Leiomyosarcoma Metastized to The Lung

On 10/31/2005 mary g. wrote:

Hi Buttercup, In response to your question regarding my husband's chemotherapy...He received Gemzar alone for one dose,then a combination of Gemzar and Taxotere the next with a week off in between. Then the regimen would be repeated. This occured from September 2003 until the end of April 2004. So far,from the postings I've read, nobody else has gotten this chemo combination. He did lose his hair, had a lot of fatigue,chills,sweats,etc but little or no nausea. I guess the stuff was pretty strong since they would give him something to prevent an allergic reaction before each dose.He just had his latest scan about a month ago and is still cancer-free. It has been a year and a half since the surgery with Dr. Sugarbaker. At our last visit with him, he suggested that my husband consider jogging since he is in such great shape! Maybe you could mention this to your doctors. Perhaps they could talk to Dr. Jeff Morgan at Dana Farber.I pray that this has been helpful information for you. God bless you in your struggle. Mary G.

Hello to All,

I am new to this site and find it truly inspirational. I am a 41 year old male and was diagnosed with LMS in August of last year. Had total resection of 18cm tumor from my abdomen. Removed my entire stomach,spleen and 30% of pancreas. Played golf five weeks after surgery--truly a gift from God. Seven weeks post op Received radiation to the tumor bed in abdomen daily for 6 weeks . Nausea and some additional weight loss, but another blessing is I've had a feeding tube (G-tube) which my wife and I decided to keep even when the surgeon said it was time to remove. It has helped me to supplement my nutrition during radiation. Finished radiation in late November and just had my first post op CAT scan. Got results last week and we were devastated to learn that I now appear to have a 2cm tumor on my liver and have a suspicious place on my kidney and diaphram. Have PET scan tomorrow to clarify and meet with my local oncologist on Wed to discuss results. My local oncologist does not seem to be to optimistic when he delivered the CAT scan news. By reading other messages, I have decided to seek out a couple of the top Sarcoma centers (MD Anderson, Dana Farber) for second opinions no matter what the results from the PET. Thank you all for your messages that date back some couple of years.

Now that I am in the metastatic diagnosis category, I am searching for any and all the advice, support and prayers I can receive. I would truly appreciate some responses. 

Mary G.... I hope all is going well for your husband and your family. You are all in my prayers.

Jax

On 11/2/2005 Duchess10544 wrote:

Hello Mary G, My daughter Kelly, age 38, was diagnosed in July '05 with stage IV Leiomyosarcoma with metastes to the lungs and bone. She is also on Gemzar and Taxotere using M D Anderson's protocol in Houston, Tx. The Taxotere is very hard on her system. We have had her on Coral Calcium since September, and she feels it is quite helpful. We are just starting her on liquid minerals and Essiac tea. Does anyone have any miracle alternatives they have found? The sarcoma doctors have given us an early terminal diagnosis, but we do believe in God's healing and prayers if it be his will.

Hello Duchess 10544. I just stumbled onto this site while searching and saw your letter.  I realize that it was written almost 2 years ago, but I'm hoping that your daughter is still with you and doing well.  I was diagnosed with Stage IV LMS last August, so I can identify with the situation.  My oncologist told me that statistically my expected lifespan was 3 years, but I told her right off to forget that.  I'm going for 30+ years!  I am taking some complementary meds which have done a great deal to help me. First is Paw Paw Cell-Reg; secondly, I'm taking Maitake Gold Compound; also I'm eating a bag per day of dried green tea leaves that comes sealed from China and is kept refrigerated at all times.  I am on the Gemzar/Taxotere regimen, and I agree that Taxotere creates real nasty side effects!! However, doing all this, my CT scans show a great deal of tumor reduction as well as a tremendous amount of necrosis (cancer cell death!)  My sister personally knew people who had used the Paw Paw and Maitake Gold with success (got rid of cancers after doctors had said there was nothing more that could be done)! The green tea happens to be distributed my a neighbor who owns the import/distribution on it and has told us of studies done where mice lived 30 times longer when they got the green tea leaves than the mice that didn't! The specific kind of tea is called Tai Chi Green Tea and there's a web site: www.taichigreentea.com. You sprinkle it on food in the morning as it has caffeine in it which might keep you up if you take it later in the day. We order the maitake gold through www.iherb.com and we get the Paw Paw from www.naturessunshine.com.  I wish you the best of luck and hope that this helps.  Karen

On 11/2/2005 Duchess10544 wrote:

Hello Mary G, My daughter Kelly, age 38, was diagnosed in July '05 with stage IV Leiomyosarcoma with metastes to the lungs and bone. She is also on Gemzar and Taxotere using M D Anderson's protocol in Houston, Tx. The Taxotere is very hard on her system. We have had her on Coral Calcium since September, and she feels it is quite helpful. We are just starting her on liquid minerals and Essiac tea. Does anyone have any miracle alternatives they have found? The sarcoma doctors have given us an early terminal diagnosis, but we do believe in God's healing and prayers if it be his will.

Hello Duchess 10544. I just stumbled onto this site while searching and saw your letter.  I realize that it was written almost 2 years ago, but I'm hoping that your daughter is still with you and doing well.  I was diagnosed with Stage IV LMS last August, so I can identify with the situation.  My oncologist told me that statistically my expected lifespan was 3 years, but I told her right off to forget that.  I'm going for 30+ years!  I am taking some complementary meds which have done a great deal to help me. First is Paw Paw Cell-Reg; secondly, I'm taking Maitake Gold Compound; also I'm eating a bag per day of dried green tea leaves that comes sealed from China and is kept refrigerated at all times.  I am on the Gemzar/Taxotere regimen, and I agree that Taxotere creates real nasty side effects!! However, doing all this, my CT scans show a great deal of tumor reduction as well as a tremendous amount of necrosis (cancer cell death!)  My sister personally knew people who had used the Paw Paw and Maitake Gold with success (got rid of cancers after doctors had said there was nothing more that could be done)! The green tea happens to be distributed my a neighbor who owns the import/distribution on it and has told us of studies done where mice lived 30 times longer when they got the green tea leaves than the mice that didn't! The specific kind of tea is called Tai Chi Green Tea and there's a web site: www.taichigreentea.com. You sprinkle it on food in the morning as it has caffeine in it which might keep you up if you take it later in the day. We order the maitake gold through www.iherb.com and we get the Paw Paw from www.naturessunshine.com.  I wish you the best of luck and hope that this helps.  Karen

Hi Karen,

I hope you are doing well.  Thank you for all the info.  I have been

looking for green tea leaves, obviously they are better than liquid??

Take care,

Donnamar

On 7/7/2004 mary g. wrote:

My husband was diagnosed with a high grade lm. in his left hip area 18 months ago. He had it resected which resulted in the removal of his left gluteous maximus and several surrounding muscles. Fortunately, his sciatic nerve was not involved which would have resulted in the amputation of his left leg. He had a double margin removed and reconstructive surgery to move some remaining muscles around so he would be able to walk. About 7 days after the surgery he was isolated while he received internal radiation to the tumor bed for 48 hours. He surprised everyone including the surgeon and physical therapist because he was able to regain his ability to walk MUCH faster than anyone had thought he possibly could. He then underwent 36 external radiation treatments. He felt fine and was getting his life back to as normal a condition as possible, although he'd been declared permanently disabled and had to go on Social Security at 57. At his first 3 month ct-scan we were horrified to be informed that the lm. had spread to both of his lungs. The oncologist who told us this had not even seen the scans as he was covering for our vacationing doctor. He calmly told us my husband was going to die within a year to 18 months and that he was very sorry, but there was nothing to be done. We asked about chemo and were told, "Look, you're feeling good right now and the chemo would make you sick. It won't help anyway so go home and get your things in order." We were nearly on our knees at this point. Since we live 40 minutes outside of Boston we made an appointment at Dana Farber where there is a sarcoma clinic. We had to wait a month for our appointment. Needless to say, we were in agony for the entire month. When we finally met with Dr. Jeff Morgan, an associate of Dr. George Dimitri, his first response to our horrible prognosis was "Who told you THAT?" He went on to assure us that there were any things they could do to treat my husband. I asked if that meant my husband would not be dead in a year and he thought that would be "highly unlikely". We were on cloud nine! We made arrangements to have his chemo administered at Commonwealth Hematology-Oncology in Worcester as it was more convenient for us. Dr. Morgan worked closely with Dr. Susan Donohue as the Chemo program began. It lasted for 11 rounds. My husband was given a combination of Gemzar and Taxotere. The team was very specific about giving the infusions more slowly than had been done in the past because that tended to be more effective at killing the cells. At the half way point my husband's ct-scan showed "substantial shrinkage " in all 6 tumors and the "poppy-seed" scatter of tiny tumors had been completely erradicated. It was time for more tears, even the nurse practitioner cried for joy with us. At the end of the chemo treatments only two of the tumors appeared active. We went back to Boston and met with Dr. David Sugerbaker, Chief of Thoracic Surgery at Brigham and Women's Hospital. This is basically the surgigal hospital for DF patients. He was very confident that he could get all the remaining tumors out, but would have to split my husband's sternum, spread his lungs and "remove anything that even felt suspicious". On May 13 the surgery was performed and completed in 90 minutes! Dr. S. came down to speak with my son and me. He felt my husband's prognosis was very good and that he seemed to be one of about 10% of leiomeiosarcoma patients where the mets had gone only to the lungs. He said the key was in getting it all and that he had done so. After more tears and a big hug for Dr. Sugerbaker, he went on to say that with the possibility of a repeat appearance in 2-3 years, which he would also remove, my husband had a better than 50% chance of survival. Two weeks later the path report showed that there had only been two active lm's and the other spots had been reduced to scar tissue and granulomas. The surgeon said that bumped my husband's chances for survival up even higher. We will go back next week for our 2 month's followup. My husband continues to feel better every day as his energy comes back and his wounds are healing nicely. He is still very tired which is no surprise considering the ordeal and emotional roller-coaster he's been on for the past 19 months. He will have his first post-op ct-scan on July 30. Naturally we are anxious and probably will be every time he has one for the rest of his life. The main thing is that we have hope now and feel like we just may be able to grow old together and see our grandchildren. Please make sure to go to a cancer center that specializes in sarcomas and always keep asking questions, searching, getting second opinions. If we hadn't, we'd be waiting for my husband to die in a month. What a difference a year has made! I should mention that we were on every prayer list in every church in our little New England Community. We also had a Chinese herbal doctor who had her PHD in Cancer Biology from Harvard. She custom blended vitamins and herbs to correspond to whatever stage of treatment my husband was at throughout the fall and winter. He is now on maintenance vitamins and antioxidants. The other factor which was HUGE, in our opinion, was our Reiki Practitioner who served as our friend and mentor throughout the past year.She is a cancer survivor as well. She'd been given 3 month's to live and is now seven years cancer-free. In early June on a beautiful Friday evening my son and I watched with a smile and tears in our eyes as my husband walked in the "Survivors' Lap" in his first Relay for Life. He was preceeded by Worcester's Firemen's Kiltie Band. All I could think was , "There goes our very own "Braveheart". Never give up there IS hope you've just got to go through hell's fire to do this, but it can be done. God bless you and good luck. Mary G.

my wife has lms and it has spread to her lungs,  we will be recieving the chemo in april at M.D. Anderson sarcoma center.  How is your husband doing?

On 9/29/2004 Princess281 wrote:

Hi, I am new to this site. I have (had) leiomyosarcoma that was on my liver and lungs and I am a patient at Cancer Treatment Centers of America. In July I was told no active cancer on my last visit. It is now Sept 29, 2004 and I am here for my 3 month check up. This place is a blessing. Also, pray - prayer helps. Never give up hope. Call Cancer Treatment Centers of America 1-888-816-5122 I will keep you in my prayers.

hi,  I am receiving all these messages years later.  But I would like to know how all are doing with lms which has spread to lungs.  how treatment is doing and if there is anything I should know.  my wife is recieving treatment at m.d. anderson for lms and it has spread to her lungs (small nodules in both lungs)  thank you

On 8/12/2005 Mikkijo wrote:

Hello I just found this message board and need some help. My lms was on the pancreas and then went to the lungs [both] I had surgery for the pancreas and now they want to remove the upper lobe of my left lung, then go back in and do the Right lung. I am going to Stanford medical center and have a team of doctors working together along with a sarcoma specialist. I am seeing a nutritionist and my family doctor is helping me sort through things. Any suggestions out there. I will be starting radiation of the pancreas after the lung surgery. What a roller coaster ride this has been. It was found in march, first surgery in may and the next scheduled for sept. Any info would be helpful.

hello,  my wife has lms and it has spread to her lungs, she will be recieving chemo in april.   How are you?  we are being treaded at m.d. anderson sarcoma center and would enjoy some feedback.   thank you,

On 3/14/2007 Kbookcat8 wrote:

 

On 11/2/2005 Duchess10544 wrote:

Hello Mary G, My daughter Kelly, age 38, was diagnosed in July '05 with stage IV Leiomyosarcoma with metastes to the lungs and bone. She is also on Gemzar and Taxotere using M D Anderson's protocol in Houston, Tx. The Taxotere is very hard on her system. We have had her on Coral Calcium since September, and she feels it is quite helpful. We are just starting her on liquid minerals and Essiac tea. Does anyone have any miracle alternatives they have found? The sarcoma doctors have given us an early terminal diagnosis, but we do believe in God's healing and prayers if it be his will.

Hello Duchess 10544. I just stumbled onto this site while searching and saw your letter.  I realize that it was written almost 2 years ago, but I'm hoping that your daughter is still with you and doing well.  I was diagnosed with Stage IV LMS last August, so I can identify with the situation.  My oncologist told me that statistically my expected lifespan was 3 years, but I told her right off to forget that.  I'm going for 30+ years!  I am taking some complementary meds which have done a great deal to help me. First is Paw Paw Cell-Reg; secondly, I'm taking Maitake Gold Compound; also I'm eating a bag per day of dried green tea leaves that comes sealed from China and is kept refrigerated at all times.  I am on the Gemzar/Taxotere regimen, and I agree that Taxotere creates real nasty side effects!! However, doing all this, my CT scans show a great deal of tumor reduction as well as a tremendous amount of necrosis (cancer cell death!)  My sister personally knew people who had used the Paw Paw and Maitake Gold with success (got rid of cancers after doctors had said there was nothing more that could be done)! The green tea happens to be distributed my a neighbor who owns the import/distribution on it and has told us of studies done where mice lived 30 times longer when they got the green tea leaves than the mice that didn't! The specific kind of tea is called Tai Chi Green Tea and there's a web site: www.taichigreentea.com. You sprinkle it on food in the morning as it has caffeine in it which might keep you up if you take it later in the day. We order the maitake gold through www.iherb.com and we get the Paw Paw from www.naturessunshine.com.  I wish you the best of luck and hope that this helps.  Karen

hello,   it has been a long time since your message I hope that you still are in the loop and all is well!!  My wife has lms and it has spread to her lungs, small nodules in both she will recieve chemo at m.d. anderson this april. curious to know how you are and if there is anything important we can share with each other.    thank you

It is now 2008 and I still have the same mets in both lungs. I am considered stable despite mm growth in some of them. I am taking Femara 2 weeks on, 1 week off. I have no new mets. Hanging in for 26 1/2 years with LG myxoid LMS that changed to endometrial stromal sarcoma. I am a rare case. Never met anyone this happened to.

R

On 2/18/2008 hubby wrote:

 

my wife has lms and it has spread to her lungs,  we will be recieving the chemo in april at M.D. Anderson sarcoma center.  How is your husband doing?

My husband is doing great. His last ct-scan was in November. All was clear. The oncologist told us he needn't have another scan for a year. We were overjoyed. All throughout his treatment my husband would tell her that he was the patient she'd write about  and she'd just smile. On our last visit he reminded her again and she said,"Yes,you will be!"It was five years to the day from his first surgery on February 13. On May 13 it will be four years since his lung surgeon declared him cancer- free following the surgery to remove the mets.

  He gets a little short of breath if he is VERY active since he lost quite a bit of lung tissue during the operation at Brigham and Womens,but other than that he does well.He is doing volunteer work at a historic site in town,giving tours, tending the gardens in the summer and serving as a butler for the teas that are held there. He walks our three active dogs each day and has become quite the housekeeper as I am still working. :-) The other wonderful news we received shortly before Christmas is that we are going to be grandparents for the first time in July! I was so afraid we'd never get to be grandparents together and now we are our shopping for tiny boy clothes for our grandson. The joy on my husband's face makes all the horror we lived through seem small in comparison.

   I will pray for your wife(and you) during her treatments. Again,as I stated in my first letter,we did EVERYTHING both physically and spiritually that we could think of to help him. M.D. Anderson is a great hospital with a great survival rate for sarcoma patients. I feel you will be in good hands.Dr. David Sugarbaker ,Chief of Thoracic Surgery at Brigham and Womens was my husband's surgeon in case your team wants to check in with him at some point.God bless you both during this difficult journey.Never lose faith. God really DOES perform miracles through the gifted angels He uses here on earth.

   If you need any further information or just want to chat,please feel free to send another message.Sometimes it feels like nobody truly understands what you're going through. I do and will be honored to help in any way I can.

                                                              Peace, Mary