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Choriocarcinoma Non Seminoma Germ Cell Cancer part of the Testicular Cancer Family

Choriocarcinoma Non Seminoma Germ Cell Cancer part of the Testicular Cancer Family

Posted by Davis on Apr 26, 2018 5:38 pm

Our son is diagnosed with Choriocarcinoma Non Seminoma Germ Cell Cancer part of the Testicular Cancer Family.  Does anyone know of clinical trials (either to particpate in or completed to review results) or additional treatment methods?  To date he has received 4 rounds of Chemo (12 weeks), RPLND Surgery and a tandem Stem Cell Transplant.  He is currently on Chemo to control the HCG levels.  Thank you.

Re: Choriocarcinoma Non Seminoma Germ Cell Cancer part of the Testicular Cancer Family

Posted by ashcon on Apr 27, 2018 12:10 pm

Hi Davis;

Welcome to the community - I am so sorry to hear of your son's cancer.
I am a cancer patient myself and I know the importance of family members and the extent of concern and caring that they have (my two 20-something daughters have been my rock!)

As one of the many mentors here, I can suggest that your son's doctor(s) are the best place to start for inquiring about clinical trials, if you haven't already had that discussion with them. 
There are a lot of factors involved in determining what, if any, clinical trials would be available and right for your son based on his unique diagnostics, treatments received to date, location, etc, etc.
 
This link from cancer.ca gives a good overview and a starting point for discussions with doctors.
Cancer.ca - Clinical Trials

There's also this Discussion Thread from last year: Clinical Trials. 
ACH2015‍ is another mentor on this site currently in a clinical trial for his cancer, and he may be able to chime in with further insights.

Best to you and your son.  Please check back in and let us know what you find out.
---- "Nothing ever becomes real till it is experienced." ----

Re: Choriocarcinoma Non Seminoma Germ Cell Cancer part of the Testicular Cancer Family

Posted by ACH2015 on Apr 28, 2018 9:51 am

Hi Davis‍ 

I agree with what ashcon‍ has recommended to you. Your son's oncologist or other specialist(s) are the best resources to determine clinical trials that your son may qualify for.

I am currently in an immunotherapy clinical trial in Ontario. I have had a recurrence of metastatic adenocarcinoma of unknown primary cancer. I have already had chemo - surgery and radiation during the first round of cancer treatments, and the door to clinical trials opened up for me with the recurrence. 

My understanding of clinical trials is that they can be offered when proven standard treatments fail to be or become ineffective against the disease. I have given you the link (below) for the Canadian Cancer Trials website. You can type in the specifics or click on the search for specific cancers.

http://www.canadiancancertrials.ca/

I can speak from experience, the criteria for participation are stringent and many tests may be required to determine eligibility. I also want to say that clinical trials are in place because the drugs or therapies have shown effectiveness in fighting a specific cancer, and are being studied for development into becoming a first line of treatment. 

From what you have told us of your sons treatments, it certainly sounds like he is receiving very good care. Please keep us up to date with what you discover and what the oncologist has to say about potential clinical trials.

Keep well

ACH2015 - Andy.
 

Re: Choriocarcinoma Non Seminoma Germ Cell Cancer part of the Testicular Cancer Family

Posted by Davis on Apr 28, 2018 4:09 pm

Thank you Andy and Ashcon.  We have spoken to his oncologist about clinical trials.  We will find out this Tuesday if there are any he qualifies for.  Andy, can you tell us a little more about Immunotherapy?  His oncologist mentioned this in our last meeting and said it was currently in clinical trials and we should look into it further.  Also, did your oncologist find this trial for you to partcipate in or did you find it yourself on the links below?

Thank you so much for your suggestions.  
Davis' mom

 

Re: Choriocarcinoma Non Seminoma Germ Cell Cancer part of the Testicular Cancer Family

Posted by ACH2015 on Apr 28, 2018 4:33 pm

Hi Davis‍ 

​I found the clinical trial about the same time my oncologist presented it to me. It is best that your oncologist researches for specific trials, and then can refer your son based on their belief the trial would be suitable.

​This link (below) is from the CCS website about Immunotherapy and the many types available 

http://www.cancer.ca/en/cancer-information/diagnosis-and-treatment/chemotherapy-and-other-drug-therapies/immunotherapy/?region=on

Immunotherapy involves using your own immune system to find, stop and destroy cancer cells. The link is very well laid out for understanding how immunotherapy works.

​The important thing is for you and your son to advise the oncologist that you are willing to participate in ANY clinical trials they believe may help your son.

It can be very taxing and frustrating trying to look up clinical trials yourself. You might try typing in Choriiocarcinoma or Non Seminoma Germ Cell Cancer in the clinical trials website I sent you in my last post, and see what it comes up with. That is just the beginning, and then you have to see where the trial is being offered, if it is recruiting, and what the inclusion and exclusion criteria are. Give it a shot, and you will understand what is involved. 

​Please let us know if your son's oncologist finds any trials he qualifies for. If so, the referral will go to the oncologist in charge of the trial, and an appointment will be set up for information sharing and liability sign offs.

Keep well

ACH2015 - Andy.






 

Re: Choriocarcinoma Non Seminoma Germ Cell Cancer part of the Testicular Cancer Family

Posted by Davis on May 3, 2018 6:39 pm

Thanks so much Andy.  The link was very helpful.  I did find one clinical study that is very interesting that we are starting the process to see if he qualifies.  If you have any other suggestions I'd love to here them.

Thank you!