Wednesday, June 30, 2010

So, looks like Dad is doing great! His last bone marrow biopsy showed some cancer cells still hanging around, so he got another dose of chemo and will have another on Monday. But, his blood counts are bouncing back really fast! He's had a couple of shots of Neupagen which is helping restore those white cells the chemo obliterated. And, he's no longer neutropenic which is great. No more strict conditions on his food and activities.

He talked to Dr. Martin this week who is the head Leukemia doctor there, and said that he should be able to go home early next week! He will get a week or more at home where he'll be a bit more tired than his normal self, but still able to do pretty much whatever he wants as long as it's not strenuous (this means NO work of any kind). He mentioned to me today that he'll be back to UCSF on the 15th which gives him about 10 days at home before returning for another 3 weeks of treatments.

His weight is hanging around at 217, so no more rapid weight loss which is good, but bums him out, he was hoping for a miracle diet!!

His attitude is greatly improved. He even started calling himself P.L.C.P. or, Poor Little Cancer Patient and Chemo-Sabe. At least he still has a sense of humor! See the attached pictures of his new shirt for proof.

Jen

Friday, June 25, 2010

Dad's bloodcounts have dropped to next to nothing as expected. He has virtually no white cells left and his platelets are low. They gave him platelets yesterday and they keep his red cells up to a decent level with transfusions as needed. They take blood samples daily to keep on top of his counts and give him what he needs.

As of yesterday, his weight was down to 217 from 270 a month or two ago. Becky thinks he looks skinny, but she sees him everyday. I think he just looks like dad at his normal weight. I don't think anyone else would think much of his weight loss, but too much more and he might start looking thin... I think he's started losing some hair, but since we shaved his head it's a bit harder to tell. I won't see him until he gets home since I have another head cold and I'll be out of town next weekend. I'm not looking forward to seeing him without eyebrows. That's always the telltale cancer patient sign, and it's yucky looking. I might bring an eyebrow pencil and draw them in for him!

Great news - his spinal fluid came back clear of cancer which is great. He'll still get 5 more lumbar punctures with chemo to ensure it stays that way. He has gotten a nasty spinal headache that hurts every time he stands up. That's from the spinal fluid leaking out where they punctured him. It takes days to weeks for that to heal and the headache to go away. By that time, he'll have another puncture. Not great, but he takes pain meds when he needs to. Also, the Philadelphia chromosome test came back NEGATIVE! Yippee! This greatly reduces any need for a bone marrow transplant.

He'll be getting another bone marrow biopsy today which should tell them if the treatments are working and if he's in remission. Not everyone is by this point, but they should see a drastic reduction in the cancer cells. The results of that are usually in the same day I think, so we should have another update soon.

Jen

Sunday, June 20, 2010

Sorry I haven't sent an update this week, but it's been very uneventful. He finished his first 4 days of chemo and had his first of 6 lumbar punctures. Today, he will receive another dose of chemo and then he won't have anything this week until Friday when they do another bone marrow biopsy. We're hoping that this biopsy shows he is in remission, but only about a third of people are at this point. If he is not, he gets another dose of chemo. The preliminary results from the lumbar puncture show no cancer in his spinal fluid, but the final results should be in tomorrow.

His blood counts are steadily dropping and he should be neutropenic by tomorrow. (This is where he's super susceptible to infection and is kinda quarantined here in the hospital.)

We also got a written schedule of the chemo treatments. At least he knows what's coming up and how long he'll be here each time. It's a loose, generic schedule but it gives good information on the type of drugs he'll be taking and how long each session lasts.

He's had a hard time adjusting to his new life here, and was downright miserable and surly this morning. He's bored and a bit depressed and just wants out. He's determined to stay, but not by much. The only saving grace this morning was the Fathers Day card I gave him from Vicki. She wrote a very nice letter inside, and it was EXACTLY what he needed to hear today. It was amazing. He cried, then made me read it out loud and I cried too. Since then, he's been quite a bit better. I left the card by his bedside so he can read it when he gets down. (Thanks, Vic, sometimes, you know just the right thing to say at just the right time. I was having a hard time coping this morning and couldn't seem to say what he needed to hear, but you hit it. I really appreciate it. So does dad.)

I'm leaving this afternoon to head home to spend some time with Jason on Fathers Day and Becky won't be back until late tomorrow afternoon, so I'm hoping he handles his alone time well.

Please don't forget to call him today to wish him a Happy Fathers Day. He really likes to hear from everybody. He told me to let people know they can call anytime, he always has his phone near him and he's got plenty of time to talk. If he's busy, he won't answer and he'll call you back. But, the more people who call, the better. Just let him know you're thinking of him and wishing him the best. He's going to have a really boring, depressing week, so please call, it really will brighten his days.

Jen

Sunday, June 13, 2010

Dr. Martin was just here and gave us a TON of information. Here's more details than you possibly need, but I typed furiously as he spoke, so I think I got it all.

Diagnosis: ALL (Acute Lymphocytic Leukemia)

The treatments are sporadic, so I'll explain. There are 3 different schedules (I, II, III below) consisting of a total of 7 months (A,B,C are each a month long).

I     A, B, C
II    A, B, C
III           C

A and B cycles: 3 1/2 weeks in hospital
C cycles: 4 days in 10 days out, 4 days in 10 days out.

We are currently in schedule I A.

He will be in the hospital for a total of about 4 1/2 out of 7 months. All here at UCSF.

The actual treatment/drugs are as follows (this is very confusing and I'm sure I spelled them all wrong, so bear with me with the scattered thoughts)

Initial Therapy: 3 medicines on days 1, 2, 3, 4, 8, 15, 22
Dexzamethysone, (steroid) starts today for the next 4 days which should help with the bone pain and reduce his need for pain meds (side effects: water weight, abnormal energy, lack of sleep, with a crash on 5th day where he'll feel tired
Vinchristine (via IV) weekly for 4 weeks (side effects: tingling in fingers/toes and constipation)
Dinarubicin knocks off cells that grow fast and starts tomorrow for 3 days after echocardiogram (side effects: can effect the way heart pumps)

Those will put him into "remission" by the end of his stay this month. Today is day 1, he'll be done by day 28, and back here for the next round by day 35.

2 weeks from tomorrow another bone marrow biopsy will be done to see if the cancer cleared out. They don't want to see ANY cancer with that biopsy.

He will be on a maintenance therapy after the 7 months of treatment which will be a daily regimen of pills which will end at about the 2 1/2 year mark.

ALL tends to hide in the spinal fluid / brain stem so he will need lumbar punctures six times over the next 3 months and chemo pumped directly into the spinal fluid. First spinal will be this week.

This plan can change depending on the results and how he handles chemo. There will also be a chromosome test to tell if he has the Philadelphia chromosome (50% chance) which will change things and will need a possible bone marrow transplant if he has it. The best donors are his siblings who have the same mother/father. If he does in fact need a bone marrow transplant, it is very uneventful. A donor gives blood and it goes into a drip line in his PICC line. It's that easy. No surgeries, no hospitalization. A transplant comes with it's own side effects/issues which I'll explain if it comes down to it.

Other issues are his blood counts. There are 4 different levels they look for (WBC, ANC, RBC, PLT) and when certain numbers drop, they have to either give him blood transfusions (RBC) or platelets (PLT). When his ANC numbers drop he goes into a state called "neutropenic" which means he has little to no white cells left (this will happen in the first couple of days after starting chemo). This is when things get a little more serious as he is very susceptible to infection. He will no longer be able to eat any outside foods and anyone who is sick must stay away. They can give him shots of Neupagen which can help booster his white cell count to help fight off infection.

I think that's all the information that I have at this time. Any questions??? Hit me while I'm hot and I can remember!

Jen

Saturday, June 12, 2010 #2

Dr. just left a bit ago, here's what he had to say:

We'll get the final diagnosis tonight or tomorrow morning, but he's thinking ALL, not AML. The chemo treatments are very different, but he was 99% sure that chemo will start tomorrow.

Dad needs to go into remission before he leaves, but most patients (90%) go into "remission" before they leave. They consider remission to be a lowering of the cancer cells, not a total removal. A total removal off all cancer is considered cured, and with ALL there is a 90% chance of being cured, and with AML there is a 75-80% chance.

If it is ALL, he will need 7-8 more months of treatment after leaving here, and with AML he will need 6 months more treatment. Follow up treatments will be here at UCSF and he will be admitted each time. Details of follow up visits will be determined tomorrow.

They will also be doing a chromosome test that comes back in 2 weeks, and I can't remember why they're doing this, or the echo cardiogram of his heart, but I'm assuming it's really just for more information for chemo.

He will be here at UCSF for the next month, and depending on the type of leukemia he has, it will either be a lot up front and then recovery for the rest of the time (AML), or ALL which spreads it out during the month.

The Dr. should be back tomorrow afternoon with all the rest of the answers.

If you have any questions you want me to ask the nice Dr. - now would be the time! We don't get to see this head guy very often, so I'd like to get as many answers now as we can.

Oh, and there is free WiFi here in the hospital, so feel free to send me emails. Becky will hopefully be bringing a laptop for dad to use too, and maybe we can grab his Skype camera so we he can talk to those who have it.

Jen

Saturday, June 12, 2010

He is still in lots of pain, and is very anxious to get the chemo started. We just need to wait for the Dr. to say which kind and if there will be more tests needed before he starts. Some of the chemos require additional tests on the heart and other organs to make sure his body can handle it, but we won't know until the Dr. gets here.

So, now we're waiting. He's in good spirits, lethargic, slurs a bit, and keeps dozing off in the middle of conversations, but it's quite funny. He just asked me to lay with him and promptly fell asleep, then woke up and said, 'Beechwood in 93, we had a lot of turkey burgers, remember that? We got them from...' and then fell asleep. I have no idea why he was talking about that, but apparently it was important at the time.

He also will stop, look at us and say, 'I love dilaudid.'

He's got a great nurse today, Elaine, who just brought him Oxycodone with a Miralax chaser, and she sang the diarrhea song, complete with 'when you're sliding into third and you feel a juicy turd, diarrhea, diarrhea'. She's awesome. Too bad it's her last day! He loves her.

Dr's. here. Gotta go!

Jen

Friday, June 11, 2010

I went to see Dad today before they transferred him down to UCSF (He should be there around 9 p.m. or so). He is in good spirits and was actually quite his normal self, and he has every belief that the Dr.'s at UCSF will be able to work their magic and get him home in the next month, Leukemia free. They said he's very healthy otherwise and has a great chance to beat this being so "young" and healthy. His blood pressure was even in the healthy range the whole time! Impressive considering the situation and the news he just received.

He was really pale and anemic, but they were giving him a blood transfusion and he was starting to get some color back in his face. They have him on some good painkillers that are taking away a lot of the muscle/bone pain that he's been having for months. He was really weak, but was able to get up and use the bathroom by himself and change into his regular clothes before the ambulance arrived to transport him to the hospital.

Here's a website I found with some good information on his type of leukemia. It is Acute Aggressive Leukemia, and it sounds like he has AML only due to the age considerations, but I'll find out for sure. Although it is aggressive, it is a curable variety which is great news. I'm not sure of the treatment plan either except they are starting chemotherapy tonight and he should be there for a month. I'm not sure if that's it, or if he'll have some sort of followup treatments. Once again, I'll find out the details from someone with an M.D. behind their name!

http://www.canceranswers.com/Acute.Leukemia.html

(Craig might be able to send out some better links.)

Here's his info at UCSF:

Unit 11 Long

RM 1153

(415) 353-1383 begin_of_the_skype_highlighting              (415) 353-1383      end_of_the_skype_highlighting (nurses station on his floor)

His cell #: 530-591-3416 begin_of_the_skype_highlighting              530-591-3416      end_of_the_skype_highlighting

Becky's cell #: 805-598-0730 begin_of_the_skype_highlighting              805-598-0730      end_of_the_skype_highlighting

I'll be heading down tomorrow to see him and probably every weekend. I'll send updates after each visit to let you know how he's doing.

Jen