Patina

My Mom hadmost of those symptoms and diarrhea. Her doctors couldn’t figure out what was wrong with her either. She had every kind of test including a colonoscopy. She had travelers diarrhea. All she needed was a few pills and she was fine. Everyone thought it was related to keytruda, but it wasn’t.

My Mom hadmost of those symptoms and diarrhea. Her doctors couldn’t figure out what was wrong with her either. She had every kind of test including a colonoscopy. She had travelers diarrhea. All she needed was a few pills and she was fine. Everyone thought it was related to keytruda, but it wasn’t.

USC! USC! USC!  – I really can't recommend them enough! 

My Mom was diagnosed in 2013 eventually as Stage IV with 3 brain mets no less!  – She was orginally  misdiagnosed without brain mets by a radiologist of a doctor listed here!

She had gamma knife surgery in Beverly Hills and we only found out 4 months later that that doctor missed a brain met when the orginal surgery was done!  And the neurosurgeon she was seeing wanted to watch a new brain met rather than treat it. – We got a second opinion the next day and she had 17 brain mets treated 8 days later at USC by Dr. Eric Chang!

If it wasn't for USC and the team she had there is no way my Mom would be the person she is today. They have the right people to care for you no matter what's going on and they are at the top of their field.

My Mom ended up with 28 brain mets in total and with all that it is like she never had even one. She's 81 and does whatever she wants. 

Go see Dr. Hu and Kristi! 

Hi,

My bet is that it is a yeast infection. My Mom had thrush with Yervoy and a esophageal yeast infection with Keytruda. Got to a ENT or your doctor right away. Thrush is horrible. – Just miserable to have…

Beat,
Patina

Hi Mike,

I have 3 letters for you: USC. They are simply the best. And yes, get a second and even a third opinion. My Mom even had a fourth. That was USC.

My Mom was stage IV. Misdiagnosed by a number of doctors and then a radiologist missed the brain mets. The third opinion found them. A radiation oncologist “missed” one the day she had gamma knife for 8. – The treatment plan of the fourth opinion and the care at USC (the new radiation oncologist found 17! when someone else said she had a new one, but we should watch it)… Roller coaster!

Point of this is, find the best. Make sure they communicate and its best when the are in the same hospital and better yet same building.

My Mom’s doctor is Dr. James Hu. Her radiation oncologist is Dr. Eric Chang and her neuro-oncologist is Dr. Naveed Wagle.

She ended up with 28 brain mets, but you’d never know it. She’s 81 and is on a cruise in Alaska… She would not have had this outcome without getting the right doctors and the right team who worked together.

Good luck,
Patina

PS
My Mom’s original doctor at USC was Dr. Mike Wong. He left USC a while ago and was simply amazing! Dr. Hu took over and he’s been fantastic.

Steven,

Was/Is she on Keppra? 1000MG 1x @ night or 500mg 2x?

Hi Steven,

Where are you located and is your doctor a melanoma specialist? Has she seen a radiation oncologist? Has she had more than one opinion? – BTW  – No to whole brain radiation.

My Mom is 81. Has been Stage IV since late 2013. Had 28 brain mets zapped via Gamma Knife and a craniotomy and is doing great…  We had mixed results with doctors, but have a excellent team now at USC. She would not be alive without them. – And her radiologist is beyond fantastic. – He took care of 17 brain mets in 1 day. (Dr. Eric Chang, @ USC in Los Angeles, CA.)

Is your wife seeing the best?  And has anyone talked to you about gamma knife with an immunotherapy? – That really supper charged my Mom's treatment and we had a few issues, but really knew things were working almost immediately. (She's a miracle case.)

No side effects, unless being an eternal optimist is included.

Keytruda or Yervoy with Gamma Knife is very different compared to Keytruda or Yervoy alone.

Start by asking how bad this is.

My Mom had it while she was taking ipi. By the time I found out how bad it was she had colitis and it was bad. She had to stop ipi for some time ad when she got her 3rd dose she got it again…. 

She was had it up to 15X per day (she told her doctor on a Tuesday), while the day before she told be 7-8x per day.  – He knew when I said how much he would likely stop ipi the next day. And sure enough he did. She also almost landed herself in the hospital then. – Her colitis did get worse and she did end up in the hostital a few weeks later, but she was also very low on potasium the first time…

Be careful and make sure you know exactly how bad it is and that you get it under contro. – enamas were the only thing that really worked for my Mom. They were easy and very fast.

 

I'm sorry you canceled the appointent with Dr. Chang (Dr. Eric Chang at USC?). If there was anyone I'd have had your daughter see it would have been him.

If Kristine gets back to LA make sure she see's him.

Janis,

I'm so sorry to hear of your loss and the difficulties that Shane has had. It breaks my heart to hear that someone else has pass after a heroic battle.

My thoughts are with you at this difficult time.

Hi Cammeron,

Sorry you are dealing with this, it can be tough, but things have changed substantially in the last few years and there is a lot to be optimistic about despite the diagnosis…

Here is what I tell everyone: go to a center of excellence if you can, make sure you have a melanoma specialist (this is someone who primarily see's melanoma patients), make sure that you get CT scans, Pet Scans and a MRI of the brain, along with being tested for BRAF and that your doctor reviews the scans with you even if the radiologist says thing are clear with the brain, talk about a plan and then make a second and possibly third appoint with other specialists. (And get CDs and copies of all records to keep with you and take to appointments.)  – And make sure that you have followup MRIs of the brain on a certain schedule when in treatment.

In the past, something like 40% of the time melanoma will spread to the brain. For this reason I recommend that when you are looking for a doctor that you also find one associated with a good team a radiation oncologists. – With the new drugs this number has likely decreased.

The most important thing in all of this is to make sure you or a someone who goes with you to your appointments is great at taking notes and research. You or they can't be a passive participant in this, its not helpful.

The reason I mention the above is because my Mom was diagnosed at Stage IV without brain mets. – We found out about 3 weeks later than she had 3 brain mets and even I could see them on the MRI!  She went through 4 specialists and the 3rd found the mets, the other doctors never looked at the scans, but read the radiologists reports.

She went with her 4th melanoma specialist and his plan and treatment was at 2 facilities for about 4 months. 4 months in we knew she was doing excellent with the treatment (ipi/Yervoy), as the melanoma in her lungs, liver, kidney, adrenal gland, neck and scalp were all shrinking…But she was still getting brain mets and the neuro-oncologist said we shouldn't get treatment when a large met was found and he said he was "in a wait and see mode…" Her oncologist (and I) thought she needed another opinion and a new radiation oncologist saw here the next day. – He discovered the first radiation oncologist missed a brain met when she had had her gamma knife radiation treatment 4 months earlier and she had at least 5 new mets that could be treated.  8 days later she was treated for 17!

My Mom is 81 now and you'd never know anything happened and she is as active as someone in their 60's…  We would not have this result if we hadn't made sure we went to a few doctors and were looking at trials, or if we had stuck with the original radiation oncologist…  It's always good to question…

Good luck!

 

 

I agree. Sounds like he needs a brain MRI ASAP.

– Don't move forward with whole brain radiation. Find the best radiation ocologist IF its brain mets and get a second opinion.

Hi Cindy,

I can't imagine what you are going though. My Mom lives a little way away from me and when she was first diagnosed it was hard. But things are great now and really have been for almost all the treatment once we knew what was what..

If I were you I'd see if she could get a second opinion at USC if she comes out to see you in California. My Mom saw 4 melanoma specialists and hands down USC has the best doctors. I only wish we had moved all of her treatment there way back when, but we didn't know that the radiation oncologist and the neuro-oncolgist she was originally referred to were sub par.  – We were referred to them with the 3rd melanoma specialist discovered that my Mom had 3 undiagnosed brain mets… What!?

My point, it pays to shop around.

________________

Hi Niki,

You've probably said it somewhere here, but this is the first time I've noticed… Who's your doctor? My Mom started at USC in December 2013 and she had Dr. Wong (nicest man!) and now she see's Dr. Hu. She's also seen Dr. Chang, Dr. Wagle and Dr. Zada. Seriously the best team of doctors and I think they saved her life. – We had HUGE issues with misdiagnosis and un-diagnosed/treated brain mets before we got her to USC. 

She's going to be 81 this month and you'd never believe she had cancer. – She's going to be bit bummed that someone had more brain mets than her (28!) and is doing great. The woman wants to be the #1 Miracle Patient. Mothers…

And why te washourt period with radiation? Gamma Knife and ipi is a great combo!  My Nom had it 4 days after gamma knife. She had the abscopal effect. Very good!