Thank you all for praying me through my first round of IL-2 treatment. It was a wild ride but I survived! PET scans done recently were sort of vaguely "ok" but really didn't show a lot of information yet about how well IL-2 is or is not working. At least, it showed no growth of my various small tumors since January. So, that's a good thing, right?
Round 2 begins soon. If you would like more detailed prayer requests please contact me or my daughter Kristen, and we will add you to the email list for those updates. We are not posting exact treatment schedule on public blog / Facebook.
Thank you SO MUCH to all the friends and family who have been caring for us sacrificially, with meals and taxiing my children all over the county! We practically needed a spreadsheet to keep track of it all. THANK YOU, THANK YOU!
A very big thank you to my wonderful parents, who have faithfully prayed for me and helped our family in so many ways. They have given of their time and placed much of their regular lives on hold to keep things running smoothly when I am in the hospital, allowing Charles to be with me often to support and encourage me. This time around Charles needs to be at work more and so several friends are taking turns being with me in the hospital when he cannot be there. We are also so very thankful for the provision of the funds to keep our medical insurance - without which I would not be able to have this expensive, intense treatment.
I am blessed, and well cared for.
Thankfully,
Karen
May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit.
~Romans 15:13
Monday, May 12, 2014
Sunday, March 16, 2014
The Plan is in Motion!
I can't believe it's been over three weeks since my last update. Then again, a lot has happened.
We decided on IL-2 as the best treatment option for me at this time. I passed all the pretests (stress echo-cardiogram, pulmonary function study, EKG, lab work) and spent 5 days at Lehigh Valley Medical Center in early March, receiving my first round of IL-2. Let's call it Round 1A. I will still need Round 1B, 2A, 2B, and if by then scans show shrinkage of the metastases, I will continue through 3A and 3B. Each round is followed by rest periods of 2 to 6 weeks, and lab work and other testing at certain intervals to see that my heart, lungs, kidney etc. are holding up to the stress of the treatment.
IL-2 is known to be a grueling treatment, and it was rather intense, but not unbearable. As my family doc said this week, "you come from tough stock!". Charles was with me and was a wonderful support and encouragement as I weathered each side effect. I am thankful for a supportive husband, family and many friends. We have had meals and rides for the kids and dozens of cards and emails and messages of love and support. Thankful for God's leading to Dr Nair (the kindest, most gentle doctor on the planet!) and for the fantastic nurses at LVHN.
I'm also thankful for the hope of IL-2. It's a small hope - 7% chance of a complete cure. But, cure is CURE and I'm willing to give IL-2 a try for that reason. NO other treatment for late stage RCC has any chance of a cure. Another 13% have partial responses, shrinkage of the mets, to varying degrees and for varying lengths of time - months to years. There is some evidence that even in the other 80% who appear not to respond to IL-2 initially, there is still a long term effect of better response to future treatments and a general trend to grow mets more slowly. The treatment is really a boosting of my immune system to fight the cancer with my own T cells etc. Other immune therapies are on the horizon for FDA approval in the next 6-12 months, which could piggyback onto my IL-2 exposure and which have even better response rates in clinical trials than does IL-2.
So, I am hopeful. Most likely I will continue to live with cancer, but as my son Evan wisely says, "So, I little bit of cancer won't hurt you, right Mom?" Yep. That's right Evan!
I will complete the entire treatment regime sometime in August, if all goes as expected. We are not posting the exact treatment schedule on the blog since this is a public forum. Adult friends and family members will be staying at our house anytime I am in the hospital. If you would like to pray specifically on the weeks I am in the hospital, please email me or my daughter Kristen, to be added to the more specific prayer email list. Explain to Kristen how you know us, and she will add you to the list.
Thank you everyone, for your continued love and support. And more so, your prayers. God has carried me through this so far with much peace and trust in His will for my future. I have my moments of despair but they are rare. I know He has me in his hands and his plans for me are best.
Love
Karen
He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart. Psalm 91:4 (Thank you Linette!)
We decided on IL-2 as the best treatment option for me at this time. I passed all the pretests (stress echo-cardiogram, pulmonary function study, EKG, lab work) and spent 5 days at Lehigh Valley Medical Center in early March, receiving my first round of IL-2. Let's call it Round 1A. I will still need Round 1B, 2A, 2B, and if by then scans show shrinkage of the metastases, I will continue through 3A and 3B. Each round is followed by rest periods of 2 to 6 weeks, and lab work and other testing at certain intervals to see that my heart, lungs, kidney etc. are holding up to the stress of the treatment.
IL-2 is known to be a grueling treatment, and it was rather intense, but not unbearable. As my family doc said this week, "you come from tough stock!". Charles was with me and was a wonderful support and encouragement as I weathered each side effect. I am thankful for a supportive husband, family and many friends. We have had meals and rides for the kids and dozens of cards and emails and messages of love and support. Thankful for God's leading to Dr Nair (the kindest, most gentle doctor on the planet!) and for the fantastic nurses at LVHN.
I'm also thankful for the hope of IL-2. It's a small hope - 7% chance of a complete cure. But, cure is CURE and I'm willing to give IL-2 a try for that reason. NO other treatment for late stage RCC has any chance of a cure. Another 13% have partial responses, shrinkage of the mets, to varying degrees and for varying lengths of time - months to years. There is some evidence that even in the other 80% who appear not to respond to IL-2 initially, there is still a long term effect of better response to future treatments and a general trend to grow mets more slowly. The treatment is really a boosting of my immune system to fight the cancer with my own T cells etc. Other immune therapies are on the horizon for FDA approval in the next 6-12 months, which could piggyback onto my IL-2 exposure and which have even better response rates in clinical trials than does IL-2.
So, I am hopeful. Most likely I will continue to live with cancer, but as my son Evan wisely says, "So, I little bit of cancer won't hurt you, right Mom?" Yep. That's right Evan!
I will complete the entire treatment regime sometime in August, if all goes as expected. We are not posting the exact treatment schedule on the blog since this is a public forum. Adult friends and family members will be staying at our house anytime I am in the hospital. If you would like to pray specifically on the weeks I am in the hospital, please email me or my daughter Kristen, to be added to the more specific prayer email list. Explain to Kristen how you know us, and she will add you to the list.
Thank you everyone, for your continued love and support. And more so, your prayers. God has carried me through this so far with much peace and trust in His will for my future. I have my moments of despair but they are rare. I know He has me in his hands and his plans for me are best.
Love
Karen
He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart. Psalm 91:4 (Thank you Linette!)
Thursday, February 20, 2014
Getting closer...
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.
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.
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.
Wednesday, January 29, 2014
Update and Prayer Requests
A) Dr Haas, my oncologist, and the Penn Radiologists feel that the pancreatic tumor (which is 1.5 not 1.2 cm as I stated before) is probably a kidney cancer (RCC = Renal Cell Carcinoma, clear cell type) metastasis, rather than another type of benign or malignant pancreatic tumor. I guess this is better than having two kinds of cancer, but benign would have been even nicer. :-(
B) They also feel that the kidney and pancreatic tumors are too small and/or it is too risky or of no benefit to have them removed or biopsied, and feel that starting targeted therapy medication ("chemo") ASAP is my best option, as it would treat the kidney and pancreatic tumors as well as the lung spots, now that they are assuming that all are kidney cancer (RCC).
C) Dr Haas is consulting with the surgeon from my second surgery, Dr Uzzo, at a medical conference they are both attending this Thursday in San Francisco. Please pray that they are able to discuss my case sufficiently, and that both will give me wise counsel.
D) I'm investigating options for a second opinion. It's a complicated, time consuming learning process, and my head is spinning with information. Please pray for wisdom for me and clarity from any doctors that I consult. And, please pray that my insurance will cover a second opinion if I decide to pursue somewhere out of the Philadelphia area. Kidney Cancer specialty hospitals are few and far between, so I may have to go to Baltimore or NYC to find the reassurance I need about my treatment plan.
Below is a video by the RCC specialists at Sloan Kettering, which explains in some detail the relatively recent advances in treatment for metastatic RCC. I realize this is 20 minutes more information than most people need, but if you are so led to listen to some or all of it, you will have some idea of the decision process we are in right now. (There is a good summary from the 11:45-14:50 mark on the video. If you have about three minutes to watch that part you will have the general idea.)
Thank you so much for praying for us as we research, pray, and decide on my treatment. We cannot imagine walking this road alone.
Karen
Joshua 1:9 Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.
B) They also feel that the kidney and pancreatic tumors are too small and/or it is too risky or of no benefit to have them removed or biopsied, and feel that starting targeted therapy medication ("chemo") ASAP is my best option, as it would treat the kidney and pancreatic tumors as well as the lung spots, now that they are assuming that all are kidney cancer (RCC).
C) Dr Haas is consulting with the surgeon from my second surgery, Dr Uzzo, at a medical conference they are both attending this Thursday in San Francisco. Please pray that they are able to discuss my case sufficiently, and that both will give me wise counsel.
D) I'm investigating options for a second opinion. It's a complicated, time consuming learning process, and my head is spinning with information. Please pray for wisdom for me and clarity from any doctors that I consult. And, please pray that my insurance will cover a second opinion if I decide to pursue somewhere out of the Philadelphia area. Kidney Cancer specialty hospitals are few and far between, so I may have to go to Baltimore or NYC to find the reassurance I need about my treatment plan.
Below is a video by the RCC specialists at Sloan Kettering, which explains in some detail the relatively recent advances in treatment for metastatic RCC. I realize this is 20 minutes more information than most people need, but if you are so led to listen to some or all of it, you will have some idea of the decision process we are in right now. (There is a good summary from the 11:45-14:50 mark on the video. If you have about three minutes to watch that part you will have the general idea.)
Thank you so much for praying for us as we research, pray, and decide on my treatment. We cannot imagine walking this road alone.
Karen
Joshua 1:9 Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.
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