Met with specialist today

We met with Lance Armstrong's doc today and we both feel a lot better.

Kel's exact dictation for this was "my husband feels some relief, even though he is in a lot of pain, he feels a lot better. The end.

For those who want more specifics:

The plan has changed. It will no longer be the tandem transplant, for now. Kel will undergo what is called 'salvage surgery' in 2-3 weeks. The will remove the main mass, and all of the surrounding lymph nodes on that side. It will be a long surgery (4-6 h) and he will be in the hospital for ~ 5 days. This will all be in Indianapolis with the world's best testicular cancer team.

Just doing the surgery has about a 30-40% cure rate, although the surgeon anecdotally believes it to be considerably higher with single site disease, like Kel has. Should it not be curative, the tandem transplant is still available. But at this point with chemoresistant disease, there is a better indication for surgery (which Kel has wanted since he first learned that the initial chemo wasn't curative - 'just get this damn thing outta me').

A confident and wonderful oncology team DO NOT SUCK!

Thanks,

T

Indianapolis

Sorry I haven't written in a few days - it has been a bit of a whirlwind since we stopped the chemotherapy and opted instead to see the expert in testicular cancer - the doc who treated Lance Armstrong.

I emailed Dr. E last weekend, gave him a brief synopsis of Kel's case, he recommended stopping chemo and we see him tomorrow morning at 9:30 am for a consultation. What we anticipate is escalating treatment to the tandem transplant (they will harvest Kel's own blood cells, then go through the following cycle twice: high dose chemo, would be lethal myelosuppression, then rescue by giving back his blood. We will know the cure rates, expected outcome, etc tomorrow.

We are not yet sure where this therapy will take place - I have heard some concerning reports about the BMT team in Tucson, so it may be better to do it in Indy. We will see what Dr. E recommends tomorrow (oncologist in Tucson suggested doing the therapy in Indy might be a good idea).

Just a quick report, and I will write more tomorrow night after the meeting. We are taking advantage of being in Indy to have dinner with an old friend tomorrow, and hopefully seeing another friend in the afternoon, so it will be a busy day too, then back home on Friday. I leave again on Sunday to visit Mississippi for a week. Whew - it is going to be tiring!

No Sux tonight, doesn't suck - definitely being in Indianapolis and moving one step closer to Kel kicking his damn cancer's butt!

Night for now,

T

New plan # .... I lost count

I was in contact, via email, with the expert in Indy (the doc who treated Lance Armstrong, btw) and he told us to stop chemo now and get to see him this week. So that is what we are working on. Kel will be escalated to the tandem transplant next, hopefully to start this month.

Thanks,

Tracy

A quick report

Kel:

Day 3 of this cycle started today. Kel is handling it well overall, just the same fatigue. His is quite anemic, so his energy level is correspondingly low. The doc even talked today about doing a blood infusion to help with that, but voiced some minor concerns about risks and side effects associated with that. I wasn't there, so Kel decided to wait, and I didn't see the doc to ask him about it. We will see tomorrow.

He has also gained 7-8 lbs over the last 2 days from all of the fluid they are giving him. His kidneys are functioning ok (per this morning's bloodwork), and he will get a diuretic after he is done.

Kel is not yet immune supressed (meaning his white blood cell counts were find, even on the high end), but that should happen by the end of this infusion time. His hair is falling out again, which is strangely comforting because he knows at least the drugs are getting in and doing something.

He may ask for another marker count before he leaves the hospital, but not sure yet.

We haven't gotten to see him much today - he's been sleeping, and David is only not restless in the hospital room for a certain amount of time. So we went after karate this morning, and then back home for lunch and a nap. Came back ~4 and were home for supper since Kel was sleeping). Tomorrow would be our normal Sunday morning family breakfast out, so I think we will pick it up and bring breakfast to Kel.

I am doing a little better over the last two days. I am less angry, less sad, more focused on the day to day. I do miss Kel a lot, since I haven't been able to spend time with him much - he sleeps a lot at night and I don't want to disturb him, plus David ... otherwise we are just trucking along.

We were sad to say goodbye to Rachel and Butch this morning. It was a great visit, and I am so glad they were here to spend good days with Kel, sorry they were here for all of the stressing, and grateful for their love and support.

I am beat down, more emotionally tired than physically, so I am going to cheat to end tonight:

Cancer Sux.

My good friend Christy found out on the year anniversary of her 'remission', that her acute leukemia is not gone and she is rushing around to get things set up for an urgent bone marrow transplant (autologous, meaning from someone else, as opposed to the one that Kel will likely undergo, twice, which is him donating his own marrow/stem cells). She is running around trying to set up her daughter's 4th (I think) birthday party, the impending arrival of her first granddaughter, and anything else urgent. Her spirit is beautiful, and the news is crushing ...

Cancer really sux.

With much (tired) love,

T

It's all quiet on the western front

It is a quiet night here in the Brooks house. Rachel and Butch are asleep, exhausted from the emotional toll and unknowns this week. Kel is in the hospital getting chemo, but he was too tired for a visit from us tonight, so we haven't seen him since ~3pm, and David didn't see Daddy all day.

It is just me and Saja in my bed, and a big empty space where I wish I could hold on to Kel.

Ooops, should have warned you ... not doing well tonight, gonna be all gloomy and depressing, this would be the 'venting and whining' section for today's post. I did post earlier today (below) about how Kel is and the plan.

So back to all quiet on the western front ... it is quiet, just the fan is making noise. And all I want to do is scream from the roof top at the top of my lungs:

I

HATE

Scratch that ....

I

F*#ing

HATE

Cancer

Really, Really, Really hate it. Stubborn stupid ignorant angry cancer.

Not responding to chemo cancer. Not acting like it should cancer. Not dying cancer.

I hate you, cancer.

Ok, writing that helped, cause screaming would wake up the house, and no one needs that.

So, as you can probably tell, not a happy day. Kel is getting his second round of salvage therapy today/over the next 5 days because there is little downside (you know ... other than the crappy side effects of chemo. I am chastising myself, because really, how can I call that little downside??) to it. We have to wait until later in the month to get a consultation with the world's expert in Indianapolis, need to be sure that the chemo isn't doing anything before moving onto the tandem transplant, and not doing anything will ensure that the tumor grows. So ... we (and by we, I mean Kel) are trying another round. Why the f#$k not?

The good side ... David was good at school, although still complaining of an icky tummy :( He had his second swim class and other than being stubborn (proclaiming, 'no, I don't want to' when asked to put his face under water) did well. He had a good night, watched a Scooby Doo and went to bed late.

Kel started chemo at ~2 or 2:30, finally, and had a nice visit with some of TPDs finest, in shifts, before that. Please, for those who want, really, visit him as often as you can or want. It is good for his spirits and his boredom.

I am in a crappy mood tonight, missing Kel, hating cancer, and struggling to contain it all to be completely honest, so I will end with a 'Doesn't suck", because Kel told me I always have to end on a sux/not sux note and there was already enough 'sux' above.

Hmmmmm, what doesn't suck?

Ok, when I step out of my "down and all about sucking cancer" world that is easy ...

Loving, supportive, try to do whatever we need to help family and friends DON'T suck. We are so fortunate to be surrounded both locally and around the country and world by so many who care and want to be here for Kel and David and I, and I am grateful. Kel's best friend is back in NY and told me he just wants to jump in his truck and start driving here tonight (we love you, Tim), but is already planning a trip for later this month and I told him to stick with his plan. Kel's friends at work are so wonderful in offering to help with whatever we need. My friends help so much with playdates and meals and ears to listen and shoulders to lean on (virtual and physical all included there). And Kel's and my families ... wow, I don't know what we would do without the love and support that pours out of them all.

So I will back out of my bad mood just long enough to say:

Thank you.

Now I crawl back into my pit ... at least for tonight.

T

New plan/ongoings

Brief report, here is the new plan:

Kel is going to get this second round of chemo starting today (at some point), even with the indication that it isn't working (biomarkers increased post first treatment). The thought process here is that we have to wait for the next parts (below), and doing nothing has no benefit. The chemo may not do any good (i.e. his tumor may not respond), but the harm is minimal, so it is worth the small possibility of a benefit.

In the meantime, we will be working to set up the tandem transplant to be done here, assuming we need to escalate.

Also, we are traveling to Indianapolis later this month to consult with the world's expert, Dr. Einhorn, about what is the best course of action for this stubborn cancer.

So overall the lack of response is worrisome, we are jumping on the next step and keeping spirits as high as they can be (but honestly barely treading water).

For those in Tucson, Kel is in UMC in 3NW, text he or I for the room number. His direct phone # is 520-694-3156. Visitors are welcome (and appreciated), call or text as much as you like.

All our love,

Tracy

Short report

Yesterday Kel's oncologist didn't have any biomarker numbers due to the snafu at the center, but told us he would bet us 'bunches of money' that they will be down. He called this morning and ...

they went up.

Then he went on to say that this was not a concern, that it is more important what happens at the end of the second cycle, but we are not convinced. There is evidence for a surge in the biomarkers with the first round of chemo, but that happens at day 5 right after he infusion (which did with Kel, his #s went from 49 just before therapy started to 98 by the end of that week), but then a normal half life is expected and the #s should be down 2 weeks later. I did some extensive searching today and there is no evidence for or mention of a prolonged 'surge' and elevated #s being a good thing.

But Kel checked into the hospital today anyway. They aren't starting chemo tonight since he didn't check in until 6:30 pm, and I will be there tomorrow morning when his oncologist 'rounds' to go over this. As far as we can tell, the increasing #s means that he is not responding to the new VIP chemo, and that it is time for either the tandem transplant or surgery.

Not a good day.

Cancer Sux.

(on that Rachel, Butch and I were all wearing our t-shirts today out at Walgreen's after leaving Kel at the hospital and someone asked about them and I gave him a card to find the website!).

Needing some serious sleep,

T