Day 3 & 4

(Pictured L--> R - Dr.(Maj) Wood, Lt. Dan, Nurse Cindy, Nurse Lori)

I had to go to work these days so I was only able to stay with Dan for the first hour of his treatment these days. It really sucks being at work and worring about Dan, although I know he is in good hands with Cindy & Lori his nurses at the base. Luckly his friend Adam Pohl was able to pick him up each day and drive him home. The treatments have been going smooth for the most part. Dan gets a little sick when first getting out of bed so we have some saltine crackers on the bedside to eat before leaving the bed and that seemed to help this morning. The rides to and from the hosptial are a bit worse also, but perhaps thats just my driving skills. Overall things are going as well as can be expected I think. The drugs are keeping the naseau mostly at bay but it also leaves Dan very sleepy and in a drug haze. Starting yesterday also Dan has been getting cold with teeth chattering and shivers. His temp this morning was 95.6 So he has been adding on layers and he thinks the Gatoraide helps also (perhaps its a mixture of being cold and some low Potassium, Calcium or Magnesium levels). I think we both look forward to Friday's final treatment and then getting a little break for a couple days. Dan said he would make a post this weekend so hopefully he can tell you in his own words how he is feeling.

For the nurses in the family I have a link to Dan's lab work in the link section to the left. I will update the spreadsheet whenever he gets lab work. Monday will be his next day to get a full set of labs (CBC, Chem7, LFTs)

Also, I have an appointment with the OB/GYN on base tomorrow for my referal to the base fertility doctor. I am in no rush to have the surgery I need until after Dan is done in March and my run is done in April. I will be proudly wearing my Livestrong shirt at the 1/2 marathon. Hopefully Dan will be there standing with Jeff & Cole cheering on Heather and I and Dan will be considered cancer free!

Day 2

Today was smooth, and I think the rest of the week should follow this pattern. We arrived at the hospital by 8. Dan was hooked up and IV flowing by 8:15 (His IV stays in when he goes home). And we left at 12:45. Dan was feeling nauseous from Monday starting about 1 hour after he got home and was a 4/10 on the nauseous scale. The Zofran and Compazine is doing an ok job but it can be better so during today's treatment they gave him some IV Compazine towards the end of the treatment and gave him a prescription for Ativan pills Q8 as needed at home to help his nerves and GI track relax. This seems to be a nice combo because Dan has been sleeping for the past 4 hours since we got home. The nurses warned us that every day will get a little worse until about day 10 when things start swinging back up. Days 1-5 he will have the Nausea, Day 6 he gets his Neulasta shot to boost his white blood cells which will make his bones ache all over, Days 7-10 his blood counts will be at his lowest so he will be tired and be at his highest point for getting something like a cold or flu. More updates later. I am off to take a nap!

Day 1

Timeline of Events:
07:45 - Arrive at Oncology Unit
08:00 - Meet with Dr. Wood for last minute questions. He said Dan's Pulmonary Function Test(PFT) was borderline and wants to talk with Dr. Brewer. Dr. Brewer decides to repeat the PFT with one additional test before giving his approval for Chemo
08:30-09:00 - PFT. This time Dan passed his 3 lung tests. The one he failed last week (scoring 75% of expected value) was a measure of absorption. He breathed in a tracker and then held his breath as long as he could and then blew out everything he could. This week he got 82% (80% is passing) and was allowed to continue with his chemo plan. The main reason his absorption is less than ideal is because he is slightly anemic.
09:00-09:30 - Wait for Dr. Brewer to call Dr. Wood back with his approval
09:30 Right arm IV placed and 1 Liter of Normal Saline infusion started.
10:40 - 2units of Bleomycin SQ given as a test dose to see if he has any breathing difficulty. At this point we met Andrew, an Army man currently on week 3 of 9 of the BEP cycle for Testicular cancer. He told Dan that Day 1 is the worst since your so anxious with what to expect and that it gets better.
11:40 - Kytril pill, Emend pill and Decadron IV given as pre-medication for nausea.
12:45 - 30units of Bleomycin IV given (over 5min) & 35mg Cisplatin IV given (over 1 hour).
14:00 - 180mg Etoposide IV given (over 45min)
14:45 - 1 Liter of Normal Saline (over 1 hour)
15:45 - Lab work drawn to repeat his liver function tests.
16:00 - Go Home.

At home he will be on Zofran 8mg three times a day and Compazine as needed.

So his day that was supposed to be 8-12 lasted a tad longer than expected. Tuesday-Friday should be alot shorter. 1 hour of fluid, 1 hour of Cisplatin, 45min of Etoposide, 1 hour of fluid. No bleo until next monday.

I will add some pictures and some detailed lab work for those intrested in the nitty-gritty stuff tonight. I had to work this evening. I dont want to bog down this site with tons of info so I am going to put the lab work into a spreadsheet and link you to it.

Spring Cleaning

How would you spend your last day before starting Chemo?


Dan & I decided that cleaning the house from top to bottom would be fun! So we set our Roomba in action on the carpets, moped the floors, scrubbed the walls and cleaned the bathrooms. I got called in to work on Sunday and while I was there taking care of my VRE patient I thought that cleaning with regular old Formula 409 wouldn't cut it so I brought home some CaviWipes (The hospital strength wipes clean, disinfect & decontaminate all hard surfaces - this stuff kills things you haven't even thought existed!)

Dr. Wood said about 1/3 of all his patients end up being hospitalized during their Chemotherapy treatment from common colds and other simple things but because of Dan's immune system being low it would be hard for him to fight it without IV antibiotics and fluid. So we are doing everything we can to avoid that by being super clean, washing our hands all the time and with Purell and making sure that those around him are not sick. Depending on how well he tolerates the Chemo will determine how much he can go into work and lead his normal life. At least he can do some work from home so he doesn't go crazy.

Tonight we are hitting the Best Buy for some games to play on the laptop while Dan does his Chemo (each session lasts 4 hours) and picking up Olive Garden for his friend Dustin & Erin Nowak who just had a baby boy, Max, just a couple days ago.

And for those looking for our decision, we went with 3 drugs. I will update you guys again soon.

Chemo Decision

I have delayed posting the results of our meeting with Dr. Wood on Tuesday as we attempted to make a decision. The doctor gave us 2 treatment options and we are talking to people we know & researching the two so we can make the best decision for Dan.

The two protocols (EP and BEP) are essentially identical in terms of initial cure rate. They are different in terms of length and possible side effects and potential long term survival rates. BEP has been studied for 30years so long term survival rates and long term studies are easier to find.
BEP Protocol: Bleomycin, etoposide, platinum agent (cisplatin) Bleomycin would be given every Monday for 9 weeks. Etoposide & Cisplatin would be given Monday-Friday every 3 weeks. So total treatment is 9 weeks long or 3 cycles. The BEP protocol uses less Cisplatin and Etoposide, but uses Bleomycin.

EP Protocol: Etoposide & Cisplatin. They would be given Monday-Friday every 3 weeks for 12 weeks, 4 total cycles.

Major Risks of each drug (Occured in less than 30% of patients):
Bleomycin can cause lung fibrosis in older patients (over fifty) and can be a problem in patients with extensive lung metastases or existing lung problems. Etoposide can cause leukemia many years down the road and Cisplatin can cause peripheral neuropathy (numbness and tingling in your arms/legs) and High frequency hearing loss, infertility.

Minor and Expected risks of each drug:
Fever, Chills, Hair Loss, redness or darkening of the skin, Nausea & Vomiting, low magnesium, low calcium, low potassium, low white blood cells, low red blood cells, low platelet count

Making the decision, thanks to my brother-in-law Jeff for doing some research:

Studies in the early 90s at MSKCC (Memorial Sloan Kettering Cancer Center) did use just cisplatin and etoposide for 4 cycles with similar success to PEB X 3 (cisplatin, etoposide, bleomycin-3 cycles) but today they use 3 drugs but with a lower bleomycin concentration than the Indiana University group. Furthermore, one study in 2001 showed that the Indiana protocol was superior to the MSKCC protocol. Although both showed a similar instance of complete response (90 v. 91%), the long term survival for the Indiana dosing protocol was superior (99 versus 88%). Also, a study published this last May compared BEP to EP (cisplatin and etoposide). Both produced similar response rates between the two protocols, but they were looking just at nonseminomatous germ-cell tumors. Also, the study did not have the statistical power to distinguish long term survival between the groups. Nonetheless, even the authors of that clinical trial favored the three drug combination over the two drug combination.

Friday afternoon Dan meets with the pulmonologist to have Pulmonary Function tests done and to have him review his CT-Scan of the chest and X-ray. The only thing holding us back from selecting the BEP Protocol was his "emphysema like changes to his lungs" reported by the Radiologist. These were attributed to Dan's tall and slender build but we want to make sure before we start Belomycin that his lungs are in good condition.

So a decision will be made Friday after he meets with the pulmonologist and Dr. Wood. Regardless of the protocol Dan chooses he will start Chemotherapy on Monday January 28th at 08:00.

Adoption update

Just thought I would post about the FAC(Family adoption consultants) information meeting we went to last night run by our assigned social worker, Jodi. There were 16 people in attendance, much more than I thought would come. We talked for about 2 hours. Most of the topics were about Korea. A little bit about China & the Philippians which are 2 other countries FAC can place children from. Talked about the Hague treaty and how FAC is already met the compliance's for that.

Most questions were about the wait. We all wanted to hear how long this will take. Jodi's estimate is about 1.5 years from start to finish. ~3months from initial application to formal application, ~3 months to get your home study done, ~ 6 months from study done to referral and then another ~6 months from referral to placement. Course you never know when things will slow down or speed up. Said most kids are 9-24months at time of placement and most are little boys.

There was a couple there from Columbus to come in and show their adoption scrapbooks to us and explain how their adoption went. Their son, Drew, is 2 years old and has been home for like 7 months. He was pretty impressive little guy, very talkative and playful. In Korea the children are kept in foster homes with at most 1 other child so it seemed from my untrained eye that he was fine with all his milestones which is always a concern with international adoption.

FAC knows about Dan's cancer and the treatment that will be required. They said to just keep going ahead with waiting to get to the formal application stage. From there we can just drag our feet getting all the paperwork done for the home study until Dan's doctors can say that he is in remission and can write a medical clearance for him.

I know there is a child out there somewhere for us, maybe a year from now we will have him. By the time our adoption goes through our little boy and Heather's little boy Cole should be only ~ 6months apart in age so that should be fun!

Dr. Hoopes

We met Dr. Hoopes this morning (Radiation Oncologist) and what a great doctor! He was so nice and informative. He is only a captain, so he must be fresh out of residency. He went to school at Indiana University (IU). IU just happens to be the epicenter of testicular cancer research and development. He studied under Dr. Larry Einhorn (click the link to learn more about him!), who is the doctor who discovered the cure for testicular cancer, and also the lead doctor who treated Lance Armstrong! In fact Dr. Hoopes sent Dan's CT Scans & lab data to Dr. Einhorn for a second opinion who confirmed that chemotherapy would be the best route to take.

Dr. Hoopes reviewed everything we knew and explained some more things in detail. First, Dan's cancer has been reclassified to T2N3Mo (or Seminoma Stage IIC). The original classification was based just on lab and pathology, and this new one has the CT-Scan info added in. He explained that normally if a testicular cancer is going to spread it goes into the lymph system and shows up high in the abdomen near the kidney. You would think it would go to the groin first but actually the testicles have a different lymph system from when you are developing as a fetus the testes are high in your abdomen and slowly descend taking the lymph and vascular system with them. So they expect those to be enlarged, they don't expect the groin ones to be. In Dan's case his abdominal & groin lymph nodes were enlarged which is apparently pretty rare. The abdominal ones were so large they actually pushed some of the cancer downwards into the groin.

Based on the size of the largest cluster of lymph nodes (9cm) Dan is considered the worst Stage II you can be (IIC). The only thing worse is metastasis to another organ which would make him a Stage III. Right now Dr. Hoopes feels there is about a 30% chance that there is cancer beyond the abdomen that is microscopic and cant be picked up on CT-Scan. That is why Chemotherapy is the only option. Chemotherapy will be able to knock out the cancer no matter where it is or how small it is.

The pictures below were imaged using Computed Tomography (CT) scans, which is where a large machine moves up and down the body taking many images of horizontal slices of the body. The imager spins 360 degrees around the body taking snapshots from all directions. These images are then combined in software to create a three dimensional model of the area being imaged. The imaging machine captures a great deal of information, and the imaging software is capable of enabling and disabling features, as well as identifying common features. Check pattern recognition, a subtopic of machine learning, which is itself a subtopic of artificial intelligence, which is what Dan is studying for his PhD work.

The scans below are the result of taking a chest/abdomen/pelvis CT-scan. Each image is referenced with a paper doll in the lower left corner of the images, as well as a three dimensional axis reference. The doll has a red nose, red left hand, and blue feet. Thus, the top left image, labeled "Transveral - CT_1" is an image of somewhere in the midsection, viewed from feet to head, with Dan's left hand on the right side of the image. The top right image is a standard frontal scan, slightly turned. The bottom left image is frontal, zoomed to the center abdomen, with some of the additional internal features included. The bottom right image is a view from Dan's right side (not his better side), again of the mid section.

Picture time! Click on them to see them larger. Thanks Dr. Hoopes for the CT-Scan pictures!

Quick explanation of what your seeing.

Top Left: (Transveral) Standard CT-Scan slice of Dan's abdomen. His bones are colored green with his spine in the middle. The dark areas on either side of his spine are his kidneys, the 2 red circles are where his aorta biforcates (splits) into his legs to supply blood, the blue circle is his inferior vena cava which returns blood from his legs back to his heart & lungs. The green circle/blob is his para-arotic lymph nodes. Most of the other things are his intestines.

Bottom Left (Frontal): Same colors as before for artery, veins and lymph. The red line with boxes at the top and bottom are measurement lines. Exceeding 5cm is the break between stages IIb and IIc. From that angle you can see the large lymph is about 5cm and there is a smaller one below it.

Bottom Right (Sagittal): Just another angle from the side, here the lymph node measures the greatest. As you can see it's far longer than the 5cm ruler (actually measured 9cm).

Finally the Top Right is a 3-D model putting all the slices and views into 1 image. If we were in the office you could spin it around and see all sorts of cool stuff. This gives the best idea of the dimensions. All organs except the major vessels & bones are removed. You can see how the lymph (green blob) wraps around and is bulky. The blob here is the cancer in the abdomen.

This is just another larger 3-D model at a slight angle. Normally the green lymph would run along the vessels but much skinnier, this shows another good view of the bulky & large nature of the lymph nodes.

Well that is all from Dr. Hoopes. We met with Dr. Wood this afternoon to talk about how the chemotherapy will work and I will have more information for you again later tonight or tomorrow. Dan and I also have an adoption meeting to go to tonight in Columbus so a ton of stuff going on today.

Livestrong

Dan & I sporting our Livestrong shirts and braclets. Mine is a running shirt for the upcoming 1/2 marathon Heather and I are running in so it has that reflective strip on the front and back.

Thanks to everyone who is reading the blog and who has Dan in their thoughts and prayers.

CT Scan results

Dr. Wood called us today with the result of last Friday's CT Scan. It didn't show any obvious new lymph node involvement. It did however show that Dan has arthritic changes in his spine, 2 cysts on his liver and some emphysema like changes to his lungs. What a mess! Dr. Wood did meet with Dr. Lewis and the Rad/Onc doctor Friday and they all looked at the combined data. They also took the 2 CT scans and made some 3-D models. When they made the models the amount of lymph node involvement was greater than what they could tell from just the standard CT-Scan slices. Based on all this data and all 3 doctors meeting together its looking like Chemotherapy is what the doctors want to do.

We will meet with the Rad/Onc doctor the 22nd at 9:00. Then we meet with Dr. Lewis (chemo doc) at 3:00 that same day. If we are all on the same page Chemo will begin January 28th. Like I mentioned before its 5 consecutive days of IV Chemo then 2 weeks off for 4 cycles. The drugs they are going to use are called Etoposide & Cisplatin. There may be a 3rd drug.

Dan is pretty bummed about this latest turn. He was really hoping for only radiation but we have to do what is best to knock out the cancer. This weekend we went to the sport store and both bought Livestrong shirts and bracelets in support of Lance Armstrong's foundation. It was a pretty simple thing to do but it made Dan feel better and now we are both wearing our bracelets until he is cancer free!

Oncology meeting

We met Dan's Oncologist today, Dr. Wood. It was a somewhat anti-climactic meeting because we didn't get any definite plan.

Dr. Wood reviewed what we know so far - Seminoma, Stage II. The TNM Classification is T2N1M0 based on current data (T2 N1 M0 means the tumor is about 1 to 2 inches in diameter, involving one or more lymph nodes, with no known metastasis). The surgery pathology showed cancer in the right testicle and right lymph node. We did get some more detailed information about the abdominal CT Scan. It showed several enlarged lymph nodes (~1.6cm in size) along the groin and the lymph nodes near the aorta and lymph nodes between the abdomen and back called retroperitoneal lymph nodes. The Chest X-ray didnt show anything. However before the oncologist precedes he wants to get a CT-Scan on the chest to make sure we didnt miss anything from the x-ray. This Scan (done 11-Jan at 2:30) will be the determining factor in the course of treatment.

Should the CT Scan of the chest show any enlarged lymph nodes we will go with IV Chemotherapy. Treatment would be 5 consecutive days of IV Chemo every 3 weeks for 12 weeks (4 total treatment sessions). If the CT Scan is negative treatment would be daily radiation for 6-8 weeks.

Dan is getting the CT-Scan this afternoon. His doctor said he would call him back this afternoon with information. If there is nothing on that scan Dan will meet with the radiation-oncologist next week to get a more detailed plan of action. Either way it goes, radiation or chemo, the treatment will probably not start for a week to allow Dan some time to do Sperm Banking.

While looking for information google just happened to point me to Shands. So I will point it at you guys as well:

http://www.ufscc.ufl.edu/Patient/content.aspx?section=typesofcancer&id=1004

Wish I was back in Gainesville

Significant Lymph Node Involvement

That is what Dr. Lewis called on this Sunday afternoon to tell us. His cancer, has a name and subclass now. Seminoma, Stage II. Seminomas account for about 30-40% of all testicular tumors. These are usually is found in men in their 30s and 40s. The condition is usually localized to the testes, although in about 25% of cases like Dan's it has spread to lymph nodes. So Dan is as I always new him to be, special.

We are to expect a call for oncology appointment soon. Radiation treatment is definite. Chemotherapy is possible. Dr. Lewis said we might do both at the same time, depends on what the Oncologist wants to do. No further surgery is planned.

The cure rate has dropped a tad since our 95% number, but only to 90%. So we are still utterly depressed but hopeful at the same time. Its a weird place to be.

Here is a really informative site I found on radiation treatment: http://tcrc.acor.org/radiation.html Its a short read, but stuffed full of information.

What a week...

One week ago today, life was good. Just had a wonderful Christmas with Heather, Jeff, Cole and Abby. But Dan was having some pain in his groin, thought maybe he had a hernia. He made an appointment to see his PCM Friday morning at 8:00. By noon he still wasn't back and then around 1pm he called me with horrible news. He has testicular cancer, he was to have surgery the following Monday 12/31 and he was scared by how fast the doctors were rushing him around to tests. Just like that, my world felt like it flipped upside down. Thankfully Kathy, Dan's mom, was able to come up for a couple days and help out with both of us and around the house.

So now we are one week out from this news. We are both mentally and physically exhausted. I don't know if it was related to the news or just bad timing but I have the worst cold of my life right now. Since Saturday I have been a constant fountain of mucus with horrible sinus headaches.

Today Dan and I both had medical appointments. He had a follow up CT-Scan just to see if there are any other areas that the cancer might have spread to. The CT results and the pathology reports from Monday's surgery will be reviewed sometime midweek with Dr. Lewis. Its then we will find out if he needs further treatment (surgery, radiation, chemo or perhaps no additional treatment).

My appointment was with the Fertility doctor to have another ultrasound. The cyst on my right ovary is slighty bigger again. Doc said it would continue to grow and it needs to be removed. Wants me to see a Dr. Grohl on base. He will be my new fertility doctor since my current doctor is going into teaching. He said let Dr. Grohl do the surgery because if I let a GYN doc do it they would just remove my ovary and we dont want that. So I have an appointment on base for Monday so they can give me the referral to Dr. Grohl (they wouldnt just refer me on the phone...) Hopefully we can get this surgery done quick so I can get back to training for the half marathon Heather and I are running in April.

The only other update is about our adoption process. Right now we are a few weeks away from the meeting in Columbus that we have to attend. I informed the agency about Dan's cancer. There are lots of medical conditions that they wont place an child into but they said as long as his doctor can write a letter saying he is cancer free and in good medical condition they have no problem going forward with the adoption process. Hopefully those conditions will be met soon! Until then we just wait to be able to start the homestudy, and if our name comes up sooner than Dan is medically cleared they will just let the next in line jump ahead of us until we are ready.