It's me again

[newly-wed]

Hi everyone,

I wrote in awhile back asking for help with my husband's cancer diagnosis. He was diagnosed with cancer in October, and since then, the exact type of cancer has been fuzzy.

We have sent his biopsy and chart information to many pathologists around the u.s. and some say extragonadal germ cell and some say neuroendocrine carcinoma, possibly originating from the islet cells of the pancreas.

Currently, my husband has 4 tumors in his liver, the largest one being 6 cm in diameter and one tumor that is 2.8 cm on the tail of his pancreas or on his spleen. Obviously, if this were germ cell, it is presenting itself in a unusual way.

He is 26 years old with no history of cancer in his family.

Our latest pathology report stated germ cell and our oncologist has been treating my husband as if it were germ cell. He has had significant response to the chemotherapy- 4xBEP, 2xVeIP but there are still some residual masses that I described above left over.

The oncologist thinks that they might be mature teratoma (non-cancerous) cells that need to be surgically removed. However, he wants to give my husband 2 more rounds of VeIP before we look into surgery just to make sure we kill all the cancerous cells while we can. We are going to try and meet with a surgeon this week to discuss this option.

My husband has a really tough time with the VeIP and it gets harder and harder with each cycle. His nausea is really extreme and he has lost a lot of weight, and his platelet count is having a hard time bouncing back each time. We are taking a week off to think about our situation and to let my husband's body build itself back up before heading into chemo again.

I guess I don't really have any questions and I am pretty sure his case is so unique that it is hard to relate. In any rate, it feels good to write about our fight and any words of comfort/advice would be helpful.

Thanks!

p.s. we have been in contact with doctors at johns hopkins and md anderson about his case and they are getting back to us with their opinions as well.

[Scott]

I don't know whether it's appropriate in your husband's case, but has a PET scan been suggested to help determine whether there is active cancer remaining?

[newly-wed]

I asked that question to our oncologist on Friday and he said that whatever a PET scan showed, he would still suggest the 2 more rounds of VeIP. Also, he said that sometimes the PET scan shows "inflamed cells" and not necessarily cancerous cells...I would love to have one done though because what if the scan showed no activity? I would still want us to go ahead with the 2 more rounds, but it would make us feel so much better! If the scan showed active cells, we wouldn't get scared necessarily because the cells might just be inflamed from the process of chemo or from the bulk of the original tumor mass. I guess I could push the issue, but according to our oncologist, it wouldn't change our course of action.

[newly-wed]

I forgot to mention that his afp was normal Jan 13, after the 4 rounds of BEP. We will see if it is still normal on Monday, when we go back for a red blood cell booster shot.

[Jens]

Hi newly-wed.

It really seem like something has responded well to BEP (= Extragonadal TC).
That is good news!
VeIP will take care of the rest and surgical "cleaning up" is not that unusual anyway. Stay confident, there are good signs here!

Best wishes
Jens

[newly-wed]

update

Thanks to everyone who have responded to my previous posts. My husband received 4 treatmensts of bep and 3 treatments of vip (he was supposed to do 4, but his counts bottomed out and we spent 5 days in the hospital revitalizing him) and he is now off of treatment. It is SO wonderful to be not doing chemo any more. We had a love hate relationship with the drugs, as do most other patients. The drugs worked miracles, but they were tough to tolerate on a day to day basis.....especially so mch and especially the vip. Since stopping treatment, we have gone out to dinner (the first time in 6 months), attended the local college's baseball game and have been to church for 2 Sundays in a row. I thank God and all of those who have supported us through this jourey. We are truly blessed.
Our latest CT scan report shows stable masses (since January) in my husband's liver and near his pancreas. His tumor markers have been normal since Janurary as well- his disease has presented in a unique way and we have actually not received a definate diagnosis since October, when he was diagnosed. Because he is 26 years old, and because he responded so positively to the germ cell chemotherapy regimine, the doctors are assuming that the diagnosis is testicular in some form....as unussual as it may seem.
We went in for a PET scan on Friday and we will find out the results tomorrow. Does any one have any experience in interpretting the report on this type of scan? I understand that the test may produce false negatives or positives, but any information is helpful in our case. We also have a biopsy planned for the 28th of this month to determine the make up of these residual masses.
I would have to say that we would win or get runners up for the dubious award of "the couple who had to deal with the most hardship in their first year of marriage".
thanks again.
-Elaine

[Scott]

Hi, Elaine! It sounds as though the two of you can make it through anything -- but you've had more than enough already. I'm really glad to hear things have been looking up.

[Mom]

Gosh, Elaine, daughters-in-law are wonderful. I am sure having you by his side got him through some pretty tough situations. You are the most important person in his life, I don't mind taking second place to my son's wife. He needs her more than he needs me. You still have some challenges ahead but hopefully, they will be tiny bumps. Consider yourself hugged! Dianne

[newly-wed]

We got the PET scan results and........ great news! - The remaining masses appear to be dead tissue, according to the radiologist who read the films. We will be going in for a laproscopic biopsy on Friday to confirm this news, but all things considering, we are in a good place. Thanks for the hug! and the prayers.
-Elaine