Found Info About Treatments? Share it here!

With so many people out there, with so much knowledge and so much desire to help... we know that you might be inclined to do some Googling (at 3 am?) and research on Mike & Danna's behalf. If you find something you think may help them in any way-- post it here. All efforts are truly appreciated.


Anonymous said...

Links to trial info... don't know if any of them would be appropriate.

Trial Info


Mass General/Harvard

Susan said...

Neuroendocrine Clinical Center at Mass General - has lots of info, it seems

Susan said...

Danna: This website has a questionnaire that you fill out re: Mike's background and then it gives you a ton of potential trials. I winged it and got a lot of responses... but you could definitely be more accurate than me. It had lots of info...

Veritas Clinical Trial Database...

Susan said...


Danna: i've accumulated a bunch of info for you at a page from my UD account. Go here to check it out:


Low-down: It was approved for treatment of tumors by the FDA in 2001. Is currently being used at over 100 locations around the world. Can be used for craniopharyngiomas according to several hospital sites I checked out.

ALSO... you may want to check out the Sinai Cyberknife Stereotactic Center (in Baltimore). They're the closest facility, are a training facility AND have been doing them since 2003.


ALSO: you may want to look at the Cyberknife Patient Support Group:

Susan said...


Just wanted to let you know that Craig is familiar with this technology (his company makes a related device used for other surgeries)... he is going to do some digging around too... -Susan

The Brain said...

Thanks, Susan. It sounds similar to what mike will be getting, but not through a robot arm. Let's ask Evans about it.

Anonymous said...

The latest radiation for brain tumors is...Cyberknife. One located near Philly. Someone...look it up for Danna, please.

Anonymous said...

Cyberknife in Havertown near Philly


I found a cyberknife you guys are talking about in Havertown, outside of Philly. It is called the Cyberknife Center of Philadelphia.

Perhaps someone can get the info. On the map it looks pretty close; closer then Baltimore, for sure.

David and Andrea

The Brain said...

Ok, all you cyberknife fans... it's not used for the kind of tumor that Mike has. Diana and I researched it yesterday. From what we can gather, it's for extracranial tumors.

Francine said...

Hi Danna: I don't have many details, but I saw a story about a woman with diabetes insipidus on the Discovery Health channel. Hers was a result of a head injury, but in any case, she uses a spray of vasopressin (?) twice daily, and she lives a fine life. So, at least there seems to be a longterm medication out there if that part of all this doesn't go away.

The Brain said...

Thanks, Franny. He's on the nasal spray (DDAVP) as well as hydrocortisone, and levoxyl (thyroid).

They have gotten the DI under control now and the sodium is ok again. So now the issue is the pressure in the brain i guess.

Susan said...

Expression and growth dependency of the insulin-like growth factor I receptor in craniopharyngioma cells: a novel therapeutic approach.

Published: Ulfarsson E, Karstrom A, Yin S, Girnita A, Vasilcanu D, Thoren M, Kratz G, Hillman J, Axelson M, Larsson O, Girnita L.

Department of Neurosurgery, Institution for Surgical Sciences, Stockholm, Sweden.

Craniopharyngioma is a rare benign intracranial epithelial tumor that, however, often recurs and sometimes kills the affected patients, one-third of which are children. In many cases, the patients acquire growth hormone deficiency and postoperatively need substitution. Generally, growth hormone promotes local release of insulin-like growth factor I (IGF-I), which in turn activates the IGF-I receptor (IGF-IR) if present. Together, these circumstances raise the question whether IGF-IR may be involved in craniopharyngioma growth. To address this issue, we analyzed phenotypically well-characterized primary low-passage craniopharyngioma cell lines from nine different patients for IGF-IR expression and IGF-I dependency. Two of the cell lines showed no/very low expression of the receptor and was independent on IGF-I, whereas five cell lines exhibited a strong expression and was clearly contingent on IGF-I. The two remaining cell lines had low receptor expression and IGF-I dependency. Upon treatment with an IGF-IR inhibitor, cells with high IGF-IR expression responded promptly with decreased Akt phosphorylation followed by growth arrest. These responses were not seen in cells with no/very low receptor expression. Growth of cell lines with low IGF-IR expression was only slightly affected by IGF-IR inhibition. Taken together, our data suggest that IGF-IR may be involved in the growth of a subset of craniopharyngiomas and points to the possibility of the involvement of IGF-IR inhibitors as a treatment modality to obtain complete tumor-free conditions before growth hormone substitution.

PMID: 16000560 [PubMed - indexed for MEDLINE]

Susan said...

Actualization of treatment options in Craniopharyngioma: a comparative analysis of different therapeutic modalities.

In this manuscript, the authors review current treatments of craniopharyngioma, focusing on new trends and making a comparison between them and the classical surgical approach. Modern treatment options include radical or conservative surgery, radiosurgery, external beam radiotherapy, interstitial radiotherapy, stereotactic cyst aspiration and interferon. Differences in tumor size, location and shape, as well as other circumstances like recurrence and previous treatments, should preclude the neurosurgeon to decide the best options in each patient.

GO HERE TO READ MORE: http://www.wfns.org/principal_reviews5.html

Susan said...

I found a lot of info about Work-up, Treatments, Follow-Up at this website. Since I don't understand most of the words re: cell structure and stuff, i can't be sure that it relates completely, but it may make sense to you and Dianna...

eMedicine: Craniopharyngiomas


Peter said...

Here's a link to a very good review article from the in-house journal of American Academy of Neurological Surgeons about various surgical strategies for resections of craniopharyngiomas. (Which I'm sure Dr. Andrews is fully familiar with.) Although it's focused on children, it is still relevant. It has a couple of .mpg's showing successful resections by two of the dozen or so routes it reviews. It's pretty satisfying watching the tumor masses be drained and then removed, although they're obviously not so densely adherent to vital structures like Mike's is. Mike's intial surgeries, though the trans-sephenoidal route, are reviewed. The use of a dental mirror to check for remaining tumor mass in the various nooks and crannies is amazing.


Mary Fritsch said...

Are anti-tumor drugs being used as part of the course of therapy? If not, could they be used? Some examples Temodar (temozolomide) a drug that crosses the blood-brain barrier. Have they considered direct delivery of chemotherapy to the tumor whereby neurosurgeons place disc-shaped drug wafers called Gliadel Wafers in the cavity of where the tumor is since they cannot remove it.

When Mike reaches the radiation point another radiation to consider is Gamma Knife (high intensity radiation beams to the tumor) and less damage to surrounding normal brain tissue.

Mary Fritsch said...

How soon will Mike be able to get this stereo-radiation? Seems that is most critical in what I am reading up on - I think you said he would have to clear these infections and his numbers have to be stabilized and you are more intimately involved with what can be tried at this time so bear with me here.

Have they considered taking the risk to at least do one rotation of radiation therapy to relieve some of the pressure on the brain? At this point, it would seem that some risks on their part are necessary to keep trying different options until something works.

Just some thoughts.

The Brain said...

Thanks, Mary - the radiation he will be receiving is gamma knife - delivered through a different mechanism that is even more precise that traditional methods. I think chemotherapy administered directly to the tumor is not an option for us because of the extreme risk it poses to Mike. The tumor is literally wrapped around the optic nerves and attached to the corotid artery and the hypothalamus. Our goal is not just keeping mike alive, but protecting (and hopefully restoring) neurological functioning. In fact, I would say that the latter trumps the former - in both my opinion and Mike's.

Andrews and Evans are in agreement with your basic suggestion that radiation needs to start asap. I believe the plan is not to wait for full cultures on the sample they drew, but to just get preliminary reports back on the nature of the fluid in the brain. I will check tomorrow on the plans for radiation and get on them and the timeline.

thanks so much. love you, danna

Anonymous said...

Dear Danna,
I have been thinking about your situation and the burden you must be under to make such difficult decisions -especially when you are getting such conflicting medical advice. My father is a doctor at the Mass General Hospital in Boston and I had him get the name of the top guy at MGH who handles these kind of cases. I thought it might be helpful to get a third opinion to weigh against the other two. If you wanted to come up here I would also be happy to put you guys up at our house.

The info is as follows:

Dr. Robert L. Matuza, MD
(Harvard Medical School, MGH Residency, MGH Fellowship.)
Clinical interests: Brain and Spinal cord tumors.

Phone: 617-726-8581
Fax: 617-726-4814
Email- rmatuza@partners.org

Rachel Gans-Boriskin