Angie's Stem Cell Transplant 2006

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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.

Wednesday, June 28, 2006

Pulmonary Function Tests

Today, I visited the Dartmouth General Hospital for some Pulmonary Function Tests(PFTs). In other words, we were testing how well my lungs are working. We want to be sure my lungs are healthy prior to SCT plus we want to have some data to compare against future tests. Generally, there are three kinds of PFTs:
Ones that measure how well the lungs exhale
Ones that measure how much air the lungs can inhale
Ones that measure how effectively the lungs can transfer oxygen into the bloodstream
I only needed to have two of the above tests.

The first test I had was called a Forced Vital Capacity....it measured how much air I could exhale during a forced breath. After putting on my attractive nose clips, I started off breathing normally into the mouth piece. Then, I had to take a deep breath and blow out with a huge blast of air and keep exhaling as much as I could out of my lungs.....then I took another deep breath in. I did this 3 times to make sure we got an accurate reading. Forced expiratory volume is the most important measurement of lung function.

The 2nd test I had was called a Diffusion Capacity Test. Lung diffusion testing is used to determine how well oxygen passes from the air sacs of the lungs into the blood. The test measures the "diffusing capacity of the lung for carbon monoxide" How the test is performed:
You breath in (inhale) some gas containing a very small quantity of carbon monoxide, hold your breath for 10 seconds, then rapidly blow it out (exhale). The single exhaled gas is analyzed to determine how much carbon monoxide was absorbed during the breath.

The Respiratory Therapist told me that my results were in the normal range. This is good to know, considering all the chemo I have already received. Hopefully, my lungs will stay healthy after the SCT!

Thursday, June 22, 2006

Wall Motion Study

Today I went to the Nuclear Medicine Department of the New Halifax Infirmary for a Wall Motion Study....to see how well my heart is functioning.










This is the actual machine used to do my test today. I had to lie down on the imaging table, and the camera took an image at 3 different angles around my chest. I had 3 ecg pads attached to my chest to obtain heart rate data necessary to produce a movie of my beating heart, to see how well it is working as a pump.

Some of the chemo drugs I have received over 10 treatments may have caused a decrease in the efficiency of my heart. My doctor wants to make sure my heart is strong enough for the SCT. He also wants to have a baseline test to compare to after my Stem Cell Transplant.

A small needle was used to put a solution called PYP into my vein. This substance caused my red cells to become sticky. I had to wait 20 mins. and then I had a second injection of a small amount of radioactivity. Without the first injection of PYP, the injected radioactivity would not be able to stay attached to the red blood cells, and the images of blood movement in the heart would not be possible.

The 3 pictures took about 7 minutes each. I was in the room approximately30-40 minutes. A gamma camera is used to produce the pictures. The first picture was focus on my left ventrical. The other two pictures were focused on the walls & chambers of my heart.

Wednesday, June 21, 2006

Bloodwork & appointment with Dr. Couban

Our good friends David & Sandy Hamilton were in Dartmouth last Thursday & Friday. We all had dinner at my parents on Thursday night & then went out for breakfast on Friday morning. Afterwards, David, Sandy & I travelled together to Mahone Bay to do the tourist thing...then went for a scenic drive through Lunenburg & onto Bridgewater where I was meeting up with my sister & her family. I realized that this is the first road trip I have been on since this whole cancer thing started last September!!! We certainly picked one of the most beautiful drives in Nova Scotia!
From there, we were continuing on to spend the week-end at John & Coleen's cottage on Lake Molega. Mom, Dad (Happy Father's Day) & Sue all joined us on Saturday. We enjoyed the weather & being together.....fishing, pulling the kids on tubes behind the Jet Boat, & just cruising the lake.....
I spent most of my time in the boat, as it was the best way to stay away from the bugs....plus I found it very relaxing!!!
Thank-you to Coleen & John for being great hosts!

Monday was back to reality.....
8am. - I had to put a "Hat" in the toilet so I could collect my urine over the next 24 hours. Prior to a Stem Cell Transplant, this is a required test used to see how well my Kidneys are functioning. They have to be working OK to proceed with the SCT. This test, along with a heart and lung test will also be used as a baseline to compare with future tests after SCT. I mostly had to stick close to home Monday...because they wanted all my PEE for this Kidney Test! I did manage to take Dad out for lunch to Boondocks Restaurant in Eastern Passage....went for a short walk & ice cream after lunch......THEN back home to PEE in the "Hat"!

Now, it is Tuesday morning & I have my last PEE at 8am....actually, I cheated & went at 7:35am.....as I couldn't hold it any longer!!
At 10am......with my jug of pee, I head to the hospital for the 2nd part of this test....more bloodwork. I am still waiting to hear back from my nurse with the results...
At 11am. I have an appointment to see Dr. Couban. First, I meet with Joanne, the nurse. We review some more details about the upcoming transplant......
I discover, that because I collected so many Stem Cells, that they have to administer them back to me over 2 days....apparently, there is a limit as to how many they can give me back at one time. After, I get my Stem Cells back, I will not be allowed to leave my hospital room again until my blood counts come up to an acceptable level......that can take weeks!
I also had to review & sign a"Consent to Undergo An Autologous Blood or Bone Marrow Stem Cell Transplant". This form reviews all the procedures, risks and discomforts involved with the SCT....that is always fun. Nowadays, in the medical field you have to sign consent forms for every surgery or major procedure.....it is the responsibility of the hospital/physicians to inform you of all the risks involved even the minor ones....
Anyway, it can be scary....
of course the biggest risk for me is that I may die from the SCT....if you like percentages...which I don't care for too much....there is 5-10% chance that I may die from the SCT within the first 90 days following transplant due to infection, bleeding, or damage to my heart, liver, lungs or kidneys. OR you can look at it that there is a 90-95% chance that I won't die......CUP 1/2 FULL OR 1/2 EMPTY THING!!
Other risks & discomfort include: infection, bleeding, mouth pain, throat pain, diarrhea, seizures, rash, kidney failure, liver failure, and heart or lung failure. In the long-term, I probably will be unable to have children. There is also risk of secondary cancer caused by the chemo.
I may require blood and platelet transfusions. There are small risks that I have have a reaction to these transfusions that can be, very rarely, fatal. There is also a very small risk on contracting an infection such as hepatitis or HIV.

In my meeting with Dr. Couban, we again reviewed the risks on the form....however, he reminded me that our primary concern is to try & get rid of my Lymphoma.....this is the biggest risk of all!
He emphasized that he still felt that going ahead with the transplant was my best chance at remission &/or cure. He said if I went anywhere in the world for treatment....that any lymphoma doctor would be recommending the same thing to me......

So we can now move forward in confidence that this is what I need to do to have a chance at cure. I am determined to continue doing my part to take care of myself....with the food I eat & the excellent supplements I take everyday. I hope to minimize all the side effects & risks associated with the transplant so that when I am cured....I can continue living a full & healthy life.

Thank-you for all your support through this challenge.....I really need it & it does help. You are all part of my team....& one person on a team can't win the game by themselves......

Tuesday, June 13, 2006

Day 2 Stem Cell Collection

Today, Coleen & I made the trek to the hospital together for another collection of my stem cells.

I was hooked up from 8am. until 12:30pm and we managed to collect another 2.7 million stems cells.......now I have 5.4 million cells for my transplant day.....400,000 more than the maximum they were looking for.......SO lots available to recharge my batteries when I need them!

My stem cell nurse coordinator, Joanne met with us today to discuss the game plan from this point on. Over the next few weeks I will have some tests & doctor appointments. I will explain them as they happen.

Here is a brief summary of my countdown to my SCT:

DAY 5 - Thursday, July 13th I will be admitted to the hospital.
DAY 4 - Friday, July 14th I will be given a chemotherapy treatment called VP-16(Etoposide) over about 5 hours.
DAY 3 - Saturday, July 15th I receive a chemotherapy treatment called Melphalan over a 15-20 minute period.
DAY 2 - Sunday, July 16th NO CHEMO
DAY 1 - Monday, July 17th NO CHEMO
DAY 0 - Tuesday, July 18th **TRANSPLANT DAY** MY NEW BIRTHDAY

After my Stems Cells are transplanted into my blood we start counting up again. I will be in hospital 2-4 weeks after Transplant Day.

That is a general overview and of course I will provide more details as it happens.



Monday, June 12, 2006

Stem Cell Collection Day

Mom & I were up early today so we could be at the hospital for 7:30am. After the nurse collected samples of my blood, we headed off to get some breakfast while we waited to find out the test results.

The lab was slow today so we didn't find out our results until after 11am. While we waited I had a visit from George the Social Worker. He took my medical history & asked a bunch of questions to assess whether I am prepared to go ahead with SCT. The Social Worker wants to see if I have a primary caregiver in place to help me during & after the procedure, and that I am ok financially, emotionally etc. Fortunately, I am doing fairly well in all areas....






I also had a visit from my nurse, Angie who is the research coordinator for the study I am involved with. She is outstanding at her job.....highly efficient& organized.....lots of positive energy....with a great personality.







Good News!! My counts for 34+ white cells passed the test. They needed to measure at least 5 million/kg of my weight & they measured 27 million. Therefore, it is a go ahead for my Stem Cell Collection.

My nurse Cathy hooked me up to the aphaeresis machine around 11:30am. My blood is drawn out of my hickman line into the machine where the whites, reds & platelets are all separated in layers.



The Stem Cells come from the white cells and are removed from my blood into a bag.







Only about 1/2 a cup of blood is in the machine at one time ....after my stem cells are removed then the rest of my blood enters back into my body via my hickman line.

Mom was with me all day being extremely attentive to all my needs....I certainly feel cared for at all times!!!

Coleen (my one & only sister) popped in for a few minutes on her way to work. She works on the same floor that I am having my procedure but a different section of the hospital...

She will be with me tomorrow when I go back for another day of collection. So you can see that I am not lacking for support of my family!

We finished with the collection at 3:30pm. and then I had to go see the hospital dentist for an x-ray & a check-up to make sure there were no concerns heading into transplant. He said I was good to go!! Yippee....I passed another test....

On our way home from the hospital my nurse, Cathy called on my cell phone to tell me that my collection went very well. In order for me to proceed with the SCT, they need to be able to collect 2.5-5 million stem cells. They collected 2.7 million stem cells in one day.....so technically we have enough already....however, she thinks that the doctor will probably want me to collect more tomorrow so that we have plenty to get me back on my feet again after transplant!

Tomorrow, I will be hooked up at 8am. for further collection of my cells until they hear from the doctor.

Friday, June 09, 2006

GCSF Injections

I haven't written since last week, as there really hasn't been much to write about. This past week was a vacation from hospital visits & anything else to do with this tumour of mine. It has been good to have some down time to gather my strength for what is coming in the next few weeks.
Yesterday, was the start of my G-CSF ( granulocyte colony-stimulating factor)Injections also known as Neupogen Filgrastim. Filgrastim is used to stimulate the production of granulocytes (a type of white blood cell) in patients undergoing therapy that will cause low white blood cell counts. This medication is used to prevent infection and neutropenic (low white blood cells) fevers caused by chemotherapy. I received this medication after each of my chemotherapy treatments to help keep my white count at safe levels. The doses I received after each of my chemos was 300 mcg per day from 5-7 days.
My current doses are more than 4 times as strong as those previous doses. The VON (Victorian Order of Nurses) administers 1380 mcg for 4 days finishing on Sunday. In large doses this drug encourages stem cells to mature very quickly into Neutrophils (a type of white blood cell). Because it causes such a rapid increase in neutrophils, the bone marrow is forced to push the stem cells out of the marrow and into the blood to make room for all the new cells. Hopefully, by Monday morning I will have lots of stem cells in my blood to begin the collection process. I will get a blood test at 7:30am. on Monday to determine if I have the necessary 34+Stem Cells. If I pass the test, then I will be hooked up to the aphaeresis machine for collection. I will have my laptop with me so I can update it while I am having my stem cells collected.

Friday, June 02, 2006

Visit from Jeannie

Sue, Jeannie & I on the Back Deck
Jeannie & I in the morning room after breakfast.
It was a such pleasure to see our friend Jeannie visiting all the way from North Carolina!! (She is cheering for the Edmonton Oilers in their series against the Carolina Hurricanes.....so she is OK!) She & her husband Roger used to live in Nova Scotia and we used to do some hiking & kayaking with them. We met Jeannie when she decided to change her career from nursing to become an upholsterer!! She came into our foam & upholstery business one fateful day roughly 10 years ago asking a bunch of questions about our products & it eventually evolved into a friendship.
Anyway, we had a great visit & got caught up on each others lives. Hopefully, they decide to move back to Nova Scotia some day.....I know that Jeannie misses living here!

Landscaping Photos





Here are a few photos that demonstrate some of the changes on our property. We now have a good base to start planting trees & various plants. It rained last night & today so that is very good for our new sods. We need to give our grass a good soaking everyday for the next few weeks.