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One follow on if I may: supposing Right to Try does take the FDA out of the equation, what becomes of the data the FDA would normally have captured?
If a drug is experimental and currently has NO FDA approved uses (ie this is not an off label request) is the process different?
How are hospital IRB's involved in this process? If a patient and his doctor request a trial drug does it always (or never) go to the IRB?
In early onset cases, I really start thinking about germline genetic testing. This can identify inherited mutations that might be driving the cancer and have a target that drugs might work against.
This is a perfect place to vent and you're doing the right thing by asking for help.
By adding to each conversation we build up a knowledge base which others will find useful, Everything is helpful. I want people to feel that Smart Patients can build information.which is easy to find.
This life we live, as Stage IV cancer patients, inevitably has short periods of high anxiety and longer periods of, hopefully, mild anxiety.
I got into a clinical trial that used the same drugs, which are targeted at the tumor mutation we found through the Know Your Tumor program so I declined the drugs.
We know we will eventually succeed. And the more who join this change, the quicker it comes.
We can see the change occurring right before our eyes, because WE are the change.
You are such an inspiration! You've proven you have a great partnership with your doctor and I'm glad you trusted your instincts.
Was I wrong! According to the head to thigh MRIs, PET and CT scans this week, it worked dramatically!
You need to find a good rheumatologist. The same thing happened to me.
I am so happy that I joined this website. I feel that now I can talk to someone that knows where I am coming from.
When I hit the 10-year mark, I felt like I had conquered a continent (at least).
Thanks for the inspiring stories, they're very encouraging. In spite of many setbacks along the way, you've survived.
He did blood tests then called me in a panic saying I might have Multiple Myeloma or Lymphoma and put me through 2 weeks of hell going through all kinds of tests only to be told I have Sjogrens!!
With so many new therapies and drugs coming up in the cancer world, many cancers are being beaten that weren't so much previously.
Those thoughts are common with postpartum mood disorders, mama. They really are. Many of us have felt the same way.
This is a good site to go to for conversation and support. If you put a search for "caregiving" in the search box at the top right corner of this page you can probably find other conversations about this.
I went on Sutent in August of 2016 and have not had a brain met since June of 2016.
Volunteer, a few hours a week is a great way to escape the 4 walls of the home, and there are plenty of organizations loving for people to help them out.
For the first time in a long time, we are making consistent progress forward in treatment for mental health needs.
Does 10 minutes do much for my physical health? Maybe or maybe not. But at least it keeps me in a consistent routine.
The port saves her veins which chemotherapy will destroy in time.
We do what we can with what we have. It stinks, but I try to focus on what I'm still ABLE to do, not what I CAN'T do.
just being in the same room with people you KNOW understand and empathize with you is like having a weight lifted off your shoulders--"I'm not alone"
Look forward, not back. Much love
You don't have to go into detail about what is in your dreams/thoughts. You can simply say you recognize that you have many of the symptoms of PPD. If you want to print out the checklist from Postpartum Progress and take it with you, that really helps you when you can't find the words.
The biggest thing you can do for yourself is listen to your body, no matter what they say.
I just wanted to point out that good things can come out of the awful that is PPMDs, and becoming a bit of a psychological Rambo might be one of them. :)
tomorrow - let's see
The skin barrier makes a watertight seal that prevents evaporation of water from the skin’s surface. Dry skin happens when there’s a defect in the barrier that allows excess water to evaporate into the atmosphere.
I strongly believe in clinical trials and advancing the science through participation whenever possible.
If no one has told you yet, the best treatment for lows is fast acting sugar. I keep small juice boxes in the car, by my bed & in my purse.
Equally important, finding out how the patiently really wants to live out the rest of her life, and giving her options to achieve that.
I am impressed that you are asking us this question, no doubt you will receive a lot of different answers. We all have different needs.
You have to keep telling yourself "information is power."
I have one thing to say to all of the Care Givers: THANK YOU
I feel like it's my opportunity to advocate for all the families that are seeing changes with the full knowledge that at any point it could be us.
Please stay connected and I'm certain you will find advice that is helpful. We are all rooting for you!
I've found that the support of people who can relate to and understand you, is some of the best therapy
when the end of a loved one's life comes the memories are the precious tools that we strive to remember in our mind and our hearts forever.
I'd like to know if how PAA relates to Right to Try, if at all, and whether the FDA will capture data from the program.
I'm kicking off the Ask the Expert discussion about compassionate use/expanded access. There are many issues to talk about — that’s why the Division assembled a Working Group on Compassionate Use and Pre-Approval Access three years ago!
Your oncologist is doing you a terrible disservice by not recommending clinical trials.
I definitely need to remember to take regular breathers to slow my mind down and focus as far as possible on the now rather than the what ifs.
Even with a great rheum, it may still be a frustrating process, but at least your chances are higher of getting somewhere. Hang in there!
I have found that writing a letter to the primary doc in a given situation about how my symptoms and medications impact my quality of life (prior to a scheduled appointment) can be very helpful.
Has your Dr done a Stratify blood test for the JC Virus? It will tell you how high your antibody count actually is and whether it might be safe for you to take Tysabri for a year or two to knock down inflammation in the central nervous system.
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