kylez

I suffered from debilitating fatigue with an adverse event similar to but not necessarily the same as Mat and Chris describe above. Not pituitary inflammation in my case. Yes on: hyponatremia (low sodium), nausea, exteme fatigue (sleeping 11-12 hours), muscle soreness and progressive weakness. Was barely able to work 2 hours/day towards the end prior to diagnosis.

After 3 weeks or so was getting in bad shape. Turns out it was secondary adrenal sufficiency (SAI), an autoimmune reaction had killed off a single function in my pituitary, the production of ACTH. With that, no cortisol was made by adrenals, and I had the progression of the symptoms above. Not everyone with SAI has the same set of symptoms. The treatment is a “biological replacement” dose of hydrocortisone tablets twice a day.

For my part if it went on much longer I think I’d be in a major health crisis beyond the symptoms above. While it doesn’t sound like the exact same situation as you are dealing with it could be something similar and possibly involving the pituitary and/or adrenal glands. No experience with thyroid issues knock on wood. Aree with Mat to get your ACTH and also Cortisol blood levels tested, ideally in the care of an endocrinologist if possible.

I hope you are able to find relief soon.
-Kyle

Glad some of your other pituitary functions are coming back online. 

I got hit by hypophysitis with the combo too, but just ACTH deficiency, in September, so no cortisol. I was gradually on my way to an adrenal crisis, but not quite. So far cortisol is still zero, get tested again in a month. I imagine that if I start getting moon-faced, then maybe my pituitrary ACTH came back online but the ACTH stim test results also showed the adrenals were atrophied for cortisol production, due presumably to disuse from the pit not signaling them, so that would be 2 things to come back online.

I take 15/5 mg hydrocortisone when I get up and then at 4pm which seems to work well enough for me, the right dose must be an indivual thing. It definitely helps with arthritis in my knee, so that's one on the plus side.

You might want to look for a psycho-onlogy practice. They're going to be more attuned to cancer-related issues than most normal therapists. For example, http://cancer.ucsf.edu/support/psycho-oncology/ I think some of what you describe (worrying about your children) is something they have worked with other patients about. It sounds like it would be worth pursuing.

Hi Josh,

Good luck to you, and good luck to your armies. One thing's for sure, your body's never seen an army quite like this. I hope today's an up day.

-Kyle

Hi Josh,

Good luck to you, and good luck to your armies. One thing's for sure, your body's never seen an army quite like this. I hope today's an up day.

-Kyle

Hi Josh,

Good luck to you, and good luck to your armies. One thing's for sure, your body's never seen an army quite like this. I hope today's an up day.

-Kyle

In 2016 MRF sponsored a paper I mentioned on a different message the other day, "Melanoma Central Nervous System Metastases: Current Approaches, Challenges, and Opportunities." It has a section on leptomeningeal disease (LMD). While including discouraging historical stats, it mentions a new recent trial for LMD patients, with the LMD arm getting intrathecal T-Cells / TIL + intrathecal IL-2. The trial info is at: https://clinicaltrials.gov/ct2/show/NCT00338377. The location is at MDA.

The MRF paper is here, with a link to read the full article: http://onlinelibrary.wiley.com/doi/10.1111/pcmr.12538/abstract

In 2016 MRF sponsored a paper I mentioned on a different message the other day, "Melanoma Central Nervous System Metastases: Current Approaches, Challenges, and Opportunities." It has a section on leptomeningeal disease (LMD). While including discouraging historical stats, it mentions a new recent trial for LMD patients, with the LMD arm getting intrathecal T-Cells / TIL + intrathecal IL-2. The trial info is at: https://clinicaltrials.gov/ct2/show/NCT00338377. The location is at MDA.

The MRF paper is here, with a link to read the full article: http://onlinelibrary.wiley.com/doi/10.1111/pcmr.12538/abstract

In 2016 MRF sponsored a paper I mentioned on a different message the other day, "Melanoma Central Nervous System Metastases: Current Approaches, Challenges, and Opportunities." It has a section on leptomeningeal disease (LMD). While including discouraging historical stats, it mentions a new recent trial for LMD patients, with the LMD arm getting intrathecal T-Cells / TIL + intrathecal IL-2. The trial info is at: https://clinicaltrials.gov/ct2/show/NCT00338377. The location is at MDA.

The MRF paper is here, with a link to read the full article: http://onlinelibrary.wiley.com/doi/10.1111/pcmr.12538/abstract

Another thing — a ranking of US neurosurgery programs. This is the only one I know of. http://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgery

I had a great experience getting neurosurgery (double craniotomy) at the one currently ranked #5 on the list (UCSF). 

Another thing — a ranking of US neurosurgery programs. This is the only one I know of. http://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgery

I had a great experience getting neurosurgery (double craniotomy) at the one currently ranked #5 on the list (UCSF). 

Another thing — a ranking of US neurosurgery programs. This is the only one I know of. http://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgery

I had a great experience getting neurosurgery (double craniotomy) at the one currently ranked #5 on the list (UCSF). 

Hi Maggie,

I'm sorry you got this news and setback. 

Have your docs talked about temporarily removing the implant? Saw this article here, http://www.ncbi.nlm.nih.gov/pubmed/23364345 . Don't know if that applies to all implant types or is practical or impractical for other reasons. 

I don't remember seeing the article before, weird since MRI is a sponsor. http://onlinelibrary.wiley.com/doi/10.1111/pcmr.12538/abstract;jsessionid=E441E37754D48B97DF80C791A0256B49.f04t02 . None of it may be particularly useful for treatment for someone dealing with brain mets today, which unfortunately has brought you into it. Any article that talks about brain mets seems to have to bring up dismal statistics, which are likely based on old data before some of the new recent treatments. The abstract is:

Melanoma central nervous system (CNS) metastases are increasing and the challenges presented by this patient population remain complex. In December 2015, the Melanoma Research Foundation and the Wistar Institute hosted the First Summit on Melanoma Central Nervous System (CNS) Metastases in Philadelphia, Pennsylvania. Here, we provide a review of the current status of the field of melanoma brain metastasis research; identify key challenges and opportunities for improving outcomes in patients with melanoma brain metastases; and set a framework to optimize future research in this critical area.

There is a link to the full text. One thing that was interesting in the full text was that a couple of times they point to PI3K drugs as being particularly promising for brain mets. As far as I know none are approved, if that's right they only can be accessed in a clinical trial, which is then complicate for patients with brain mets to get into unless brain mets are stable, which when combined with a washout process are difficult. The article also talks about the difficult of patients getting into clinical trials. 

I'm a fan of Gamma Knife. If your docs think it's appropriate for you, I hope the cochlear implant issue doesn't interfere. Again sorry to hear about this.

– Kyle 

Hi Maggie,

I'm sorry you got this news and setback. 

Have your docs talked about temporarily removing the implant? Saw this article here, http://www.ncbi.nlm.nih.gov/pubmed/23364345 . Don't know if that applies to all implant types or is practical or impractical for other reasons. 

I don't remember seeing the article before, weird since MRI is a sponsor. http://onlinelibrary.wiley.com/doi/10.1111/pcmr.12538/abstract;jsessionid=E441E37754D48B97DF80C791A0256B49.f04t02 . None of it may be particularly useful for treatment for someone dealing with brain mets today, which unfortunately has brought you into it. Any article that talks about brain mets seems to have to bring up dismal statistics, which are likely based on old data before some of the new recent treatments. The abstract is:

Melanoma central nervous system (CNS) metastases are increasing and the challenges presented by this patient population remain complex. In December 2015, the Melanoma Research Foundation and the Wistar Institute hosted the First Summit on Melanoma Central Nervous System (CNS) Metastases in Philadelphia, Pennsylvania. Here, we provide a review of the current status of the field of melanoma brain metastasis research; identify key challenges and opportunities for improving outcomes in patients with melanoma brain metastases; and set a framework to optimize future research in this critical area.

There is a link to the full text. One thing that was interesting in the full text was that a couple of times they point to PI3K drugs as being particularly promising for brain mets. As far as I know none are approved, if that's right they only can be accessed in a clinical trial, which is then complicate for patients with brain mets to get into unless brain mets are stable, which when combined with a washout process are difficult. The article also talks about the difficult of patients getting into clinical trials. 

I'm a fan of Gamma Knife. If your docs think it's appropriate for you, I hope the cochlear implant issue doesn't interfere. Again sorry to hear about this.

– Kyle 

Hi Maggie,

I'm sorry you got this news and setback. 

Have your docs talked about temporarily removing the implant? Saw this article here, http://www.ncbi.nlm.nih.gov/pubmed/23364345 . Don't know if that applies to all implant types or is practical or impractical for other reasons. 

I don't remember seeing the article before, weird since MRI is a sponsor. http://onlinelibrary.wiley.com/doi/10.1111/pcmr.12538/abstract;jsessionid=E441E37754D48B97DF80C791A0256B49.f04t02 . None of it may be particularly useful for treatment for someone dealing with brain mets today, which unfortunately has brought you into it. Any article that talks about brain mets seems to have to bring up dismal statistics, which are likely based on old data before some of the new recent treatments. The abstract is:

Melanoma central nervous system (CNS) metastases are increasing and the challenges presented by this patient population remain complex. In December 2015, the Melanoma Research Foundation and the Wistar Institute hosted the First Summit on Melanoma Central Nervous System (CNS) Metastases in Philadelphia, Pennsylvania. Here, we provide a review of the current status of the field of melanoma brain metastasis research; identify key challenges and opportunities for improving outcomes in patients with melanoma brain metastases; and set a framework to optimize future research in this critical area.

There is a link to the full text. One thing that was interesting in the full text was that a couple of times they point to PI3K drugs as being particularly promising for brain mets. As far as I know none are approved, if that's right they only can be accessed in a clinical trial, which is then complicate for patients with brain mets to get into unless brain mets are stable, which when combined with a washout process are difficult. The article also talks about the difficult of patients getting into clinical trials. 

I'm a fan of Gamma Knife. If your docs think it's appropriate for you, I hope the cochlear implant issue doesn't interfere. Again sorry to hear about this.

– Kyle