I haven't been doing very well on updating my blog have I? No, sorry about that. My only excuse is that I've been feeling good enough to do some little projects around the house so I've been busy. It's not a great excuse but here I am now. I was also waiting to talk to my Oncologist about our next steps before I did another update. That was yesterday, so here's the update.
We met with Dr. Njuguna yesterday and went over everything from the beginning. The pathologies of the tumors, the CT and PET scans, lab work, etc, etc, etc.
The tumors in my lung were both 100% Embryonal Carcinoma (EC), which is the testicular cancer that had metastasized to my lung. We had kind of assumed and hoped for this. Since my abdomen and lymph nodes were all clear, I had worried "what if this is another type of cancer? Why did it go straight to my lung?" The answer is that the tumor cells got into my blood stream and the 1st place your blood slows down long enough for them to attach to something is in your lung. EC tumors respond very, very well to chemotherapy so in a way that was a relief. Given that I had testicular cancer metastasized to my lung diagnoses me with Stage III testicular cancer. Assigning a stage really means nothing new to us but is a little bit scary because it is the highest classification given.
The lab work from my lung surgery showed that my tumor markers had dropped significantly. One of the markers, called AFP, is normally 6 but will typically have a number > 1000 in people with metastatic disease. My AFP before the 1st surgery was 146 and my AFP the day before my lung surgery was only 18. I had more blood work done yesterday and hopefully it will be close to normal. We find out on Monday. Normal tumor marker levels in your blood give you a better prognosis. Even though I'm a Stage III, I have very good risk markers. It's really a bunch of medical jargon that allows doctors to understand progression of the disease and discuss treatments having more information. I think its interesting but in the end it comes down to my body and the chemo fighting it off. Stage I with excellent risk markers or Stage III with poor risk markers, you have to fight.
On to treatment. The standard for testicular cancer chemotherapy is a combination of drugs called BEP. Bleomycin, Etoposide and Cisplatin. You do 3 cycles of these drugs so we call it 3xBEP. Cisplatin is the most effective drug against EC and is really nasty stuff. The Bleo is given in the smallest amount but is the most dangerous drug. It has traumatic effects on your lungs and actually causes death in 1% of patients. Very scary stuff. Approx 25% of patients will experience decreased lung function.
The treatment I will be on is 4xEP. Four cycles of Etoposide and Cisplatin but no Bleomycin. I was very happy to hear that Dr. Njuguna had been in contact with Dr. Einhorn at IUPUI. He is one of the international experts on testicular cancer. They discussed my case and in his opinion, the recurrence of my cancer is a separate cancer not related to the cancer in 2004. He recommended a treatment plan that doesn't include Bleomycin and that's what we are going with. Studies have shown that 4xEP is equivalent to 3xBEP but you lose the lung toxicity. I'm all for that because I have a master plan to take down Hoopfest next year! 2011 is going to be a great year, I'm really looking forward to that.
By the way, one cycle consists of a 3 week period. Week 1 I get the drugs 4-5 hours a day, everyday. Week 2 and week 3 are rest weeks. Essentially I get 4 full weeks of chemotherapy spread over a 3 month period.
I start chemotherapy on Monday. Yes, Monday the 18th. Dr. Njuguna was happy with the healing of my incisions and I've got a lot of energy right now so Monday it is. But starting now will mean that the holiday season might be a little tumultuous. My 3rd cycle starts the week after Thanksgiving and my last day of chemotherapy will be Christmas Eve day. Not ideal, but we are excited to get it over with.
That's the plan. We are jumping headfirst and hoping that 4 different anti-nausea medications will help me though. It's nasty, nasty stuff. The 1st cycle wasn't terrible the last time but I did lose my hair about 2 weeks in. The 2nd cycle was the worst so I'm trying to prepare myself for that plus 2 more full cycles. Essentially from Thanksgiving to Christmas is going to be really rough but I know we'll make though just fine. During chemo I'm going to try and be diligent in updating the blog every day. I'll try to get Noelle to give her feedback as well so you get the perspective of the both of us. I feel so bad that Noelle is having to deal with all this stress while being 5 months pregnant. I really hope that baby isn't suffering at all for it. Noelle is doing a great job taking care of herself and she is such a cute little pregnant girl :-) This baby is such a blessing, as is Brynnley. I can't be more thankful for the blessings I'm able to enjoy.
One of the things that chemo effects is your GI system. You can't anything good, no greasy burgers, no spicy mexican food and no Wing Stop! It's a shame, but we are heading there for lunch today so I can get my fix before we start on Monday. Thankfully its a nice day today and it will be a good time to make a trip to Coeur d'Alene. I'm excited!
5 comments:
Good luck with all of it! I really wish that I could come up and keep Noelle company. I miss you guys! I know it won't be fun but I'm sure that you will do great through all of this!
We are so glad that you can get started and get this done and over!
We want to help in any way we can so we will plan to come when you need us. We love you all!
Hi Adam! You don't know me but I know your aunt Carol and was actually directed to your blog by a friend of mine who works with your other aunt I believe. Anyway, my husband is a two-time testicular cancer survivor and went through 4 BEP cycles four and a half years ago. Since then, he has completed LOTAJA (a 206 mile/one day bicycle race)once and participated in it the last two years as well! He is doing amazing and so will you! Good luck to you and your adorable family!
Hey man hope that Chemo went well today. Keep strong brother. 2011 wakeboarding is right around the corner. It will be great having both kiddos in the boat next season!!
Stumbled across your blog and just wanted to let you know as a 7 year tc survivor who went thru IUPUI and had 4 cycles of BEP to stay strong. Were all in this together!
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