Just hopping on to let you know that I went in for my check up with Dr. Naik. She said everything is looking good and that she'll see me in 6 months. And so begins my bi-annual check ups! Fun times.
I am taking the tamoxifen. Today marks the fifth whole day, but my 6th pill will be taken tonight. So far, I am not seeing any horrible side effects. In fact, none at all. But I may be singing a different tune in another few weeks or so.
I have started working out more. I am working out on my Wii Fit. Feels good to be exercising on a regular basis again. I've been slacking... and I shouldn't be. Anywho, I was told by Dr. Chui that side effects are lessened if I work out. So I am taking his advice.
This is a blog about one woman's day-to-day fight against breast cancer. It's about open communication so everyone she loves and knows... and even those she does not know, understand the ups and downs of fighting such a horrible disease.
Showing posts with label tamoxifen. Show all posts
Showing posts with label tamoxifen. Show all posts
Thursday, October 25, 2012
Sunday, October 21, 2012
Day 282 - Phase 4 Hormone Therapy: Tamoxifen
It's been awhile since I last posted. And that I feel is a real good thing. There wasn't anything really to post. So let me catch up.
Following my last radiation treatment, it took about a week and a half for my skin to feel better. My skin was really red and mad. It wasn't so much the skin on the breast itself, but what really hurt was where the blister had formed and then peeled. I was putting silvadene and aquafor on the blister. I was also putting it under my breast as well because that was the next area that hurt. After the first week and a half, things calmed down. My skin started to crisp up and then peel. I was peeling like a snake molting. Some of the uncomfortableness was because the skin was drying up and when I went to stretch, the skin would crack. Think of chapped lips. My skin cracked the most right under the breast. The skin on the breast itself was fine. It just peeled like having a sunburn. The skin under my arm cracked like the skin under the breast. I had a two week check up on Oct. 2 with Dr. Marquez and she said I was looking good. I now have a final check up on my skin on November 7. My skin is feeling good. It no longer feels like paper. It actually feels like healthy skin. I have been spreading Eucerin Intense Dry skin lotion on it. It absorbs really quickly and also has an exfoliant in it. It works really well.
I've been stretching my arm out every day. I was told by my physical therapist that I want to continue to do my stretches every day for a year after my radiation. I can understand why. With my skin being less elastic, it helps to stretch. Plus the radiation also damages the muscle. So my body is repairing everything. But I have great range... I didn't lose any of it.
Work continues to go smoothly. I got the shift I wanted 4a-12.30p Monday through Friday. However, since the shift bid, we have been required to work a mandatory 45 hours a week. I don't think I've ever worked just 40 hours, but to make it mandatory really sucks. Plus you have to do it when they schedule it for you. But hey, at least I have a job. And last month my team did really well, so I will get a really nice bonus. Hooray. Just in time for Christmas and the cruise. Remember, if anyone wants to go on the cruise with us, I'd love it. :)
On Friday, I met with Dr. Steven Chui. He's my new oncologist. He's nice. I like him, but he's no Dr. Luoh. I really miss him. Our appointment was at 2.30p, but we didn't get into the office until 3.40. He apparently had an emergency procedure and that's why he was running late. Oh well, it happens. I did end up getting a little nap in while waiting.
So he was very pleasant. He knows his stuff. He didn't want to insult my intelligence and said so from the beginning because he (apparently) knew that I knew my stuff. He started off talking about studies of tamoxifen. He said that five years is good, but what he's found is that having younger women on tamoxifen may fair better in the long run. He said that hormone positive cancers have a recurrence of coming back later rather than sooner. So for me, he said that studies show that the cancer would come back ten years or more. He cited an example that a woman had breast cancer and 31 years later she has a brain tumor that is estrogen positive and has the same exact characteristics as her original breast cancer. Whoa! And I just want to let you know that I am paraphrasing all the stuff he talked about because he talked A LOT. So he didn't want me to be opposed to being on tamoxifen for more than five years. We also talked about getting the ovaries taken out because I am BRCA positive. He said that while I am eager to get things taken care of... I may want to wait on that because it puts me on instant menopause. In addition, I could get adverse effects of menopause. He suggested that I wait and then he give me a shot to suppress estrogen in my body and see how I do. But then he also flipped the coin and said that since I am BRCA+ it's a little different. To me, I know that I am going to get my ovaries taken out. Whether I do it now or later, the effects are going to be the same. With the shot to suppress estrogen, that's more for the women who can elect to have it taken out.... ones who aren't genetically disposed. In any case, it's something I'll have to discuss more. We also talked about if I do get my ovaries taken out, Dr. Luoh had said that he would put me on a different drug. The drug is for post menopausal women. Dr. Chui said that that drug is far superior [then tamoxifen], but it does cause bone loss. He said that with my age and my race, I am at a higher risk of osteoperosis. Tamoxifen actually helps with bone density. However, I could go on tamoxifen and switch it out with this other drug for a series of years - back and forth. Then I could get benefits of both drugs. All I said was "sign me up." I knew the risks and the benefits. I will trust my doctor because I know that they keep up with the latest and greatest information. I knew I'd have to go on tamoxifen for a couple of years so let's start now! In another few years I can ask about new drugs or switching to another. And Dr. Chui said that they have now started a new study - 31,000 people - to see if the effects of staying on tamoxifen for more than 5 years works. The initial study, which started in the 70s was a double blind study: tamoxifen vs. placebo. That was a year long study. They found that women who took the drug fared better, so they asked them to continue on for another year and another year and so on and so forth. That's how researchers came to the conclusion that 5 years of tamoxifen was good. But as the study went longer, the base size of participants shrunk. So that's why the study isn't very conclusive after the five years. But we shall see in five years. By then there may be a totally new drug out there. Or researchers will have discovered how to repair the DNA fix. Five years is an eternity.
So, yesterday I picked up my tamoxifen prescription and I took it last night before I went to bed. Some side effects: hot flashes, tiredness (goes away), flare reaction, mood changes, nausea, vomiting, blood clots, endometrial cancer, vaginal dryness... the list goes on. Now we wait and see.
Tomorrow I have a follow up appointment with Dr. Naik. See how my boobies are healing. November 5 I have an appointment with Dr. Thakar to see if I can get the tissue expanders out and the implants in. November 7 I have my follow up with Dr. Marquez for post radiation. Then... it's wait and see.
Following my last radiation treatment, it took about a week and a half for my skin to feel better. My skin was really red and mad. It wasn't so much the skin on the breast itself, but what really hurt was where the blister had formed and then peeled. I was putting silvadene and aquafor on the blister. I was also putting it under my breast as well because that was the next area that hurt. After the first week and a half, things calmed down. My skin started to crisp up and then peel. I was peeling like a snake molting. Some of the uncomfortableness was because the skin was drying up and when I went to stretch, the skin would crack. Think of chapped lips. My skin cracked the most right under the breast. The skin on the breast itself was fine. It just peeled like having a sunburn. The skin under my arm cracked like the skin under the breast. I had a two week check up on Oct. 2 with Dr. Marquez and she said I was looking good. I now have a final check up on my skin on November 7. My skin is feeling good. It no longer feels like paper. It actually feels like healthy skin. I have been spreading Eucerin Intense Dry skin lotion on it. It absorbs really quickly and also has an exfoliant in it. It works really well.
I've been stretching my arm out every day. I was told by my physical therapist that I want to continue to do my stretches every day for a year after my radiation. I can understand why. With my skin being less elastic, it helps to stretch. Plus the radiation also damages the muscle. So my body is repairing everything. But I have great range... I didn't lose any of it.
Work continues to go smoothly. I got the shift I wanted 4a-12.30p Monday through Friday. However, since the shift bid, we have been required to work a mandatory 45 hours a week. I don't think I've ever worked just 40 hours, but to make it mandatory really sucks. Plus you have to do it when they schedule it for you. But hey, at least I have a job. And last month my team did really well, so I will get a really nice bonus. Hooray. Just in time for Christmas and the cruise. Remember, if anyone wants to go on the cruise with us, I'd love it. :)
On Friday, I met with Dr. Steven Chui. He's my new oncologist. He's nice. I like him, but he's no Dr. Luoh. I really miss him. Our appointment was at 2.30p, but we didn't get into the office until 3.40. He apparently had an emergency procedure and that's why he was running late. Oh well, it happens. I did end up getting a little nap in while waiting.
So he was very pleasant. He knows his stuff. He didn't want to insult my intelligence and said so from the beginning because he (apparently) knew that I knew my stuff. He started off talking about studies of tamoxifen. He said that five years is good, but what he's found is that having younger women on tamoxifen may fair better in the long run. He said that hormone positive cancers have a recurrence of coming back later rather than sooner. So for me, he said that studies show that the cancer would come back ten years or more. He cited an example that a woman had breast cancer and 31 years later she has a brain tumor that is estrogen positive and has the same exact characteristics as her original breast cancer. Whoa! And I just want to let you know that I am paraphrasing all the stuff he talked about because he talked A LOT. So he didn't want me to be opposed to being on tamoxifen for more than five years. We also talked about getting the ovaries taken out because I am BRCA positive. He said that while I am eager to get things taken care of... I may want to wait on that because it puts me on instant menopause. In addition, I could get adverse effects of menopause. He suggested that I wait and then he give me a shot to suppress estrogen in my body and see how I do. But then he also flipped the coin and said that since I am BRCA+ it's a little different. To me, I know that I am going to get my ovaries taken out. Whether I do it now or later, the effects are going to be the same. With the shot to suppress estrogen, that's more for the women who can elect to have it taken out.... ones who aren't genetically disposed. In any case, it's something I'll have to discuss more. We also talked about if I do get my ovaries taken out, Dr. Luoh had said that he would put me on a different drug. The drug is for post menopausal women. Dr. Chui said that that drug is far superior [then tamoxifen], but it does cause bone loss. He said that with my age and my race, I am at a higher risk of osteoperosis. Tamoxifen actually helps with bone density. However, I could go on tamoxifen and switch it out with this other drug for a series of years - back and forth. Then I could get benefits of both drugs. All I said was "sign me up." I knew the risks and the benefits. I will trust my doctor because I know that they keep up with the latest and greatest information. I knew I'd have to go on tamoxifen for a couple of years so let's start now! In another few years I can ask about new drugs or switching to another. And Dr. Chui said that they have now started a new study - 31,000 people - to see if the effects of staying on tamoxifen for more than 5 years works. The initial study, which started in the 70s was a double blind study: tamoxifen vs. placebo. That was a year long study. They found that women who took the drug fared better, so they asked them to continue on for another year and another year and so on and so forth. That's how researchers came to the conclusion that 5 years of tamoxifen was good. But as the study went longer, the base size of participants shrunk. So that's why the study isn't very conclusive after the five years. But we shall see in five years. By then there may be a totally new drug out there. Or researchers will have discovered how to repair the DNA fix. Five years is an eternity.
So, yesterday I picked up my tamoxifen prescription and I took it last night before I went to bed. Some side effects: hot flashes, tiredness (goes away), flare reaction, mood changes, nausea, vomiting, blood clots, endometrial cancer, vaginal dryness... the list goes on. Now we wait and see.
Tomorrow I have a follow up appointment with Dr. Naik. See how my boobies are healing. November 5 I have an appointment with Dr. Thakar to see if I can get the tissue expanders out and the implants in. November 7 I have my follow up with Dr. Marquez for post radiation. Then... it's wait and see.
Sunday, April 29, 2012
Day 103 - Round 7!
I know I am late posting this... but I've been busy. :)
Round 7... means I only have one more treatment to go! I'm almost there!
On Thursday we met with Dr. Luoh and went over the test results of the ultrasound. He's very happy that everything is going down and that I am still responding to treatments. We are going to keep on the same regimine. He was also pleased that I didn't get as sick as I had been getting. So he ordered another hydration of a liter of saline for Friday and then 4mg of Neulasta to follow. I do think that is making a difference. We also discussed my BRCA2 positive result. He said that will most likely change some of the post treatment. I was going to go on tamoxifen for five years, but since I tested positive, he says that I will most likely get an oophorectomy and then be on tamoxifen for about 1-2 years and then I will be put on a different hormone suppressor. We want to get rid of the estrogen in my body. He said if I don't want to do the oophorectomy, they have drugs to put my ovaries to sleep. In any case, either way, estrogen will drop about 92% in my body. There are other organs that would provide the other 8% of estrogen, so I would never quite be free of estrogen. But a 92% decrease is good. I like Dr. Luoh. He is so thorough. I also asked him after my chemo-sucky treatments will there be more cancer in my body. He said yes, and that's what the hormone therapy and stuff is for. We are going to starve the cancer by getting rid of the estrogen receptors. Makes sense. He said that there may still be some "floating" around in my body... most likely from where my tumor is. But he's confident I will be fine. I trust him. Oh yes, and then he told me that he wanted me to have an ultrasound done on my left leg. He was worried about me having deep vein thrombosis (DVT)... or blood clot in my leg after last week and my spleen issue. So after my chemo-sucky treatment, I was to go downstairs to the third floor to get an u/s. Fun times.
Next on the list of things to do was to talk to the genetic counselors. That was fast and easy. I had many of my questions answered when Kelly called me to give me the results. So there was nothing new there. They just suggest that I get out the parts before I am 40. Most likely I will get them out sometime this year, either during the double mastectomy or reconstruction. Everything seems to be going as scheduled.
Following my chemo-sucky, I went downstairs for my ultrasound. They found nothing. But it was cool looking at my veins and arteries in my leg. I am learning so much stuff about my anatomy.
Round 7... means I only have one more treatment to go! I'm almost there!
On Thursday we met with Dr. Luoh and went over the test results of the ultrasound. He's very happy that everything is going down and that I am still responding to treatments. We are going to keep on the same regimine. He was also pleased that I didn't get as sick as I had been getting. So he ordered another hydration of a liter of saline for Friday and then 4mg of Neulasta to follow. I do think that is making a difference. We also discussed my BRCA2 positive result. He said that will most likely change some of the post treatment. I was going to go on tamoxifen for five years, but since I tested positive, he says that I will most likely get an oophorectomy and then be on tamoxifen for about 1-2 years and then I will be put on a different hormone suppressor. We want to get rid of the estrogen in my body. He said if I don't want to do the oophorectomy, they have drugs to put my ovaries to sleep. In any case, either way, estrogen will drop about 92% in my body. There are other organs that would provide the other 8% of estrogen, so I would never quite be free of estrogen. But a 92% decrease is good. I like Dr. Luoh. He is so thorough. I also asked him after my chemo-sucky treatments will there be more cancer in my body. He said yes, and that's what the hormone therapy and stuff is for. We are going to starve the cancer by getting rid of the estrogen receptors. Makes sense. He said that there may still be some "floating" around in my body... most likely from where my tumor is. But he's confident I will be fine. I trust him. Oh yes, and then he told me that he wanted me to have an ultrasound done on my left leg. He was worried about me having deep vein thrombosis (DVT)... or blood clot in my leg after last week and my spleen issue. So after my chemo-sucky treatment, I was to go downstairs to the third floor to get an u/s. Fun times.
Next on the list of things to do was to talk to the genetic counselors. That was fast and easy. I had many of my questions answered when Kelly called me to give me the results. So there was nothing new there. They just suggest that I get out the parts before I am 40. Most likely I will get them out sometime this year, either during the double mastectomy or reconstruction. Everything seems to be going as scheduled.
Following my chemo-sucky, I went downstairs for my ultrasound. They found nothing. But it was cool looking at my veins and arteries in my leg. I am learning so much stuff about my anatomy.
Monday, April 23, 2012
Day 100 - I know what caused the cancer!
Honestly... give a girl a break.
Got the genetic testing back. Instead of testing negative for BRCA 1 or 2, I tested postive for BRCA 2. That's the genetic mutation in the 13th chromosome. So for me they suggest a double mastectomy (was going to do that) and an oopherectomy or the removal of the ovaries and fallopian tubes. Doing a double mastectomy reduces the chances of me have a new breast cancer by 95%, so there's a 5% chance I may get another cancer in my breast (not caused by the initial cancer that I have now). I will have an breast exam twice a year for the rest of my life. That may be just a physical exam, or it could entail a mammogram. They suggest a surgeon who specializes in the breast because I will be getting reconstruction. If I don't get a double mastectomy, I increase the chances of me getting a new cancer in my breasts. In addition, I would have to get a twice yearly exam where I would get a mammogram done one month, then six months later a breast MRI (uh, no!). So for the ovarian cancer, I have a 27% chance of getting ovarian cancer. If I get an oopherectomy, I reduce my chances of getting an abdomen cancer (same cells found in the ovaries/fallopian tubes) to 2-5%. Taking tamoxifen (which is an estrogen blocker) for five years reduces the chance of me getting breast cancer again by 50%.
I will meet with the genetic counselor on Thursday. But I told the lady that I had to ask these questions now otherwise I will not be able to sleep. She understood and said she'd do the same. I asked her which is more common... BRCA 1 OR 2. She says the more common genetic default is those with BRCA1. However, they are more commonly known to be triple negative where they test negative for estrogen, progesterone and HER2 neu receptors and is a little more difficult to treat. They are also at a 45% risk of getting ovarian cancer. So I guess being BRCA2 is better? But I don't come without risks. I have a a 7% chance of getting pancreatic cancer. And I am at a higher risk for melanoma (thank goodness I am not a sun worshipper). The melanoma is screened by skin exams. As for the pancreatic cancer... I will have to find out about that. I do know that a surgeon will screen for that... however, I don't know if there is a blood cancer marker that they test for.
If I don't do an oopherectomy, I can keep screening for a cancer marker via a blood test. However, ovarian cancer is very hard to detect until it is farther along in its cancer making ways. Honestly, I was thinking about doing an oopherectomy anyway. Figuring that the ovaries are the providers of the hormone estrogen. It just sucks that I have to make the choice. I'll let you know what I decide.
So I am here thinking about my news. It's not a death sentence. It's just not what I really want to hear. I'd rather have heard... good news... you test negative. But now I do know why I got breast cancer at such an early age. It just sucks to have to do all these things so early in life. I feel deflated. I love my life and I will do anything to extend it... but to lose my boobs, then to think that I am going to lose my ovaries and fallopian tubes. I might as well do a hysterectomy because then I won't have periods anymore! Oooh there's an idea. I guess what's most troubling for me is that Amelia and Elaina have a 50/50 chance of being positive for the genetic mutation. I feel a bit guilty to burden them with the idea that some day they may get breast cancer. They may choose to get tested, or they may not choose. We shall see. Maybe by the time they turn 18 (when they can make that decision themselves) we will have found a positive cure for breast cancer. But I guess I am feeling most blue because of what their lives will entail, their uncertainty, or their decision they will have to make... to know if they are a carrier. It just sucks. And I am bummed.
By the way... I had nothing to write on... so I wrote all the information down about the test results on the back of our voter pamphlet guide! hahaha!
Tomorrow I have an appointment to see if my mass shrunk. It's another ultrasound. Will let you know!
Got the genetic testing back. Instead of testing negative for BRCA 1 or 2, I tested postive for BRCA 2. That's the genetic mutation in the 13th chromosome. So for me they suggest a double mastectomy (was going to do that) and an oopherectomy or the removal of the ovaries and fallopian tubes. Doing a double mastectomy reduces the chances of me have a new breast cancer by 95%, so there's a 5% chance I may get another cancer in my breast (not caused by the initial cancer that I have now). I will have an breast exam twice a year for the rest of my life. That may be just a physical exam, or it could entail a mammogram. They suggest a surgeon who specializes in the breast because I will be getting reconstruction. If I don't get a double mastectomy, I increase the chances of me getting a new cancer in my breasts. In addition, I would have to get a twice yearly exam where I would get a mammogram done one month, then six months later a breast MRI (uh, no!). So for the ovarian cancer, I have a 27% chance of getting ovarian cancer. If I get an oopherectomy, I reduce my chances of getting an abdomen cancer (same cells found in the ovaries/fallopian tubes) to 2-5%. Taking tamoxifen (which is an estrogen blocker) for five years reduces the chance of me getting breast cancer again by 50%.
I will meet with the genetic counselor on Thursday. But I told the lady that I had to ask these questions now otherwise I will not be able to sleep. She understood and said she'd do the same. I asked her which is more common... BRCA 1 OR 2. She says the more common genetic default is those with BRCA1. However, they are more commonly known to be triple negative where they test negative for estrogen, progesterone and HER2 neu receptors and is a little more difficult to treat. They are also at a 45% risk of getting ovarian cancer. So I guess being BRCA2 is better? But I don't come without risks. I have a a 7% chance of getting pancreatic cancer. And I am at a higher risk for melanoma (thank goodness I am not a sun worshipper). The melanoma is screened by skin exams. As for the pancreatic cancer... I will have to find out about that. I do know that a surgeon will screen for that... however, I don't know if there is a blood cancer marker that they test for.
If I don't do an oopherectomy, I can keep screening for a cancer marker via a blood test. However, ovarian cancer is very hard to detect until it is farther along in its cancer making ways. Honestly, I was thinking about doing an oopherectomy anyway. Figuring that the ovaries are the providers of the hormone estrogen. It just sucks that I have to make the choice. I'll let you know what I decide.
So I am here thinking about my news. It's not a death sentence. It's just not what I really want to hear. I'd rather have heard... good news... you test negative. But now I do know why I got breast cancer at such an early age. It just sucks to have to do all these things so early in life. I feel deflated. I love my life and I will do anything to extend it... but to lose my boobs, then to think that I am going to lose my ovaries and fallopian tubes. I might as well do a hysterectomy because then I won't have periods anymore! Oooh there's an idea. I guess what's most troubling for me is that Amelia and Elaina have a 50/50 chance of being positive for the genetic mutation. I feel a bit guilty to burden them with the idea that some day they may get breast cancer. They may choose to get tested, or they may not choose. We shall see. Maybe by the time they turn 18 (when they can make that decision themselves) we will have found a positive cure for breast cancer. But I guess I am feeling most blue because of what their lives will entail, their uncertainty, or their decision they will have to make... to know if they are a carrier. It just sucks. And I am bummed.
By the way... I had nothing to write on... so I wrote all the information down about the test results on the back of our voter pamphlet guide! hahaha!
Tomorrow I have an appointment to see if my mass shrunk. It's another ultrasound. Will let you know!
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