I got a call from Dr. Pieper's office yesterday. She's agreed to see me! Woot woot! My appointment isn't until December 21st though, however, I'm on the cancellation list so if someone cancels, I may get in earlier. I'm not worried about waiting until December though. I just want to find out if this ovarian cyst is really just a cyst...
Off to Mexico in the morning! I will post about my vaca next week.
Hugs to all....
Tuesday, October 30, 2012
Monday, October 29, 2012
I'm heading to Mexico in two days! I'm going to a resort just outside of Cancun. I'm so excited to get away! I just need some major relaxation...
I called my nurse practitioners office last week to follow-up on my ovarian cyst and fibroid issues. She's no longer there... might explain why I never heard from her after my diagnosis. I really thought she would have called me and when she didn't, I honestly felt really bad. Since she's gone, the girl I spoke with said they would just refer me to an OB-GYN, which is what I'm sure Julie (NP) would have done anyway. They gave me the number for the OB-GYN Center at IMC (the hospital that I had surgery at and usually go to for mammograms, etc.) I called and the scheduler lady who answered was very, very nice. I told her what was going on and she suggested that I see Dr. Pieper. I'm still waiting to hear back from them on whether this Dr. will take me on as a patient. I guess she doesn't usually take new patients but with my "history" she might see me. I'm hoping to hear from them before I leave on Wednesday.
I saw that my Pancreastatin blood test was finally in but it doesn't show the results on-line. I did call the cancer center to get my results but have not heard back from them. This was last Monday! I guess I'll call again today. I just want to know if it went down or not It was 667 and the normal is <150.
I met my first real fellow Carcinoid survivor! I went to lunch last Friday with my long-time friend Marc, who also knows a man with Carcinoid. He met us for lunch. He is 67 now and retired. He was diagnosed 15 years ago and has had 3 heart surgeries. All that serotonin that these tumors can emit, damage the valves of the heart. He was diagnosed before Sandostatin was on the market so he had a lot of damage. He's been on Sando now for 8 years and is doing well. He's had radio frequency ablation to some tumors in his liver and he said he has a couple in him abdomen. His big concern for me was my Serotonin level and that I have a Cardiologist. The haven't checked my level since right after my surgery and it was very high, 1700+. Normal is below 450 I think... might be even less. I think I'll ask to have it checked when I go back in for my next round of blood tests.
So off to Mexico! I will try and post some pictures when I return.
I called my nurse practitioners office last week to follow-up on my ovarian cyst and fibroid issues. She's no longer there... might explain why I never heard from her after my diagnosis. I really thought she would have called me and when she didn't, I honestly felt really bad. Since she's gone, the girl I spoke with said they would just refer me to an OB-GYN, which is what I'm sure Julie (NP) would have done anyway. They gave me the number for the OB-GYN Center at IMC (the hospital that I had surgery at and usually go to for mammograms, etc.) I called and the scheduler lady who answered was very, very nice. I told her what was going on and she suggested that I see Dr. Pieper. I'm still waiting to hear back from them on whether this Dr. will take me on as a patient. I guess she doesn't usually take new patients but with my "history" she might see me. I'm hoping to hear from them before I leave on Wednesday.
I saw that my Pancreastatin blood test was finally in but it doesn't show the results on-line. I did call the cancer center to get my results but have not heard back from them. This was last Monday! I guess I'll call again today. I just want to know if it went down or not It was 667 and the normal is <150.
I met my first real fellow Carcinoid survivor! I went to lunch last Friday with my long-time friend Marc, who also knows a man with Carcinoid. He met us for lunch. He is 67 now and retired. He was diagnosed 15 years ago and has had 3 heart surgeries. All that serotonin that these tumors can emit, damage the valves of the heart. He was diagnosed before Sandostatin was on the market so he had a lot of damage. He's been on Sando now for 8 years and is doing well. He's had radio frequency ablation to some tumors in his liver and he said he has a couple in him abdomen. His big concern for me was my Serotonin level and that I have a Cardiologist. The haven't checked my level since right after my surgery and it was very high, 1700+. Normal is below 450 I think... might be even less. I think I'll ask to have it checked when I go back in for my next round of blood tests.
So off to Mexico! I will try and post some pictures when I return.
Saturday, October 20, 2012
Prayers for Sunny!
Today I read a blog from a fellow Carcinoid Cancer Survivor. She is a true warrior. Her name is Sunny and she has a blog and a book chronicling her fight to survive. She's asking for all our prayers at this time. Her cancer seems to be spreading quickly. I was very distressed when reading her new post. She has been through so much. I prayer for a miracle to help her continue her battle. My prayers go out to her, her boys and her husband.
There are several good "blogs" out there and I will try to add the links to them here on my blog.
Prayers to all.
There are several good "blogs" out there and I will try to add the links to them here on my blog.
Prayers to all.
Thursday, October 18, 2012
Surgery vs. Y-90 Sir Spheres
I need to update you on what Dr. B. the liver surgeon, told me! I met with him last month. He felt that the left lobe of my liver was enough to "support" me--keep my alive while my liver regenerates. I do have 3 tumors in the left lobe but he could do radio frequency ablation (RFA) on them. It is a small probe that uses heat to "cook" the tumor(s). Whew, sounds like a MAJOR surgery and I know it has risks... my biggest problem is that my insurance won't pay him, not even out-of-network.
I did have my blood work done and a CT Scan last week. Blood work is good. My liver function is still 100%. My Chromogranin A (CgA) went down from 249 to 111. CgA is a tumor marker and can go up with tumor growth. We also did a Pancreastatin blood test, which is an even better tumor marker for the liver but it hasn't come back yet.
Even though my CgA went down, my CT Scan showed a small increase in all the tumors in my liver. Not a lot, a few millimeters. I'm concerned that I had any growth at all since this is supposed to be a slow-growing cancer and its only been four months! I was a bit surprised and I am worried that this cancer is going to be more aggressive than thought.
I met with my oncologist this past Tuesday. I was pretty nervous since I had no idea how he would feel about me having gone to see Dr. Belnap! I shouldn't have been... he was very positive about it and seemed pleased that Dr. B thought I was a good candidate for surgery. He knows, however, that my insurance won't pay for him to do the surgery. He said we had a few options. He can send me for a consultation with another liver surgeon in-network and then if they don't want to operate, I can appeal my insurance's denial and I can fight them to get Dr. B approved to do it. There is a chance they may just want me to go to someone else, out-of-state, like Dr. Pommier in Portland who is a Carcinoid Specialist. I would love to go see him but don't really want to have surgery out-of-state. I know a lot of us "noids" have too though so I would do it if it came down to it. My other option, and the one I am leaning towards, is to do the sir-spheres first, then surgery later. Sir-spheres are radioactive beads that they insert directly into your liver tumors through an artery in your groin. It's sort of like angioplasty. They usually do it in three steps. First, they map you. They insert the wire and a dye which shows them how your liver is wired! Just to make sure they can get to the tumors and that you don't have any physiology that would prevent the procedure. The second step is actually inserting the radioacive beads to 1/2 of your liver. Then you wait--I'm not sure how long but it's weeks. Third, they go in and do the other half. I know of several fellow patients who have had this done. Some have tumor shrinkage and even tumor necrosis (death). It can also just stabilize them from growing.
The plan: I am going to wait until after my next scan to do anything. We decided to see what my tumors do over the next four months. I'm not 100% sure this is the best plan. Part of me wants to be more aggressive right now and the other part says, wait a little while longer and see if the Sandostatin stops the tumors from growing. Plus, if I wait, I'll be closer to July 1st when I can change my insurance to another carrier who would be more likely to allow Dr. B to operate (if that's what I want). There is, of course, no guarantee that a new insurance company will approve anything!
I do feel better knowing we have a "plan". My Oncologist seemed very positive and was impressed with how much I knew. We talked about specialists and clinical trials, PRRT, Ga-68 scan, other treatments, etc. He was like, "wow" you know so much! It is definitely true that you have to be your own "advocate" with this cancer. So many, many doctors don't know anything about Carcinoid. I think the word is spreading and we have to keep on getting it out there! I still feel very lucky that all my doctors have known about Carcinoid and how to treat it. From the Gastroenterologist who did my colonoscopy, my surgeon and my Oncologist, they all know a lot about it.
I will try to post more often. I always have a brain-cramp when I try to remember how to get to the right account! Stay well, be happy and live life to the fullest!
I did have my blood work done and a CT Scan last week. Blood work is good. My liver function is still 100%. My Chromogranin A (CgA) went down from 249 to 111. CgA is a tumor marker and can go up with tumor growth. We also did a Pancreastatin blood test, which is an even better tumor marker for the liver but it hasn't come back yet.
Even though my CgA went down, my CT Scan showed a small increase in all the tumors in my liver. Not a lot, a few millimeters. I'm concerned that I had any growth at all since this is supposed to be a slow-growing cancer and its only been four months! I was a bit surprised and I am worried that this cancer is going to be more aggressive than thought.
I met with my oncologist this past Tuesday. I was pretty nervous since I had no idea how he would feel about me having gone to see Dr. Belnap! I shouldn't have been... he was very positive about it and seemed pleased that Dr. B thought I was a good candidate for surgery. He knows, however, that my insurance won't pay for him to do the surgery. He said we had a few options. He can send me for a consultation with another liver surgeon in-network and then if they don't want to operate, I can appeal my insurance's denial and I can fight them to get Dr. B approved to do it. There is a chance they may just want me to go to someone else, out-of-state, like Dr. Pommier in Portland who is a Carcinoid Specialist. I would love to go see him but don't really want to have surgery out-of-state. I know a lot of us "noids" have too though so I would do it if it came down to it. My other option, and the one I am leaning towards, is to do the sir-spheres first, then surgery later. Sir-spheres are radioactive beads that they insert directly into your liver tumors through an artery in your groin. It's sort of like angioplasty. They usually do it in three steps. First, they map you. They insert the wire and a dye which shows them how your liver is wired! Just to make sure they can get to the tumors and that you don't have any physiology that would prevent the procedure. The second step is actually inserting the radioacive beads to 1/2 of your liver. Then you wait--I'm not sure how long but it's weeks. Third, they go in and do the other half. I know of several fellow patients who have had this done. Some have tumor shrinkage and even tumor necrosis (death). It can also just stabilize them from growing.
The plan: I am going to wait until after my next scan to do anything. We decided to see what my tumors do over the next four months. I'm not 100% sure this is the best plan. Part of me wants to be more aggressive right now and the other part says, wait a little while longer and see if the Sandostatin stops the tumors from growing. Plus, if I wait, I'll be closer to July 1st when I can change my insurance to another carrier who would be more likely to allow Dr. B to operate (if that's what I want). There is, of course, no guarantee that a new insurance company will approve anything!
I will try to post more often. I always have a brain-cramp when I try to remember how to get to the right account! Stay well, be happy and live life to the fullest!
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