Chemotherapy for Cancer

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GammaKnife, tumor #2 Tumor #3, the lung Chemotherapy Blood test results Living after chemo, part 1 Living after chemo, part 2 Living after chemo, part 3 My cancer "cure"

Purpose: My purpose in making these pages is to help people. My hope is that seeing how brain surgery can go in the year 2009 will ease minds and give some hope and comfort.

This is the personal experience of David Luckenbach, diagnosed with brain and lung cancer in May 2009. A sailing instructor who smoked and drank, and almost died, saved by friends and angels and given another chance. Odd fellow I am, always ready to help other people, and neglected myself.

June 12, Friday
We went to the referred oncologist in Marble Falls, Dr. Preston, who is very good. Together we set up a chemo treatment starting Tuesday with two drugs, Carboplatin and Paclitaxel. No more radiation, at least initially. One treatment per week for three weeks, then one week off, for the next two and one half months. I'm also to get a new CT scan this week, to have a base to compare later scans with and see how much progress has been made.

Dr. Preston, MD, PHD

June 16, Tuesday
The first Chemo Day, this marks my gradual decline into poor health. After this, every week was worse and I had less energy and more "side effects" of the chemo destroying my body, not just the cancer. Just one month since the brain surgery I started the chemotherapy in Marble Falls, so I have a 20 minute drive each way instead of the 2 hour drive to San Antonio. This is going to save lots of time and money, but I still have to go to San Antonio, just not as often. Now to see what chemo is really like.

First we went over the blood test results, updated regularly here. I scored well on white and red blood cell count, and all the rest. Good liver and kidneys and all, and I found out I'm not diabetic either. I'll be tested each week the day before I get more chemo, as these two chemo drugs will kill bone marrow and cut down blood cell production among other things, so if platelet count gets too low we'll stop the chemo while I recover, hopefully.

Nice room for getting the chemo, had 3 other patients, room for 6. They have wireless, but I just brought my aircard for access. It's pretty fast in Marble Falls, and the work helps pass the time. Someone delivered lunch, BBQ brisquet, sausage and beans, so I'm doing very well indeed! So far no side effects, I guess those aren't for everyone, we'll see.

The nurse gave me two prescriptions for anti nausea drugs, which I saved just in case I need them, but I didn't get them filled since I'm rarely nauseous. They give anti nausea drugs and steriods as "pre meds" before the Taxol (Pachitaxel) and Carboplatin to mask the worst side effects.

I have an appointment tomorrow for that new CT scan, I'm trying the "banana" flavored barium drink this time.

Lunch at CCCST in Marble Falls
tumor in the right lung

June 17, Wednesday.
Day after starting chemo, but I still feel fine. The "pre meds" work, no nausea, food tastes good, the big steroid dose in them makes me feel good anyway. We stopped by Forrest's and helped them get the boat and camper hooked up for their trip to Port O'Connor, and ran errands.

I had the Banana Taffy flavored Barium, so I started to drink it as scheduled, before I went to Synergy Advanced Imaging. This was nice, I could sip one at home and didn't have to sit and drink it in the waiting room. Saved me a lot of time. I liked the "banana taffy " flavor better, I actually didn't mind drinking it. Big improvement from the first time.

The scan came out very good with high detail. This slice shows the tumor in the right lung, it's on the left because this view is looking from the bottom up.

Alison picked up the blood test results at CCCST while Frank scanned me, and the scans really came out clear (that's Frank in the picture, awesome tech he is, one of the best). A Siemens Sensation 16 CT scanner from Germany, it spoke with an English accent to tell me when to hold my breath or not. Dr. Preston is having my blood tested weekly, or the day before the chemotherapy, so they can tell how the chemo is affecting my blood cell production and adjust the chemo if needed.

CT scanner by Siemons

MRI scanner by Siemons

Frank also showed me their MRI, also by Siemens, a Symphony model.

This evening my stomach started rumbling after supper, delicious grass fed antibiotic free Angus beef from HEB made a delicious hamburger. The rumbling might have been from that barium drink for the CT scan, so I drank a DanActive™ by Dannon™ and it settled down. DanActive™ is a probiotic dairy drink that tastes very good. Because the chemo may knock down my ability to make white and red blood cells, and lower my resistance to infection, this drink is a boost to my immune system and helps. About 70% of my immune system is in my digestive tract, and the DanActive™ contains the L.casei Imunitas™ cultures. I'm not sure how it works, but it always makes me feel better and settles my stomach. I've been drinking it for years, and I like the vanilla flavor best.

DanActive digestive aid drink

June 18, Thursday
I still feel good and woke up at 4am to get some work done before heading south. We went to San Antonio to see Dr. Hernandez for a follow up about the Gamma Knife treatment and pick up the MRI from a week before. I seem to be gaining weight instead of losing it. Chemo side effects are still masked, so we swung by New Braunfels to visit Lloyd, but he was gone for his radiation treatment and we missed him. Stopped at El Rancho in Johnson City for lunch and Alison had the shrimp, it was very good! I had an appetizer to save some room for another of those Angus organic hamburgers for supper, with red bell peppers and spinach.

June 19, Friday
One week to go before I can sail again! Already scheduled to go with Jack, oh boy, hope I feel up to it. Today was a sleepy day, I still feel good but I was a bit tired today so I got a lot of sleep. First sign of the chemo killing me off. Went to town in the afternoon and got new signs for the truck doors, they look much better than the faded ones.

June 20, Saturday
Still tired and sleeping more than normal. Went to Windy Point to see Charles and Donna, they brought some fish from Lake Palestine for us. Went to bed early.

June 21, Fathers Day
I felt better today. Went to Johnny's for Fathers Day. Yes, my father was there too, 86. I sat in under the shade tree and talked until supper, when I got very tired. Alison drove us home. Sure was glad to feel improved, didn't get tired until 5pm, but I got tired.

June 22/23
Back to chemo for round 2! Monday I was blood tested again, will have it tested one day before chemo to monitor the damage to my bone marrow, production of red and white blood cells, and more. If my blood production drops too low, the plan is to reduce or stop the chemo and hope everything recovers. The reports are very interesting, some things have gone up and some down, I have a lot to learn! White cells have stayed the same at 6.3, but red cells have gone done from 4.98 to 4.84. Most things have stayed about the same, but carbon dioxide went down from 32 to 25. Platelet count went way down, from 487 which was high and out of the normal range to 255 this week!
Tuesday my full blood report was late, so I had to wait for my chemo until it arrived, which didn't take very long. Dr. Preston had compared the lung tumor's size in the June 17 scan with the original scan done on May 14 and found it had not grown, looks like all those prayers are making a difference! Since the IV went faster this time, I was only there about 3 hours.
Stopped by Forrest's house, and we planned to buy the materials left for the underground power line tomorrow. We arrived home to find the new pole had been set so it's time for us to put the meter loop together.

June 24/25, Wed/Thur
Called Forrest at sunrise, tried to get an early start on the meter loop before it got hot. We worked all day, and it did get over 100, and we were both wore out by 5 so we put off the rest for tomorrow. Almost done. The 8 pound sledge putting in the ground rod gave me sore muscles, but they still work! I was very tired last week on Thursday, not sure if it was the radiation the week before or the chemo last week, so Thursday should know more. Forrest is back in the hospital for his heart in July. We finished the power line Thursday by 4pm, glad that's done. Still no nausea or tiredness from the chemo, but I had two cluster headaches in the evening and one was very bad. Haven't had any in months, looks like another cluster. Clusters are very bad, and this is when they started again, after the 2nd dose of chemo.

June 26
Slept all morning recovering from the headaches, going to take it easy today. The side effects are becoming evident, even with the masking "pre med" drugs. Had more cluster headaches, I set a new record, five headaches in 36 hours, but surpassed that Saturday with 5 or 6, I lost count. You don't want to know about them personally, but they're much worse than migraines. I didn't go sailing with Jack as planned, alas. They usually come in a short cluster about 2 weeks long, and then I'll go 6 months or more without any, thank goodness. The silver lining is, after a cluster headache normal pain seems like a minor inconvenience!

June 29
Still having cluster headaches, 5 or 6 a day. Trying everything, MaxAlt, coffee, and even got some oxygen today. All help, but only if used very early in a headache. Also back on Verapamil to lower my blood pressure, but no help from that yet. Another blood test today, and chemo tomorrow if blood is ok.

June 30
Interesting day! Cluster headaches are easing off, I hope the "cluster" is near over. Had one while talking to Dr. Preston before the chemo, he was very helpful. Tana gave me my first CocaCola in over 20 years, I drank it for the caffeine and it tasted horrible but they had no coffee. They did have oxygen, and I did take a MaxAlt, so the headache went away after not too long and I got my chemotherapy.
I found out the oxygen mask had been set incorrectly on Monday and not delivering the 6 liter/minute dose of oxygen to stop a cluster. Perhaps this made it not work so well to stop the headache, but it still helped. I've been ready to try it while set correctly, but I wasn't able to start another headache, praise the Lord! Only two today, so I hope this cluster is coming to a close. No such luck.
Joel stopped by, and we had supper and glued and installed the cable internet conduit in the power ditch and started backfilling the ditch. My first post-op sailing class is next week during the two week break in the chemotherapy. Wish me luck!

July 1
Another headache free day.

July 2
Went for my 6 week checkup with Dr. Bogaev, the brain surgeon. I showed him the June 11 MRI scan made for the Gamma Knife, and the place where he removed the tumor looked good. Had lunch with Jack Carter and we discussed various headache treatments.
Headaches returned about the same time as last week. It seems the "pre med" steroids given on Tuesday for the chemo may have an effect that wears off the same time on Thursday. The oxygen helps some, but so far it's temporary relief. I'm adding some coffee, and will take a MaxAlt if that doesn't work. Blue Cross is limiting how many MaxAlts they will cover to 18 per month, if I take 5 a day that doesn't last long! With help from Jack this limit was reduced. Good reason to try other things like oxygen and coffee, as Maxalt is also bad for internal organs, like chemo is but not so bad.

July 6
It seems the chemo therapy has caught up with me, something has. I've tired most of the time and sleeping a lot. Maybe this is why I don't have chemo this week. The headaches do seem to be tapering off in frequency, I didn't have any last night, but they keep occuring. Ice tea helps them also, better than coffee. I'm looking at a week of taking it easy, unless something changes.

July 8
No headaches the night before, and none all day the 8th, but I slept all day with short times being up. Finally felt rested in the evening, but had another headache at 1AM. They are still here.

July 10
Alison and I went sailing today with Randale of San Antonio, first time since the surgery. Randale and Alison learned to sail the boat without the rudder, not easy to do, but they made headway against the wind and sometimes tacked when they wanted to! Afterwards the headaches returned, and I had a very bad two days.

The chemo therapy seems to be taking care of my pre cancerous things on my arm, just like my dermatologist said it might. They swelled some and turned red, then flaked off and appear to be gone, quite amazing. Hopefully it's doing well with the lung tumor also. Other effects from the chemo show up, and the cluster headaches really tire me out.

July 13/14
Round 2 of the chemo starts with blood test on Monday, which came back good. Platelets dropped a bit to 223. Tuesday was the new dose of chemo therapy. Discussed a steroid therapy for the headaches, consulted with Jack and we agreed on a small daily dose of 2mg twice a day of Decadron. Only had one headache on July 19 and it eased off with oxygen and three cups of coffee, so no MaxAlt this week. Steroids because of the headaches, never did that before, but never had them this long before.

July 15
Went to San Antonio for a new MRI scan. The technician said he couldn't find the tumor anymore, but I haven't seen the report yet, or the pictures. I'm feeling good, but Alison said my hair is thinning so perhaps the chemo will cause my hair to fall out.

July 20/21
Week two of blood test and chemo. The MRI report supposed to be faxed to Dr. Preston did not arrive, and the viewer was not on the disk so I can't see the scan. Monday afternoon the Northland Cable guys came and ran the internet cable underground in the conduit I buried for it.
Chemo on Tuesday was uneventful, but Alison and I went sailing afterwards. That was very good.

7/27 Monday, more silver linings!
Today turned out not boring at all. We went for a walk close to sundown, and Alison slipped on some gravel, fell on her leg, and broke her tibula. We had a good trip to the ER in Burnet, well, as good as those are. Got a proper cast on Wednesday. I have become the healthiest of us two very quickly, very good that I feel not too bad right now. I'm so thankful we have family and friends nearby.

7/28 Tuesday
Friends visited Alison while I got her pain prescription first and then my chemo. Dr. Preston and I had a good talk and together with Jack Carter we agreed to halve my daily steroid dose to 1mg twice a day. The side effects are becoming too prominent and I'm not getting enough sleep. Another good blood test, and the glucose is back to normal. Tana says the high reading last week could have been a lot of sweets right before, so I had Grapenuts without the Danactive and banana before the test, and the glucose went from 180 to under 100. Tana said that is why they want you to starve before a glucose test, it will be more accurate.

7/30 Thursday
Alison got her cast yesterday, Dr was very encouraging. He thinks she'll walk on it in a few weeks. As breaks go it is a good one. Painful for her, but good for me, as I'm taking over the chores she's been doing which is very good for me.
I have a new CT scan scheduled for 8/6, next Thursday, to check the lung tumor for possible changes. Dr Preston hopes to see a slow or stop in growth, but my hopes are a bit higher. We cut my daily steroid dose in half, I've been getting too many side effects and unable to sleep enough. This may have been a mistake, and it turns out to just mask the headaches and side effects I need 2mg of steroids per day extra on top of the "pre meds" which have 10 mg of the same steroid, Dexamethason.

8/6/2009 Thursday
Frank at Synergy gave me another scan. That Banana Toffy barium didn't taste as good as it did last time. I got a good report too. The big tumor in the lung has shrunk from 5.1 X 5.5 cm to 4.5 X 4.4 cm (see images below), Dr. Preston sure picked the right chemo therapy drugs. He told me it would be encouraging for the growth to slow, having it shrink already is even better to me. The report also said that the tumor in my neck, shrank 5.3 X 4.6 cm to 3.7 X 2.6 cm. Organs look good too. I'm really eating better, avoiding preservatives and processed food and more. Gradually changin my diet as we discover new foods and what they do.

Alison and I have been doing some reading, and we keep finding some food or other that is reported to fight cancer sometimes, so if it's something I don't mind eating, like walnuts or cranberries, I have some each day. We found some "fruit smoothies", Green Goodness and Naked Super Food, that have gobs of these kinds of foods in them, not much fruit, and they actually taste good too, so I drink them too. Not a lot of anything, I have a very varied diet. More organic food of course, and our venison is a frequent meat. For fish Charles brought me catfish from Lake Palestine. Amazing the difference between it and store bought farm raised catfish, this really does taste better. The cluster headaches are gone sometimes, the new steroid regimen seems to helped so we cut the dose in half again to 1mg twice a day early this week, I hope to be off them soon, but that hope didn't work.

Scan done on 6/17/09
when chemo started
Scan done on 8/6/09, after 6 treatments
less than 2 months of chemo

This is very encouraging, back on chemo therapy next Tuesday, 8/11/09. Still doing one dose once a week for three weeks, then one week off. Odd that I still feel good sometimes, must be all those prayers.

It's been a heckuva week. My blood test came back with the platelets just below 200, still OK, sorta. On Tuesday Dr. Preston cut my steroid dose in half again to 1/2 mg twice a day, but silly me did an experiment and cut them out entirely on Wednesday and Thursday morning. Big mistake, had a cluster headache about noon, a bad one. Then my knees started hurting, even when I wasn't walking, even when I laid down, so I got back on the steroids which releaved the pain after 2 doses, and I went to 1 mg per day.

I'm so tired I slept, and all day and all night! Even on steroids, I slept, very hard for me to do. Do another blood test Monday and chemo on Tuesday, if my blood comes back ok. Still sleeping almost all the time, and today is Sunday. Still no Maxalt, just oxygen and iced tea still works for the headaches, but they are not gone. I must go back to bed.

Life after chemo, trying to rebuild

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