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Location: Nova Scotia, Canada

In Sept./05 I was diagnosed with Primary Mediastinal Large Diffuse B Cell Non Hodgkins Lymphoma. The tumour in my chest measured 10cm x 10.6cm x5cm. After I completed 6 rounds of CHOP-R chemotherapy, a CT Scan in Jan.06 showed that my tumour had decreased by well over half the original size. A Gallium Scan showed negative for cancer cells in my mass. We decided to do 2 more treatments to be sure we killed any remaining cancer. We now had to decide if I should proceed with radiation. Did the risks of radiation outweigh the benefits? My hematologist and radiation oncologist had excellent arguments for both sides of the coin. The decision was to be mine. They set up appointments for me to see doctors in Toronto and Vancouver for 2nd opinions. In Vancouver I had a PET/CT Scan (a superior machine to a Gallium Scan) to see if my tumour was active. On March 17th this scan revealed that my tumour WAS still active and had INCREASED in size from an early scan. This meant that I had Relapsed or Refractory NHL....my best chance for cure was a Stem Cell Transplant. In my blog, I will describe what I am going through before, during and after my transplant.

Monday, September 25, 2006

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!

9 Comments:

Anonymous Anonymous said...

Dear Angie, We were so excited to read your most recent entry....good to hear you have started the RT, we are positive that this will be the final push needed to rid you of this disease! You are a very brave girl and if any one can beat this, we know it's you. Take care of yourself.
Love from Marie, Graham, Katherine and Emily

6:46 am  
Anonymous Anonymous said...

Hi Angie,

Im happy to hear that your first treatment went well. Thanks for the in depth explanations, it gives me a better understanding of what you are going through...and is impressive how well you explain it. It is great to know how supportive your family has been. I am thinking of you and am ever so inspired by your determination and will to beat this!
Cheryl

11:25 am  
Anonymous Anonymous said...

My God Angie, you are simply amazing. We can only imagine how hard it is to stay positive but we are convinced if anyone can do it, you can. We think of you often, Sue M. has kept us up-dated. Blast that sucker to Kingdom Come.
Love, D + L

8:35 pm  
Blogger Unknown said...

Hi there, Angie -- so glad you posted. I completely understand your needing to process your experience and the need for further treatment before reporting in here on your thoughts and feelings. :) You said you needed to wrap your head around the positive PET, but I think it sounds more like it's your heart. This process -- this whole THING -- is just so, so hard. I think sometimes for me there's a bit of a lag between my mind and my emotions; I've figured out that I process things much more quickly mentally than emotionally, despite being a pretty "emotional" person. I'm just sorry that you had to process anything at all.

I think I said it before, but it's pretty widely accepted that radiation plays a really key role in a successful transplant. (That's why Emory, where I'm getting my transplant, follows Sloan Kettering's lead in scheduling radiation before the transplant.)

I'm just over halfway through my 12 radiation treatments. I'm already experiencing some fatigue, but so far no skin sensitivity -- USE THE CREAM PROACTIVELY AND RELIGIOUSLY! They've taken great care to avoid radiating my esophagus (thank God my relapse site is farther over on the side of my clavicle.) I was so worried about it because of all the damage caused by my childhood poisoning and the subsequent heavy radiation (countless X-rays mostly weekly throughout my childhood)-- so I'm indescribably relieved. Therefore, I have bypassed the swallowing/throat pain many experience. One side of my thyroid is getting zapped, however, so it may be compromised -- or I could luck out! I'm hoping so, but if it is, I'll just deal with it.

I hope you and Sue are finding your way with all of this -- I was so sorry to hear of the uptake, but it really sounds like they're hitting it hard with the rads -- so that's EXCELLENT news!

You're very much in my thoughts, Angie.

Big hugs and lots of positive vibes, girl!

9:04 pm  
Anonymous Anonymous said...

I have you in my thoughts and am sending you positive vibes to get through all of this. You are a Trooper and very strong! I wish you tons of success with these treatments!!!!!!

Susy (from the Lymphoma message board)

9:39 pm  
Anonymous Anonymous said...

Angie,Thanks so much for taking the time to share this experience - in some way it lets us be there with you & I hope you know we are. So let's get this RT going and be done with this tumor once and for all! Good vibes as always, Rhonda.

7:48 am  
Anonymous Anonymous said...

Angie: Glad to hear from you again. Don't want to sound like a carbon copy/stuck record, but everyone obviously thinks the same of you - an upbeat, leader of positive thinking, a "bring-it-on" kind of girl. I can't imagine trying to wrap your head around it - I think it's human nature to be surprised and find it almost impossible to accept that we are actually mortal - the challenge is to stay that way as long as we can - you obviously have a plan with no intentions of deviating from it. Like they say, if anybody can do it, it will be you.
Brenda & Gerry

1:59 pm  
Blogger Unknown said...

Hi there, just checking in on you! How are the rads going? So do you have to wear the mask? I do and I DETEST it! Are you being a responsible rads patient and using your cream religiously? Oops, that reminds me that I haven't yet used it today! *gasp* (I find it easier to remember it on the weekdays, when I get treatment.) See how you just give and give, Angie? ;)

I'm finding that the fatigue is getting to me now, so you definitely have my sympathies getting treatment when you're still recovering from your SCT. You're a trooper.

Sending love and hugs to you and Sue....

Sarah

11:05 pm  
Anonymous Anonymous said...

Hey Ang,
Just wanted to send you lots of hugs and support from Fredericton. You know what is going on in my life right now, and I know you support me, but I just want to make sure you know that I send you tons and tons of support from this end. You're an absolute great friend and support and I send you nothing but great thoughts.
All my love, Emily

9:40 pm  

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