Questions on surgery and AFP Marker

[Lori]

Hi, found this site yesterday. My husband and I love it and thank you all for sharing your experiences.

Jon, age 36, was diagnosed in late May with Stage 3, good prognois - majority immature teratoma, 10% seminoma and yolk sac elements. Enlarged lymph nodes in belly, chest and both sides of neck. Largest nodes are 5-6 cm and have grown 1/2 cm from may to mid- july ct scans. He just began his 3rd of 4 EP rounds.
AFP Marker: was 244 prior to I/O and 169 after I/O
After 1st week of chemo went up to 194
Has since fluctuated up and down between 158 and 95

We are wondering if others have had this issue with AFP - where it isn't showing a downward trend or an upward trend?

Also, we are very nervous about all the surgeries Jon will have - potentially a different surgeon for each part - belly, chest and neck. Has anyone had the surgery on chest or neck to remove the nodes?

Thanks!

[danebert]

The enlarging nodes can be caused by the immature teratoma which doesn't respond to chemo but isn't malignant " per say ". They will continue to enlarge even after all malignant disease has been eradicated. This is called growing teratoma syndrome. The Flux in AFP can be attributed to two diffrfent causes. Initially almost everybody has a fluxuation when the cells die, because as they die the proteins are released into the blood. However, the fact that the afp ins;t normal could be cause for concern. AFP has a half live of 5-7 days. After the second cycle the markers should be to normal, never increase. Although there are other causes of elevated AFP, ( liver damage , medications) I would probably call INdiana University for advice. Not to alarm you but if your husband is refractory to chemo ( the chemo no longer works) they might be able to change the drugs or use higher doses which can increase his chance of cure. First make sure the trend is correct and the AFP has gone down then up after the second cycle. FInally, as for the surgeries. The surgery to remove the stomach lymph nodes and residual disease in the lung can be removed in one procedure. Indiana University has some experience with this as well . Its called Thoracoabdominal retroperitoneal lymph node disection. At any rate I would call Inidana University for some advice on the AFP levels. Dr. Einhorn is great and willing to consult with your doctor so discuss that along with your concern and his opinion about the AFP results. Good Luck, and keep us updated.

[Davie]

Lori,

I have been through chemo, but don't have any similar experiences to share.

I would, however, recommend also posting on TC-NET, as you'll reach a wider audience and also Mark and Doug who run that site are also very knowledgable.

(http://www.acor.org/mailing.html?l=t)

Hope everything goes well with your husband's treament.

Davie

Davie

[dadmo]

Lori:
Here is a list of experts. I would give them a call regardless of your husbands condition. As danbert said the AFP should have normalized but it may not be a big deal, it's not all that rare to have a "bloom" in the numbers but let an expert help especially with the future operations. Indiana, and Sloan Kettering in NY are great and several here have been cured in Boston. Keep us posted please.

[Lori]

Hi, thanks for the info. We are actually going to see Dr. Einhorn next week. Had seen a doctor in Sloan last week whose expertise is high dose chemo - but the day before the appt the afp went back down so we were told to continue course. Of course the blood test 4 days later showed a rise again. Mentally hard to take information up and down like this.

Anyway, we are anxiously awaiting the mtg with Dr Einhorn as we've heard so many good things. Never heard of the surgery for chest/stomach in one - so thanks - now we know what to ask for.

Anyone have thoughts or info on Sloan vs Indiana for the actual surgery?

Lori

[Don]

In many cases of Yolk-sac type tumors afp will fluctuate from high to low..Wondering if that could be one of the elements of his tumor.. my afp bounced from over 45000 to 3900 back up to over 23000 and so on for months ..I had some tests vary within 1200-1500 in just a few days.... Sloan VS.Indiana??? I don't think you could go wrong either way .. I hope to see the number continuing to fall...Best of luck!!!!!

[Lori]

Wow Don - we are concerned over 40 point fluctations and sounds like you had 1000 point fluctuations. Jon does have "varient yolk sac elements" so it explains the AFP, just not the ups and downs. We can't wait to meet Dr. Einhorn.

Thanks for sharing!

[dadmo]

I don't think Sloan will do the lungs and nodes in a single operation. I questioned them about this because my son has lung spots and Dr. Sheinfeld would only do them as seperate operations. Drom who's son is being treated at Sloan had to have 3 operations one for the nodes and one for each lung. Even though Sloan may have saved my son's life in this instance I would go with Indiana.