Leiomyosarcoma

I am 45 and recently diagnosed with cancer. I had a hysterectomy but one ovary was left so I could avoid dealing with instant menopause. The doctors have told me that they think all of the tumour was removed. They are not happy with the margins around the area but more surgery is not an option. At this time there are no treatment options, radiation was discussed but would really offfer no benefits and the side effects would do more harm than good. The chances of the cancer coming back is about 70 to 80 percent and this usually occurs within the first 2 years from the date of diagnosis. I would like to hear from anyone with a similar type of cancer. I am still quite confused and feel I was not given enough information.

Hi,

I don't understand why you say there aren't any treatment options now.  I was diagnosed last Aug. with Stage IV LMS and have been on a chemotherapy regimen of gemzar and taxotere.  I know of another woman on the east coast who was diagnosed with LMS when she had a hysterectomy and they discovered the tumor in her uterus.  They feel that they got it all; it hadn't metasticized, but she's also been on the same regimen of gemzar and taxotere.  It would seem that your doctors would put you on chemotherapy as well. Her PET scan showed her to be cancer free.  I've read that if LMS is found early like hers, and apparently yours, you have an 80% survival rate. My statistics are a lot more grim, but I'm also taking complementary medicines, and I've been doing really well according to my CT scans.  I'm having a PET scan tomorrow.  Please let me know if I can provide more information.  Good luck to you!

Karen

Hi,

My mom has uterine cancer. She had a hysterectomy and the tumor returned 4 years later. She was given radiation and it worked wonderfully for her. It responded very quickly. Then she was put on Megase which is actually progesterone since her tumor was hormone receptive. It brought her into remission for almost 2 years.Her markers went down to almost nothing. They say it stops working eventually which is where we are now. The only side effect she had was difficulty walking. She also has parkinsons and is elderly so it may have interfered with that medication.

So now she has been given the options of tamoxifen and chemo. She just started tamoxifen. I know the side effect of that is uterine cancer...but she will try whatever she is offered. I hope this helps you..please ask your doctor about Megase...it was great for my mom. Good luck.

 

On 3/26/2007 Kbookcat8 wrote:

Hi,

I don't understand why you say there aren't any treatment options now.  I was diagnosed last Aug. with Stage IV LMS and have been on a chemotherapy regimen of gemzar and taxotere.  I know of another woman on the east coast who was diagnosed with LMS when she had a hysterectomy and they discovered the tumor in her uterus.  They feel that they got it all; it hadn't metasticized, but she's also been on the same regimen of gemzar and taxotere.  It would seem that your doctors would put you on chemotherapy as well. Her PET scan showed her to be cancer free.  I've read that if LMS is found early like hers, and apparently yours, you have an 80% survival rate. My statistics are a lot more grim, but I'm also taking complementary medicines, and I've been doing really well according to my CT scans.  I'm having a PET scan tomorrow.  Please let me know if I can provide more information.  Good luck to you!

Karen

wow  helpful & promising to hear somewhat.I just heard my Mom has Uterine cancer,& i'm scared senseless ,i'm a recovering alchy of 6 + yrs and i'm at my wit's end.

 

On 4/10/2007 Huffy23 wrote:

Hi,

My mom has uterine cancer. She had a hysterectomy and the tumor returned 4 years later. She was given radiation and it worked wonderfully for her. It responded very quickly. Then she was put on Megase which is actually progesterone since her tumor was hormone receptive. It brought her into remission for almost 2 years.Her markers went down to almost nothing. They say it stops working eventually which is where we are now. The only side effect she had was difficulty walking. She also has parkinsons and is elderly so it may have interfered with that medication.

So now she has been given the options of tamoxifen and chemo. She just started tamoxifen. I know the side effect of that is uterine cancer...but she will try whatever she is offered. I hope this helps you..please ask your doctor about Megase...it was great for my mom. Good luck.

i'm goin to test w/ my Mom's oncologist today, & i'm finding more suggestions for treatments as i go ,thnx for all of everyone's input.She has been diagnosed w/ Multi Malignant Mullerian Tumor and just now goin to her oncologist after being a 8+ yr breast cancer survivor taking Tamoxifen 5 yrs.& then "Evista"(estrogen) for several more.they say too long of exposure to estrogens causes this,as i read on line anyhow.

Hi,

I got the results of my PET scan, and the cancer is gone from my lung and liver!  With just 4 months of chemo, plus my complementary meds, I've succeeded in getting rid of the cancer in my breast, abdomen, lung, liver and small intestine!  All that's left is a little in my uterus (the original site, and my spine.)  I've been taking Paw Paw cell-reg and Maitake Gold compound, but I've recently added two more things that have been proven to be almost miraculous.  One is Coriolus Mushroom(this must be purchased as a heat extracted liquid to work), which has proven to succeed with sarcoma; and the other is Liquid Zeolite which gets rid of the heavy metals in your body, gets your immune system back to normal, and also gets your ph level to a better level that is toxic to the cancer. This med goes back to the Ming Dynasty in China!  All the info can be found on line!  Liquid zeolite has been shown over and over to get rid of cancer in people in a month's time or less! I was originally told by my oncologist that the longest anyone has survived with my LMS, stage IV, was 3 years.  I told her to forget that...I'm going to be around for 30 years! (I'm 53 now). I've already exceeded all her expectations I think, and I attribute it to the complementary drugs. I was on a chemo regimen of gemzar and taxotere and have taken a 2 month break to get strength and energy back, which I have done. Now, tho, I think I'm going to give the new meds a month and have another scan before I even consider going back on chemo!  Good luck to you.  There's a lot out there, but the FDA doesn't want us to know about it!!  Karen

Hi..forgive my ignorance, but what is Leiomyosarcoma? Is it a type of uterine cancer?  I was diagnosed with that last June.  I am restarting chemo next week.  Can I take those drugs if I appear to be cancer free? Can I take them when I am taking chemo or only afterward?  It is so hard to know what to do as the doctors know very little if anything about anything that is not FDA approved.