I apologize for the delay in this update. I have been patiently awaiting news, as well as further plans.
Upon returning from NIH, Dr. Meyerle (the eye Dr. at NIH) highly recommended that I do further laser treatment with my eye doc here - not to treat the optic nerve tumor, but to treat the peripheral retinal tumors. I did this on the Monday I returned (3/10). My local doctor was somewhat concerned because there was still bleeding and swelling. Still, he followed their recommendations, although he was worried I may have distorted vision again. So far, so good, due to the steroid pills and drops he gave me. My only concern is that I still see many floaters, as well as the previous blind spots - which once again is causing headaches, dizziness & nausea.
I have finally received most of my records from NIH & thankfully, my brain and spine are very stable at this time. My kidneys have increased tumor growth bilaterally, yet we will just continue to watch them until they grow larger. My pancreatic cysts have doubled in size in the past two years, which is probably an additional reason for my increased nausea. These cysts are benign & not dangerous unless they become solid. My tumors are ALL benign except for my issues with cystic changes in the kidney and pancreas, if and when they should become solid. Some tumors in my kidneys have become solid, but they are too small to do surgery at this time. My kidney function is already fair to poor, so I don't want to risk losing any more function by operating at this time.
My heart is normal! Yippee - there is one normal part of me : )
Another thing I have learned is that I was not rejected from the study due to my tumors (or changes in them). It was more due to the fact that it is not yet proven if this drug will even work on optic nerve lesions. They feel that it is more of a risk for me to take a toxic drug with all of my other issues when there may be no benefit. If, on the other hand, they find this drug to be beneficial, I will then be reconsidered for the trial. My search continues for other options. There may possibly be something opening at MD Anderson in Texas, but the Dr. I need to speak with is currently out of the country. Dr. Meyerle is hopefully going to contact this Dr. about my situation and keep me in the loop.
Everyone asks if there is anything I need. The only thing I need is for you to all keep praying that my vision will not decrease while I wait for a treatment...
I am looking forward to the nice spring weather! If nothing else, that should make us all feel a little better : ) I'm still continuing my nutrition kick. If any of you have any other alternative ideas, I am open for suggestions! My "life story" is now in progress and will be "published" on my blog soon.
Love, Kim
Wednesday, March 18, 2009
Wednesday, March 11, 2009
Still waiting for a YES
Today my eye Dr. tried to contact the eye Dr. at NIH for a more in-depth reason for my denial for the clinical trial. He hopes to get more answers and find out how great a risk I really am for a brain hemorrhage {a percentage risk}. I'm also trying to find out if stem cell research will be of any use for my eye problems. I am still currently awaiting the progress notes from all the consults, as well as discs of my scans, so that I will have a better understanding as to why I was rejected. They should arrive Friday or Saturday. I am still finding myself very frustrated without the answers and have no contact numbers of the physicians who made the decision. As far as I am concerned, it is not a done deal yet until I speak with a neurosurgeon for a more detailed explanation. In the meantime, I have decided to focus on eating better and maybe trying some alternative therapies. Once I get more answers from NIH, I will begin looking at more clinical trials that may be available internationally. Stay tuned...
It isn't about me anymore... (e-mail from 3/10/09)
the update . . . . Oh, where to begin . . . We did arrive back very late Friday night and werefeeling good about things. For those of you that don't have the background, thesigns were positive that I would be able to start the trial chemo drug thiscurrent week and there was great relief for having completed all the tests.On Monday, (yesterday,) I made a visit to my eye doctor for him to laser all thetumors in my right eye prior to starting the drug (this does not include theoptic nerve or macula, these are untouchables). The Doctors at NIH were theones that had suggested continuing the treatment he was doing as it was thecorrect treatment for these other eye tumors. After having the laser done and on my way home, the phone rang and it was NIH.It was not good news. After the doctors looked at my scans from Friday nightand all the doctors pow wowed, they determined that it was too much of a riskfor bleeding or a stroke due to my brain tumors. This was frustrating andshocking given the clearance that had been told to us while we were at NIH.We continue to brain storm and are trying to get more information about why Idid not make it into the trial. I have not given up 100% hope yet, but I thinkwe will know more details as some days go on. I plan to speak to the NIHneurosurgeon after receiving the MRI results.I believe things happen for a reason, so stay tuned for the next episode! Saysome prayers that research progresses rapidly. All My Best-Kim
It is STILL all about ME!!! (e-mail from 3/6/09)
Hello to All From Bethesda (Yes, I am STILL HERE!!!!)
After a grueling week we have confirmed that I have some loose screws, oh you thought I was talking about my head . . . WRONG, they are in my foot! (oh, but I still have the hole in my head.)
Thursday was our big day to get out, we were hoping more than just out of the hospital, but a one hour doctor meeting turned into a day of tests and doctor visits which took eleven hours. The only thing left unchecked on my body are my teeth and tits. I was literally checked from head to toe and A LOT of places in between. The worst part was that they cancelled my MRI brain scans due to a probable loose screw in my recently repaired right foot. Due to medical/legal/security issues we had to put off the scans which I thought would mean an additional trip out east next week. We were able to escape the hotel after a fire drill from a guest cooking lemon chicken for dinner! We went and had a spectacular dinner at Mon Ami Gabi and did manage to enjoy ourselves for our big night out.
Today (which I still think is Friday) found us at Neurology for a neurosurgeon visit and neurology consult regarding the headaches. I received clearance as it appears my brain stem tumor and spinal cord remain stable. Still needed the additional MRIs to check rest of cerebelum and inner ear for possible tumor. After FEDEXing the foot scan the night before, we did receive the blessing from the foot doctor that MRIs are safe and will not effect the loose screws in my foot. We then were on our way to come home early when MRI decided that they would squeeze me in to avoid a further trip. That is good news, but the two scans left had to be at least six hours apart for some contrast to leave the inner ear. This brings me to the present time, as we write this waiting for the last MRI. The bad news is that the flights out of here are pretty scarce after 7:00. Our only option became a 10:15 flight back to the midwest.
Bottom line is that the clinical trial group is going to pow wow about the protocol for me to start the drug possibly next week. This assumes yesterdays bloodwork was normal and MRIs from today are good. If protocol allows, I may be able to avoid a trip out and start the drug at home.
Pray our flight is on time and smooth!
The Weary Travellers-
Kim and Nancy
After a grueling week we have confirmed that I have some loose screws, oh you thought I was talking about my head . . . WRONG, they are in my foot! (oh, but I still have the hole in my head.)
Thursday was our big day to get out, we were hoping more than just out of the hospital, but a one hour doctor meeting turned into a day of tests and doctor visits which took eleven hours. The only thing left unchecked on my body are my teeth and tits. I was literally checked from head to toe and A LOT of places in between. The worst part was that they cancelled my MRI brain scans due to a probable loose screw in my recently repaired right foot. Due to medical/legal/security issues we had to put off the scans which I thought would mean an additional trip out east next week. We were able to escape the hotel after a fire drill from a guest cooking lemon chicken for dinner! We went and had a spectacular dinner at Mon Ami Gabi and did manage to enjoy ourselves for our big night out.
Today (which I still think is Friday) found us at Neurology for a neurosurgeon visit and neurology consult regarding the headaches. I received clearance as it appears my brain stem tumor and spinal cord remain stable. Still needed the additional MRIs to check rest of cerebelum and inner ear for possible tumor. After FEDEXing the foot scan the night before, we did receive the blessing from the foot doctor that MRIs are safe and will not effect the loose screws in my foot. We then were on our way to come home early when MRI decided that they would squeeze me in to avoid a further trip. That is good news, but the two scans left had to be at least six hours apart for some contrast to leave the inner ear. This brings me to the present time, as we write this waiting for the last MRI. The bad news is that the flights out of here are pretty scarce after 7:00. Our only option became a 10:15 flight back to the midwest.
Bottom line is that the clinical trial group is going to pow wow about the protocol for me to start the drug possibly next week. This assumes yesterdays bloodwork was normal and MRIs from today are good. If protocol allows, I may be able to avoid a trip out and start the drug at home.
Pray our flight is on time and smooth!
The Weary Travellers-
Kim and Nancy
It is all about me! (e-mail from 3/4/09)
Hello Friends and Family!
After eleven hours straight of being poked and proded in the eye and other various parts of my body we made it back so the update may find me a little punchy!
The marathon started at the eye clinic and ended at the eye clinic. It was not good news as I learned that I have yet another issue which is a Macular Hole in the center of the eye. It shouldn't affect the study, but something that will need addressing. The way it is fixed is with an outpatient surgery which doesn't sound too bad, but the recovery will leave me in the dark with my head face down for at least seven days, oh what fun! Oh, and that would pretty much guarantee another surgery to repair the cataract which it will trigger. The optic nerve tumor is impressing all the doctors with its size, but all the doctors agree that there is no successful way to treat them. There has been a lot of scar tissue on the retina which most likely caused the hole. It is somthing that we will learn more about in the next few days, but likely they will want to watch how/if it progresses in the next few months.
Met with a team of doctors and came to the conclusion that they don't want us to go to DC tomorrow and have fun, they think it would be more fun to have more tests, Yipee! It became obvious that I would not be able to start the drug this week because all the test results would not be complete. The doctors still have many questions before they will approve me for the study. Say your prayers that we get more answers instead of more questions so they can determine if this is right for me.
Not sure exactly what tomorrow will bring other than more tests. We are still managing to laugh through all the frustrations since there really isn't anything else to do. Our goal tomorrow is to try and eat somewhere other than the hospital.
Love to All-
Kim
After eleven hours straight of being poked and proded in the eye and other various parts of my body we made it back so the update may find me a little punchy!
The marathon started at the eye clinic and ended at the eye clinic. It was not good news as I learned that I have yet another issue which is a Macular Hole in the center of the eye. It shouldn't affect the study, but something that will need addressing. The way it is fixed is with an outpatient surgery which doesn't sound too bad, but the recovery will leave me in the dark with my head face down for at least seven days, oh what fun! Oh, and that would pretty much guarantee another surgery to repair the cataract which it will trigger. The optic nerve tumor is impressing all the doctors with its size, but all the doctors agree that there is no successful way to treat them. There has been a lot of scar tissue on the retina which most likely caused the hole. It is somthing that we will learn more about in the next few days, but likely they will want to watch how/if it progresses in the next few months.
Met with a team of doctors and came to the conclusion that they don't want us to go to DC tomorrow and have fun, they think it would be more fun to have more tests, Yipee! It became obvious that I would not be able to start the drug this week because all the test results would not be complete. The doctors still have many questions before they will approve me for the study. Say your prayers that we get more answers instead of more questions so they can determine if this is right for me.
Not sure exactly what tomorrow will bring other than more tests. We are still managing to laugh through all the frustrations since there really isn't anything else to do. Our goal tomorrow is to try and eat somewhere other than the hospital.
Love to All-
Kim
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