Any success with Immunotherapy clinical trials?

hi

I'm so sorry to hear about you and your mother but wanted to tell you that I participated in an immunotherapy trial at Johns Hopkins with Dr.Leisha Emens two 1/2 years ago and have been stable since the trial. I have multiple bone mets and I'm er pr +. The trial consisted of four cycles over about 7 months and though demanding time wise was relatively easy. If you want more info please pm me.

Kristin

Sunny - One other approach is to contact the NIH and get your mother assessed for their immunotherapy trials. They have many. Along with the trials that Cure-ious mentions, this is one that is on my short list.

Immunotherapy Using Tumor Infiltrating Lymphocytes for Patients With Metastatic Cancer

If you approach the NIH contacts mentioned in this link, they will assess your mother for all the trials they have and give you their advice on how to proceed. It will require travel to Maryland that you have to pay for the first time but after that everything is covered, or so I believe.

You do not mention the extent of your mother's metastasis, but as a rule, few people die within 3 months of diagnosis unless mets are very extensive. This seems unlikely if she was only recently stage II. The doctor sounds like a dork who is setting you guys up to make himself look like a hero for "keeping your mother alive". It's a thing that the stupid doctors do. Find another.

In general you want a primary care doctor and at least one second opinion the whole way, no matter how wonderful your primary care doctor. Cancer is complicated. If things are this serious as you suggest, you need to find two more doctors.

>Z<

Chemo may be a good idea first. However scary chemo may seem, fast growing cancer responds extraordinarily well to chemo.

The problem with trials is that they take a while and you need to research, get evaluated and build a relationship with the group before you can get started. I know that at least the NIH will do this before you actually need the trial so that you are all setup for the next step in treatment. You should start research immunotherapy for her NOW because is an important option for a triple negative patient down the road.

However ... and I will be more blunt ... get your mom on appropriate chemo asap. And you don't have time to shoot in the dark. You need a chemo sensitivity test and you need a very specific kind of chemo sensitivity test. Get a live biopsy (this is a one gram sample of LIVE tissue) and send it to the Weisenthal Cancer Group. The other is Dr. Nagourney, both are awesome but Dr Weisenthal taught Dr. Nagourney so my personal choice will be to go with the the teacher. Here is a TED talk by Dr. Nagourney for some background on chemo sensitivity testing (done right).

The are both on other side of the country unfortunately, but there are only two labs in the country that do chemo sensitivity testing properly. The sample is hard to get and must be handled in a very specific way to keep the cancer cells alive.

I still don't like your doctor. There is a way through this for you mom if you take the right attitude. By putting a 3 month expiration date on your mom, her doctor seems to be saying ... give up and put her in hospice. It seems you like and respect your doctor, and I am very happy to hear that, but even the good ones mess with your head. ... the message to you is give up and stay out of this there is not much we can do here. This gives the doctors space to deal with a difficult, crisis situation. I get their strategy, but I believe you have a good shot at many years with your mom if she wants to fight. It's a tough tough road but personally I like living. I would not give up. I think your doctor is a asshole for suggesting your mom has no hope.

The treatment options for triple negative have actually made more progress in the last year than other types of MBC, but I don't think most oncs have the nuts to push into the frontier. You need triple negative specialist at a research hospital, ASAP. Find an NCI center near you. Any one of them will do.

Keep in touch. There is a triple negative forum that you should join, but I would love to know how you do.

>Z<