Monday, January 28, 2008

Now Platelets

TUESDAY UPDATE: Adrienne definitely is not having chemo this week. She'll see her doctor on Wednesday afternoon and then she'll get more platelets. Scans will take place next week to see if the chemo is working. Assuming it's working, she'll begin a new lower dose than she's been getting.


While Adrienne's falling/neuropathy appears to be resolving, now she's needing platelets every few days. She got them on Friday and Sunday and we're just hoping they hold out until Thursday when she has no classes again. Even though the platelet transfusion only takes 15 minutes, the whole event takes about 5 hours, from getting blood drawn, receiving results, ordering the platelets, and getting them transfused. Between the falling and low platelets, she's bruised from the waist on down and even has bruises on her foot from wearing flip flops so she's taking plenty of Tylenol.

Needless to say, she probably won't be having chemo this week. Platelets are the last blood cell line (after white cells and red cells) to recover and she's had relatively low platelets for a few months now. The doctor suggested scans earlier to see if the chemo is working and then cutting the dose, which Adrienne is willing to try.

Adrienne's biggest problem right now is getting her frig and microwave, which are in storage. The guy with the key is in New York but he'll be back in Claremont this week. She needs those things so she can prepare food in her dorm, especially when she's tired or not feeling well. With everything else going on, she's still finding time to be quite the social butterfly, catching up with friends who studied off campus last semester as she did.

Thursday, January 24, 2008

Falling...Now What?

Since Tuesday, Adrienne has fallen twice leaving her somewhat bruised and sore. The culprit is peripheral neuropathy from the oxaliplatin. It seems to have started very early, probably due to Adrienne's prior treatment with vinblastine, vincristine, and vinorelbine, all of which cause peripheral neuropathy. In 2003, after her allo transplant, she was barely able to walk and had numerous falls so this is particularly concerning. I called the drug company yesterday and their studies only include people newly diagnosed and, in fact, the person I spoke with said she'd never heard of anyone who had had so much treatment. The long and short of it is that peripheral neuropathy can be debilitating and lasts up to two years in about half the people. Needless to say, it seems unlikely that she'll be able to stay on the oxaliplatin, so there may be no treatment for awhile until another clinical trial is available. We just hope we got enough of the Hodgkin's to give her some breathing room.

In other news, Adrienne's class schedule is set. The best part is she only has classes Monday, Tuesday, and Wednesday, so hopefully her stress level will be minimal and she'll have some free time. She's taking Intro to Media Studies, Leadership in Management, Forensic Psychology, and Ethics in Management. I wish I could go back to college.

Monday, January 21, 2008

Tough Side Effects

Thank you so much to everyone who leaves comments. Adrienne reads them all the time and also makes sure that I what I write here is correct. She's back at college now and classes start on Tuesday so I'm sure life will be hectic before you know it. She isn't going to work this semester so hopefully that will alleviate some of her stress.

The oxaliplatin causes a type of acute neuropathy, specifically extreme sensitivity to cold. Yesterday and today, Adrienne had something called pharyngolaryngeal dysesthesia, which makes it feel like your throat is closing and you can't get air, scary to say the least. After lots of discussion with the doctor, we now know that this is a sensation and it doesn't actually result in a lack of oxygen. Adrienne is going to start taking calcium and magnesium in an effort to stop this side effect. Her nausea has also been bad so we're going to add another antiemetic for the next treatment. After that, she'll have scans so we can see if she's responding. Adrienne says it will be worth the side effects if it's working. The wheezing has stopped so we're hoping that's a good sign.

Adrienne goes in Friday for labs. This is supposed to be a quick visit but she may need platelets or red blood cells so she's prepared to spend the day at City of Hope if necessary. I'll be going to back to take her for the next chemo in two weeks.

Friday, January 18, 2008

Chemo Today

Adrienne's platelets were 69 yesterday, just high enough to get chemo. All of her other counts were good. Most places require that the platelets be over 100 but her doctor said they would do it at 50. I always wondered why they just don't transfuse if platelets are low but I've since learned that low platelets are the first sign of bone marrow damage and they don't want to give chemo unless the marrow is healthy.

Needless to say, Adrienne isn't looking forward to any more chemo. She asks why she has to do this when others her age don't. There's no answer to that so all we can do is be there for her and encourage her. This gets tougher all the time, and no, it isn't fair.

Saturday, January 12, 2008

Religion and Politics

These are two subjects I usually don't discuss because inevitably they result in arguments but this presidential election has my curiousity peaked. Politically, I would say I'm very moderate: fiscally conservative, socially liberal. Unfortunately, sometimes those views are at odds with each other. When we moved to Nevada last year, I registered as an independent voter because, frankly, I'm pretty disgusted with both parties. In California, that means you can't vote in the primary elections but I found out that that Nevada has a caucus where you just show up to vote, pretty cool.

The California primary was always in June so our votes didn't mean much. Plus, the candidate who won that state has always been known for a long time so they didn't visit California a lot despite its large electorate. This year, the presidential candidates are very interested in our little state because of the early caucus. Last night, we had the opportunity to see Barack Obama. We've never been to a campaign event like this and thought it would be interesting and we were not disappointed. Standing in line and waiting for 3 hours wasn't a lot of fun but being there and experiencing our system in action was exciting. I am still undecided in this race but I hope to attend more events like this with other candidates.

Adrienne is feeling good the last few days and is eating better. She was quite weak earlier in the week but her strength is returning. She had labs drawn yesterday and her platelets are quite low, 50,000. The doctor said he hasn't seen platelets that low with this protocol and is concerned that her bone marrow is "tenuous" given her prior treatments. She is supposed to get chemo on Friday but I think we'll check the platelets again here before going to California to make sure she can get her treatment.

Monday, January 07, 2008

Chemo Approved

We just got confirmation that the insurance company authorized Adrienne's chemo. At least that's one less thing to worry about. Adrienne has been very tired and her stomach pain started again today, but otherwise she feels well and is eating.

Saturday, January 05, 2008

Chemo #2

Actually, I don't know how many chemo treatments Adrienne has had in the last 11 years but yesterday she got the second dose of the gemcitabine/oxaliplatin treatment. Early in the day, I was asked to meet with someone in patient financial services. It turns out that the insurance denied the oxaliplatin as nonstandard for Hodgkin's Lymphoma. After lots of phone calls and a quick appeal, it appears that this has been resolved. In the meantime, I signed an IOU saying we would pay if the insurance wouldn't to the tune of $16,000 per treatment. We'll be a bit nervous until we get something in writing from the insurance company but I feel relatively confident that this will be paid. Adrienne's doctor said he almost had the insurance company doctor in tears about her options, plus he provided studies describing the effectiveness of this drug in lymphoma, which they requested. We've had to appeal a few things in the past but nothing this large.

Adrienne has not been feeling well at all since the infusion. We drove from City of Hope back to Nevada last night and she slept most of the time. She was having fevers from the gemcitabine last night but that seems better this morning and she ate a bit of breakfast. Prior to the treatment, she said she was feeling better than she had in months so we hope that this is a good omen that the treatment is working.