Surgery

[fuse929]

Tammy,

I've been keeping tabs on you and your son's journey so far, and I'm glad the surgery has finally been scheduled. It must be a relief to know that you finally have a good game plan in the works. I wish you the of best luck.

Bobby

[mstlyn]

Tammy, I am going to leave the advice up to the professionals but I am thinking of you and I am sorry that the numbers have reached 53. Hugs!!! Let me know if you need to talk.

Thank you Margaret, I certainly appreciate that you are there. Nice picture too.

Hugs

[mstlyn]

Message from Dr. Einhorn

Basically, with the rising AFP, this means that he has persistent yolk sac tumor. If his disease is limited to the abdomen, we would proceed with the RPLND and hope the surgery is curative. Therefore would repeat abdominal and chest CT scan and perhaps head CT scan as well.If he relapses again or if surgery is not feasible he would then need salvage chemo which would entail high dose chemotherapy for 2 courses (tandem transplant)


This is the first time that I have seen mention of persistent yolk sac tumor. Anthonys original path was 95% EC 5% Yolk Sac.

If Dr. Einhorn says to proceed wtih surgery then that is what we will do. Im wondering about the tandem transplant, the way it is referred to in his message.

high dose chemotherapy for 2 courses (tandem transplant)

This looks as if high dose chemo IS tandem transplant??

Can someone clear this up for me? A detailed (as much as possible) explanation of tandem transplant, would be great.

[Margaret]

Tammy, I am going to leave the advice up to the professionals but I am thinking of you and I am sorry that the numbers have reached 53. Hugs!!! Let me know if you need to talk.

[tccancercop]

Well the mass that is left over may be the source of live cancer cells - so that is most likely going to come out. Strange enough my AFP after I failed initial chemo went from 4.6 to 22, then to 53! Nothing was seen, but we did another CT scan several weeks later after my legs/arms felt "heavy" and sure enough there was the tumor - around the spinal cord forming. It probably was there before, just not noticed on the scan so early. It looks as if surgery and more chemo is a must in your son's situation. I would also shoot an email to Einhorn about High Dose Chemo as the next "chemo" option. I had a week of VIP for the tumor and that was it. The transplant doctor didn't want me anymore pretreated than necessary.

My nodes before EP chemo: two enlarged, 1.2 & 1.5 cm. Shrunk to normal after 4 x EP. AFP began to climb 6 weeks after and no lymph nodes were enlarged. Tumor showed up around spinal cord. AFP reached over 600+ ng/ul. Never any elevated BHCG or other initial metastisis within the body. I was recommended for salvage chemo VIP or TIP. HOWEVER .. ER Broun at Jewish hospital Cincinnatti, advised my oncologist that it doesn't work that well except to make my cancer more resistent to chemo. . so thats why I was told to do HDC w/stem cell for a higher probability for cure. (Due to my condition i presented in Cincinnatti, I was told less than 10% that I would even have a response to the HDC!!!)

[mstlyn]

Difference of Opinion between Doctors

I spoke with Anthonys surgeon and his oncologist.

The surgeon said he consulted with the oncologst at U of M and he said we should go forward with the surgery.

Anthonys oncologist thinks that Anthonys cancer is back because of how quickly it elevated to 53.5

Actually both doctors do not think this is teratoma anymore, due to the AFP number.

Anthonys oncologist is concerned that we should do more chemo before any consideration of surgery, because ..

Being that EC spreads so fast ..

If there was still cancer AFTER surgery, there will be a surgery recovery time .. and the possibility of infection or other problem that would further delay chemo after surgery.

With EC this is obviously a concern because it spreads so quickly ..

opinions? experiences?

[mstlyn]

There are later ones than this, but this will give you the general idea while I am on hold


http://www3.interscience.wiley.com/c...TRY=1&SRETRY=0

I am unable to read this. It says my browser wont accept the cookie. It shows main links for the site and when I chose "home" it loads the page fine. Maybe if you can tell me where to go from there I can find what you are trying to show me?

[mstlyn]

Does he still have slightly enlarged nodes? Sometimes teratoma can give off elevated AFP. . .there could be activity in the nodes now, but with the AFP going up a tumor is forming somewhere. ..just hasn't been found yet. Yours sons case sounds strangely similiar to mine with what I went through last year after failing 4 x EP six weeks later after it was finished! Get a hold of me if you have any questions! I don't think him going into surgery will cause anything to spread unless they come across something and feel otherwise.

Hey tccancercop, thanks for responding. His post chemo scan April 17th shows a residual mass measuring 4.7x 2.7. and thats all I know. Nothing was mentioned on the report about more enlarged nodes.

Teratoma was not in his original pathology, but his oncologist thinks that the residual mass is probably teratoma anyway.

His HCG is still <2

[tccancercop]

Does he still have slightly enlarged nodes? Sometimes teratoma can give off elevated AFP. . .there could be activity in the nodes now, but with the AFP going up a tumor is forming somewhere. ..just hasn't been found yet. Yours sons case sounds strangely similiar to mine with what I went through last year after failing 4 x EP six weeks later after it was finished! Get a hold of me if you have any questions! I don't think him going into surgery will cause anything to spread unless they come across something and feel otherwise.

[mstlyn]

To let everyone know what is going on.

I have emailed Dr. Einhorn and Robert my sons chemo dosage information to look at.

Meanwhile I found a message from the surgeon at U of M. He said that while the AFP is elevated (53.5) the CT scan is not showing anything new.

He consulted with U of M oncologist Dr. Smith, and he recommends going ahead with the surgery next week.

I remember Margaret posting that Dr. Sheinfeld will do surgery when the AFP is elevated but as long as its under 15.

Has anyone heard of surgery with AFP in Anthonys range? What do you think would make them want to do it, and will this risk spreading cancer if they open him up? Opinions?

Tammy