Biopsy Results - Help Needed

[David1969]

I have just had my Biopsy results of my lymph nodes and the cancer has returned.

I originally underwent a RPLND followed by 2 rounds of BEP. Does anybody have any sort of idea what protocol I will face this time, as they want me to have Chemo again?

[Scott]

I'm sorry to hear more chemotherapy is in your future. Hang in there.

You'll find treatment information on page TEST-12 of the NCCN guidelines: VeIP (vinblastine/ifosfamide/cisplatin) or TIP (paclitaxel/ifosfamide/cisplatin). How soon do you expect to hear more details about the plan from your doctors?

[danebert]

I think most doctors would lean towards High Dose chemotherapy. I know it doesnt sound pleasant but concidering you were stage 2 to start, your chances of cure are very high. Dr. Einhorn at IU would probably recommend High dose chemotherapy. The guys at Memorial Sloan Kettering would probably recomend TIP ( taxol, Ifosomide, cisplatin ). You may have had microscopic involvment prior to your RPLND, in which case 2 rounds of BEP wouldn't knock it out. At any rate, you should contact Dr. Einhorn who will guide your treatment, even if you don't go to Indiana University.

[David1969]

I hope to speak to my oncologist on Monday, he was not very positive last tiem we spoke, giving me a 50% cance of survival, spoke to my urologist today who was more positive.

[David1969]

Does anybody have contact detials for Dr. Einhorn? Thanks

[danebert]

Dr. Einhorn has acheived greater results than that. Overall his salvage rate with HD is near 66%. ( for all groups including those with refractory disease, who's markers increased while on active treatment) .You also have a better prognosis because of your initial stage. You should probably send the pathology slides out to Dr. Ulbright at IU for a second opinion. You may only have teratoma. Did you have any new markers drawn ? That would be a good indication of whether the nodes contain teratoma or active cancer. Dr Einhorns contact number is 317-274-7929 and you will talk to his nurse Brames, Jackie. If you want, I can e-mail Dr. Einhorns newest study regarding High Dose to you.

[David1969]

Thanks for the help.

I did have new markers drawn and they were "good" AFP was 2.0. My oncologist was hoping it was Teratoma, but since the urologist has called and said they have found cancerous cells and I need further chemo I assume this is not the case.

[danebert]

I would still get a second opinion on the pathology, but that is a good sign that your markers are normal. Einhorn would probably recommend a second opinon since your markers are normal before starting any more chemotherapy

[Scott]

I like danebert's advice -- to make sure you're getting the best available expert advice -- better than mine.

(In related news, there is some discussion about recent publicity for high-dose chemotherapy in this thread.)

[David1969]

I will try and get in contact with Dr. Einhorn on Monday. I do have an appointment for a second opinion with a Dr. Hayes at Dana Farber, but not for 3 weeks and I really want to get going now. I am sorry to say I do not have a lot of confidence in my current oncologist and he is so negative.

If I have another round of cheme, do oyu know roughtly how many weeks the protocol is likely to last for?

[Fed]

Hey David,

I'm really sorry to have heard about the recurrence, but I am glad to hear that you are being proactive and are trying to get things moved much quicker. Did they say what exactly was found in the biopsy? If it is teratoma, then it is unlikely chemo would be effective, hence the importance of getting these results.

You should definitely contact Einhorn, and, if possible, try to get an earlier appointment at DFCI. Julia Hayes is one of the new docs at the GU clinic, so I don't know much about her. Since this is something that you need to take care of promptly, you might want to insist on seeing someone earlier. I'll dig out some stuff and PM you some info.

[David1969]

Fed,

Thanks for the help. I don't know the details of what was found in the biopsy yet as I was driving home when I got the call. They were hoping to find teratoma, however, since the urologist has described finding "more cancer cells" and because he feels I need more chemo and not another operation I have assumed it is not teratoma which has been found.

[Fed]

Gotcha. I sent you a PM with some pointers. I'm sure you will know by Monday exactly what was found -you'll certainly need that data. Let me know if there are any other ways I can help.

[David1969]

I have just communicated with one of the experts at Dana Farbar and they are suggesting, subject to the path results, 4 rounds of either VIP or TIP Salavage chemo. Does anybody knw if this can be given on an outpatient basis or is it usually an inpatient regimen?

[Fed]

I'm glad you were able to get the advice you needed. I don't know whether VIP or TIP are given inpatient, but others here have done that protocol so they should be able to chime in.