Yesterday was a crazy day where I was on the go all day long. Luckily my jaw hasn't bothered me too much and I have been able to deal with the pain with just taking over the counter ibuprofen. I can definitely tell when it is starting to wear off though! Today I am trying to cut back even on that but I am not quite ready to go off of it completely. The first few hours after my surgery it took a while to get the bleeding to stop. I kept the gauze in from the surgeon's office for about an hour and then took it out and it started bleeding again so I had to put some more in. I kept checking it and I thought I was doing good and then I would feel it starting to bleed again. Keeping the gauze in was a pain though! It finally stopped bleeding right before I went to bed. I'm wondering if the Avastin helped contribute to the bleeding.
I am still not able to eat too much - just mostly soft things - which sometimes are not very filling!
Thursday, March 13, 2014
Tuesday, March 11, 2014
Had my tooth pulled by the oral surgeon today. It was pretty quick and I was home within an hour of my leaving home. My favorite part was a comment made by the oral surgeon while trying to extract the tooth. He said, "Wow! You really know how to grow roots!" Apparently my roots were pretty long and hard to extract. Now on to the healing part...
Labels:
dentist,
tooth problems
Thursday, March 6, 2014
Got a call from the study coordinator at Huntsman yesterday asking if I had looked over the info for the new study that she had given me at my last appointment at Huntsman. She said that they need me to look over and make a decision soon because our location has only been given 2 spots for the study and they need to fill them quickly or those spots may be taken from them. She said that the drug is in high demand across the country and right now is only being offered to people through studies like this one since it has not been FDA approved yet. The study is for a drug called Velaparib and is a PARP inhibitor. I need to look into it more and make a decision soon...
Thursday, February 27, 2014
I went in today for a consultation with the oral surgeon on having my tooth pulled and an implant put in. It was a really weird visit because somehow he was under the impression that we were going to pull the tooth today. He came back to talk to me for a minute and then said something like, "Okay, let's go back and get you numbed up." I stopped him and asked what he was talking about and he said, "Isn't that what you are here for." I said that I thought I was coming in just for a consultation because I have had some recent health problems that may affect my treatment. So I told him about the cancer and the Avastin that I have been on and he did express some concern with the Avastin but said that the only thing they can do is to keep an eye on the jaw and treat any infections that come with antibiotics and oral rinses. He also feels that it would be good to pull the tooth first and give the jaw a chance to heal and then if that heals well we can look into putting in an implant at a later date. The tooth is far enough back in my mouth that I don't think anyone will even notice unless I show it to them.
I still want to wait a few more weeks if I can before I have the tooth pulled so I went ahead and scheduled an appointment for March 11. DH isn't too crazy about just having the tooth pulled but at this point I think it is the best option for me and I think that if I can get it done in between any kind of cancer treatments then it is probably the best time frame for me as well.
I still want to wait a few more weeks if I can before I have the tooth pulled so I went ahead and scheduled an appointment for March 11. DH isn't too crazy about just having the tooth pulled but at this point I think it is the best option for me and I think that if I can get it done in between any kind of cancer treatments then it is probably the best time frame for me as well.
Labels:
dentist,
tooth problems
Tuesday, February 25, 2014
M&M had late start for school this morning because the juniors were taking the ACT test today. It ended up working out nicely because I was scheduled to go in and have my port flushed so she was able to stay home and watch MJ for me. I was originally planning on just taking MJ with me since it was going to be a really quick visit. (I'm not sure if they would have liked that or not though.)
I was only gone for about 30 minutes which was really nice. I checked in and they called me back after a couple of minutes and I was in and out of the infusion room in about 5 minutes.
I was only gone for about 30 minutes which was really nice. I checked in and they called me back after a couple of minutes and I was in and out of the infusion room in about 5 minutes.
Tuesday, February 18, 2014
After talking with the study coordinator and nurse at Huntsman, we have decided to pull me from the Avastin study. I would most likely be pulled from it anyways after just one more infusion and I think I need to get my tooth taken care of while I am not on it anymore. I have been kind of expecting it but it seems kind of weird. I have been on the Avastin for over 2 years now. Since I won't be going in in 3 weeks for my regular infusion I had them setup a time for me to go to the clinic in Daybreak to have my port flushed. It needs to be flushed about every 4 weeks to keep it functioning properly.
Labels:
avastin
Monday, February 17, 2014
My infection has cleared up and I take the last of the antibiotics today. Now I just hope the infection stays away!
Labels:
tooth problems
Monday, February 10, 2014
I called the dentist's office today to ask if I could get a prescription for an antibiotic. They called one in to the pharmacy today and I picked it up and started taking it. Hopefully it will clear up the infection quickly. I also called the oral surgeon's office and set up a consultation for an extraction and implant. And of course the way that the specialists work is that the earliest they can get me in is February 27 - which will be at about my 3 week mark from my last infusion. And they won't even do anything most likely for another couple of weeks after that.
Labels:
dentist
Sunday, February 9, 2014
I unfortunately think I am coming down with an infection in my tooth now... It has been causing me some pain today and general achiness in that area of my mouth... I think I will need to call the dentist in the morning to see about getting on an antibiotic and discussing which treatment option I think I will go with. Then I will probably need to call my oral surgeon to try and get in for a consultation. The fun just never seems to end for me!
I'm wondering if there is a correlation at all between my tooth problem and my rising CA-125 number.
I'm wondering if there is a correlation at all between my tooth problem and my rising CA-125 number.
Friday, February 7, 2014
One of the nurses from Huntsman called me today to talk some more about the Avastin with my dental work. She said that she had talked with my doctor and since the Avastin has a pretty long half-life, she recommends that I try and put off any major dental work for 3-4 weeks if I can since I just had an infusion on Wednesday. I will be taken off of the study and will keep my CT scan and lab work appointment in six weeks as well as meeting with the doctor. We will discuss then what our next step will be once we have results from the scan and labs.
I asked about getting my port flushed if I am not keeping my infusion appointment in 3 weeks. It is a good idea to have it flushed at least every 4-5 weeks and I will not be going back in now for another 6 weeks. We decided to set an appointment for the clinic near me for 3 weeks from now just to have it flushed. That should be a nice, quick visit.
Thursday, February 6, 2014
Some not so great news today. I had a dentist appointment this morning just for a rountine cleaning and mentioned that I had been having some tooth/jaw pain off and on in the right lower side of my mouth. This is the same section of my mouth that I have an implant already and then a year after the implant had to have an apicoectomy/root canal procedure on the tooth right behind the implant. After the hygienist did the cleaning, they took another x-ray of my lower right jaw and the dentist came in and looked at the x-rays and apparently I have some tooth decay on that tooth once again. The dentist drew me some pictures of what is going on with the tooth and told me what my possible options would be. My concern with hearing all of these options is that the Avastin that I am on has some warnings with it if there has to be any major dental work done. The Avastin interferes with the blood stream and clotting and healing. I expressed some concern to my dentist and he told me which of the 3 options would be the least invasive. I don't think that that options is the one that I would prefer to do though.
Then later on in the day I talked with the study coordinator at Huntsman and she said that my CA-125 number has now jumped up to 70. That is the upper limit for the study so she said that I can stay on the study through my next infusion in 3 weeks but once they get results from my next lab work in 6 weeks, I will probably have to be pulled from the study - assuming that my number stays the same or continues to go up. She said that the decision was up to me if I want to stay with the study through the next treatment or not. I then told the coordinator about my dentist appointment this morning and she said that she would look into the specific requirements and recommendations regarding dental work while on the Avastin. She said that she would discuss it with my doctor and let me know, but at this point I will most likely be pulling myself from the study to get this dental work done.
Then later on in the day I talked with the study coordinator at Huntsman and she said that my CA-125 number has now jumped up to 70. That is the upper limit for the study so she said that I can stay on the study through my next infusion in 3 weeks but once they get results from my next lab work in 6 weeks, I will probably have to be pulled from the study - assuming that my number stays the same or continues to go up. She said that the decision was up to me if I want to stay with the study through the next treatment or not. I then told the coordinator about my dentist appointment this morning and she said that she would look into the specific requirements and recommendations regarding dental work while on the Avastin. She said that she would discuss it with my doctor and let me know, but at this point I will most likely be pulling myself from the study to get this dental work done.
Wednesday, February 5, 2014
Met with my Huntsman doctor today. The nurse that drew my labs was looking at my info and asked how long I have been coming in for treatments. I said it has been a little of 2 years now. She was saying that she noticed my age and thought that I was awfully young to be going through all of this. She then asked how they found the cancer. It's hard to believe that it's been over two years since my diagnosis and even my surgery now.
So far all my labs look good but it takes a day or so to get the results for the CA-125 number. They said that that test they run in batches so they run it at a certain time during the day and do all of the CA-125 draws at the same time. I asked what the course of action would be if my number is above 70. They said that there are a couple of different options that we can go down. One would be to put me on an oral maintenance drug called Tamoxifen. This is one that is used quite often with breast cancer patients and the thinking is the same with ovarian cancer patients. With BRCA-1 patients it is thought that the female hormones can contribute to the cancer and the Tamoxifen helps to inhibit to production of those hormones. Another possible option is another study drug which is called a PARP inhibitor. There is a study that is apparently looking specifically at BRCA-1 patients and if the drug helps inhibit the growth of tumors. That is also an oral drug that I think they said is taken once or twice a day.
All of this of course is assuming that my next scan still comes up clear and that I feel fine with no other symptoms exhibiting themselves. If my next CT scan is not clear then we would look into another possible surgery and/or chemotherapy treatment. The hope though is that even if the cancer comes back, we will hopefully be catching it at such an early stage that it will be more easily treated than the first time around.
My blood pressure was normal when I went for my infusion so that part went relatively easy.
So far all my labs look good but it takes a day or so to get the results for the CA-125 number. They said that that test they run in batches so they run it at a certain time during the day and do all of the CA-125 draws at the same time. I asked what the course of action would be if my number is above 70. They said that there are a couple of different options that we can go down. One would be to put me on an oral maintenance drug called Tamoxifen. This is one that is used quite often with breast cancer patients and the thinking is the same with ovarian cancer patients. With BRCA-1 patients it is thought that the female hormones can contribute to the cancer and the Tamoxifen helps to inhibit to production of those hormones. Another possible option is another study drug which is called a PARP inhibitor. There is a study that is apparently looking specifically at BRCA-1 patients and if the drug helps inhibit the growth of tumors. That is also an oral drug that I think they said is taken once or twice a day.
All of this of course is assuming that my next scan still comes up clear and that I feel fine with no other symptoms exhibiting themselves. If my next CT scan is not clear then we would look into another possible surgery and/or chemotherapy treatment. The hope though is that even if the cancer comes back, we will hopefully be catching it at such an early stage that it will be more easily treated than the first time around.
My blood pressure was normal when I went for my infusion so that part went relatively easy.
Tuesday, January 14, 2014
I rescheduled my appointment that I was supposed to have last Wednesday to today instead because my kids are off-track from school and I have them in swimming lessons on Monday, Wednesday and Fridays. So I rescheduled for a Tuesday so that I wouldn't have to figure out how to get them to their lessons or have them miss.
Today ended up being such a pain for my infusion!! I wonder if the Tuesday thing threw it all off because they were not able to get ahold of my study coordinator and she had to approve the infusion before they would go ahead with even mixing it in the pharmacy. My appointment was set for 7:30 in the morning and I ended up having to wait over 2 hours for them to finally start the infusion! The nurse kept coming over to me and apologizing to me that it was taking so long! Once they finally got the drug everything went smoothly after that.
Today ended up being such a pain for my infusion!! I wonder if the Tuesday thing threw it all off because they were not able to get ahold of my study coordinator and she had to approve the infusion before they would go ahead with even mixing it in the pharmacy. My appointment was set for 7:30 in the morning and I ended up having to wait over 2 hours for them to finally start the infusion! The nurse kept coming over to me and apologizing to me that it was taking so long! Once they finally got the drug everything went smoothly after that.
Labels:
avastin
Wednesday, December 18, 2013
I had DH come with me to my appointment today. It is a little bit of mixed results from my labs and scan yesterday. The scan looks good other than a small lymph node near my groin area on my left side that is a little bigger than the last scan. They will keep an eye on that but are not too concerned about it yet. The bad news is that my CA-125 number has jumped up again - now it is at 51. They are concerned about that but not sure what it means yet - although DH got them to say that there has been research that shows that the CA-125 number can increase and it may take several months before anything shows up on a scan. Apparently they reviewed the requirements for the study though and I will not be pulled from it until my number goes above double the normal high of 35. So bottom line is they believe that my cancer may be slowly trying to come bak but they do not know where or how yet so there is still nothing to do other than wait until something more definitive shows up. They do feel that the Avastin may be slowing down whatever is happening though so they would like to see me stay on it. So I came to this appointment expecting to be kicked from the study only to find out that they would like me to still stay on it.
So after meeting with my doctor DH and I headed up to get some lunch before heading to the infusion room. My blood pressure was in the normal range and we actually got the Avastin relatively quickly.
Tuesday, December 17, 2013
Had my CT scan and labs drawn today at the South Jordan clinic. It went relatively smoothly. It's unfortunate that I consider them routine now... Tomorrow I have an appointment with my Huntsman doctor and will get the results. Here's hoping for the best!
Labels:
CT scan
Wednesday, November 27, 2013
My blood pressure was fine again today. It took almost 2 hours to finally get the Avastin (which was quite annoying), but once it came everything went smoothly. This may be my last Avastin infusion.
Labels:
avastin
Tuesday, November 26, 2013
Just got a call from the nurse at Huntsman saying that my breast MRI results came back normal. Definitely some good news in the midst of everything else.
Labels:
breast MRI,
test results
Monday, November 25, 2013
My dad came to watch MJ while I went in for my breast MRI. The nurse that accessed my port for me is the same one that I have talked to about my father-in-law in the past so she asked me how he was doing. I said that he had passed away and she was sorry to hear that. Although we both agreed that it was probably a blessing for him that he went quickly and didn't have to suffer for an extended length of time...
My MRI went fine and thankfully I didn't have to cough at all! (I still have a little bit of a cough.) One slightly annoying thing about each of my scans and MRIs is that I alway seem to have to fill out the same paperwork and answer the same questions everytime. It is slightly annoying when the answers have not changed from one scan to the next and they should have access to all of my medical records anyways! So no, I am not pregnant and there is no chance that I will be. My family history of breast cancer and ovarian cancer has not changed. I do not have diabetes and I am not on any type of dialysis. I have never worked as a metal worker or had any type of job working with metal. The only metal in my body is my power port and a dental implant. (Although I can never seem to find the right check box to mark for the power port. I actually had to look up some of the questions on the internet because I didn't even know what they were asking!) And even though they had called me two weeks before to ask me questions before the MRI that I cancelled, they had to call two weeks later and ask the exact same questions!
My MRI went fine and thankfully I didn't have to cough at all! (I still have a little bit of a cough.) One slightly annoying thing about each of my scans and MRIs is that I alway seem to have to fill out the same paperwork and answer the same questions everytime. It is slightly annoying when the answers have not changed from one scan to the next and they should have access to all of my medical records anyways! So no, I am not pregnant and there is no chance that I will be. My family history of breast cancer and ovarian cancer has not changed. I do not have diabetes and I am not on any type of dialysis. I have never worked as a metal worker or had any type of job working with metal. The only metal in my body is my power port and a dental implant. (Although I can never seem to find the right check box to mark for the power port. I actually had to look up some of the questions on the internet because I didn't even know what they were asking!) And even though they had called me two weeks before to ask me questions before the MRI that I cancelled, they had to call two weeks later and ask the exact same questions!
Labels:
breast MRI
Wednesday, November 20, 2013
We got back in town early this morning from Washington. We had a really nice funeral for Dad N. All four of his kids spoke, his daughter sang a beautiful song and all of the grandkids sang, "I Am a Child of God." My husband helped to write a nice obituary for him: Dad N's obituary
It all still seems surreal that he is gone. I imagine we will be feeling that way for quite some time.
It all still seems surreal that he is gone. I imagine we will be feeling that way for quite some time.
Tuesday, November 12, 2013
Today I had an appointment with my surgeon. She was wondering if maybe my recent sickness threw off my CA-125 number. She seemed a little more concerned about the recent jump but also agreed that there is really nothing to do unless we actually have more definitive proof that cancer has returned and that we can see it somewhere. Other than that things were fine with the appointment. I will go back again in 4 months.
My husband flew up to Washington this evening to be with his mom and siblings. There is a lot of planning they need to do and loose ends to tie.
My husband flew up to Washington this evening to be with his mom and siblings. There is a lot of planning they need to do and loose ends to tie.
Subscribe to:
Posts (Atom)