I haven't blogged in a few days/week as I have been waiting to find out some information from my oncologist before blogging.
Last week I called my neurosurgeon's office to find out about my EEG results and spoke with his nurse. They informed me they didn't have the results back yet but would call when they get them - haven't heard anything yet! (I had an EEG because I keep BUGGING my neurosurgeon about driving again... they need to find out if I have any seizure activity before they will make that decision.) The nurse also told me that I was discussed at the tumor board meeting that week and that both my neurosurgeon and the radiation oncologist were there and thought it might be better to have me go on the newly FDA approved medication (also the one that I went down to Detroit to get in on the clinical trial). But, ultimately, it would have to be discussed with my oncologist and she would have to agree to it.
Today I had an appointment at the oncologist office with the PA. My oncologist was also there today so Kurt and I first met with the PA regarding my check up (blood work was still VERY good, my potassium was above normal now and everything was good). I've been feeling very well this entire time since my 2nd treatment - a bit of a rash and my hip can get a bit painful (which has been normal for over a year) but I can handle that versus being sick, etc. Can't complain! Anyway, the oncologist came in and we discussed both options. Since I have only had two treatments of Ipi (and you should have four treatments to see how you react), she would like to keep me on that. She also said that studies show that people may have tumors grow during the 2nd-3rd treatment of Ipi but that once they are done with all 4 doses (and sometimes even months later), they may see that it works well and shrinks the tumors. She also said that while the new drug does show that the tumors seem to respond well and shrink fairly quickly, the trials have shown that the tumors can be back within 6-9 months and Ipi has a higher rate of keeping your cancer response for a much longer period of time - sometimes years!
So, the final decision is that since I haven't been overly sick and the Ipi seems to have some good responses in my body (like my hip hurting - as they figure that the Ipi is in the hip and causing some inflammation so that is why it is painful), I will continue my 3rd treatment next Tuesday as long as my blood work comes back good again! We can ALWAYS go to the other medication but for now, we will continue to finish the 4 treatments of Ipi.
My family and I put a lot of trust into the three wonderful doctors (plus countless other staff) who work together to make decisions that best meet my medical needs at this time! I know when I see them, they are all thinking that I am only 36 years old with two young children and they want to do what it is my best interest to keep me around for as many years as possible!
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Monday, August 29, 2011
Sunday, August 21, 2011
Living in A Wonderful Community with Caring People - 8/21/2011
I feel bad that it has taken me a couple of days/weeks to write this blog and get these pictures up...
I am so lucky to live in a wonderful community - well, actually to have grown up in Gwinn and now live in Negaunee Township. Both communities (and surrounding areas) have been overwhelmingly generous to our family!
The first picture that I will post is one of Casey and I. She is giving me a check for the proceeds of the bracelets that the U.P. P!nk Power purchased and sold (along with so many others). (Thank you to everyone who sold, purchased, wore, etc. the bracelets - and a special thank you to Casey Arkens! Love you!)
The second picture is a sign that was put on a hole at the golf course at Red Fox Run for the Cancer Care of Marquette County Golf outing. The picture is of me and my daughter Ashley along with golf partners (and donors of the hole): Sally Searle, Peggy Mullen, Pat Makela and Laurie Van Damme (my parents' neighbor). Casey Arkens also donated but did not golf and was not in the picture!
Thank you to everyone for the love, support and encouragement! We are forever grateful!!!!
I am so lucky to live in a wonderful community - well, actually to have grown up in Gwinn and now live in Negaunee Township. Both communities (and surrounding areas) have been overwhelmingly generous to our family!
The first picture that I will post is one of Casey and I. She is giving me a check for the proceeds of the bracelets that the U.P. P!nk Power purchased and sold (along with so many others). (Thank you to everyone who sold, purchased, wore, etc. the bracelets - and a special thank you to Casey Arkens! Love you!)
The second picture is a sign that was put on a hole at the golf course at Red Fox Run for the Cancer Care of Marquette County Golf outing. The picture is of me and my daughter Ashley along with golf partners (and donors of the hole): Sally Searle, Peggy Mullen, Pat Makela and Laurie Van Damme (my parents' neighbor). Casey Arkens also donated but did not golf and was not in the picture!
Thank you to everyone for the love, support and encouragement! We are forever grateful!!!!
Wednesday, August 17, 2011
You Take The Good, You Take the Bad (I LOVED that show growing up) - 8/17/2011
Today I went for an MRI of my brain since it's been over three months since my first round of them. (I was glad to see that my high school classmate was again doing my MRI!) I was also very lucky that they rescheduled my MRI so that immediately following it, I was scheduled to see my neurosurgeon to get the results. We found out that the new MRI shows three different small spots of concern to him. He thinks one COULD be a blood vessel based on where it was but that the other two are spots that they are going to have to watch. He was going to talk to the radiology oncologist to look at the results and then in 4-6 weeks, I will go back in for an MRI and follow-up appointment with him.
This, obviously, was not the best news we could hear... in fact, when the doctor walked out of the room, we may have heard an explicit come out of Kurt's mouth! :) I asked if they found these spots on the next MRI, what would be the next steps. He said that they could again do the stereotactic radiation (with the halo and a one day radiation therapy) or they could do a full brain radiation - which scares me a bit also because of some of the capacities you can lose from having full brain radiation too much over a period of time.
I like to think there is ALWAYS some good in dealing with bad situations or news - I am glad to see that the three spots are all on the right side of my brain. This means that it should not affect my speech as that is what the left side of the brain is responsible for!
We also heard the good news that the drug that I went down to Detroit to get on a clinical trial for was FDA approved today. (The drug's name was Vemurafenib which has now changed ... if you are able to view my Facebook page, I have a link to some information for that!) The thing that the doctor in Detroit said was that neither Yervoy (Ipi) or this drug have been tested or watched to see how they react to someone with metastatic melanoma of the brain (or brain tumors that are melanoma). He did say that Ipi has a higher molecular "build" so it would take longer to get to the brain to work on those tumors... but did not say that he thought it couldn't get to the brain. We are hopeful that with further treatments, we might start seeing some results on my brain.
Of course, I am anxious to drive again some day so I asked the question of how long I would need to be on Keppra (which is an anti-seizure medication). They are sending me for an EEG tomorrow to see if I previously had or currently have had any seizure activity. He said he would call me within a few days after that test with the results - but didn't really give me any definite ideas on when I would be able to drive! :)
Next Monday I am scheduled to see my oncologist for a follow up visit after my 2nd treatment. I will be asking her once again if I could try to go back to work - even if it is only one week on and a few weeks off. I'd like to get some type of normal back in my life... and with that, I think it would be good for me!
For now, I will be praying that those spots were just "spots" and they will be gone in a month! Thank you to everyone for your concern/care/prayers/etc.
This, obviously, was not the best news we could hear... in fact, when the doctor walked out of the room, we may have heard an explicit come out of Kurt's mouth! :) I asked if they found these spots on the next MRI, what would be the next steps. He said that they could again do the stereotactic radiation (with the halo and a one day radiation therapy) or they could do a full brain radiation - which scares me a bit also because of some of the capacities you can lose from having full brain radiation too much over a period of time.
I like to think there is ALWAYS some good in dealing with bad situations or news - I am glad to see that the three spots are all on the right side of my brain. This means that it should not affect my speech as that is what the left side of the brain is responsible for!
We also heard the good news that the drug that I went down to Detroit to get on a clinical trial for was FDA approved today. (The drug's name was Vemurafenib which has now changed ... if you are able to view my Facebook page, I have a link to some information for that!) The thing that the doctor in Detroit said was that neither Yervoy (Ipi) or this drug have been tested or watched to see how they react to someone with metastatic melanoma of the brain (or brain tumors that are melanoma). He did say that Ipi has a higher molecular "build" so it would take longer to get to the brain to work on those tumors... but did not say that he thought it couldn't get to the brain. We are hopeful that with further treatments, we might start seeing some results on my brain.
Of course, I am anxious to drive again some day so I asked the question of how long I would need to be on Keppra (which is an anti-seizure medication). They are sending me for an EEG tomorrow to see if I previously had or currently have had any seizure activity. He said he would call me within a few days after that test with the results - but didn't really give me any definite ideas on when I would be able to drive! :)
Next Monday I am scheduled to see my oncologist for a follow up visit after my 2nd treatment. I will be asking her once again if I could try to go back to work - even if it is only one week on and a few weeks off. I'd like to get some type of normal back in my life... and with that, I think it would be good for me!
For now, I will be praying that those spots were just "spots" and they will be gone in a month! Thank you to everyone for your concern/care/prayers/etc.
Sunday, August 14, 2011
A New Chapter - 8/14/2011
As I was thinking about it today, I thought about how Kurt will be going back to work tomorrow after being off since May 10th with me and also that Nathan will be going to band class these next two weeks. And then in only a few short weeks, the kids will be back in school and I will be left at home alone - well, with Zoey the dog! It's like a new chapter to this adventure is starting... I am happy (sort of envious actually) for Kurt that he is going back to some 'normal' life but it will be very different because he's responsible for a lot of things around here... like driving, taking me to appointments, etc. I am lucky to have great parents and inlaws that are definitely stepping up to the tasks that we have to get done! (I will definitely miss having Kurt at home with us though!)
Of course, this week is full of appointments for me and the kids - doctors/dentists/band class/etc. I will be going in on Monday morning to see how my blood work I had done today turned out and see if I am able to get my 2nd Ipi treatment. Since I have been under the weather for a few weeks - and not eating the best - I would not be at all surprised if my levels are low. But hopefully high enough that I can have a treatment!
I will be going in on Tuesday for an MRI of my head - can you believe it's been three months since my surgeries? It's time to see how things are and how the radiation therapy went. A little nervous, anxious, etc. for the results of this.
And, hopefully somewhere in the time that I will have during the day, I will get my 'thank you' cards done to some people who sent us things far too long ago - I am sorry for the delay in getting my thank you's out to you!!!!!
Hoping for luck with my counts tomorrow morning!
Of course, this week is full of appointments for me and the kids - doctors/dentists/band class/etc. I will be going in on Monday morning to see how my blood work I had done today turned out and see if I am able to get my 2nd Ipi treatment. Since I have been under the weather for a few weeks - and not eating the best - I would not be at all surprised if my levels are low. But hopefully high enough that I can have a treatment!
I will be going in on Tuesday for an MRI of my head - can you believe it's been three months since my surgeries? It's time to see how things are and how the radiation therapy went. A little nervous, anxious, etc. for the results of this.
And, hopefully somewhere in the time that I will have during the day, I will get my 'thank you' cards done to some people who sent us things far too long ago - I am sorry for the delay in getting my thank you's out to you!!!!!
Hoping for luck with my counts tomorrow morning!
Tuesday, August 9, 2011
Outcome of Detroit Visit on Mon, Aug 8th - 8/9/11
This may be a quick blog that I'll update further later as I am typing it with my iPhone ;)
Yesterday we went to Karmanos Medical Center and met with the doctor that specializes in melanoma. (My oncologist in Marquette worked under him before coming to Marquette!). The whole experience was a bit overwhelming (this is my new word during this whole experience). After discussing my medical history with the doctor, he had me get dressed ... And he went to call my oncologist. He came back in and discussed the clinical trial information with us - basically the drug is awaiting FDA approval anytime between July and October. He said that the drug has good response rates but not everyone responds the same. He felt some of my symptoms from the Ipi (rash, fevers, etc), indicate that the Ipi is working.
All in all, there was some testing on my tumor that needed to be done by some place in California prior to getting in on the trial - this was not done yet. So, based on their conversation, the doctors concluded I should continue on the Ipi treatments and hope this drug will be FDA approved so I could just get it in Marquette if needed. (He also indicated that he would push for me to get on this trial quicker - or drug is FDA approved - if I was sicker... So I guess that is good news!)
So, I will be calling my oncologist to schedule an appointment for my next treatment.
Yesterday we went to Karmanos Medical Center and met with the doctor that specializes in melanoma. (My oncologist in Marquette worked under him before coming to Marquette!). The whole experience was a bit overwhelming (this is my new word during this whole experience). After discussing my medical history with the doctor, he had me get dressed ... And he went to call my oncologist. He came back in and discussed the clinical trial information with us - basically the drug is awaiting FDA approval anytime between July and October. He said that the drug has good response rates but not everyone responds the same. He felt some of my symptoms from the Ipi (rash, fevers, etc), indicate that the Ipi is working.
All in all, there was some testing on my tumor that needed to be done by some place in California prior to getting in on the trial - this was not done yet. So, based on their conversation, the doctors concluded I should continue on the Ipi treatments and hope this drug will be FDA approved so I could just get it in Marquette if needed. (He also indicated that he would push for me to get on this trial quicker - or drug is FDA approved - if I was sicker... So I guess that is good news!)
So, I will be calling my oncologist to schedule an appointment for my next treatment.
Monday, August 1, 2011
A Lot Going On - 8/1/2011
The last week has been pretty busy, emotional, etc....
Last Wednesday night the kids and I went to my Auntie Kris and Uncle Rich's camp in Gwinn to visit with my Uncle Sonny, Auntie Norma and other family members. We spent the night in Gwinn at my parents. (Kurt headed out to Houghton/Calumet with other firefighters to golf and have fun before firemen's tourneys!) I left Thursday with Michelle Kontio and Lisa Cory to meet our husbands. We spent the next few days at parades, the firemen races, etc. It was fun but I was definitely tired when I got home on Friday afternoon/evening. On Saturday evening, we went to a wedding reception for one of my cousins and I saw a bunch of my relatives who were here visiting! Sunday I spent the afternoon with my cousin, Laurie.
This past couple of weeks I have talked to a few of those close to me about some of the things going on and also some of my emotions. I have shed many tears - must be more emotional this week! When I talk to people throughout this whole process, I've tried to remain more positive about my future... but believe me when I say that I think daily about what my future could hold and how I might not be around for things. Every event gives me thoughts... Like Nathan's birthday party just a few weeks back when I thought that I might not be here for his 12th birthday..." As I have said MANY times before, I BELIEVE in miracles and I hope that Monday will be the start of one of these so I can be here for MANY more of my kids events/birthdays/etc. (See, again I am tearing up...)
Tonight, our family is going to watch Kurt's softball team play. Kurt has not been able to play this year due to all going on. And, it seems that every time they have called to tell us where they play and to come watch, I wasn't feeling well or we had other things going on. Last week we were not able to go and one of the team members, Brian, (who always calls to tell Kurt where they are playing), sent Kurt the following picture by text after the game:
We had NO idea they were doing this! (Yet another moment of tears... I am kind of glad I was not there to see this as I would have been a puddle!) Again, another act of kindness that I cannot thank them enough for!
On Monday, August 8th, Kurt (the love of my life) and I will be celebrating our 13th anniversary by heading down for an appointment with the oncologist who is doing this clinical trial. My oncologist here in Marquette worked directly with the oncologist down in Detroit at Karmanos Cancer Center. Today I received information from there - mostly told us where to go to get there and also a patient health history form to fill out. I will post more information on our trip home after meeting with this doctor... hope to have more information on what we can expect!
Last Wednesday night the kids and I went to my Auntie Kris and Uncle Rich's camp in Gwinn to visit with my Uncle Sonny, Auntie Norma and other family members. We spent the night in Gwinn at my parents. (Kurt headed out to Houghton/Calumet with other firefighters to golf and have fun before firemen's tourneys!) I left Thursday with Michelle Kontio and Lisa Cory to meet our husbands. We spent the next few days at parades, the firemen races, etc. It was fun but I was definitely tired when I got home on Friday afternoon/evening. On Saturday evening, we went to a wedding reception for one of my cousins and I saw a bunch of my relatives who were here visiting! Sunday I spent the afternoon with my cousin, Laurie.
This past couple of weeks I have talked to a few of those close to me about some of the things going on and also some of my emotions. I have shed many tears - must be more emotional this week! When I talk to people throughout this whole process, I've tried to remain more positive about my future... but believe me when I say that I think daily about what my future could hold and how I might not be around for things. Every event gives me thoughts... Like Nathan's birthday party just a few weeks back when I thought that I might not be here for his 12th birthday..." As I have said MANY times before, I BELIEVE in miracles and I hope that Monday will be the start of one of these so I can be here for MANY more of my kids events/birthdays/etc. (See, again I am tearing up...)
Tonight, our family is going to watch Kurt's softball team play. Kurt has not been able to play this year due to all going on. And, it seems that every time they have called to tell us where they play and to come watch, I wasn't feeling well or we had other things going on. Last week we were not able to go and one of the team members, Brian, (who always calls to tell Kurt where they are playing), sent Kurt the following picture by text after the game:
 |
| Hoover's Softball Team - Taken Monday, July 25, 2011 |
We had NO idea they were doing this! (Yet another moment of tears... I am kind of glad I was not there to see this as I would have been a puddle!) Again, another act of kindness that I cannot thank them enough for!
On Monday, August 8th, Kurt (the love of my life) and I will be celebrating our 13th anniversary by heading down for an appointment with the oncologist who is doing this clinical trial. My oncologist here in Marquette worked directly with the oncologist down in Detroit at Karmanos Cancer Center. Today I received information from there - mostly told us where to go to get there and also a patient health history form to fill out. I will post more information on our trip home after meeting with this doctor... hope to have more information on what we can expect!
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