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.

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.

Our 11 year old Cyrus!

First Trial Treatment - Yikes

The thing with drug trials is that everything must be done in a timely and methodical way.  There is a schedule to follow and deviations should be minimal.  All parameters must be consistent or at least as consistent as possible.  And this is where it all falls apart.  We are humans and sometimes it is difficult to be consistent.  At least that is my take.  More on this later.......

My first trial treatment was Tuesday March 24th.  The treatment consists of a chemo drug (Gemcitabine) administered via IV and a mystery drug administered orally.  These drugs must be delivered together and the trial drug again within 24 hours.  Before treatment began blood sample was taken and an hour after treatment began another blood sample was taken.  After this blood samples were taken at prescribed intervals until I finished up 8 hours later.  Total chemo infusion time was only about 2 hours from start to finish but I had to wait around for the blood samples.  The very next day I had to take more of mystery drug and then 4 more blood samples were taken on a similar schedule and then I could go home.  This regiment of blood sampling is only for the 1st treatment and I believe at a later date.

The week before I started this trial I battled a cold with a mild dry cough.  Nothing major but 2 days after treatment I was in a bad way.  Fever, nausea, vomiting, diarrhea, and general flu like condition.  Into hospital I go and spend the next 4 days on antibiotics, pain killers, potassium and for a couple of days in isolation.  Not a great start to a trial.  On day 2 of hospital stay I develop a nasty rash on my lower extremities.  Another kick in the head.  Rash is hot and itchy.  So Benedryl comes into the picture.

After all this I have to get back down to Princess Margaret for 2nd treatment on March 31st.  I still have nasty rash but fever is non existent and I am feeling a little better but still kind of beat up.  They take one look at me and my bloodwork and determine I am in no shape for treatment so off I go home to recover from whatever all this was.  And that is the kicker.  No one seems to know what the cause is.  So many things are present:  new chemo treatment, new trial drug (or not), underlying cold and cough, flu bug...... who knows but it just knocked me down.

This past week (April 7th) I had my next treatment.  It is not considered number 2 but number 3 as per the schedule.  No make up treatment here.  This is the adherence to the schedule I spoke of above.  No matter.  Onward and upward.  The good researchers at PMH decided to cut back on my dosages to avoid the extreme reactions I had.  They are not really sure but this is the best option for now.  In addition I have another Skin biopsy and Tumour biopsy taken on April 9th.  I figure all hell is going to break loose again with all the activity but I am coming through it pretty well.  A little help with good meds doesn't hurt either.  I felt a some flu like symptoms yesterday and am still a little weak today but I can do things slowly but surely around the house.

And the best thing......the ascites seems to have calmed down.  I hope this treatment keeps it under control for awhile.  Nothing sucks as much as not having your clothes fit.....

The weather is finally starting to warm up.  It has been a long and hard winter.  All of our snow is finally gone!

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!

Solo2 Clinical Trial

Princess Margaret Cancer Centre is a busy place.  I had to wait an hour to get my bloodwork done and then found out I was in the wrong place.  I have a port-a-cath and should have gone to Ambulatory Care for blood work.  Next time.

My appointment was for 10:30 but did not see doctor until 12:30 pm.  They are quite busy seeing the multitudes.  We left Princess Margaret at 2:30 pm.  We were there a full 5 and 1/2 hours.  I hope you never have to see an oncologist or the inside of a cancer centre.  Chances are you will because as people live longer their cells go haywire and cancer develops.

This was considered a first meeting and after discussing my medical situation the doctor seemed to think that I may be a suitable candidate for the Solo2 clinical trial.  This was not before he had to leave several times to confer with various researchers.  Seems most of my ducks are getting in order:  recurrent ovarian cancer, favourable response to a platinum drug (Cisplatin), BRCA2 carrier (they need to still see my genetic report from 2011), and CT Scans show some visible evidence of disease (they will have to verify this more).

They also decided I should finish up with my chemo treatments.  Usually a course of chemo is 6 infusions.  I have 2 more to go.  The study requires patients to begin the trial within 8 weeks of chemo ending.  Therefore, my last chemo should be the week of September 22nd and if accepted into trial I would begin no later than week of November 17th.  That is according to my calculations.

The drug they are testing is Olaparib.  As I stated in a previous post it is a drug that inhibits a cancer cell from repairing itself.  It is considered a maintenance drug which keeps the cancer from growing so that it lengthens the period of 'remission'.  That is what we are always trying to achieve although technically I have not been in remission since 2011.

Solo2 is a phase III trial and they are recruiting 264 people all over the world.  Because the researchers have not yet decided whether I qualify they wanted me to get registered in case the study closes between now and November.  If the study closes then I can still participate.  Of course they still have to definitively accept me into the study and I have to consent.  I was given a 23 page Study Information and Consent Form to read.  It is quite extensive in introducing the study, its purpose, a thorough explanation regarding its experimental status, charts explaining how often I need to visit hospital for tests and follow ups, all the potential side effects, my responsibilities as a participant, confidentiality, risks, etc.  I can drop out of study at any time.

On the one hand I hope to be accepted into this trial.  It is cutting edge science and could help me to attain some degree of remission.  Cost is picked up by drug company (AstraZeneca).  This study, if successful, could provide oncologists with another tool for maintenance treatment in future ovarian cancer cases.  On the other hand it is experimental.  Long term side effects are unknown.  Side effects while on drug could be unpleasant but maybe not.  At least with chemo my experience is a week of unpleasantness and a couple of weeks of normalcy of sorts.  And I could end up in the placebo group and get no benefit at all.  I still have several questions I want to ask of my assigned trial nurse and I have some time to fully consider this trial.

Don't Rain on my Parade.....

Things are happening again...........I was right as rain up until a couple of weeks ago.  It began with the bowels.  Why does it have to involve bowels?

So while attempting to inspire regularity I noticed my abdomen getting a bit bigger.  This was alarmingly noted when I tried on a straight skirt which I had made about a month ago.  I could barely get the zipper up.  Within days I had called the hospital and they arranged for an ultrasound.  They and I suspected that the dreaded ascites was back.  If you check out this link do not be alarmed by this picture.  I look nothing like that!  In any case can I tell you how bummed out this makes me feel?

Yes I stopped treatment in February because the chemo drug was not effective for me anymore.  But I had hopes that I could get through the summer without chemo.  To be able to enjoy a glass of wine with dinner would have been ultimate.  (little things make me happy.....)

Alas, I will be admitted into hospital on Monday for parensentesis and a chemo treatment.  The drug they are going to use is Cisplatin.  A platinum drug.  I believe Cisplatin was used in the days before Carboplatin and is still in wide use.  Because I react severely to Carboplatin I have to be admitted to hospital so personnel can monitor my potential reaction under a hyper-sensitivity protocol.  Best to be safe than sorry....

You may be wondering why on earth they would give me another platinum drug when I reacted to the other.  Platinum drugs are the best for ovarian cancer.  They seem to knock it down quite effectively but allergic reactions may occur like it does for me.  Also, the team at Princess Margaret suggested Cisplatin to my oncologist in order to determine whether I am 'platinum sensitive' or 'platinum resistant' after a series of infusions.  This was all explained in my post of April 17, 2014.  The ultimate goal is to get into a clinical trial with a parp inhibitor.  I have to qualify and this is the way.

My CA 125 is not good either.  My current reading is 597 and this is alarming.  I was at a low of 113 last December.  I knew it was rising but not this much.  I really need this chemo now.  The parensentesis and the chemo will take care of the ascites.

Oh and by the way ...... did I tell you we are leaving on a 3 week holiday in France and Spain?  In one week.  This was booked back in January after my Dad died and my Mom is coming with us.  At that time I was doing really well on Doxil and I had hoped I would be in good shape for June.  We are definitely going.  I just maybe not a bright as usual and I will have some good drugs to help me along!