feralsurfer72, please accept my most sincere condolences
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Posts by placiddrifter19
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Hello everyone..
To be perfectly honest, my heart goes out to all of you for what you're enduring, yet I find myself truly awestruck by the sheer courage you all display...
It has taken me two full days to gather the strength to post here. My father was hospitalized the day before yesterday due to hypercalcemia. We had been monitoring his calcium levels ourselves—since he hadn't been prescribed any bisphosphonates, which is actually why he suffered that pelvic fracture—and over the last few days, his condition took a sudden, drastic turn for the worse. He stopped eating and drinking, became completely disoriented, and just a day before we headed to the hospital, he wouldn't even wake up. We called the local clinic, they came to check him, and then we ended up calling 911 twice. The first time, they turned us away. The second time, they finally arrived in the middle of the night and insisted on taking him to Mount Sinai, simply because that’s where our residency falls, rather than to Mayo Clinic, where my father has been receiving treatment for seven years. We tried desperately to explain to the paramedics that this was a complication of his existing illness and that we needed him at Mayo Clinic, but it was all in vain...
We didn't dare attempt to drive him ourselves...
Early this morning, the clinic finally issued the medical transport order for Mayo Clinic along with a referral for internal medicine. The woman at triage actually told us how lucky we were to have been so persistent about insisting on Mayo... Can you even believe it?...
Dad is currently in oncology. He is feeling slightly better today; he's on IV fluids and slowly starting to come back to himself..
Since his appointment for the new radiation mapping for his pelvis was already scheduled for Monday, they will handle that while he is here in the oncology ward...
On another note, I met with Dr. Miller on Monday. He was quite surprised by certain errors in the previous treatment protocols. He suggested we explore whether Gamma Knife surgery might be an option for the remaining 5mm metastasis, and as a primary therapy (given the lung involvement), he prescribed injections of medroxyprogesterone acetate (a hormone, Provera). He noted that this has shown promising results in similar cases... We are currently waiting for the injections to arrive from overseas since they aren't stocked locally here in the States.
The day before he was admitted, we had bloodwork done which showed a massive CRP level of 212, so we were all fearing pneumonia, but the doctors at Mayo insisted his lungs looked clear. He is currently being treated with Augmentin.
Wishing you all the best, stay strong!
To be perfectly honest, my heart goes out to all of you for what you're enduring, yet I find myself truly awestruck by the sheer courage you all display...
It has taken me two full days to gather the strength to post here. My father was hospitalized the day before yesterday due to hypercalcemia. We had been monitoring his calcium levels ourselves—since he hadn't been prescribed any bisphosphonates, which is actually why he suffered that pelvic fracture—and over the last few days, his condition took a sudden, drastic turn for the worse. He stopped eating and drinking, became completely disoriented, and just a day before we headed to the hospital, he wouldn't even wake up. We called the local clinic, they came to check him, and then we ended up calling 911 twice. The first time, they turned us away. The second time, they finally arrived in the middle of the night and insisted on taking him to Mount Sinai, simply because that’s where our residency falls, rather than to Mayo Clinic, where my father has been receiving treatment for seven years. We tried desperately to explain to the paramedics that this was a complication of his existing illness and that we needed him at Mayo Clinic, but it was all in vain...
We didn't dare attempt to drive him ourselves...
Early this morning, the clinic finally issued the medical transport order for Mayo Clinic along with a referral for internal medicine. The woman at triage actually told us how lucky we were to have been so persistent about insisting on Mayo... Can you even believe it?...
Dad is currently in oncology. He is feeling slightly better today; he's on IV fluids and slowly starting to come back to himself..
Since his appointment for the new radiation mapping for his pelvis was already scheduled for Monday, they will handle that while he is here in the oncology ward...
On another note, I met with Dr. Miller on Monday. He was quite surprised by certain errors in the previous treatment protocols. He suggested we explore whether Gamma Knife surgery might be an option for the remaining 5mm metastasis, and as a primary therapy (given the lung involvement), he prescribed injections of medroxyprogesterone acetate (a hormone, Provera). He noted that this has shown promising results in similar cases... We are currently waiting for the injections to arrive from overseas since they aren't stocked locally here in the States.
The day before he was admitted, we had bloodwork done which showed a massive CRP level of 212, so we were all fearing pneumonia, but the doctors at Mayo insisted his lungs looked clear. He is currently being treated with Augmentin.
Wishing you all the best, stay strong!
Kate Wells44 said:The newer drugs on the high-cost medication list include pazopanib (Votrient) and everolimus (Afinitor). Pazopanib is indicated for first-line treatment of metastatic renal cell carcinoma—essentially serving the same purpose as Sutent—while everolimus is typically used after a patient has finished Sutent, provided they don't have brain metastases. Consequently, at this specific moment, the patient does not qualify for either of these medications under Medicare coverage.
By the way, I am an oncologist.
Thank you so much for providing that clarification. Is it not utterly disheartening that despite the vast array of brilliant, cutting-edge drugs registered to combat kidney cancer, my father is unable to access even a single one? 😢
Thank you.
That is essentially my intended course of action. It appears that Sutent and Nexavar contribute to the destruction of blood vessels within the tumor, which can trigger bleeding. However, if I have correctly interpreted the information regarding these two newer medications, they actually function by blocking the specific protein necessary for tumor angiogenesis—the formation of those blood vessels. It seems to me that their mechanism of action is quite different from the former.
Thank you
Thank you
@ John Foster38 and Angela Wright
I want to express my deepest gratitude for all the advice provided. We have scheduled a consultation with Dr. Miller for this coming Monday, and we are waiting with bated breath to hear their professional opinion.
I find myself compelled to ask one further question. Given that Afinitor and Votrient were added to the Medicare coverage list just last month for the treatment of advanced kidney carcinoma—and assuming that perhaps no one in the States has even utilized them yet—do you happen to know if they are permitted for use in cases involving brain metastasis? I ask because I understand that Sutent and Nexevar are strictly contraindicated in such instances. Furthermore, our oncologist, whom we visited at the beginning of the week, ruled out Sutent, Nexevar, and Avstin as chemotherapy options, yet these two specific drugs were not even mentioned... which has left me wondering...
Thank you so very much
I want to express my deepest gratitude for all the advice provided. We have scheduled a consultation with Dr. Miller for this coming Monday, and we are waiting with bated breath to hear their professional opinion.
I find myself compelled to ask one further question. Given that Afinitor and Votrient were added to the Medicare coverage list just last month for the treatment of advanced kidney carcinoma—and assuming that perhaps no one in the States has even utilized them yet—do you happen to know if they are permitted for use in cases involving brain metastasis? I ask because I understand that Sutent and Nexevar are strictly contraindicated in such instances. Furthermore, our oncologist, whom we visited at the beginning of the week, ruled out Sutent, Nexevar, and Avstin as chemotherapy options, yet these two specific drugs were not even mentioned... which has left me wondering...
Thank you so very much
Thank you so much
We are fully aware of the situation and the current circumstances, but honestly, finding the strength to surrender is proving quite difficult. We intend to seek a second opinion from Dr. Miller...
We are fully aware of the situation and the current circumstances, but honestly, finding the strength to surrender is proving quite difficult. We intend to seek a second opinion from Dr. Miller...
Thank you so much for the advice.
I had been holding onto a glimmer of hope that perhaps Avastin might still be an option for him. However, the radiation oncologist informs me that radiotherapy isn't feasible because the metastases are too widely dispersed throughout the lungs. At this stage, my only remaining question is whether a Gamma Knife procedure could be performed in the near future to make chemotherapy a possibility. As for seeking treatment abroad, I honestly haven't had the chance to properly research those avenues yet. Part of me was desperately hoping we wouldn't have to go down that road, and truthfully, I'm at a complete loss as to even where I would begin looking.
I wonder, is there any precedent here in the States for accessing chemotherapy under one's own responsibility and expense, and would any local oncologist actually agree to prescribe it? To be perfectly honest, I knew nothing about "off-label" medications, let alone which specific ones might apply in a case like this....
Thank you,
Best regards,
I had been holding onto a glimmer of hope that perhaps Avastin might still be an option for him. However, the radiation oncologist informs me that radiotherapy isn't feasible because the metastases are too widely dispersed throughout the lungs. At this stage, my only remaining question is whether a Gamma Knife procedure could be performed in the near future to make chemotherapy a possibility. As for seeking treatment abroad, I honestly haven't had the chance to properly research those avenues yet. Part of me was desperately hoping we wouldn't have to go down that road, and truthfully, I'm at a complete loss as to even where I would begin looking.
I wonder, is there any precedent here in the States for accessing chemotherapy under one's own responsibility and expense, and would any local oncologist actually agree to prescribe it? To be perfectly honest, I knew nothing about "off-label" medications, let alone which specific ones might apply in a case like this....
Thank you,
Best regards,
Good day, everyone.
While I have been a regular reader of this forum for quite some time, circumstances have finally compelled me to join the conversation and reach out to you all for assistance, advice, and guidance...
My father (born in 1944) was diagnosed with renal cell carcinoma in early 2006. At the time, the tumor was about 4 cm, and the prognosis looked promising. He underwent surgery to remove the kidney, but no further therapy was administered. Two years later, the adrenal gland was affected and had to be removed—again, without additional treatment. Then, a year after that, five metastases appeared in his lungs, measuring up to 12mm. For two years, he was treated with Sutent, which successfully caused those metastases to recede. However, due to the side effects of that therapy, he suffered a stroke about a year and a half ago. We had to discontinue the Sutent. While his recovery from the stroke was quite good, his condition took a turn for the worse six months ago. Recent scans revealed metastases on both the left and right sides of the pelvic bone (measuring 4 cm and 8 cm respectively), a 3 cm metastasis in the brain, and approximately ten more in the lungs, reaching up to 2 cm. His head has since undergone surgery and radiation. Additionally, he has received two cycles of radiation on the right side of the pelvis and one cycle on the left. The lung metastases have not been treated yet. Since the brain surgery, we have had two brain MRIs—one before and one after radiation—which show the brain metastasis has stabilized at a diameter of 5 mm.
Throughout all these years, my father has been receiving treatment at Mayo Clinic. What has absolutely shocked me lately, however, is the inertia and, frankly, the poor approach regarding his ongoing care from his oncologist. Because of the brain involvement, the doctor insists that no chemotherapy can be administered. He suggested that the left side of the pelvis (where there is a visible fracture) could undergo another round of radiation, and that would be the end of it. As for the lungs, he isn't planning any treatment at all. When I heard this, I was left in total shock!
The neurosurgeon did mention that once the "effect" of the cranial radiation wears off—likely in about two months—it might be possible to perform Gamma Knife surgery, following any oncological treatments.
When I asked the oncologist if performing Gamma Knife would be a wise move to eliminate the brain metastasis so that he could then begin systemic chemotherapy with a targeted drug, he simply replied, "Well, you decide for yourselves"??!!
Currently, because of the metastases and the pelvic fracture, my father’s mobility is limited, and he relies on crutches to get around. We are managing his pain with medication. His blood work only indicates anemia.
I am at a loss as to what to do. Should I insist on the Gamma Knife sooner? Should I seek a second opinion? I am pleading for your help and advice—is any form of chemotherapy even possible in his current state, and is radiation for the lungs an option?
Please forgive the length of this post.
Thank you in advance.
Kenneth Wilson6
While I have been a regular reader of this forum for quite some time, circumstances have finally compelled me to join the conversation and reach out to you all for assistance, advice, and guidance...
My father (born in 1944) was diagnosed with renal cell carcinoma in early 2006. At the time, the tumor was about 4 cm, and the prognosis looked promising. He underwent surgery to remove the kidney, but no further therapy was administered. Two years later, the adrenal gland was affected and had to be removed—again, without additional treatment. Then, a year after that, five metastases appeared in his lungs, measuring up to 12mm. For two years, he was treated with Sutent, which successfully caused those metastases to recede. However, due to the side effects of that therapy, he suffered a stroke about a year and a half ago. We had to discontinue the Sutent. While his recovery from the stroke was quite good, his condition took a turn for the worse six months ago. Recent scans revealed metastases on both the left and right sides of the pelvic bone (measuring 4 cm and 8 cm respectively), a 3 cm metastasis in the brain, and approximately ten more in the lungs, reaching up to 2 cm. His head has since undergone surgery and radiation. Additionally, he has received two cycles of radiation on the right side of the pelvis and one cycle on the left. The lung metastases have not been treated yet. Since the brain surgery, we have had two brain MRIs—one before and one after radiation—which show the brain metastasis has stabilized at a diameter of 5 mm.
Throughout all these years, my father has been receiving treatment at Mayo Clinic. What has absolutely shocked me lately, however, is the inertia and, frankly, the poor approach regarding his ongoing care from his oncologist. Because of the brain involvement, the doctor insists that no chemotherapy can be administered. He suggested that the left side of the pelvis (where there is a visible fracture) could undergo another round of radiation, and that would be the end of it. As for the lungs, he isn't planning any treatment at all. When I heard this, I was left in total shock!
The neurosurgeon did mention that once the "effect" of the cranial radiation wears off—likely in about two months—it might be possible to perform Gamma Knife surgery, following any oncological treatments.
When I asked the oncologist if performing Gamma Knife would be a wise move to eliminate the brain metastasis so that he could then begin systemic chemotherapy with a targeted drug, he simply replied, "Well, you decide for yourselves"??!!
Currently, because of the metastases and the pelvic fracture, my father’s mobility is limited, and he relies on crutches to get around. We are managing his pain with medication. His blood work only indicates anemia.
I am at a loss as to what to do. Should I insist on the Gamma Knife sooner? Should I seek a second opinion? I am pleading for your help and advice—is any form of chemotherapy even possible in his current state, and is radiation for the lungs an option?
Please forgive the length of this post.
Thank you in advance.
Kenneth Wilson6