Leimyosarcoma in my Liver

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Leimyosarcoma in my Liver

by Nannieg on Tue Jan 29, 2019 03:12 AM

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Hey everyone,

I was diagnosed in October with leimyoscarcoma in my transverse colon. I went in for a basic visit to request physical theraphy and my doctor sent me for a CAT scan. The scan revealed I had a tumor and it needed to be removed. Surgery was scheduled and tumor was resected and 12 lymphnodes were removed and tested. Tumor was a malignant leimyosarcoma and the lymphnodes were benign. Onacologist said no chemo was needed, but that I should have a PET scan just to be sure. 

PET scan pinged my liver. After the fun adventure of the liver biopsy the tumor in my liver is also leimyosarcoma.

I was referred to Moffitt in Tampa for a second opinion.The doctor did not offer much hope but recommended 2 types of chemo and posssibly surgery on my liver if the tumor shrinks enough with the chemo. 

I have researched the chemo the doctor recommended and the side effects are horrifying with very little light at the end of thr tunnel. I have to make a decission real soon which route I'm going to travel. Chemo or take my chances with holistic diet, great support group, and a whloe lot of Jesus!

My question to all of you is: Has anyone had a good experience with Chemo? It seems there are only a few research studies on this type of cancer. Quality of life means a great deal to me and I've lost 4 dear fariends in the last year and a half to cancer within a few months of diagnosis Three of them chose the chemo path with no quality of life. One chose to just live his life and lived three months.

I am open to discussion, suggestions, or testimonials! Only a few things in life have frightened me...Chemo frightens me to my core.

Nannieg

Thanks for all your shared experiences and I wish all the BEST to all of you!!

RE: Leimyosarcoma in my Liver

by Nannieg on Fri Feb 15, 2019 07:09 PM

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Hi, 

I am adding to the message I wrote on Jan. 28, 2019. I have leiomyosarcoma in my liver. The only treatment that I have been offered locally is chemo, Doxorubicin. Everything I have read seems to be horror stories of the side effects. 

I have been in communication with a sweet lady in England who shared that her doctor explained an infrared sauna helps with the side effects. Have any of you had any experience with a sauna.  I would appreciate any information or tips about Doxorubicin.

I am going to MD Anderson next week to seek another route of treatment or at least a 2nd opinion. I would love to hear from anyone that has been or is currently receiving treatment at MD Anderson. I am remaining positive and would love to hear thoughts from any of you. 

Wishing ALL the best to ALL of you!!

Nannieg

RE: Leimyosarcoma in my Liver

by Valeriepannone on Fri Feb 15, 2019 08:39 PM

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On Feb 15, 2019 7:09 PM Nannieg wrote:

Hi, 

I am adding to the message I wrote on Jan. 28, 2019. I have leiomyosarcoma in my liver. The only treatment that I have been offered locally is chemo, Doxorubicin. Everything I have read seems to be horror stories of the side effects. 

I have been in communication with a sweet lady in England who shared that her doctor explained an infrared sauna helps with the side effects. Have any of you had any experience with a sauna.  I would appreciate any information or tips about Doxorubicin.

I am going to MD Anderson next week to seek another route of treatment or at least a 2nd opinion. I would love to hear from anyone that has been or is currently receiving treatment at MD Anderson. I am remaining positive and would love to hear thoughts from any of you. 

Wishing ALL the best to ALL of you!!

Nannieg

Hope this can help you a little bit & i wish you the best!!!!!

I don't know if you were given a stage of it but here's a little information for you..

Val Staten Island N.Y.

Stage IV sarcomas are rarely curable. But some patients may be cured if the main tumor and all of the areas of cancer spread (metastases) can be removed by surgery.

Recurrence of leiomyosarcoma. This means that a soft tissue sarcoma has come back after it was first treated. It may come back in the tissues where it first started (local recurrence) or in another part of the body (metastasis).

Chemotherapy is also used for some leiomyosarcomas. It's mainly used to treat a leiomyosarcoma that has come back (recurred), or that has spread (advanced ormetastatic cancer). Chemotherapy may also sometimes be used after surgery to try to reduce the chances of it coming back.

Uterine leiomyosarcoma is an extremely rare form of cancer, estimated to occur in 6 out of every 1,000,000 women in the United States each year. The average age at diagnosis is 51. Uterine leiomyosarcomas account for 1-2 percent of all malignant tumors of the uterus. Leiomyosarcoma is a form of soft tissue sarcoma.

Most forms of leiomyosarcoma are aggressive tumors that may spread (metastasize) to other areas of the body such as the lungs or liver, potentially causing life-threatening complications. Leiomyosarcoma has a high risk of recurring after treatment, if not diagnosed early.

he symptoms of a leiomyosarcoma vary depending upon the exact location, size, and spread of the tumor. ... Most forms of leiomyosarcoma are aggressive tumors that may spread (metastasize) to other areas of the body such as the lungs or liver, potentially causing life-threatening complications.

RE: Leimyosarcoma in my Liver

by Nannieg on Sat Feb 16, 2019 12:06 AM

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Thank you Val for responding. I am trying to get as much information as I can to help me make good choices as far as treatments and maintaining some sort of decent quality of life.

Mine is Stage IV and has metastasized to my liver. It started in my transverse colon and was removed in Oct. 2018. My surgeon was sure he got it all. Unfortunately, it had spread to my liver and they did not know until we did a follow up PET scan in November. 

Thanks for sharing your information, every bit of information helps.

Thank you!   Nannieg

RE: Leimyosarcoma in my Liver

by Valeriepannone on Mon Feb 18, 2019 03:24 PM

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On Feb 16, 2019 12:06 AM Nannieg wrote:

Thank you Val for responding. I am trying to get as much information as I can to help me make good choices as far as treatments and maintaining some sort of decent quality of life.

Mine is Stage IV and has metastasized to my liver. It started in my transverse colon and was removed in Oct. 2018. My surgeon was sure he got it all. Unfortunately, it had spread to my liver and they did not know until we did a follow up PET scan in November. 

Thanks for sharing your information, every bit of information helps.

Thank you!   Nannieg

Please keep in touch... i am so sorry you have to go through this. :( 

See what docotr says collect your thoughts, just remember everyone reacts and heals differently. Treatments even perform differenlty for people too... 

      Val

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