*urgent Advice Needed Everyone Read*

[tccancercop]

Ok, so i can't get into indiania university due to insuranc issues and cannot get into Cincinatti until June 8th for a transplant.

Cleveland Clinic says the RECOMMEND that TIP chemo is the way to go at first to see how I respond to it and may have surgery to remove anything that be in my body. He says Indiana never does TIP just goes directly into transplant. He says Memorial Sloan always does TIP after a reccurence and then a transplant IF needed.

Next week I will do at least one cycle of VIP or my oncologist said I can do TIP if its my choice.

QUESTION since half of doctors say go to transplant and others like memorial and cleveland clinic say that salvage chemo is the first step, then do the transplant if needed. He says there is NO findings that doing the transplant first (earlier) will have a better success rate than doing it later.

SHOULD I DO TIP OR VIP AND HOW MANY CYCLES? ANYONE HAVE A DIRECT NUMBER TO A DOCTOR AT SLOAN SO I CAN ASK OR HAVE SLOANS REGIEM??

I WANT TO GET CURED. MY afp during EP chemo response was good it went to 5.0 However a month later it started climbing. I NEED HELP. My email address is [email protected] or if someone wants to call me let me know!!!!!!!!!!!!!!!!!!! Tuesday is when I go to my oncologist to be prepared for the at least one cycle of VIP

[Dave40306]

Just some advice regarding Sloan... You'll probably want your current Oncologist to contact them for a consult, rather than you doing it yourself. I'm sure they'll be helpful enough if you call but they're probably going to want a ton of info from your doctor so they can review your case thoroughly before giving any advice.

Your doctor will have a number for them.

I wish you well and I'm sure that you'll come out of this just fine.

Dave

PS - I just went through a lot of your posts and I've got to say that I'm looking forward to getting the RPLND after chemo if there's any question at all that there may still be something there. Hang in there, man.

[justinsmom]

ok so I am sorry I have no advice for you....I'm just a mom of a TC survivor..BUT I am a praying mom and will keep your situation in prayer and especially for your peace of mind, I went through alot of anxiety and fear with my son's situation. ( we went against his oncologist's recommendation for a surgeon for his 2nd surgery and went elsewhere, but God led us elsewhere and even though Justin has problems unrelated to the cancer but related to the surgery i am at peace because it was put in God's hands) and I can see in your situation not knowing what way to go would increase on your stress...and you don't need that on top of what you are already experiencing...so I will definitely pray that someone here can lend you advice about which treatment to take and then you need to trust the Dr. and the good Lord above...put it in His hands and trust Him (or you will forever have regrets.."woulda, shoulda, coulda" ) God Bless-Lanette

[Scott]

Ok, so i can't get into indiania university due to insuranc issues...

Have you talked to IU about the situation and what they recommend? Can you appeal quickly with your insurance provider?

[danebert]

First things first. Calm Down! I know its hard but try. Its amazing how many times I’ve had myself worked up and can't thing straight
Dr. Einhorn proceeds directly to High Dose chemo because that’s where his experience is. He has been doing transplants for years and years and has had some impressive results. In a case like yours the CR rate is near 70% ( specifically, Those who have had a testicular primary vs. mediastinal primary and a complete remission to standard BEP chemo) I think you fall into this category. However, the guys over at memorial Sloan have done studies with guys who have favorable disease. That is, men ( similar to you) with the same disease characteristics as those who had a 70% cure rate. It the studies from Sloan, they used TIP chemotherapy ( 4 cycles ) for the good risk guys as salvage.
Sometimes the two modalities are combined. That is, first they will give you 2 rounds of Taxol and Ifosfomide then two rounds of high dose using Carboplatin and Etoposide. Einhorn sometimes uses 2 rounds of VIP before high dose to test your sensitivity to Platinum then uses high dose Carboplatin and Etoposide.
Bottom line. You have such a good chance of cure that you may only need the 4 X TIP chemo. Its also good to have the BMT with high dose chemo as a third line treatment. Studies have shown a slightly higher response rates with High Dose chemo in the second line setting vs. third line setting but those studies included those with all prognostic features ( High markers, brain mets. bone mets. and those who were refractory). If I’m not mistaken MSKCC uses TIP for good risk and TICE ( Taxol, Ifosimide, Carboplatin, Etoposide) foe poor risk relapsed disease.
One last note. It’s your choice so if you have any doubt about you Doctors. opinion then get a second one. Cleavland Clinic is good but not the best. Also they guys from Sloan are kind of stuck up. Its harder than hell to get in touch with the doctors without setting up an appointment. The secretary plays blocker. Ask DADMO, I think he might know another number other than the one posted or maybe able to help you somehow.
I don’t know if this bring you any relief but Dr. Einhorn said the most curable solid tumor is testicular cancer, the second most curable metastatic solid tumor, relapsed testicular cancer.


Any questions, feel free to e-mail me [email protected] or post here again.

[emetic]

I've only ever read great things on this board about IU consulting and helping direct treatment. Insurance be damned they seem to be well worth a call.

I'm not familiar with the American medical system but I can't conceive it costing too much to get a telephone consult and a look at your file. Then again maybe I'm just uninformed.

[indiana9]

Here is a link to testicular cancer experts around the world, including those at the IU Medical Center. Good luck!

http://tcrc.acor.org/experts.html

[Don]

Generally the protocol for TIP is 3 rounds not 4.. The treatment is for 6 days then 21 days off and so on.. Vip is used for low risk salvage(if there is such a thing)and Tip is used for high risk cases. I had 3 round starting in Jan 05 to march 05.. I was told by my doctors at Moffitt(after they consulted with Doctors at IU and Sloan to have the salvage chemo first and then use the Transplant as a last course of action. I can tell you that usually VIP and TIP are normally foolowed by some sort of surgery to remove teratoma unless the reoccurence is caught early.. You can click on the link in my signature a contact Moffitt yourself to find out more about TIP chemo if you wish.. They have an email line to ask questions also which is usually answered in 24 hours.... Take Care!!!!

[danebert]

THe guys at sloan ( and most other clinics) use 4 TIP for good risk salvage and TICE ( taxol, ifosimide, carboplatin, etoposide) high dose for poor risk. I am not aware of any protocol using only 3 TIP. Attached is the study from MSKCC including only the good risk relapse group. VIP is used to test out sensitivity to Platinum agents. Generally a clinic will use either TIP or VIP for good risk salvage and a combo of both to treat poor risk. Studies have shown that early intensification of treatment yeilds better results. IE High dose as second line therapy.


Both studies are attached for refrence.

[tccancercop]

thanks for the replies! I will start probably VIP this week as I'm having tingling in my toes/fingers which is not good considering the spot on the spine. I will request to have 2-3 cycles of it. I've been reading and the outcomes for each salvage chemo and stem cell transplant and the end results are poor. During initial chemo my AFP went to 5. A month after the completion it went up to 22.

So, I may do the chemo and if my AFP drops, see about possibly having surgery to remove the tumor on my spine, with a good outcome. OR, if my AFP continues to rise during chemo then stem cell transplant. The salvage chemo/surgery seems to be my best bet to sqeeze a couple more months out of life. The stem cell transplant from the studies I read only yield approx 10-15% total cure. My current situation I would say maybe 20% tops I will be completely cured.

Here is a question: How do you deal with a family who will not accept that I told them I will be gone in a few months? THey think everything is going to be fine. During Initial chemo I even said that things weren't going to work. Sometimes you just KNOW without knowing why!!

[Eric]

TCCANCERCOP

Don't let the bad thinking taking control of you. If you start a new chemo protocol you have to believe in it. If you don't believe in your chance it won't help you to make it. Positive thinking is the beginning, chemo will do the rest. I have read a nice book about management of thinking and it helped me a lot to get rid of my relapse. If you want i can send you something by e-mail that has worked for me and surprised me a lot.

[Scott]

Your family is probably just as worried as you are. Whatever the odds are, there's no reason to believe you won't be on the winning side.

[dadmo]

tccancercop:
I can understand your frustration with your family. When my son was sick they would call his chemo (vitamins). Is Jason going for his vitamins today? It was hard to accept there denial but it is quite common, and quite forgivable. At this point in your treatment you may want to have one of your parents go on a doctors visit with you. Perhaps then they will understand what you are going through. There is still no reason to think you can't win but at least your family will better understand your feelings.

[danebert]

Where did you come up with your stats. Your chance of cure is alot higher than you think. If you think you are poor risk then Memorial SLoan Kettering has a trial for you ( possibly for free) using TICE chemotherapy. This results in up to a 50% cure rate in a very poor risk population. On the other hand if you are good risk, Regular high dose salvage results in cure of up to 70%. At the very least contact Sloan in New York, before starting VIP because if the trial sounds good you will have to be off chemo for three weeks before starting their high dose. Read the attachments in the above posts. ( TICE )

[Josh1982]

Why do you assume your not going to beat this? Who better a sixty year old guy. It doesn't matter if there's half a chance or one in five, there's still a chance. It sounds like it already beat you, but you let it....You seriously need to change your outlook, or what's the point of going through chemo at all. Goodluck man, and for sure your able to beat this. It's just as easy to assume you will beat this as it is to assume you wont. Sooo please don't give up on yourself.