Going to the Cleveland Clinic

[tccancercop]

Well I made an appointment at the Cleveland Clinic for a second opinion. I finished up chemo at the end of feburary and the embryonal carcinoma is back in full force (I know cuz i've been having discomfort in my Upper back right on the spine and now I have neuropathy in my feet). Cat scan was clear and AFP was 22 from 5 - - - bhcg <2. I'm 24 and have come to terms that is is terminal now but just want to see if there is anything else that can be done. I will not do any more chemo so that is off the table (since it didn't work).

Question is has anyone had any experience at the Cleveland Clinic? I know they have a few doctors who specialize in Testicular Cancer and related surgeries (including laproscopic/robotic which is one thing Cleveland Clinic is known for).

[Scott]

You haven't already been through second-line chemotherapy have you? Read the section on this TCRC page on salvage chemotherapy, and make sure you consult with a testicular cancer expert. Don't give up -- there's still hope.

[tccancercop]

No i haven't had any second line chemo, nor will I. Yeah one of the "experts" is a doctor at Cleveland.

[dadmo]

tccancercop:
I know how disappointing it is to not be cured in the first try but you really need to rethink your position on second line chemo. I’m not discounting how difficult your treatments may be but if you should decide against treatment at some point you will be far sicker from the disease then you would ever be from the treatment, and at that point there will be no return.

[Mom]

Do Not Give Up!!!!!!

[Scott]

No i haven't had any second line chemo, nor will I.

It's not more of the same drugs. Come on, stay with us.

[Derek12]

what a tough situation you are in,and I must say i can relate.ive never had cancer.my father,grandfather,grandmother and best friend all unfortunately passed away from it.My friend died 2 weeks ago from TC.He was a WORST case scenario from the start with alot of complications along the way.I am the same age as you,young if you ask me.It sounds as if u may be cisplatin refractory because your disease may have progressed less then 4 weeks after chemo.My friend was absolutely refractory,which means his disease progressed DURING chemo.A refractory patient stands a much better chance then an absolute case does.We went thru the same questions your asking yourself now.Is it worth the horrible side effects and feelings of chemo?Not being a religious person,and admitting that i do not know what lies on the other side,id have to admit to myself that there could be nothing after life.There is a 50% chance that THIS is all we have.We deicided that it was worth fighting for.HE had 2nd,third,and even a 4th treatment line done.And nothing worked as well as the second line chemo did for him.His HCG levels were 363,000 and salvage chemo brought his numbers down to 8,000.If your AFP is at 22,i could almost guarantee that it would destroy your cancer.BEP was much more caustic then salvage chemo was,and the high dose wasnt that bad.BEP was worse for him.Oxaliplatin as a thrid line treatment really was the worst.My advice is try the salvage chemo,it will probably work.If you get to the point where they tell you to do oxaliplatin,THEN start this process.Best of luck.

[Don]

You really need to sit and think about what you are saying!!!! When I was diagnosed I was given 6-8 months to live--after 3 rounds of bep and 3 surgeries my cancer doubled-- I started to go through kidney and organ failure due to the 8.5 tumor that was in my stomach... the doctors told my wife to have my family and parents come to see me ASAP because they didn't expect me to make it through the night... I had the opportunity of experiencing the mental and physical pain of near death... only 4 mg of morphine per hour is what kept me some what sane... That pain will be forever etched into my memory.. I would not wish it on my worse enemy..... Somehow the doctors saved me and pulled me throught the next few days.. at this piont I started Salvage chemo,TPN,Blood and plattlette transfusions ETC... the pain and illness of salvage Chemo is NOTHING compared to the pain of being on the brink of death.. You have the opportunity of being cured and your saying your not going to??? Many other patients wish they could have the chance of being cured but know they never will be.. They are the ones that have to face the fact that they will die soon ... NOT YOU.. There are still so many ways to cure you... Yes-- Salvage chemo sucks!!! When you look at it ,your talking about 3-4 months out of your life.... your 24--- you have your best years ahead of you.. Take every possible option that they give you to cure yourself... I hate to be blunt but it will take 10 times longer with 50 times more pain and suffering for this disease to kill you without treatment.... Getting treatment is going to be easier and less painful then not being treated....Your no go to anyone dead!!! It's a big step, it's hard,it can be depressing, its painful at times but it is a means to an end.. the fact that you thought you where cured and have to deal with this again really sucks.. YOU ALREADY BEAT this once and you will beat it again.. It sound like this was caught in the early stages .. Start now-- it will be over in a few months.. You are surrounded by over 1000 cases of living proof that you can beat this 100%...You have the support of each and everyone of us here....You have to get past the piont of feeling sorry for yourself and shift into survival mode!!!!!! I know of many people that have been treated at the Cleveland Clinic.. Each one is living a happy healthy life... Best of luck to you!!!

PS-- I'm not trying to be sarcastic-- I just don't want to see you throw your life away!!!!!!!

[Hopeful]

The Cleveland Clinic is a good place to go. You may also want to check out Indiana for an opinion too.

Also, if you do need high dose chemo/stem cell transplant, and I'm not saying you do until you get the results from your doctor visit, Indiana is a good place to go. Excellent nurse staff and they just redid the ward a few years ago. My husband went there last year for his treatment.

Best wishes with the doctor's visit.

[tccancercop]

Well, my local doctor called today. My latest AFP results is 52. My BHCG is still <2 which is well within normal limits. Quite strange. Dr. Klein is at the Cleveland Clinic is one of the "experts" listed on the expert page.

I also am sure that the cancer is now in my Upper back. . .in between my shoulder blades just in one spot near the spine. Perhaps a lymph node going crazy??? Nice thing about Cleveland is that they have several docs that specialize in Testicular Cancer and Laproscopic RPLND.

[dadmo]

When do you go to the Cleveland Clinic?

[tccancercop]

OH i Go Thursday the 18th.

[dadmo]

I know the 10 day wait will be tough but hang in there. Your situation may not be as desperate as you think.

[kollerjones]

My husband is currently being treated at the Cleveland Clinic. He underwent two high dose chemotherapy/stem cell transplants (Jan - Mar) and is now going back in for lung surgery. His cancer came back within 6 weeks of the first round. The treatment became more agressive (BEP) followed by an RPLND. He was then clear for a little over two years before it came back a third time. He is also cisplatin refractory.

I would check into asking the clinic to perhaps skip the BEP and go straight to the stem cell transplants. The results are much, much better (almost a 60% CURE rate) if done second time around as opposed to the third. Dr. Dean is the physician who managed my husband's treatments at the Cleveland Clinic so feel free to ask about the program. As a matter of fact, I would make a point of it as an advocate for your own being. The others are right in that the same drugs are not used in every type of chemo.

Because my husband went there for the stem cell, he did not work with Dr. Klein. We did a consult with another TC doctor but can't remember his name right now. The Taussing Center is pretty nice. My husband is getting admitted on the 25th for his surgery so perhaps we may even cross paths!

The stem cell business is serious but not at all the big deal I thought it was going to be. My husband did not really get all that sick or have any complications. The Clinic goes out of its way to make you and your family comfortable. If you have any specific questions about the clinic, we've been there enough that I know my way around pretty well.

I can only try and understand the weight of knowing you have a condition that MIGHT be terminal. The drugs used the first time may have simply not been strong enough. It does not mean other treatments will not work. Throw in the towel and it will be terminal. I'd hate to think you don't have the self-worth to find out.

Depression commonly follows cancer. Please ask your family doctor for some help in that area. Anti-depressants have done wonders for my husband and his appreciation for the time he does have.

[Hopeful]

Kollerjones,

YOu may also want to check out Cyberknife. My husband had that done on a 5 inch tumor in his right lung. They use a direct beam of radiation at the tumor and not hitting any healthy skin. It killed the tumor and it remained a dead mass. Our insurance paid for everything too.

Patti