Leland's second Provenge treatment began on April 7 with the aphoresis procedure in Vancouver. Again, Mark and Tina were able to come and entertain us for much of the three hours Leland was in the chair. As before, Del and Chuck drove us there and back.
On Thursday the 10th, the four of us left again for Seattle Treatment and Wellness Center and the 2nd infusion. Afterward, we met Chaunda, and went to dinner together, then took the Bainbridge Ferry across the Sound to stay at Raspberry Cottage until Monday. We had a great time, seeing part of the Skagit Valley Tulip Festival on Friday, attending church in Paulsbo on Sabbath, and exploring Bainbridge Island on Sunday. On Monday we cleaned the house, and left for home. We got only as far as Bremmerton before it became very obvious Del and Chuck's car was not going to make it any further without a major transmission repair. We got a tow, they gave us a loaner car, and we returned to the Cottage until Thursday morning.
Not wanting to waste any vacation time, even though it was forced on us, on Tuesday, we again took a ferry to Seattle, this time as foot traffic. The streets going uptown from the ferry are extremely steep, but Leland had the idea of riding the escalators in the buildings on the corners to the next level, so we did that for 3 of the blocks then walked about 10 more blocks, caught the monorail and spent the rest of the day at the Seattle Center, where among other things we saw a 3-D movie about Madagascar and Lemurs. Very interesting and fun. And we love the ferry rides.
On Wednesday, it was back to Seattle on the Ferry again, this time for Leland to return to the SCTWC and have his central venous cathether flushed and the bandage changed. Then the ferry took us to Bremmerton and we picked up the car, now running very well, went back to the Cottage for the evening and then home on Thursday with a stop in Portland for a doctor's appointment for Chuck. We had Friday at home,then Sabbath after church we drove to Portland to spend Easter with our families. Cherilyn and Todd put up the 4 of us very graciously, and hosted a family dinner for both extended families, with a fun easter egg hunt and egg toss. It was great to see the cousins and babies together and get caught up with the news, as well as meet Ken's new and lovely girl friend, Bryn.
On Monday, we headed to Vancouver for the 3rd and last aphoresis procedure. Home again for Tue and Wed, then Thurs back to Seattle for the last infusion, then a drive to Portland to spend the night and be at Portland Adventist Hospital by 9am to have the central venous catheter removed. Leland is happy to be rid of the nuisance of having to cover it with plastic wrap for a shower, and taping it to his chest so it would not flop around when he moved.
Del and Chuck have been so wonderful to us during this time, giving so much of themselves to drive us to our appointments, always making us think they are happy to spend the time with us. I don't know what we would have done without them and their loving caring ways. We are truly blesssed with family and loved ones who are helping us through this time.
We will have another Circulating Tumor Cell Test done on the 9th of May, and get the results on the 15th when we go to the next appointment. Leland has not been feeling very well, very low energy and a lot of nausea. We hope that the medication he just discontinued was the cause and he will feel better soon.
Sunday, April 27, 2014
Monday, March 31, 2014
2014, March 31 First Provenge Treatment Done
A week ago to day, March 24th, we went to Vancouver for the first part of Leland's first Provenge treatment. We caught a ride with the Mt Adams Senior Transportation, had a very nice and friendly driver who came to our door and delivered us to the Red Cross Center in Vancouver. It is the only one between California and Seattle which does the aphoresis treatment. Within moments our nurse had him attached to a very sophisticated machine with a lot of tubing; she told us that during the 3 hours he would be hooked up, his entire blood supply would be run through the machine twice. We could see the the progress being made as the white cells and plasma were withdrawn into a gas permeable bag. The nurse told us the cells would be able to give off carbon dioxide and take in oxygen as well as be nourished by the plasma en route.
He handled the treatment well, and we returned home later that day; our driver had waited for us.
On Thursday, the 27th, we went to Seattle in the morning, this time with Del and Chuck to do the driving. Leland's re-infusion was scheduled for 12:45 pm. He had to have pre-meds infused first, then the main infusion of his newly activated immune cells, all of which took about 3 hours. Then we went to a division of Quest Laboratory in the same building and he had his blood drawn for Circulating Tumor Cell Test as benchmark. They will order another one a short time after the Provenge is completed; it should assist the dr. in the determination of how well this worked and what the next step in his treatment will need to be. We ent to dinner at the Spaghetti Factory, and stayed overnight in our hotel, rather than make the round trip in one day.
My shoulder is slowly progressing, and I am able to do a little more with my right hand, such as dress myself and again, and cook. I am still unable to drive, and still in PT which is still quite painful at times. I was certainly not prepared for the all the ramifications of this surgery, but am so grateful it is done, and healing even though it is very slow, and still quite uncomfortable a good deal of the time. I am able to key board with both hands again, although it is a strain-makes my right hand and entire arm ache.
We went to Portland on Sabbath the 28th for Phoenix's first birthday. What a wonderful time we had with all our family except Grant there, as well as many of Cher and Todd's friends and their little ones. Cherilyn had made a beautiful cake with fondant frosting and jungle animals on it. Phoenix took it all in stride, and seemed to enjoy every moment. We got to see him take some toddling steps on his own, and spend some great play time with him. He is a darling little man, and we are very much in love with him. Cherilyn and Todd are such good parents, it does our hearts good to see them all together.
He handled the treatment well, and we returned home later that day; our driver had waited for us.
On Thursday, the 27th, we went to Seattle in the morning, this time with Del and Chuck to do the driving. Leland's re-infusion was scheduled for 12:45 pm. He had to have pre-meds infused first, then the main infusion of his newly activated immune cells, all of which took about 3 hours. Then we went to a division of Quest Laboratory in the same building and he had his blood drawn for Circulating Tumor Cell Test as benchmark. They will order another one a short time after the Provenge is completed; it should assist the dr. in the determination of how well this worked and what the next step in his treatment will need to be. We ent to dinner at the Spaghetti Factory, and stayed overnight in our hotel, rather than make the round trip in one day.
My shoulder is slowly progressing, and I am able to do a little more with my right hand, such as dress myself and again, and cook. I am still unable to drive, and still in PT which is still quite painful at times. I was certainly not prepared for the all the ramifications of this surgery, but am so grateful it is done, and healing even though it is very slow, and still quite uncomfortable a good deal of the time. I am able to key board with both hands again, although it is a strain-makes my right hand and entire arm ache.
We went to Portland on Sabbath the 28th for Phoenix's first birthday. What a wonderful time we had with all our family except Grant there, as well as many of Cher and Todd's friends and their little ones. Cherilyn had made a beautiful cake with fondant frosting and jungle animals on it. Phoenix took it all in stride, and seemed to enjoy every moment. We got to see him take some toddling steps on his own, and spend some great play time with him. He is a darling little man, and we are very much in love with him. Cherilyn and Todd are such good parents, it does our hearts good to see them all together.
Saturday, March 8, 2014
2014 MARCH 8
Another month has flown by. We returned from Seattle on Wednesday this week and we are facing another bend in the road. Leland's PSA jumped to 11 which indicates positively the Xtandi is not working. Dr. Chen says to discontinue and has ordered him to begin a new treatment called Provenge; which is an immune system assault on the cancer. It will consist of three treatments two weeks apart over six weeks. His blood will be withdrawn after a catheter has been placed, his immune cells will be separated out and the rest of his blood will be returned to the other arm. The removed dendritic immune cells will be sent to a specialty lab in California, exposed to prostate antigens, sent back to the Seattle clinic and infused back into his blood stream three days later. This hopefully will encourage his immune system to fight the cancer and give him more quality time.
Since I am still unable to drive and Leland is unable to stay awake long enough to make the trip, Del and Chuck came with us to Seattle to help drive. We stopped in Kelso to see Karly and Tristin. Karly looks good and Tristin is adorable. Our visit had to be short because it was a long day. Upon reaching Seattle we met Chaunda and got a tour of her warehouse apartment, an interesting experience!
We had a great dinner at an Indian Restaurant; went to our hotel and turned in. Wednesday while Leland and I were at the clinic Del and Chuck took the car, went to the mall, did a lot of walking,a little shopping, and a lot of waiting. Leland was not feeling very well--head cold, sore throat and Dr. Chen ordered a vitamin infusion which took another hour and one half in addition to the regular two and one half hours we usually spend.
The trip home was long but thankfully the roads were bare.
Since I am still in my sling and still experiencing a fair amount of discomfort Del kindly offered to type this for me. So this is a joint effort. My surgery went very well--at least according to the doctor. I feel like I've been ruined! Seriously though, I am slowly progressing with the help of my excellent physical therapist. Leland has been a wonderful nurse and literally my right hand man.
We remain, as always, very thankful for the many blessings we enjoy.
We really appreciate Del and Chuck's help.
Since I am still unable to drive and Leland is unable to stay awake long enough to make the trip, Del and Chuck came with us to Seattle to help drive. We stopped in Kelso to see Karly and Tristin. Karly looks good and Tristin is adorable. Our visit had to be short because it was a long day. Upon reaching Seattle we met Chaunda and got a tour of her warehouse apartment, an interesting experience!
We had a great dinner at an Indian Restaurant; went to our hotel and turned in. Wednesday while Leland and I were at the clinic Del and Chuck took the car, went to the mall, did a lot of walking,a little shopping, and a lot of waiting. Leland was not feeling very well--head cold, sore throat and Dr. Chen ordered a vitamin infusion which took another hour and one half in addition to the regular two and one half hours we usually spend.
The trip home was long but thankfully the roads were bare.
Since I am still in my sling and still experiencing a fair amount of discomfort Del kindly offered to type this for me. So this is a joint effort. My surgery went very well--at least according to the doctor. I feel like I've been ruined! Seriously though, I am slowly progressing with the help of my excellent physical therapist. Leland has been a wonderful nurse and literally my right hand man.
We remain, as always, very thankful for the many blessings we enjoy.
We really appreciate Del and Chuck's help.
Wednesday, February 5, 2014
2014 February 5 More Adjustments
We returned home from Seattle an hour and a half ago to the most unwelcome sound of the fire alarms going off yet again. We had the same situation on Monday night when we returned home form Portland. We had attended Kevin and Luci's lovely wedding, then spent Monday caring for Phoenix, as he was sick with Pneumonia; had been running a fever even while on antibiotics, and could not go to his daycare. Both Cher and Todd had important business to do; we were free and delighted to spend more time with him even tho he was not feeling well. At least he could stay home in his own environment.
We could hear the fire alarms going off as we got out of the car in the garage, as I said, a most unwelcome sound! Leland got them turned off; we proceeded to unload, unpack and repack for the trip to Seattle the following day. I was right underneath one when it went off again with an earsplitting screech, which startled me rather violently. I involuntarily clapped my hands to my ears. In doing so, I further tore the already torn muscles in my right rotator cuff, making my right arm almost useless, and making it impossible for me to drive.
Chuck was willing to come along with us and help with the driving, as Leland is getting increasingly fatigued and unable to stay awake long enough to make a long drive without help. It was not easy for Del and Chuck, because she came home from the wedding sick, but felt she could manage without him for one night. Thank you both so much; we could not have done it alone!
The news at the clinic today was not what we wanted to hear, Leland's PSA went up by almost 50%, and several other elements of his blood tests were outside the normal range. Dr. Chen put him back on Lupron, ordered a shot for his low white count and an infusion for his bone strengthening medication. That took an extra hour and a half or so because we were one day too early for Medicare to pay for the regular shot. We had moved his appointment up one day to accomodate my surgery scheduled for tomorrow, not realizing the implications.
Dr. Chen wants Leland to stay on the Xtandi for one more month, and if his PSA continues this rapid rise, is suggesting Provenge would be appropriate for him. It is a new therapy which is an immune therapy-blood is withdrawn and treated with some substance which I can't remember, then returned to the patient, which then encourages the immune system to attack the cancer. There are 3 shots, each two weeks apart, and the cost is 100,000 dollars! Medicare does pay for this, so our insurance will pay also. We are hoping our grant from the PAN foundation will pay the enormous co-payment.
We are grateful for every good day, grateful for insurance which pays these high medical bills and the foundations which help with the high co-payments. We are taking one day at a time, trusting that God will continue to lead us in the decisions we need to make.
We could hear the fire alarms going off as we got out of the car in the garage, as I said, a most unwelcome sound! Leland got them turned off; we proceeded to unload, unpack and repack for the trip to Seattle the following day. I was right underneath one when it went off again with an earsplitting screech, which startled me rather violently. I involuntarily clapped my hands to my ears. In doing so, I further tore the already torn muscles in my right rotator cuff, making my right arm almost useless, and making it impossible for me to drive.
Chuck was willing to come along with us and help with the driving, as Leland is getting increasingly fatigued and unable to stay awake long enough to make a long drive without help. It was not easy for Del and Chuck, because she came home from the wedding sick, but felt she could manage without him for one night. Thank you both so much; we could not have done it alone!
The news at the clinic today was not what we wanted to hear, Leland's PSA went up by almost 50%, and several other elements of his blood tests were outside the normal range. Dr. Chen put him back on Lupron, ordered a shot for his low white count and an infusion for his bone strengthening medication. That took an extra hour and a half or so because we were one day too early for Medicare to pay for the regular shot. We had moved his appointment up one day to accomodate my surgery scheduled for tomorrow, not realizing the implications.
Dr. Chen wants Leland to stay on the Xtandi for one more month, and if his PSA continues this rapid rise, is suggesting Provenge would be appropriate for him. It is a new therapy which is an immune therapy-blood is withdrawn and treated with some substance which I can't remember, then returned to the patient, which then encourages the immune system to attack the cancer. There are 3 shots, each two weeks apart, and the cost is 100,000 dollars! Medicare does pay for this, so our insurance will pay also. We are hoping our grant from the PAN foundation will pay the enormous co-payment.
We are grateful for every good day, grateful for insurance which pays these high medical bills and the foundations which help with the high co-payments. We are taking one day at a time, trusting that God will continue to lead us in the decisions we need to make.
Monday, January 20, 2014
2014 January 20 Through the Snow
Leland's last appointment was January 9. We traveled through quite a snowstorm on Snoqualmie Pass. We were very glad to drop out of the snow zone and into the rain on the other side. We met Chaunda for supper, and spent the evening with her, which we always enjoy. It was good to relax after so many hours in the car.
Leland's PSA has continued the slow rise, but Dr. Chen says he was not on the X-tandi long enough to see a difference when his blood was drawn, only about 10 days. Otherwise, his labs looked good, and treatment stays the same for now. Next month will give us a better picture of the PSA trend, so we will have to wait on that to draw any conclusions as to the effectiveness of this new treatment.
After we finished at the clinic on Thursday, we drove to Portland-in more rain-and spent the weekend with Cherilyn, Todd, Phoenix and Cierra, my great niece who is staying with Cherilyn and Todd this year. We had a wonderful time as always, and got to see Phoenix climb the stairs-so cute! His parents allow him to climb as long as someone is right there to watch him, and catch him if he falls. Otherwise, there is a gate which is kept closed so he can't crawl over there when no one is watching.
Leland is a little low on energy, and has trouble staying awake if he is not actively doing something, so he spends a fair amount of time with his computer and a train layout that lets him be very creative while keeping him awake. He also makes little videos of the pictures we take of Phoenix, and we all enjoy those.
We stay busy with our various appointments and seeing friends and family. Today my doctor who did the endoscopy told me the biopsies were negative for Helicobacter and one other thing which I can't remember. So I will not need to take antibiotics for the ulcers, for which I am grateful. I will need another biopsy on the esphogeal ulcers in April to check healing or lack thereof. I am doing all I can to handle my stress more healthfully, meds, exercise, counseling, and avoidance of irritating foods, so hopefully, those ulcers will look a lot better in April!
Lorance and Judy came on Sabbath, and spent the night. We were all able to spend some time together with Del and Chuck on Sabbath evening, then for Sunday morning breakfast. I felt a little handicapped because our cooktop died last week, so everything has to be done in a crock pot or the oven. Breakfast will better next time you come, I promise! In spite of that, we had a wonderful time being together. We are looking forward to Kevin and Lucy's wedding February 2, where we will expect to see many of you.
Our next appointment is February 6; we will spend Leland's 68th birthday traveling to the clinic, then go to supper with Chaunda somewhere. She will have just moved into her urban loft warehouse apartment, so we are looking forward to seeing what her artist soul will do with that space; something entirely unexpected I am sure!
Leland's PSA has continued the slow rise, but Dr. Chen says he was not on the X-tandi long enough to see a difference when his blood was drawn, only about 10 days. Otherwise, his labs looked good, and treatment stays the same for now. Next month will give us a better picture of the PSA trend, so we will have to wait on that to draw any conclusions as to the effectiveness of this new treatment.
After we finished at the clinic on Thursday, we drove to Portland-in more rain-and spent the weekend with Cherilyn, Todd, Phoenix and Cierra, my great niece who is staying with Cherilyn and Todd this year. We had a wonderful time as always, and got to see Phoenix climb the stairs-so cute! His parents allow him to climb as long as someone is right there to watch him, and catch him if he falls. Otherwise, there is a gate which is kept closed so he can't crawl over there when no one is watching.
Leland is a little low on energy, and has trouble staying awake if he is not actively doing something, so he spends a fair amount of time with his computer and a train layout that lets him be very creative while keeping him awake. He also makes little videos of the pictures we take of Phoenix, and we all enjoy those.
We stay busy with our various appointments and seeing friends and family. Today my doctor who did the endoscopy told me the biopsies were negative for Helicobacter and one other thing which I can't remember. So I will not need to take antibiotics for the ulcers, for which I am grateful. I will need another biopsy on the esphogeal ulcers in April to check healing or lack thereof. I am doing all I can to handle my stress more healthfully, meds, exercise, counseling, and avoidance of irritating foods, so hopefully, those ulcers will look a lot better in April!
Lorance and Judy came on Sabbath, and spent the night. We were all able to spend some time together with Del and Chuck on Sabbath evening, then for Sunday morning breakfast. I felt a little handicapped because our cooktop died last week, so everything has to be done in a crock pot or the oven. Breakfast will better next time you come, I promise! In spite of that, we had a wonderful time being together. We are looking forward to Kevin and Lucy's wedding February 2, where we will expect to see many of you.
Our next appointment is February 6; we will spend Leland's 68th birthday traveling to the clinic, then go to supper with Chaunda somewhere. She will have just moved into her urban loft warehouse apartment, so we are looking forward to seeing what her artist soul will do with that space; something entirely unexpected I am sure!
Monday, January 6, 2014
January 6, 2014 Back Again
I have not posted here since October 18; the time has gone by very quickly. Thanks to Google and Wild Blue and their "improvements" somehow my e-mail and my blogger accounts were merged. I was unable to figure out how to separate them and/or get into my blogger account. Leland was also unable to figure it out. Mark was able to ferret through though, so thanks to him, here we are again.
Leland's PSA has continued a slow rise, so at his appointment in December, the Dr. changed his medication from Zytiga to X-tandi. He is not tolerating it quite so well, has had some nausea and some joint pain, both of which are common side effects. However, he is still functioning and feeling fairly well.
He went outdoors on Sunday afternoon late when the temperature had risen to 36 and cut down a few trees for next year's firewood, then cut up several small ones which had been down for a couple of years. We brought them in with the small tractor and trailer and stacked it in the breezeway, as we had not put up quite enough this last fall. He did pretty well, but that was enough for one day. He is exercising every day and walking on the treadmill doing all he can to stay as strong as possible.
We did get the grant from the Patient Access Network; Praise God! It is for $7500 with another 7500 if needed. That is very good as X-tandi costs $60 per pill; Leland takes 4 of them every day, and the co-pays are very high.
My surgery results were good, no additional cancer was found, and the scarring is almost impossible to see, although there is scar tissue under the skin. Dr. says it will diminish with time. The stress chickens have come home to roost in my body this winter resulting in a sinus infection that refuses to disappear despite intensive treatment. Also this morning I underwent an Endoscopy resulting in a diagnosis of Ulcers, Hiatal hernia, Gastritis and Duodenitis. No wonder I had heartburn! The treatment is not too onerous, Omeprozole, and avoidance of irritating foods such as tomato sauce, citrus and spices. I had already decided I needed to start walking every day for stress reduction as well as weight control, so have a head start on that. We would rather walk outside, but when the weather is cold or wet, the treadmill is a good alternative.
We had a great Thanksgiving here with all the kids, Del and Chuck, Kathy and Dan and Cierra who is my great niece. The kids all stayed for the whole weekend, and we enjoyed every moment. Phoenix is crawling and all over the house-very cute and busy.
We spent Christmas in Portland at Todd and Cherilyn's. It was busy, fun, and filled with family plus friends dropping by every day. We are so blessed with our family and extended family! We are also blessed and grateful for this extended time Leland has with the good medical care he is receiving to manage the beast attempting to control his body. New Year Blessings to each of you.
Leland's PSA has continued a slow rise, so at his appointment in December, the Dr. changed his medication from Zytiga to X-tandi. He is not tolerating it quite so well, has had some nausea and some joint pain, both of which are common side effects. However, he is still functioning and feeling fairly well.
He went outdoors on Sunday afternoon late when the temperature had risen to 36 and cut down a few trees for next year's firewood, then cut up several small ones which had been down for a couple of years. We brought them in with the small tractor and trailer and stacked it in the breezeway, as we had not put up quite enough this last fall. He did pretty well, but that was enough for one day. He is exercising every day and walking on the treadmill doing all he can to stay as strong as possible.
We did get the grant from the Patient Access Network; Praise God! It is for $7500 with another 7500 if needed. That is very good as X-tandi costs $60 per pill; Leland takes 4 of them every day, and the co-pays are very high.
My surgery results were good, no additional cancer was found, and the scarring is almost impossible to see, although there is scar tissue under the skin. Dr. says it will diminish with time. The stress chickens have come home to roost in my body this winter resulting in a sinus infection that refuses to disappear despite intensive treatment. Also this morning I underwent an Endoscopy resulting in a diagnosis of Ulcers, Hiatal hernia, Gastritis and Duodenitis. No wonder I had heartburn! The treatment is not too onerous, Omeprozole, and avoidance of irritating foods such as tomato sauce, citrus and spices. I had already decided I needed to start walking every day for stress reduction as well as weight control, so have a head start on that. We would rather walk outside, but when the weather is cold or wet, the treadmill is a good alternative.
We had a great Thanksgiving here with all the kids, Del and Chuck, Kathy and Dan and Cierra who is my great niece. The kids all stayed for the whole weekend, and we enjoyed every moment. Phoenix is crawling and all over the house-very cute and busy.
We spent Christmas in Portland at Todd and Cherilyn's. It was busy, fun, and filled with family plus friends dropping by every day. We are so blessed with our family and extended family! We are also blessed and grateful for this extended time Leland has with the good medical care he is receiving to manage the beast attempting to control his body. New Year Blessings to each of you.
Friday, October 18, 2013
2013, Friday, October 18th. Another bend in the Road?
We are back from the clinic again. It was a beautiful drive up and back, and we had a good book to read which makes the time go more quickly; The Forgotten 500. A riveting story detailing the bold and daring rescue of over 500 Allied Airmen shot down over Yugoslavia during WWII and cared for by the Serbs right under the German's noses. Another piece of history of which we were unaware.
Leland's blood work looks great, he needs to increase his vitamin D3 as it is low, and he is trying some Wisconsin Gensing on Dr. Sweet's suggestion to see if it helps his energy levels. I love the way she really pays attention to these matters, and always has good suggestions for solving problems we run into.
As I said on the last post, the bone scan is mostly good, however, there are two new metastatic bone lesions and while his PSA is down to 4.19, lower than it has been since this began, it is still high. I have been in e-mail contact with another cancer survivor who volunteers with PCAI, a Pca List-Serve I joined, and from which we have learned much more that one can ever find out in a doctor's office. Chuck is a volunteer, and a real researcher who loves sharing his knowlege. He pointed out a couple of things we need to check into, and when I asked Dr. Chen about it, he was not knowlegeable about it at all. Chuck then sent info about an Oncologist specializing in Pca who practices at OSHU at the Knight Cancer Center, and on the website they were discussing the very problem which Leland may have-adaptive pathways which allow Pca to grow in spite of hormone treatment. So on Monday I will make an appointment there for Leland, if they are accepting new patients.
We found out today that the Chronic Disease Fund will be unable to assist us with co-pays in 2014 due to lack of funding, but they suggested another place, which I called and applied to this morning. We will hear from them this next week, and find out for sure and what the amount of the grant will be. We will be very grateful for whatever they can help us with.
Earlier in the summer I went to have a small lump on the side of my nose near my eye evaluated. Three doctors and one CT scan later, it was determined it should come off, and was most likely benign. The pathology report came back malignant to everyone's surprise, a rare cancer called a Micro Cystic Adnexal Carcinoma. In 25 years of looking at all kinds of cancer I had never heard of this one; I am pretty sure the pathologist had his books off the shelf researching this one before settling on the diagnosis. It arises in sweat glands mid face usually, primarily on women and there are only 300 per year world wide. They spread locally, but are rarely metastatic. Now I have to go back and have the incision removed, the bone scraped, and all tissue surrounding it cut away until the margins are clear. There is no way to know how extensive it will have to be until they actually do it, but hopefully it will be fairly small. My surgeon is also trained in plastic surgery, so the scars should not be too noticeable after it all heals up. The surgery will be Monday the 28th, and we will be glad to have it resolved.
I will post again after my surgery and let you all know how it came out and how large the excision had to be.
In the meantime, we are really enjoying the beautiful fall weather and gorgeous colors, and thankful for all the blessing we enjoy.
Leland's blood work looks great, he needs to increase his vitamin D3 as it is low, and he is trying some Wisconsin Gensing on Dr. Sweet's suggestion to see if it helps his energy levels. I love the way she really pays attention to these matters, and always has good suggestions for solving problems we run into.
As I said on the last post, the bone scan is mostly good, however, there are two new metastatic bone lesions and while his PSA is down to 4.19, lower than it has been since this began, it is still high. I have been in e-mail contact with another cancer survivor who volunteers with PCAI, a Pca List-Serve I joined, and from which we have learned much more that one can ever find out in a doctor's office. Chuck is a volunteer, and a real researcher who loves sharing his knowlege. He pointed out a couple of things we need to check into, and when I asked Dr. Chen about it, he was not knowlegeable about it at all. Chuck then sent info about an Oncologist specializing in Pca who practices at OSHU at the Knight Cancer Center, and on the website they were discussing the very problem which Leland may have-adaptive pathways which allow Pca to grow in spite of hormone treatment. So on Monday I will make an appointment there for Leland, if they are accepting new patients.
We found out today that the Chronic Disease Fund will be unable to assist us with co-pays in 2014 due to lack of funding, but they suggested another place, which I called and applied to this morning. We will hear from them this next week, and find out for sure and what the amount of the grant will be. We will be very grateful for whatever they can help us with.
Earlier in the summer I went to have a small lump on the side of my nose near my eye evaluated. Three doctors and one CT scan later, it was determined it should come off, and was most likely benign. The pathology report came back malignant to everyone's surprise, a rare cancer called a Micro Cystic Adnexal Carcinoma. In 25 years of looking at all kinds of cancer I had never heard of this one; I am pretty sure the pathologist had his books off the shelf researching this one before settling on the diagnosis. It arises in sweat glands mid face usually, primarily on women and there are only 300 per year world wide. They spread locally, but are rarely metastatic. Now I have to go back and have the incision removed, the bone scraped, and all tissue surrounding it cut away until the margins are clear. There is no way to know how extensive it will have to be until they actually do it, but hopefully it will be fairly small. My surgeon is also trained in plastic surgery, so the scars should not be too noticeable after it all heals up. The surgery will be Monday the 28th, and we will be glad to have it resolved.
I will post again after my surgery and let you all know how it came out and how large the excision had to be.
In the meantime, we are really enjoying the beautiful fall weather and gorgeous colors, and thankful for all the blessing we enjoy.
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