so far so good

Jill helped me to remove the turban and band aids last night. She put neosporin on each sore and put band aids on three. No pain. No headache. No nausea. No diarrhea. All is good. This morning Jill will drive me down to the IUSCC for an MRI and appointment afterward with Dr Einhorn. He will provide me with news about my lung cancer and continued use of crizotinib (now Xalkori after approval by the FDA).

8/30 Gamma Knife Radiosurgery

All went well yesterday; but, it was an incredibly long day. Registered at the outpatient desk at 7:45AM and left the hospital at 8:30PM. Am doing fine. Not quite as handsome as Capt Jean-Luc Picard as BORG on Star - The Next Generation; but that is quite a frame. It was attached using four sharp pins after I got four shots to numb the areas. Each brace in the picture is held at the top by a pin that attaches to my skin but doesn't attach to the skull. The pins are a bit tight. The numbing shots even numbed my lower left lip. These numbing shots are, apparently, the most painful step for many; but, they weren't really too bad for me.

After installing the frame, I was taken for an MRI. They also temporarily attached a large hard plastic bubble with labeled holes and stuck measuring pins to determine "air space" - I assume between the Gamma Knife and my scalp. Two doctors repeated the measurements for accuracy. The MRI and air space measurements would be used to target the lesion locations and compute the Gamma Knife settings. Four doctors (radiation oncology, neurology, neurosurgeon and a physicist) spent around 2 1/2 hours with the MRI data planning the procedure. The best news was that they had decided that they could treat all 13 lesions this time and I will not need to have a second treatment in 3 - 4 weeks.

When they finally finished, I was moved into the Gamma Knife room. The table was similar to an MRI table; but, it had a frame on which my head frame was attached. It felt like two pins on my frame that slid into two slots on the machine frame. All four doctors remained present for the entire treatment. The process of approximately 25 procedures started. The doctors measured the various angles for adjustments. Two doctors set and double-checked each setting - one would use a tool to set the X axis, one would check that setting and both would say it for an RN to confirm what was on the computer list for each procedure.  This was repeated for the Y and Z axis.

The table was then moved into the Gamma Knife. It is similar to going into an MRI tube. It was very quiet until the 2nd or 3rd procedure when the RN had music set up for me to listen to. I could move my feet, hands and I could talk. So...I proceeded to engage in music trivia with the RN. Those who know me know that I was pretty good - particularly on the 70's mix and the James Taylor. This was helpful throughout the process until the last three or four procedures. It had become pretty grueling by that time.

After each procedure, the table was moved back out and the doctors went through the reset process for each new procedure-X, Y, Z, check, double-check. For some, I had to have my chin almost touching my chest. For others, my head was about as far back as possible.  Others were various head positions. My head was moved since the multi-ton machine with 201 beams from cobalt-60 sources doesn't move. The circle of 201 beams are aimed at a very specific target - a lesion or tumor as identified on the MRI. The 201 beams converge to a very small point. Each beam is very low radiation; but, the radiation is stronger treatment level at the targeted location due to all converging at that point.

Some of the procedures were only a few minutes.  Others were 15+ minutes. In total, I received about 3 1/2 hours of this process. Jill went with me and toughed out the entire 13+ hours. It was required that someone drive me home and she drew the short straw. We had left home at 6:45AM and got home a little after 9:30PM. I had one fall at home before I went to bed but didn't hit my head - just landed on my butt! 

Today and tomorrow I have a classy white gauze turban covering four band-aids. I can remove the turban and three of the band-aids tonight. The 4th spot (left front) will heal last because that pin actually penetrated muscle. I will probably need to wear that band-aid for a few extra days.

Can return to minimal activity at home today-depending upon side effects. Thurs Jill will me drive for a CT and to see Dr Einhorn since I must wait 48 hrs before returning to some normal activities. Driving depends if I need to take pain meds.

I return to see Dr Henderson in three months. He will schedule an MRI and determine the status of the lesions. Hopefully, all will be gone or static at that time.

FDA approves crizotinib (now Xalkori)

This is the test drug I have been taking since November, 2010

Non-Small Cell Lung Cancer Drug Gets FDA Nod

By Emily P. Walker, Washington Correspondent, MedPage Today

Reviewed by

August 26, 2011

Review

WASHINGTON -- The FDA has approved crizotinib (Xalkori), a novel targeted therapy

for late-stage non-small cell lung cancer.

The Pfizer drug, an inhibitor of anaplastic lymphoma kinase, is a twice-daily pill

intended for a select group of patients who express the abnormal anaplastic

lymphoma kinase (ALK) gene, which causes cancer development and growth.

The FDA also approved a companion diagnostic called the Vysis ALK Break Apart

FISH Probe Kid, made by Abbott Molecular, to help determine if a patient has the

abnormal ALK gene.

"The approval of Xalkori with a specific test allows the selection of patients who are

more likely to respond to the drug," Richard Pazdur, MD, director of the Office of

Oncology Drug Products in the FDA's Center for Drug Evaluation and Research said

in a press release. "Targeted therapies such as Xalkori are important options for

treating patients with this disease and may ultimately result in fewer side effects."

Crizotinib's safety and effectiveness were established in two single-arm studies

enrolling a total of 255 patients with late-stage ALK-positive non-small cell lung

cancer. One of those studies, published in the New England Journal of Medicine last

year, found that crizotinib shrank or eliminated 57% of ALK-positive non-small cell

lung tumors.

The most common side effects reported in patients receiving crizotinib included vision

disorders, nausea, diarrhea, vomiting, edema, and constipation.

Crizotinib was approved under the FDA's priority review program, which provides for

an expedited six-month review of drugs that may offer major advances in treatment or

that provide a treatment when no adequate therapy exists.

Since publication of trial results last October, crizotinib has generated much

excitement among oncologists who said genetically-targeted treatments like crizotinib

have the potential to change how cancer is treated.

Although no more than 7% of non-small cell lung cancers are driven by the ALK

genes targeted by crizotinib, the drug would still benefit as many as 10,000 patients

with non-small cell lung cancer in the U.S. alone, Gregory Kalemkerian, MD,

co-director of thoracic oncology at the University of Michigan in Ann Arbor, told

Medpage Today last year.

Disclaimer

The information presented in this activity is that of the authors and does not

necessarily represent the views of the University of Pennsylvania School of Medicine,

MedPage Today, and the commercial supporter. Specific medicines discussed in this

activity may not yet be approved by the FDA for the use as indicated by the writer or

reviewer. Before prescribing any medication, we advise you to review the complete

prescribing information, including indications, contraindications, warnings,

precautions, and adverse effects. Specific patient care decisions are the responsibility

of the healthcare professional caring for the patient. Please review our Terms of Use.

© 2004-2011 MedPage Today, LLC. All Rights Reserved.

Gamma Knife radiation surgery

Met neurosurgeon yesterday. Looks like Gamma Knife radiation surgery very soon. Apparently, with the number of lesions and the scatter throughout my brain, he says I will need 2 surgeries. 2nd will be 3-4 weeks after the first. That means one before my trip and one after. They have agreed to try to schedule around my trip ;-)


He went through the risks involved - some of which could be significant - but, have a 3% to 5 % (or less) risk. He also went through the process for the day - a very long day. I should hear about the schedule in the next couple days. Next, I will view a CD about the procedure.

stress test / neurosurgeon

Spoke yesterday with the RN from the cardiologist's office.  She is waiting for the cardiologist to review the full data from the portable monitor, the stress echo and the ultrasound.  However, she didn't seem to think that there is anything significant.  Apparently, my pulse was low - at 39 when I slept wearing the monitor.  Since the Dr had just taken me off metoprolol, she suggested continuing to monitor BP and pulse.  Last night, BP was 144/67 and pulse was 58.  She said that the cardiologist would contact me if he wants to change anything.

Yesterday, I had a brain MRI.  Today, I see Dr H (radiation oncologist) and meet with Dr W (neurosurgeon) who would do the Gamma Knife radiation surgery if they decide to go that direction.

portable monitor

I was able to remove the portable heart monitor today at 5pm. What a relief! I sure hope that it recorded some worthwhile information.

BP and cholesterol

Have you ever heard that your cholesterol was "way too low"? I imagine few people have. Well...apparently, mine is way too low. I stop taking my vytorin and go back for a checkup in a few weeks.

Have you been told that your pulse is too low. Yep, that's me too. Referred to a cardiologist today. Took me off a BP med. I am wearing a fashionable 24-hour portable EKG. I go back in a week or so for a stress echo test.

July 20 CT

Chest/abdomen CT today. Dr J said all looks OK with the CT and bloodwork.

brain

Worked out the schedule re brain lesion treatment. New MRI 8/15. See Dr H and Dr W (radiosurgeon) on 8/16. Hope to do gamma knife radiosurgery the week of 8/22 so that we can, hopefully, be ready for our Sept trip.

spine MRI results

I just rec'd the following information from Dr H - radiation oncologist:

"I was just now able to get a final radiology report signed off.... I had looked at the images last week, seen nothing to give evidence of cancer in the spine, and was only awaiting final confirmation. The official report agrees with my impression (there is no evidence of cancer in the spine). My plan then would be a short interval MRI of your brain, with a tentative plan to use radiosurgery on the one new area and any other metastases that seem to be growing. The short interval scan is because several of the metastases were indeterminate (they looked slightly fuzzier, but not necessarily actually larger, and I want to see if they should be treated or not). Could you please remind me of your vacation plans? I want to schedule the MRI with enough time to do a GK treatment prior to your trip."

So, not evidence of cancer in the spine.  Looks like they will go forward with the Gamma Knife radiosurgery.

another tumor

Well, it appears that things are still evolving. Talked with Dr H today regarding the brain MRI done last Wednesday. He advised me that there appears to be another spot - not actually in my brain - but, in the fluid by my brain stem. They must now wait to decide what to do about the brain lesions until I have a full spine MRI to determine if the cancer has spread down my spine. If there is a spread to the spine, Gamma Knife radiosurgery will not be an option. If there isn't a spread to the spine, they can still consider the Gamma Knife. So...Wednesday I will be spending a long late afternoon getting the spine MRI. They will do the spine scan in 3 sections - each about as long as the brain MRI - about 35 minutes each. I will be given a chance to sit up and stretch between sections.

Over the weekend, Dr E indicated that finding cancer on the gallbladder shouldn't impact my continued participation in the Crizotinib study. We go forward with the regularly scheduled chest and abdomen CT next Wednesday.

7/6 MRI

I spoke with Dr H (radiation oncologist) this morning. Apparently, a few of the brain lesions appear to have possibly grown a little. He said they were "fuzzy". Don't think that is a technical medical term. He is going to review the MRI with a neurologist and get back to me. Options might be another follow-up CT in a couple weeks. Or, they may decide to go forward with radiation gamma knife surgery - which has apparently been the next course of action for the brain lesions that were identified more than 2 years ago.

Also learned today that the cancer on the gallbladder is adenocarcinoma - the same type of cancer that is in my lungs.  The Research RN indicated that this should not impact my continuing on the crizotinib lung cancer study drug.

So...I wait for the feedback from Dr E regarding the gallbladder cancer and from Dr H regarding the brain lesions.

gallbladder cancer

I got a call today from the surgeon who removed my gallbladder last Friday,  7/1. He had just rec'd the pathology report for the gallbladder. It turns out that the gallbladder had cancer tissue. So...I guess this means that the cancer has spread to at least one additional organ. I don't know exactly what this will mean. Dr M will contact Dr E (my oncologist) to ensure that he sees the pathology report. I guess I wait to hear back. Dr M had indicated to Jill that he had removed a very inflamed gallbladder with lots of stones and stringy stuff attached to it. I suppose that might have been the cancer. He indicated that he had removed it all. Now I wait for direction and for the results of the brain MRI this past week.

gallbladder & more

Well, I just noticed it has been a while since I posted. Since my last post, we went to Punta Cana, Dominican Republic, for Jill's nephew's wedding. The wedding was beautiful - on the beach, great weather - a little hot, breeze off the ocean. During the trip, I did had another gallbladder attack. This one was a little milder and I was able to handle it with the pain meds I had been prescribed at the ER. After this 2nd attack, I shifted to eating virtually nothing but fruit. And the resort offered lots of pineapple, cantaloupe, watermelon, mango and papaya. So...fruit for breakfast, lunch and dinner. I managed to not have a 3rd attack.

When we arrived home after a grueling travel experience, I was visited by Montezuma's revenge. Over the next week, my bowels were pretty much evacuated. It turns out that around 8 from the wedding were also afflicted.

On July 1, I went for scheduled gallbladder surgery. My gallbladder was removed using laparoscopic surgery. So, I have a small incision in my belly button where they inserted a light and camera and 2 small incisions where they inserted surgical instruments and removed the gallbladder. Apparently, the gallbladder was extremely inflamed, full of gallstones and had lots of "stringy things" on it. He removed it all. Surgery started at 2:00 and I was home by 6:30. I was told that recuperation would be 5 to 10 days. I've been frustrated because I had hoped to be back to normal more quickly. Today is 5 days and I am now starting to feel better.

This morning, I had a trip to the Cancer Center for a brain MRI. This is a regular follow up scan. Jill drove since I am not yet sure that I should. My belly felt every single bump in the road. I didn't take a pillow; so, I held my belly as much as I could. The MRI was on time and the scan went as usual. I have had many brain MRIs; so, it was pretty much as I expected. Head in a cage. Loud BOOM, BANG, BUZZ, HUM, CLANG, etc. After about 45 minutes, we were on our way home. I, again, felt even the most minor bump. I see Dr H regarding the MRI at the end of July.

I was exhausted when we got home. I immediately took a hour and a half nap. I will need to consider whether I am ready to drive to work tomorrow. It's the same route and distance as the Cancer Center. And I probably can't expect to take a 90 minute nap at the office.

Next lung CT is later this month. I expect to hear that all continues to go well with the Crizotinib.