mixed news on choriocarcinoma?

[ccole415]

I was diagnosed around Christmas with choriocarcinoma stage 3c. I am currently a patient at wilmont cancer institute in rochester N.Y. which is at a pretty well recognised hospital the university of Rochester. My doctors seem confident that this is a very treatable kind of cancer and think my body is responding well. It has metastasized to my abdomen lungs and brain but they still estimate me at a 60 percent chance of full recovery. I underwent stereoscopic brain surgery (acute radiation) for the legions that were large and bleeding. I recently had another head mri and it showed 5 more microscopic legions that were not exactly a threat yet but full brain radiation was suggested now. However the docs did say the previous 2 spots look better and are stable. The new legions made me do more research and I came across this site that seems to go against everything my docs are saying. I know you can't believe everything on the internet but how do you figure out who's credible and who's not?

Your friend

Cory

[Daniel335]

Hey Cory sorry to welcome you here.

I'm not sure exactly what the treatment your doctors are wanting to do is since it's not mentioned in your post. What type of chemo youre doing etc. choriocarcinoma Is a bit more aggressive than other cell types in the field of testicular cancer.

Since your case is a bit advanced I would make sure that your doctors are consulting with Dr. Einhorn if they aren't already. He is thee go to guy worldwide for testicular cancer. If they aren't you can email him at [email protected] he will usually respond within the same day. Just explain your situation and see what his recommendations are.

One last thing Cody, DO NOT FORGET that testicular cancer is highly curable even at advanced stages. We have some guys here that have beaten it even at an advanced stage. So remain positive and ready to fight this thing!

[ccole415]

I'm sorry I'm not too medical savvy and don't understand much of the medical terms. There was only small nodules in my left testicle. A lymphatic tumor in my lower left abdomen. Small nodules in both lungs and 2 large legions on my brain that were bleeding but are under control now with 5 possible new microscopic legions.

Treatment includes:

-Stereoscopic radiation surgery 4 treatments on the 2 bleeding legions. On a repeat scan bleeding is under control and legions look better.
- chemotherapy VIP treatment including cisplatin, etoposide, ifosfamide, and mesna. 4 cycles in 3 week intervals. I just finished my second cycle.
- left testicle is due to be removed.
- possible full brain radiation on microscopic legions.

I'm confused because what I read about choriocarcinoma says it's usually fatal and doesn't respond to anti cancer drugs. My doctors seem to believe my type of cancer responds well to anti cancer drugs. Maybe I am just over thinking because one of my numbers went down drastically. I don't know the scientific term my doctor called it a tumor markers but I believe it is something the tumors secreat into your blood. But he said the tumor marker level went from over 400,000 to 12,000. I believe hcg I may be wrong. So it seems I am responding.

[jjjw2835]

I also did VIP as my first line of treatment for chorio. I second that you should contact Dr. Einhorn. Chorio does respond but is very aggressive and needs to be watched closely. If you have any questions please ask.

[Daniel335]

Although choriocarcinoma is aggressive, it is responsive to chemotherapy. That's fact. What you might be reading about is something called teratoma. That is not responsive to chemotherapy and is only dealt with by using surgery. Teratoma is not cancer rather misplaced cells. The danger with that is that it can transform into different types of cancer sometimes if left untreated. But choriocarcinoma IS responsive to chemo. They wouldn't start you on VIP just for the heck of it. If you have any other questions post them on here or feel free to message me man.

Yes, you're right. They use those tummor markers to measure if the chemotherapy is working. A drop from 400,000 to 12,000 is HUGE. And an indication that the chemo is killing cancer cells. The tumor markers used are referred to as HCG, AFP, and LDH. The main ones they look at are the HCG and AFP. Seeing a drop in either one of those is great news.

[ccole415]

I emailed Dr Einhorn and gave him a little background and the treatment I am going through. Any input he has would be great. I try to stay strong for my family as they are so supportive and always there. But I'm actually so scared and I hold it inside. I'm 26 years old been with the same girl over a year and all I want is to have a family. I'm at that age where I just want to have a baby and I'm scared I'll never have that chance. Cancer changes your views and goals in life.

[Daniel335]

He will definitely reply. That's how I was. But it's important to let your loved ones know how you feel too. I can assure you that they wanna help you any way they can as you probably already know. You still might get that chance! Just try to bank sperm once you finish chemo if you haven't already! I can't have kids anymore because of the RPLND. I'm only 20 so I don't want kids yet anyways. But I always planned on adopting anyway. Cancer definitely does change things. But like I told you man, the good thing about testicular cancer is that it's very curable no matter what stage. One thing I learned going through everything is that if you have negative thoughts, they'll consume you. That's why you gotta stay positive, although hard at times. But look at that drop you have in your tumor markers! That's definitely something to be happy about 😊

[ccole415]

Damn bro and I thought i was young. Well I hope you continue to be cancer free but from what I read recurrence is common with TC. It's just so hard for me I was very active and hard working working 60 + hours. My job is very very physically demanding so I can't work while going through treatment and it's left me very depressed feeling like I'm a bum living off my family. They want to have a benefit fund raiser for me but my pride keeps saying no but the bills do pile up my insurance policy isnt the best I feel like it's just a big pity party.

[Davepet]

Now is not the time for pride. You get to be proud once you beat this. Every bit of help eases your load & lets you focus on beating your disease. That is the only thing that is important right now. Accept whatever help is offered gratefully, knowing you will have an opportunity to help someone else in the future, once you/ve beaten it.

Dave

[ccole415]

Thank you Dave. I've been trying to open up it's just very hard for me but I'm getting there. I appreciate all the help I have received on these forums and will stay to help once I survive it really is amazing how much it helps. I traded e mails with Dr Einhorn and he thinks I should skip the 4th round of VIP (only currently completed 2) I go back in for the 3rd on the 16th and go straight to high dose chemo. I'm not familiar with what that is are the side effects more intense? Because I really havnt experienced many with the VIP just some extreme bloating retaining fluid, my insides sometimes hurt all over my abdomen, headaches, and constipation. Also how much discomfort is it to remove the testicle?

[Daniel335]

I'm not too familiar with the high dose chemotherapy myself. I do know that it often involves stem cell transplant in addition to the chemo I believe. Perhaps others can chime in on that. My guess is that Dr. Einhorn believes you should hit this cancer as hard as possible ASAP. On the removal of the testicle, it's not so bad. Definitely some soreness in the groin areas for a good week. I remember by the second week I was walking fairly well with only minimal discomfort.

[Smartie]

The high dose chemo involves, as you'd expect, very high doses of chemotherapy. Rather than cisplatin, the main ingredient is carboplatin, I think. The chemo wipes out the bone marrow, so they harvest your bone marrow before the chemo starts and transfuse it back into you afterwards.

It is quite a rigorous treatment. I would suggest searching the forum to understand other people's experiences of the treatment.

Dr E is the man. I'd definitely follow his advice.

[ccole415]

That sounds quite unpleasant... but I guess all the treatment is. Going to see the neurologists this Tuesday to plan a course of action for my head. Wednesday is a spinal mri to make sure it's still clear. My brain scares me mostly. The rest of the body I feel like I can beat. Thanks for the support gentleman

[Smartie]

How did things go yesterday?

[jdognite]

Mr ccole415,

Just wanted to give some words of encouragement. I'm nearing my 10th anniversary of surviving stage IIIC pure chorio. I was 25 when I was diagnosed and was given a poor prognosis. Dr Einhorn can work miracles though. Best wishes to you and yours.

- Josh