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Leiomyosarcoma

Melodyyy
Posts: 5
Joined: Mar 2006

I'm one in a million. That's the incidence of my sarcoma. Needless to say, I don't have anyone to share my cancer experience. There are 650 of us in the USA this year. How to make contact? At least people in this chat know what its like to have a rare cancer! Hello!

TereB
Posts: 288
Joined: Apr 2003

Hi Melody, I think I know the feeling of being one in a million. I also have a rare cancer, I think I'm a 2%. I tried posting here to find other rare ones like me but I had to wait a long time. Later Google pick it up so do NOT post your personal email.

Sooner or later you will find another one in a million, you just have to wait a little bit.

Are you through with treatment? I hope so and I hope all is well with you.

All the best and God Bless,
TereB

Melodyyy
Posts: 5
Joined: Mar 2006

Dear TereB,

I am still in treatment. I am three weeks into my radiation and I have 4 weeks to go. Hopefully, someone will post who has LMS one of these days. Thank you for your advise about the email address. I am really tired but otherwise doing well. How is your treatment going?

Take Care, Melody

TereB
Posts: 288
Joined: Apr 2003

I'm not in treatment at the moment. Last rad was July 05 and at the moment no pain which is good and my tumors seem to be dormant which is also good. Just coming out of depression so all seems better now. There is no cure for my tumors, just radiation as palliative care when they hurt.

You are in my prayers from now on and I hope with all my heart that all goes well. You never know when someone with LMS will see your bulletin, so do not despair if you have to wait a little bit. Have you asked your doctor if they know of any support groups? Other patients with the same?

I am glad you are doing well even if you are a bit tired, that is normal and it will go away after you finish with your rad. Have you tried the survivors chat room? There may be someone with LMS. If not, they are good with support.

All the best,
TereB

Melodyyy
Posts: 5
Joined: Mar 2006

I'm glad that the depression is lifting for you. I have bipolar disorder (manic depressive) so I have a front-row perspective on depression. Are you taking any antidepressants or mood stabilizers? I'm glad that your tumors are dormant. May they stay that way for ten thousand years. I have been to one support group and the members were all 30 years older than me. Their stage of life contrasted too sharply with mine. I have applied to the Wellness Community for an online support group. For some reason, I cannot assess Chat on this website. I am trying to make sense of what has happened to me and what the future holds. I finish radiation in 4 weeks and then I don't see my oncologist for another 5 weeks. I don't know what comes next. More scans? Remission? Wouldn't that be nice! Many people seem to have forgotten that I am still dealing with emotions connected to cancer. They have crossed me off their worry list, and I am starting to feel more alone. Even my husband, who was great when I was first diagnosed, is starting to make demands on me that I'm not ready for. He just doesn't get how tired I am. I'm being a trooper and not complaining and running the kids all over and keeping house. Maybe I should just lie in bed ;)Now my daughter wants me to take her to the aquarium Sunday for her birthday and I don't know if I will have enough energy for this. I'm going to bed now. I get to sleep in tomorrow and I'm going to stay in my PJs all day!

Have a nice weekend, Melody

TereB
Posts: 288
Joined: Apr 2003

Hey Melody,
Sorry about the bipolar disorder. I take Prozac on and off. I was off it for a while and maybe that is why the depression got worse. Now I only have one way to go and that is up.
I can understand, sometimes people in support groups are so much older or younger and it just doesn't feel right. If you can come to the bulletins I see no reason why you can't go to the chat rooms, there are two. Have you tried it on the page before the bulletins? Just click on the chat room that has some people in it. Sometimes people in the chat room are the young ones, I call them 9teens, and they agree on special times to meet. People at the chat room are all survivors and caregivers, all ages, men and women and all get along. It is a good place to vent if you have the need, they all understand. Sometimes we cry together, other times we laught and they are great at giving support because everybody has gone thru similar things.
You may have another scan to see how radiation worked, and I hope they tell you are in remission for ever.
The emotions having to do with cancer last a long time and they are very normal but people who have not gone thru something like that do not understand it, just like years later you go for your followup which happens to be good and you are happy but nobody else seems to be excited about it.

Radiation makes you tired anda it is important that you rest, take naps. After you finished rad, the tiredness will go away little by little but it takes about 2-3 months. Does your husband go with you to radiation treatment? Maybe the doc could explain to him about tiredness.
You need time to rest and to relax, especially while you are in treatment. Do you have friends or family near who can help with the kids and other things?

Yes, stay in PJs all day, take time off, time for yourself!!

Where do you live? How old are your kids?

I hope you were able to relax and rest this weekend.

Hugs and prayers,
TereB

Melodyyy
Posts: 5
Joined: Mar 2006

The bipolar is managable. Try taking the Prozac continuously. It serves as a stabilizer when the winds blow. I finally got into chat. I had to turn off my firewall. Yes, I need to talk with someone about how my family has taken me off its "worry list". I'm still freaked out, but I'm glad everyone else is doing better! Husband has gone to radiation appointments. Frustrating. I live in California and I have two kids. My girl is 13 and my boy is 11. I'm 44 and my husband is 51. We ended up going to the aquarium this weekend, and I got a wheelchair because I got too tired. It worked out though. My girl said it was the perfect birthday. :) Where do you live?

TereB
Posts: 288
Joined: Apr 2003

Hi Melody,
A friend, DBilak, gave me a website for leiomysarcoma which looks pretty good and with all kinds of information. You may want to check it out:
http://www.leiomyosarcoma.info/

I'm glad you were able to go in the chat room and I hope you met some of the nice people there. Being taken off the "worry list" has happened to others and maybe you'll find someone in the chat room, I can't remember any names now.
I prefer to go to radiation treatment by myself, it is easier for me. I am in Houston, two kids too, girl 24 & boy 21. I've been battling this since 1987 so husband and kids understand how I feel, but it has taken years for them to accept it. Using the wheelchair at the aquarium was a good idea and Im glad it worked out. Im also glad your daughter said it was the perfect birthday.
All the best,
TereB

Melodyyy
Posts: 5
Joined: Mar 2006

Dear TereB,

Let's take this conversation somewhere private. My email address is Melodyyamaguchi@comcast.net. If someone else can pick up my email address from a link here, maybe I can help them deal with their cancer. I'm sure noone would abuse it. Thanks for the website. I'll check it out tomorrow. You've gotten your kids past the teenage years- good for you! I'm just peeking at it, and it doesn't look fun. But, hey- just as long as I'm here to see it, huh? I'm sorry you have had to deal with cancer for so long. I'm just realizing that this isn't going to go away. I'm a little slow on the uptake! Officially half-way through radiation. My prescription changes tomorrow, whatever that means. Did you get daffidals this year? My radiation oncology bought them from the American Cancer Society. It was a real day brightener. Also, I did an evening called "Look Good, Feel Better" through the ACS, and I got a makeover and a box full of makekup to go with it. Thank God for concealer and blush. I look so washed out these days. I look downright scary in the morning. Today the sun is shining and I feel better. That rain was really getting me down, says the California whiner! Must go and tend to children. Take care. Drop me an email!

Love, Melody

mecca1961
Posts: 2
Joined: Dec 2006

Just wanted to say hi. I have read that you would like to connect with someone who has had leiomosarcoma. Hope you are doing well. Please email me if you would like to hear from me. I have been cancer free for over a year now. I take it a day at a time and definitely appreciate each day and every moment.

lupe
Posts: 6
Joined: Mar 2009

hi my name is lupe and i have cancer stage 4 the name is leiomysarcoma i got my first chemo on 3-5 09 then ill go agin 3-12-09 then one week ill be off i realy dont know much of this sicknes but i would like to know how your doing and how your feeling,sent me a mesage please.lupe in calif.

momoftrips
Posts: 7
Joined: Sep 2012

My sister just underwent surgery to remove a large mass which seemed to originated on the right ovary. She had surgery Sept. 6th and is healing slowly but surely it was a major surgery.

Today she was told she has LMS but the thing is they left in her uterus and left ovary are there different type of LMS.

We go Friday to get her treatment plan and more details. She is only 30yrs not married and not children but has a VERY loving boyfriend that is standing my her side through all this.

I know we need more details yet but she is really scared. She has an awesome support system family and friends.

Thanks in advance for prayers and or any input you might have.

mkh74
Posts: 2
Joined: Oct 2012

There are different types of primary tumors in LMS. It affects the smooth muscle tissue, so your sister's primary tumor could have been on the overy that was removed. For my mom, it was her uterus. Unfortunately for us, she was diagnosed at stage IV, and the cancer had already metastisized to her lungs. By the time she died, almost two years after her diagnosis, the cancer had spread to various organs in her abdomen.

Stay positive, and remember that your sister and your family are your best patient advocates.

DJK
Posts: 4
Joined: Jul 2010

I was diagnosed with LMS of the kidney in July 2010. Had kidney removed and they say they got it all no treatment for that. In Sept I went for a chest CT and they found about 20 spots between my 2 lungs, as of right now I don't have to do anything because the spots are too small to biopsy. I go back in April for another CT Boy the waiting is starting to get on my nerves. This is my second bout with cancer I had hodgkins lymphoma when I was 19. Now at 55 it's not as easy to go through it again. I hope you are doing well and you are in my prayers Darla

Bella1966
Posts: 1
Joined: Sep 2013

Hi.

My name is Nikki and I too was dx with Hodgkins when I was 19. 

On May 15, 2013 had surgery for an enlarged retroperitoneal lymphnode. 

The result was a leiomyosarcoma from the radiation treatments I received at 19.  I tried two cycles of Gemzar/Taxotere but after follow up scans showed mets to liver and original site of lymphnode the treatment changed.

I am now starting a regimen of Adromycin which you as well might have had at 19. 

The treatments are kicking my butt, but I get back up again. 

Good luck with your treatment.

All my best.

Nikki

 

debcookie
Posts: 2
Joined: Apr 2006

My fiancee was just diagnosed 2 months ago, with a 15 inch mass in his abdomen, high grade leiomyosarcoma with inferior vena cava compression, he has 70 pounds of ascites on him, one spot in his lung and one in his liver, he has had 2 rounds of Doxil and I have no idea of what is next!!!!!!!!!!!!! Every day is a new adventure.

debcookie
Posts: 2
Joined: Apr 2006

he died april 12

theatricaleyes
Posts: 3
Joined: Jul 2006

Hi Melody! I am right there with you. I also have leiomyosarcoma. I was diagnosed six months ago and have been in treatment ever since (chemo). Unfortunately I do not know how many treatments I will have to endure because I have either tumors throughout my body.

How are you doing?

I just want you to know that you are not alone!

stepper55
Posts: 1
Joined: Dec 2006

Melodyyy,
You can share your cancer experience with me. I am 51 an had a hysterectomy in Oct 06. They found LMS in a fibroid tumor. They told me I probably didn't need to worry because they removed the fibroid and the sarcoma was encapsulated in it. But I had a Pet Scan to make sure and they found a spot on my lung that was LMS. I just got back from MD Anderson. I start chemo this week. Gemzar & Taxotere (have you heard of those drugs?) I was taken by suprise by all of this. Aside from heavy menstrual bleeding I was healthy, ate well, and spent 4 days a week at the gym. I knew I had fibroid tumors and needed a hysterectomy but I thought that would fix everything. Now my whole life has changed. I have bought a wig and turbans and am trying to prepare myself for what is ahead but it's still very scary. How are you doing?

mecca1961
Posts: 2
Joined: Dec 2006

I would love to chat with you sometime. I am 45 and was diagnosed with LMS in my unterine muscle this July 2006 and it was after my hysterectomy. It was stage I and the margins were good so they think I am doing well. I am simply looking for someone to chat with that has had the same type of cancer.

branG
Posts: 5
Joined: Nov 2007

HI IM FROM LOUISIANA MY MOM IS 50 AND WAS DIAGNOSED WITH UTERINE LEIOMYOSARCOMA 2 WEEKS AGO
AFTER HER HYSTERECTOMY ITS ALSO SPREAD TO HER LUNGS WE ARE NOT SURE WHAT STAGE OR IF IT SPREAD WE TOOK A PET SCAN YESTERDAY AND WAITING FOR THE RESULTS. HER DR IS REFERING HER TO MD ANDERSON IN HOUSTON TO SEE OUR OPTIONS OR WE WILL START CHEMO. SHES VERY DEPRESSED AND FEELS ALONE AND I
JUST WANT HER TO TALK TO OTHER PEOPLE WITH THIS RARE DISCEASE SHE WAS FINE A COUPLE OF MONTHS AGO
AND STARTED HAVING PELVIC CRAMPING AND HEAVY BLEEDING AND WENT IN AND HAD A PELVIC MASS TAKEN OUT WHICH LED TO HER GETTING A FULL HYSTERECTOMY AND A 6 PINT BLOOD TRANSFUSION SO SHES HEALING RITE NOW . JUST WAITING ON RESULTS

JoeDH
Posts: 2
Joined: May 2007

My wife had a uterine fibroid removed 2 yrs ago. It too had encapsulated lieomyosarcoma. She had 24 rad treatments at that time. Now, 2 yrs later, it has spread into her spine, lungs and sternum. Probably elsewhere too. She was apparently fine 3 weeks ago. Then her back and chest started to cause her pain. Then she could not walk properly. The cancer had destroyed two vertrabre and compressed the spine. They removed the two vertrabre and repaired her spine with titanium rods and cement. She was sent home 2 weeks ago with painkillers and told that maybe 6 months to like. I am lost.
Joe Hendrix

tanyah
Posts: 1
Joined: Jul 2007

my cousin has been fighting this type of cancer for almost a year now... she has tried several types of chemo with little or no response... i have read some web sites were past survivors had used herbal or homeo therapy... has anyone here ever had any sucess with alternative treatments or can recommend anything... i would appreciate the advice... she does not get online to read too much about her cancer. im sure most of the information is too grim for her to deal with right now... i hope someone can help... thank you... and best wishes to you all...

Bella29
Posts: 5
Joined: May 2007

Sloane Kettering is using a protocol of Gemzar(Gemcitabine), and Taxotere. She may also be eligible for a drug called Gleevic(sp?). I was not, but think it had to do with some genetic marker-forget why. My local oncologist used this protocol. I was first diagnosed 5/05 and have been cancer free since the end of the chemo regimen. He removed all the cancer first, and the fluid surrounding it. Went on chemo for six sessions, did an exploratory, found small area on bowel still infected. Finished the 8(total) session chemo regimen, and I have been great since then. Please, if you are not close to Sloane Kettering, find a good oncologist in your area that specializes in the area that tumor appeared. Mine was Uterine and all surrounding areas.So I have a GYN/Oncologist. I highly reccommend him. They did a total hysterectomy for me, removed the omentum and some other things. If you would like to tell me where your cousin lives/is, I can ask him to refer somewhere there. There is also a procedure not available in NY called intraperitoneal hypthermic perfusion. They pour the heated chemo into the abominal area. Risky,but worked wonders for my cousin who had adenocarcinoma. I know it is done in Pa. OH. and her Dr. moved to CA. so maybe there too. But I need to know site of origin and Stage to tell him. I had a zero to 20% chance of living 5 years. They said I might only have 3 months because my original gyn missed the entire thing. Don't give up hope. There are great Doctors out there.

TIFFYSMOM
Posts: 1
Joined: Oct 2007

Hello my name is Vickie.I am actually writing for my best friend who was diagnosed in May with Leiomyosarcoma.She has so far gone through her first round with chemo and ended up allergic to it She had first degree burns on both hands and an awful rash all over her body.They did not give her the last round.she then went right into her radiation of 6.5 weeks everyday,now starting with the high dosage then into another round of chemo. she has expressed to me many times wishing she had someone to talk to who has this disease.I have been up nights on this computer searching endlessly trying to find info and support groups with no success.Until this morning.If there is someone out there who would like to speak with my friend Debbie please notify me ( alsgirl4always@yahoo.com ) I would love to be able to do this for her.It might comfort her some to be able to speak to someone else.She is 48 yr old .Married to a wonderful husband and has grandchildren.That keeps her motivated.She has a positive out look but I think that is diminishing slowly.She is very scarred about her next round of Chemo.She has expressed to me that when she is in radiation and fluids she hears others getting hope from the nurses there But she gets none.Just from her friends.Could someone please help me try to help her a little bit.Thank you so much.

branG
Posts: 5
Joined: Nov 2007

my mom was just diagnosed with uterine leiomyosarcoma after a hysterectomy 4 weeks ago and we found out it spread to her lungs pelvic region and bones she has had 8 pints of blood total transfused to her in this time also shes in the hospital in so much pain she got a port put in yesterday and started radiation and chemo yesterday shes suffering on her left abdoman side and her legs i cant wait to see her better the drs. say she doesnt have very long but i beleive in miricales and im gonn fight this with and for her shes a 50 year old mother and grandmother and my best friend she was healthy 3 months ago never sick and now she cant walk with her pain please respond soon brandi my webpage is under brang

branG
Posts: 5
Joined: Nov 2007

my mom was just diagnosed with uterine leiomyosarcoma after a hysterectomy 4 weeks ago and we found out it spread to her lungs pelvic region and bones she has had 8 pints of blood total transfused to her in this time also shes in the hospital in so much pain she got a port put in yesterday and started radiation and chemo yesterday shes suffering on her left abdoman side and her legs i cant wait to see her better the drs. say she doesnt have very long but i beleive in miricales and im gonn fight this with and for her shes a 50 year old mother and grandmother and my best friend she was healthy 3 months ago never sick and now she cant walk with her pain please respond soon brandi my webpage is under brang

Bella29
Posts: 5
Joined: May 2007

Has she tried the Gemcitibine(Gemzar), taxotere?
I wrote a long reply to you yesterday and it wasn't posted. They don't know why, so it this posts I will write more in detail. I was first diagnosed with Stage IV

TreeHugger's picture
TreeHugger
Posts: 9
Joined: Oct 2007

I had uterine LMS which spread to my left lung...both removed surgically. I was told chemo does not usually help, so I had none. One year later "something" showed up in my right lung....Too small to determine exactly what it was according to my Dr's.....I had acupuncture, homeopathy and Chinese medicine. Now the lesion is shrinking. Was it cancer or just something benign? Who knows? Tell your cousin to try it, but be careful. There are a lot of quacks in the alternative med. feild. Ask to see credentials and check the Dr. out on-line.

branG
Posts: 5
Joined: Nov 2007

im from louisiana my mom was just diagnosed with
uterine leiomyosarcoma 2 weeks ago after a full
hysterectamy it has spread to her lungs we are not sure of anything else we had a pet scan done yesterday just waiting on the results.we were also referred to md anderson in houston so we are seeing her options ... branG

Bella29
Posts: 5
Joined: May 2007

Dear Joe, I am so sorry for you. The hardest thing for me was the agony it caused my family. Don't stop trying, try another Dr. I am not sure about the bone, but there are some procedures done only in three states that might appy to you and your wife. For more detail see the message reply to Tanyh (?). I cannot see it as backpage expired and I am forgetful to say the least. I hope the Doctors are wrong. I was Stage IV found at an emergency visit to hospital for pain. They said maybe only three months to 5 years if I responded to the chemo. I did. This happened in May 05. If my other message doesn't show up for some reason, I will go into more detail. I will say a prayer for your wife, it works.

sur5er
Posts: 4
Joined: Oct 2006

I'm not one in a million - yet. Mine is only about one in 10,000 to 15,000 from what I've seen on international websites. I have appendiceal adenocarcinoma (cancer of the appendix). They don't even keep figures of how many people there are in the US with this, since it is currently so rare and it gets treated aa colon cancer, so they numbers are hidden in with all the other colon and rectal survivers.

I was diagnosed as stage IV after my surgery and given between 6 and 18 months survival by 3 oncologists. That was 3 years ago this month.

I am still undergoing chemo (5-FU, Leucovorin and Oxiliplatin). They keep finding new nodes, which they say are metastatic, but they have never biopsied any of them to verify this. I have a renal cyst, numerous nodes in both lungs and "some involvement" in the bladder. The good news is that with the exception ofseveral new nodes in the lungs found earlier this month, everything else is either stable or has actually reduced in size during the last 12 to 15 months.

It's always nice to meet another "rare" person.

Tammyfiance
Posts: 1
Joined: Apr 2007

My fiance has a very rare cancer. His oncologist had never seen it before. So we were referred to Dr. Einhorn at Indiana State, since his primary tumor was in his testical. My fiance has stage IV adenocarcinoma of the rete testis. Dr. Einhorn has only heard of it a couple times before about 6 years ago. So far no chemo has really made any difference but he's looking to start Doxil next. I would just so love to talk to anyone who know anything about this cancer. I've left other messages on other sites and have never gotten anything back, but I thought I'd try here. Here's hoping...
Tammy

JoeDH
Posts: 2
Joined: May 2007

Hi Tammy. My name is Joe. My wife has lieomyosarcoma. It started as a uterine fibroid 2 yrs ago. She had rad treatment but was told chemo is ineffictive against lieomyosarcoma. Now, 2 yrs later, it has spread to her back, lungs and sternum. I know more than I wish I did about this. Reply if I can help in any way. Joe

wolfee59
Posts: 1
Joined: Oct 2007

my mom was diagnosed in june 07 with appendix cancer [Pseudomyxoma Peritonei] at barnes jewish hospital in st louis. it was stage 4 and because she was not a candidate for debulking procedure they sent us home to work with our local oncologist who knows nothing about this type of cancer. we are very frustrated that we cannot gather any data or talk to anyone with similiar cancer, so if you have any suggestions on where you gathered info and answers we would be forever grateful. i have contaced all the cancer organizations and they simply reply, sorry thats a rare one and we have no info. thanks, and i hope to hear back from you soon, Greg

Catrinka's picture
Catrinka
Posts: 4
Joined: Oct 2007

Melody, Try going to http://listserv.acor.org/archives/l-m-sarcoma.html, this is a group board with a lot of LMS survivors. You can get support and information. It was a little difficult at first for me to get signed up, just keep trying if it doesn't work the first time. Another one you can try is LMSarcoma@yahoogroups.com. I was diagnosed with ULMS 9/07 and just finishing up my chemo. Good Luck and be well. Catrinka

lupe
Posts: 6
Joined: Mar 2009

helo my name is lupe and i have long cancer the name of it is leiomysarcoma i would like to meet persons with the same sicknes i went to chemo on 3-5-09 im doing ok for the first day i have to go agin 3-12-09 then one week off so how are you doing i hope your doing fine.thank you.lupe

nantee
Posts: 2
Joined: Apr 2009

I had chemo and it wasn't that bad. they gave lots of medicine to not throw up. i was really tired, the more i went. at the end of chemo i could hardly get up for a couple of days. good luck
My radiation was the worst.

mfrank1032
Posts: 1
Joined: Apr 2009

i just read your post and i too have just undergone a total hysterectomy for fibroid which turned out to have lMS in the uterus. My gyn. sounds very optimistic about having removed everything, however, i am sceptical at this point. I was just wondering how you have been getting along with your post diagnosis of LMS? i look forward to hearing from you or anyone else who may have the same type. I am only 38 years old!

donna1960
Posts: 2
Joined: Aug 2009

I too had a total hysterectomy 1/6/09 for a fibroid that turned out to be LMS. My uterous was removed back in 1997 because of a fibroid which they now believe was misdiagnosed and this is a reoccurance. Mine was low-grade so my treatment is to be monitored with chest x-ray, blood work and CT. It is nice to talk to someone who's been through this. My family thinks I worry about this to much. I'm 48. Good Luck!

dwinmtp
Posts: 2
Joined: Nov 2009

Don't know if you two are still on the message board, but I'm also interested in seeing how women with uterine leiomyosarcoma are doing. I went in for myoectomy in July 2009 to get my "fibroids" removed. Pretty much shocked everyone when they discovered it was ULMS, as I was only 41 (42 now) and had been perfectly healthy and pretty darn fit up until the 9 months before the surgery (when the crazy bleeding and pain kicked in - don't even get me started on how much my gynecologist completely blew off my symptoms).

Went to Johns Hopkins where I found a wonderful doc - had a hysterectomy in September. I did not undergo any adjuvant therapy, as the docs at Johns Hopkins didn't see any spread, and said there's no evidence that chemo and/or radiation have any effect on recurrence/survival at that early stage. I'm afraid the stories I'm hearing here aren't making me feel very confident. I go for my three-month scan in December, and am fairly terrified of what the results will be. My family also thinks I worry too much (and I never even talk to them about it). I hope you are doing well!

RichOK
Posts: 8
Joined: Jan 2009

I must be one of the 650. I was diagnosed in January of this year. Had surgery in February, still have to start radiation; due to a problem with my lower jaw, and the radiation in the neck, they have to pull all my teeth first. That's being done next Tuesday, radiation starting two weeks after that.

It's an interesting trip. Hope things go well with you.

arianasaunt
Posts: 1
Joined: Sep 2009

My sister was diagnosed last year after 2years of pain and bleeding and her Dr. ignored it and kept telling her it was fibroids in her uterus. We finally got her to see another Dr. and that's when she had surgery and found out it was malignant. Her follow up in June showed mass in her ovaries and had hysterectomy on Aug. 31 (she is still in the hospital). It spread thru her large intestine and had to take out part or her intestine. Her doctor recommends chemo/radiation. We are all so scared. I spend days/nights researching about this cancer. Maybe I can get her to get online and share her experience with others and know that she is not alone and get some insights as well. Please post any suggestions or recommendations on how she get passed the shock and start fighting.
Hope your treatment is going well, and I pray for everyone who has this type of cancer.

nantee
Posts: 2
Joined: Apr 2009

I was diagnosed with a cancer called lalamoma in June, 08. That's all I heard after they said the word Cancer. It was leiomyosarcoma. I asked her to write it down. Never heard of this. Nobody else has either. Operated on in August. Removed a tumor the size of a peach attached to my bladder. Had chemo in October. Radiation in Jan-Feb. Now waiting. Getting a new scan in May. From what i read this stuff comes back. Help me learn more. How do we fight this??

Leiogirl
Posts: 2
Joined: Jun 2009

Hello I just joined this site June 5 th 2009 and wish I had been brave enough to come here sooner. I remember the day I was diagnosed with Leiomyosarcoma April 10 2006, it was my Mom's birthday as we sat together waiting for the doctor to come in and talk to us. I didn't even hear the name of the cancer as a friend at the time was taking notes and writing everything down. All I remember asking the doctor was how long did I have? He said "Well Cancer is classified in stages and your a Stage 4. Ok what does that mean? When Cancer is caught in it's earlier stages it's more easily treated and success is good. Ok get on with it was all I could think, is this man talking in riddles? Then he hit me with the knock out punch -- There is no cure for what you have -- the best thing I can offer you is hope. I felt like all the air had been sucked out of the room as he got up and left. Real smooth bedside manner right? Anyway they removed a golf ball sized tumor out of my right arm. But by then the Cancer had already spread down to my hips and curvy butt bone, lower back and a few different spots on the verterbra. I have had countless Chemos Adriomyson, ifosfomide, gemzar, taxol, doxilrubin, doxil, gemcidebeme (sorry about the spelling). I have just started a new medicine regimine of carboplatin, abraxine, advastin, and zometa. This is absolutely brutal. Severe constipation and neausea every dam day. After I had the tumor removed from my arm they radiated it and it has been clear. In fall of 2008 I underwent radiation to pelvic area and lower back. I was so sick. 52 days strait of the runs and most trips to the bathroom in one day was 21 times. I practically slept and spent my days on the bowl. Fun times!! I hate Cancer and chemo. I am so sick and tired of being poked, prodded, stuck, infused, pinched, sometimes I feel like getting in my car and driving off and never coming back. I mean how much more can one person endure? Anyone else out there feel like I do? I have yet to actually chat or meet someone else with this rare Cancer. If anyone can provide me with some inspiration it will be very much appreciated.

lilcuty77
Posts: 1
Joined: Dec 2009

I was just diagnosed with LMS in July of this year. It started in my uterus..I had my bone scan and CT and all came back clear. I'm going through chemo right now...Taxotere(sp?) and Gemzar. I'm terrifed..I thought I was alone..I'm so relieved that I found others who are going throug the same thing I am. I am only 34 yrs old.

dwinmtp
Posts: 2
Joined: Nov 2009

Hi - as you can see from my post above, I was also diagnosed in July. I thought I was just having a straightforward myoectomy, and it turned out it was ULMS. I'm sorry for your diagnosis - it just plain sux. Best of luck with your treatment. I'm new to this board so not exactly sure how it works, but I plan to check back.

Jackiemcq
Posts: 2
Joined: Oct 2010

Found my primary tumor because a mass was found in my lung first. Turns out that the primary location via pet scan was actually my uterus. Just had a hysterectomey last week and will have the lung tumor out on Nov 4. After that, I will need chemo. Since we found the met first, that would make me stage 4 and from what I have read, the prognosis is rather poor. Flat out lung cancer has a better survival rate t! I am very anxious to connect with others with this DX.....please email me directly at Nonnymiss1219@snet.net.

Health and healing to all! Jackie

Jackiemcq
Posts: 2
Joined: Oct 2010

Please email me directly at nonnymiss1219@snet.net if you want to make friends! Thanks! Jackie

gaylejensen
Posts: 1
Joined: May 2010

Hi Melody,
I was diagnosed with Leiomyosarcoma in October, 2008. I have had two different chemo treatments. The first one worked for 5 months and the second one did not work at all on me. I am now going to start my 3rd chemo treatments. I am so happy that I have had no side effects from either one of my chemo treatments and hopefully I won't have from my third chemo medication which will be Ifosfamide / Etoposide. I live in Minnesota and my Doctor is at the University of Minnesota. I think he is great. I hope this helped you a little bit. If you have any questions you can feel free to email me or call me.
Thanks,
Gayle Jensen

chrissygenovese
Posts: 5
Joined: May 2010

Anyone with LMS who have had a transplant in the past, please contact me at chrissygenovese@hotmail.com ... I ask that you contact me at this address because I am not able to log on here sometimes for a while. I will receive mail at my personal address much quicker than here.

My cousin, Anthony, is 20 yrs old and had a heart transplant 3 yrs ago on July 4th. He has just been diagnosed with this rare cancer (tumors both on his lung and on his liver). My aunt, his mother has been living at the hospital, Cleveland Clinic, where he is being tested to see what the prognosis is going to be, considering he is and has to be on immune suppressants. Difficult situation it is when you have to be on these drugs...the body cannot and doesn't have the ability to fight off anything it is presented with.

Anyhow, if anyone who has experienced this, please help by contacting me at the above email to let me know of your situation and where you stand with this whole thing. Any information that may help would be greatly appreciated, and any positive feedback would be a relief at this point, for our family is torn apart over this situation.

Thank you in advance for your help, and God bless! Hope to hear from someone soon!

Chrissy

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