MargoL.

On Apr 13, 2013 1:28 PM MelissaF wrote:

BEP is brutal stuff. I was hospitalised 5 times during treatment. Be vigilant with questionsand report even the smallest concerns you have. I ended up with neutropenia after my first full week. I did not realize how sick i was, i thought that what i was feeling was "normal". I truly thought they were trying to kill me and that they were succeding. But i made it and you will too. Hang in there Mel

Yes, I agree about it being brutal!  I just got out of the hosptial on Thursday.  My fever was to high and I could not stop throwing up...even with meds.  I felt fine on Monday and even went to school and taught all day.  But on Tuesday everything went south.  My WBC count was 1.5 it is on the rise now.  My chemo for next week has been put off until the following week due to my numbers being so low.  I will start getting the Nuelasta shot.  That should help.  At least it better...lol

Margo

Thanks Deb- but I am in a clinical trial so my chemo was chosen by a computer.  Bummer.  It has been very tough but I am staying strong.  This morning my hair started falling out by the handfuls so today after school I am going to buzz it off.  :(

Margo

Starry- I had my first cycle of chemo last week.  I am getting BEP and the nauseaous is dong me in.  This goes in 3 week cycles.  They are trying to control my nausea and hopefully the next cycle will go better.  Thanks for the message.

Margo

I thought I better write and keep my GCT friends in the "know" with what has happened since my surgery.  On Monday, Feb. 4th I had surgery for a reoccurrent GCT tumor to be removed.  They tought it could be done laproscopically but once in 12 other tumors were found and they could not get to the original turmor that we had been keeping track of for the last year that was by my colon.  So they had to open me up.  Yuck!  I was released on the evening of Feb. 11th.  Since the other tumors came back as GCT, once I heal, I have to start chemo.  I am going to be in a clinical study since there is not much out there for what is the best treatment of this type of cancer.  I am scared....because I have read what some of you have written about chemo and how it does not work.  I am also scared to lose all of my hair.  I am still extremely sore and emotional since the surgery, although I did work a half day on Friday, which was nice. If there is someone out there who could relieve my anxiety that would be great. Help!

Margo

On Jan 31, 2013 7:21 PM StarryJones wrote:

Margo, I feel so bad that I did not see your last post to me in late Oct!! For some reason my computer decided I did not need to receive these notifications anymore! So sorry!! Wow!! It has been a busy time...trying to learn more about food and its effects on our body, as well as other positive things we can do for ourselves like exercise, massage, meditation, etc. I've recently returned from CA and the arrival of the first granddaughter. What a joy!! And how hard it was to leave and be so far away!! Also just had my one year post op exam from the last GCT surgery that was done via the Da Vinci system. Apart from some adhesions all appears to be in good shape. Now awaiting results from the Inhibin levels. That has to be one of the most intense tests of our patience, doesn't it??? Anyway, sending you all my best and keep me posted with your latest chapter in your GCT novel! Starry

Starry, thanks for the message.  Today I go to Omaha, NE because tomorrow morning at 5:30 am I go to the hospital for my GCT surgery scheduled for 7:30.  This is my second surgery.  I am feeling a bit anxious since the turmor is next to my colon.  It will be interesting to see how much it has grown in two months since my last CT scan, and to see what my inhibin A level is.  In December my tumor was 26 mm and my inhibin A was 106.  My dr. asked me at least five times if I had my ovaries removed and I told him yes, that surgery was back in Feb. of 2008. He feels something must have been left in tact.  I don't know.  It is exactly 5 yrs. to the week since my first GCT surgery.  Interesting.  Wish me luck!

This blood clot you had and then finding out you had a tumor the size of a cantalope is horrible.  I just had my check up on Dec. 18th and my GCT tumor has grown to 26mm (the size of a shooter marble) from 19 mm in June. My inhibin b went from 68 to 105.  I was told by my dr. that someone like me with no ovaries the count should be 16.  So now I just have to decide when to have surgery.  I would like to put it off a couple of months due to my work/coaching schedule plus I am getting a student teacher, so having surgery right now is just not a good time.  My dr. said that I could wait a bit but he wants it before March.  He also said that if I have other tumors in me that he would recommend chemo.  After reading through these blogs and everyone saying it does not work, I am very hesitant.  I just have a lot to think about so if there is anyone out there who could give me feedback that would be wonderful.

Thanks!

Margo L.  Nebraska

Just a question for you, I am curious as to how you felt when your tumor was growing or had grown to 7 pounds?  I know I have a GCT tumor in me, as my CAT scan found one, but it was only 12mm.  That was 6 months ago.  I go back for another CAT scan and blood work on the 18th.  But, I swear I have gained more weigh in the last 2 months than I have in the last 2 years.  I feel bloated and full of fluid.  Is this possible?  I would really like to hear how your body felt or how it changed when you had such a huge tumor in you.

Thanks,

Margo L.

On Jul 04, 2012 2:10 AM StarryJones wrote:

Hi Margo,

Yup - been a nurse all my life!!  But WOW on the pericardial effusion!  Very strange!  And even more so that it went away with no special treatment!

Currently my last Inhibin B was 50.....this is post op from surgery in January at which time it was about 100.  I'm due again at the end of July so am most anxious to see which way it's going to go....hopefully continue to trend downward.

I did have an occurrence once when the Inhibin B bumped up - I figured due to extreme stress and eating belly fat creating foods.  After 6 weeks of a vegetarian diet along with no dairy - it returned back down to normal and stayed that way for 4 years.  

That's great that you are so active - I'm sure that really helps!  I wish we could all get together one day so that we could more easily sit down and discuss!  

How about everyone coming down here??  We live in the Caribbean, on the island of Antigua!!

Sending love to all my sisters!

Starry

Starry- it has been going on 4 months since I e-mailed you last and I have some questions to ask.  I am asking you since you have had a GTC near/on your colon.  How did you feel when you had this tumor?  Lately I am sooo tired and almost immediately after I eat my stomach either does not feel good or makes horrible noises.  Is this normal?  I go back to the dr. on Dec. 18th to see if my tumor has grown and what the next step is if it has.  Someone on a previous post said theirs grew really fast.  I am wondering if this is what is going on.  I have been getting weird pains in my abdominal area too.  I have not said anything to my friends or family because I do not want them to worry.  I can tell my "GTC sisters" how I am feeling and I am hoping for any response from any of you.

Thanks,

Margo L. in Nebraska

Starry- thanks for the response.  So you are a cardiac nurse?  I am a 4th grade teacher and a volleyball and basketball coach in a school in Nebraska.  Seeing your profession reminded me of something else that happened to me when I had my surgery.  Something went wacky in my heart.  After an ekg, ecg, and some other tests it came back that I had pericardial effusion.  What was crazy is that once my turmor was removed the fluid around my heart disappeared.  Did this happen to you or anyone else that you know of?

I am going to be more diligent in eating bananas, drinking orange juice and other foods to help out my potassium.  And yes, I have been sweating tons with this wicked weather.

I was told today that my inhibin b level was 68.

Margo

TB- I am glad you responded to my post.  You ask some great qts.  Every time they drew inhibin A and c125 for blood work.  My new dr. was very upset that inhibin b was never drawn so I do not have a baseline.  I know my current test is 68.  I do not know what that means...they said it is "elevated."  What is high?  Back in 2008 my c125 was 24 and Thursday it was 10.  So that is good, although you can't put much stock into the c125.

I did have washings after my surgery.  I thought that everything was clean and so were the biopsies that were done as well.  The tumor/left ovary came back as GCT.

Margo