Granulosa cell tumors - recurrent

hI sikie,

I was diagnosed in 98 with GCT at the age of 28, since then I hv tried everything, including BEP, which was almost knocked me out. I guess you are in some hospital which is not really big and familiar with GCT, because most of the cancer centers wont use BEP for GCT anymore.

My surgeon told me surgery is not an option anymore because too many tumors, he is going to give me DOXIL again. I hd it in 2003, first worked then stopped. I feel so devasted as if he thinks I already live long enough.

As for fruits, any fruit is fine, they can not cure the cancer though.

Hugs Grace.

The doctor did say BEP is toxic :(  This is not the first time I read from forums that BEP don't really work with GCT so am thinking of bringing that up with the doctor when I go to see her tomorrow. 

I am 50.  Diagnosed in October 2007.  It will be 5 years this upcoming October.  Have already had three surgeries, the most recent May 2011, followed by chemo.  Had BEP and thought I was going to die or that they were going to kill me and were having great success.  My current Inhibin B is up to 17 - it was at less than 10 in March.  So, Im discouraged.  Apparently chemo did not work.  Disgusted that I tried it to no avail.  I did lose 60 pounds so call it a perk.  But at any rate, i wanted to comment on the levels and when a tumor can be seen on the CT.  If I recall correctly, with the first tumor my count was 900.  The next time around it could be seen on the CT with a count of 34 which is when I had surgery.  Waiting until it gets to 100 seems pretty high and a longer wait than necessary.  Unless of course, we all "count" differently and the count/CT sighting ratio is individualized.  Im going home tonight to pull out my books and am going to start a meat/dairy free diet.  Have to get my little one through HS before I go anywhere.  She starts 6th grade in the fall.  Tomorrow is my oldest daughter's grad party (HS and she got her Assoc in Science at the same time).  HUGE celebration.  Bad timing on my news...oh well, I will continue to move forward. 

Has anyone tried Midol for the period like cramping and did it help?

MEL, ILLINOIS

Hi Melissa,

I am so sorry to hear about your battles and having had to go through chemo.  I think you might be right in your supposition that an Inhibin B of 17 to one person might not be as serious as in a next.

I had surgery in late January 2012 and at that time my Inhibin was close to 100.  Three months later it is down to 50 and my doctor is happy.  I will be MOST anxious for the next level (due late July) to see if I've gone up or down.  If it's gone up I will probably be pretty darned mad but hopefully it will continue trending downward. 

I've been doing the no meat/no dairy type eating since Aug 2007 - not as a fanatic ....if someone invites us over and is serving meat I will eat it but I haven't bought any since we started.  I don't have the numbers but at the time I started that diet (Dr. J Fuhrman's Eat to Live book) I was one year out from my 2nd surgery and my Inhibin B bumped up (don't have the actual numbers unfortunately but know my doctor was concerned and wanted a CT).  Instead I asked for 6 weeks and went on the above diet.  My Inhibin B came down!!  I was ecstatic and ever so hopeful that I would not ever face surgery again.  But...6 years later I had 2 golf ball sized tumors and 2 microscopic sized tumors removed.  Incidentally, at the time my Inhibin B bumped up I had been under SERIOUS stress with my husband in the hospital near death.  I would buy him a hamburger to cheer him up and of course had to have one with him.  I would buy him a Dove bar...and again keep him company!....belly fat....stress..

Currently I am trying some wheat grass juice, alkalizing diet, spirulina (when I can stomach it) and lots of other nutrient dense, super foods.  I've also gone back to tennis for the first time in 12 years!

Please keep in touch and let me know how you are doing!  Sending all my best!

Starry

I have a question about your Inhibin levels. Are these numbers with a full hystorectomy? What should the numbers be if someone has had it done?

thank you

hi melissa,

which part do u hv cramping? when i hv cramping on my calve,  that means my postasium meganisium r low.

On Jun 30, 2012 3:03 AM StarryJones wrote:

Woops! Maybe you were asking Melissa if she has had a complete hysterectomy.

I was asking everyone! What does yourinhibin run?

On Jun 29, 2012 9:09 PM MelissaF wrote:

I am 50.  Diagnosed in October 2007.  It will be 5 years this upcoming October.  Have already had three surgeries, the most recent May 2011, followed by chemo.  Had BEP and thought I was going to die or that they were going to kill me and were having great success.  My current Inhibin B is up to 17 - it was at less than 10 in March.  So, Im discouraged.  Apparently chemo did not work.  Disgusted that I tried it to no avail.  I did lose 60 pounds so call it a perk.  But at any rate, i wanted to comment on the levels and when a tumor can be seen on the CT.  If I recall correctly, with the first tumor my count was 900.  The next time around it could be seen on the CT with a count of 34 which is when I had surgery.  Waiting until it gets to 100 seems pretty high and a longer wait than necessary.  Unless of course, we all "count" differently and the count/CT sighting ratio is individualized.  Im going home tonight to pull out my books and am going to start a meat/dairy free diet.  Have to get my little one through HS before I go anywhere.  She starts 6th grade in the fall.  Tomorrow is my oldest daughter's grad party (HS and she got her Assoc in Science at the same time).  HUGE celebration.  Bad timing on my news...oh well, I will continue to move forward. 

Has anyone tried Midol for the period like cramping and did it help?

MEL, ILLINOIS

Hi Melissa

Despite the hardship, I truly appreciate you sharing with us this information. We are all here for each other. I could lose the 60 pounds that would definitely be a perk.

I went back to the doctors and explained what was going on with me. One of my doctors wanted to immediately send me for a scan. I told her that my oncologist didn't seem to think I needed a scan at this point and it would do more harm than good for me.  She said, let me call him.

After I met with my oncologist, he sent me for a scan. I don't know the results but guess what ... My inhibin came back and my estradiol level too. As of third week in May 2012, I decided not take HRT. I honestly believe that is why my levels were great. I got a <2.6 on inhibin and a 12 on my estrogen level.  When I was actually sick with GCT, they didn't test my levels. I have no idea what it was then. After they washed me out and all of my lab washings came back clear, it is hard to believe I had cancer.  I want to catch it in the beginning and I am scared that one day I go to the office thinking everything is grand and they give me bad news.  When I had GCT, I felt fine until the night it ruptured. I didn't know I had anything inside me.

You mention levels are different for each individual. Well, I wonder if the labs are wrong. I find my self questioning this all the time. How is it fluctuating so much. I don't think the doctors know the ratio between the lab levels versus CT sighting. I anxious to hear the results of my scan. I have been hurting for a little and it doesn't seem to go away.

I am so sorry that you have had so many reoccurence. You and your family are in my prayers. I know how joyous it was to see your daughter graduate HS and college at the same time. She is VERY intelligent. You my dear, are blessed.

Please always remember we are here to listening to you  about anything.

TB in GA

P.S. My daughter uses Midol for her monthly, and she loves it.