3 rounds of BEP and no shrinkage of tumors

[tammytrull]

My boyfriend had his orciechtomy in June, his oncologist suggested at the time that they wait and see, before proceeding with Chemo since the cat scans did not detect any tumors, however his urologist urged us to start chemo since there appeared to have been lymph invasion. We opted to wait and see and four months later he had a CT scan showed tumors in his Retroperinium, his liver and lungs. We were shocked and scared at how aggressively and quickly things spread. We were also angry at the doctor for not having checked him with a CT scan earlier. See, the tumor marker blood tests were all clear, however after the fact he told us that sometimes certain tumors don't secrete the protein needed to detect them in a blood test Why he hadn't had a CT scan earlier still bugs me today. After this he was put into the hospital that night and started Chemo the very next day. He has stage 4 non-seminoma testicular cancer. Now after 3 cycles of BEP his CT scans show no decrease in his tumors, we are again in shock but now I feel like it's time for a second opinion, but how do we go about this? Who do we go to? We live in Southern California. If anyone has any suggestions, or advice, I'd greatly appreciate it.

[Scott]

Welcome to the forums, Tammy. I'm sorry to hear about your boyfriend's and your struggle.

Although it doesn't change the present situation, I have to wonder: What was the surveillance schedule? I had blood tests and a chest x-ray every month and a CT scan every other month in my first year of surveillance.

Also, was there teratoma in the pathology report?

You'll find several testicular cancer experts in California in the Testicular Cancer Resource Center's list. It would be a very good idea to have your doctors consult with one of them.

[tammytrull]

Hi Scott,
I've looked up the doctors in the Testicular Cancer resource list but there were only two listed for Los Angeles. One was a wrong number and the other I'm waiting for a call back.

I've never heard the term teratoma, so no I don't think he had any signs of that.

From June til October when he started chemo he had blood tests every month, 1 CT scan in July and then not again til September, when they saw that the tumors had spread so dramatically, they immediately started chemo. I think there has been definite negligence and that's why we want to look for a more qualified oncologist.
I believe one of the reasons there was such a carelessness is because Cary, my boyfriend didn't have any insurance at the time. Now he's got state insurance, which helps some, but we are still waiting on Medical.

[L.A. Chimp]

Tammy --

You should call Dr. Daniel Lieber at The Angeles Clinic in Santa Monica or Dr. Skinner at Norris Cancer Center at USC. They are both top-notch organizations in Los Angeles. Where are you in So Cal?

http://www.theangelesclinic.org/

[stevenh77]

Tammy, if you're in Southern California, I'm very satisfied with the treatment I got at the L.A. County / USC General Hospital. My oncologists (Dr. Shaye and Dr. Quinn) are always on top of things and they did a great job of helping me to manage the chemo side-effects. They may be able to help your boyfriend with high-dose chemo or possibly different chemo drugs. If your boyfriend needs RPLND ask to talk to Dr. Chandrosoma or Dr. Kim in urology. Most of the surgeons there have been trained by Dr. Skinner at USC and they have a lot of experience with RPLND surgery.

PM me if you need the hospital's address and phone numbers for oncology, urology and their general info/appointment line.

[danebert]

UC Norris is a good center and they are working on some new drug combo's. One possibility is that the masses contain teratoma. Was that present in the original path report? If so that might be the cause for no shrinkage. If not I would call Dr, Einhorn at IU to consult. If he is refractory he may need high dose chemotherapy. However, even if he is completly refractory high dose had a 50% or greater chance of curing him. Memorial Sloan in Ny also has a trial for poor risk patients that involves high dose with 4 as opposed to 2 drugs. That may be another option. However, before you get too worried check the blood markers. If they have gone down then the probability of teratoma is high in which case it needs to be surgically removed.

[BeachTech]

Dr. Skinner

Tammy --

You should call Dr. Daniel Lieber at The Angeles Clinic in Santa Monica or Dr. Skinner at Norris Cancer Center at USC. They are both top-notch organizations in Los Angeles. Where are you in So Cal?

http://www.theangelesclinic.org/

I would second that for Dr. Skinner. He is known for being one of the best on the West Coast.

BTW-Check you PM
________
YOUNGSWEET*****4U

[Lori]

My husband had tumors in his ab, chest and neck. He had 3 rounds of EP and high dose chemo - the tumors never shrank, infact some grew. When surgically removed they were all teratoma. Definitely get a second opinion (we went to Dr. Einhorn).

[Owen]

Tammy,

Sorry to hear of you and your boyfriends woes.

I was sooo lucky to have a friend who sold chemo drugs for a living act as my "patient advocate". I cannot beleive there is not a service like this yet, as having him help me though all the mumbo-jumbo was a great relief.

He was the one who pushed my oncologist to call Dr. Einhorn, because of the complication of having Hepatitis-C as well.

I have seen more than one mention here of starting non-profits for this or that. . . getting a doctor or nurse or physician assistant who knows all the jargon to go to Dr. visits with you seems like a very worthwhile service to have, and not just for TC patients either.

[tammytrull]

Dr. Einhorn and adenocarcinoma

THank you all for replying.
Cary (my boyfriend) is in Indiana at the moment waiting to hear what the next step is. Dr. Einhorn saw him this morning and said it looked like adenocarcinoma, a very rare form of testicular cancer. He did not sound promising. He is waiting for some results from a pet scan he did this afternoon to know how to proceed. If the tumors are removable he´ll have surgery however this may not work since his tumors have advanced so much. He mentioned doing a combo of taxol and gemcitabine. Does anyone have any thoughts on this? We´re so scared...We waiting on a miracle.

[dadmo]

tammytrull:
Adenocarcinoma is a cancer that affects the lining of the organs, from a quick search it really isn't a form of testicular cancer but in your boyfriends case it may have just presented itself in that location. At this point I would say he is in the right place to get proper treatment.

[tammytrull]

Yes, I believe so too. We´ll find out today what the next course of action is. The fact that it so rare is scary. Wish we could talk to someone else who´s been diagnosed with this. Dr. Einhorn said that it started in the lining of the testicle, like you mentioned, and that it doesn´t respond as well to chemotherapy as other tumors. We´re just praying and waiting for better news today.
Tammy

[Scott]

Tammy, I know you're in excellent hands with Dr. Einhorn. You might also contact LIVESTRONG SurvivorCare online or at 1-866-235-7205 to ask for more information and whether there are any relevant clinical trials. Hang in there and keep up the fight.

[dadmo]

Your boyfriend is in great hands with Dr. Einhorn but don't forget that Sloan Kettering is available for a second opinion. When my son was at Sloan I mentioned using IU as a second opinion and they were not insulted at all, I believe you will find that to be true with most centers of excellence.

[tammytrull]

Thanks, yes I feel confident that Dr. Einhorn is our best bet. I will look into the LiveStrong website for clinical trials. I will keep you posted. Thanks for your speedy responses. One of Cary´s main concerns is that he doesn´t have health insurance, and at this point he´s exhausted all of his savings, we´re hoping these doctors will still see him...?