Day + 69 Radiation Begins

LINEAR ACCELERATOR
KIRAN & DEE

MOM (IN THE WAITING ROOM.....AGAIN!)

It has been a couple weeks since my last entry......
The first week, I spent trying to get my head wrapped around the idea that I had any activity left in this lousy tumour. I have to admit that I was quite discouraged, to put it mildly, that my PET/CT was positive. However, there is still a good chance, that with intense radiation therapy(RT) it will kill the remaining cells......& hopefully, none of these cancer cells have traveled anywhere else.

Last Tuesday, my Dad, Jasper & I went into "The Camp" for a few days of R&R. I rode my bicycle, read, watched inspirational DVD's, went for walks.....& used the time to prepare myself for these next 2 1/2 weeks of RT.

This morning, Mom & I went to my first appointment of the day....I had to be there for 8:45pm. to register. Then I changed into a Johnny Shirt & housecoat....I got to keep my jeans on. I was brought into my appointment at the scheduled 9am. time. Kiran & Dee (Deanna) are my Radiation Therapists.....for the duration of my 25 treatments. I will also be on the same machine for all the treatments, unless it decides to act up. We have 3 machines that have the capacity to do my treatments. I really like the fact that that same two people will administer my treatment every day....we are already developing a relationship & it will be comforting to have that familiarity.
My first appointment took about 45 minutes.....as they had to get all the kinks worked out....they performed x-rays....so they could use pictures of my bones to help with lining me up properly....they also had to get me positioned properly in my VacLock(a mold of my body to keep me still) , warmed up the shields that protect most of my organs.....surrounding the treatment area in my chest. Once they had me set up to their liking, I received my dose of radiation. I received 2 doses to the front of the chest & one to the back of the chest. As I mentioned before, I will receive 25 treatments over two & a half weeks. I will go Monday-Friday twice a day with 6 hours between treatments on the same day. For those of you who like to know the technical side of things.......I will receive 45 gray(Gy) which equals 4500 centagray(cGy) in total over 25 treatments.
Each treatment will equal 180 cGy....since I am having 2 treatments a day, that means I will receive 360 cGy per day.
To break it down further......Dr. Wilke has designed two fields in my chest & one field in my back......
the larger field in my chest, covers an area that includes my tumour, plus a larger area that covers a good portion of my media stinal area where my tumour used to be when it was larger. He does this, so that he will kill an micro cancer cells that may be there but are not visible via the Pet/CT scan.... the first dose of radiation is for 74 cGy & took approximately 30 seconds to administer.
the smaller field in my chest, zeros in on my actual tumour mass. After the first dose of radiation, a second dose called a "Boost" is administered......this dose of 8 cGy only took a few seconds. (therefore, my actual tumour is receiving a higher dose....74cGy plus 8cGy)
the larger field in my back is the same size as the larger field in my chest, however the dose is 98 cGy. Apparently the dose is higher because it needs more energy to reach the tumour from that position....it has something to do with physics that was difficult to explain.

The machine used for RT is called a Linear Accelerator.

After my first treatment was over, we went over the side effects again.....(I do not feel anything while receiving treatments).....
probably by the end of the week, my skin will start to feel sensitive in the treatment area....like a sunburn.....eventually, it will feel like I have a lump in my esophagus.....I may have trouble swallowing foods....therefore, a liquid diet may by in order. This lump feeling is really just a bad burn to my esophagus.....& food will irritate it while traveling to my stomach.
Another common side effect is "Fatigue"......everyone handles this differently....so we will see.....apparently exercise helps.
Anyway, I will describe any symptoms, as I experience them.

After my appointment, I had to go for bloodwork. Every Monday, I will have bloodwork.....RT also kills good blood cells.

In between appointments, I went for a late breakfast at Mom & Dad's house.....then for a walk with Mom.....then I went home to rest & read a book on my swing.....it was a beautiful warm sunny afternoon.....
At around 2:45pm. I headed back to the hospital picking Mom up along the way.....my appointment was at 3:30pm......it was on time & went smooth....I was home by 4:30pm.

1 day done.....only 12 more to go!

Day + 55 Pet Scan Results & Radiation Plan

I met with Dr. Wilke (Radiation Oncologist) this morning regarding my PET/CT Scan from the University of Sherbrooke Hospital. We only have the written report so far......they are being much too slow for my liking sending out a copy of the CD with the pictures.....

Unfortunately, my scan appears to still show a reading of 10 SUV (standardized uptake value)in the residual mass in my chest. This means, that there is probably still cancer activity in my tumour. The upside, is that nothing irregular shows up anywhere else in my body. The Pet Scan I had on March 17th had an SUV of 16.....therefore there is a decrease.....
Obviously, I wanted there to be "0" SUV.......we just continue to fight!

Dr. Wilke's plan of action, is to treat me with a total of45 Gray (A measure of absorbed radiation dose. One Gray equals 100 rads, in the older terminology) over 25 treatments. These treatments will occur twice a day for 2 1/2 weeks. He feels that because my lymphoma is being a resistant bugger, that it is better to attack it quickly & hard.....don't give it a chance to multiply. My treatments will be approximately 6 hours apart....therefore, I will go to the hospital first thing in the morning & again at the end of the day. Even if my Pet Scan came back negative for cancer cells, Dr. Wilke was still going to radiate.....the difference being that he would have treated with a dose of 36 gray, once a day for 20 treatments.

The size of my tumour is now: 1.6cmx2.3cmx1.9cm....this is smaller than a CT scan showed on May 25th after my 2 high dose chemos.....I only have 2 measurements on that tumour of: 1.7cmx3.1cm. This indicates that the Stem Cell transplant still did something to the size of the tumour.

Dr. Wilke is hoping to start my Radiation Therapy (RT) next Monday or Tuesday. He really wants to get the CD of my PET Scan in his hands first.....
I also have the "Best Doctors" organization working on getting another copy of the CD for their doctor to evaluate and make recommendations for my case.

Dr. Wilke feels that there is an 80% chance that the radiation will kill the cancer cells in the tumour in my chest.....the concern will be if any cancer cells decide to find their way to another place in my body.....this is why we need to act quick with the RT.
A couple of positive things to mention are:
first, that in the year since my initial diagnosis, my lymphoma has stayed localized &
second, my tumour is the smallest is has ever been.....so hopefully, the radiation will do its job & kill the remaining cells AND that will be the end of it!!

Other than what I have mentioned above, I also had my markings done today. Basically, I had to lay on the table of a CT Scan machine on top of a plastic bag with foam beads inside. This bag (called a VacLock) is used to make a mold of my upper body....air suction is used to help mold the shape. I have been through this procedure twice before....but we hadn't followed through with radiation treatments yet. This time I did not have tattoos as they were able to use the tattoo markings from previous sessions. There are 4 tatoos kind of like the 4 points of a compass. They are just very small black dots...like a pen mark. These dots are used to position my body for accuracy...so that my radiation treatments will hit the correct location of the treatment area......this is basically in the center of the 4 black dots.
Once I was lined up & molded the movable table ran in & out of the tubular shape machine....Dr. Wilke was behind a window, operating the controls that allowed him to set up my field for my future RT's.
Next week, I will go to a different machine to receive my actual treatments. Each treatment will consist of one shot to the front of my chest & one shot in my back....both radiating the area of my tumour. ( I have been told that they are about 2 minutes each)
I will of course provide more details as they happen.

Well, that is about all I have to report today.....I have certainly had better days....but it isn't all bad...& we have to hope that the radiation will finish of the job.

Day + 54

Physically, I have been feeling stronger every day......I walk & ride my bike regularly.....I am doing more & more yard work & other chores...which allows me to feel more productive & independant.
It is the mental side of things that I am finding the most difficult. This whole experience is never too far from my mind....& I have to make a conscious effort to control my thoughts....& not allow them to paralyze me with fear....so I can have normalcy in my day to day life.
Some days are better than others & I really appreciate those......
As Sarah informed me, this thing called "scanxiety" is very common whenever we face a new PET or CT scan.....so keeping your mind under control at these times is even more challenging!

My Friday appointment with Dr. Anderson was very helpful to me.....he really took time to listen to my questions & his answers were very thoughtful.

The first question I wanted to know was:
Does he feel that a maintenance treatment of Rituximab(Rituxan).....every two months for 1 year..... would benefit me? Does the study I am participating in show any indication one way or the other?
Dr. A feels that in my case, since I have already received 10 treatments of Rituxan over the past year....in conjunction with my chemotherapy treatments.....that Rituxan would probably not do anything further for me. The study is not showing one way or the other whether Rituxan is benefiting as a maintenance treatment in Large Diffuse B Cell NHL.....it will take many patients over several years to know the answer.

Rituxan is still being studied & there are still so many questions regarding its long term effects. It is still a drug & all drugs have side effects....one concern/question about Rituxan is.....what are the long term effects on the immune system? Since it is an immunotherapy drug....& works with our natural immune system.....will it cause problems in this area??

I also wanted to know his opinion on whether he recommends Radiation treatments in my case?
He feels that Radiation Therapy is a reasonable course of treatment for me to pursue.
I've been treated with 11 rounds of chemotherapy during the past year....the last 3 being as strong as you can get.....my tumour is isolated to one location......Radiation may help prevent a reoccurance of my lymphoma. There are of course risks associated with any treatment.......with radiation to the chest we have to be concerned about toxicity to the heart, lungs, thyroid & breast tissue. Radiation will increase my chance of secondary cancer in these areas & other types of damage....ie. like to the coronary arteries of the heart.
Fortunately, my tumour is located more to the right of the centre of my chest so the radiation will only touch a small portion of the right of my heart.

I will know more details tomorrow after meeting with my radiation oncologist...Dr. Wilke. He will use a CT machine to define the size of the area he will treat plus he will determine the dosage of radiation he will apply over a 4 week period. If the PET Scan shows no activity, then he will probably treat me with a lessor amount then if the PET Scan shows positive for cancer cells. The idea here, is to treat with just enough radiation to do the job & hopefully not any more.....as this will help lower the long term risks.

I will update more after tomorrow's appointment.....

Day + 50 PET SCAN

Sue & I are back safe & sound from our trip to Sherbrooke, Quebec. We stayed at a couple of very lovely campgrounds along the way & really enjoyed travelling with our small truck camper.
On Thursday, August 31st,the day of the PET Scan(http://www.petscan.ca/petinfo.htm), we arrived at the hospital around 10:30am(didn't want to be late).....took care of the administrative details like obtaining a hospital card & providing the necessary paperwork from Nova Scotia MSI showing that they would pay for the test.
While waiting for my appointment time, we sat out in the parking lot with the truck camper popped up & visited with our friend Lucien who drove down from Montreal for the day. At about 1:45pm. we started to make our way to the building where the PET machine is located.....filled in some forms .......at 2:30pm. the technician brought me to a room to hook my arm up to an IV Cath....tested my blood sugar level....then injected me with the FDG subtance....which is basically a radioactive sugar. After this ingredient was injected in my body, I sat around for approximately 1 hour...to allow time for the substance to find it's way to areas in my body that have fast growing cells...ie. cancer. After an hour, I was taken into the room with the machine.....I lay down with my hands over my head....& was told to lay perfectly still. I was laying on a movable bed that slides through 2 different cylinder sections. The first section is where the 2 CT scan pictures were taken.....the second cylinder is where the PET pictures were taken...there were approximately 8 pictures taken over 25-30 mins. Afterwards, I waited for a few minutes while the technician checked to make sure the test was readable.....then I was done.
We checked into a motel near the hospital, went for dinner with Lucien & then to sleep early. The next morning we were up early & on the road by 7:30am.....we took a scenic drive from Quebec - Vermont - New Hamshire - Maine & ended up in Cambridge Narrows, New Brunswick. We stayed Friday & Saturday night with our friends David & Sandy....headed home Sunday.
I have not heard the results from my PET Scan yet...but expect to hear from my Radiation Oncologist soon.
I went for bloodwork today & will see my hematologist on Friday morning to discuss some of my questions.
That is all I have to report for now....