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Synovial Sarcoma - Online Support Group

When and Where to get another opinion?


#1

My husband has been fighting this vile disease for just over a year now, and has had little success with any treatment. He is now on Votrient and we are hopeful that this will work, but we still have a few weeks until we know the impact this treatment is having. We have done Dox/Ifos, Trabectadin/Yolondis, then stopped for radiation to the largest tumor on his lung as it was impacting his esophagus, and then a Phase 1 Clinical Trial using T-cell immunotherapy, which showed mixed results (some tumors responded, some did not). We are waiting to see what the next step in the clinical trial could potentially be (it's on hold right now), and as mentioned, we are Votrient with hopes it will slow things down. One other thing to note is we continue to play a game of "whack a mole" with mets on his brain. He has had two gamma knife procedures, and upon check up yesterday, there is another met that needs to be treated yet again with gamma knife. Lots more history to go through here, but I'll get to the point...I am not sure if we are being aggressive enough and am considering having another doctor take a look, but am not sure when the right time is nor the right place. We are being treated at a leading Sarcoma referral center here in Seattle, Fred Hutchinson/Seattle Care Alliance, so I am not sure if traveling somewhere like Sloan Kettering or MD Anderson is the right thing to do. I'd appreciate guidance and any insights anyone can provide to me to help with this decision. I know that getting a second opinion is always a good thing, and will do ANYTHING that will help stop this disease. That said, I don't think he wants to spend time traveling etc. to hear the same prognosis.

We are nowhere near done fighting but do feel like we are running out of options.

Thanks in advance for your responses!

Tracey


#2

If you do not go get a second opinion now, will you regret it later? It is a big effort but it may put your mind at ease...

MD Anderson and Sloan Kettering offer trials that you won't find anywhere else. Dr Chawla in California also leads a lot of sarcoma trials:

http://www.sarcomaoncology.com/s_cv_Chawla.html

Trials are listed here:

http://clinicaltrials.gov/

Type 'synovial sarcoma', 'soft tissue sarcoma', 'sarcoma' or 'solid tumor' in the search box.

As far as therapies that are not offered everywhere:

Dr. Gerald Rosen at NYU: http://www.med.nyu.edu/biosketch/roseng04

Dr Littrup for cryosurgery: http://www.alveolarspsarcoma.net/index.php?p=trials

Dr. Rolle for laser surgery of lung metastases: phone 0049 352365102
Fackkrankenhaus Coswig GMbH, Neucoswiger StraBe 21, Coswig / Dresden D-01640 Germany.

Sashaminpin just reported her daughter went into remission after joining the ANGIO1 trial. Unfortunately this trial is only for pediatric patients( less than 21 years old) and there is no similar trial for adults:

http://clinicaltrials.gov/ct2/show/NCT00665990?


#3

thanks so much for sharing. it's amazing how many people have already read this!


#4

Elodie,

Great resources. I'm with you on getting as many opinions necessary. It's about staying ahead and having a

plan A, B, and C even if you need them.


#5

Hello,

I did have a second opinion after recurrence. I am so glad I did. I went to MD Anderson in Houston. I live in Florida, so it is not covieneint. But it is very worth it. The thoroughness and the education these Dr.'s have on this cancer is unbelievable. The hospital that otiginally treated me was good until recurrence 5 years later. It is a well renound teaching University here. But they DO NOT specialize in rare rare disease.

MD Anderson was really amazing. If you could see Dr. Benjamin he is like the counterpart to Dr. Rosen at NYU. He has been studying this cancer for years.

I am not in the same situation as you, I had 1 mass in my lung. But I feel much more confindent in my Dr's and my switch. I hope that helps somewhat.

Best wishes and keep fighting!

God Bless

Jodie


#6

Thanks so much for the information. We have actually had a major setback this week. My husband had a brain met that bled and is causing mobility issues. We have a strong feeling this was due to the votrient he was taking, as he had a tumor in his spleen rupture about a month ago. We could question if going back on the votrient was the right thing to do, but hindsight is 20/20. At this point we are trying to stop the bleed so that we save as much mobility to the right leg as possible (right arm is completely immobile). I think my husband had now lost the will to keep fighting since his disease is so far advanced and nothing by way of treatment has worked. It’s continually made things worse. He is also not up for traveling at this point, but I might try to do something by phone. I’ve heard great things about dr. Benjamin.

Thank you again for your responses. Any advice you can offer about our deteriorating situation are welcome.

Tracey


#7

Dear Tracey,

I am sorry, but unfortun.I understand.. I can only say that my prayers and thoughts are with him and your family. This disease SUCKS!

Anytime you want to talk I am here. It is not always easy for people to understand. Nor do they like to talk about the reality of this disease. I know for me atleast it is, my family hates to hear about the big "C" especially with this particular cancer because it is me that has it.

I hope that your husband is somewhat comfortable at this time.. Thinking and praying for you.

Jodie


#8

Thank you, Jodie. He is doing okay. I have contacted MD Anderson and am in hopes they might consult over the phone. I know it’s not likely but perhaps.

I appreciate your kind words and response.

Tracey