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.

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.

Beautiful resort town of Sitges

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.

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.

Aquarium

 St. Lawrence Market

Aquarium

Royal Ontario Museum

Clinical Trial Hopeful

Well I am back on track to enter the clinical trial I described back in October 2014.  Now that the Taxol is less than effective the disease seems to be active and is clearly visible on the CT Scan.  As I mentioned before there is also ascites.  I've already had one paracentesis and they removed 3.25 litres of fluid (Feb 27).  Of course the fluid doesn't not stop building up unless there is some chemo treatment or something.

My appointment this past Monday (Mar 2nd) at Princess Margaret confirmed the active disease and the need to get me into that clinical trial as soon as possible.  I have a date for a biopsy (Mar 17).  This is one of the criteria of the trial and other diagnostics that have to take place before treatment can begin.  So I have a bit of time to nip down to Florida and visit with my Mom and Uncle and Aunt.  Franca is also going and I will be grateful for a bit of warmth and sunshine.
Hopefully I will be starting my trial treatment on March 25th.  It will be a start to a new journey!

Post Chemo

This weekly protocol of Taxol will be easier to handle I think.  During infusion I did not have any reactions but of course the good people at the Grand River Regional Cancer Centre know of my spotty past with chemo reactions and had matters well in hand.  I received a variety of pre meds to ensure nothing would interfere with the chemo.  As usual I mostly slept through it and was released to go home within 3 hours.  This is quick for me.

After chemo I experienced minimal side effects ie. nausea, vomiting, etc.  There was some headache the day after but nothing I can't handle with some medication.  Let's just hope this weekly Taxol does the job it is supposed to!

I am still dealing with the ascites which is really dragging me down.  The fluid in the abdominal is very uncomfortable making it hard for me to walk or stand.  I spend most of my time sitting down to ease the pressure off my back.  This does not help with the fact that I plan to be living in my bathing suit in a few weeks in Mexico.

The good new is that I have an appointment for a paracentesis tomorrow and it cannot come soon enough.

UPDATE:  Today the imaging department called and asked if they could move my appointment up to 3:00 pm.  I said most certainly and thanked them profusely. Appointment went well and they removed 5 litres of fluid.  That's 10 pounds thank you very much........  I am feeling quite tender in the belly and trust it will heal and tighten up very soon.  Maybe not Kim Kardasian tight but hopefully will not remain like a pillow or something.  yuck.....

The November 7th scan is showing stable disease which means the visible disease has not changed significantly since the September 29th scan.  This is good news.  The only problem at this point is the development of ascites.  As usual this fluid accumulated very rapidly.  I know my clothes started to feel tight on November 7th and by the November 17th appointment at Princess Margaret I could not wear my regular clothes.  Elastic waist bands are the fashion of the day.  

At the meeting on November 17th we discussed the CT Scan results which were favourable but we needed to deal with the ascites and talk about start of trial.  Starting the trial right away would help with the ascites but would interfere with our holiday in December.  Once I start the trial I have to adhere to the protocols and appointments which means frequent travel to Toronto.  If we just treat the ascites then I can wait until the new year to begin trial and focus on that.  I chose to wait to start the trial and my best option right now is to start weekly chemo of Taxol for 3 weeks.  The usual protocol is one infusion every 3 weeks so I will be getting a third of the infusion every week for 3 weeks.  You get the picture.  This is a stop gap measure and I should hopefully experience minimal side effects.  The best part is I can have this done at Grand River Cancer Centre and I do not need to travel to Toronto until the new year.

I met with my oncologist at Grand River on the 19th (appointment previously booked) and we discussed the more immediate treatment plan.  She is in agreement and started the ball rolling to get the chemo scheduled this week.  We discussed potential issues such as low blood counts and maybe some hair loss.  We will deal with issues as they come up.  She also wants to schedule a paracentesis.  A paracentesis will be a relief I can tell you!  I look about 7 months pregnant and it is not very comfortable.  Walking any distance is physically taxing.

So far my chemo is scheduled for this Friday on the 21st.  Still waiting to hear about the paracentesis.  Hoping it might be today!

We are getting dumped on with snow and it is cold.........