Lddaughter

Hey there,

I am taking care of my mom the same as you are you dad right now. I think they should be checking the pituitary gland or an MRI to see if and thing is going on with that. 

Backstory, my mom was diagnosed Jan 2017, so a little over a year ago. She was incredibly sick with tumors on her kidney, adrenal gland, and infested in her liver. After almost a year on the TAF/Mek combo her tumors had shrunk by over half! In Jan 208 she moved to immunotherapy (combo). After just 3 treatments she was hospitalized for low sodium. After each infusion she was on steroids to combat the side effects. That caused fatigue and weakness. After her 3rd she ended up with migraines and had to have an MRI which showed she had 3 tiny tiny brain Mets. She actually had SRS yesterday and today was good overall. 

The other thing the MRI showed was an inflamed pituitary gland seemed to be the issue for the migraines, not even the Mets. Hopefully they find out what is the issue soon! You are doing great. This forum is great so keep asking questions you want help for, everyone is great.?:)

-Aubrey

The TAF/MEK combo worked wonders on my mom! She went from laying on her forever bed back to my mom in a matter of weeks. We dealt with clots and large tumors as well so I know that look from the Dr.s well so keep both your heads up. The infusions were hard on her too and she also stayed in the hospital after her second immunotherapy session. Make sure you both keep looking to the future. Start talking about all the positives going on right now, keep fighting, and everyday something new will surprise you. 

Best wishes. He is one lucky guy to have the support system he has by his side. 

-Aubrey

Hey there,

Just want to give you our numbers for when my mom had her reoccurnace. She was stage 1 when she had a mole removed on her arm. They took some lymph nodes from the same side but that was the extent of that. 7 years later she had a LOT of symptoms for almost a year and just continually got worse until she spent a month extremely sick and that made her go in. She is stage 4 and her LDH was at 4,150.  

Her primary location is her liver and as she is being treated her LDH has turned back to normal. Not trying to downplay your concern at all, so please don't take it that way. I am just telling your our story of reoccurance. If you are seeing a reoccurance I wouldn't assoicate it to stage 4 until you get your PET scan on the 3rd.

Seems like your numbers are slightly elevated but nothing drastic and could be a number of  things.  I think anytime a patient has a concern or wants to see an oncologist when they had a history of cancer they will want to do a scan of some sort, as a pre-req of some sort because they can't tell you one way or another with out it. Just remember that this is pretty standard and try not to stress. You got this. 🙂

Thanks,

Aubrey

 I know this is a few days old so I hope you see this. I am the daughter of a melanoma patient. I am 27, have 2 boys and my mom is my best friend. In January she got sick, didn't really tell me the truth on how she was feeling. We lived 5 hours away and I was so engulfed in my own world bring pregnant with a toddler that I didn't think much of it other than her "being sick". Finally in late January when she was about to not go to her big 50th birthday bash because of it I knew something was wrong. I packed my toddler up and we went to visit Grandma.

When we arrived i couldn't believe my eyes. She was sick. She had an ultrasound and CT scan scheduled the next day but I knew it was bad. I have never seen her not able to run the show or take care of everyone, needless to say very new to me. The following day we found it was bad – liver, kidney, and adrenal gland. The liver was 3x it's normal size and basically shutting down. We spent the next month doing tests and scans before getting a stage 4 melanoma cancer diagnosis. That day I packed her bags and brought her to Kansas City to live with me and get her to a specialist. 

She got worse. The tumors stayed steady but they put her on oxy which knocked her out for days. I had to wake her to eat, drink. We finally started a treatment and within days she was feeling better. After weeks it was her turn to take care of me. She became head strong and acted like my mom again. Finally we talked to a counselor one day after a clinic visit. She broke down, was crying and explained how it affected her. All I could do was sit there and listen. Finally after she was done I just looked at her and said "I love you and it would have been worse having lost you". I would do it all over again. Because you may think you have to be strong, for everyone else but the truth is, if you are scared or feel alone you aren't. I don't know the age of your children and I can understand if they are much younger but don't be afraid to let them in. You are not alone in this journey. I pray you get the best news you can get. Don't slack on the follow up scans, that is what hot my mom 7 years later. Good luck to you and your family.