Husband just diagnosed - need some help

[Karen]

Tricia,
Welcome! This is a really scarey time for you right now, but you've come to the right place. Dadmo gave you a great site to read up. Keep copies of all reports, ask questions of the docs and be persistant for answers. There are a number of expers listed on the tcrc site as well and a consultation is never a bad idea to make sure you're on the right track. The CT scan and follow up labs will give a better idea of what your options will be. This is a highly treatable/cureable disease. He will be fine...and so will you . Kepp us posted as you learn more or have questions. The guys on this site are fantastic and us wives, moms and girlfriends are all here for you.

[Karen]

Oops, our posts crossed in the ether!!!! Glad you 're getting an expert opinion!

[Mom]

I am too!!! You are your husband's best advocate. Dianne

[ivannabanana]

Hi Trisha and welcome, im afraid im not good at givin advice but just wanted to say that glad you found thys forum they really are great on here... My hubby in hospital just now just started on hys 4th and last round of BEP... So far doctors are pleased with hym... he has date for hys CT scan also which is 21st November... so not long to go...My hubby keep losing weight that hym lost another 2kg he down to 69.8kg now since starting chemo on 29 augst he lost about 7kg... Im worried becos he been one of the lucky ones he not been sick so i dont know why he losing the weight... Is it just the chemo? Hope everyone doing ok,bless yvonne

[Chris'Mom]

Trisha, my son needed four rounds of chemo and RPLND surgery, but is now healthy and living his life at college.....keep us posted, ask lots of questions, and all will turn out ok.....my son was treated at Sloan kettering in NY...Dr. Sheinfeld...make sure you have an expert in the field....locally, no Dr. could really help us....take care...Mary Ellen

[Trisha]

chemo

If they have to do chemo how bad is it? I know people react differently to it but on the whole do people work during that 9-12 weeks or just stay home because of it?
You have all been so wonderful I cannot thank you all for your kind thoughts and good advice

[Hopeful]

Everyone reacts differently to chemo. My husband went through 4 rounds of BEP for two tiny, tiny tumors in his lungs. His major side effect was coughing, exhaustion and mouth sores. But other people have have very minimal side effects. the only advice I have , if he has to go through chemo, is to stay on top of the drugs they give you and if you notice anything minor, tell the doctor. They have great drugs to help with side effects.

Like Dadmo said, TC has a very amazing cure rate. so hang in there. And if you need anything, just holler. That's what we're here for.

Patti

[Mom]

Interestingly enough, one of our employees is 8 weeks pregnant. She was so nauseous and was vomiting so much that she lost five pounds in three days and became dehydrated to the point that she had to be hospitalized with an IV for 24 hours. She came in to work and I asked how she was doing. She said her doctor gave her some great stuff. It was Zofran, the same drug my son took and most of the guys on this forum have taken while under chemo. I guess you can equate morning sickness to going through chemo. Not fun, but a baby and a cure are worth it. Hang in there. Dianne

[Trisha]

thanks guys - I appreciate all the kind thoughts.

Scott - I saw an old post of yours that said:
".. based on this information from Doug Bank of the TCRC: "The experts feel that if this type of tumor [embryonal carcinoma] spreads, it has a good chance of spreading to the lungs. An RPLND would not prevent such a spread, so they feel that surveillance is the best way to ensure that you only get treatment if you actually need it, and if you do need it, it is better to get chemo alone as opposed to RPLND and chemo.""
If my husband's tumor is mixed germ and the largest part is embryonal carcinoma is this still true? We have vascular invasion so if I understand the norm it would go like this:
1. Wait for new blood tests 4 weeks past I/O
2. Check CT Scan
2. If blood test go down and CT/x-ray is clear than the recommendation is surveillance
3. If blood tests dont go down it would be chemo
4. RPLND would not be advised unless blood tests are up and ct is clear.
Does that all make sense.
Thanks!

[Scott]

Trisha, I think you've got it all right, except that last point about RPLND.

[Trisha]

Thanks Scott... so when would RNDLP be considered for someone with nonseminoma with the embryonal carcinoma as the largest portion of a mixed cellt tumor? or is it not normally part of the answer? Can't wait to see the dr. Thanks for all you help - this is tremendously helpful!

[Scott]

The most complete way to answer that is to refer you to the NCCN practice guidelines and this TCRC page.

Why did I say point 4 was a misinterpretation? Two reasons:

1. RPLND would be the wrong choice with persistent tumor markers.
2. RPLND is often a good choice even if the CT scan shows some metastasis to lymph nodes.

[dadmo]

Trisha:
I just wanted you to know that you're doing a great job and asking all the right questions. You're husband should be very proud. It's this type of research that saves lives.
I just want to add one thing about the RPLND. If he has enlarged lymph nodes and at the end of chemo they are still enlarged there is a great chance that it's nothing but dead cancer cells but they can't know that without removing the nodes.

[Trisha]

Thank you!

You guys have been so wonderful and it means a great deal to my family and I . We cannot thank you enough. It is so helpful to be able to ask these questions. Many thanks

[Jilleighn]

my husband did chemo and it was 3 rounds worth. Everyone reacts different to Chemo. His first round was not to bad and it only got worse. My husband all together lost 56lbs in 3 months becuase he could not keep anything down. He also did not need to have lympth nodes removed.