3 rounds of BEP and no shrinkage of tumors

[TSX]

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'm replying to an older post here, but I wanted to bring up something that I don't believe has been mentioned yet. It won't help your current situation, but it may help others in similar situations who read this thread.

The surveillance protocol you described seems adequate to me - that is, IF it was testicular cancer. Other cancers can be very fast to grow/spread, and the normal TC surveillance protocol may not be adequate. It sounds to me like adenocarcinoma may fall into that category.

In my opinion the mistake is likely in the pathology report. How could adenocarcinoma be mistaken for testicular cancer? Is it so similar that a regular pathologist could not tell them apart under a microscope? If so, this should be a huge motivating factor for getting pathology reports done by someone with a lot of experience in TC.

-TSX

[Karen]

Tammy,
Sorry to hear about the CT results. Keep the faith and never lose hope. I realize this is rare and treatment experimental but lots of good outcomes come out of treatment trials. Have you expored cyberknife? Is it an option you can ask about to reduce the tumor load? You are Cary are in my thoughts and prayers.
Karen

[Savin16]

I'm so sorry to hear this, I don't know anything about this type, hell, I didn't know anything about testicular cancer at all, until I had to educate myself because someone I love has it. I HATE THIS DAMN DISEASE, and I am sorry for what you, your fiancee are going through. Your guys are in my thoughts and prayers. Keep us posted.

[tammytrull]

Next step

The CT scan results were not good. The tumors seemed to have grown while on Taxol and Gemzar. We are seeing the oncologist today and he may start a him on a platinum based chemotherapy, like Cisplatin along with Avastin. Cary has started using an herbal supplement called Anvirzel. And we're hoping this will be the winning combination. He is in a great deal of pain from the tumor sites. He may have to go see a Pain specialist because the narcotics he's taking are not really cutting it.
Dr. Einhorn was consulted but is not Cary's main doctor. He will be told about the recent results but I think he is out of suggestions. Adenocarcinoma which starts in the rete testes is very rare and so everything is experimental. I will keep you all posted. If anyone knows anything about the above please let me know. We are trusting God to heal him.

[italian_tc]

tomorrow I've a pet scan too...I'll put on a candle for you too...

[Margaret]

I am happy to hear your news for an upcoming wedding. I am sorry you and Cary have to go through this difficult struggle but I am glad you have each other for support.

Prayer and thoughts are coming your way.

Margaret

[Karen]

Tammy,
Congratulations on your engagement! You are in my prayers for good results from the next CT. Stay strong!

[tammytrull]

Still hanging in there

Sorry for the time its taken me to respond. Cary has just completed his second cycle of Taxol and gemcitabine. He will be having at CT scan on Wednesday, please pray for us. His quality of life has been so-so, he has been working though, which really makes him feel good (he's a carpenter)But his breathing has become wheezy and the pain has increased, we're not sure if this is from the chemo or the cancer, it's always hard to figure it out.
The good news, is that we are engaged! I believe Cary will pull through this. I can't wait for that day! His doctor has mentioned Avastin, and it may be the next form of chemo he'll be taking. He's also going to start taking Anvirzel, which is an herbal supplement from Honduras that is made from the Oleander plant. We've heard many great things about this treatment and how it's greatly helped the quality of life of those with cancer. I will keep you posted.
God Bless,
Tammy

[Hopeful]

The cancer center at USC is also an excellent place to go.

Also go to www.clinicaltrials.org to find clinical trials for testicular cancer. You're gonna have to play with the search options but there are possibilities.

Also look into Avastin if you do another chemo. Another procedure that might be available is Cyberknife. It's cutting edge technology and might be able to help.

Please, let me know if there is anything I can help you with. My husband went through cyberknife and Gemzar/Taxol too. Sadly, he passed away in April but we never gave up and kept trying.
Patti

[dadmo]

You may want to give Cedars-Sinai a try. Heres a link to their page . Sloan doesn't list any experts for Adenocarcinoma but they are running 4 trials. After several searches the page for Cancer Treatment Centers of America kept comming up you may want to give them a call. Here's their page . Remember what Matthias said

"inoperable" does not equate "incurable"

[matthias]

Tammy,

"inoperable" does not equate "incurable"! However, it sounds that Cary is outside the germ-cell tumor "space" which makes him more of a regular cancer patient.

Best wishes. /Matthias

P.S.: At this point of time, Einhorn/IU or Sloan-Kettering might not really be any longer your experts of choice. You probably need to find out about the primary treatment centers for adenocarcinoma.

So, after Dr. Einhorn saw the pet scan he said Cary was inoperable,very scary words. He said the only thing he could try now, was flying back to California and trying Taxol and Gemcitabine, which he said was a ¨shot in the dark¨ Cary´s cancer is not a germ cell tumor and that´s what makes it so tricky. We are hoping beyond hope for this to work on his tumors. Strangely the bep he was on did stop the pain. They say it did not minimize the tumors but it must have stunned them, because Cary was feeling better while on chemo...? We don´t know what to do... I looked up some clinical trials on the livestrong website, maybe they can help. Cary starts the treatment on tuesday the day after Christmas.
Tammy

[Scott]

I'm so very sorry, Tammy. We're here pulling for you and Cary, and we'll hold out hope that "shot in the dark" hits its mark or that we can find other ammunition.

[Scott]

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...?

LIVESTRONG SurvivorCare can help address financial issues, too. Do give them a call, and please keep us posted.

[tammytrull]

taxol gemcitabine

So, after Dr. Einhorn saw the pet scan he said Cary was inoperable,very scary words. He said the only thing he could try now, was flying back to California and trying Taxol and Gemcitabine, which he said was a ¨shot in the dark¨ Cary´s cancer is not a germ cell tumor and that´s what makes it so tricky. We are hoping beyond hope for this to work on his tumors. Strangely the bep he was on did stop the pain. They say it did not minimize the tumors but it must have stunned them, because Cary was feeling better while on chemo...? We don´t know what to do... I looked up some clinical trials on the livestrong website, maybe they can help. Cary starts the treatment on tuesday the day after Christmas.
Tammy

[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...?