We had a VERY long appointment with Dr Nair in Allentown (He literally spent at least 2 hours with us) to learn all about the IL-2 treatment program he runs at Lehigh Valley Medical Center. He was extremely knowledgable, a great communicator, and so KIND (as were all his office staff). He has about 20 years experience with IL-2, nine of those years running the IL-2 program at LVMC, fine-tuning the procedures they follow to obtain the best results they can but with great concern for their patients' safety.
Dr Nair was pleased that our scheduling "happened" to coincide with not one but TWO former IL-2 patients being there today for follow-up appts. Both patients and their wives happily met with us and spent 10-20 minutes each, telling us all about their experiences in treatment and following. Then, Dr Nair personally walked us to the inpatient IL-2 floor, and introduced me to one of the IL-2 specialist nurses, as well as to a gentleman who had just had his first week of IL-2 treatment, ending the night before. So we were able to talk with this patient about how he felt, just 12 hours after being "through the wringer". All of these meetings were very helpful, and we feel, were ordained by God.
I have multiple tests to schedule for next week, in order to be sure my heart and lungs are strong enough for the treatment. An MRI of the brain is also required, to be sure I have no metastasis to my brain. If I do not pass the tests, there are still other treatment options, including PD-1 which is showing very promising results in clinical trials and should be released by the FDA within the next year. Right now, we ask that you pray that I will qualify for IL-2.
If all goes as planned, I will begin treatment in early March and will have up to 6 hospital stays in the next 5 months. Dr Nair's program uses a telemetry floor, rather than ICU, and rarely has to admit his patients to ICU. We are grateful for that. It is a grueling and unpleasant treatment, to say the least. We feel it is worth the short term pain for the chance of long term benefit. IL-2 cures Renal Cell Carcinoma (RCC) in about 7% of patients, slows RCC significantly in another 13-15%, and seems to show benefit in the effectiveness of other future treatments in many of the remaining 80%.
Those of you who live locally and know our children and would be willing to help with rides for them while I am in treatment, please email Yvonne Miller (ymiller22 @ gmail.com), who has offered to organize a schedule and keep track of the sign-ups for me. It might be a week or so before we really know exactly what will be needed, though. I will not be posting the specific treatment schedule or the children's activity schedule on this blog or on Facebook, since the blog is a public forum.
Thank you so much for praying for all of us. I cannot imagine going through this without the Lord leading the way and comforting me with His presence, and without having the support of so many loving friends and family.
Karen
Deuteronomy 31:8 (ESV)
It is the Lord who goes before you. He will be with you; He will not leave you or forsake you. Do not fear or be dismayed.
Thursday, February 20, 2014
Tuesday, February 11, 2014
Waiting
Thursday will be three weeks since I got "the news". We are still waiting for a definite treatment plan. I thought I would have started on either Sutent or Votrient last week, but both Dr Haas and I agree that we need more time and more information to decide for sure.
At the end of last week we sent several sets of MRI and CT scan reports and discs to Dr Uzzo, my 2012 surgeon, and are waiting for his recommendations. We expect he will not recommend surgery.
A new type of treatment for RCC, called "PD1" will be FDA approved in about a year, but I do not qualify for the clinical trials currently available.
I am also waiting for an appt at Lehigh Valley Hospital in Allentown to discuss a treatment they specialize in, called IL-2. It is intense and, honestly, pretty scary. Nicknamed "shake and bake," it involves admission to ICU for a week, with infusions every 8 hours for several days, until your body cannot take anymore doses. Side effects include high fevers, low platelets etc. Once you recover for a few days in ICU they send you home to rest for a week, and then you come back and they do it all over AGAIN. Scans a few weeks later and if there is tumor shrinkage, they might even invite you back for another set! FUN, FUN, FUN.
IL-2 has been around for at least 15-20 years so the results are well tested and documented, but it only offers a 5% chance of complete and long term remission. Not great odds, but I have a lot of lifetime left if I can be cured, and so I am seriously considering it. If it does not give me a complete remission it does sometimes at least provide a short term remission of a few years. Then, I could try the other meds, PD1, or new treatments not yet available. IL-2 also has been shown to improve the effectiveness of other treatments that follow it. Maybe. There are still some questions to be answered about my particular case before I even know if I will be accepted as a candidate for IL-2. Please pray I can get those answers THIS WEEK.
So, I am facing some very difficult decisions. God has given me peace during this time of waiting, which is pretty miraculous if you know me! I have my moments of fear but I also have enough hope to be able to think clearly and research my options, in order to make as wise a decision as I can.
Meanwhile we are trying to get the house and business as organized as we can, putting meals in the freezer, and trying to be as prepared as possible for the next steps, whatever they are. And I am spending a lot of time researching all I can about my options.
Thank you for the many cards and emails and posts, the offers of help, the hugs, the "we care about you" conversations, and some truly amazing generosity and love toward our family. God is reassuring us that HE is with us, and He knows exactly what He is doing, even when we have no idea what the future holds. Trying to "trust an unknown future to a known God."
Love
Karen
Proverbs 3: 5-6
Trust in the Lord with all your heart,
and do not lean on your own understanding.
In all your ways acknowledge Him,
and He will direct your paths.
At the end of last week we sent several sets of MRI and CT scan reports and discs to Dr Uzzo, my 2012 surgeon, and are waiting for his recommendations. We expect he will not recommend surgery.
A new type of treatment for RCC, called "PD1" will be FDA approved in about a year, but I do not qualify for the clinical trials currently available.
I am also waiting for an appt at Lehigh Valley Hospital in Allentown to discuss a treatment they specialize in, called IL-2. It is intense and, honestly, pretty scary. Nicknamed "shake and bake," it involves admission to ICU for a week, with infusions every 8 hours for several days, until your body cannot take anymore doses. Side effects include high fevers, low platelets etc. Once you recover for a few days in ICU they send you home to rest for a week, and then you come back and they do it all over AGAIN. Scans a few weeks later and if there is tumor shrinkage, they might even invite you back for another set! FUN, FUN, FUN.
IL-2 has been around for at least 15-20 years so the results are well tested and documented, but it only offers a 5% chance of complete and long term remission. Not great odds, but I have a lot of lifetime left if I can be cured, and so I am seriously considering it. If it does not give me a complete remission it does sometimes at least provide a short term remission of a few years. Then, I could try the other meds, PD1, or new treatments not yet available. IL-2 also has been shown to improve the effectiveness of other treatments that follow it. Maybe. There are still some questions to be answered about my particular case before I even know if I will be accepted as a candidate for IL-2. Please pray I can get those answers THIS WEEK.
So, I am facing some very difficult decisions. God has given me peace during this time of waiting, which is pretty miraculous if you know me! I have my moments of fear but I also have enough hope to be able to think clearly and research my options, in order to make as wise a decision as I can.
Meanwhile we are trying to get the house and business as organized as we can, putting meals in the freezer, and trying to be as prepared as possible for the next steps, whatever they are. And I am spending a lot of time researching all I can about my options.
Thank you for the many cards and emails and posts, the offers of help, the hugs, the "we care about you" conversations, and some truly amazing generosity and love toward our family. God is reassuring us that HE is with us, and He knows exactly what He is doing, even when we have no idea what the future holds. Trying to "trust an unknown future to a known God."
Love
Karen
Proverbs 3: 5-6
Trust in the Lord with all your heart,
and do not lean on your own understanding.
In all your ways acknowledge Him,
and He will direct your paths.
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