Hello everyone,question

[Derek12]

Hello everyone,im writing this in regards to one of my best friends who was diagnosed in September with TC.He was diagnosed with stage 3 TC which had metaphasized to his liver and he has several "superficial" spots on his lungs as well.There is also a tumor in his abdomen,which appears to have been spread via his lymph nodes.He has undergone 4 cycles of B.E.P.,and his tumors have significantly shrunk from the chemo and his blood levels had been significantly dropping,until his last test.I know in his first tests,the level was close to 300,000 (HCG) i think,and it dropped as low as 30,000.According to his last test,the levels went back up to 70,000.He already had surgury to remove his right testicle,and now i understand he is going to have to have the lump in his abdomen removed because the doctors believe the cancer is being manufactured from this tumor.Also they switched his chemo,and he has undergone one cycle of Ifosfamide,and another drug which im not sure of,but he said it was called Paxil or something very similar to that name(i know the antidepressant paxil).Also they want to implant another catheder into his arm to harvest stem cells,to replace his dying cells with.It seems to me(i AM NOT a doctor),that its really bad to deviate from the original chemo they were giving him,in particular Cisplatin because ive read that its the "magic bullet" for TC.Basically im wondering if anyone else has had this happen to them,and im trying to decide if he is worst case,and maybe needs to leave Yale and talk to people at Indiana University.could the doctors have missed something?I know he had a bone scan which was good,and his lung volume tests are improving.I read in Lance Armstrong's,"Its not about the bike" that sometimes very high HCG markers are the tell tale sign that it has reached the brain.If anyone could respond id really appreciate it,from the limited info i gave here.I am unbelievably stressed out because he is only 19.Thanks everyone,and good luck fighting this horrible disease.
p.s. i know he has germ cell non seminoma,but i dont know the exact percentages of the make up of it...thanks again
-Derek

[amorgan74]

Experts

I think it would be a very wise move to consult with IU. They have been lifesavers for many people on this site and when the cancer is this involved I would want the best for my friend or loved one. Sorry to hear about this. April

[Scott]

Derek, I'm very sorry to hear about your friend. I agree with your idea to seek expert advice from IU Cancer Center.

[Derek12]

wow,thanks for replying so quickly everyone.i really wish i could say i was expecting this,but to be totally honest,i wasnt.i guess i posted this expecting someone to say"dont worry,it happened to me during my chemo,its not that unusual for the numbers to rise and fall and rise again".another problem with my friend scott is his attitude about this whole thing,which is basically "they are the doctors,ill trust them and just hope for the best".if this was me,id be asking a whole lot more questions then he does.how should i tell him he needs to get a second opinion,without making it look like im trying to play doctor?im really just concerned as hell for him,and want him to get the best treatment possible.also,i know he takes marinol for nausea,which doesnt really work that well for him.he asked his doctor about smoking marijuana for nausea,and the doctor told him it would be fine for him to smoke a joint or 2 a day,and he has been.its has really helped with the nausea,and he is eating enormous amounts of food,and he has even gained 12 pounds since starting.has anyone else had success with it?is this doctor crazy for telling him he can?i appreciate everything so much,i just am striving for knowledge,cause knowledge is power,and i dont think i could know enough about this.Thanks again
-Derek

[Scott]

Be sure to read this whole TCRC page about why an expert opinion can be so important. Your friend may be in good hands, but a stage III case that wasn't cured by initial treatment calls for the best help available.

[dadmo]

Derek12:
Don’t despair, your friend may have a harder road to travel then most but a cure is still a very realistic possibility. There are many on this forum who have had to take the same path as your friend and they are here today and doing fine. Stay positive, stay informed, stay proactive and yes contact the experts at either Indiana or Sloan Kettering. More the likely then not your friend will still be able to beat his cancer.

[Don]

Derek12
Your freinds case sound similar to mine. with spread to the abdomin and beyond, High blood markers etc... I was diagnosed with stage IIIC.The new Chemo he is now taking is more than likely TAXOL( Clinical name (PACITAXOL) combined with Ifosimide and cisplatin or better known as TIP chemo regimen which is usually used as Salvage Chemo-Therapy after the initial BEP chemo. my blood markers pre bep chemo were AFP= 48,593-HCG 314,000 After 3 round of BEP my levels were at AFP=3200 HCG=19600-- I was slated to have a high risk RPLND surgery with elevated markers because the Dr,s did not feel my levels would come down. With-in the 4 weeks I waited for surgery my marker went back up to AFP=22500 HCG=180000. I then began TIP chemo which brough my markers down to AFP=2500 HCG=14000..... At this piont my local Dr. and surgeons said there was nothing more they could do for me. Had I listened to them I would not be here today!!!!! I was transferred to Moffitt Cancer Clinic in Tampa,FL. After Moffitt evaluated me they discovered the elevated markers were being caused by the abdominal tumor. Luckily the salvage chemo(TIP)eliminated all the other area that the cancer had metastisized to but the blood markers would not normalize dur to the tumor in the abdomin. Once the Rplnd surgery was done,removing the 8.5 lb tumor,kidney and some lymph nodes my blood markers decreased significantly by the day--down to AFP=432 HCG= 2000 just one week after surgery. It took another 3 months for my blood markers to normalize after the surgery-but they did.Taxol is a very powerful,high dose chemo and should work well. I personally have never heard of it being used without Cisplatin(maybe Cisplatin is being used without your knowledge). with Taxol and Ifosimide they usually administer another drug called Mesna daily. Mesna is given to take away very painful urination take Taxol will cause. High HCG is not always a sign of spread to the brain.. I thought I was in good hands with my original doctor but later found that if I would have went to an expert from the beginning I would have been cured much quick and the cancer would not have spread as far as it did.. If I would have stayed with my original DR's I WOULD BE DEAD!!!!!!!! Have you freind go to or consult with IU,SLoan or any of the other National Comprehensive Cancer Institutes in the US. I wish your freind nothing but the best!!!!!!! DON

[Don]

I feel left out--Had I known that smoking pot would have remedied the nausaau I would have had my Dr. prescibe it ......

[Derek12]

wow thanks you everyone so much,your stories sound very similar to what he has.actually the wierdest thing happened.very unexpectedly,my friend announced that he already has an appointment at sloan tomorrow,so i just copied down specific doctors names from the link scott posted and gave them to him.when i first found out he was diagnosed,i told him how sloan saved my uncles life when he had cancer of the throat and larynx,and he remembered(which surprised me,cause of a previous head trauma in a car crash).so i guess when i told him it stuck,and he actually made the appointment himself.ill keep everyone posted,i have a hunch its that abdominal mass he has.thanks again,
p.s. like i said,agree with it or not the weed has really helped his nausea...much better then the prescrition marinol which is synthetic thc
-Derek