Hello and HELP

[cellblock]

Hi all,

I was diagnosed in May/June with TC. I had surgery (Orchiectomy of
the right one) at the end of June. Tumor markers after surgery were
still elevated and I went through 3 rounds of BEP Chemo. I went back
in for blood work and my markers are higher now then before starting
chemo (Beta hCG = 418,000 mIU/mL. I'm not sure what's next for me. I
have a feeling that my doctor might be missing something. Can anyone
give me an idea of why my markers would be higher after chemo?

[danebert]

When did you finish chemotherapy, and where were you treated. Also, what were your markers at diagnosis and during chemotherapy. The doctor should have monitored your progress during therapy. Did you have any scans done before, during, or after chemotherapy. If you answer these questions, I might be able to tell you what is next.

[cellblock]

Scans and such

I had a CT of my lower GI prior to starting chemo (started chemo Sept. 12). I just finished up my three cycles of BEP the beginning of Oct. My Beta hCg before chemo was 35,700 mIU/mL and AFP was 6.4. I was treated here in Prescott, AZ after a consult at the Mayo in Phoenix. My diagnosis was a non-seminomatous mixed germ cell tumor 80% embryonal carcinoma, and 20% yolk sac.

[nzsteve]

Hi,

Ive only had elevated AFP during my treatment, so I dont want to comment directly on the HCG being elevated, but in your shoes Id probably be looking right now at getting a CT done. Did they find anything abnormal in the prechemo CT?

I would have expected them to rescan you after the chemo for comparison with the original ones, especially with a rise in markers. Make sure they do chest and abdomin, and you might want head thrown in just to be on the safe side (might sound extreme, but Im not trying to be alarmist by adding head... From what Im told it would be very very rare for the TC to jump there without showing up in your lungs, but even with that Ive 'elected' to have it done on 2 of my 4 CTs because I want to be ultra sure theres nothing bad in there!).

What after that will depend in part on what the scans show. Hopefully they will all come back clear, but given as I dont really know much about elevated HCG I wont guess what might be causing it in that situation.

Good luck,

steve

[dadmo]

cellblock:
Welcome to the forum. Do you know what your markers were before chemo and the compostion of the original tumor? Have you checked out the list of experts at tcrc? If not the link is here (http://tcrc.acor.org/experts.html). I have had occasion to call more then one expert and you will be amazed at how willing they are to help. As I'm sure you know it's not uncommon for markers to rise at the begining of chemo but they normally drop by round two. Try calling one of the experts and keep us posted. I'm sure others with this problem will chime in and give you better information then I did.

[Scott]

Welcome, cellblock. What are your doctors telling you?

In addition to your elevated tumor markers, what did your CT scan and chest x-ray show before you started chemotherapy? There's a possibility, however unlikely, of spread to the brain or a second cancer in the other testicle, which your chemotherapy wouldn't have gotten.

I agree with dadmo about consulting with a testicular cancer expert. Please keep us informed as you learn more.

[cellblock]

My doctor said "we have to do salvage chemo ASAP" when he saw that my Beta hCG was that high. I've completed my 3 cycles of BEP. Before starting BEP my hCG was 35,000, now it's 418,000. The CT prior to chemo and after surgery showed nothing abnormal. I'm having a CT today so we'll see what happens. This has got me freaked out.

[danebert]

It sounds to me as though you will need high dose chemotherapy with tamdem stem cell transplant. You are probably platinum refractory ( progressed within 4 weeks of the last cycle of chemo). The other issue would be trending your markers during chemotherapy, to find out if you are absolutly refractory to platinum therapy ( progressed during therapy). Also, for cases such as yours Memorial Sloan Kettering has just developed a chemo combo called TICE < taxol, ifosfimide, carboplatinum, etoposide, which shows promising results. You might want to contact them or Indiana, as the mortality rate from germ cell tumor or toxcicity from high dose chemo is lower then in your average oncology clinic. THe rise in Beta HCG probably isnt from a contralateral testicular tumor, and regardless of site of disease, you will need chemo. Desperation Surgery is never performed when the HCG is evevated to thayt extent.

[Scott]

I'm not sure where you're located, cellblock, but I think you or your doctor should consult with the Indiana University Cancer Center immediately.

[amorgan74]

Status???

We haven't heard from you on this thread so I was following along and wondering how everything was and if you have talked to one of the other cancer centers? Keep us posted. Hope all is well. April

[cellblock]

Cellblock Update

Gentlemen,

I found out that my mrkers weren't nearly as evelated as I thought. My BetaHCG was 793 IL/L on retest. Went to the Mayo in PHX and am currently going though 3 cycles of VIP (in house) with possible stem cell transplant at the end.

Now my current problem. . . lack of sleep. I'm so friging tired and cannot find a comfortable position to sleep in. Any ideas? I cannnot seem to get my mind from going a million miles a minute.

VIP is tough, it's taken a lot more out of me then the BEP protocol did.

THanks for the support and I look forward to hearing from you guys.

[dadmo]

cellblock:
That news is certainly better then what you were told before. This wont make you feel any better but being jumpy during chemo happens a lot. I have never seen it listed as a side effect but it has come up on this forum several times. My son was so bad that at times we would go for midnight walks. Just hang tough and this will pass to.

[amorgan74]

Sleeping

cellblock, I don't know what your situation is where you live but my husband had a very hard time sleeping with 3XBEP too. The only rule we had was if he fell asleep then I covered him up with a blanket and moved to another room until he woke up. He went through about three weeks of sleeping whenever he could and he took sleep aids at the same time and I am sure they helped but he couldn't tell it. The main thing that we did was have a blanket and pillow that only he used and I just let him sleep where he could when he could. We also walked during the middle of the night or sat on the lawn furniture. Hopefully something will work for you soon. I saw how frustrating it was for him to not be able to sleep and I know I got tired just trying to keep up with him so he wouldn't feel like he was on such a different schedule. He would nap during the day while I was at work and then be up part of the night. We did whatever we could to work around it. Good Luck and I hope all is going as well as can be expected. April

[carpla]

Cellblock--my husband had 4 rounds of the VIP chemo and he experienced the jumpiness and nervousness as well. Both the doctors and the nurses told us it was from the Decadron they pre-medicated him with prior to each 22-hour cycle of chemo. Once they stopped the Decadron, the jitters and jumpiness went away. Ask your doctors about this possibility--it really helped my husband, who, of course, was going through a rough enough time as it was! They also discontinued the prescription Decadron he had at home and it really turned the trick for him. Good luck!