Stage III - Questions

[Trisha]

So now I am scared. We just got CT results back and his lymph nodes in his lower back and chest are involved. He has two small things in his lungs. The dr is calling him Stage III at this point. As I read the NCCN stuff I see the word that the dr referred to as where his node was Mediastinal has poor risk... I AM REALLY SCARED....Is that what he has ... if the dr said the ones in his chest and he called it the mediastinal.... that means a poor prognosis.
Please help me understand. The lymph nodes in his lower back where larger than the mediastinal area ones.

His HCG has not gone down and it has a half life of 24 hours. He has recommended a treatment of 4BEP. I didn't even know they did 4BEP because I never read past Stage II. I am also worried because the studies I have read indicate people with renal issues are at high risk of BPT - a major cause of death for the small percentage affected by it.
Another question - We are getting a second opinion from one of the Drs that works on the team with an "expert". Is that good enough? The lead expert wasn't available til February and we clearly cannot wait.
How sick will we get with 4BEP. I imagine we are in for a long 3-4 months. Any advice on how to prepare for chemo?



10/20/2006 left I/0 Nonseminoma (embryonal, seminoma, choriocarcinoma), VI & LI, Chest & Back Lymph Nodes + 2 small ones in Lungs

[dadmo]

Trisha:
The number not droping is an indication that the swelling in the lymph nodes is live cancer, I would have assumed that anyway. 4BEP while not standard is done and some on this forum have been down that road. I wouldn't put off the start of treatment but I would certainly want an expert to follow the progress. Have you sent a fax to Dr. Einhorn? he's very responsive.

[Karen]

Tricia,
Sorry this is more advanced than expected, but do not give up hope. Waiting until stage Feb to see an expert (can you share which one?) or seeing the pinch hitter sooner is not acceptable. Where do you live? I'd call Einhorn or Sheinfeld's team. Have all the reports and labs ready to FAX over to them. Especially given your husband's kidney problems you want the very very best.

[Trisha]

Thanks Karen - so i can just fax all my records to Dr. Einhorn's opinion and he will review our case.

[Lori]

Trisha, it is going to be okay. My husband had a different mix of cancer types than yours, but he had tumors in his stomach, mediastinum and neck. We went to Dr. Einhorn half way through our 3xEP treatment and ended up basically moving to Indiana for 8 weeks for chemo treatments. Then he had surgery with Dr. Kessler on his chest. Jon had a lot of Teratoma in his original pathology which doesn't shrink with chemo - so the need for surgery. Dr. Einhorn has seen it all and although he called my husband's case one of the most challenging he has seen, we knew we were in good hands out there. If your partner needs surgery on the mediastinum - which is a big IF as the chemo may very well shrink the tumors - then Dr. Kessler is the best! Please private message me if you have any questions, but please go to Indiana or Sloan for a second opinion.

[dadmo]

Dr. Einhorn has been the quickest to respond to faxed items. I went to Slaon with my son and had a great experiance, I called Dr. Motzer's office at 6:30am and got directly to him and he put my son in for a meeting the next week. Make sure you explain the kidney problem, that should put you a bit higher on the priority list.

[dadmo]

We live less then a hour from Sloan and our place is available if needed.

[ivannabanana]

Stage III

Hi Trisha

My hubby also diagnosed stage III and he is almost completed hys 4xBEP, he only 2 more chemo injedtion at out patient clinic thys Friday 10 Nov and also the following friday....My hubby, George has large tumour in hys abdomen and also he has in hys space between hys lung also.... We are told he is Seminoma....I know is hard to not worry, becos believe me if you read back on my posts you will see im absolutely scared stiff., but have faith.... Thys is a great forum and you'll find great comfort from all the guys and gals... My hubby compared to som of the guys has done well on hys chemo and im so proud of hym....Hys first cycle was the worst becos he caught an infection and landed in ICU but recovered quickly from that and after that each cycle was as i say fairly ok... Mostly tired,mouth ulcers and hair loss.... If i had one piece of advice for anyone it would be to DOUBLE check all medicines that your hubby is to have when he come out of hospital on hys rest periods... When my hubby landed wyth infection on hys first cycle he should have been gyven antibiotic and Allopurinol which is a tablet that helps flush out thekidney...When the tumour is being killed off and the kidney is trying to expell it from the body it needs an extra hand so Allopurinol is gyven but in hys case it wasnt so he ended up wyth kidney infection and landed in ICU... So now i check all hys MEdication..... Stage III sounds very scary but if you read some of the posts on thys forum i thynk you will find it helps you... it did for me.... Hope thyngs go well for hym on hys treatment, bless Yvonne... (Im in Scotland so our Health systems bit different from USA)

[Trisha]

thank you all. we have an appt with a dr that works for Dr. Kantoff in Boston who is an expert. I will take your advice and gather all the info and fax to einhorn. I will also call to see if i can get with Kantoff rather than one of the Drs that works for him which is who we are scheduled to see. We are in Boston and only a few hours from Sloan if we need antoher opinion outside of Einhorn. I will call and get a copy of the radiology report to fax. I really didn't expect it to be this bad.

[Lori]

Trisha, we also met with Sloan and are obviously as great as Indiana. You'll be in good hands at either.

[Dave40306]

Trisha,

I'm sorry to hear about your husband's situation but like others have already said, with the right, aggressive treatment, he will be fine.

My advice to you is to get on the phone with Sloan RIGHT NOW. They are very accommodating and once you explain your situation, they will probably get you in within 24-48 hours. You need to see the experts there. I don't know much about the experts in Boston, but Sloan and I.U. have the absolute best doctors when it comes to TC.

[mrb1980]

Trisha:

I feel pretty qualified to respond since I've been down this road. First, a mediastinal tumor means poor prognosis only if it's PRIMARY, rather than secondary (having originated in a testicle). I had left I/O, a CT scan showed that my retroperitoneal lymph nodes were clear. However, my tumor markers refused to drop. A CT scan of my chest showed mediastinal spread.

Scared? You bet I was scared! However, 4xBEP cleared up the cancer, and I have now been cancer-free for over a year. In fact, my markers were in the normal range after three rounds of BEP, but my oncologist insisted that I go through the fourth. 4xBEP is no picnic, but I was cured and I now feel great.

This is beatable. I did it. I feel as though you and your husband will too.

[Trisha]

Hi everyone,
We got the 2nd & 3rd Opinion - thank you everyone!!! I feel so much better that we are in the right hands. We start the 4xBEP on Monday and there is some piece of mind knowing that this will soon be behind us (not soon enough though)! Sloan told us that we should begin the 4xBEP right away and we will get to NY in person to discuss further at that time. They told us the real difference after the chemo is the followup (not sure exactly but we will do as they say)!

Dadmo - thank you for the offer to stay in NY - we have family in NY but your offer was sooo generous : ) Lori, Karen, ivannabanana, Dave thank you for the support and advice - glad to hear you all seem to be well on your way. And glad I took everyone's advice to get to another expert at Sloan.
mrb1980 i was so glad when you cleared up the poor issue -- whew!!!

So a few quick questions.
1) how soon do you lose your hair?
2) any good tips on what to buy before chemo starts to have on hand?
3) how about the kids - ours are 9 & 11 and we have been talking about it just wondering if anyone has any tips

THANK YOU!!

[Karen]

Hi Trisha,
So glad you went to Slaon and have a path forward. Can't tell you much on the hair and chemo...but there has been great advice from the guys on other threads and I'm sure they'll chime in now.
On the kid front I can say I haven't dealt with it but have been rehearsing. I have a duaghter who will be 10 next week. Once Ray was diagnosed I started fitting cancer into regular conversations. Unfortunately I know enough friends with CA there's not been a shortage of opportunities. I told her that some cancers, like Grandpa's lung cancer, can't be cured YET. BUT there are a lot of cancers that can be cured but you need really strong drugs to do that. I explained the hair loss, sickness etc. She even grew out her hair and donated 12" of it to Locks of Love to help kids with Cancer. I would be straight with her if that time came. When my 5 year old sister had leukemia I was 9, and everyone wanted to shield me and NEVER spoke of it. Big mistake because I overhead enough and was smart enough to figure out what was going on. The fear was overwhelming and those scars stayed with me. Tell them what he has, mention Lance and others that thrive after CA, and let them help in the fight. It will be hard for them but as long as they can come to you with their fears and you are strong they will come out stronger. We all do. Good luck Trishia. Sorry to ramble but the kid thing is always in the back of my mind. They have hit an age where they can grasp this to some degree and they will be more afraid seeing him sick and bald if they don't know what's coming. Take care!!

[mrb1980]

Trisha,

I know that starting 4xBEP chemo is not necessarily a "relief", but you and your husband have a goal and you can see the end of treatment. As for your questions:

1--My hair fell out after round one. I think that's pretty typical. It's best just to shave your husband's head--a lot less messy that way.

2--Based on my 4xBEP chemo experience, I have a few suggestions.

--Acetamenophen (tylenol). This will help ease any flaming fevers caused by bleomycin.
--Stool softeners. I needed these during chemo for the first time in my life. I was 48 at the time!
--Bland foods. BEP chemo tends to give patients a metallic taste. I lived on rice pudding for a few months. Sports drinks (e.g., Gatorade) are another good choice. Try not to give your husband any of his favorite foods. I'll never eat fajitas again!

I'm sure folks will have other very useful tips.

3--Tell your kids right away. I didn't tell my 14-year-old daughter until my hair fell out, and she gave me the tongue-lashing of my life. You should be up front about it.

Once again, Stage III TC is serious but is curable, and I'm proof. The chemo takes a long time and can be brutal, but hang in there.