Stem cell transplant, tandem.

[Pwsuba]

It’s been a while since I’ve posted. After consulting with Dr.E and Dr. Nieto (MD Anderson) I chose to go with Dr. Nieto and the HDC w/ SCT.

I’ve been at MDA for roughly a month now, they immediately swapped my port for a dual line CVC (fun times with that, first attempt on left side kept going up my neck painful as hell. Failed insert. Next day right side 15min done)
I had a TiP round before getting to MDA (it was getting almost 2 months with no treatment). Tests in GA showed my AFP at 700 (down from the high of 3000) then TiP couple weeks, drove (Well I rode) to MDA.
Test here showed my AFP was 14,000 Dr. Nieto felt it was a bad test.

Went inpatient for TiP #2. / mobilization chemo. Day after chemo nupeogen started, 4 shots worth a day. Discharged after 5 more days. Clinic every day, blood work every other. Down to 2 neupogen a day, after about 34 shots my WBC was high enough ran the test for stem cells. Good to collect, 10million needed, day 1 ~6 million day 2 ~5 million.
Whoowho, well except for that means HDCw/ SCT time. Dr. Nieto uses a tandem transplant regiment, different chemo ‘cocktail’ each time.

I’m being admitted tomorrow for round one, which as the LPN described “it’s the roughest nastiest chemo treatment the hospital does”. Continued with “the worst side effect patients get is severe mouth sores, could be so bad that you can’t eat or even swallow your own saliva.”
Also described as 3rd degree sun burn in your mouth/throat. So yay.
Then the usual nausea, neuropathy, etc.
I’ll probably be on a pain pump.

The good news from my pre admission testing is my brain mri came back totally clean still. My pelvis/ab/chest ct was about the same couple spots on my lungs (3-4mm max) tumor against L2 2.5 cm x 2.4cm AFP test wasn’t back yet :/ but with no real change fairly high confidence 14,000 AFP was false.

Not sure how many others on here were late recurrence germ cell tumor (

[Trekga]

Wishing you the best. There are several who should respond with late recurrence. curious why you did not go with IU? What is your back story again? Again, wishing you the best.

[Pwsuba]

While I know he is a top authority with testicular cancer I felt somewhat dismissed as a worthwhile case by Dr.E. I am positive that he did not mean so but that’s the feeling I got.

Being late relapse, 2% have late. The odds of platinum refractory is extremely high (I don’t know/remember any percentages and survival rates are low)

2009 originally Dx stage IIIb 4xbep was originally planned only did 3xbep and 1xep
July 2010 Dr. Foster RPLND 2 ~10cm masses removed.
Scans / blood work through 2015 clear.
Nov 2017 start of lower back pain, clinic suspected may be kidney stone
Dec-Jan pain increases in lower back. CT ordered, tumor pressing against L2 w/fracture
Jan 18’ Oncologist in ATL (my original oncologist passed away in oct 17) says he consulted with Dr.E on my case and 4xep was agreed with (now, not sure this happened). Because back pain was so intense I was admitted in ATL biopsy confirmed germ cell tumor.
Feb 4xep started.
- AFP rose to ~3200
-single mass in ab bone involvement at L2 and small spots on lungs.
4xep failed (duh, probably should have been TiP)
- email consults with Dr.E, surgery would be curative option, Dr.Carey recommended.
- bone and lung ‘infected’ surgery won’t be curative
Back to thinking I’m dying limited time left.
Decided I’m not done fighting.

-consults with Dr.E planned in person, flew to IU. Dr.E did blood tumor gene test thing to see if any targeted option, did advise it was a LONG shot. Also gave another chemo option (some of which I will be receiving in this HDC I’m about to get). Other than that he was kinda just, late relapse seems to move slower bye.
-consult at MDA w/ Dr. Nieto, his demeanor was more ‘This is my treatment regimen for late relapse germ cell tumor, we’ll get this cancer under control and you’ll be ok’. Just felt more comfortable here. Did my research, while a newer protocol it’s promising in results. Insurance pre-certified the treatment so here I am. (Otherwise since overall it could reach close to $750,000 no way I could cover that)

Though Since I had only worked for my employer for a short period before this hit , they allowed me 6months medical leave before terminating me as of 7/31. But I have COBRA. (I had just graduated May 17, but I did pass the BAR first time).

[biwi]

Best of luck, I hope this kicks its butt!

[Pwsuba]

The HDC I’m receiving is:
Gemcitabine 1500mg/m2 IV
Docetaxel 275mg/m2 IV
Melphalan 35mg/m2 IV
Carboplatin 275mg/m2 IV

[Tarc79]

I felt the same way about the way I was treated with respect to my recurrence at Indiana. I went there because we had agreed that a lung surgeon would be present at my consult. Instead, everything felt rushed and there was no surgeon to speak. Apparently, he got "busy" with something. Not nice when you flew all the way to this meeting and when you know death is certain if you don't get treated concisely and appropriately.

At that point, MD Anderson felt much better. There were many things that went wrong at MD Anderson , however. I think the biggest mistake was starting this incredibly difficult treatment right before Christmas. It sounds like you got a little dose of it with your CVC placement. If I were you I'd ask for a IR surgeon to do all those type of things. You may even ask for going to another vascular access clinic outside the hospital. My doctor left the country for vacation right after I lost my kidneys. The floor doctors do not plan for possible side effects. They are only reactive not proactive. They also react very slowly when you are literally dying.

So, my advice to you, buddy, is to be as alert and informed as possible. That includes knowing your condition, checking the drugs and dosage and demanding appropriate care to the point of frustration. This will be hard when you are super weak. So, it would be great if you have a support network throughout this ordeal.

That said, I am able to write this message to you because I got treated at MD Anderson, which saved my life but left me permanently disabled. Know that you have a very tough road ahead of you. The mouth sores will be the least of your worries when the poison attacks your body. Make sure that you tell all the side effects you are experiencing including your psychology. Watch out for your kidney and liver functions. Observe your pee. Alert when if the amount drops or it looks/smells different.

I actually believe that you could be cured with HDC and subsequent surgeries. I wish you the best, and will keep you in mind! You got this! Don't give up!!