Newly Diagnosed

hi, I will try tp keep this to the point. I was jsut recently diagnosed with not one but three types of cancer.. I am really freaking out here I had a complete systerectomy on the 9th of june and after they first said it was lieomyosarcoma the pathology report is now sayingendometrial stromal sarcoma undifferentiated sendometrioid sarcoma and rhabdomyosarcoma. the the last one is a childhood cancer and I am 38 years old. I do not know plan of treatment yet I go back again to cancer center on July 8th first oncologist wants more doctors in on decision. I have 3 children and a wonderful husband I am not ready to leave behind yet. fearful to go back to doctors everytime I do I get more bad news, Michelle

I was very sad to hear about your struggles with cancer. I also wanted to say that I can truly relate to your feelings. I am also very young ( I just turned 30 June 4th) I was originaly diagnosed with LMS (lieomyosarcoma)in 1999 at the age of 24 and recieved surgery to remove my left upper lobe of my lung which contained a large round mass that turned out to be LMS. I was then referd to an oncologist who told me I did not need to see her any longer just go for follow ups with my pulminologist who took xrays every couple of months to see if my cancer had returned. On my 5 year cancer free visit I was asked to get a CT scan. They found a 3x6cm mass behind my heart. It had been hiding there for who knows how long. Less than a month later it grew to 9x6cm. I began chemo to try and shrink it and it is now 12x7cm. I am currently undergoing different chemo and looking for a surgeon that will be able to remove the tumor from around my aorta, heart, and esophagus. I have a wonderful husband who takes excellent care of me but I am in need of a confidant who might understand how I am feeling. I hope this post finds you well.

Michelle, I was diagnosed in 11/04 with LMS. Also with hysterectomy. In May of '05 I had to have a steel rod placed in my upper left leg because the cancer had metastised to the bone, lungs & skull. Most recent scans showed a spot at T8 on the vertabrae but the oncologist doesn't see that one. I have had 12 rounds of radiation to my leg & head & I just started a chemo clinical trial last week for LMS so I don't have much to say about it yet. I'll have scans after 8 treatments. Phase II clinical trial CCI-779. Might check into it. Stay positive...I know it's hard but there's no other choice. I am also taking Advanced Ambrotose & Ambrotose AO. It is Aloe Vera based & won't interfere with Chemo or Radiation. Read up on Cold pressed Flax Seed Oil too. A German doctor found it to be a cure for cancer. Ramona

Hello Ramona: I came across your comment on google when I did a search for ambrotose and chemo. My little boy Josiah has a brainstem glioma (tumor). We just started it 08/21/05. How has ambrotose improved your condition? Has it helped with your blood and platelet counts? Please let me know all about your experience with ambrotose and AO. Thank you so much. Maria

I'll have more scans on 9/9/05 & know more then about how ambrotose is working. I hate to say that I'll probably quit taking it because of the cost. I've been off work since April & have had to go on SS disability & simply cannot afford it. I have enough to get me to my scans but that's all. So far blood counts have all been good. I haven't had to go on any other meds except for pain or sleep aid. If you know where I can get it cheaper, let me know.

Hi, I was scanning through the posts and noticed yours with the subject of Ambrotose. I have a recurrence of chondrosarcoma (low grade) and have not been offered any type of drug treatment only a very radical surgery that of course comes with no guarantees. Anyway, someone told me about the Ambrotose and I have been taking it for a month now and it along with much prayer has made a huge difference in my quality of life. I was having such severe pain that if I got 1 1/2 - 2 hrs. of sleep a night then I considered it a good night. I can now sleep all night on some nights and others I only get up once or twice, walk around a bit and then go right back to sleep. I have had many days now that I don't have to take any of my percocet. I thank the Lord for leading someone to tell me about this. You are right, it is expensive. I have been blessed by having family members, friends, and neighbors who have heard that I am taking these nutrients give of their hard-earned money to help me. I have a friend who wanted to try the Ambrotose but didn't want to pay that high of a cost. She found a glyconutrient product on Ebay called Glycomannan that she is trying and likes very much. It is about half the price of Ambrotose. I don't know if they would work the same or not but thought I would tell you about it. There is also a program called Manna Relief that gives the Ambrotose to those who can't afford it, but that program might just be for children, I'm not sure. It would be worth looking into. You can probably Google Manna Relief and find out something about it. Hope this helps. Take care, Ann

I saw your message concerning the friend taking a Ambrotose Alternative. It is called glycomannan and the company is Glycobiotics International Inc. They have a website at --- Message edited by CancerCompass staff: for personal protection, url removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- It is actually much more effective than Ambrotose in my opinion. It is much more concentrated, and almost half the price. It is not a multi-level marketing ploy like Mannatech either so their won't be anyone calling on you to sign up for anything. They have a lot of good info on their website and you can order it right from there. I am sorry to hear about what you are all going through I have a very close friend that is having a mastectomy on Friday. I am trying to find out as much as possible about the disease and if there is anything I can do for her besides pray. God Bless, Ged

Hi I just wanted to share with you my story I was was diagnosis with Lieomyosarcoma in December of 2001, for a few months Dr. told me that I  had fibroids that was the reason for all the heavy bleeding I was having for months and that I need to have a hysterectomy after my surgery I learn that I had uterine cancer, the tumor  has gotten bigger over the years now they say it's bigger than a grapefruit, this one Dr. I saw last week looking at my cat scans he said it was the size of a basket ball.  I have been on Chemotherpy for 5 years I didn't know people could have those treatments I've been on different kinds but they haven't shrunk it any, and some of the treatments gave me bad sided effect. I have 5 kids 3 still home and 2 grandbabies my children and God are my strength, I ask God to please me be here for my kids he has kept me this long.  Surgery is not a option for me because it is too close to organs that I need like my bladder and rectum, they would  have to cut at those areas.  I don't know what state you live I'm in Georgia but last year this new treatment called cyberknife was introduce and there is only now 4 in the United State. It's for people when surgery isn't a option,  My oncologist said I was be a good candidate for this but not for sure it will work but I have heard there has been alot of success story.  I pray that It will work for me to shrink this tumor. If you haven't heard of this yet look at this site http://www.Accuray.com, Good Luck

 

 I believe this is excellent and all the best.  Glad you are a candidate as I have heard great things about this form of treatment. Elaine

On 3/17/2007 Katzz wrote:

Hi I just wanted to share with you my story I was was diagnosis with Lieomyosarcoma in December of 2001, for a few months Dr. told me that I  had fibroids that was the reason for all the heavy bleeding I was having for months and that I need to have a hysterectomy after my surgery I learn that I had uterine cancer, the tumor  has gotten bigger over the years now they say it's bigger than a grapefruit, this one Dr. I saw last week looking at my cat scans he said it was the size of a basket ball.  I have been on Chemotherpy for 5 years I didn't know people could have those treatments I've been on different kinds but they haven't shrunk it any, and some of the treatments gave me bad sided effect. I have 5 kids 3 still home and 2 grandbabies my children and God are my strength, I ask God to please me be here for my kids he has kept me this long.  Surgery is not a option for me because it is too close to organs that I need like my bladder and rectum, they would  have to cut at those areas.  I don't know what state you live I'm in Georgia but last year this new treatment called cyberknife was introduce and there is only now 4 in the United State. It's for people when surgery isn't a option,  My oncologist said I was be a good candidate for this but not for sure it will work but I have heard there has been alot of success story.  I pray that It will work for me to shrink this tumor. If you haven't heard of this yet look at this site http://www.Accuray.com, Good Luck