage 4 parients,only  for stage 2 and stage 3.Also your tumors should be tested for gene mutations/Braf,Nras,/ to determine if you can benefit from Braf inhibitors-Dabrafenib,Vemurafenib.Then there is the IL-2  treatment and the immunotherapies  Yervoy and the Anti Pd trials/combos

 

Anonymous - (5/13/2014 - 9:52am)

You are right to look for new drugs and trials. MD Anderson has kind of lost that reputation of being so great.  You might try Sarah Cannon Research Institute in Nashville, they have a lot of new trials.

POW - (5/14/2014 - 8:01am)

I disagree that MD Anderson has "lost that reputation". It is stil one of the best melanoma centers in the world and would be one of my top choices for treatment.

That being said, I do agree that over the last 3 or 4 years more and more institutions have started taking melanoma seriously and enhanced their melanoma treatment centers and clinical trial programs. So now we have more excellent melanoma centers scattered around the country than we used to (including Sarah Canon). But that in no way takes away from MD Anderson.

POW - (5/14/2014 - 8:17am)

Your doctor was very smart to recommend that you consult with the melanoma specialists at MD Anderson and you are very smart to want to educate yourself about various treatment options before you go for the consult. But sure you write down your questions and bring another person to listen and take notes when you meet with the doctors-- it is common for the patient to be so emotionally involved in the conversation that they forget exactly what the doctor said as soon as they walk out the door.

The good thing about you researching clinical trial options now is that you are treatment naive. Patients are often frustrated because they found what looks to be a promising clinical trial only to be excluded because they already took ipi, for example, or they already had interferon treatments. There are a lot of clinical trials going on now testing combination treatments-- combining ipi with IL-2, for example, or combining radiotherapy with ipi. Then there are the single agent clinical trials for things like antibody-drug conjugates (ADCs). 

I suggest that you check out the clinical trials that are described on the MD Anderson web site and do your best to understand what each one is doing. Ask questions of us here, if you want to. That should give you a pretty good introduction to the types of clinical trials being conducted right now and you may find one or two that seem pretty good to you. Then, when you get to MD Anderson,  you can discuss those particular trilas with the doctors there.  

buffcody - (5/14/2014 - 6:59pm)

To POWs recommendations, I would also suggest getting to know the Stage IV forum for Melanoma International Foundation.  A number of very helpful Stage IV folks and an excellent director, Catherine Poole, as well as a team of medical experts who provide technical advice at Catherine's request.  Catherine is also reachable by personal email or phone if needed.

 

Jme - (5/16/2014 - 1:02am)

We are also from Alabama and just returned from MD Anderson.. Returning to Houston again next week. Stage 111- b/c.. Trying to finish testing and make decisions on treatment.. Best of luck with your care.

jme