Next Steps in Course #1

I have been feeling stronger each week, and expect this week to be my best since my hospitalization back in March. . . just in time to start the next chemo drug! I’m scheduled for labs this Friday. May 11th will be my 28th day after being discharged from the hospital, so at bedtime on Sunday I’ll begin taking temozolomide (temodar, TMZ) for 21 days with the last dose on May 31st. I’ll also take ondansetron 30-60 minutes prior to taking the TMZ and again in the morning to offset the nausea, a common side effect. Other common side effects include loss of appetite, constipation, tiredness, weakness, and headache.Temporary hair loss is also possible. If the nausea can be controlled, I think I’ll be able to handle the rest. After May 31st I’ll get 2 weeks off and then get my next PET/CT scan on June 16th. Fingers and toes crossed for improved results! The date tentatively set for the port placement, oncology visit, and hospital readmit for IL2 is Thursday, June 19th. That would be the start of course #2, and doing this all over again.

If you have some good strategies for surviving a hospital stay, I’m listening. The problem is that while I’m there I have no interest in reading, watching TV, or listening to music. I’m just watching the clock, waiting for the next treatment and trying to survive. I’m probably making it worse than it has to be.

 

Needless to say I’m trying to plan some fun activities prior to June 19th. If I thought being in the hospital in March was tough, I don’t know how I’m going to survive being there in June :-(. We’re talking about some possible day trips between now and then. I’m hoping to make it to the beach, and a neighbor and I aleady have a Phillies day planned. Of course, the pool will be open soon and I’ll want to enjoy that before I have the port again. I’ll enjoy getting my flowers planted, and reading some good books. It will all be good! 

These past weeks have been incredible with such an outpouring of friendship and support. I’ve received inspiring notes and cards, beautiful flowers, an overflowing planter, a special harvest, an angel all the way from Slovakia, and a collaboratively knitted shawl full of blessings, love and positive thoughts. I even had a song dedicated to me – so very touching! It all helps me to remain strong and have faith that I can beat melanoma. 

May is Melanoma Awareness Month, so check your skin, check a loved one’s skin, stay out of tanning booths and use sunscreen. 

Thanks all!

New Battle Begins Tuesday

I can’t believe it’s been over a year since I last posted. A lot has happened on the cancer front. I was on leukine for about 9 months (gave myself shots in the stomach, two weeks on – two weeks off). During that therapy I had a few small tumors removed from my right leg, all above the chemo line from the isolated limb perfusion (November ’12). I also had physical therapy on and off trying to get my ankle and foot in better working order. My ankle is still partially frozen, but better than it was, and my big toe will forever point skyward. I have some neuropathy in that foot, but none of this keeps me from doing anything so all is well. I’ve had a great year with lots for which to be extremely thankful!

The downside is that I haven’t been able to get back into remission since before the isolated limb perfusion treatment in November 2012. Knowing I still had cancer cells floating around and popping up in my right leg made me feel like a sitting duck, just waiting to learn which organ was the eventual casualty. Well, my PET scan and oncology appointment on March 4th showed two new tumors in my right lung and more in my right leg. Luckily, the tumors are still small are treatable. So, in quick succession, I’ve signed up for a clinical trial, had a lung biopsy, echo cardiogram, pulmonary function test, and brain MRI. This Tuesday I’m scheduled to get a Hohn port, then lab work, then a return oncology visit to learn if I’ve been accepted into the clinical trial. It won’t make much of a difference since I’ll get the same treatment either way. If a bed is available, I’ll get admitted right away to begin treatment Tuesday night. Otherwise, I’ll either hang around or go home for a few hours till they have a bed ready for me in the cancer wing at Hershey Medical Center.

The treatment is High Dose Interleukin-2 (HD IL-2) and Temozolomide (TMZ). I have to be admitted to the hospital for Course 1 – Cycle 1 of the HD IL-2 treatment. I’ll be given as many doses of HD IL-2 (up to a maximum of 14) at 8 hour intervals (by IV), and will be discharged when the acute side effects have subsided. I’ll get Zofran and Compazine as needed. Then I’ll be reassessed around Day 10 after discharge and will be readmitted for Course 1- Cycle 2 of the same HD IL-2 treatment. On the 28th day after discharge from the 2nd cycle I’ll start TMZ for 21 days (this is a pill).

I’ll be reassessed again after the end of the complete course, and the response will determine what happens next. If I have progressive disease, I’ll stop the treatment and be observed. If I have complete remission or stable disease, I will receive another complete course of treatment and then be observed. If I have stable disease after the second course, I will go off the study treatment. If I have a partial or minor response, I can continue the treatment up to a maximum of 4 courses.

Everyone wants to know about the side effects of the drug and, believe me, so do I! Side effects may be mild or serious, and the health team will be monitoring me to give me medicines to help lessen any side effects. I’m calling it my Lenten diet! I expect to feel as though I have the flu with loss of appetite and weight loss. Since both treatments say hair loss likely, I’m expecting that too. I remember what I felt like during the intensive interferon treatment in 2008, and I expect this to be a bit worse since it’s given every 8 hours. But I’ll be in the hospital, so I know they’ll keep me as comfortable as possible.

Assuming I’m able to handle all 14 doses of the HD IL-2 this week, I’ll have 1 dose Tuesday night, 3 on Wednesday, 3 on Thursday, 3 on Friday, 3 on Saturday, and 1 on Sunday. I guess I might be home on Monday or Tuesday of next week? Then I’ll get about 10 days off and, hopefully, get to do it all over again.

I ready! I’ve been through a lot with this cancer battle, and I know how to get through it. I’m more worried about my family than I am about me. I’ll be fine. I’ve got a strong support system – after two battles already, you learn on whom you can count to be there in the good and the bad times. You also learn what being a friend really means.

I’m looking forward to Spring when I get home, and even planted pansies in planters on our front porch so they’ll be there to greet me in a week. I know in a week’s time we’ll have fewer cold days, the days will be longer, the grass will be greener, the bulbs will be higher, and I will have survived Course 1 – Cycle 1! Please send your prayers, good thoughts, and positive mojo as I believe in their collective power! I’m going to kick cancer’s butt this time!!