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Stage IV Synovial Sarcoma


#1

I am a 44 year old man in Alaska, and it was suspected that I had a 8cm sarcoma on my abdominal wall with hypodense lesion metastases to the liver on Jan 10, 2013. The sarcoma was confirmed after a biopsy on the 21st. The biopsy hurt and created issues of pain and pressure in my abdomen, and on the 29th I admitted to the ER for these issues. Another sonogram showed growth to 10cm x 8cm and numerous nodules up to 3cm some of which were on the liver. The pressure I was feeling was fluid building up around the liver, ascites I believe. This was a lot of changes for 2 weeks, and I think the biopsy had something to do with it. I flew to Denver and had a liver biopsy that confirmed the metastases. It was recommended that I start chemo of Ifos and Doxarubicin which I have completed 2 cycles to date with a 3rd starting any day. The most recent CT scan shows possible shrinkage to 7cm of primary and nodules on liver not showing at all. This still leaves numerous nodules otherwise, some in mesentary with possible complications there. It is now April 4.
I have a lot of difficulty finding info anywhere of survivors of stage IV, which is much more serious than sarcoma without mets. Can anyone help me locate resources? I read somewhere of median life expectancy of 12 mos., but oncologists are pretty tight lipped about any of that info. My youngest son is 17 and I am an unmarried single dad. If I have a short time I would sure like to know so that I could draw out my life insurance and spend time with my boys, and start working to set them up as well as I can. The oncologists won’t tell me to go back to work, but if I am going to be around for a few years, I better figure out how to get back to work in order to pay for my insurance. Does anyone have realistic advise for this, or heard of a similiar situation?
Thanks, Michael


#2

Hello Michael. I feel your urgency and concern. My son was diagnosed 3 years ago at 23 years old. He also has mets to his lungs. So far, he has outlived the usual 12 month timeline that you usually read about. My recommendations to you is to stop reading the statistics. You are not a statistic and doctors just will not give a prognosis because everyone is different. James is still going strong three years later. Imsfighter91 has been battling this monster for 20 years. You might want to look into Social Security Disability as treatment can be unpredictable and your ability to maintain a consistency with time and attendance may be affected. I would look into what your options are while assuring that you can maintain your insurance. However, there is the Medicare option. Every day is a gift-with or without cancer. New treatments are on the horizon. Fight this monster every day and live every day to the fullest. Try not to allow cancer to define who you are. You could be here for many years or a few years. Attitude has a part in your prognosis, but again, nobody knows what any one person's prognosis is. It is totally dependent on attitude, emotional support, diet, exercise, assertiveness with your doctors, belief in yourself, ability to tolerate some treatments, love, patience and faith. Elodie is a wealth of information and she is a great resource. Everyone on this site is in your boat. Be strong, and I will keep you in my prayers.


#3

Ellen said it very well, statistics or your oncologist cannot predict what's going to happen to you. You should be prepared for the worse and best case scenarios. As she advised, you may want to apply for Social Security Benefits.

Synovial sarcoma in the abdominal wall is rare enough that you can find cases reported on pubmed:

http://www.ncbi.nlm.nih.gov/pubmed/?term=abdominal+wall+synovial+sarcoma

Is your oncologist a sarcoma specialist? Are you his first abdominal case? In rare situations, it's always good to get a second opinion...


#4

Hi Michael, I was diagnosed with Synovial sarcoma on the left side of my abdominal wall with mets to the omental is 7/2007. I was treated at Memorial Sloan-Kettering cancer center. In 2007 I had 4 rounds of Ifos and Adriamycin with mesna. When I was initially diagnosed my oncologist told me that I was stage IV and not operable. But I did really well on (AIM) the mets on the omental wall disappeared, the mass on the abdominal wall shrank from 9.6 x 7.5cm to 6.5 x 3.3cm and I was able to have surgery on Nov 19, 2007. I was cancer free for three years until 12/10 when they found a 0.7cm nodule in my left lung. my Dr's recommended surgery and I had it on 12/22/10, and no chemo. In Dec of 2011 they found bilobial mass in my left lung this time a bit more agressive one mass was 3.1cm and the other 3.3cm. The masses were one behind the other. This time I had to have chemo 2 rounds of Ifos/ etopiside. this time didn't work for me, but the masses remind stable. My thoracic surgeon recommended surgery he said he would be able to remove it, and so he did. I had surgery on Feb 15, 2012 so far so good. I will be going for my follow-up scan tomorrow and meeting with my doctors on Thursday. I'm just here to tell you not to give up. I live in Florida and travel to New York for treatment and surgery, when I was diagnosed in Florida in 2007, the oncologist said he had not treated any patients with synovial sarcoma I then met with over 20 oncologist and my case was reviewed by 20 more all over my state they all said chemo didn't work and that I was very advanced that I should get all my affairs in order cause I was look at about seven months. I then asked if I were one of there family members where would they take me and a few of the Dr's recommened Sloan-Kettering or MD Anderson or Dana Farber in Boston. That was almost 6 years ago. So fight on, and get a sarcoma specialist!!!


#5

Since your son is 17, he may be able to get a college scholarship from one of the foundations listed here:

http://www.finaid.org/scholarships/cancer.phtml

Here are some links for financial assistance if you ever need it:

http://www.synovialsarcomasurvivors.org/profiles/blogs/financial-assistance-for-cancer-patients


#6

I agree with all of the advice above and I'd say, keep fighting but prepare, and enjoy life as well. While my husband didn't have the results we had hoped, the doctors never shared with us what they thought the timeframes were until we pressed. Ultimately, they admitted when we first walked in the door, advanced stage IV with a 13cm tumor in one lung and a 5 cm tumor in the other, with many small nodules scattered throughout, they said they though he only had 6 months. He had lived 18 months beating so many odds. He fought like hell the entire time in hopes he would beat the odds, but we also savored every minute of each other, our children, dogs and family and friends. HIs attitude through it all was positive, positive, positive and I believe it made all of the difference in the world.

I share this with you not as a "survivor" story, but as someone who has recently had to deal with these same questions.

I definitely agree with all of the financial suggestions; SS disability, grants etc. This will give you peace of mind on the financial side of things. My husband collected disability as well as withdrew from his 401K without penalty. There will be tax implications to deal with on this though, so I would suggest if you go this route, speak with a financial planner. Again, not sharing to overwhelm, but these are things that I have learned over the past few months, all of which were things I didn't know and I wish someone would have told me.

One thing that we did later rather than sooner, and I wish we had done sooner was engage with palliative care professionals. I never realized what they did and had I known they were there to help with these exact types of discussions, we would have talked to them sooner. For some reason, there is a perception that palliative care is only for the last stages and I found this could not be further from the truth. They were incredibly helpful in guiding us through to make sure our care was exactly what we wanted based upon what we wanted from life and the quality of that life for however long it was going to be.

Stay strong, stay hopeful and keep fighting in whatever way is best for you and your family.

Traceyb


#7

Thank-you for your thoughts, and yes I qualified for SSD right away for myself and my youngest son. So I am planning to retire. My thoughts are for you and your son.



Ellen said:

Hello Michael. I feel your urgency and concern. My son was diagnosed 3 years ago at 23 years old. He also has mets to his lungs. So far, he has outlived the usual 12 month timeline that you usually read about. My recommendations to you is to stop reading the statistics. You are not a statistic and doctors just will not give a prognosis because everyone is different. James is still going strong three years later. Imsfighter91 has been battling this monster for 20 years. You might want to look into Social Security Disability as treatment can be unpredictable and your ability to maintain a consistency with time and attendance may be affected. I would look into what your options are while assuring that you can maintain your insurance. However, there is the Medicare option. Every day is a gift-with or without cancer. New treatments are on the horizon. Fight this monster every day and live every day to the fullest. Try not to allow cancer to define who you are. You could be here for many years or a few years. Attitude has a part in your prognosis, but again, nobody knows what any one person’s prognosis is. It is totally dependent on attitude, emotional support, diet, exercise, assertiveness with your doctors, belief in yourself, ability to tolerate some treatments, love, patience and faith. Elodie is a wealth of information and she is a great resource. Everyone on this site is in your boat. Be strong, and I will keep you in my prayers.


#8

Thank-you for the info, much appreciated.




Elodie Espesset said:

Since your son is 17, he may be able to get a college scholarship from one of the foundations listed here:

http://www.finaid.org/scholarships/cancer.phtml

Here are some links for financial assistance if you ever need it:

http://www.synovialsarcomasurvivors.org/profiles/blogs/financial-as…


#9

Sally, I appreciate your taking the time to share, and I wish you well. I appreciate much hearing of your success, and wishes that it continue to go well for you.



surviver Sally said:

Hi Michael, I was diagnosed with Synovial sarcoma on the left side of my abdominal wall with mets to the omental is 7/2007. I was treated at Memorial Sloan-Kettering cancer center. In 2007 I had 4 rounds of Ifos and Adriamycin with mesna. When I was initially diagnosed my oncologist told me that I was stage IV and not operable. But I did really well on (AIM) the mets on the omental wall disappeared, the mass on the abdominal wall shrank from 9.6 x 7.5cm to 6.5 x 3.3cm and I was able to have surgery on Nov 19, 2007. I was cancer free for three years until 12/10 when they found a 0.7cm nodule in my left lung. my Dr’s recommended surgery and I had it on 12/22/10, and no chemo. In Dec of 2011 they found bilobial mass in my left lung this time a bit more agressive one mass was 3.1cm and the other 3.3cm. The masses were one behind the other. This time I had to have chemo 2 rounds of Ifos/ etopiside. this time didn’t work for me, but the masses remind stable. My thoracic surgeon recommended surgery he said he would be able to remove it, and so he did. I had surgery on Feb 15, 2012 so far so good. I will be going for my follow-up scan tomorrow and meeting with my doctors on Thursday. I’m just here to tell you not to give up. I live in Florida and travel to New York for treatment and surgery, when I was diagnosed in Florida in 2007, the oncologist said he had not treated any patients with synovial sarcoma I then met with over 20 oncologist and my case was reviewed by 20 more all over my state they all said chemo didn’t work and that I was very advanced that I should get all my affairs in order cause I was look at about seven months. I then asked if I were one of there family members where would they take me and a few of the Dr’s recommened Sloan-Kettering or MD Anderson or Dana Farber in Boston. That was almost 6 years ago. So fight on, and get a sarcoma specialist!!!


#10

Thanks for your reply. I did start with a sarcoma specialist in Colorado, and did my first round of chemo there. I arranged for followup chemo here in Alaska so I could be near home and my boys. The Dr in Colorado is still our consult, and I may go back to Denver for resection surgery if we can shrink the primary, and I can recover from the 6 rounds of chemo. Thanks again



Elodie Espesset said:

Ellen said it very well, statistics or your oncologist cannot predict what’s going to happen to you. You should be prepared for the worse and best case scenarios. As she advised, you may want to apply for Social Security Benefits.

Synovial sarcoma in the abdominal wall is rare enough that you can find cases reported on pubmed:

http://www.ncbi.nlm.nih.gov/pubmed/?term=abdominal+wall+synovial+sa…

Is your oncologist a sarcoma specialist? Are you his first abdominal case? In rare situations, it’s always good to get a second opinion…


#11

I am sorry for your loss. Glad you could share your experience. I plan to pull my 401k but had built up a lot of paid leave at work so still employed with insurance paid. I will resign after my time runs out, and then I can draw the 401k. Your advise is a great help to me Thanks



Traceyb said:

I agree with all of the advice above and I’d say, keep fighting but prepare, and enjoy life as well. While my husband didn’t have the results we had hoped, the doctors never shared with us what they thought the timeframes were until we pressed. Ultimately, they admitted when we first walked in the door, advanced stage IV with a 13cm tumor in one lung and a 5 cm tumor in the other, with many small nodules scattered throughout, they said they though he only had 6 months. He had lived 18 months beating so many odds. He fought like hell the entire time in hopes he would beat the odds, but we also savored every minute of each other, our children, dogs and family and friends. HIs attitude through it all was positive, positive, positive and I believe it made all of the difference in the world.

I share this with you not as a “survivor” story, but as someone who has recently had to deal with these same questions.

I definitely agree with all of the financial suggestions; SS disability, grants etc. This will give you peace of mind on the financial side of things. My husband collected disability as well as withdrew from his 401K without penalty. There will be tax implications to deal with on this though, so I would suggest if you go this route, speak with a financial planner. Again, not sharing to overwhelm, but these are things that I have learned over the past few months, all of which were things I didn’t know and I wish someone would have told me.

One thing that we did later rather than sooner, and I wish we had done sooner was engage with palliative care professionals. I never realized what they did and had I known they were there to help with these exact types of discussions, we would have talked to them sooner. For some reason, there is a perception that palliative care is only for the last stages and I found this could not be further from the truth. They were incredibly helpful in guiding us through to make sure our care was exactly what we wanted based upon what we wanted from life and the quality of that life for however long it was going to be.

Stay strong, stay hopeful and keep fighting in whatever way is best for you and your family.

Traceyb


#12

I just read all this advice.It is so good, all the aspects covered.One thing you have in the States that not everybody has here is insurance which gives you options and quality of life in amongst all of this. We had Insurance and it changed everything for us as Gary was able to keep providing for his family. So important to him.I gave up my work to care for him and his insurance was our income. I found the Medical professionals always gave the worst scenario first and were surprised at Garys tenacity.I liked the comment above on Individuality...the cancer is part of you and its nature does seem to reflect the person who has(just an observation).Gary( my Husband) was an extremely Dynamic multi talented businessman who travelled alot,numerous friends and very very social. He was made risky and difficult decisions daily.Also a very high Metabolism. His Cancer was very fast growing and seemed to echo his nature. Another friend who is a Pig Farmer..very Gentle sweet earthy guy..doesn't say much and moves slow and steady..has very slow growing Metastases in his lungs and is still chugging along on Votrient while my Gary has passed. Not sure if this is helpful but I found stories shared were good. Every best to you and your son.x


#13

First, I am so thankful for this site and everyone's input. MUCH APPRECIATED! I just wanted to post an update, not sure if I am supposed to add it to this section or not? Before this was diagnosed in Jan., I was an avid mountain runner. I have been trying to keep in shape during and between chemo sessions with some success. I am planning on doing an event on Thursday the day before my 5th(maybe last) chemo session of Ifos and Dox. I run or hike to a HR of 155 and try to not go over 160 so may end up with the red lantern award on this one, but it gives me a goal to look forward to and work towards. I usually feel like laying around the house and eating. It sounds like I should be thankful that I am getting fat, as many seem to lose their appetite. I am much slower than I was, really can't even call it running but the Doc say my hemoglobin is 9.8 and won't come up for about 3 months after last chemo.

The chemo takes me down pretty good and neupogen and levofloxacin are keeping the infections away, but my counts are getting lower each round(glad this is the last one I am committed to). We took CT scan at the end of April and the primary showed 20% reduction with next scan due June 11th. After this last chemo I felt very large in the abdomin area, maybe ascites. This worried me that the chemo may not be working anymore or working as well. The Votrient comments I have read here lead me to believe that may be my next course of action if/when this starts to grow again. My plan is to get thru round 5 and the recovery, and then recover some more. I am well aware that whatever plans I create are subject to change at any moment.

My youngest just finished his junior year with all A's and 4 varsity sports. Since I've been diagnosed he has pushed himself more than I ever could have. Maybe I should have learned not to push a long time ago. These boys have really been supportive, my biggest worry is that I am not doing enough to prepare them. Money seems so unimportant now. Maybe because that part is taken care of, or maybe cause it really is not important. I console myself with spending as much time with them as I can and loving on them, they seem to be good with that. I am straight up with them on where I am at physically, and what I think( maybe too straight up).

Well on to chemo #5 and I will update my status after the next scans. I will look forward to any comments on the Votrient as it interests me.

Take good care,

Michael


#14

Will you be able to have you sarcoma surgically removed? Stay strong, you're very goal oriented. Very proud of all you accomplished.


#15

Hello Sally,

There is no plan to remove the primary unless it poses an immediate risk, or we feel like it's adverse affects outweighed the complex surgery and recovery process. Basically we are just trying to extend my time as much as possible because the liver mets make eradicating it almost impossible.



surviver Sally said:

Will you be able to have you sarcoma surgically removed? Stay strong, you're very goal oriented. Very proud of all you accomplished.


#16

Keep the strong spirit up Michael! One day at a time...