My name is Julie I've got ovarian cancer was diagnosed 2yr ago stage 4 my oncologist can't operate so I've had 6 rounds of carboplatin and pitaxel,had to go on parp inhibitors which were great olyrib but now theve stopped working,got to have another 6 rounds of carboplatin,I was hoping they would give me another inhibitor but they said can't have anymore,so feeling fed up.
Hi Julie, my heart is with you….it’s so scary and difficult to have OC. So understandable that you feel fed up. Do you know why surgery isn’t an option? I’m hoping they will find an option that will keep the cancer from spreading. ♥️♥️
My name is Julie I've got ovarian cancer was diagnosed 2yr ago stage 4 my oncologist can't operate so I've had 6 rounds of carboplatin and pitaxel,had to go on parp inhibitors which were great olyrib but now theve stopped working,got to have another 6 rounds of carboplatin,I was hoping they would give me another inhibitor but they said can't have anymore,so feeling fed up.
I always have a blood test before each treatment. The haemoglobin was a bit lower again, but no need for a blood transfusion. The Mg was last checked in January and it was slightly lower than normal. This time it was very low. He might have asked for it this time because of the symptoms I described to him.
If the scans are not clear on 2nd May, the intention will be three more treatments. If it’s clear, I can stop. I won’t find out for sure until I see the doctor after the scans.
@jenelleseaman You certainly have an attentive medical team. I'm glad to hear you are done with treatment for awhile. What side effects have you been experiencing and is this why the doctor ordered the magnesium infusion and magnesium tables you will take daily?
I had the next treatment today. Hopefully it will be the last for a little while. I have another PET CT scan in 4 weeks, and then we decide what follows.
My Mg was very low, so along with the carboplatin and Caelyx, I had a magnesium infusion. I also have to take 6 magnesium tablets a day until I see the doctor again. It explains quite a few side effects I’ve been experiencing.
In the early days the oncologist would get me to do a CT scan if the ca125 was creeping up in consecutive 3 monthly visits. For example it may have been 6, then 12 and then 20. That was enough to say it was back. I’ve had so many scans because it has been 15 years since I was diagnosed. I have always visited a doctor every 3 months, never been longer than that, even when I have been in remission.
In terms of teaching, I also teach different levels of Mathematics to the 17/18 year old students. I love both Chemistry and Mathematics, but Chemistry is definitely my passion and the whole school knows me for it!
My treatment is at the Sydney Adventist Hospital in Sydney, Australia. There’s an Integrated Cancer Centre there that is where all involved, even some that don’t know me, get together and discuss individual cases. I know I’ve been the subject of discussion quite a few times over the years. I’m very thankful for the care that I have received from everyone there.
@jenelleseaman I can just imagine that you've been a topic in these medical discussions with your original diagnosis. Since you return so frequently (still every 3 months?) to Sydney Adventist Hospital you must know just about everyone in the Integrated Cancer Centre. And they know you.
Yes, I know what you mean about having a passion for a subject matter. The students always know when their teacher loves the subject they are teaching. It sounds like one of those employment opportunities that the salary is almost a bonus because you love it so much. I say "almost" because of course you should be paid well for teaching.
In the early days the oncologist would get me to do a CT scan if the ca125 was creeping up in consecutive 3 monthly visits. For example it may have been 6, then 12 and then 20. That was enough to say it was back. I’ve had so many scans because it has been 15 years since I was diagnosed. I have always visited a doctor every 3 months, never been longer than that, even when I have been in remission.
In terms of teaching, I also teach different levels of Mathematics to the 17/18 year old students. I love both Chemistry and Mathematics, but Chemistry is definitely my passion and the whole school knows me for it!
My treatment is at the Sydney Adventist Hospital in Sydney, Australia. There’s an Integrated Cancer Centre there that is where all involved, even some that don’t know me, get together and discuss individual cases. I know I’ve been the subject of discussion quite a few times over the years. I’m very thankful for the care that I have received from everyone there.
The only way that they can know if I have cancer now is by having a PET scan. When on chemo I have had one every 3 cycles, where a cycle is a month. When the scan has been ‘clear’ it’s 6 months, just because I didn’t want to know! I counted … I’m up to 35 CT scans and 13 PET CT scans.
I teach Chemistry to Year 11 and 12 students. These kids are 17/18 years old, and in their final years of secondary education. I get them ready for university! I’ve taught some great kids, and have many friends who always ask me how I’m going.
@jenelleseaman Wow, that's surely a high count for CT and PET/CT scans. You must be an expert now at lying very still during these scans. It's not pleasant to keep returning for a scan. I get very anxious before my CT scans wondering what they will find.
Somehow when you mentioned that you teach I was envisioning you with very young children. Students in the 17/18 years old range is a whole other experience. How wonderful that you have them in their final year and get them ready to go on to university. I've worked with kids in these age group and while it can be challenging I really enjoyed it. It's so good that you are making such a positive impact on these students' lives and I'm sure they are thankful for all you do for them when they move on to their young adult lives.
The only way that they can know if I have cancer now is by having a PET scan. When on chemo I have had one every 3 cycles, where a cycle is a month. When the scan has been ‘clear’ it’s 6 months, just because I didn’t want to know! I counted … I’m up to 35 CT scans and 13 PET CT scans.
I teach Chemistry to Year 11 and 12 students. These kids are 17/18 years old, and in their final years of secondary education. I get them ready for university! I’ve taught some great kids, and have many friends who always ask me how I’m going.
I was first diagnosed in 2010 as stage 3c ovarian cancer. Had a radical hysterectomy with debulking and then 6 cycles of carboplatin/ paclitaxol adjuvant chemotherapy. The cancer returned in 2014 and again and again…
I am up to the 8th line of chemotherapy. I am on carboplatin/ Caelyx at the moment. I have had 50 cycles of chemotherapy in total, I have the next in 2 weeks. Another PET CT scan will tell me if I’m done with the chemo, or not! My ca125 has not been higher than 10 for the last 6 years even when I have had cancer.
I’ve always said that every day is a good day, because it’s what God planned for you. There’s no such thing as a bad day. There are definitely hard days, but somehow I have always come out the other end knowing that I have coped, and sometimes even been blessed.
At the moment I’m wondering how much more of this I can cope with, and I’m praying that the scan this time will be clear. The question is also for how long? I keep trusting God for what He has in store for me. I am definitely a miracle, living as long as I have with the disease recurring so many times. My oncologist calls me his Champion! I know I give hope to others, even though my journey has not been a pleasant one. But as I have said, I have also been blessed along the way with successes that I would not have believed possible. My faith in the One True Living God is what keeps me getting out of bed, and teaching high school students every day.
Janelle, thank you for your reply! Question...if your CA125 never went above 10 how do they know when there is active cancer? How often have you had scans? I have my labs checked every three months but they aren't planning to do scans until I reach the one year mark from ending chemo in August. At first they said I'd have scans in six months but then they changed it to a year. My treatment is at Mass General Hospital in Boston so I am pretty confident in their expertise but it does seem that some medical centers do things differently.
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Hi Julie, my heart is with you….it’s so scary and difficult to have OC. So understandable that you feel fed up. Do you know why surgery isn’t an option? I’m hoping they will find an option that will keep the cancer from spreading. ♥️♥️
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3 ReactionsMy name is Julie I've got ovarian cancer was diagnosed 2yr ago stage 4 my oncologist can't operate so I've had 6 rounds of carboplatin and pitaxel,had to go on parp inhibitors which were great olyrib but now theve stopped working,got to have another 6 rounds of carboplatin,I was hoping they would give me another inhibitor but they said can't have anymore,so feeling fed up.
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3 ReactionsI always have a blood test before each treatment. The haemoglobin was a bit lower again, but no need for a blood transfusion. The Mg was last checked in January and it was slightly lower than normal. This time it was very low. He might have asked for it this time because of the symptoms I described to him.
If the scans are not clear on 2nd May, the intention will be three more treatments. If it’s clear, I can stop. I won’t find out for sure until I see the doctor after the scans.
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1 Reaction@jenelleseaman You certainly have an attentive medical team. I'm glad to hear you are done with treatment for awhile. What side effects have you been experiencing and is this why the doctor ordered the magnesium infusion and magnesium tables you will take daily?
I had the next treatment today. Hopefully it will be the last for a little while. I have another PET CT scan in 4 weeks, and then we decide what follows.
My Mg was very low, so along with the carboplatin and Caelyx, I had a magnesium infusion. I also have to take 6 magnesium tablets a day until I see the doctor again. It explains quite a few side effects I’ve been experiencing.
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Helpful -
Hug
2 Reactions@jenelleseaman I can just imagine that you've been a topic in these medical discussions with your original diagnosis. Since you return so frequently (still every 3 months?) to Sydney Adventist Hospital you must know just about everyone in the Integrated Cancer Centre. And they know you.
Yes, I know what you mean about having a passion for a subject matter. The students always know when their teacher loves the subject they are teaching. It sounds like one of those employment opportunities that the salary is almost a bonus because you love it so much. I say "almost" because of course you should be paid well for teaching.
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1 ReactionIn the early days the oncologist would get me to do a CT scan if the ca125 was creeping up in consecutive 3 monthly visits. For example it may have been 6, then 12 and then 20. That was enough to say it was back. I’ve had so many scans because it has been 15 years since I was diagnosed. I have always visited a doctor every 3 months, never been longer than that, even when I have been in remission.
In terms of teaching, I also teach different levels of Mathematics to the 17/18 year old students. I love both Chemistry and Mathematics, but Chemistry is definitely my passion and the whole school knows me for it!
My treatment is at the Sydney Adventist Hospital in Sydney, Australia. There’s an Integrated Cancer Centre there that is where all involved, even some that don’t know me, get together and discuss individual cases. I know I’ve been the subject of discussion quite a few times over the years. I’m very thankful for the care that I have received from everyone there.
@jenelleseaman Wow, that's surely a high count for CT and PET/CT scans. You must be an expert now at lying very still during these scans. It's not pleasant to keep returning for a scan. I get very anxious before my CT scans wondering what they will find.
Somehow when you mentioned that you teach I was envisioning you with very young children. Students in the 17/18 years old range is a whole other experience. How wonderful that you have them in their final year and get them ready to go on to university. I've worked with kids in these age group and while it can be challenging I really enjoyed it. It's so good that you are making such a positive impact on these students' lives and I'm sure they are thankful for all you do for them when they move on to their young adult lives.
The only way that they can know if I have cancer now is by having a PET scan. When on chemo I have had one every 3 cycles, where a cycle is a month. When the scan has been ‘clear’ it’s 6 months, just because I didn’t want to know! I counted … I’m up to 35 CT scans and 13 PET CT scans.
I teach Chemistry to Year 11 and 12 students. These kids are 17/18 years old, and in their final years of secondary education. I get them ready for university! I’ve taught some great kids, and have many friends who always ask me how I’m going.
Janelle, thank you for your reply! Question...if your CA125 never went above 10 how do they know when there is active cancer? How often have you had scans? I have my labs checked every three months but they aren't planning to do scans until I reach the one year mark from ending chemo in August. At first they said I'd have scans in six months but then they changed it to a year. My treatment is at Mass General Hospital in Boston so I am pretty confident in their expertise but it does seem that some medical centers do things differently.
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