Granulosa Cell Reoccurance

On 8/12/2006 Annette1 wrote:

I am happy to report that I finished my trial with even better results than we could have hoped for. My PET at the end of treatment showed no metabolic activity in the full body scan. Although there are appearances of tumors, they are behaving as though necrotic. No one knows why I had such a positive response nor how long this will last, but for the first time in 19 yrs, we have evidence of having changed the course of the disease. My clinical study oncologists and my gyn/onc agree that I should let my body rest from all the drugs and enjoy this holiday! Of course, we hope that any recurrence is long in coming, but we also are optimistic that when this drug is available commercially, there will be a roadmap to treatment. I am happy to provide any information that might be useful. I actually published a book about my illness, so confidentiality is no longer a concern for me. Annette Leal Mattern, author, Outside The Lines of love, life, and cancer.

Hi Annette: On Jan 29th I had surgery to remove 4 GCtumours in my abddomen. This is my 2nd bout with granulosa, the first being about 4.5 years ago. I was pleased to read that you are having success with this trial treatment.

My oncologist and I have decided not to pursue chemo because of the low possibility of its effectiveness in preventing recurrence. At this point in time, I am looking at natural ways to boost my immune system in hopes of increasing my resistance to future recurrences. However, I would really like to remain optimistic that an effective treatment will be available to all of us with GCT in the future.

I would like to share this trial information with my Oncologist in the hopes that he can pursue further information for those of us with GCT here in eastern Canada. Is there a doctor/researcher's name that I can pass on to him? Or a link to the trial information? Anything you can provide would be very useful.

I pray that your treatment keeps your cancer at bay. You go, girl!!

Brenda

Dear Annette 

I am writing this mail on behalf of a relative, Mr. Satish Sehgal, who has mesenchymal chondrosarcoma, which started with a tumour in his arm (2 surgeries). He went through three cycles of chemo (Adriamycin and Ifosfamide) starting March '07, but it was not successful in controlling the cancer, and bone scans revealed extensive mets. Also he has some lung mets. His doctor (he was treated in New Delhi, India, and) has suggested the drug Apomab and has suggested that Mr. Sehgal participate in a clinical trial for this drug. I understand that the drug is in the Phase 2 trial and Genetec is the bio tech company that is sponsoring the trial. I found your name in a number of support groups and understand that you have benefited from this drug. Could you please let me know of possible (a) your treatment and (b) if there are any trials that you know going on for this drug and (c) anyone else that you know who has benefited from this drug.  The family is almost at their wits’ end and are very anxious to get whatever information they can about this drug and its efficacy and we would really be grateful for any information that you may be able to give.

Thanks in advance.

 Sincerely,

Monideepa

Monideepa Tarafdar

Toledo, OH

On 5/15/2006 Annette1 wrote:

Angie- I have good news for you. I entered a clinical trial in March because of tumors on the liver. This is a Phase 1 Clinical Trial of a new drug called APOMAB, for monoclonal antibodies. I'm in the 2nd group of humans to get the drug. I had low expectations of good results because this is truly experimental, has only been proved in lab dishes and animals. GOOD NEWS: My tumors have shrunk. Of 7 that I presented with 3 months ago, 5 are no longer detectable on the CT and the remaining 2 are reduced. The local oncologists are now referring more granulosa women to the study as a result of my progress. Here's the info in case this is an option for you: Rx Co: Genentec Drug: APOMAB Side Effects: Minor flu-like symptoms (headaches, achy) My dose is 4mg. New patients (as I understand) will receive higher doses. They are testing toxicity. This trial is being conducted in 4 cities across the country. Mine is in Scottsdale AZ. Your oncologist should be able to find info on it, but if not, let me know. I hope this is helpful. Good luck and let me know if you need more inf. Annette

I've had four granulosa cell surgeries and now within 3 years, I have a new CT scan which show large tumors including one on my liver. My onocologist is very interested in your trial, but in order for us to check with your oncologist we need name, the drug information my doctor requested was the FDA, IND#. I would appreciate any additional information so we could see what phase this testing is in and the cities. Perhaps my outcome could be successful too. Please help I'm desperate. Thank you, my email address is

if you contact me ASAP. carolyn

Inhibin isn't always an accurate measure of GCT reoccurance. The best treatment and diagnostic procedure is surgery, says my doctor. GCT is also famous for recurring years and years after it is first diagnosed. So if the tumors are in places they can reach, if it were me I'd have them removed and see if they are GCT. It is treatment and diagnosis all in one.

Best wishes,

Rachel 

On 7/31/2008 RachelaK wrote:

Inhibin isn't always an accurate measure of GCT reoccurance. The best treatment and diagnostic procedure is surgery, says my doctor. GCT is also famous for recurring years and years after it is first diagnosed. So if the tumors are in places they can reach, if it were me I'd have them removed and see if they are GCT. It is treatment and diagnosis all in one.

Best wishes,

Rachel 

On 8/8/2008 johnsc wrote:

 

On 7/31/2008 RachelaK wrote:

Inhibin isn't always an accurate measure of GCT reoccurance. The best treatment and diagnostic procedure is surgery, says my doctor. GCT is also famous for recurring years and years after it is first diagnosed. So if the tumors are in places they can reach, if it were me I'd have them removed and see if they are GCT. It is treatment and diagnosis all in one.

Best wishes,

Rachel 

 

Hi Rachel,

I agree, you don't want to put all of your focus on one single monitoring technique but I think it's important to point out two things.

1) Inhibin B is quite a reliable marker for granulosa cell growth. Studies show about a 90% correlation between rising Inhibin B levels and GCT recurrence[1].

2) Inhibin B is different from Inhibin A, which is far less useful[1]. For the last six years our doctor had been ordering "Inhibin" tests from the lab. Since the lab didn't know which he meant, they just defaulted to Inhibin A. It's no wonder that the Inhibin A tests didn't catch the recurrence which was far along by the time it showed up on a CT. Make sure your doctor is ordering Inhibin B tests.

[1] http://jcem.endojournals.org/cgi/content/abstract/83/3/1029?

Best,
John

On 9/12/2008 RachelaK wrote:

 

On 8/8/2008 johnsc wrote:

 

On 7/31/2008 RachelaK wrote:

Inhibin isn't always an accurate measure of GCT reoccurance. The best treatment and diagnostic procedure is surgery, says my doctor. GCT is also famous for recurring years and years after it is first diagnosed. So if the tumors are in places they can reach, if it were me I'd have them removed and see if they are GCT. It is treatment and diagnosis all in one.

Best wishes,

Rachel 

 

Hi Rachel,

I agree, you don't want to put all of your focus on one single monitoring technique but I think it's important to point out two things.

1) Inhibin B is quite a reliable marker for granulosa cell growth. Studies show about a 90% correlation between rising Inhibin B levels and GCT recurrence[1].

2) Inhibin B is different from Inhibin A, which is far less useful[1]. For the last six years our doctor had been ordering "Inhibin" tests from the lab. Since the lab didn't know which he meant, they just defaulted to Inhibin A. It's no wonder that the Inhibin A tests didn't catch the recurrence which was far along by the time it showed up on a CT. Make sure your doctor is ordering Inhibin B tests.

[1] http://jcem.endojournals.org/cgi/content/abstract/83/3/1029? " target="_blank" rel="nofollow">http://jcem.endojournals.org/cgi/content/abstract/83/3/1029? " target="_blank" rel="nofollow">http://jcem.endojournals.org/cgi/content/abstract/83/3/1029? " target="_blank" rel="nofollow">http://jcem.endojournals.org/cgi/content/abstract/83/3/1029?

Best,
John

 

My doctor was measuring Inhibin B. I recently asked him. I returned home from having 8 large tumors removed to get a phone message from my GYN ONC not to worry because my Inhibin B was so low.... Just to let people know these markers are not always reliable!