Luke - High Maintenance Defined

After +80 round trips to MDA, 20 units of blood, 4 units of platelets, 17 nights in the hospital and enduring over 200 needle sticks Luke has reached the maintenance phase of his treatment. Yahoo!

After getting blood last week Luke rebounded pretty well. Going to MDA today he was hoping to get another week off with no chemo and seemed disappointed that all blood count parameters were above the levels necessary to begin maintenance.

The objective of maintenance is to kill off any remaining cancer cells and not let the cancer establish another foothold as it did in January. He was told today that maintenance will last 30 months. It was previously thought that maintenance was only 24 months, but 24 months is for the female species. For reasons Dr. Wells said are not understood the male of the species does better being on maintenance for 30 to 36 months.

Today Luke's introduction to maintenance was methotrexate in the spine, vincristine IV and the start of five days of steroids. Over the next four weeks he will be taking mercaptopurine and methotrexate orally. Luke will be learning as he goes forward what maintenance will involve. The medications and dosages change throughout maintenance.

Dr Wells mission in life now is to keep Luke's bone marrow on the edge. He wants to keep the chemo at a level that will kill any remaining cancer cells while not compromising healthy cells. Luke will be getting his counts checked every other week. If the chemo dose he is receiving to too high, it gets reduced and blood checked again in two weeks. Dr. Wells expects it will take 3 months to get the chemo dose right as the starting dose ends up being too high for 75% of the patients that start maintenance.

Dr Wells is looking into who he knows in Miami that can attend to Luke when he returns school in January. If he is runs a fever Luke needs to get to the doc, no messing around. He needs to be compliant with the meds. His port will stay in place for the next few years. Will have to keep an eye on that for infections but that should not be a problem.

Luke has reached a major milestone but still has a distance to travel but he his looking forward, not back. To be honest there will still be a lot of trepidation here each time Luke has his blood drawn over the next 30 months and beyond, but we are confident the worst is behind him and he can start functioning and enjoying life as a college student in January.

One thing everyone can do to help us out is to keep Luke compliant on his meds. In that regard, anytime you email or talk to Luke over the next 2 1/2 years please begin the email, text message or conversation with "Luke have you taken your meds today".

Finally, for Luke, Gayle, Beth, Kendall, Kate and me, I want to thank everyone for your prayers, thoughts and support over the past 8 months. The cards, meals on wheels, books, models, gas cards, cookies, hats, movies and on and on were invaluable. The blood drive and concert in May was a great time and a day that Luke and his family will not forget.

God bless you all and we look forward to seeing many of you on November 7th.

Dave

P.S. A lot of blood donors are still needed for the 7th!!!!

Leukemia Sucks - September 16

Leukemia sucks! Thought the last day of erwina and maintenance phase in sight was going to be be better than this. Luke feels and looks drained. He is pale, tired and having episodes of nausea. No appetite and stomach has a constant rumble.

Came to clinic today for what we thought would be the last erwina harpooning. Counts showed hemoglobin was down so he will have an all dayer getting two units of blood and erwinia. Short term benefit is the blood comes with IV benadryl which will put him to sleep for the afternoon.

After the blood and the erwinia today, Luke is off all chemo until his counts come back. He then starts maintenance. Hope getting the blood today will accelerate the bounce back of his hemoglobin and pick up in his energy level.

Learning some about the maintenance phase. The first three months of maintenance are the same; steroids for five days, one intravenous dose of vincristine each month, daily mercaptopurine and methotrexate orally once a week. Methotrexate is given intrathecally once every three months during the first year of maintenance. We were told the start of maintenance can be rough. After all the chemo the bone marrow was described as being "tired" and sometimes the chemo doses need to be determined by trial and error as the calculated dose drops counts too much.

The November 7th blood drive is moving forward. STILL NEED DONORS ESPECIALLY LATE IN THE DAY. If you are not on the donor email list be aware blood donors will be entered into a drawing for a 32" VIZIO FHDTV. The concert the evening of the blood drive is a go, just hoping its a nice fall evening.

Monday

OK weekend for Luke. Two units of blood on Wednesday were followed by one unit of platelets on Friday. Also got the erwinia harpoon Friday.

He spent at lot of time on the couch this week but signs of recovery are there (guitar and model building picking up). He seems to be at the point were the cytoxan is out of his system and with that the case his counts will start to come back up. Hoping to see some white cells show up this week in his count so exposure to infection is not such a worry.

Next trip to MDA is Wednesday for erwinia. He is down to four more doses of erwinia and one dose of vincristine. After that he waits 2-4 weeks for his counts to fully recover before starting maintenance for two years. The start of maintenance involves a trial and error period of several weeks to get the dosages right but he has been told the chemo going forward will not be as toxic. Yahoo!

Wednesday September 2

After receiving 5 units of red cells and 1 unit of platelets over the past week Luke is feeling better. Our instructions after being discharged from hospital Sunday were to go to the clinic on Tuesday and have blood drawn. We did and his platelets were low so he was recharged with a unit of platelets yesterday.

Red cells and platelets looked ok today so Luke he is getting the scheduled chemo of vincristine (via IV) and erwinia (via leg harpoon). He will get 5 more injections of the erwinia and one more dose of vincristine. After that they will let him recover after which he will be put on maintenance. The time between the end of this phase of chemo and the start of maintenance will be any where from 1 to 4 weeks, just depends on how fast his system recovers.

White cell count and ANC are still non-existent so he needs to be watched for infections. Expect that will be the case for another 7 to 14 days.

Blood drive is a go for November 7. If you not are not on email notice list and want to be put on let me know (dmnovick@earthlink.net) and I'll set that you get the information.