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Chemotheraphy for Synovial Sarcoma


#1

My husband had three cylces of chemotherapy ( doxurubicin, Ifosfamide, mesna, dacarbazine). In his case (synovial sarcoma- right knee) Chemoteraphy didn't work. The response to chemo was minimal. Does anyone know someone with synovial sarcoma who had a good response to chemoterphy? what combination of drugs did they use?


#2

I had a good response to chemo (doxirubin, ifosfamide and mesna) when I was initially diagnosed. But when I had my 2nd recurrence I had (Ifosfamide and etopiside) and had no responce.


#3

My lung tumors were always stable or minimally responding to chemo. I think in my case, it just means the tumor cells were minimally active while conventional chemo targets cells that divide fast. In fact, my lung tumors never grew fast while we were watching them before initiating treatment.


#4

Hi Rumba. I have also had positive results from five courses (3 days/wk) of Doxorubicin, Ifosfamide and Mesna for a tumor in my left calf. This was followed by 12 weeks of radiation and surgery. That was two years ago. Today I am being treated with high dose Ifosfamide and Mesna for a reoccurence. We have already seen some shrinkage after two rounds (4 days/wk) and starting my 5th round today! Please let me know if you have any questions. Best of luck, Darren


#5

Hi,

The regular chemo Doxurubicin + Ifosfamide did not work for me either. However, when we switched to High Dose Ifosfamide alone (17mg over 48h non stop), I experienced a 30% decrease in just one cycle. No significant decrease was noted with the subsequent two cycles, but at least things have been stable even without any further treatment.


#6

Did you do chemo before surgery or after. Having just had the tumor removed 6 weeks ago (SS abdominal large, high grade), I don't know what to expect as to followup. I know any missed cells can go to the lung. Does chemo help in this case.?


#7

Chemo can help delay the return of synovial sarcoma but it usually doesn't prevent metastasis. That's probably because chemo targets the fast dividing cells leaving the dormant ones untouched. And some synovial sarcoma cells can stay dormant for years.
Ellen said:

Did you do chemo before surgery or after. Having just had the tumor removed 6 weeks ago (SS abdominal large, high grade), I don't know what to expect as to followup. I know any missed cells can go to the lung. Does chemo help in this case.?


#8

My boyfriend is on his second round of high dose iFos , etoposide and Mesna. He had a 30% reduction in a softball size tumor on his pancreas and a shrinkage in his lung tumors. The Neulasta shot is really hard on him and he seems to have the most problems with it ( we think) . We are looking for clinical trials and Elodie has been a great help. Now were just waiting on hearing back from his oncologists.


#9

My husband had a tumor they took out. they never did a biopsy. we found out a month later. it wasnt removed properly and there were cells left behind when the 2nd dr did surgery and took out more tissue...while he did that my husband had a radiation blast during surgery and he sprayed something on it Ic ant remember a the moment.. I think it was liquid nitrogen. after that he did 30 rounds of radiation. after that he did 5 rounds of chemo... in for 5 days wait a few weeks be back again... it was ifos and doxy... he made it through. the hardest part with this is everyone is different and reacts differently. When you have a rare disease, theres no money in "finding a cure" so we dont get more research... In all of my researching the one thing I found when i read success stories, everyone had had chemo. Some dr say it doesnt help some say it does... its a personal choice you have to make.... Is your dr a synovial sarcoma specialist? hang in there... god bless


#10

I did six rounds of Aim (Doxorubicin, Ifosfamide and Mesna) which overall shrunk my tumors on average 50%. While I was healing from chemo before my surgery, my tumors grew significantly. I had my entire left lung removed 2 1/2 weeks ago, where all my SS was located. It was a successful surgery, however pathology showed some SS cells on my diaphragm so I will need radiation to hopefully get rid of that. I'll also do two rounds of Ifos to "mop up" any remaining SS cells.

My surgeon did an excellent job of explaining chemo and SS, and how that works. When studies say chemo doesn't cure SS, what they mean is that our bodies couldn't possibly handle the amount of chemo SS would need to be cured. Chemo does kill SS cells, just not effectively enough to be a cure. When in the form of a tumor, it would take too much chemo. When you may have random SS cells floating around, the right chemo would be effective, so the chemo I need to take after my surgery could possibly be beneficial. It's a crap shoot sometimes as to which chemo is most effective for each individual case. I'll do two more rounds of ifos and hope that helps. Either way, I still have SS in my body (on my diaphragm).

I have accepted that SS will always be a part of my life. I'll have to scan every couple months after I'm finished with my upcoming planned treatments (chemo and radiation). I'm just not going to let it upset my life. There is still joy to be found each day, life to be lived.

Is surgery not an option? Or are they trying to shrink it before surgery?


#11

Can you please share strategies for coping with chemo? For my husband it is the hardest part. He had a bad reaction last summer. Is currently recovering from a second surgery due to local recurrence. I am trying to get him prepared for this round. I believe they will use ifosomide this round and not doxorubicin which he reacted badly to previously. He wants to go with an alternative outpatient regimen as he thinks it will be better tolerated. But it is a fact that ss is responsive to ifosomide for most people. His call of course but wanting to think through all options

Any strategies for coping with chemo would be appreciated

Thank you


#12

What was his bad reaction like George? Was it similar to the one in the following discussion?

http://www.synovialsarcomasurvivors.org/forum/topics/high-dose-ifex-reaction

George said:

Can you please share strategies for coping with chemo? For my husband it is the hardest part. He had a bad reaction last summer. Is currently recovering from a second surgery due to local recurrence. I am trying to get him prepared for this round. I believe they will use ifosomide this round and not doxorubicin which he reacted badly to previously. He wants to go with an alternative outpatient regimen as he thinks it will be better tolerated. But it is a fact that ss is responsive to ifosomide for most people. His call of course but wanting to think through all options

Any strategies for coping with chemo would be appreciated

Thank you

#13

Bad reaction included big increase in phantom pain (which was completely dismissed by doctors), neutropenia resulting in another week in hospital, and feeling like he simply was not going to live through it. He almost gave up basically. He did not continue

Now situation is small lung mets and they likely will recommend chemo and possibly surgery once he recovers from forequarter amputation two weeks ago

He did very well with radiation and surgery. Chemo may be too hard especially if it does not produce results. We are both trying to go into this thinking it could be better this time


#14

I don't remember what was my level of phantom pain during chemo. If it had increased significantly, I guess I would remember. I generally don't get phantom pain, except after surgery when anesthesia starts wearing off and also after my stump sweats significantly. I've been thinking it may be due to an electrolyte imbalance. But who knows? Still, I am wondering if his pain would improve if they increased the level of hydration by IV... There are other things his oncologist could try, like infusing the drug at a slower rate.


#15

My oncologist is not recommending that I add chemo and was upfront about it's effectiveness being questionable for synovial sarcoma after surgery. I've delayed my amputation of my left arm for the last year and half, now trying to get it done next week and without chemo. At diagnosis they offered me doxirubin, ifosfamide, but I refused.


#16

I declined chemo. March 6 was 19 years cancer free. No recurrence. Surgery and radiation was my course of treatment.


#17

We've had the same regimine and unfortunately we haven't had any positive results and the doctors' are hitting my poor husband hard. I realize your post was awhile ago. How are things going for you now? I'm so sorry I don't have better news.

Here's a link to a blog that I write and there is some stuff about chemo there if it helps...www.confessionsfromthecancerhouse.org


#18

I don't know if this will help you or not...hopefully.

http://confessionsfromthecancerhouse.com/2015/04/20/why-chemo-sucks-so-bad/

George said:

Can you please share strategies for coping with chemo? For my husband it is the hardest part. He had a bad reaction last summer. Is currently recovering from a second surgery due to local recurrence. I am trying to get him prepared for this round. I believe they will use ifosomide this round and not doxorubicin which he reacted badly to previously. He wants to go with an alternative outpatient regimen as he thinks it will be better tolerated. But it is a fact that ss is responsive to ifosomide for most people. His call of course but wanting to think through all options

Any strategies for coping with chemo would be appreciated

Thank you

#19

Hi Adrienne
Wow.your blog is spot on and incredibly helpful. So we moved forward with AIM again and a reduced dose from previous one. Ended up back in hospital with neutropenia 3 days later. Said he had the lowest blood counts of the census that day. At least he had enough of his sense of humor left to ask for his medal. At one point, I really did think he was dying. I just stopped talking to people at all because really what can you say other than things are not going so well

But a miracle or God opening a door…his Oncologist was very supportive. Agreed to help us consider other options. Said he needs several weeks to recover first after several rounds of platlettes and red blood and other stuff like magnesium and broad spectrum antibiotics That felt like a true acknowledgment to him. And here is the miracle or we hope it is…Yondelis can be next on compassionate use basis to see if works for him and less harsh. It is being fast tracked for FDA approval but in meantime participating cancer hospitals can offer on trial basis.
The drug manufacturer is offering it to 3000 patients in US. It is one 24 hour cycle plus premed every 21 days. So I pass this on to you and anyone foe whom AIM is not working or cannot be tolerated. Still chemo. Still harsh but maybe a better option

Thanks again for your message. It gave me strength


#20

I'm so glad for so many reasons! I'm glad because there was an option for you, because that means there's potentially an option for us. I'm glad that something that I'm doing could actually be helping someone - which the worst of this whole thing for me, I feel so useless. I haven't heard of Yondelis yet, but I'm going to do some research. I'm so sorry your husband was having such a hard time for a while. That breaks my heart. I'm so happy that a service like this exists. We can give each other strength.

Best,