Leiomyosrcoma

laneyc

artiste01 said:

Hi Bella,
I'm so glad, it
Hi Bella,

I'm so glad, it gives me hope. I too have leiomyosarcoma. I was diagnosed nov. 08, did chemo and radiation and the cancer is now back in my lungs. Will try chemo again.
Love, to hear from you since you are doing so well. Is Doxil a new chemo drug ?
Love to hear from you.

Advice please
Hi my brother was diagnosed with leiomyosarcoma a very large tumour 20cms in diameter, he had surgery in May 2009, removal of the tumour, bladder and small part of bowel followed by 6 weeks of intense radiotheraphy.We thought things seemed clear but A few weeks after the treatment finished he became very ill, blockage of bowel, he began vomiting and dramatic weight loss over 3 months it took that long to decided what was going on!. 3 weeks ago he underwent surgery again to repair the blockage and callopse of bowel. Sadly since then he has been going backwards and not recovering well, still problems with eating keeping food down. They have now said that his intestines do not appear to working, they think due to damage from radiotheraphy. They hope if he regains strength and can get him eating again its possible this may improve.. anyone got any advice we can give to help? we also have the added problem of while he was in having tests small cells have now appeared on his lungs. I get the impression surgery or chemo is not going to be an option for him now. I just want to try and make it easier by relieveing any pain we can due to the radioation after effects. any advice? regards Lorrain

jnlim

Bella29 said:

Leiomyosarcoma
cpritch227- I was diagnosed with Stage IV Leiomyosarcoma of the uterus. Prognosis at the time was a 20% chance to live another 3 weeks to 5 years. This May will be five years.
The first round of chemo was the gemzar/taxotere, as was the second. Right now I am on Doxil and the last scan was clean. So chemo does indeed help as well as the right surgeon.
When I first read everything I could get my hands on I also thought "Grim". It isn't. The quality of life may not be the same, but hope, love and faith will pull you through.

leiomyosarcoma
hey Bella, Did you have hormone therapy? I was diagnosed in Nov 08, had six rounds of chemo ( doxorubicin and infosamide). Is now on femara?

jnlim

mmzamm said:

leomayosarcoma on liver
hi, my name is mario and live in Australia.
My wife was diagnosed with Lms.in 2004 so far she has been treated with Dexo.and texo.Mary has alump on her liver 14cm.in diamiter Dexo. help reduce the size to 4cm but now it is back to 14cm.so far Mary has had 6 shots of texo.and will have a ct scan next week, hoping for a sign of improvnemt, so more treatment will be given. Well at least she has not expierienced no pain and doing much better than what the doctors predicted. when diagnosed Mary was given 3 months to live 5 years down the track she is still going strong.
I would like to ask .Does any one know of any other treatment beeing used

if so please tell me
Thanks for all your support
Keep praying it all helps
Cheers
Mario

I had uterine LMs, meta to
hey mmzamm, I had uterine LMs, meta to liver. had a radio frequency ablation done to burn off the tumour in the liver. Perhaps your wife would like to consider that?

jnlim

artiste01 said:

Hi Bella,
I'm so glad, it
Hi Bella,

I'm so glad, it gives me hope. I too have leiomyosarcoma. I was diagnosed nov. 08, did chemo and radiation and the cancer is now back in my lungs. Will try chemo again.
Love, to hear from you since you are doing so well. Is Doxil a new chemo drug ?
Love to hear from you.

hey artiste01, not sure if
hey artiste01, not sure if Doxil is doxorubicin. If it is then it had been around for a while. That's the chemo I was on for Uterine LMS.

moonsbeam

jnlim said:

hey artiste01, not sure if
hey artiste01, not sure if Doxil is doxorubicin. If it is then it had been around for a while. That's the chemo I was on for Uterine LMS.

Doxil
hi, I was reading about your Doxil treatment has it been effective? I was on Gem/tax for 5 months, then an experimental drug, now i'm back to the chemo. Hopefully this will have less side effects than taxotiere. I was diagnosed with LMS found in the uterous after a suprapubic hysterectomy during which the uterous is mulched up and vacumed out and we think cancerous tissue was sprayed into the pelvic cavity. As a result I had 11 sites of metastasis found with pet scan and removed during surgery. As of now there are two tumors growing but all other organs are clear. I am really hoping that Doxil is the drug that will put my cancer into remission. I have been fighting a lot of depression lately, went back to work part time but the uncertainty of my future makes me depressed even though I try to stay active etc. Any words of wisdom welcomed here.

arleen

BITMOYD

I was just diagnosed
I just found out three days ago that I have leiomyosarcoma in my uterus. I am still trying to deal with all of the unknowns. I have a 7yr old son and I have no idea what to tell him at this point since my OB isn't able to tell me anything about the cancer. I have two oncologists lined up, appts have been made, now I am just waiting for next week to get here so I can get more info.

vivalavida

BITMOYD said:

I was just diagnosed
I just found out three days ago that I have leiomyosarcoma in my uterus. I am still trying to deal with all of the unknowns. I have a 7yr old son and I have no idea what to tell him at this point since my OB isn't able to tell me anything about the cancer. I have two oncologists lined up, appts have been made, now I am just waiting for next week to get here so I can get more info.

i was just diagnosed
here in Canada we have a muted commercial on tv which illustrates the effect of a cancer diagnosis on family. A couple is seated in front of a doctor and we guess that he is announcing the diagnosis to the couple. The couple springs backwards in their seat as if solidly hit by a full-blown force. Then the couple in front of friends and family annouces the bad news and all the family falls backwards the same way. It is terrifyingly accurate even without words!

I have been diagnosed in May 2009 with Stage 1 LMS at age 36. I had a complete surgery with no traces left. I had adjuvant chemo even though studies doesn't show any conclusive advantage. The reason why i went on with it is simple. If I didn't do it, will I be satisfied that I did everything I could that I tried all options presented to me in order for that disgusting thing to go away and never come back? And what if it comes back? will I regret not taking chemo at the beginning? i didn't want to have to live with that burden.
I have a 5 year-old boy. I think that we worry too much about their resilience. I didn't want to tell him everything. I simply told him that mommy is sick but she will take medicine and try everything she can to get better. She may lose her hair but it will grow back. My only advice to you would be to dedramatize what cancer is.

Easier said then done you will tell me. You're right. But see this e-mail as a testimony of hope. After the diagnosis, I went from feeling incomprehension, bewilderment, sadness, anxiety, fury and finally a sign... You must think that I'm talking about a mystical sign... but no.. in fact I've tried for the first time in my life to look inside myself. I was a workholic(senior lawyer) and sometimes still am, trying like a bunch of you out there to be the perfect mom, perfect wife, perfect daughter...you get the picture! It sounds cliché but i never really stopped to see if my life had a meaning. I started reading excessively about LMS, then I tried to distance myself from the cancer itself by trying to understand life better and what I can do to enjoy it more. During my treatments last summer (I had 4 months of chemo)I read on buddhism, yoga, positive psychology and let me tell that it helped a lot. That was even more surprising to me since I never believed in the pop psycho mambo jumbo thing.

Looking behind, live your grief out, tire yourself by trying to understand LMS and why it touched you, surprise yourself by how tough you are and take all the love and the strength that your family and kids will give you...
good luck.. there is always hope..

linny 57

Hi i had leomyosarcoma 2
Hi i had leomyosarcoma 2 and a half YRS ago. had a few times when we thought it had returned, but thank god so fare so good.
every day i thank the good lord up above . a nother day to wake up & see the sun shine, the little things in life we take for granted .
i am a nurse but when it comes to my self it all goes out the window fuuny that.

salamasina

back pain
Hi, I am sorry to hear about your cancer. I too have sarcoma that has metasized from my uterurs to lungs and recently spine. I am wondering what to expect, ie. Pain??? Please share what to expect in the way of pain, treatments and their side effects. thank you, Adele Salamasina

Sandy C.

salamasina said:

back pain
Hi, I am sorry to hear about your cancer. I too have sarcoma that has metasized from my uterurs to lungs and recently spine. I am wondering what to expect, ie. Pain??? Please share what to expect in the way of pain, treatments and their side effects. thank you, Adele Salamasina

Answer for spine
I also have a tumor on my back. You may have pain depending on how big it is. Thing is that there is pain meds that will take care of the pain. As if that wasn't bad enough I had a wreck and broke the disk above it but didn't paralize me one more up it would of been a different story.

liverpool13

zhamilton said:

Hi sandajean
My 24 year old daughter in law was diagnosed last month with LMS, today found out it is stage 3. She will begin chemo next week for 8 months. What kind of alternative medicine did you and are you using. Have you ever had chemo? If so, what kind of chemo did you have? Did they remove your uterus when you were diagnosed? What stage were you in? Thanks, sorry about so many questions. The family is looking for help, encouragement and a miracle from God.

My daughter is 23
she was diagnosed in Feb of 2011 with Leiomyosarcoma. it was in her forehead. What we thought was a simple cyst was the Leiomyosarcoma.
She has had all the tests, now we are waiting for the results... waiting is killing me..
How is your daughter in law?- she is the first one I have read that is around the same as my daughter...