Treatment Updates

February 12^th, 2010 – Round 2.7 Completed – Making our way to the finish line

Well it’s official – I have done more chemo than I have left to do.  Finished my 7^th cycle on Monday February 8^th.  Dose was another 5 mg less because I lost a couple more lbs, which meant I got two red pills and one bright green pill to take – told the pharmacist it was like Christmas.   The MRI scans that I did on January 19^th came back clear which is good.  Blood work was all right, although my Red Blood Cells (RBC)/platelets took a bit of a hit.  My ND has reminded me the importance of my B12 supplementation and I am going to start back on Folic Acid and we will see if that helps for next month.  RBC really impact your energy levels, so I was not surprised to see the low results, considering when they took the blood I was almost falling asleep.   I have been noticing that I am more fatigued lately so I will add a little more red meat and be more conscientious of the supplementation.  I will continue to monitor my Energy levels and see what happens.

This round of chemo had a little more “excitement”.  I am not one who likes routine so even though things have been moving along well, I thought maybe we could do some more refining.  At my last appointment I asked the doctor whether we could lower my dose of anti-nausea to help alleviate some of my constipation issues.  We discussed how I was feeling and she recommended that I try taking the lower dose anti nausea I took with my lower dose chemo during radiation – it’s called Prochlorazine – rather than taking the higher dose Sofran.  The Prochlorazine I only have to take as needed.  She said it works for some people.

So Thursday night, I took my chemo pills with no anti-nausea and went to sleep.  Friday morning around 1:30 am I woke up feeling not so good.    So I took a Prochlorazine and then started the kettle to steep some raw ginger which typically settles my stomach.  I had barely poured the water when I was running to the bathroom.  I was in the bathroom every 10 – 15 minutes or so for the next 4.5 hours.  To make matters worse, we had friends up visiting and we had decided to go out for dinner that evening before chemo.  We chose Indian Food.  As I lay on the floor at about 3:30 am I started thinking about what I learned from this experience

1. If it ain’t broke don’t fix it  – meaning I was doing fine, no need to refine
2. When given the choice between constipation and nausea/vomiting, I choose constipation hands down.
3. If going to play with your anti nausea, do not choose Indian Food as your last meal

I went back to the Sofran on Friday night with much better results.   I ended up cutting the Sofran in half to reduce my dose on Saturday – Monday, which also seemed to work well and there was no more vomiting.   My constipation was not nearly as bad as it has been in previous cycles.  I had started a new homeopath that helps relieve constipation as a secondary benefit and did increase my fibre leading up to chemo which also helped.  Additionally a friend, Martha, sent me some tips from a friend who had gone through something similar who recommended a cup of coffee first thing in the morning and adding some fat to your diet which I also tried.

Interestingly my ND had seen some research that looked at the effects of spiking insulin levels in rats on the effectiveness of chemo.  The rats that had elevated insulin and chemo all lived, whereas those rats that just had chemo died.  My ND indicated that there are some ND in Canada doing insulin injections with cancer patients, however he felt the research was too new and that injections were too risky for him to do them yet, however he is recommending to his patients on chemo that they have a Coke or cookie as close to their chemo as possible.   I laughed, and said “Are you really prescribing white sugar.”  He smiled and said “Unfortunately I am”.   Our friends who were visiting us went to Crave Cupcakes and bought me some mini – cupcakes to help improve the effectiveness of my chemo J

This update is a little late, as the last 3 days after chemo have still been tough.  Very strong nausea and a little vomiting.  Even though I was done chemo I still took another dose of Sofran because the Prochlorazine wasn’t working at all.  However I am not sure if this fatigue and nausea was residual from the chemo or if it was something I did accidentally, namely ate a couple of mouldy muffins.  I had made some muffins the week earlier and on Tuesday was feeling particularly tired.  In the afternoon I realized I hadn’t eaten much and wasn’t feeling up to cooking, so I grabbed a couple muffins.  Ate them in bed, went to sleep.  A few hours later Jared came home, went for a muffin and went Ewwwww.  I asked what was up, he told me the muffins were mouldy.  I said, great I just ate two of them.   So the nausea/vomiting and fatigue the last couple days might be more from that poor eating choice not the chemo.  I know the next time that those muffins need to be kept in the fridge.

So a little more activity, albeit activity that I probably could and should have avoided.   Live and learn.  Next appointment is March 2^nd and next round of chemo scheduled to start on March 4^th.  No MRIs scheduled for this month.

Next update will occur by March 14^th.

January 14^th, 2010 – Round 2.6 Finished – We have hit the turnaround mark

I have completed 6 months of the higher dose chemo and things are pretty routine with my treatment.  Blood work once again improved in terms of my White Blood Counts and everything else my doctors told me “is perfect” whatever that means.   I haven’t had a chance to take the results to Dr Matt (my ND) but I expect that there won’t be anything new we will look at.    My dose went down a little as I continue to lose some weight to 370 mg – so I don’t take a blue pill anymore.   But outside of that, really there is no change since last month.

In terms of side effects, fatigue continues during the chemo.  I keep trying to fight through it and inevitably that makes it worse.   The Tuesday-Thursday right after I finish seem to be the worse as my body tries to re-regulate it’s systems.   Constipation continued to be an issue and it affects my appetite, which affects my energy level.   Now that I am pretty comfortable with the routine, I just need to readjust my expectations especially for the Monday – Thursday of the chemo cycle.  I will work on that in February.

Big goals for 2010 is to try and get into a more consistent routine of exercise, nutrition and balancing other activities like writing for the website and volunteering.  Of course that routine got all out of whack this week thus prompting me to change my expectation for February.    I have started volunteering again back with Stampede and working on some projects with the Alberta Cancer Foundation.   As well I have a few speaking opportunities coming forward that I am anxiously looking forward to.   All the involvements are definitely keeping me busy but is also keeping me flexible to adjust should my energy levels dictate I need a break.

I go for another MRI scan on January 19^th – that will make 6 MRIs since May 2009 – I am definitely getting my monies worth out the Health Care System.  Good thing I am not claustrophobic.

My next round of chemo begins February 4^th 2010, and at my appointment on the 4^th I will get the results of my scan.  I expect nothing but continued positive results.

December 8^th, 2009 – Round 2.5 Complete – Scans Clear, Blood Test improves

Well 5 down, 7 to go and things are moving along pretty well.  Last week I got the results of my latest round of MRIs that I had done on November 26^th.  It was my 5^th MRI that I have had this year.  The person checking me in asked “Have you had an MRI before” as she handed me the form – I replied “Yep, Lots.” And she grimaced and said “Oh, I am sorry, that is unfortunate.”   It reminded me that MRIs aren’t routine for many people.

The good news is that the MRIs continue to show no new cancer.  This time at my appointment they actually showed me my scans and took me back to just post surgery and it looks like everything is healing up nicely – well that is what they told me.  To be honest I really didn’t know what I was looking at and the doctor was a little hard to understand.  Although I was interested, really all I was interested in was his comment that “Your scans look great.”  That’s all I need to hear.

My blood work bounced back up – both in my White Blood Cell count and my Vitamin D levels which is great.  Seems like the supplementation is working, although I know you can never draw a direct cause and effect.  However what I do know is that I was consistent with my Helixor shots and blood work was good.  Then in October I was not so consistent and my blood work dropped.  Then in November I got consistent again and guess what, blood work bounced back up.  I don’t need a double blind test to motivate me that I should stick with the regime.

This does of chemo stayed at the same dose as November – 375 mg.  Nothing much new to report.   I started new supplements to proactively assist with my constipation issues – adding a stool softener I started 3 days before I started the anti-nausea and then also picked up some herbal laxative tea.  However I think I slightly overdid and Saturday, well it wasn’t a fun day.  Sunday I backed right off and my old problems came right back.   Hopefully in January I will be able to find some middle ground.

Fatigue hit me pretty hard Sunday – Tuesday.   Ended up cancelling some plans because I needed to take a nap.   Appetite is a better and nausea seems to be a bit less so that is good, I guess.   All in all, the same old routine – 5 down 7  to go.

I get a bonus week off because of the holidays – so I will be starting my next round January 7^th, 2010.

November 17^th, 2009 – Allergy Testing and a poor Blood Test

Just came back from seeing Dr Matt and got some great advice, as usual.  This was the first time that we had a chance to review my last round of blood work.  I took a bit of a hit in my White Blood Cell counts, as well as some other haemoglobin, calcium, Vitamin D and somewhat low results that relate to liver function.   Nothing to get stressed about but it was good opportunity to review my current nutrition and supplement plan and make some adjustments.  I admitted that I hadn’t been keeping up with my Helixor shots nor was I consistent with my Vitamin D supplementation and that I would be more consistent with those.   He also offered a B12 supplementation that should help with some of my counts as well as a homeopathic remedy that should assist with my fatigue issues.   He had some more ideas but didn’t want to overwhelm me with supplementation, so we started with these first.

I also got the results of some food allergy testing we did.  My mom has celiac disease which is a severe allergy to most bread products and since it was hereditary I was concerned I was going to have similar allergies.  Not that we eat a lot of bread products, but I really like rolls, baguette or a nice piece of cake every now and then.   The good news is that not only do I not have severe allergies to bread, I really don’t have severe allergies to anything.  They tested a bunch of different foods and measure it on a scale of 0 – 6, 0 being no reaction and 6 being extreme reaction.  My highest reaction was a low 4 to egg whites and egg yolks.  I have some low to moderate sensitivity to gluten and whole wheat, asparagus and bananas but I can still eat them, just not all the time.  Oh yeah, I also have a moderate sensitivity to Lima Beans, so crap I guess I have to cut those out too J  Dr Matt was really surprised that my digestive was working so well and said that I was one of only about 5 tests he had ever seen that didn’t come back with high or extreme allergies.   I asked him if I could put the test up on the fridge.  He said that I could and said he would give me a sticker if he wasn’t all out.

I am going for blood work on November 26^th, as well as an MRI.  On December 1^st I have my next appointment with my oncologist and Round 5 starts on December 3^rd.

November 10^th, 2009 – Round 2.4 Complete

I am a third of the way done with chemo which is great.   It’s getting a bit more routine and the last 5 days have really been same old, same old.  My dose was slightly lower than last month.  Instead of two large blue pills and a little pink pill at 380 mg, I took 1 large white pill, one green, one orange and one pink.  So just like my nutritionist wants me to eat a rainbow of colours in my fruits and veggies, my oncologist also has me on a rainbow of chemo J

The different colours actually represent different dosages.  I dropped from 380 mg to 375 mg.  When I inquired about the reduction to the pharmacist I had one of those a-ha moments, when she replied “You probably lost a little weight.” And I thought – right of course my chemo dose would be correlated to their size.    Before that moment I had naively assumed that everyone no matter how old or how big was taking 2 blue and one pink pill.  The things you learn.

Some people have asked about the Temodol pills I take, they are really small. The large pills are about the size of an average capsule vitamin and then the smaller pills are about half the size.   No horse pills and really easy to take.

I have lost some weight – about 20 lbs since July/August.  I am pretty happy that I no longer have the moon face and am no longer swollen from the steroid.   The exercise and nutrition focus is paying off and I am finally getting towards a healthy weight that I had been working towards, well,  my entire adult life really.   What is great about my focus now though is that it’s not about the weight but about my health so I am more focused on getting exercise everyday as well eating well to fight off cancer.  The drop on the scale is just an added bonus.

Constipation eased up a little bit.  I had a lot of people give me some great advice out of the last post and I definitely used it.  Thanks.  My only new symptom is that fatigue is starting to play a bigger role in my day to day.  I went to a fatigue session yesterday and they talked about fatigue related to surgery, radiation, and chemo.  The nurse indicated that in all of these there may be a 1 – 3 month delay in when the onset of fatigue sets in.   She also said that people who have all three procedures, sometimes have to deal with the compound effect of that delay.  That made some sense to me and helped me understand why I haven’t really felt fatigue until this past month.  It is still hard to allow myself to be “tired” and to ease off on workouts or other activities without feeling lazy.  Self-compassion and getting used to taking some rests in the afternoon will be a new challenge for me to practice.  Luckily the Tom Baker Cancer Centre has lots of resources that I can access for assistance.

I haven’t had a chance to get my hiney shot (H1N1) yet.  I wasn’t sure if I was suppose to get it because I was on active treatment and unfortunately the day I found out I should get the shot, was also the day Alberta closed the clinics.  So I am waiting for the high risk clinics to be expanded to adults and then I will head out to vaccinate my hiney.

My next round is scheduled for December 3^rd – 8^th.  I have another set of scans on November 26^th.  Main focus for the next few weeks is working on keeping my WBC up while staying away from the flu, increased Vitamin D supplementation to help me through the darkness of Calgary winters and continued work on managing my fatigue through diet, exercise and rest.

Next Round of Chemo is scheduled December 3^rd – 8^th – update on Round 5 will come mid December.

October 22^nd – Today I am a Pin Cushion

Just got back from my Naturopath , Dr Matt Pyatt,  and we both agreed, today  I was a pin cushion.   We started with some acupuncture.   I have only had two treatments and we have started doing this to help me with some constipation issues I had during my last cycle of chemo. I won’t get into specifics but I did resort to shooting back a shot glass of Castor Oil.  It worked but it wasn’t pretty but desperate times call for desperate measures.   Dr Matt thought we might be able to avoid future unpleasant shots with some acupuncture. Today it was 12 needles; a couple in my hands, couple in my stomach, couple in my knees and then four in each foot/ankle.  Dr Matt likes to play with them, he says it makes it more effective, I think it’s to see how much pain I can take before I flinch.  It really isn’t all that bad.  A couple tight spots, particularly in the foot which he says is connected to my liver which is obviously working overtime processing all the chemo toxins.  I don’t know a lot about it but I trust Dr Matt so am definitely open to giving it a shot.   I have a couple more treatments scheduled before my next cycle so we will wait and see what happens in my November cycle.

Secondly I asked Dr Matt to do my Helixor injection.  This is a subcutaneous injection that I get in my abdomen.   It is a mistletoe therapy out of Germany and it helps keep the White Blood Cells “active”.  Chemo can often make the WBC sluggish which can cause a whole host of problems like lowered immune systems and fatigue not to mention the WBC then are unable to help fight any cancer related disease.  I have been doing these 2 – 3 times a week injections since June,  gradually increasing my dose.   Jared typically does these shots however at my new high dose it was started to sting a little bit.  I thought I would see if it stung less with Dr Matt.   Nope!   Still stingy but it only lasts for about 20 seconds so I think I can manage 40 seconds of sting each week for stronger WBC.   Who knows it might also help me fight off H1N1 Finally we took some blood for food allergy testing.  This was just a pin prick on the index finger and then swabbing a few strips.  The strips are going to be sent off to a lab that will help test for food allergies.  Well get a cool report back with lots of data which we are both excited about since we are both data junkies.    In the short term we are hoping this will help me with some of my constipation challenge but it may also identify a more serious allergy like Celiac which I have a family history of.   Celiac is a severe allergy to gluten products (wheat, oat, etc).  It also inhibits the absorption of nutrients in the intestines and consequently has been linked to numerous cancers.    I am keenly interested in knowing any allergies or sensitivities that  may be inhibiting me from absorbing the nutrients from the great organic diet I have been eating – although it will be hard to give you gluten products if it does come back that way.   Test results will be back in about 3 weeks.  Will update then.

If you are interested in more information any of the treatments don’t hesitate to contact me or visit these sites

Helixor – http://allgemein.mistel-therapie.de/index.php?page=35&lang=1

Allergy Testing – www.rmalab.com

Dr Matt Naturopath – http://www.grassrootsnaturopathic.com/

Celiac Disease Information – http://www.celiac.org/

Next Round of Chemo is scheduled November 5^th – 9^th, 2009 – update on Round 4 will come November 5th.

October 13^th – Phase 2.3 Complete

I took my last dose of Cycle 3 chemo last night.   Although the dose went up by 100 mg I experienced very little side effects, which was surprising.   I did experience nausea but mostly during the night.  I have had some restless nights of sleep (maybe this is a side effect), even though I did up my melatonin a little.  I have had very vivid dreams that are not nightmares but there is conflict of some sort, although I can never remember exact details.  The dreams wake me up throughout the night and I understand why they recommend taking the chemo before bed.  The nausea is definitely strongest in the hours just after I take it, so thank you to whomever came up with the out of the box idea to take it before bedtime.  It would definitely not be fun to have that level of nausea during the day – daytime TV is not that good.    All in all there was very little impact to my day to day in this Cycle, in fact I am disappointed I didn’t make more plans for the holiday.  Serves me right for putting out expectations that I was going to feel bad – I know better than to put out negative expectations on the unknown.

They didn’t call with MRI results so my assumption is that they we’re all clear again.  Hooray.

I do think that my one side effect (constipation) I can do a better job preparing my body for Cycle 4 to try and minimize this.  The week before Cycle 3 I definitely didn’t hydrate as much as I normally do and I didn’t eat as many green vegetables or flax, nor was as consistent with my supplementation as I did in Cycle 2.   For the next 3 weeks I will be a little more intentional with my diet and definitely look for some boosts to hydration and fibre the week before Cycle 4 begins.  Let’s see if that helps.  Will someone please email me on October 26^th to remind me of this commitment J

Cycle 4 is scheduled right now for November 5 – 9.  So back to an active recovery for the next 3 weeks, which will include more focus on diet and supplementation,  back to exercising 5x week, a check in with Dr Matt Pyatt (my naturopath) and more focus on taking care of my “terrain” including yoga, meditation and writing.  All of this will get me ready to glide through Cycle 4 with the same limited interruption to my life.

Next update November 5^th, 2009

October 8^th – Phase 2.3 – Cycle 3 Begins

Tonight I start my third cycle (that is the official term from the nurse) of chemo.  To recap the plan is to complete 12 cycles/rounds of this new higher dose of chemo which includes 5 nights of treatment followed by 3 weeks off.  See August 13^th update for a complete detail of the plan.

My dose does go up again this month.   Up another 40 mg which means I take a new pink pill with my two blue pills.   The measurements really don’t mean anything to me, other than I am taking more Temodol than I did last month.  If I continue to respond well I will stay at this 380 mg total dose for the remaining 8 cycles.   I knew that the dose would increase this month, so I have been really focused on hydration and eating well to hopefully minimize any enhanced side effects that could accompany an upped dose.

I had an appointment this morning with my medical team.  Love the 8 am early morning appointments which get me in and out pretty quick.   My blood work was “perfect” according to my oncologist who has a lovely accent and went through the blood work with me to explain what they look at to determine if I can start chemo.   I had MRI scans done on Monday however they were having problems this morning accessing the scans so I didn’t get any results.  My oncologist thought,  looking at my blood work as well the fact that I have not had any significant symptoms in the past month, that it would be surprising  if something negative came back on the scans.  She promised to call me if there were problems.  So I guess  no news is good news right now.

The appointment was brief, however I did learn some interesting stuff – Specifically

What happens after I complete the 12 cycles.

Why my headaches come back while I am on chemo.

Why I need to silence my inner competitive athlete.

What happens after I complete the 12 cycles?

Basically I go on a monitoring schedule where I will have regular scans probably for life.  The frequency will hopefully decrease over time, as long as the tumor doesn’t get any bigger.  My oncologist did say that there are options if the tumor returns, the best one being surgery however each case is individual.  Ideally the chemo I am currently on is the most effective chemo that they have, consequently although there are other options for chemo they aren’t as effective so we really don’t want to resort to them.   But I don’t need to worry about that as I know this treatment is going to work.  We will have a better idea of what happens next once we hit summer of 2010.  It’s good to know that there is an end date for treatment in sight.

Why my headaches come back while I am on chemo?

Apparently the anti-nausea that I take during the chemo has two side effects – constipation and headaches.  That was a relief to find out.  This whole saga started with a headache.  Consequently every time I get a headache now, no matter how mild, I worry that the tumor is getting bigger.   Although I won’t ever be able to suppress that concern entirely, knowing that headaches are a potential side effects of the medication does help me exhale a little bit.  I do visualize when I get the headaches that it is literally the chemo kickin the tumors ass, and the headaches are the side effect of the beating.   That also helps me relax and smile at the same time which inevitably relieves the headache a little.

Why I need to silence my inner competitive athlete?

I have taken up running again since diagnosis because I know that exercise is absolutely going to extend my survival.  I have been taking things slow and only running about 40 – 60 minutes no more than 3 times a week.  I take walk breaks throughout and my pace is definitely slower than it was when I was running more regularly.   However I have noticed that my legs have been very sore post runs and it takes me longer to recover.  My brother (who just ran the Toronto Half Marathon in 1.42- he is amazing) was the first to highlight that the chemo is a toxic drug in my system consequently my body is probably going to take more time to recover than I am used to.  When I discussed this with the nurse  she confirmed my brother’s speculation and indicated that I need to really listen to my body.  When I am fatigued I should rest.  She also thought that my 5 – 7 km runs might be a little too much right now and maybe to cut back if I was feeling sore.   I totally understand this concept and will follow the advice.  However this is going to be a new challenge for me.  Coming from a competitive athlete background where it was “No Pain, No Gain” and you never missed a workout, it is going to be a challenge to recognize that some days a walk is going to be as good as a run and that no one really cares that I am taking more breaks in my Yoga class.   I think finding this balance of exercise for healthy living rather than exercising to be competitive will be a good lesson for me to practice and the philosophy will no doubt spill over into other areas of my life.

The only other tid bit of information I got today was that although the chemo treatment won’t get progressively harder each month, I may experience more fatigue.  Again for an active person, it’s going to be hard to not just feel like I am being lazy when I feel tired.   Another good thing for me to practice – self compassion.   Yoga will help me with that self –compassion I need to work on.  Well 5 nights to go – with an added 40 mg.   Time to kick some tumor ass.

Next Round of Chemo is scheduled October 8^th – October 14^th – update on Round 3 will come in mid October.

September 10 – 14 – Phase 2.2

I did my next round of chemo this week.   I am still on the same protocol that I was on in August – 1 ant nausea, 1 hour before my 2 Temodol pills and then off to bed.  Repeat for 5 nights.    I didn’t take as much melatonin as I did in August.  Because this is my second (of 12) rounds, I have a better understanding of what to expect so I wasn’t as nervous and consequently had an easier time falling asleep.

Like in August, it wasn’t a walk in the park but handling the chemo definitely wasn’t a big challenge.  The first day I felt fairly nauseous, as I did on the first day back in August.   I sat and watched TV and drank a lot of tea.  I tell you, a hunk of raw ginger chopped up and stepped in hot water, well it works wonders on a nauseous stomach.   I loosened up on my diet a little bit, eating a little more toast and fewer vegetables to help my stomach relax.  However I kept my water intake very high to help with my hydration, which reduces nausea as well as to combat potential constipation from the anti – nausea.  I also didn’t stress about exercise, although I did try to get out for at least a walk every day.

Day 2,3,4 all went well, even managed a run on Day 4.  It was a sluggish, short run, but it was a run none the less.  My nausea subsided, I just felt really tired.  I asked Jared if he remembers me being tired in August during my first round.  He can’t say but he does remember the weather being crappy so it’s hard to tell if I was tired because of the weather or because of the chemo.   My energy though this round was definitely sluggish and fairly low, compared to my regular levels.  I told my friend Ange that it had to be the chemo kickin my tumor’s ass that was draining my energy.  That was an image that helped me feel better about feeling so tired.

Day 5 was a little tougher.  Headaches came back, a sharp headache that would start strong and then release however the pain was pretty constant throughout the day.  I didn’t take anything for it  just kept drinking water and laid low.   Every time I get a headache now it’s tough.  Considering it was head

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