Post RPLND Chemo - Stem cell transplant questions

[cusscuss]

Hi All

I'm 4 weeks post-op after my RPLND performed by Dr Michael Jewett in Toronto... I was diagnosed in January '05 and have had 4 rounds BEP and an orchidectomy.

I don't have the final pathology back from Toronto yet (4 weeks seems a bit excessive to me for a pathology report), but initial reports indicate there was active cancer in the nodes that were removed.

I saw my oncologist yesterday. He obviously needs to see the final path reports before he can make a decision, but based upon the preliminary findings, he is recommending high dose chemo / autologous stem cell transplant to try and get rid of the cancer. He tells me that using "normal" chemo techniques may knock the cancer back for a while but have essentially no chance of a complete cure - he says the stem cell transplant is the only way.

This is crushing... Obvisouly the chance for a cure is good, but the treatment scares the hell out of me. The 4 rounds of BEP were very hard on me - during the second round I had a seizure and shook so hard I dislocated my shoulder. I don't want to spend months in the hospital and months at home in bed after that - a stem cell transplant knocks guys out for at least 6 months, or so I've heard anyways...

Have any of you guys been through the high dose chemo / stem cell transplant treatment? If so, can you offer any thoughts or advice.

I'm going to try and get a second opinion, but this proves to be very difficult. I'm in Canada and our public health care system is messed up. Fighting cancer is bad enough, but half the time I have to fight the system to get the scans, tests, and appointments I need. I would bet money is doesn't take Sloan 4 weeks to do a pathology report, but here in Canada we have no choice but to wait.

Thanks for any advice or thoughts you can give...

Mark

[Scott]

You're going to make it, Mark. We're all pulling for you. I do think that second opinion is a really good idea. Is there reason to believe there's still active cancer to go after?

[cusscuss]

Thanks Scott. Sorry for going on a bit of a rant there in the last post - I've been getting kind of frustrated lately...

Still no pathology report. I saw my oncologist on Friday and he said that if there was any live cancer in the nodes they removed that I'd need a stem cell transplant.

However, some good news today... My AFP, which was 31 pre-op, has fallen to 2.5! I emailed my stem cell transplant doc this information, and he said he'd recommend "at least 2 cycles of TIP" even if the AFP is normal.

I guess this is because there still could be some cancer cells lurking around in there that the surgeon missed. I don't really want to sign up for more chemo when the numbers are normal, but if it's TIP now or maybe a stem cell transplant later, I'll take the TIP...

I'm off to the farm for Christmas vacation... Happy holidays to everyone!

Mark

[Mom]

Mark, you have to do what you have to do. If there is a chance there is still some live cancer you need to get rid of it once and for all. Think Lance Armstrong, what he went through and where he is now. You can do it too. Great about the markers. Dianne

[Scott]

What does Dr. Jewett think? (You should feel free to rant a little as needed. )

[otherhalf]

Mark - My husband is going through the HD Chemo w/Stem Cell transplant. He has to go through it two times. He has been through it once and will be heading for the hospital tomorrow AM for his second round. He had Pure Seminoma which spread to lungs and lymph nodes. He did 3XBEP and 2XVeIP and now he is doing this. He was in the hospital 17 days and was feeling much better when he got home. The chemo wasn't that bad for him, the reinfussion was the hardest for him. He made it and we are hoping that this is his last treatment and that he will be cured after this. To date, this is his best chance. We were told after 3XBEP that the cancer cells had become resistant to Cisplatin. I hope everything turns out all right for you. Enjoy your holidays!

[cusscuss]

It's hard to find out what Dr Jewett thinks - I haven't been able to get a hold of him or his secretary for a month (sigh). When he finished the surgery he said there was a 50/50 chance he got all of the cancer. If not, then I might need "a little chemo". To me, a stem cell transplant is not a little chemo...

The pathology finally came back and showed live cancer in the removed lymph node - I expected this. However, since my surgery my AFP has normalized (2.5), so there is a chance (at least I think there is) that all of the cancer was indeed removed. If so, then what's the harm to wait and see? My stem cell transplant doc told me back in June before my BHCG normalized that it didn't matter if they did the transplant at a BHCG of 13 or 1300, so I don't see why waiting wouldn't work here to see what happens...

Even if they want to make sure and give a couple cycles of TIP to remove any existing cells that don't show up on scans or exist in enough quantity to throw markers, I can live with that, but it's hard for me to sign up for high dose chemo with normal blood markers.

Thanks to everyone for all of your support.

PS - why does chemo always end up happening in the winter? It's COLD up here with a bald head in the winter

Mark

[Scott]

Any update, Mark, on your plan of attack?

[Fish]

Hi Mark:

I'm sorry to hear they aren't clear on a treatment plan. I would feel the same way you do. Why have high dose chemo if the markers are normal. That's why I decided not to have radiation after my seminoma -- I wanted proof that I actually needed treatment.

Have you tried to contact Sloan or IU for another opinion? Also if you haven't checked out www.nccn.org look at their guidelines for tecticular cancer, it might help you to make a decision.

All the best, you will be in my prayers.

Jim