Delayed Treatment

Today I went in for the last dose of my second cycle and the doctors refused to treat me. My white count was good enough but my platelets were not. I tried to fight it but they wouldn't have it. This is extremely frustrating and discouraging to me. I've always been told and have read on my own that delaying treatment with testicular cancer is a serious thing because of how fast moving this cancer is compared to other kinds. I think they are treating me like they treat people with those other kinds of cancer and that's unfortunate. Especially because this is likely to happen again on the rest of my cycles. I've e-mailed Dr Einhorn because I know what he has told me about delaying treatments. He doesn't do it in almost every circumstance. We'll see what he has to say. If he's not on my side, I guess I'll just be out of luck.

I know several people who get platelet transfusions, blood transfusions, or white blood cell infusions whenever they need them. I don't understand why I can't get them as well. Oh well, I didn't get to talk to Dr Chandramouli about it so maybe I will do that tomorrow. I'm not ready to give up yet, so I can't let the doctors give up on me either.

On a brighter note, Thanksgiving was great. Karen and I got to have two big dinners and spend lots of time with our families. I had relatively no nausea or lack of appetite so I got to stuff myself good. The Utes and Raiders lost, which was disappointing. Well, that's the word for now.
Sean


EDIT: Dr. Einhorn had this to say:
"We try not to reduce or delay therapy when patients are getting BEP as their initial chemo. However, it is often necessary to alter doses and timing AFTER a patient has gone thru transplant as they have slower recoveries from chemo.I am delighted that your AFP is responding favorably."

I guess I've just got to deal with it and hope that things work out anyways. I'm going to push harder for platelet and red/white blood cell transfusions to help though.

Good News

I started my second cycle today. My blood cell counts still are not where the doctor would like them to be but we're pushing through it anyways. My AFP reading during the first cycle was 88 and after getting it checked today it is 28. So, clearly the treatment is working. I feel pretty lucky about that because only 20% or something like that actually respond to this treatment. I'm one of the lucky ones. Once again it looks like it will just be a matter of keeping the cancer gone.

My hair had been falling out and I finally got around to buzzing it. It's more of a military cut now and my beard is still there for a little while at least. I have a few classes but no job anymore so I'm trying to find stuff to fill my time. I've been having a lot of fun with my new video game, Modern Warfare 2. So is everybody though. Every man aged 12 to 45 is playing as we speak. Karen is just thrilled about it, :-)

Karen has been spending her time doing a lot of photography with her new camera. She is really good and getting even better as she learns stuff about Photoshop. If you need or want a photo shoot just get a hold of her and set something up. She is trying to build up a portfolio.

Overall, things are going well. We just need to figure out a way to keep my blood counts up. My blood marrow has taken so much of a beating over the last couple years that it's getting hard. Thanks for all the support.

This Week

Well, I'm off treatment this week. It's a much needed break because my blood counts have gotten extremely low. Even with getting Neupogen shots to boost the white count, it's still almost zero. I still don't have a readout on how the cancer is responding to the treatment. Hopefully next week or the week after I will know.

I've been really weak and fatigued lately. It is hard to move around and I wear out really quickly. I also had a pretty high fever today and they were worried about that. I think a combination of Loritab and antibiotics has broken my fever for the night at least. I got the regular flu shot and I'll need to get the H1N1 shot in a few weeks.

I hope things get a little better. My blood counts are taking too much of a beating from this chemotherapy. Anyways, thanks for the continued support.
Love, Sean

Taxol/Gemzar Cycle 1 Treatment 3

Sean had his 3rd treatment of his first cycle last Friday, October 30. I wasn't able to be there with him but he said it basically went the same as the others. He didn't meet with Dr. Chandramouli that day or with Rick though. His white blood cell counts were up due to the neupogen shots he had had during the week and he was able to go out with Kathy (his mom) after his treatment and get lunch and visit. His platelet counts were low which causes him a good deal of fatigue but they weren't low enough for him to receive a blood transfusion.

Friday night he felt pretty sick and needed to take several doses of his medications to help him feel better enough to sleep. He was up for a bit during the night and I was able to get up with him and make sure he got his medications. He did really well on Saturday though. He was able to be out shopping with me and we went to the Utes game that night as well. Sunday he was back to not feeling too well and had to take his meds throughout the day then too. Yesterday was like Sunday--he was able to get things done but wasn't feeling the best. Today he's been very tired due to his platelets being low still and Dr. Chandramouli asked him to come in today for a CBC panel. His white blood cell counts are back down which means his immune system is compromised again and he has had a low grade fever of around 99.1-99.4. Dr. Chandramouli asked him to start taking his levaquin antibiotic today to help fight off his fever and any infection he may have, but he thinks Sean's fatigue is caused mainly by the chemo and being somewhat low on his red blood cell counts. The doctor told me to watch for any changes in Sean's breathing (especially with all of the flu viruses going around these days--although he did get his seasonal flu shot this week) and if anything gets worse we'll need to take him to the ER. Right now he's sleeping and stable so hopefully he'll be able to get some rest this evening. He is scheduled to see Dr. Miller on Thursday who is the pain/fatigue management specialist within Dr. Chandramouli's group so maybe he can help figure out how to get Sean through the next 5 cycles. Sean's off of chemo this week--it's his break week, but he will meet with Rick on Friday for a follow up office visit to see how he's doing.

I'm very grateful for the doctors and other medical providers that are working with Sean as well as for everyone's continued prayers and encouragement. It feels like we're dealing with a lot here and we are but we get through it one day at a time. I'll try and post again once I have enough to update everyone on but for now things seem to be under control. We'll see how this evening going and go from there I guess! Thanks again for all of the love and prayers. We really need it...

Karen

P.S. Sean's hair started to fall out on Sunday but he hasn't shaved his head yet. It's going to be extra hard to part with the curls he's had. :(

Taxol/Gemzar Cycle 1 Treatment 2

Today is Sean's 2nd treatment of the taxol/gemzar. He's currently passed out asleep from all the benadryl he had as a pre-med....

Last week Sean did pretty well after his 1st treatment. He experienced some aches associated with the taxol but was able to take some of his pain medication to deal with that. He has a slightly unpleasant taste in his mouth, no hair loss yet, and minimal fatigue. His appetite has been normal this past week and he's been able to keep up pretty well with school and other activities. His spirits are still high and he's pushing through.

We met with Dr. Chandramouli in the office today before Sean started his treatment. He said that he took a look at the PET scan Sean had and was able to see the "hot spots", those being the active tumors within Sean's body. He said that he plans to repeat a scan (whether it's CT or PET I'm not sure) after Sean's 2nd cycle, so toward the end of November. This, along with weekly AFP checks, will help determine how Sean is responding to this treatment. The goal is to complete 6 cycles which, if everything goes smoothly and nothing has to be delayed, would put him finishing around April, 2010.

The concern right now is Sean's white bloodcell counts, which are low. He's not neutropenic like he was when he was on the high-dose chemo but he is more susceptible to infection than a normal healthy person his age. He just needs to be careful about exposure to sick people and will be getting both the seasonal and H1N1 flu vaccinations. He cannot have the nasal spray H1N1 vaccination, however, because that is the active-virus form which cannot be introduced into the body of someone with a compromised immune system--obviously. Having a low white blood cell count can affect whether or not he is able to undergo the chemotherapy treatments and Dr. Chandramouli said he'd like to push him through today's treatment. The plan is to have Sean come in for either neupogen or nulasta shots (I can't remember which drug he's getting) Monday-Thursday of next week. These shots will help boost his white bloodcell counts and help keep his body up and running against infections. We asked what would happen if his white cell counts got too low for him to do treatments and Dr. Chandramouli said he'd have to delay the treatments until he is strong enough to resume but hopefully with the shots we won't have to delay anything.

**Again--Sean is allowed to be out and about in public and do normal day to day activities. I have had the seasonal flu vaccination already this season to ensure I don't get sick and pass it along to him.

Sean will have his 3rd treatment for cycle 1 next Friday, October 30 and will not be meeting with a provider that day. He will be meeting with Rick again though, during his off week, for a follow up visit to see how he's doing. He had blood drawn today and they are going to check on his AFP levels which should be in on Tuesday of next week. We'll know after about 2 cycles whether or not he's responding to treatment. He was able to reach Dr. Einhorn via email who told Sean that he's still hopeful of a cure with this treatment he's going through so that's good news for us.

So far we're both doing okay. We aren't really in need of anything except prayers right now. If there is a need for anything though, we'll let everyone know. We really appreicate all the support we've had from all of our friends, family, and strangers over the last 2 years and we're grateful that the support continues.

Karen

Taxol/Gemzar Chemo Cycle 1 Treatment 1

Sean had his port placed this morning at IMC. Everything went smoothly with that. For those of you who don't know what a port is, it's a device placed beneath his skin in his chest that allows IV access through it so that he doesn't have to endure needlepricks for IV's in his arms and hands. This is beneficial because chemotherapy can cause damage to veins making it extremely hard to start an IV....and Sean's had trouble with that in the past so the port will definitely be a good thing throughout his treatment.

We met with Rick Hansen, Dr. Chandramouli's PA this morning. He gave Sean some prescriptions for anti nausea and pain medications to help him deal with the side effects of the chemo that are sure to come. He told us that Sean will be doing the taxol/gemzar treatments 1 day a week for 3 weeks, with a 1 week break after, which equals 1 cycle. He will do 4 cycles (16 weeks) of treatment, so long as he is responsive to the drugs. They will run labs each time he comes in for chemotherapy to determine if his cancer is responding. Rick said that Sean will most likely lose his hair again, experiencing the same sorts of nausea/vomiting that he had in the past, have a bad taste in his mouth again (which really sucks because the holidays are coming up and Sean really likes the food), and the overall sick feelings that come along with doing treatments like this. Rick said that the gemzar lowers patients blood counts quite significantly, so while he won't be neutropenic like he was when he had his transplants, he will still need to stay away from anyone who has a contagious illness and will need to be aware of overall hygiene. Rick gave us a prescription for an antibiotic to take in case Sean develops a fever that goes above 100.4 degrees. (Note: Sean will still be out and about in public, and has been told by Rick to get both the seasonal and H1N1 flu vaccinations). The plan is to move Sean's treatments to Friday's after this week as he has a full day of classes normally on Wednesdays, meaning that Sean's next chemotherapy treatment will be on October 23. We expect to meet with Dr. Chandramouli at that time as well for another follow up visit as he was out of the office this week.

Sean's chemo treatments will last between 4-5 hours each time they are done because the taxol chemo requires a lot of premedications in order to allow the body to tolerate the poison. I'm not sure what my plan is right now on whether or not I'll be with him during treatments so for now we'll plan on seeing how he copes with the side effects and whether or not he'll be able to drive himself to and from the cancer center.

For now Sean is doing well in the sense that he's staying positive, doesn't feel sick, and is ready to go through all of this again. As his treatments go on, things will get harder and harder but we know that we'll make it through this just like everything else we've been through. We know that this is his last real shot at a full cure so we're doubling up on hope. For now, please keep praying for us. We'll keep everyone updated with Sean's progress and condition. Thanks


Karen

A Study On My Chemo Regimen

http://annonc.oxfordjournals.org/cgi/content/abstract/15/3/493

Check that address out for an interesting read. The regimen I am on is only slightly different and it's considered a little bit more effective. I think I am a prime candidate for this kind of chemotherapy regimen. I've read that people who can achieve remissions from platinum based chemotherapies have greater results when taking Gemzar/Taxol. My body is extremely responsive to platinum based chemo so I could very well be one of the people that responds to this treatment.

I remain hopeful.

EDIT: I updated the slideshow with some different photos.