Recurrence after Chemo questions

[Lori]

Tom's wife, sorry your going through this again. I'm a bit late in reading these posts but wanted to tell you our experience. My husband had low tumor markers (HCG around 16/AFP around 100) but a lot of tumors in his chest, neck and abdomin. When we met with Dr. Einhorn I really pushed doing the surgeries before HDC thinking if we remove the tumors than the markers would go down and we could avoid HDC. He explained that 1) if there is cancer in the tumors the chemo would hopefully help to get rid of it 2) recovery time from surgery is much longer than recovery time from chemo. So best to have the chemo first then go right into surgery if still needed. It worked for my husband!

Good luck with the next round of chemo!!!

[Toms Wife]

We're meeting with Leiber on Friday -- thanks for the courage to get a 2nd opinion.

[Toms Wife]

We met with the doctors today and they say that although his initial path was pure seminoma, they are considering this non-seminoma which is consistent with the AFP levels being up before chemo.

They definitely said the salvage chemo before surgery was best -- make sure its not active disease before going in to remove it.

Looks like he'll start again in 2/28 -- we're right back in it!

[Margaret]

The oncologist seems to think chemo before the RPLND is the best course. We are meeting with the onc and urologist together on Monday (small victories) to review all options and ask questions.

Chemo before RPLND sounds like the opposite of what I am reading on this site.

Not sure how to handle the expert. I asked if our doctor would review the case with Dr. Skinner at USC and was told we could call and schedule an appointment with him....don't docs in the same hospital work together?

Hi 'Tom's wife'...first off, I am sorry that his counts went up. Hang in there.

Second...my husband's doctor also had him do his chemo before his RPLND. He said that there was more success in shrinking the tumor before trying to remove it. Now I am coming in a bit late to your situation, but this was what worked for my husband.

Good luck!!

margaret

[Toms Wife]

Its only one node. He had BEP - finished in October, but HCG is back up at 12.8, so chemo again and then RPLND. It would be a different chemo - Cisplat, ifosamide and taxol or his doctor is leading a clinical trial on oxaliplatin, gemcitabine and taxol.

[Toms Wife]

more info today

The oncologist seems to think chemo before the RPLND is the best course. We are meeting with the onc and urologist together on Monday (small victories) to review all options and ask questions.

Chemo before RPLND sounds like the opposite of what I am reading on this site.

Not sure how to handle the expert. I asked if our doctor would review the case with Dr. Skinner at USC and was told we could call and schedule an appointment with him....don't docs in the same hospital work together?

[Toms Wife]

Thanks

You guys are great. You are right -- doctor says this case is pretty unusual. Doctor is at USC and the original path was done their. Thanks for the expert list. I will make sure that Donald Skinner has reviewed the case and is brought in on it.

Not sure why we haven't discussed radiation -- but I'll bring it up along with the PET scan.

This is so helpful...

[Fed]

With only one involved node, I'm not quite sure why your husband wasn't offered radiation for the first line treatment. Is radiation still an option?

I have read that radiation is also a feasible alternative if there is node involvement, though the dosage needed is considerably higher (35-40 Gy). HCG levels sometimes go up in seminoma, but I think this is fairly uncommon. Where was the original path done?

[djmac]

I'd love some experience...thoughts? next steps?

Thanks.

With only one involved node, I'm not quite sure why your husband wasn't offered radiation for the first line treatment. Is radiation still an option?

[dadmo]

That mass will likely need to be removed and blood work is certainly indicated because of the elevated markers. It may be time to get a second opinion from an expert here's the link . Has your husbands doctor considered a PET scan to see if thay node is active?

[Apache]

my node was big pre chemo Rx and then got smaller post chemo Rx but then was larger several months later. it continues to hover in roughly the same range. gather the facts, re-test if necesary and get several opinions. it scared the crap out of me and I'm hanging tough so I'm sure that you and Tom will do the same.

[jennys]

Hi Tomswife,

My brother had his bloodwork done about 1 month after 4XBEP and his HCG level was at 3800, His Onc said that they would check it again in 2 weeks time and if it kept going up that he would require high dose chemo; his next results were at 8000, and last test (2 weeks ago) were at 14300 so he starts his HDC tomorrow.

I'd say that is what your onc is doing, checking to see if it keeps going up to decide what to do next.

Hope all goes well
Take care
Jenny

[Toms Wife]

My husband was diagnosed 1/31/06 - orechiotomy on the left side, pure seminoma 1.5 cm, T1 stage, 0 HCG. Observation was recommended. At the 6 month check up, HCG was at 56 and CAT showed left paraortic node measuring 2.5 cm. He did 3 rounds BEP. At 1 month follow up he had near-resolution in the left node and HCG was <0.5. Today we went in for 3 month follow up and HCg is at 10 and the node is at 1.7x1.6 cm from previous measurement of 1.5x1.1.

The oncologist suggested running the blood work again, but said everything looked "okay". The urologist said we probably should have removed the lymph nodes as soon as chemo was over -- and if the HCG is up he may need chemo again and then the surgery.

I'd love some experience...thoughts? next steps?

Thanks.