I saw Dr. Puhalla today. She seemed very upbeat about this new therapy working for me. She said there was a narrow window of eligibility for this particular trial and I fit into it.
1. I couldn't have had taxel previously (I haven't)
2. I couldn't have had more than two kinds of therapy for the cancer in my lungs (I haven't).
3. My kidney function has to be perfect (okay...we're working on that).
There aren't any open spots right now in the trial but they expect one to open up in the next 3-6 weeks. She said it wasn't a problem to wait that long but if it were to go past 6 weeks, I might want to consider starting a chemo treatment while waiting. One that wouldn't infringe on the trial.
This is how the PARP Inhibitor (ABT-888) was explained to me. You have DNA in your cells. Each cell has many mechanisms to repair itself if it gets "hurt". Cancer cells have fewer mechanisms but multiply faster. Some stop working because of the chemo but the cancer cell has another one (PARP) to fall back on to repair itself and keep on growing. This is especially true if you have the BRCT gene (hope I got that right), which i don't or if you're triple-negative, which I am.
The pill, the PARP inhibitor, stops that fall-back mechanism from working. It works in tandem with the chemo to shut down the cancer cell's ability to repair itself and it dies. Sounds like a plan to me!
I googled carboplatin ABT-888 and actually found out what the trial consists of in the UPMC system. I would start course 1 (chemo #1) by taking the carboplatin chemo for 30 minutes and then the taxel chemo for 3 hours. It will be an all-day affair because they will take my blood every hour to check certain levels. Good thing I have a port so they don't have to stick me each time. Three weeks later, I will start course 2. I will take the PARP pill twice a day for 7 days. On the third day, I will have my chemo treatment 30 min/3 hours and will be there all day while they test my blood to see how I handle the addition of the PARP pill. These first two treatments will be done at the Hillman Cancer Center in Oakland (part of Pittsburgh). Once they determine that I can continue with the treatments, I can transfer back to Magee-Women's Hospital. I will get Dawn, my previous chemo nurse. The treatments won't be all day, just however long it takes to administer the chemo. I think that I would undergo 6 treatments in all.
Dr. Puhalla said that there were very few clinics in the country administering this trial and they had people coming in to Pittsburgh from all over to participate in it. Next time I complain about having to go to dahntahn Pittsburgh, I'll remember that.
In regards to my kidney function, I have to work on hydrating myself. I don't drink that much during the day. I've always been yelled at about that. I have a glass of water with breakfast, one with lunch and one with dinner and that's usually it. I don't drink much pop and sometimes, instead of water at meals, I drink plain unsweetened iced tea. I need to push the fluids big time to get my creatonine (sp) down to 1.0 or lower. When I was in the office on the 12th, it was 1.2. When I saw the renal doctor for the last time on September 8th, it was .90. Dr. Puhall said that it could be because I wasn't drinking enough. I know I don't. I took Bill's Brita pitcher that he had at school and bought new filters for it tonight. It will be sitting on my desk at work to remind me to drink more.
I had been envisioning that I had 5 spots on my lungs and some in the lymph nodes between the lungs. I was trying to zap them with brain waves (can't hurt!). I asked Dr. Puhalla today if I could see the PET scan and see the spots. Unfortunately, there were many more than I was imagining, between 20 and 25. However, they weren't as big as I had imagined. I'll take that as good news. I didn't want to see the spots on the 12th as I was still in so much shock. I needed to put some time behind me.
I am extremely encouraged with today's appointment. To all who ask "how are you feeling?" I feel fine. I have no symptons, no pain, etc. This does not mean, however, that you need to stop putting me and my family in your prayers. I appreciate all the help I can get!
A friend of mine told me what his mother said to her cancer doctor when he told her she had only 6 months left. She said "I'm not done pissing off people". She lived another 10 years before it got her. Those who know me, also know that I am not done pissing people off....
And...in case you noticed, as of this post, I've decided to stop using initials for people. I'm gonna call them who they are. Dr. Lembersky is Dr. L, my medical oncologist. Dr. Puhalla is new to me so I hadn't called her by her initial. Dr. Z, my surgical oncologist, is Dr. Ziauddin. His name is too hard to say for most people so his office called him "Dr. Z".
Anyways, *I* feel good about today and excited to start this new journey. Just hope it doesn't take too long.
Take care peoples.
Suesan
Thursday, October 29, 2009
Tuesday, October 20, 2009
Bravo! Bravo!
They enjoyed my performance so much they've called me back for an encore.
So...
I had my CT scan to place the radiation markers on Friday, October 2nd. On Tuesday, October 6th, the radiation oncologist called me and said he couldn't do the radiation because the CT scan showed spots on my lungs. He told me I needed a PET scan and to see my medical oncologist (Dr. L) right away.
I had the PET scan on Friday, the 9th and on Monday, the 12th, I saw Dr. L. Bad news. The spots were cancer. They were in both lungs and also in the lymph nodes between the lungs.
I didn't get very far....
I have to undergo more chemo and an experimental pill called a PARP inhibitor. They just started having articles on it in the New England Journal of Medicine. Dr. L is hopeful. I'll have 2-3 chemos, then another CT scan to see if it's working.
I have an appointment on the 29th with another doctor in his group to go over what the requirements are for the clinical trial for the PARP inhibitor.
This was and still is a great shock to me. The spots weren't there in May when I had a CT scan while in the hospital with kidney failure. My last chemo was June 15th. It didn't take very long for it to spread.
I'm taking each day at a time and still continue to work, if only to take my mind off of things.
I'll know more once I have the meeting on the 29th.
Please keep me and my family in your prayers.
So...
I had my CT scan to place the radiation markers on Friday, October 2nd. On Tuesday, October 6th, the radiation oncologist called me and said he couldn't do the radiation because the CT scan showed spots on my lungs. He told me I needed a PET scan and to see my medical oncologist (Dr. L) right away.
I had the PET scan on Friday, the 9th and on Monday, the 12th, I saw Dr. L. Bad news. The spots were cancer. They were in both lungs and also in the lymph nodes between the lungs.
I didn't get very far....
I have to undergo more chemo and an experimental pill called a PARP inhibitor. They just started having articles on it in the New England Journal of Medicine. Dr. L is hopeful. I'll have 2-3 chemos, then another CT scan to see if it's working.
I have an appointment on the 29th with another doctor in his group to go over what the requirements are for the clinical trial for the PARP inhibitor.
This was and still is a great shock to me. The spots weren't there in May when I had a CT scan while in the hospital with kidney failure. My last chemo was June 15th. It didn't take very long for it to spread.
I'm taking each day at a time and still continue to work, if only to take my mind off of things.
I'll know more once I have the meeting on the 29th.
Please keep me and my family in your prayers.
Sunday, October 11, 2009
Breast Cancer Awareness Month
The company that I work for, NationalLink, had a special breakfast on Friday, October 9th, to promote Breast Cancer Awareness and the importance of yearly mammograms and monthly self-exams. They asked that everyone wear pink to help support. Of course, it was also Friday, two days before a Steeler's game so there was some competition for that in regards to wearing apparel. Some compromised by wearing a pink Steelers jersey.
I wanted to thank Maria and Lori for offering the breakfast and their support. It was enjoyed by all. Below are three pictures of my co-workers. There were some not in the pictures (they were actually working!)and I also appreciate all the support they've shown me since this "journey" started. It was and still is a great comfort to me. Thank you all again. We truly are a family.
ServiceLink, a partial owner of NationalLink and where I worked before transferring to NationalLink, is also offering workers a chance to donate to breast cancer research via their paychecks. It is appreciated.
I wanted to thank Maria and Lori for offering the breakfast and their support. It was enjoyed by all. Below are three pictures of my co-workers. There were some not in the pictures (they were actually working!)and I also appreciate all the support they've shown me since this "journey" started. It was and still is a great comfort to me. Thank you all again. We truly are a family.
ServiceLink, a partial owner of NationalLink and where I worked before transferring to NationalLink, is also offering workers a chance to donate to breast cancer research via their paychecks. It is appreciated.
Saturday, October 3, 2009
Saturday, October 3, 2009
It's been awhile since I've last posted. Let's see if I can remember everything that's happened.
Barbara, from the VFW Ladies Auxiliary Headquarters in Missouri called me last week to tell me that she wanted me to send back my cancer grant application along with canceled checks for the dues and she would have the check issued from their fund. This means I can return the check to the local auxiliary and they can put it back in their kitty. Barbara said that she wanted to make sure it was all above board and there wouldn't be any issue in the future of it looking like money was given to the post commander's wife. I'm relieved.
I went and saw Dr. S, a new doctor, who examined me to see if there were any signs of lymphodema and how I could avoid it, if possible. I don't have it as of yet, however, I can no longer wear my watch on my right arm or my rings. He gave me a prescription for a compression sleeve for when I fly. He said I wouldn't have to worry about wearing it for flights under two hours. He said flying aggravates the condition; it doesn't initiate it. Now I need to find the time to find a company that does custom sleeves.
When Sandy, my clinical coordinator came in to go over a questionnaire with me, I realized that it was September 23rd, the 1-year anniversary of me finding the lump. Maybe that's why I've been a little emotional lately. Sandy said "And you're still here!" I know she meant it to inspire me but it made me think. If I hadn't of found it when I did, where would I be now health-wise? Would I even be here? Kind of scary and depressing.
I also had my preliminary radiation appointment. When I first got there, I asked if they had some sort of parking plan. I would be there Monday-Friday for 5 weeks or so and it's $4.00 to park for the first hour. The receptionist told me that I would get a "Get out of Jail Free" card every visit. I told her about trying to go to another facility in Moon but couldn't because I would have to pay the specialist co-pay each visit. The insurance lady was sitting there and heard my conversation. While I was in seeing the doctor, she checked on my insurance. She came in to the room near the end and told me that I would STILL HAVE TO PAY the co-pay to go to Magee-Womens Hospital. Talk about upsetting. If I had to pay, there was no way I was going to drive to downtown Pittsburgh if I could avoid it. I told her that I would check again when I got home but I was told that if it was a hospital, it would be free to me. While they were making the appointment for a CT scan, she came back and told me I was right. No co-pay. Apparently they had the radiology doctor listed as being in a private office and not a hospital, so all is well on that front. Whew!
The radiologist told me that I would be undergoing 6 to 6 1/2 weeks of radiation because of the advanced nature of the cancer. He said the side effects were blisters (ouch), ribs more likely to fracture on that side (double ouch) and fatigue. I had no clue it would become tiring. We'll have to see how that works out.
I went back yesterday for the CT scan. First I had to go to the radiology clinic where they tested to see if I could raise my arm high enough. I passed! Then the doctor came in and I was attacked with a blue Sharpie. They drew marks all over my chest. I then went to the CT department where they put tape with metal in it to mark areas. They did the scan which took about 5 minutes. No iv or contrast. Woo hoo~! They left stickers on my chest and told me to try to leave them on as long as possible (adhesive reaction) but if it got too bad, I could remove them. It's already starting to itch. The nurse said that when I took a shower to try not to rub too hard so as to not lose the stickers. This means I will have sharpie marks on me for quite awhile. Guess it's turtleneck time.
They'll take a few days to plan the radiation and have me back in next week for another simulation. Then I'm not sure how long it will take after that to actually schedule the radiation treatments and start. I'm figuring the week after that.
I also was fitted for a prosthesis and bras. I'm having a little difficulty with the prosthesis. When I was fitted, it looked great. However, we did not take into account all the moving I do at my desk at work. Turning from side to side, reaching up to put files on shelves, etc. The prosthesis is moving around more than it should. I may have to duct tape that baby down but then I tend to have reactions to the adhesive. Oh well. I did learn some interesting facts. I was originally a D cup prior to surgery. I'm now in between an A and a B. The fitter told me that they carry up to L cups for Pittsburgh. L!!!! I've never heard of anything bigger than an E. When she handed me the fake boob (tired of spelling prosthesis), I couldn't believe how heavy it was. They try to balance the weight so that you don't feel too heavy on the side with the real breast. Btw, she gave me an A cup size. Could you imagine how heavy an L would be? You'd need two people just to help you hold it and get it into the bra. I couldn't get over that. I went back to work the next day and proudly showed off my "two".
I also saw Dr. Z, my surgical oncologist. This will be the last time I see him unless I pop in during radiation. He will be leaving the practice at the end of the month. I told him I was mad at him (he moved away when I said that..wonder why) and asked if he knew where he was going. He said no and I told him I had an extra room if he needed a place to stay. I thanked him for helping me through this. He was my first doctor and called me all the time to tell me what was going on, what would happen next and explained all the tests. He even called once on a Saturday. He's a very dedicated doctor. He said wasn't it funny that we had met previously when he called me out of the blue to notarize some documents for him. He just picked my name off of a notary website. Must have been karma.
He told me that I did not need to be seen by the surgical associates group unless I had an issue. Once a year I was to go to the wellness clinic where they would do a physical exam and other tests. I will miss him.
MFS came home from State College on Thursday night because he was having PRK (hope I got that right) surgery on his eyes the next morning. It's different than Lasik. It's supposed to have better results but the recovery time is longer and more painful. It's the only eye surgery the Navy will accept if you want to enter their flight program, which he does.
On the night he came home, I had moved a bag of socks for the troops off the rocking chair in the family room so that I could sit and talk to MFS and BDHA. While sitting there in the chair, I looked down and saw a white speck. For some reason it reminded me of my lost diamond and I told MFS that I had lost it a few weeks earlier. I reached down, picked up the speck and IT WAS MY DIAMOND! It had been on the chair and fell off when I moved the bag and sat down. I was stunned, to say the least. I still am.
MFS will be home this next week recovering from the surgery and seeing the eye doctor for follow-ups. He was given a pair of sunglasses and with the way his hair is cut, he reminds me of Ellwood (Dan Akroyd character) from Blues Brothers. How does it go..? "We have a full tank of gas, it's dark and we're wearing sunglasses."
BDHA is flying to Chicago today to attend his sister's tenure party. She is celebrating being a tenured professor at Illinois State University. I had thought about going but I've been tired lately with working so much and decided I needed some down time. Congratulations Dianne!
I think that's all that's happened since my last post. If not, I can always post again. :) I was planning on going back to bed (been tossing and turning since 4 am) but I just looked at the clock and realized I would have to get up in 15 minutes to take MFS to the eye doctor. Oh well. Afternoon naps are wonderful!
Take care peoples.
-Suesan
Barbara, from the VFW Ladies Auxiliary Headquarters in Missouri called me last week to tell me that she wanted me to send back my cancer grant application along with canceled checks for the dues and she would have the check issued from their fund. This means I can return the check to the local auxiliary and they can put it back in their kitty. Barbara said that she wanted to make sure it was all above board and there wouldn't be any issue in the future of it looking like money was given to the post commander's wife. I'm relieved.
I went and saw Dr. S, a new doctor, who examined me to see if there were any signs of lymphodema and how I could avoid it, if possible. I don't have it as of yet, however, I can no longer wear my watch on my right arm or my rings. He gave me a prescription for a compression sleeve for when I fly. He said I wouldn't have to worry about wearing it for flights under two hours. He said flying aggravates the condition; it doesn't initiate it. Now I need to find the time to find a company that does custom sleeves.
When Sandy, my clinical coordinator came in to go over a questionnaire with me, I realized that it was September 23rd, the 1-year anniversary of me finding the lump. Maybe that's why I've been a little emotional lately. Sandy said "And you're still here!" I know she meant it to inspire me but it made me think. If I hadn't of found it when I did, where would I be now health-wise? Would I even be here? Kind of scary and depressing.
I also had my preliminary radiation appointment. When I first got there, I asked if they had some sort of parking plan. I would be there Monday-Friday for 5 weeks or so and it's $4.00 to park for the first hour. The receptionist told me that I would get a "Get out of Jail Free" card every visit. I told her about trying to go to another facility in Moon but couldn't because I would have to pay the specialist co-pay each visit. The insurance lady was sitting there and heard my conversation. While I was in seeing the doctor, she checked on my insurance. She came in to the room near the end and told me that I would STILL HAVE TO PAY the co-pay to go to Magee-Womens Hospital. Talk about upsetting. If I had to pay, there was no way I was going to drive to downtown Pittsburgh if I could avoid it. I told her that I would check again when I got home but I was told that if it was a hospital, it would be free to me. While they were making the appointment for a CT scan, she came back and told me I was right. No co-pay. Apparently they had the radiology doctor listed as being in a private office and not a hospital, so all is well on that front. Whew!
The radiologist told me that I would be undergoing 6 to 6 1/2 weeks of radiation because of the advanced nature of the cancer. He said the side effects were blisters (ouch), ribs more likely to fracture on that side (double ouch) and fatigue. I had no clue it would become tiring. We'll have to see how that works out.
I went back yesterday for the CT scan. First I had to go to the radiology clinic where they tested to see if I could raise my arm high enough. I passed! Then the doctor came in and I was attacked with a blue Sharpie. They drew marks all over my chest. I then went to the CT department where they put tape with metal in it to mark areas. They did the scan which took about 5 minutes. No iv or contrast. Woo hoo~! They left stickers on my chest and told me to try to leave them on as long as possible (adhesive reaction) but if it got too bad, I could remove them. It's already starting to itch. The nurse said that when I took a shower to try not to rub too hard so as to not lose the stickers. This means I will have sharpie marks on me for quite awhile. Guess it's turtleneck time.
They'll take a few days to plan the radiation and have me back in next week for another simulation. Then I'm not sure how long it will take after that to actually schedule the radiation treatments and start. I'm figuring the week after that.
I also was fitted for a prosthesis and bras. I'm having a little difficulty with the prosthesis. When I was fitted, it looked great. However, we did not take into account all the moving I do at my desk at work. Turning from side to side, reaching up to put files on shelves, etc. The prosthesis is moving around more than it should. I may have to duct tape that baby down but then I tend to have reactions to the adhesive. Oh well. I did learn some interesting facts. I was originally a D cup prior to surgery. I'm now in between an A and a B. The fitter told me that they carry up to L cups for Pittsburgh. L!!!! I've never heard of anything bigger than an E. When she handed me the fake boob (tired of spelling prosthesis), I couldn't believe how heavy it was. They try to balance the weight so that you don't feel too heavy on the side with the real breast. Btw, she gave me an A cup size. Could you imagine how heavy an L would be? You'd need two people just to help you hold it and get it into the bra. I couldn't get over that. I went back to work the next day and proudly showed off my "two".
I also saw Dr. Z, my surgical oncologist. This will be the last time I see him unless I pop in during radiation. He will be leaving the practice at the end of the month. I told him I was mad at him (he moved away when I said that..wonder why) and asked if he knew where he was going. He said no and I told him I had an extra room if he needed a place to stay. I thanked him for helping me through this. He was my first doctor and called me all the time to tell me what was going on, what would happen next and explained all the tests. He even called once on a Saturday. He's a very dedicated doctor. He said wasn't it funny that we had met previously when he called me out of the blue to notarize some documents for him. He just picked my name off of a notary website. Must have been karma.
He told me that I did not need to be seen by the surgical associates group unless I had an issue. Once a year I was to go to the wellness clinic where they would do a physical exam and other tests. I will miss him.
MFS came home from State College on Thursday night because he was having PRK (hope I got that right) surgery on his eyes the next morning. It's different than Lasik. It's supposed to have better results but the recovery time is longer and more painful. It's the only eye surgery the Navy will accept if you want to enter their flight program, which he does.
On the night he came home, I had moved a bag of socks for the troops off the rocking chair in the family room so that I could sit and talk to MFS and BDHA. While sitting there in the chair, I looked down and saw a white speck. For some reason it reminded me of my lost diamond and I told MFS that I had lost it a few weeks earlier. I reached down, picked up the speck and IT WAS MY DIAMOND! It had been on the chair and fell off when I moved the bag and sat down. I was stunned, to say the least. I still am.
MFS will be home this next week recovering from the surgery and seeing the eye doctor for follow-ups. He was given a pair of sunglasses and with the way his hair is cut, he reminds me of Ellwood (Dan Akroyd character) from Blues Brothers. How does it go..? "We have a full tank of gas, it's dark and we're wearing sunglasses."
BDHA is flying to Chicago today to attend his sister's tenure party. She is celebrating being a tenured professor at Illinois State University. I had thought about going but I've been tired lately with working so much and decided I needed some down time. Congratulations Dianne!
I think that's all that's happened since my last post. If not, I can always post again. :) I was planning on going back to bed (been tossing and turning since 4 am) but I just looked at the clock and realized I would have to get up in 15 minutes to take MFS to the eye doctor. Oh well. Afternoon naps are wonderful!
Take care peoples.
-Suesan
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