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Just found out I am clear cell - Questions?

NJZ62
Posts: 32
Joined: Sep 2012

Ladies,

I have been treated for recurrent metastic endometrial cancer since Aug 2012, but just found out last week that I have clear cell specifically.

This makes sense since I have done 2 chemos: 6 rounds Taxol-Carbo, 2 of Topetecan (discontinued when it a. crashed my blood, and b. wasn't slowing the cancer down enough), and after some initial response, the cancer progressing.

I am now on Doxil, just one treatment in, and waiting with hope and prayers to see if it can stabilize the cancer.

I have developed ascites again.  I had it last fall, but chemo kept it at bay until recently.  Scary how much weight I'm retaining, hard to walk and somewhat painful.

Who has experience with Doxil and how has it worked for you?  Would like to know who else has clear cell too...

As always, thanks!

Nancy

 

 

 

 

NorahS
Posts: 93
Joined: Dec 2012

There is a search feature on the main page of Uterine Cancer. If you type in "Doxil" you'll get threads that have Doxil as their topic.  Here is one such thread, which should open in a new window:  http://csn.cancer.org/node/187874

I am so sorry you feel so uncomfortable with the ascites - do they plan to drain it so that you feel more comfortable?

Please post again soon. 

  

 

 

NJZ62
Posts: 32
Joined: Sep 2012

Thank you Norah, for the helpful Doxil thread - it gave me some good information, and it sounds like Doxil can perhaps help more than I thought.

The ascites is my worst problem right now - I feel like an overripe watermelon!  My poor husband has to help with socks & shoes because reaching my feet is almost impossible.

Dr. doesn't plan to drain this time - I was very disappointed, paracentisis worked like a charm last fall and was a piece of cake to undergo.  But this time he felt the excess water was not in one "lake", easy to tap, but a bunch of little pockets - so tapping not as easy or effecive.  He wants to give the Doxil a chance to make a dent in the cancer.  However, he did put me on Lasix and I am going to try lymphatic massage at a palliative care center that he recommended.

Thank you for your post.

Nancy

 

NorahS
Posts: 93
Joined: Dec 2012

...however your doctor does appear to have sound reasoning. It is also good that he put you on Lasix and recommended a lymphatic massage.

Hope that these two measures work to keep you as comfortable as possible, but if they don't, don't hesitate to go back and be re-evaluated.

 

 

 

j1o2y3
Posts: 5
Joined: Apr 2010

Hi Nancy! My name is Laura I usually lurk here every day since you asked about clear cell I figured I would give you a reply. I am almost 3 years Ned. I have stage 3c clear cell. I have not had any recurrance as of today and hopefully ever. What stage did your dr give you? I had toxol/carbo. I don't know anything about doxil. I hope it works for you. If you have any questions please ask .

Laura

NJZ62
Posts: 32
Joined: Sep 2012

Thanks for taking your time to reply, Laura, I appreciate it, and I LOVE hearing when anybody is "3 (etc.) years NED".

I think my dr was very disappointed that Taxol-Carbo & Topetecan didn't work more effectively for me, since they are considered "stronger" or more likely to bring a response.

I am Stage 4 - metastic to liver, omentum, & I'm not sure exactly where else, since I have stents keeping my ureters open (scarred when I had radiation), and now cancer is trying to squeeze the stents shut.  I was Stage1 Grade 3 when cancer was first discovered, but, like I say, didn't know until now that it was clear cell, not "garden variety" EA.

I've said it before, but this site has been a God-send for me - I am grateful to be able to connect with women going through some of the same issues.

Nancy 

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

So sorry you are having problems controlling the monster. I hope Doxil does the trick For you.  

I haws told that ca125 may rise before it eventually drops. Best wishes & lots of big hugs.

mary Ann

NJZ62
Posts: 32
Joined: Sep 2012

Thanks Mary Ann - I would be lying if I didn't say I'm pretty scared about my conidtion, but doing my best to hold a good thought & be hopeful.

ameyc2
Posts: 4
Joined: Mar 2013

I'm new at the site but wanted to share, my name is Christine and I'm now 58. I am cancer free for five years now after a diagnosis of clear cell uterine cancer. I was also on the taxol/carbo combo with internal and external high dose radiation. My thoughts and prayers are with you. There are survivors out there so you hang in there and fight the fight. please let me know if you have any questions or I can help in any way.

 

 

 

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