Leiomyosarcoma

lilcuty77 said:

LMS
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.

same timing
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.

Please contact me if:
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

Please contact me if:
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

Brian_in_Cali said:

Wtf? Seriously? - Just got back from Dr. office
wow... im..uhhh... holy crap...

i had a little bump on my leg, regular dr. said "its a cyst" referred me to a general surgeon, she looked at it and said "its a cyst, lets cut it out next week"... had the surgery... went back to get the stitches removed, and she sat me down and told me "we need to operate again, and remove the surrounding tissue because.... drumroll...it wasnt a cyst.

im sitting here with a copy of the pathology report for my "cyst" - Leiomyosarcoma.

I feel like i just got kicked in the head and the gut at the same time...
I have a wife and an 8 year old girl, and a life i rather enjoy...

Dont even know what to say...

So, Ive got an appt. for monday to have the tissue around the original operation site removed and a vague impression im going to need to get some MRI's and some additional tests etc...

I have no idea if theres more, elsewhere, or if this was it...

wow.. freakin lost right now... I dont even know what to think... I mean, how do i know what stage?... what the hell metastats is?... jesus... havent been in a dr.s office in 20 years... and THIS?

If i am really reading these boards right, i have a form of cancer that is seriously one in a million?

WTF???

jesus... im sorry.. hope i dont sound like lunatic... im just floored at the moment... started looking this up and landed here and my god.. if i ever have needed to vent it was now...

I'm a
breast cancer survivor, but my best friends' sister was recently diagnosed with leiomyosarcoma, so I went looking for info on it, both for myself and my friend. This web site is very informative, written by doctors, but in clear "English".
My prayers and very best wishes to each and every one of you.

http://www.leiomyosarcoma.info/

gretalala said:

Leiomyosarcoma response to your cancer site email and story
My wife Greta go this kind of sarcoma and had it removed from her abodomen. It touched the line between the bladder and kidney. She had the tumor removed June 4, 2010 and is doing chemo. It has been extremely life changing for both of us. She went to UCSF for the surgery. We went vegan after reading the China Study in that veggies don't feed cancer and animal protein does per the authors massive research at Columbia University. Also, saw the movie on Netflix about Sexy Cancer where the lady went into all of the alternative treatments along with the regular treatments.

Larry

My husband has leiomyosarcoma too
Hi, saw your post, my husband had a tumor on the renal vein coming out of his left kidney. They didn't know positively that it was leiomyosarcoma until they had the tumor out. His surgery was April 14, 2010 at UCSF. At the time his surgeon said he had been unable to find a case history of someone with this cancer in the same area! He just finished 5+ weeks of radiation. We were told that this would not affect his survival rate just managing the cancer trying to make sure it wouldn't come back to this same area. My husband is playing golf as I write, so he is doing well right now. He is still in alot of pain from the incision. I am scared every day worrying about it coming back. He actually has a spot in his lung but it is too small to do anything about. They can't even biopsy it. It may not be cancer. We saw a sarcoma specialist from UCSF that we paid for because our health insurance won't pay for us to see him as a patient. But it was on his advice that my husband had radiation. I hope your wife is doing well thanks for info you posted I am going to try to get that movie you mentioned.

gretalala said:

That was a shock to see a
That was a shock to see a response so quick, especially since the situation is so similar. I am very hopeful for your husband. Greta and I are on a natural high tonight. She got a CT scan today. 4 months after the operation to remove the tumor, it is clear, and the tumor hasn't come back. I am glad to see you are interested in the movie. The lady who made it is still writing a blog on Utube. The China Study book is very interesting also, especially the chapter on the on/off switch for cancer. The author has some videos on Utube. I don't know if our going vegan helped but it sure didn't hurt. We prayed and went vegan and got chemo (gemcitibine and decetaxel) and then she wil go to radiation. I hoope the best for your husband and all of the others writing in. This is very difficult for all of us, but the movie takes a very entertaining and informative approach to this issue. Let's keep in touch. We are at gretaal@pacbell.net.

Larry and Greta

Hi again, I was happy to
Hi again, I was happy to find the two of you as well. You feel like you are the only ones dealing with this awful stuff. My husband did really, really well with radiation. They said he might have loose stools, he didn't, not once. They said there was a possibility of skin irritation like a sun burn, didn't happen. He was tired, and he did have some nausea. Over all he did so well. He continued to work while getting his treatments, but this week because of fatigue, he went into work a couple of hours later. I hope this will help Greta going into the treatment! Who was the surgeon at UCSF? My husband's doctor was Chris Freise. He was fantastic! We too were very concerned about the CT after surgery. His was clear as well but the really good news was that the spot in his lung had not changed. The sarcoma specialist from UCSF said this was especially good because after a surgery your body sends out messages to the tissues to heal and grow. Cancer loves this too and you could easily have a lesion double in size in just a few months. He was very encouraged by there not being any change in size. Hopefully it is not a cancer! Congratulations on the clear CT!

I was wondering if Greta would mind telling me what type of work she does? Mike has worked at one of the Bay Area oil refineries for over 20 years. Apparently the type of chemicals he could be exposed to don't cause this type of cancer. Just curious, I guess we always wonder why and maybe there is no answer to that!

Cindy (Mike)

Ginge said:

Hi again, I was happy to
Hi again, I was happy to find the two of you as well. You feel like you are the only ones dealing with this awful stuff. My husband did really, really well with radiation. They said he might have loose stools, he didn't, not once. They said there was a possibility of skin irritation like a sun burn, didn't happen. He was tired, and he did have some nausea. Over all he did so well. He continued to work while getting his treatments, but this week because of fatigue, he went into work a couple of hours later. I hope this will help Greta going into the treatment! Who was the surgeon at UCSF? My husband's doctor was Chris Freise. He was fantastic! We too were very concerned about the CT after surgery. His was clear as well but the really good news was that the spot in his lung had not changed. The sarcoma specialist from UCSF said this was especially good because after a surgery your body sends out messages to the tissues to heal and grow. Cancer loves this too and you could easily have a lesion double in size in just a few months. He was very encouraged by there not being any change in size. Hopefully it is not a cancer! Congratulations on the clear CT!

I was wondering if Greta would mind telling me what type of work she does? Mike has worked at one of the Bay Area oil refineries for over 20 years. Apparently the type of chemicals he could be exposed to don't cause this type of cancer. Just curious, I guess we always wonder why and maybe there is no answer to that!

Cindy (Mike)

Hi Cindy and Mike,
Her
Hi Cindy and Mike,

Her surgeon was Dr Nauracura, probably spelled wrong. The follow up Dr at UCSF seemed good too. I can't remember his name now and Greta is sleeping, so I didn't ask. Since she went on chemo she started working less and less and now is working slightly less than 20 hours per week. She works in accounting in the Mental Health dept of Mendocino County. Luckily they have allowed her to be flexible with the hours. We have also been wondering where the chemicals that caused the tumor were from. She has not worked around chemicals that we can think of. I have read several books about this since her diagnosis and get the impression that the modern world we live in has quite a few carncinogens. That is one reason we started getting bottled water and organic food and go vegetarian since the diagnosis. The Dr. at UCSJ said the tumor could have returned in 3 months. Also, they said that without treatment after surgery there was a 50/50 chance that it wouldn't return and then a 15% even better chance it would stay away with chemo and radiation. She was gung ho to be here to watch the grandkids grow up, so we are trying anything to improve the situation. Thank God so far so good. The follow Dr. at UCSF said that they didn't know the cause, it doesn't show up in geographic areas, it doesn't appear to be hereditary, so it is of origin unknown. It is a bit lonely out here, with such a rare cancer that no one real knows a whole lot about. I have searched the internet and have found a lot of info. It appeared that the chemo now is much better for leiomyosarcoma than what they used prior to about 2002. That is when they were starting the trials for the chemo that they use now for it.

Larry

gretalala said:

Hi Cindy and Mike,
Her
Hi Cindy and Mike,

Her surgeon was Dr Nauracura, probably spelled wrong. The follow up Dr at UCSF seemed good too. I can't remember his name now and Greta is sleeping, so I didn't ask. Since she went on chemo she started working less and less and now is working slightly less than 20 hours per week. She works in accounting in the Mental Health dept of Mendocino County. Luckily they have allowed her to be flexible with the hours. We have also been wondering where the chemicals that caused the tumor were from. She has not worked around chemicals that we can think of. I have read several books about this since her diagnosis and get the impression that the modern world we live in has quite a few carncinogens. That is one reason we started getting bottled water and organic food and go vegetarian since the diagnosis. The Dr. at UCSJ said the tumor could have returned in 3 months. Also, they said that without treatment after surgery there was a 50/50 chance that it wouldn't return and then a 15% even better chance it would stay away with chemo and radiation. She was gung ho to be here to watch the grandkids grow up, so we are trying anything to improve the situation. Thank God so far so good. The follow Dr. at UCSF said that they didn't know the cause, it doesn't show up in geographic areas, it doesn't appear to be hereditary, so it is of origin unknown. It is a bit lonely out here, with such a rare cancer that no one real knows a whole lot about. I have searched the internet and have found a lot of info. It appeared that the chemo now is much better for leiomyosarcoma than what they used prior to about 2002. That is when they were starting the trials for the chemo that they use now for it.

Larry

Hi, Like the two of you we
Hi, Like the two of you we are trying to learn everything we can...we thought about diet changes and have made some, but the UCSF sarcoma specialist said that cancer takes whatever it needs from your body. If you cut out your sugar intake, it will take it from your body in other ways. Your body needs sugar, but the cancer will always take what it needs first. Also my husband lost 30+ lbs after surgery so they didn't want him restricting his diet at all. He was to eat whatever he felt like. He's gained 20 back and is good now. But I am curious what was Greta's tumor growing from, muscle, veins? If you'd prefer not to discuss it that's OK we understand. Mike actually came home from work on a Friday saying he felt like he'd eaten something "bad". He had alot of abdominal pain that radiated to his back. The next morning he got up and wanted to go to the ER. (Totally out of character for Mike!) So we went and they ran all kinds of tests and couldn't find anything wrong. They didn't do a CT just in case it was something he had eaten. But old us they would do it if we wanted it done. Mike decided to wait and see, promising to come back if it got worse. They gave him something for the pain. It didn't get better by Monday morning we were back in the ER and the same doctor was there so he immediately did the CT scan. Several hours later they told us he had a 4cm tumor on his adrenal gland. They are almost always benign (95%). Then it took 2weeks to get a biopsy done. The biopsy was "inconclusive" but showed spindle cells which are not in adreanl glands. At this point I think the doctors knew it was probably LMS but wouldn't say it. They all agreed the best course was for it to come out. So April 14th the surgery was done and we didn't get a final diagnosis until 2weeks later after pathology was done with the tumor. It was so hard because it went from this little benign tumor, to we think it's something else, now we think it might be malignant, and oh yea, you will loose your kidney too. He also never really had any kind of symptoms that something was wrong! It was January 27th when they first found the tumor so it was at least 3 months of not being sure what was going on. Mike's tumor was a grade 3, mostly it was already necrotic (dying. It was a little smaller than they thought too only 3.2 cm. When he got the radiation the doctor said this isn't going to change is survival rate it is just to manage the cancer. They don't want it coming back to this area. Mike looks really good, you wouldn't believe he he's been through all this. We seem good to others but it is so hard! We have a great family support and lots of good friends and most of all have a strong faith and know this has helped us through this ordeal. But it is still the most frightening thing we have had to deal with. We too have grandchildren, Caitlyn is 6, Jack is 4, and Peyton is 18 mths. Jack is very close to his grandpa I don't know what he would do without him. I know this is a strong incentive for Mike as well. Sometimes when I feel sad I just go see one of the kids!
Sorry if I've gone on too much, it just seems like we needed to find someone else who knows what we are thinking and feeling. Thanks

Cindy

Marvusman said:

I have been dealing with
I have been dealing with Leiomyosarcoma since 2009 when I was 27. I'm one of the youngest people to ever have a whipple surgery for cancer it is usually a surgery for Pancreatic Cancer. I had a recurrence recently and hadto have another surgery where they cut through my already healed scar. I am recovering now and awaiting the start of GLEEVEC most likely. The pathology has them beating their heads against the wall as I have a hybrid tumor which is a cross between Leiomyosarcoma and GIST tumor. It also has a small cholangiocarcinoma attached to it. So now I am battling 3 different cancers. My original tumor was 13 cm the size of a grapefruit! I was also high grade with a high mitotic index and was located deep within my abdomen the worst location. Everything was and is against me yet somehow I keep dodging bullets and also have been lucky enough to avoid metasteses. I'd like to chat with anyone who has either had an abdominal Leiomyosarcoma or a whipple surgery. It's nice to compare notes and see if what I am experiencing is accurate.

Ditto
Please see the comments above from gretalala. Much the same as Marvusman for my wife Greta. She had partoneal leiomyosarcoma, which is in the abdomen, but touched the tube that connects the kidney to the bladder. It was a tough surgery in the removal of the tumor to get margins, but they did it. It was removed June 4, 2010 and she chemo after that.

lilcuty77 said:

LMS
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.

How are you doing now?
Please email me directly at nonnymiss1219@snet.net if you want to make friends! Thanks! Jackie