jc2dad

Mark, the Dexamethasone seems to be helping and the headaches and dizziness are not as pronounced. Now, it is all the other hormonal issues that seem to be the issue, and of course, due to the steroids, the insatiable appetite. I have had the strongest sugar cravings ever, which when dealing with massive weight gain, doesn’t seem to help. LOL! I appreciate your reply and sorry you had to deal with this adverse reaction as well. I hope there are no long term effects to glandular function.

MRI’s have been good with the exception of the hypophysitis. Pituitary had swollen to the point it was affecting brain stem (suffered in misery for a week before I went to ER like an idiot). Endocrinologist called and set an appointment for next week so hopefully I can get on the top side of these hormonal issues soon. I appreciate your reply Celeste.

I agree N iki. I pray regularly for my care team, not only for skill in my treatment but also for hope and comfort in a difficult field of medicine.

Yes, me too. Imagine what a 10, 15 or even 20% increase in 5 year and 10 year survival rates can do for newly diagnosed when they begin their research. If the picture were not so bleak, so many would not feel hopeless.

Thanks Celeste.  I've been studying like a fool for the last few days.  Seems this mutation without NRAS is very rare bird.  

 

Niki…I will walk through hell and grab the devil by the nose if that is what it takes to beat this disease.

BTW Niki, I told Dr. Wong you said hello. He laughed and smiled and told me what a tough fighter you are. Said you had a special t-shirt made up for your races to let folks know they had been passed by a girl with Stage IV cancer. Love it!

My Oncologist stipulates that if something shows up (as I am NED) then all treatment options are on the table at that point MS or no MS. He feels that the adjuvant setting options we currently have available there is a greater risk of an MS or neurological flair up than any benefit to treatment. Lord willing I will continue to remain NED. Next round of scans in early October. Thanks for your reply.

Thanks for the response. The “diagnosis” in 2006 was a working diagnosis as imaging showed no lesions but symptoms of ME. Definitely had a neurological episode losing bladder and bowel control, hair and fine motor skill issues, cognitive issues, etc. Was observed by top MS doc in my region. Never anything via imaging or spinal fluid that nailed the diagnosis. Was given beta interferon and steroids and issue cleared up within six months back to normal. Had a small episode (exacerbation period) in 2010 and again last fall that lasted a few weeks both times and affected my fine motor skills.

Niki, Dr. Michael Wong is my onco.

Thanks Niki. I tend to think like you with regards to being aggressive. I also like to trust my gut. It has kept me alive in situations I should not have survived before. I wish you the best in your battle.