**After the Tandem Transplant - HELP

[otherhalf]

Hello all! It's been a VERY long time since I've had any new updates. I feel bad with sharing my news among so many hopefuls.
I'll give a brief synopsis of my husband's case for all the new people or those that don't remember.
He had TC in 2005 that had spread. 3 rounds of BEP Cancer returned in June, visited IU in July more high does chemo in Aug & Sept no change so he had the tandem transplant first one in November and second one in December of 2005 and got out of the hospital 1/11/2006. We've been one year (every three month scan) clear...until... it's back. I don't get it, I just don't get it. His PCP said he'd pulled a muscle from coughing and that's why his side hurt. Then Monday his oncologist said his tumor markers were up, way up. We had the CT yesterday and are going today to see the Dr @ 1:00 CST.
Has anyone heard of false tumor marker readings? Is there something else that can cause tumor markers to go up? We are done with this, it was supposed to be over, remisssion, cure whatever. I mean it's TC for goodness sakes. The chances of survival are so high. When I first joined this site, I was inspired. I knew that rough times lay ahead but that it was only a moment out of our life time. This CANT happen, it HAS to something else.
Another thing that the Dr. was concerned about were his "liver enzymes"? What does that have to do with TC and could a miss reading of that make the tumor markers look different? It just CANT be cancer. They killed every cell in his body...TWICE in two months, he had an entire year of chemo, for one more year of life??? What kind of cruelty is this? I can't find anything to read on this. Apparently there are not enough cases such as this to even mention in any research articles. Can this really be possible?

[dadmo]

I would get IU involved right away. It's quite possible that it has returned. This is from the tcrc site

11) What is the overall time table for testicular cancer recurrence?

CN: Our general time table is that 80-90% of cases will recur within the first year of diagnosis. The vast majority of the remaining 10-20% of patients will recur in the second year after initial management. Recurrence beyond two years seems to be a less than 5% proposition and may be in the 2-3% range. Late relapses of germ cell cancers have a unique biology and clinical management. Such patients probably should be seen at a center of excellence.

[otherhalf]

Thanks Dadmo. I left that part out. We've been seen at IU and our oncologist has already called them, before he even called us. We are expecting to have at the very least a trip up there. I couldn't find any studies they are doing that he would qualify for up there. We seen Dr. Foster and I've contacted Dr. Einhorn via e-mail on a few occassions.
Have you ever heard of this? A reoccurance after HDC with tandem transplant?
I'm trying to get some work done as I have to be going quickly to see the Dr.
Oh and he has an apointment (I don't recall mentioning this) for an ultra sound on the remaining testicle. I'm a little confused about that. I know I should've done my research. I've read a lot of these messages and there is so much hope and good new here. As far as research on all of Larry's latest treatments, it's pretty rare. I must be looking in the wrong places.
I agree with the IU thing. I am looking forward to going there and having them explain our next steps and/or that it isn't nearly as bad as it could be. He's been faithful with his scans the whole year of 2006. He did miss his blood work in Jan and Feb this year, but made it in in Mar (the 9th).

[dadmo]

First let's hope it's a false positive. It's quite possible that he has TCx2. We have several members that have, at a later point, had tc in the other testicle.

[Scott]

I'm very sorry to hear you're having to deal with another recurrence and extremely glad you've already called in the experts.

[Scott]

Then Monday his oncologist said his tumor markers were up, way up. We had the CT yesterday and are going today to see the Dr @ 1:00 CST.

Do you have the most recent tumor marker results? How high is "way up"? By now you must have CT scan results, too...

[otherhalf]

The new is...
More Chemo starting tomorrow. He will be treated with Taxol and Gator (?). Chances are less than 20% this will work. If it does affect the cancer which has now spread to his liver and "all over" as the Dr. said, we will; and I quote "ride this as long as we can". IU recommended this treatment and considering the alternative, Larry opted for the chemo. He did have an ultrasound of the other Testicle after the appointment. I don't know if any one recalls but this was a "pure seminoma" TC. Somehow it has changed and is now a "germ cell". My guess is that is the reason for the ultrasound for the otherside. I don't know the numbers but I can get a copy of all of that on Friday when he starts his treatment. I am so tired of fighting this horrible, horrible disease that is so curable. I mean what are the chances that it goes this far?? He is not a candidate for operation as the Cancer is too spread out.
I can not imagine what Larry must be feeling, besides anger. He is currently on Hydrocodone (?) and Morphine for the pain. He will most likely go bald again and all that other good stuff that comes with Chemo. My hope is that we can ride this until it is gone or they come up with another treatment option. I made a list of questions but didn't even think about it going to his brain. When the Dr said "all over" I assumed from his chest to his abdomen. Yes the pain was in his right side and his Dr. (Dr. Lohrey from Cancer Care Associates - in Tulsa, OK) said that his liver was the cause of his pain. With treatment coming up and FMLA being unpaid, three teenage daughters, one grandbaby and the need to be with him through every single thing. I may not be able to update often but I will try to at the very least after each cycle, which is once a month.
I don't know what I would do w/o this website, I've learned what little I have from here. Part of it is overwhelming and another part of it is there is so little out there when it comes this far.
Thank you all, for you well wishes and advice, and for being here on this site to answer questions and guide us dealing with this.

[Mom]

Well, the news really stinks but don't give up. Larry is giving it his all and 20% is better than 0%. Stay strong, try to take care of yourself. Dianne

[Karen]

I am so sorry you are going through this again. We are here for you and I am praying that Larry has relief with the pain meds and the chemo isn't too rough..and kills this monster disease once and for all. Take care.

[djmac]

I don't know if any one recalls but this was a "pure seminoma" TC. Somehow it has changed and is now a "germ cell".

Seminoma is "Germ cell". Has it changed to "mixed germ-cell"? That would be non-seminoma. What are his markers?

I'm really sorry about all this, and wish you the best.

[dadmo]

Otherhalf:
One day at a time, that's all you can do, one day at a time. The statistics are just numbers. Someone has to be in the 20%, why not Larry? That 20% is a general number and from everything I have ever read the odds get better when you have oversite from a center of excellance.

[Savin16]

I'm so sorry Larry and you are going though this. It's just horrible, but like Dadmo said, someone has got to be in that 20%, so try to hang in there, you have another long road ahead, but know we are all thinking of you both and praying for you.

[Hopeful]

Hi other half.

I'm sorry to hear that the cancer came back.. Unfortunately, I do understand that one with my husband.

Please contact me if you want and I can give you ALL information about treatments and other chemos that are not standard for testicular cancer.

The chemos you are doing now are gemzar/taxol which is usually what IU does after HDC failure. Whatever you do, DO NOT go by the statistics. I know (and believe me I know) that you know them, however you don't know what will work for your husband.

Whatever you do, make sure your husband is doing Avastin too. Avastin is a drug used with other chemos, that helps block the tumor from getting to a source of blood. Blood is the feeding source to to a tumor, so avastin helps stop that supply.

Please, please, contact me. I know of multiple other things too. My husband did everything possible.

Also, where are his tumor at?
Patti

[otherhalf]

Seminoma is "Germ cell". Has it changed to "mixed germ-cell"? That would be non-seminoma. What are his markers?

I'm really sorry about all this, and wish you the best.

I believe it is mixed-germ cell. I can't be sure. I didn't get his markers on Friday and the Dr. didn't want to seem to tell me what they were. We see a new Dr. on Thursday. I'll ask for them again. and let you know.

[otherhalf]

no numbers still

Uh, answer a few quick questions.
Smoke pot
No he doesn't, should he be?
Tumor location
enumerable masses, liver, lungs, abdomen, chest...some mention of renal something and aortic something.
Avastin
oral? is this given in the vein?
We see the Dr. and do blood work tomorrow. I'll get the numbers and try to get a copy of the CT scan results to answer more questions. I get on here and beg for help and don't even have any answers for anyone to help me.
I'll post again soon.
Thanks all for everything.