Half way through 4X BEP, PET/CT not much improvement

[Mike'swife]

My husband was diagnosed with pure choriocarcinoma (negative testicular ultrasound) on 3/08 (after 4 weeks of complaining of sciatica type pain and multiple Dr visits and xrays, after 3wks they finally did blood work and it showed a possible infection, so off he goes to the ER he goes, during his workup multiple lung nodules were found, so he got admitted for cancer workup) he was started BEP x4 on 3/09. They found a large retroperitonium mass, multiple lung mets, 5 small brain mets, a few liver mets, and 1 spleen mass. Diagnosis was made by a biopsy on his retroperitonium mass. He has had 3 Cyberknife treatments for the brain mets. At diagnosis beta HCG was 330,630 After first 5day Chemo 759,672. At start of 3rd cycle (6wks) 1240. He also just had a PET/CT at mid treatment that has me very worried and concerned. It showed the tumor size on retroperitonium was the same, but with faint light. It still showed multiple lung mets with light. The liver and spleen mass have grow in size, but no light. He did not have PET prior to Chemo due to the urgency to get started. Also the cough he had at diagnosis is back since stopping the Decadron and has been on antibiotics without much improvement. He is having another pulmonary function test, but I read somewhere that might not be a good diagnostic tool for pulmonary toxicity. Very concerned about the results and since his tumor markers have consistently been dropping his oncologist was expecting better results as we were as well. He feels good only fatigued at times. He originally lost 35 lbs, but is now gaining some weight back.

[Paul54]

Mike's Wife,
I am so sorry you are going through this. We've have several members who have battled large scale chorio and won, but it can be a long battle. I would not be surprised if his doctor moved him into second stage chemo such as TIP or VIP right after BEP. Can you tell us where Mike is being treated? Hopefully you have access to a center of expertise, or at least Mike oncologist is consulting one such as Indiana University or Memorial Sloan Kettering.

Best wishes and prayers for both of you.
Paul

[zbot]

my hcg more than tripled half way through BEP before it crashed down to 6. This is a sign of cisplatnin resistance. If his numbers start coming back after BEP I would skip VIP or TIP and go right to high-dose EP. After TIP my number began to rise almost immediately. Your doctor may recomend TIP if his numbers come back after chemo, but make sure he gets the high dose EP as well, it is a proven method to work for difficult cases. contact Dr. Einhorn at IU, he's the expert on TC. I'm currently in 3-month remission since my high dose chemo when nothing else would work. Best of luck, and know that you have options if BEP doesn't do the trick, although I hope very much that it does

[Mike'swife]

We are in Orange County, next county is Los Angeles. We did email Dr Einhorn twice with a response to have Onc call him or get a second opinion. We did have a second opinion at a center of excellence UCLA with their testicular cancer program director and he agreed with current treatment and follow up testing. Our oncologist did say he would be referred back to UCLA if it gets complicated and if he needs lymph node dissection. It's just everything I seem to read online is so negative when it comes to chorio it freaks me out and start thinking about what the next step will be, as I like to be informed ahead of time to ask doctor appropriate questions.

[TC Destroyer]

Hi Mike'swife,
Sorry to welcome you to the TC world, and on top of that the pure Chorio world. He has shown excellent response which is extremely awesome. know that it may take some time for his markers to reduce to normal. Here is what my HCG markers did during the course of my treatment, this is considered 'normal'.

Did you ask your Onc to call Dr. E? and if so did he?

RPLND is not the correct course of action for pure chorio, this can increase the risk of the disease spreading further.

No reason to doubt that the current treatment is not working, but if his pulmonary function is being compromised, VIP is excellent option to finish his treatment. If this treatment fails know that he still has excellent odds of beating this disease with HDC, especially since he is showing perfect chemo response. zbot is right, second line treatment for pure chorio is HDC, any other chemo will only increase the odds of the disease becoming chemo resistant.

Do not let the PET get the best of you, DR. E is a firm believer in false results in reference to pure Chorio. HCG is the #1 tell all of active disease, nothing else. A CT will show if there is any rise for concern (tumor increasing in size) there is no need for the PET.

He should have an MRI about 2 weeks after he finishes his treatment, this is the best way to see the Brain mets.

Please no not hesitate to ask any questions,

Tell Mike he has an ARMY of TC warriors on his side. He can beat this!

John

[TC Destroyer]

The liver and spleen mass have grow in size, but no light. ....
Very concerned about the results and since his tumor markers have consistently been dropping his oncologist was expecting better results as we were as well.

Sorry for double posting, but I felt I should also comment on this statement. My liver mass (dead tissue now) is still visible on CT and wasn't smaller than size @ diagnosis until a year after treatment. Chorio is a very vascular tumor containing a large amount of blood for it's size. When it dies it simply bleeds out, It becomes a gelatinous mass of necrotic tissue and when present in your liver, it takes your body a long time to clean out.

As stated before as long as the HCG is dropping, the chemo is doing what it is supposed to do.

I am 4 years post diagnosis and you can still see my liver mets. As long as the HCG is normal and the CT shows no growth anywhere, I am considered good.

John

[Mike'swife]

Thank you for your responses and encouragement. TC Destroyer your case is both inspirational and hopeful. We continue to pray and try to gather as much info as we can. There is still a question whether the primarily is extragonadal retroperitonium or a burnt off testicle. Questions on RPLND, when we saw an uro/onc at our center of excellence he was recommending RPLND after chemo depending on the residual mass. He was aware it is pure choriocarcinoma, now could that be because of the retroperitonium being possibly the primary? I will keep updating with any changes. The pulmonary function test was normal, yea.

[TC Destroyer]

As far as I know the only time surgery is ever recommended for pure chorio is to remove the scar(dead) tissue. Since chorio spreads easily through the blood, surgery will only increase the risk of it popping up somewhere else. It only takes on cell of chorio to become a massive tumor.

Even if it is extragonadal (My case was burnt off in the testicle) HDC is the correct course of treatment if markers begin to rise.

Keep in mind I am not a physician nor an expert on TC, my advice is from my own experience with Pure chorio. I would ask your onc or the UCLA doc to consult Dr.Einhorn on the specifics. They may be a center of excellence, but Dr. E is the world expert.

I am glad you are preparing for the next step, knowledge is power. having a plan greatly reduced my anxiety about my TC coming back, I hope it does the same for Mike.

My other advice would be, if unfortunately Mike does need HDC; if at all possible he get it done @ IU.

Please don't hesitate to ask any other Q's.

[Mike'swife]

Thank you for the information, it answered my concern about how long it takes for some tumors to shrink. I will ask our medical Oncologist again to reach out to Dr. Einhorn. I would love to go to Indy to have the treatment, but our insurance will not cover, plus Mike would never agree to use all our resources (always the caretaker) I would be willing to give up any possessions or money to get the best care. Any information is valuable to us, so keep it coming.