Hi everyone - Mom asked me to do a quick post. Team Studzinski was back at Karmanos today for the gamma knife radiosurgery procedure...and they made it back to the house around 4-5ish for some much needed rest.
I know she is in good hands the next few days AND that she has plenty of shows on TiVO to keep her sitting still. (Big thanks to the overnight help!)
Happy (almost) Tuesday.
-Melissa
Monday, April 30, 2012
Thursday, April 26, 2012
Show & Tell With MRI Images
I have decided to become a 'frequent flyer' for Gamma Knife
radio-surgery instead of qualifying as a craniotomy customer. Although I
am healthy enough to withstand a third craniotomy, the recovery is much
lengthier and more difficult. At this point, we are focused on keeping
my strength up for any future treatment that may become necessary.Since my third Gamma Knife surgery produced excellent results, we expect an equally good outcome this time. The tumors (# 3 & # 5 for me - if you're keeping track) which were radiated at the end of January are now almost completely gone.
Previously, they were much larger at around 2 cm each and now you can barely see them in the MRI from April 13th (radiation target # 1 pictured above and target # 2 seen on the left).
In addition, only one of my two new tumors - the larger one at approximately 1 cm (pictured to the right) - is resectable. It is located right at the top of my brain, just under my skull, making the neuro-surgery to remove it only a 1 or 2 on the difficulty scale. However, the tumor bed would still need to be radiated a few weeks after the craniotomy.
While the second tumor (seen to the left) is much smaller - only 2 mm in size - it is so deep in my brain, it is considered to be a 4 or 5 on the difficulty scale and not a candidate for removal by resection.
Both of the two new tumors (# 6 & # 7 for me - if you're counting) easily fall in the limit for Gamma Knife and should remain so because only 2 weeks have passed since they were discovered.
Tumor # 4 (in the image on the right) was left to qualify me for the drug trial (target #3). It acts as the tool for demonstrating how well the chemo pill Vemurafenib is working for me If it is effective, it should shrink the tumor - which it did by more than 50% during the first drug cycle, or hold it steady - which it did during the second cycle. It originally was over 1 cm and is now around 4 mm.
Keith and I will be heading down to Karmanos on Monday morning and we expect to be home sometime in the afternoon for me to begin my current 'medical stay-cation'. Hopefully, I will return to work by mid-May.
Monday, April 23, 2012
Decisions Decisions Decisions
Up until this point, when ever there has been a new development in my war with melanoma, I have not felt any hesitation when I was faced with selecting a treatment option. When my oncologist and my neurosurgeon laid out the possibilities, I pretty much picked one out - right then and there - immediately after we finished our discussion.
Right now, I am having a hard time making a treatment decision. This is exactly what Dr. Flaherty forewarned me of at the beginning of this journey: "Going forward, the decisions are going to become more difficult to make." This is because my situation becomes more complicated with each new tumor.
Previously, I had no trouble reaching a conclusion. Typically, Keith, Melissa and I would be in complete agreement rather quickly. I actually even made a joke earlier on about my choice being a 'no-brainer.'
Currently, the answer is not that simple. This is not to imply on any level, that I am no longer fiercely fighting this with every thing I have available to me. I am 100% convinced I am going to beat this. It just used to be distinctly clearer how to best adapt the game plan when the rules changed in the middle of the game.
In the past, one option was overwhelmingly better for me in the long run. This time, it feels like I am choosing between 'best' and 'best' with equal but different benefits and risks. From my perspective, there isn't an obvious front runner. I need more information. Tomorrow, I am meeting with Dr. Kim (my radiation oncologist) to gather more Intel. This will help me select which option will ultimately provide the most benefit with the least risk.
One thing is evident - I have been exponentially blessed with much love, significant support and a compelling amount of prayer.
THANK YOU TO EVERYONE - special kudos to crafty Debbie Crawford for the sparkly KMA letters in our latest picture.
Right now, I am having a hard time making a treatment decision. This is exactly what Dr. Flaherty forewarned me of at the beginning of this journey: "Going forward, the decisions are going to become more difficult to make." This is because my situation becomes more complicated with each new tumor.
Previously, I had no trouble reaching a conclusion. Typically, Keith, Melissa and I would be in complete agreement rather quickly. I actually even made a joke earlier on about my choice being a 'no-brainer.'
Currently, the answer is not that simple. This is not to imply on any level, that I am no longer fiercely fighting this with every thing I have available to me. I am 100% convinced I am going to beat this. It just used to be distinctly clearer how to best adapt the game plan when the rules changed in the middle of the game.
In the past, one option was overwhelmingly better for me in the long run. This time, it feels like I am choosing between 'best' and 'best' with equal but different benefits and risks. From my perspective, there isn't an obvious front runner. I need more information. Tomorrow, I am meeting with Dr. Kim (my radiation oncologist) to gather more Intel. This will help me select which option will ultimately provide the most benefit with the least risk.
One thing is evident - I have been exponentially blessed with much love, significant support and a compelling amount of prayer.
THANK YOU TO EVERYONE - special kudos to crafty Debbie Crawford for the sparkly KMA letters in our latest picture.
Friday, April 20, 2012
One Step Closer to a Plan
Happy
Friday! As promised, I wanted to provide an update before the weekend.
My
latest MRI results show:
-
The original cavities of Tumor # 1 and Tumor # 2 from my two craniotomies remain clear.
-
The radiation from my gamma knife in January continues to eliminate Tumor # 3 and Tumor # 4.
- There was no increase in the size of Tumor #5 (which dramatically decreased in size during the first cycle of Vemurafenib).
- Two new tumors have been identified.
Given
the presence of two new tumors, the KMA team has been conferring over the last few
days to determine the following:
- Can I remain in the Vemurafenib clinical trial?
- What is the recommended treatment plan for the new tumors?
I received terrific news regarding Question 1. Dr. Flaherty obtained approval from Hoffman
La-Roche (the drug manufacturer) for me to remain in the study. Despite the
fact there are 2 new tumors, the Vemurafenib is still working for me in some respects.
- As noted above, Tumor #5 has held steady during the second cycle.
- The first cycle of the drug significantly reduced Tumor # 5 (by more than 50%).
- Additionally, it is resolving the mass in my right lower lung which was identified last August.
Keith & I will be at Karmanos
Monday morning to answer Question #2. We have an appointment with Dr.
Mittal (my neurosurgeon) to review his recommended treatment plan that was
formulated with Dr. Flaherty's input.
I am
beyond grateful that I get to stay in the study. It is such a relief as the drug is exorbitantly expensive.
Stay
tuned for a report on how we intend to show the cancer who is really the
boss!
Tuesday, April 17, 2012
Latest News is 'Mixed'
Even though Keith & I spent several hours down at Karmanos today, we left in a holding pattern.
- CT scan had good results.
- MRI results require further discussion/consultation with broader team.
The tumor board will confer Wednesday afternoon. We expect to hear something by the end of the week.
The encouraging news is that I was allowed to leave with another round of drugs for a third cycle until a clear plan of action can be formed.
Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, vision cleared, ambition inspired and success achieved.” - Helen Keller
Thursday, April 12, 2012
Hoping for Continued Good News
Bright and early on Friday morning, Keith and I are headed down to Karmanos for my regularly scheduled brain MRI and CT scans of my chest, abdomen and pelvis. This marks the end of my second cycle of Vemurafenib. We will return to Karmanos next Tuesday to meet with my oncology team to discuss the test results.
While everybody else is praying for me to be healed, I continue to pray to be worthy of a miracle. I remain grateful for having been admitted to the drug study and thankful for the ongoing support each of you has provided. This long journey would have been much more difficult without it.
Stay tuned for an update on how successfully I am KMA!
While everybody else is praying for me to be healed, I continue to pray to be worthy of a miracle. I remain grateful for having been admitted to the drug study and thankful for the ongoing support each of you has provided. This long journey would have been much more difficult without it.
Stay tuned for an update on how successfully I am KMA!
Tuesday, April 3, 2012
Phenomenal Friday - and Beyond!
We had tickets to the Red Wings hockey game last Friday & Keith kept telling me it would be alright if we didn't go. I know it was because he didn't see how I was going to get up the stairs at the Joe Louis arena without him pushing, pulling or pretty much carrying me up. We frequently joke about how great grandma could beat me getting anywhere these days. Just so you know, she is 94 years old. (FYI: she is one tough lady having beat cancer more than once herself).
However, the good Lord works in mysterious ways. I actually had an excellent day on Friday - definitely the best in weeks and weeks. It even topped the day we were at mass when I had a "mini- recovery" compared to the days before when I could barely walk or stand (which Keith was worried about as it would be preferable to have everyone see how well I was doing verses a slowed down version of myself).
Fortunately, all my joints were working: no swelling, no pain anywhere - not in my toes, ankles, knees, hips, fingers, wrists, elbows, or shoulders (almost a miracle really). Everybody who sees me regularly noticed.
You should have seen me doing "the Charleston" down the aisles between every one's cubicles at work. It was fantastic to demonstrate that I was perfectly able to stroll down to the printer to pick up my own documents (which my co-worker Jackie has kindly been bringing to me when she sees them). Unfortunately, the disparity between my former sprinting walk and my current shuffle is rather disproportionate, so it's hard not to notice no matter how I try to disguise it.
Additionally, when I was walking towards the salon where I go to get my nails done, my manicurist Shawn stood up and and watched me approach with a look of complete disbelief. For weeks now, she has witnessed me hobbling as I make my way in. On occasion, she has even run out to the parking lot to assist me when I go to the grocery store located in the same strip mall, insisting on pushing my cart and loading my groceries in my car (such a sweetheart).
I was going to post this over the weekend but I am glad I waited because I am thrilled to say this absence of joint swelling has lasted for 5 days now. Talk about scoring a break! If this keeps up, I might even have to cancel the acupuncture appointment I made. Pretty cool, huh?
Fortunately, all my joints were working: no swelling, no pain anywhere - not in my toes, ankles, knees, hips, fingers, wrists, elbows, or shoulders (almost a miracle really). Everybody who sees me regularly noticed.
You should have seen me doing "the Charleston" down the aisles between every one's cubicles at work. It was fantastic to demonstrate that I was perfectly able to stroll down to the printer to pick up my own documents (which my co-worker Jackie has kindly been bringing to me when she sees them). Unfortunately, the disparity between my former sprinting walk and my current shuffle is rather disproportionate, so it's hard not to notice no matter how I try to disguise it.
Additionally, when I was walking towards the salon where I go to get my nails done, my manicurist Shawn stood up and and watched me approach with a look of complete disbelief. For weeks now, she has witnessed me hobbling as I make my way in. On occasion, she has even run out to the parking lot to assist me when I go to the grocery store located in the same strip mall, insisting on pushing my cart and loading my groceries in my car (such a sweetheart).
I was going to post this over the weekend but I am glad I waited because I am thrilled to say this absence of joint swelling has lasted for 5 days now. Talk about scoring a break! If this keeps up, I might even have to cancel the acupuncture appointment I made. Pretty cool, huh?
Monday, March 26, 2012
Creative Problem Solving
In case anyone decides to tackle a "re-design" of the human race, I have some suggestions. Instead of one thumb and four fingers on each hand, I highly recommend humans having two thumbs and three fingers on each hand. This is based on the recent past where I have temporarily lost the use of some fingers, alternately followed by the inability to use my thumbs (all related to joint problems - a known side effect of Vemurafenib).
When my index fingers were out of commission, my other fingers could "fill in" and I could still function pretty well. When my thumbs were messed up, all my fingers were poor substitutes for just about any task. Just picture pulling your pants down, your socks up or using your hands to write, peel, cut, button, etc. BUT imagine executing these moves with out utilizing your thumbs. Thus my inclination to:
So far, I have been successful at finding a solution (other than obtaining assistance from some one else). I have become much more ambidextrous and can now use either hand to eat, brush my teeth, comb my hair, etc. You never realize how much you favor one hand over the other for certain things until you are forced to use the opposite hand for everything.
Perform an experiment by swapping hands for a few basic tasks. It is unbelievably awkward - but doable.
In the end, the one task that finally stumped me was hole punching legal documents at work. When my hands and wrists were on the fritz, I could operate the hole punch by leaning on it with my elbow. Once my shoulders were jacked up, the only solution I could come up with was to sit on the hole punch - which even for stubborn Peggy was a little too crazy.
Ultimately, I asked a co-worker if I could trade a task with her. She hole punched the loan documents for me without handing off something on her 'to do' list to me. This is one small example of the endless amounts of help which have been graciously offered to me both at home and at work. Hopefully everyone knows how grateful I am for all the assistance.
When my index fingers were out of commission, my other fingers could "fill in" and I could still function pretty well. When my thumbs were messed up, all my fingers were poor substitutes for just about any task. Just picture pulling your pants down, your socks up or using your hands to write, peel, cut, button, etc. BUT imagine executing these moves with out utilizing your thumbs. Thus my inclination to:
- wear skirts lately to avoid maneuvering pants either up or down
- be grateful for the recent unseasonably warm weather eliminating the need for socks
- cease making salad to avoid holding a knife and chopping
- blah, blah, blah
So far, I have been successful at finding a solution (other than obtaining assistance from some one else). I have become much more ambidextrous and can now use either hand to eat, brush my teeth, comb my hair, etc. You never realize how much you favor one hand over the other for certain things until you are forced to use the opposite hand for everything.
Perform an experiment by swapping hands for a few basic tasks. It is unbelievably awkward - but doable.
In the end, the one task that finally stumped me was hole punching legal documents at work. When my hands and wrists were on the fritz, I could operate the hole punch by leaning on it with my elbow. Once my shoulders were jacked up, the only solution I could come up with was to sit on the hole punch - which even for stubborn Peggy was a little too crazy.
Ultimately, I asked a co-worker if I could trade a task with her. She hole punched the loan documents for me without handing off something on her 'to do' list to me. This is one small example of the endless amounts of help which have been graciously offered to me both at home and at work. Hopefully everyone knows how grateful I am for all the assistance.
Tuesday, March 20, 2012
Prayers Answered
The Vemurafenib is working! In just 28 days, my remaining brain tumor is significantly smaller AND equally important - no new brain tumors were detected in my latest MRI.
When Dr. Flaherty told us the phenomenally good news, I wanted to jump down from the examining table and dance. However, I was having "one of those days" (swollen and inflamed joints in my feet, knees and shoulders were making walking and standing a little complicated).
I teasingly asked Keith & Melissa why they weren't whooping it up for me. Later, I realized they were too stunned to react. The outcome - an absolute reduction in the size of the tumor - was more than we had hoped for after only 4 weeks of treatment.
If the tumor had merely stopped growing, that alone would have been a cause to celebrate. The fact that the medication also appears to have halted the development of new tumors (for now at least) calls for downright rejoicing.
When Keith and I were driving Melissa to the airport today, she admitted that this was the first time since last August that she felt okay about leaving. Although she mentioned that it would have been lovely to have time to go out and celebrate such a great outcome. I settled for her officially dancing by the curb when we dropped her off - only to have Keith perform his own little 'happy dance' for me right there too.
I EXPECT EVERYBODY TO GET UP AND DANCE AFTER THEY READ THIS (EVEN IF YOU ARE AT WORK). FEEL FREE TO PUNCTUATE IT WITH A FEW YAHOOS. TEARS OF ABSOLUTE JOY ARE ALSO AN ACCEPTABLE OPTION.
When Dr. Flaherty told us the phenomenally good news, I wanted to jump down from the examining table and dance. However, I was having "one of those days" (swollen and inflamed joints in my feet, knees and shoulders were making walking and standing a little complicated).
I teasingly asked Keith & Melissa why they weren't whooping it up for me. Later, I realized they were too stunned to react. The outcome - an absolute reduction in the size of the tumor - was more than we had hoped for after only 4 weeks of treatment.
If the tumor had merely stopped growing, that alone would have been a cause to celebrate. The fact that the medication also appears to have halted the development of new tumors (for now at least) calls for downright rejoicing.
When Keith and I were driving Melissa to the airport today, she admitted that this was the first time since last August that she felt okay about leaving. Although she mentioned that it would have been lovely to have time to go out and celebrate such a great outcome. I settled for her officially dancing by the curb when we dropped her off - only to have Keith perform his own little 'happy dance' for me right there too.
I EXPECT EVERYBODY TO GET UP AND DANCE AFTER THEY READ THIS (EVEN IF YOU ARE AT WORK). FEEL FREE TO PUNCTUATE IT WITH A FEW YAHOOS. TEARS OF ABSOLUTE JOY ARE ALSO AN ACCEPTABLE OPTION.
Sunday, March 18, 2012
Our Friends and Family - How Great Thou Art!
THANK YOU! THANK YOU! THANK YOU!
I cannot tell you how much I have been looking forward to this day. St. Augustine / St. Monica is not merely physically gorgeous, the atmosphere is downright inspiring. Father Dan and his congregation are always so warm and welcoming to visitors. The gospel choir sings beautifully and their rendition of "How Great Thou Art" brought several people to tears. In fact, everyone in attendance thanked us for connecting them to such a vibrant community.
Frankly, I expected the mass to be uplifting. I was pleased that the gathering managed to surpass even my lofty expectations. Keith, Melissa and I were grateful for the amazing show of support today (the KMA posse consisted of more than 100 family and friends, doubling the size of a typical Sunday mass).
As if that was not enough, the flash mob that performed in the parking lot after the service blew me away!
Stay tuned for pictures (please send yours if you haven't already).
I cannot tell you how much I have been looking forward to this day. St. Augustine / St. Monica is not merely physically gorgeous, the atmosphere is downright inspiring. Father Dan and his congregation are always so warm and welcoming to visitors. The gospel choir sings beautifully and their rendition of "How Great Thou Art" brought several people to tears. In fact, everyone in attendance thanked us for connecting them to such a vibrant community.
Frankly, I expected the mass to be uplifting. I was pleased that the gathering managed to surpass even my lofty expectations. Keith, Melissa and I were grateful for the amazing show of support today (the KMA posse consisted of more than 100 family and friends, doubling the size of a typical Sunday mass).
As if that was not enough, the flash mob that performed in the parking lot after the service blew me away!
Stay tuned for pictures (please send yours if you haven't already).
Monday, March 12, 2012
Social Gathering After 10 AM Mass on 3/18 Reloctated to Detroit Golf Club
The congregation at St. Monica / St. Augustine (SASM) is holding a celebration of St. Joseph's Feast Day this Sunday after the 10 AM mass. Since the parishioners will be utilizing the social hall to serve their meal, our social gathering after the 10 AM mass is being relocated to the Detroit Golf Club (DGC) so as not to disrupt the church's onsite celebration after the 10 AM mass.
DGC is approximately 10 miles away from SASM - west of Woodward Avenue and south of 7 Mile Rd. The address of the club is 17911 Hamilton Rd. Detroit, MI 48203-1708. It is accessed off of Pontchartrain Blvd. (which is the first intersection west of Woodward).
When heading south on Pontchartrain Blvd. from 7 Mile, the club entrance is the first right turn - approximately 1/4 mile from 7 Mile Rd. You will see the golf club straight ahead. Just a heads up: MapQuest and other mapping sites will instruct you to turn on Hamilton Rd (which is the residential street that surrounds the club) Just head straight through the brick entrance to the club. Please call Keith's cell (248.730.3452) Peggy's cell (248.214.4412) or Melissa's (617.290.9033) if you need additional help locating the club.
Inform the guard at the security station that you are coming to the club for my gathering. There is a covered drop off area at the main entrance of the clubhouse. Once inside, someone will be able to direct you to the room we will be using. Coffee, tea and juice will be served along with a fruit and vegetable platter and some rolls.
FYI: BLUE JEANS ARE NOT ALLOWED IN THE CLUB HOUSE.
We are looking forward to seeing everyone!
DGC is approximately 10 miles away from SASM - west of Woodward Avenue and south of 7 Mile Rd. The address of the club is 17911 Hamilton Rd. Detroit, MI 48203-1708. It is accessed off of Pontchartrain Blvd. (which is the first intersection west of Woodward).
When heading south on Pontchartrain Blvd. from 7 Mile, the club entrance is the first right turn - approximately 1/4 mile from 7 Mile Rd. You will see the golf club straight ahead. Just a heads up: MapQuest and other mapping sites will instruct you to turn on Hamilton Rd (which is the residential street that surrounds the club) Just head straight through the brick entrance to the club. Please call Keith's cell (248.730.3452) Peggy's cell (248.214.4412) or Melissa's (617.290.9033) if you need additional help locating the club.
Inform the guard at the security station that you are coming to the club for my gathering. There is a covered drop off area at the main entrance of the clubhouse. Once inside, someone will be able to direct you to the room we will be using. Coffee, tea and juice will be served along with a fruit and vegetable platter and some rolls.
FYI: BLUE JEANS ARE NOT ALLOWED IN THE CLUB HOUSE.
We are looking forward to seeing everyone!
Wednesday, March 7, 2012
What? No Side Effects?
As of last Tuesday, I did not appear to be experiencing any of the known side effects from Vemurafenib. Because it had been a week since I began the drug study, both Keith and I couldn't help pondering the following questions:
While having dinner at friend's house on Saturday, the index finger on my left hand was so sore it was driving me crazy. Heck, I didn't spend the afternoon chopping while making dinner. I merely showed up with some vegetables to steam. Did I somehow strain my finger carrying something?
Duh! I was beginning to experience joint & muscle pain.
By Sunday, the swelling set in and I started applying ice packs to minimize the discomfort. We sure have gotten our money's worth for the 'pea packs' we purchased from CVS last August when I started this journey! Fortunately, we have become quite adept at utilizing them with ace bandages to hold them in place.
When we saw Dr. Flaherty for my 2 week check up this Tuesday, it was also discerned that the nausea I have been having is related to the Vemurafenib and not a lingering side effect of my last Gamma Knife radiation treatment at the end of January.. The good news is that sucking on crystalized ginger or peppermints helps to alleviate the nauseous feeling.
Pretty soon, I was limping because my left ankle was now part of the joint pain. At least by this point, I wasn't mistakenly attempting to attribute this to something else. In the big picture, these are mere discomforts and I have faced much bigger demons than a few aches and pains.
Plus, having Keith around always makes me better - not to mention the pleasure of anticipating Melissa coming home at the end of next week. It doesn't get much better than that!
- Does this mean the drug is not working for me?
- Should my dose of the drug be adjusted?
- Am I going to be the statistical outlier who receives the benefits of the drug but exhibits none of the associated problems?
- There is no correlation between the presence or onset of symptoms and efficacy. Some patients have not exhibited side effects for months, others present with side effects immediately. Some patients experience numerous side effects, others have very few.
- Typically, nothing regarding dosage is changed before the 28th day of treatment. Everyone starts with the same dose. Unless there is a major problem, the dose remains the same.
- Even though I love to swim in the 'overachiever pool' and have already demonstrated that I am not the typical patient with stage 4 metastatic melanoma, it is highly unlikely I will avoid all side effects.
While having dinner at friend's house on Saturday, the index finger on my left hand was so sore it was driving me crazy. Heck, I didn't spend the afternoon chopping while making dinner. I merely showed up with some vegetables to steam. Did I somehow strain my finger carrying something?
Duh! I was beginning to experience joint & muscle pain.
By Sunday, the swelling set in and I started applying ice packs to minimize the discomfort. We sure have gotten our money's worth for the 'pea packs' we purchased from CVS last August when I started this journey! Fortunately, we have become quite adept at utilizing them with ace bandages to hold them in place.
When we saw Dr. Flaherty for my 2 week check up this Tuesday, it was also discerned that the nausea I have been having is related to the Vemurafenib and not a lingering side effect of my last Gamma Knife radiation treatment at the end of January.. The good news is that sucking on crystalized ginger or peppermints helps to alleviate the nauseous feeling.
Pretty soon, I was limping because my left ankle was now part of the joint pain. At least by this point, I wasn't mistakenly attempting to attribute this to something else. In the big picture, these are mere discomforts and I have faced much bigger demons than a few aches and pains.
Plus, having Keith around always makes me better - not to mention the pleasure of anticipating Melissa coming home at the end of next week. It doesn't get much better than that!
Sunday, February 26, 2012
Giving Thanks for Our Blessings
Team Studzinski has much to be grateful for:
- fabulous support from loads of people including not just family, friends, neighbors, co-workers and folks from Detroit Golf Club but numerous others connected to them
- amazing amount of ongoing encouragement in the form of cards, blog comments, emails and text messages
- never-ending inclusion in the prayers of many
- excellent health care coverage providing access to the best medical care
- superb treatment located so close to home
- VEMURAFENIB - WONDER DRUG TO KMA!
On Sunday, March 18th, we will be attending the 10 AM mass at the Catholic church of St. Augustine/St. Monica in Detroit (the parish of our dear friend, Father Dan Trapp) to give thanks for all these blessings. We invite you to join us in church as we celebrate mass (we'll be sitting near the back) and to gather with us afterward in the church's social hall to visit. Refreshments and a light snack will be served. The church was built in the 1920's and is historically designated by both the state of Michigan and the federal government. The interior is stunning.
It is located at 4151 Seminole (off I-94 near Gratiot, East Grand Blvd and Mack). There is security present monitoring the lot and the front of the church. We encourage you to park in the fenced lot behind the church.
We look forward to seeing any one who is able to join us and can't wait to catch up with you. Contact us with any questions.
Tuesday, February 21, 2012
Believing in a Miracle Drug
Keith & I headed down to Karmanos today and I received Vemurafenib, which I shall begin taking this evening.
Hallelujah!
Anwar Sadat said: “If you don’t believe in miracles, you’re not a realist these days.”
I say "Let's all be realists."
Anwar Sadat said: “If you don’t believe in miracles, you’re not a realist these days.”
I say "Let's all be realists."
Saturday, February 18, 2012
The Long & Winding Road to Vemurafenib
Fortunately for Team Studzinski, Dr. Flaherty is the principal investigator for a new research study sponsored by Hoffmann-La Roche. 135 patients will be selected to test the efficacy of Vemurafenib in treating metastatic melanoma that has spread to the brain. Remember, Vemurafenib is the new melanoma drug that received FDA approval last August.
Enrollment criteria:
- Metastatic melanoma spread to the brain
- Melanoma cells have BRAF V600 mutation
- Present in 50% of melanoma patients, this mutation disrupts the body’s ability to control how cancer cells grow, allowing them to rapidly divide and multiply.
- Vemurafenib works by blocking the effects of the BRAF mutation
- Complete various tests and screenings
- Various signatures and approvals
Over the last few weeks, Dr. Flaherty's clinical research team has been working to enroll me as a participant as I am the perfect candidate. I clearly meet Criterion #1 and my first tumor tested BRAF positive. Done deal, right? Not exactly.
Criterion #2 proved to be a challenge as the cross section of the tumor specimen tested in August did not meet study requirements. Karmanos discovered they did not have a large enough sample from my second tumor, so they had to contact Beaumont to retrieve the appropriate cross-section from my first tumor. The sample arrived to the designated lab in Nevada on February 7th for testing. We heard BRAF positive confirmation on February 15th, the lab had a 7-10 day backlog. The timing of our Arizona vacation couldn’t have been more perfect!
Now onto Criterion #3. The tests and screenings are required to establish a baseline used to identify the presence and severity of Vemurafenib’s potential side effects (like every other drug, the list is lengthy).
Criterion #2 proved to be a challenge as the cross section of the tumor specimen tested in August did not meet study requirements. Karmanos discovered they did not have a large enough sample from my second tumor, so they had to contact Beaumont to retrieve the appropriate cross-section from my first tumor. The sample arrived to the designated lab in Nevada on February 7th for testing. We heard BRAF positive confirmation on February 15th, the lab had a 7-10 day backlog. The timing of our Arizona vacation couldn’t have been more perfect!
Now onto Criterion #3. The tests and screenings are required to establish a baseline used to identify the presence and severity of Vemurafenib’s potential side effects (like every other drug, the list is lengthy).
- Skin exam (2/16): check for presence of cutaneous squamous cell carcinoma (SCC), it manifests itself in 25-33% of patients.
- Pelvic/Abdomen/Chest scans (2/20): check for presence of subcutaneous SCC
- Electro Cardiogram (2/20): some patients experience a prolongation of the QTc interval in their heart cycle
- Blood work (2/20): establish bilirubin baseline as there is potential for injury or damage to the liver or liver cells (indicated by increased amounts of bilirubin in the blood)
Other potential side effects include:
- Common: fatigue, nausea, diarrhea, increased bilirubin in the blood, rash, SCC, scaly skin, itching, hives, hair loss, sensitive to light, sunburn, dry skin, joint/muscle pain, tingling/burning of hands and feet, loss of appetite, weight loss, headache, change in sense of taste
- Rare: basal cell carcinoma, hand/foot skin reaction, pancreatitis, eye inflammation, kidney failure, difficulty swallowing, arthritis
I am set to go to Karmanos Monday morning for the tests indicated above and a meeting with Dr. Flaherty and his research team. While I had originally expected to walk out with Vemurafenib, we got a call late Friday afternoon informing us that they do not have all the required signatures. I paged Dr. Flaherty and he promised to try and remedy this first thing Monday morning.
Stay tuned!
Sunday, February 12, 2012
Two For The Price Of One
Even though I previously had two other gamma knife radio-surgeries, the treatment on January 30th was going to be different. Dr. Kim (my radiation surgeon) would be addressing an entire tumor - rather than simply radiating the bed of a tumor that had already been resected. Yet, because my recovery for the gamma knife at the end of August and beginning of December had gone fairly well, I was not apprehensive about this procedure.
In my mind, the recuperation for this latest gamma knife would be "easier". This reasoning was based on the fact that the first and second gamma knives were proceeded by a craniotomy and this third gamma knife was not going to occur post-surgically. Unlike when the knowledge gained during the recovery from my first neurosurgery made it difficult to contemplate a second one, the first two gamma knife experiences caused no sense of dread for the third one. However, once again, my surmising turned out to be incorrect.
Several aspects of having the procedure remained the same - which was comforting.
The biggest change to the modus operandi that did not bode well was when Dr. Mittal (my neurosurgeon) appeared after my stereotactic head frame had been attached and I was in the holding area waiting for the physicists to program the computer for my radiation treatment. My gut reaction was: "This is not good."
Dr. Mittal inquired if I was able to walk with my frame on and I indicated I could. He invited us down the hall to "show us something". It was the MRI from that morning that was done in preparation for my gamma knife. He began by explaining that my smaller tumor (which we were going to leave to qualify me for the drug trial) had increased a few millimeters in the last two weeks and my larger tumor had increased several millimeters. Fortunately, it was still feasible to radiate the exponentially larger tumor.
Hhmm - so what's the bad news I thought. Well, it was that a third tumor (my fifth) had appeared Even more disconcerting was the fact that it was not visible only two weeks previously from my regular monitoring MRI and it was already close to a centimeter in size. Super.
The good news was that it was found quickly and more importantly, before my gamma knife procedure. Therefore, I was going to have both the original large tumor and the new large tumor radiated together - two treated for the price of one. Or at least two handled during the same procedure (as I am pretty certain our insurance will be billed accordingly).
In hindsight, having two pretty good sized tumors treated meant I had a much larger area of my brain radiated than in the past. This explains why the recovery was much more difficult this time - although it wasn't anything I couldn't handle. C.C. Scott said: "The human spirit is stronger than anything that can happen to it." and I agree.
While we were not thrilled by the latest development, it only served to underscore the need for me to begin taking Vemurafinib as quickly as possible. Hopefully, this will happen sometime in the next week and this new "miracle" drug will be effective for me so I can KMA!
In my mind, the recuperation for this latest gamma knife would be "easier". This reasoning was based on the fact that the first and second gamma knives were proceeded by a craniotomy and this third gamma knife was not going to occur post-surgically. Unlike when the knowledge gained during the recovery from my first neurosurgery made it difficult to contemplate a second one, the first two gamma knife experiences caused no sense of dread for the third one. However, once again, my surmising turned out to be incorrect.
Several aspects of having the procedure remained the same - which was comforting.
- same location
- same check-in process
- same pre-op nurses (Connie & Marilyn)
- different anesthesiologist
- different 2nd physicist
- different procedure nurse
The biggest change to the modus operandi that did not bode well was when Dr. Mittal (my neurosurgeon) appeared after my stereotactic head frame had been attached and I was in the holding area waiting for the physicists to program the computer for my radiation treatment. My gut reaction was: "This is not good."
Dr. Mittal inquired if I was able to walk with my frame on and I indicated I could. He invited us down the hall to "show us something". It was the MRI from that morning that was done in preparation for my gamma knife. He began by explaining that my smaller tumor (which we were going to leave to qualify me for the drug trial) had increased a few millimeters in the last two weeks and my larger tumor had increased several millimeters. Fortunately, it was still feasible to radiate the exponentially larger tumor.
Hhmm - so what's the bad news I thought. Well, it was that a third tumor (my fifth) had appeared Even more disconcerting was the fact that it was not visible only two weeks previously from my regular monitoring MRI and it was already close to a centimeter in size. Super.
The good news was that it was found quickly and more importantly, before my gamma knife procedure. Therefore, I was going to have both the original large tumor and the new large tumor radiated together - two treated for the price of one. Or at least two handled during the same procedure (as I am pretty certain our insurance will be billed accordingly).
In hindsight, having two pretty good sized tumors treated meant I had a much larger area of my brain radiated than in the past. This explains why the recovery was much more difficult this time - although it wasn't anything I couldn't handle. C.C. Scott said: "The human spirit is stronger than anything that can happen to it." and I agree.
While we were not thrilled by the latest development, it only served to underscore the need for me to begin taking Vemurafinib as quickly as possible. Hopefully, this will happen sometime in the next week and this new "miracle" drug will be effective for me so I can KMA!
Tuesday, February 7, 2012
Hello From Arizona
Keith and I typically go on vacation each winter for approximately 12 days in February. We stay with our friends Tom and Mary Devlin who retired to Arizona 6 years years ago. It is the perfect situation where both Keith and I get along equally well with both of them - plus, we like to do the same things. Keith and Tom go golfing every day while Mary and I do whatever we please: work out, shop, cook, etc.
We were scheduled to visit them from February 14th through the 26th and were obviously looking forward to it after these last 5 or 6 months. When my latest two tumors were discovered and the decision was made to treat the brain cancer by taking Vemurafinib, it eliminated the possibility of going away. I would need to be closely monitored as there are many side effects associated with the drug.
Since it was going to take a few weeks to complete the process to enable me to enter the drug trial, we decided to get the heck out of town while it was still possible for me to travel. We flew out last Saturday and plan to remain here until:
My recovery from this last gamma knife procedure has been a little more problematic as compared to my first two, but it isn't anything I can't handle. Thank goodness the Devlins were willing and able to juggle their schedule to accommodate us coming here and my doctors allowed me to go. I feel so lucky we had the opportunity to escape for a little while - not only to my benefit, but for Keith and Melissa too.
We remain most grateful for all the continued support. The words of encouragement whether via cards or comments on the blog are greatly appreciated. Remember, the easiest way to post on the blog is as "Anonymous" and then signing your name at the end of your message.
Many thanks for everyone's prayers. We are in the planning stages for a mass at St. Monica and St. Augustine (the parish of my friend Father Dan Trapp here in Detroit) and we will pass on the details once we have a date selected.
We were scheduled to visit them from February 14th through the 26th and were obviously looking forward to it after these last 5 or 6 months. When my latest two tumors were discovered and the decision was made to treat the brain cancer by taking Vemurafinib, it eliminated the possibility of going away. I would need to be closely monitored as there are many side effects associated with the drug.
Since it was going to take a few weeks to complete the process to enable me to enter the drug trial, we decided to get the heck out of town while it was still possible for me to travel. We flew out last Saturday and plan to remain here until:
- I am accepted into the current study by formally meeting the protocol - after which, I can receive Vemarafinib.
- We fly home on February 15th - which ever comes first.
My recovery from this last gamma knife procedure has been a little more problematic as compared to my first two, but it isn't anything I can't handle. Thank goodness the Devlins were willing and able to juggle their schedule to accommodate us coming here and my doctors allowed me to go. I feel so lucky we had the opportunity to escape for a little while - not only to my benefit, but for Keith and Melissa too.
We remain most grateful for all the continued support. The words of encouragement whether via cards or comments on the blog are greatly appreciated. Remember, the easiest way to post on the blog is as "Anonymous" and then signing your name at the end of your message.
Many thanks for everyone's prayers. We are in the planning stages for a mass at St. Monica and St. Augustine (the parish of my friend Father Dan Trapp here in Detroit) and we will pass on the details once we have a date selected.
Tuesday, January 31, 2012
Back At Home
Talked to mom & dad on their way home from Karmanos. Everything went smoothly today. A nap is definitely on the agenda for the afternoon.
Thanks in advance to the members of Peggy's posse that will be helping out over the next few days and nights!
-Melissa
Thanks in advance to the members of Peggy's posse that will be helping out over the next few days and nights!
-Melissa
Monday, January 30, 2012
Thank Goodness Keith is Part of Team Studzinski
Imagine my surprise last Monday when I met with my brain surgeon and I learned that I actually have two new brain tumors. Both are located near the hippocampus. The one on the right side is about 1 cm and the one on the left side is approximately 6 mm.
Dr. Mittal recommended using gamma knife to get rid of them rather than 1) resecting them - as a third craniotomy in such a short time is not advised. 2) treating them with whole brain radiation since this represents the trump card he would like to save until necessary.
When I met with my oncologist on Tuesday, he indicated that it is time to "stop chasing the tumors" and the best course of action would be to "get ahead of the tumors". My options to do so would involve using whole brain radiation (which would potentially destroy the other cancer cells that are present but not yet visible) or to begin taking the drug Vemurafinib - which the FDA just approved last August (to shrink the present tumors and inhibit the growth of new ones).
When Keith asked what Dr. Flaherty what he would do if it was his wife in my situation, he said he would have her take the drug.
The thing that causes the most concern about selecting to take the drug as treatment is the size of the larger tumor. At 1 cm, it is already at the size limit for successful treatment via gamma knife radiosurgery. Since it will take a few weeks to navigate the protocol required to receive the cancer drug, and because the tumor grew to this size in only 4 weeks, there is the possibility that the tumor will become so large it would have to be resected via craniotomy in the future.
The catch 22 is that you can't qualify for the drug unless you have a brain tumor of at least 5 mm. In a perfect world, we would destroy the current tumors and take the drug to prevent new ones. However, the only way to tell if the drug works for me is to witness the shrinking of the tumors.
My brilliant husband proposed the following: could we gamma knife only the large tumor to eliminate the worry? Thereby leaving the smaller one to keep me eligible for the clinical trial for Vemurafinib. Dr. Flaherty agreed to discuss it with Dr. Mittal, who not only concurred, but presented the idea to the tumor board who approved the idea.
Therefore, I have already signed the paperwork to be in the current research study for Vemurafinib (hopefully I can obtain the drug within a few weeks) and I will be at Karmanos at 6 AM on Tuesday to receive gamma knife on my larger tumor.
It's wonderful to have options as I make this journey and a blessing to have people to support us through this difficult time. Winston Churchill said: "If you are going through hell, keep going." Melanoma better get out of the way because I'm still coming.
Dr. Mittal recommended using gamma knife to get rid of them rather than 1) resecting them - as a third craniotomy in such a short time is not advised. 2) treating them with whole brain radiation since this represents the trump card he would like to save until necessary.
When I met with my oncologist on Tuesday, he indicated that it is time to "stop chasing the tumors" and the best course of action would be to "get ahead of the tumors". My options to do so would involve using whole brain radiation (which would potentially destroy the other cancer cells that are present but not yet visible) or to begin taking the drug Vemurafinib - which the FDA just approved last August (to shrink the present tumors and inhibit the growth of new ones).
When Keith asked what Dr. Flaherty what he would do if it was his wife in my situation, he said he would have her take the drug.
The thing that causes the most concern about selecting to take the drug as treatment is the size of the larger tumor. At 1 cm, it is already at the size limit for successful treatment via gamma knife radiosurgery. Since it will take a few weeks to navigate the protocol required to receive the cancer drug, and because the tumor grew to this size in only 4 weeks, there is the possibility that the tumor will become so large it would have to be resected via craniotomy in the future.
The catch 22 is that you can't qualify for the drug unless you have a brain tumor of at least 5 mm. In a perfect world, we would destroy the current tumors and take the drug to prevent new ones. However, the only way to tell if the drug works for me is to witness the shrinking of the tumors.
My brilliant husband proposed the following: could we gamma knife only the large tumor to eliminate the worry? Thereby leaving the smaller one to keep me eligible for the clinical trial for Vemurafinib. Dr. Flaherty agreed to discuss it with Dr. Mittal, who not only concurred, but presented the idea to the tumor board who approved the idea.
Therefore, I have already signed the paperwork to be in the current research study for Vemurafinib (hopefully I can obtain the drug within a few weeks) and I will be at Karmanos at 6 AM on Tuesday to receive gamma knife on my larger tumor.
It's wonderful to have options as I make this journey and a blessing to have people to support us through this difficult time. Winston Churchill said: "If you are going through hell, keep going." Melanoma better get out of the way because I'm still coming.
Thursday, January 26, 2012
Game Plan In Development
Just wanted to give everyone an update on where things stand with Peggy.
As noted in Friday's post, the melanoma is back and continues to be aggressive. Peggy's care team wants to devise an appropriately aggressive response. There are a couple of different scenarios being considered.
Peggy's case was presented on Wednesday at the weekly tumor board meeting. This will ensure her care team develops the best possible game plan. They expect to provide a recommendation between Friday and Monday.
Stay tuned.
-Keith & Melissa
As noted in Friday's post, the melanoma is back and continues to be aggressive. Peggy's care team wants to devise an appropriately aggressive response. There are a couple of different scenarios being considered.
Peggy's case was presented on Wednesday at the weekly tumor board meeting. This will ensure her care team develops the best possible game plan. They expect to provide a recommendation between Friday and Monday.
Stay tuned.
-Keith & Melissa
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