Monday, December 7, 2009

It's Been a While

I haven't posted in quite some time. It's now been almost 5 months since Alex's BLA. I had really hoped things would be better than they are at this point, but I can't really complain, or maybe I can....the weight loss stopped as quickly as it started. She gained 15 pound at the time of surgery and lost those over the past 5 months, but she hasn't gotten any lower. Her energy level is still bleak; she is losing a lot of hair, and having trouble with concentration. She has frequent headaches and has been having some GI pain.

We did run some labs and it looks like her female hormones and thyroid are tanking. Considering these are hormones produced by the pituitary I think she is going hypo pituitary. I was really hoping we had years before this happened. Anyway, we have a phone appointment with Dr. F. this weekend. I'm hopeful he will start her on some additional meds that will help out.

We went to UCSF on Friday for the yearly follow up MRI. We didn't see a doctor so I'm not sure how that is supposed to work. Dr. Kunwar ordered it for us, but they said we didn't need to see him. I sent the request to get the MRI on disk and to get the written reports from both radiology and Dr. Kunwar. Dr. F. had suggested prior to the BLA that if we went with a BLA she should probably have radiation as well, since the tumor was still visible on MRI a year ago. I've ignored the idea up to this point, but now I guess we will see what the new MRI looks like.


  1. Rene,
    Jess has finally quit losing her hair, not sure how long ago.
    She & Justin both have started on adderall. I think it's helping Jess. Justin seems wishy washy when I ask him. I may see if our doc will let him try a different drug.

  2. Hi Rene,
    So glad for the update, but sorry to hear Alex's status.
    My daughter,Jenny, who was diagnosed last June, but no tumors found, has been put on Adderall since concentration was a major problem for her and her studying. He also put her on a anti-siezure drug (starts with a T) to help her lose weight and in the last 6 weeks she has lost 20 pounds (although she does work out and watches what she eats). Don't know if any of this would be appropriate for Alex but you never know.
    Good luck with all the appointments. And again thanks for your blog it really helps me deal with this whole thing.

  3. I want to see if either Dr. F or her pediatrican will prescribe Adderall or something similar. I've actually alwasy thought she had ADHD, but blamed it on Cushing's, and hoped it would go away.
    Cheryl- Is the anti-seizure drug Topamax? Alex was on it for headaches. She had no weight loss on it.

  4. Yes, it is Topamax. Wow, I can't believe it didn't help with losing weight. Today Jenny broke out in shingles. Have you hear or experienced cushies getting shingles??

  5. I'm so sorry Cheryl, shingles sound awful. I can't think of any Cushies off the top of my head who have had shingles.
    When Alex took Topamax years ago it made her unable to sweat. At that age she was still well enough to play soccer and it was a dangerous situation. Her body temp would go way up and she would swell like a balloon on the field. She tried it agin recently and the tingling was so bad she quit taking it.

  6. Hey Rene,
    I'm sorry to hear things aren't going so great for Alex. I hope they can sort her meds out and get her feeling better. You'll both be in my thoughts and prayers.
    Take care,