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Last resort treatments


#1

Hi everyone,

not sure if this is the place but here comes my question.

Some background info

september 2011: 15cm tumor in my leg, No metastases and surgeery

But in 2012 is started ifosfamide/doxorubicine treatement for metastases in the lung. Nearly complete response after 6 cycles and they don't give more. But that was really hard. They cut me open that summer to remove nothing. So a long revalidation period and by the time i was good again ... It was back. Started that december with yondelis(=trabectidine). Highest dose very good response however breakdown of my muscles and other severe side effects... stop treatement next summer. Recovery period was good and then end 2014 restart with trabectidine. Cancelled after 4 cycles due tosevere side effects... stereotactic thearpy that summer. Which is unclear for me if it was a good thing or not? Anyone with good/bad radiationthearpy experiences? Started beginning 2015 again with yondelis but lower dose... (new metastases appeared, radiated areas unclear). Didn't work so started in my on gemcitabine/doxotel. Didn't work either I just heared.

So now I'm left with 2 choices: ifosfamide again or prazobanib (votrient)

Choose ifosfamide again.. however, thsi theraphy was so hard for me... Not sure I'm up to it... The votrient is a more dangerous option becuz of the bad placement of some metastases in the lungs.

Did anyone else got another option or suggestion? Or experience with rechallenge ifosfamide

Thank you very much


#2

Is surgery not possible because of the location of the metastases? If ifosfamide was shrinking your tumors, would it be possible to get surgery then?

You may want to look into cryosurgery to find out if it is an option for you:

http://cancerwife.com/content/cryoablation-freezing-killing-tumor-probes-creating-situ-cancer-vaccine

I had IMRT on my right lung in 2008. I developed fibrosis in my right lung which started to show on CT scans shortly after but it hasn't worsened with time and it does not cause any symptoms that I am aware of. I only got 1 recurrence in the right lung but 5 in the left lung so I think radiation may have helped, may be by making my right lung not as welcoming to sarcoma cells?


#3

There is talk of surgery if they shrink enough...

Had IMRT in the summer of 2014 on my only 3 metastases. As far as I know it worked well. however, the area is still unclear so they always write underlying reoccurence not excluded... . So nothing useful basicly...

Got now 3 new metastases... with one growing around a major bloodvessel...

Cryosurgery never heard of... Does someone has experience with it ?


#4

The link I gave you is from a person with synovial sarcoma who had cryosurgery on a metastasis in her lung. I know someone with another type of sarcoma who had success with it too (a slow growing type of sarcoma, ASPS).

Since you responded so well to chemo the first time, it may be worth trying again? Ifosfamide on a 14 days delivery schedule may be easier to handle?


#5

By the way, since you are in Europe, there are a few interesting clinical trials there. For example:

http://www.synovialsarcomasurvivors.org/forum/topics/nbtxr3-clinical-trial

http://www.synovialsarcomasurvivors.org/forum/topics/tazemetostat


#6

i completed 33 treatments of proton therapy in May and just got my pet scan results. The large mass in my right lung is shrinking and smaller tumors not treated have disappeared. I also had surgery to remove a large tumor June 2014’ regular radiation sept 2014 to kill any residual cells. New tumors showed in November 2014. Had 2 cycles of Doxie and ifex and was cancelled as tumor grew 20%. Then I found proton therapy at university of penn in Philadelphia, pa. So far it appears to be working.


#7

Thnx all for your replies so far...

According to my docter there were no study's available to me :). And Belgium doesn't have a proton therapy center. I know Germany has... :) I'll see if that is a possibility. Money is a bit of a problem probably though. I'm very glad to hear its working for you.


#8

Hi

Do you mind sharing more info about Yondelis side effects?

Thank you!


#9

Do you mind sharing more info on Yondelis side effects?

Thank you!


#10

Hi George,

I must stress that the yondelis side effects are very person dependent... . I met ppl without any side effects or only minor.

As for me they became severe as they continued to add up. Naussea was doable for me without strong medication. But I got a lot of muscle pain.. becoming worse after every treatment. I could even feel the muscles in my eye brows. Also I had quiete strong liver toxcicity which is more comon. No hearloss (maybe bit thinner). AWake at night alot becuz of the pain. But I stopped treatement becuz of the strong muscle damage I suffered each time. And 3th time, so 2nd rechallenge, (the lower dose) didn't work anymore.

A typicla cycle was like this. Got yondelis in the afternoon (24h run at home). Got very sick in the evening, red in the face as well. Then the pain started after day2. After a week i was better. But never fully recovered. No real issues on low blood values. Mainly my ankels knees and shoulders (so joints) hurted up to the point I couldn't walk anymore. That's when the first treatment stopped... :) But again I must stress that other ppl didn't really suffer from these muscle pains.... . So don't let it frighten you!

And in the end after the first treatemnt I was 6months chemo free! Then the first rechallenge started (worked well) but my body couldn't take it anymore. So they lowered the dose then.


#11

Could't you tell me anything fo the side effects of het proton treatments? Was it recommended by your oncologist. If I ask mine I think he will become very mad. :) Did Insurance cover it for you or ... ?

Taz said:

i completed 33 treatments of proton therapy in May and just got my pet scan results. The large mass in my right lung is shrinking and smaller tumors not treated have disappeared. I also had surgery to remove a large tumor June 2014' regular radiation sept 2014 to kill any residual cells. New tumors showed in November 2014. Had 2 cycles of Doxie and ifex and was cancelled as tumor grew 20%. Then I found proton therapy at university of penn in Philadelphia, pa. So far it appears to be working.

#12

The first radiologist had recommend I go to the sarcoma division at UPenn and meet with dr. Simone. My insurance paid for all 33 treatments. I did meet several other patients from Europe and South America who came to UPenn for their treatments. The only side effects was really fatigue and some foods didn’t swallow easily. Nothing that stopped me from eatting though.

I’m happy to say my tumor is now dead. I do have radiation pneumonia and will be on steroids till it clear ups. Finally an all clear (for now)after a year and half fight.

I would hope your Onocologist doesn’t get mad if your ask for alternatives that can may really help. That is their job. I would check out The University of Pennsylvania Hospital site. Look for the sarcoma group. They may be able to help. Good luck.
>


Kaiowas said:

Could’t you tell me anything fo the side effects of het proton treatments? Was it recommended by your oncologist. If I ask mine I think he will become very mad. :slight_smile: Did Insurance cover it for you or … ?

Taz said:

i completed 33 treatments of proton therapy in May and just got my pet scan results. The large mass in my right lung is shrinking and smaller tumors not treated have disappeared. I also had surgery to remove a large tumor June 2014’ regular radiation sept 2014 to kill any residual cells. New tumors showed in November 2014. Had 2 cycles of Doxie and ifex and was cancelled as tumor grew 20%. Then I found proton therapy at university of penn in Philadelphia, pa. So far it appears to be working.

#13

Previous week I had the ifosfamide... much better then the combo with the doxorubicine.... . What a big difference that was. Still 5days hospital ain't really fun but at home and almost recovered 'to 90% ;)'. After the second one I'll have a scan to see what will happen next...

PS: I often see warnings againt Votrient? Why?


#14

In for my second roynd of ifo today! Low count of white bloodcells but enough to start. Neulasta is not paid back for ifo alone so next time probably a problem but that are worries for next time… In 3weeks a CT scan to see if it worked…


#15

You mean the insurance won't pay for neulasta?


#16

Yes they dont pay back


#17

It doesn't make any sense :-(


#18

Owkey small update on the situation..

this week i call heaven and hell

Beginning of this week I had a CTscan after 2 sessions of ifo. I was 'happy' with the treatment as side effects were not to severe and I found I had decent life quality. So I went to the hospital Monday evening for a scan and returned on Tuesday to start treatment. By unch time I got the news that the chemotherapy had stabilsed my lung tumors and treatment was going to continue. :) Hip hoi happy. There was going to be an extra small thing , an echo of my colon as i had had some severe complaints with inflamantion of the colon. So a small check up nothing special. 6pm just as premedication has started the docter comes rushing in checking of there was no chemo attached yet. She rushed out again and 5min later she returned with the news a 5cm mass was found in my abdomen... . Next day a CT scan of the abdomen and waiting for the news if they ware going to continue ifosfamide.... The verdict was NO. No more treatment options are available they said. I asked about surgery but they refused... I'm starting Votrient today...

This news came as a complete suprise. It is still sinking in....

PS: I'm also on the list for the tazemostat trial


#19

I hope they take you in the tazemetostat trial... Good luck with votrient! Hopefully it gives you some time for more options to be available. This is a bummer. I never heard of metastasis to the abdomen :-(


#20

The metastasis in the abdomen came as a complete suprise.... I never heard about it either. Anyway in about 20min I take my first pill of pazopanib (votrietn)