This is David Knight, Olga's husband.
In early August, Olga composed a blog entry but didn't post it. In the draft post, she talked about stopping the Lynparza treatment which wasn't working. At the time, she was constantly extremely fatigued. Her draft post also mentions that she would rest for a couple of weeks before deciding on further treatment.
As it turned out, with Olga's condition, no further treatment was available for Olga. Olga spent a couple of weeks in hospital until approximately September 9. She arrived home in palliative care. PSWs and nurses cared for her daily. Olga's quality of life rapidly deteriorated. Those close to her, knew her passing would happen soon.
Olga passed away at 10:30 am on Friday October 7, 2016.
I know many people regularly checked her blog. I wanted to post this note in closure.
Tuesday, October 18, 2016
Monday, July 18, 2016
Blood Transfusion
My 2 week visit at PMH on July 12th resulted in another paracentesis where they removed 4.8 litres. The clinic visit then had to inform me that my blood work came back with low hemoglobin counts. This is the first time I have had this happen but it is a side effect of Olaparib/Lynparza. I know I was feeling fairly fatigued and sleepy but I had no idea. So a blood transfusion was ordered and 2 days later I was back at PMH getting 2 units of red blood cells pumped into me. Immediately afterwards I felt much better and was even able to walk a little faster than usual. Now several days later I feel fatigued again and wonder if it is the blood or just the side effects of the pills. I hope this resolves itself soon.
Sunday, July 3, 2016
Continuing the Journey with Olaparib
It has now been one month since taking Olaparib. 16 pills per day for 30 days. Morning and night. Thank goodness for alarms on phones. Before I take Olaparib I take another pill one hour before in preparation. Then after the Olaparib I must wait 2 more hours to take some other pills I was taking before. So many pills. In my former like (before cancer), I did not take any pills except for vitamins which I still take.
I have not had many side effects from this medication. I have some fatigue from time to time but it is pretty minor. Whether this treatment is working or not will not be known until after a CT Scan scheduled for July 25th.
My main issue is with ascites which has not subsided. I have had 2 more paracentesis since my last blog entry where they drained off 4 litres of fluid each time. That is 8 pounds that I was carrying around. My clothes do not fit properly and it is just damn uncomfortable. Instead of going to Toronto once per month for a check in I need to go every 2 weeks so they can keep tabs on the ascites. I hope these pill are doing the job as intended and that the ascites subsides. Makes it quite difficult to plan a wardrobe that does not include waistless garments.......
Enough of my whining...... A close acquaintance is in Toronto who is close to the end of life. She has suffered with Ovarian Cancer for the past 4 or 5 years. A Canadian living in Spain, this past winter she decided to come back to Ontario for continued treatment at Princess Margaret. Unfortunately, she developed an obstruction in the small intestine and has been mostly in hospital for this. She has been on TPN with no food or fluids by mouth.
We met through mutual friends and family while in Barcelona a couple of years ago. She was healthier and vibrant at that time. She took time out of her schedule and showed us some of the sights which we will forever remember. I wish I could have known her better but life waits for no one and we must do our living while we can.
I have not had many side effects from this medication. I have some fatigue from time to time but it is pretty minor. Whether this treatment is working or not will not be known until after a CT Scan scheduled for July 25th.
My main issue is with ascites which has not subsided. I have had 2 more paracentesis since my last blog entry where they drained off 4 litres of fluid each time. That is 8 pounds that I was carrying around. My clothes do not fit properly and it is just damn uncomfortable. Instead of going to Toronto once per month for a check in I need to go every 2 weeks so they can keep tabs on the ascites. I hope these pill are doing the job as intended and that the ascites subsides. Makes it quite difficult to plan a wardrobe that does not include waistless garments.......
Enough of my whining...... A close acquaintance is in Toronto who is close to the end of life. She has suffered with Ovarian Cancer for the past 4 or 5 years. A Canadian living in Spain, this past winter she decided to come back to Ontario for continued treatment at Princess Margaret. Unfortunately, she developed an obstruction in the small intestine and has been mostly in hospital for this. She has been on TPN with no food or fluids by mouth.
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| Beautiful resort town of Sitges |
Wednesday, June 1, 2016
Olaparib or Lynparza is here
The long awaited approval for Olaparib has been received and I am now in possession of a month's worth. I have already taken 2 doses and have not felt any side effects. Yay!
On May 3rd, Health Canada has provided a limited approval for Olaparib for the treatment of Ovarian Cancer for people with certain criteria. I believe full approval is pending further evidence of its efficacy. You can read the news release. I don't quite fall into the appropriate criteria but that is ok since AstraZeneca has supplied me with the capsules under the Managed Care Access Program.
Since my last post I have been placed on a low fibre diet. Yup you heard right. You never hear of this except I hear it most often with other Ovarian Cancer patients. The objective here is to avoid any bowel obstruction at all costs. So the foods recommended are the ones with little fibre so as not to irritate the bowel as it passes. No raw vegetables and the ones I can eat must be cooked thoroughly. Some fruit is allowed but very ripe and no skins. No whole grains, no nuts, seeds, etc. OK. Enough about that.......
Also since my last post I had a paracentesis which removed about 3.25 litres of fluid from my abdomen. To say I was uncomfortable is an understatement. Hopefully with the Olaparib I will not need another tapping for a long while.
On May 3rd, Health Canada has provided a limited approval for Olaparib for the treatment of Ovarian Cancer for people with certain criteria. I believe full approval is pending further evidence of its efficacy. You can read the news release. I don't quite fall into the appropriate criteria but that is ok since AstraZeneca has supplied me with the capsules under the Managed Care Access Program.
Since my last post I have been placed on a low fibre diet. Yup you heard right. You never hear of this except I hear it most often with other Ovarian Cancer patients. The objective here is to avoid any bowel obstruction at all costs. So the foods recommended are the ones with little fibre so as not to irritate the bowel as it passes. No raw vegetables and the ones I can eat must be cooked thoroughly. Some fruit is allowed but very ripe and no skins. No whole grains, no nuts, seeds, etc. OK. Enough about that.......
Also since my last post I had a paracentesis which removed about 3.25 litres of fluid from my abdomen. To say I was uncomfortable is an understatement. Hopefully with the Olaparib I will not need another tapping for a long while.
Sunday, April 24, 2016
There is Nothing Permanent Except Change.
This past week I received the results of my April 5th CT Scan. The lesion they follow for the purposes of the clinical trial is still showing no progression which is good news but the scan also shows evidence of ascites build up. It is not so much but 5 days later I can definitely feel it and it is uncomfortable. Also my CA 125 has been on the rise for the last few months. It is now 219 as of April 19th from a record low of 13 on August 15, 2015. The upswing in values has rapidly increased since February. In other words it is now rising quickly. All this evidence is pointing to the fact that treatment from this clinical trial is not as effective as it has been in the past. I can't complain though. I have had a good long run. One year actually. That is the longest any treatment has kept the beast down.
The good folks at Princess Margaret are lining up the next line of defence. We have applied to AstraZeneca to their Managed Access Program for Olaparib which is something called a PARP inhibitor. PARP inhibitors can destroy cancer cells that have abnormal BRCA genes, but do not destroy normal cells. I have the BRCA2 mutation.
Olaparib has not been approved by Health Canada but it has been in the U.S. by the FDA. This access is provided internationally for those countries where it is not yet approved. Once approved it will be available via prescription, however, I understand that it is very expensive and many drug plans may not pay for it.
This approval for Managed Access may take a month or so and then I will be part of a new study. In the meantime I am continuing on the trial because of the good results of the scan although the ascites is building up. This is something we can deal with although I never feel it is frequent enough. Most hospitals will not perform a paracentesis unless there is a considerable amount of fluid to drain.
Once it is deemed that disease progression is occurring then I will switch over to Olaparib treatment which consists of taking about 16 capsules a day and monthly clinic visits. Much better than going to Toronto for weekly chemo treatment........
A couple of weeks ago my daughter and I went to Toronto for a few days to be tourists. We had a good time and had some good quality time together.
St. Lawrence Market
The good folks at Princess Margaret are lining up the next line of defence. We have applied to AstraZeneca to their Managed Access Program for Olaparib which is something called a PARP inhibitor. PARP inhibitors can destroy cancer cells that have abnormal BRCA genes, but do not destroy normal cells. I have the BRCA2 mutation.
Olaparib has not been approved by Health Canada but it has been in the U.S. by the FDA. This access is provided internationally for those countries where it is not yet approved. Once approved it will be available via prescription, however, I understand that it is very expensive and many drug plans may not pay for it.
This approval for Managed Access may take a month or so and then I will be part of a new study. In the meantime I am continuing on the trial because of the good results of the scan although the ascites is building up. This is something we can deal with although I never feel it is frequent enough. Most hospitals will not perform a paracentesis unless there is a considerable amount of fluid to drain.
Once it is deemed that disease progression is occurring then I will switch over to Olaparib treatment which consists of taking about 16 capsules a day and monthly clinic visits. Much better than going to Toronto for weekly chemo treatment........
A couple of weeks ago my daughter and I went to Toronto for a few days to be tourists. We had a good time and had some good quality time together.
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| Aquarium |
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| Aquarium |
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| Royal Ontario Museum |
Thursday, February 25, 2016
Another good scan
My life has taken on this rhythm: 1 treatment per week for 3 weeks then one week off and then 3 more treatments then a CT Scan. And another week off. Cycle starts over as long as CT Scan shows stable disease. This means not more then 20 % increase in visible disease and a bunch of other criteria that is studied by the technologist and the reasearch team at PMH. Most of my disease locations are about 1.3 cm to 2.5 cm. Also there is sprinkling of small spots within the peritoneum. These are not measurable but exist as is typical with ovarian cancer.
There is also the CA 125 tumour marker measurement that is taken once a month. This measurement has been creeping up the last several months but taken on its own merit is not 100% foolproof. Current reading is up to 88. It is also a test that is considered along with the CT Scans, my physical examinations and my verbal account of my general well being. Nothing is simple.
My scans of December 21st, 2015 and February 9th, 2016 were both good and progression of disease is classed as 'no progression'. This is very good news and although I continue to worry I try not to think about it and look forward to my one week off when I do not have treatment and do not have to travel to Toronto! I can't believe I have just started cycle 13. It is almost a year of treatment on this clinical trial.
On the weeks of treatment my week is up and down in terms of my reaction to chemo and trial drug. Wednesday and Thursday I am fairly wired and can do all the things I need to do around the house in terms of meals, laundry, cleaning, etc. Those mornings I can get up @ 4:00 am and enjoy some tea while the house sleeps. I try and get back to bed by 6:00 am to get some much needed sleep but sometimes it is impossible. This is all the effect of dexamethasone which is a type of steroid. By Friday I seem to crash and that day is ususally a down day. A day to catch up on my shows that I have been recording.
One appointment that I went to in January was to the 'Pain and Sympton Management' department or 'Palliative Care' a name they don't like to use with someone like me who is still high functioning while managing through cancer. ( I don't like to say fighting cancer.) They are there to ensure cancer patients have the best quality of life. And they are also there for the loved ones. They are team which includes doctors, nurses, occupational therapists, physiotherapists, pharmacists, psychiatrists, social workers, spriritual care provider, and volunteers.
For me we discussed my current challenges with some discomforts and the doctor adjusted some of my meds and prescribed some others. We also discussed the merits of medical marijuana which is a part of their therapies. These substances, which are also available in pill form without the highs, are most suited for patients with nausea, vomiting and chronic pain. Luckily for me these are not major concerns for me and I take other good meds for these right now. I next see them in April.
So I am very happy to be under their care as well are my primary medical team which are more focussed on my physical self, side effects and my emotional well being as a result of the clinical trial. They are there to to help me deal with the cancer itself and how we manage through the disease with appropriate treatments.
There is also the CA 125 tumour marker measurement that is taken once a month. This measurement has been creeping up the last several months but taken on its own merit is not 100% foolproof. Current reading is up to 88. It is also a test that is considered along with the CT Scans, my physical examinations and my verbal account of my general well being. Nothing is simple.
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| Angel knows how to relax...... |
My scans of December 21st, 2015 and February 9th, 2016 were both good and progression of disease is classed as 'no progression'. This is very good news and although I continue to worry I try not to think about it and look forward to my one week off when I do not have treatment and do not have to travel to Toronto! I can't believe I have just started cycle 13. It is almost a year of treatment on this clinical trial.
On the weeks of treatment my week is up and down in terms of my reaction to chemo and trial drug. Wednesday and Thursday I am fairly wired and can do all the things I need to do around the house in terms of meals, laundry, cleaning, etc. Those mornings I can get up @ 4:00 am and enjoy some tea while the house sleeps. I try and get back to bed by 6:00 am to get some much needed sleep but sometimes it is impossible. This is all the effect of dexamethasone which is a type of steroid. By Friday I seem to crash and that day is ususally a down day. A day to catch up on my shows that I have been recording.
One appointment that I went to in January was to the 'Pain and Sympton Management' department or 'Palliative Care' a name they don't like to use with someone like me who is still high functioning while managing through cancer. ( I don't like to say fighting cancer.) They are there to ensure cancer patients have the best quality of life. And they are also there for the loved ones. They are team which includes doctors, nurses, occupational therapists, physiotherapists, pharmacists, psychiatrists, social workers, spriritual care provider, and volunteers.
For me we discussed my current challenges with some discomforts and the doctor adjusted some of my meds and prescribed some others. We also discussed the merits of medical marijuana which is a part of their therapies. These substances, which are also available in pill form without the highs, are most suited for patients with nausea, vomiting and chronic pain. Luckily for me these are not major concerns for me and I take other good meds for these right now. I next see them in April.
So I am very happy to be under their care as well are my primary medical team which are more focussed on my physical self, side effects and my emotional well being as a result of the clinical trial. They are there to to help me deal with the cancer itself and how we manage through the disease with appropriate treatments.
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| Our 11 year old Cyrus! |
Friday, December 18, 2015
Current Scan Results
CT Scans are required as part of this trial every couple of months. The progression of disease is closely monitored which in of itself causes some anxiety on my part, as you can imagine. I mostly forget during this 2 month period that there is a test at the end and if the disease locations start to increase in size then there is a good chance I will be taken off trial.
My most current scan was October 27th. Of course it was my week off from treatment and I had to schelp myself to Toronto for a 7:15 pm scan. This is how they get scheduled and I have to adhere to the schedule as best I can. I am grateful for the good old Greyhound bus to get me there stress free!
Thankfully that scan showed stable disease which meant I could continue with the trial and begin cycle 10. This is the treatment that has given me the most benefit for the longest period of time. All the side effects are worth it!
In November, David and it went to Mexico for a few days. We stayed on Isla Mujeres at the same studio apartment as last year. This apartment faces the Carribean Sea which is pretty rough. No swimming here but you can sit and stare at the water all day. It was a glorious and relaxing time!
At the beginning of December I experienced more than usual fatigue several days after treatment. I was in fact sick in bed for a day. My head was especially painful. At my next treatment appointment they sent me for a MRI on my head. Luckily they found nothing but I could have told them that! My doctors suspect I had a virus which is common this time of year. Good hygiene and hand washing keeps the germs away but sometimes you just get sick.
Now it is time again for another scan on Monday, December 21st @ 9:45 am. A more convenient time! Even though I feel pretty well most of the time there is always that nagging voice in my head. It is a challenge to silence that voice and distract myself. Naturally with the Christmas season there is plenty to do even though we have cut down on some activities and social events which we might host. We do have family coming on the 27th and everyone is helping out which is a blessing for me!
I am especially looking forward to seeing my sister and her husband this Christmas. They are driving up from NYC on December 21st. This will be a great Christmas!
My most current scan was October 27th. Of course it was my week off from treatment and I had to schelp myself to Toronto for a 7:15 pm scan. This is how they get scheduled and I have to adhere to the schedule as best I can. I am grateful for the good old Greyhound bus to get me there stress free!
Thankfully that scan showed stable disease which meant I could continue with the trial and begin cycle 10. This is the treatment that has given me the most benefit for the longest period of time. All the side effects are worth it!
In November, David and it went to Mexico for a few days. We stayed on Isla Mujeres at the same studio apartment as last year. This apartment faces the Carribean Sea which is pretty rough. No swimming here but you can sit and stare at the water all day. It was a glorious and relaxing time!
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| Our Balcony |
At the beginning of December I experienced more than usual fatigue several days after treatment. I was in fact sick in bed for a day. My head was especially painful. At my next treatment appointment they sent me for a MRI on my head. Luckily they found nothing but I could have told them that! My doctors suspect I had a virus which is common this time of year. Good hygiene and hand washing keeps the germs away but sometimes you just get sick.
Now it is time again for another scan on Monday, December 21st @ 9:45 am. A more convenient time! Even though I feel pretty well most of the time there is always that nagging voice in my head. It is a challenge to silence that voice and distract myself. Naturally with the Christmas season there is plenty to do even though we have cut down on some activities and social events which we might host. We do have family coming on the 27th and everyone is helping out which is a blessing for me!
I am especially looking forward to seeing my sister and her husband this Christmas. They are driving up from NYC on December 21st. This will be a great Christmas!
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