Once a Cancer Patient, always a Cancer Patient?

So, a bit has happened since my last blog post. On Tuesday October 4th I seen Dr. Gupta at the Cancer Center. Dr. G. is new here at our Cancer Center in Windsor, ON. and is currently filling in for my regular oncologist, who is on sabbatical.


Dr. Gupta graduated from Government Medical College in Amritsar, India 2003, completed her residency in internal medicine at Wayne State / Detroit  Medical Centre (DMC) and her Fellowship at Barbara Ann Karmanos Cancer Institute. She is a member of the American Society of Oncology and Hematology (ASCO), American Society of Hematology (ASH), American Association of Cancer Research (AACR) and the American Medical Association (AMA). Dr. Gupta joined the Cancer Program in 2011 and her specialty areas are breast, lung, hematology and gynecology.


She seems good at what she does. She had researched my history before I seen her and had familiarized herself with all I have been through. She also gave me a full check up, and spent time checking my abdomen, I had told her about the pains I'd been having. She said she did feel something that did not seem right but, she stated that there was nothing showing in the C/T, ultrasound, or x-rays that I had done two weeks prior.

I also informed her that I would be seeing Dr. Peer, an internist later that same day. I have to say, I was impressed with the time she spent with me.  When I asked if she was here to stay, she stated that she would be here for a least a year, and then take it from there.She had even called me back the next day with an answer to a question I had asked at my appointment.

Later that same day, the 4th of Oct. I seen Dr. Peer. in the afternoon. Again another appointment I was impressed with. Dr. Peer, also was very pleasant and took the time to listen to my concerns. We sat down in his office for a consultation first, followed by a full exam, and then back in his office to discuss things. After I brought him up to speed on my history, he said that he would like to have me in for the colonoscopy A.S.A.P. and to see his booking secretary to book the procedure.

The booking secretary stated she had an opening for this coming Tuesday October 11th, but with it being Thanksgiving weekend here, she did not want me not enjoying the festivities, so she booked me for Friday the 7th October, which meant I had to start the prep immediately! So having had a bowl of cereal and a coffee and donut in between appointments, that was going to be it, nothing more to eat until after the procedure on Friday. She then gave me a prescription for Pico-Salax to get the ball rolling so to speak.

Oh what a joy the next three days were, besides the fact of nothing but fluids for those days, there were of course were the other effects that go along with the "clean out" process. Friday could not come fast enough. From the time I started taking the Pico-Salax Wednesday afternoon, the parade was on from my perch here in front of my laptop, to my throne in the other part of the apartment. I think I wore a path in the carpeting!

Finally, Friday the day of my procedure was here! Brenda had me at Windsor Regional Hospital Met Campus for 8:00am. My appointment was for 8:30am and I was told to check into admitting for 8:15am. After getting checked into admitting we headed down to the Endoscopy area on the lower level and got checked in there. After about a half hour wait, I was called to the window and given a questionnaire/history paper to fill out and consent form to sign.

I was about another twenty minutes or so before I was finally called in. Once in the wait/recovery room I changed into one of those wonderful hospital gowns and hooked up to an IV. Of course once all that was done and I laid there for about five minutes, I had to go! Couldn't have happened before I was all hooked up and had to drag a pole into the washroom with me. Once back on the gurney, it was about another twenty minutes or so before the nurse finally come and wheeled me into the procedure room. A shot of conscious sedation and the procedure was under way.

I did mange to watch most of the procedure on the monitor. We were not far into the procedure when there it was, a dreaded polyp! The damn thing looked huge on the monitor, but of course it was magnified, and when I spoke with the nurse later back in the recovery room, she stated it was "just a tiny one", but would still be sent away for pathology. No mention, nor do I remember much more from during the procedure, about what might be causing my abdominal pain. Just some paper work about polyps and told to call Dr. Peer for a follow-up to go over the outcome of the procedure with him in three weeks.

First things first, as soon as we got to the hospital lobby, it was straight to the Tim Horton's counter for a coffee! Ahhhh, now we're talking.  I was so dry I was spittin' sawdust. From there we headed home, and soon as I got settled back at home, it was time for a bowl of Multi-Grain Cheerios! Food once again!

To go back a bit, to while I was waiting, one of the nurses from the chemo suite at the Cancer Center walked by and said hello, and sorry to see me there, jokingly of course, referring to being in the Endoscopy waiting room, then, once I was inside and being wheeled into the procedure room, another familiar nurse from Four West, Oncology unit said hello. I guess she's working down in Endoscopy now. Once I was in the procedure room, I had heard her say to one of the other nurses out in the hallway, "Tim is one of my old oncology patients from when I was on Four West".

That brought me to pondering a thought as I was writing this post today, is it really true?, Once a cancer patient, always a cancer patient? I believe that may be true of most cancer patients, from talking with survivors and patients alike, I've found that most agree that there really isn't a day that goes by that you don't think about, all the tests, results, what's next, or worrying about every little ache and pain and wondering, is "it" back?

Speaking for myself, I don't think there is a day that goes by that I don't think about "it" either. The little or big pains, the tests, the Dr. visits. It all adds up to always being just that, a cancer patient. Of course for me that is true anyway, I am currently still a cancer patient, doing the watch and wait thing, but I speak of others out there, that have discussed the issue with me of always being a cancer patient, the worries about "it" being back.

So today, I put that all aside, or at least try to fool myself I did, and save that for another day. Brenda and I, along with her mom and brother will be celebrating Thanksgiving, and giving thanks for our lives, and all that is a part of them. So from our table to yours, I wish you all a very happy Thanksgiving, enjoy.

Follow up & a Bonus.

 Thanks to everyone for all your comforting and at time hilarious responses to my last post on here. Since that post things took a few more days to "get moving" and seem to have leveled off for now. Not sure what that was all about, but hope to get some answers soon.

 It was not a fun week by any means, and I can't count all the medications I took to get things moving again, but I am glad to lay off of them now. I am again eating somewhat normal, so we will see how it goes over the coming days.

 I will be seeing a "new" oncologist at the Cancer Center next week, Dr. R. Gupta. I've heard good things, and as my regular medical oncologist told me," it might be good to have a fresh set of eyes" look at my case. I agree, and look forward to seeing  her.

The same day, later in the day, I will all be seeing Dr. Peer a local Internist, for consultation for a colonoscopy, If I recall correctly, it's been about three years since my last one. Probably overdue I guess. I recall my last colonoscopy by a different Dr. and woke up during it, thought the probe was going to push straight through my abdomen from the inside out! Hope if I do have another, they give me a good dose of what ever it is, to knock me out!

 This Saturday night is going to be a night of entertainment, courtesy of my friend and former co-worker/landlord, Deb Palmer. About a month or so ago during a conversation we had I mentioned Roger Daltrey was going to be in town at Caesars Windsor to perform The Who's Tommy. The next thing you know I have tickets to see this "historic" event. Wow! Last October Brenda and I got to see Roger Waters perform "The Wall" live in Detroit courtesy of Brenda's Uncle Tom, and now this October, "Tommy", courtesy of Deb! Thanks Deb, we are so thankful, and looking forward to it!



It's nice to have such caring, and generous family and friends! Living on a disability pension is another obstacle  in itself! It is very hard living payday to payday, but we do it, and like I said, thanks to the generosity of family and friends, we get to enjoy these outings and getaways that we would not otherwise be able to do! So again, thank you everyone, we are very appreciative of your generosity. Now, just to win some more contests! I'm in a dry spell this year, and hockey season is upon us. Last year I did well winning tickets to Windsor Spitfire games.

 This week has been an extra special one with the release of all the newly remastered Pink Floyd material, all I can say is, I've died and gone to heaven! If you haven't already you must check out Why Pink Floyd? and see all of the material and box sets now available. I have to say, two of  those items are on my Birthday/Christmas wish list, The Dark Side of The Moon Immersion Edition, and The Discovery Edition Box Set, which is all 14 of their albums on CD remastered! Check out the short video below outlining all that's available, along with some of the best music in the world to listen to while you watch! Enjoy.



 As a lot of you know, and if you don't, you do now, Pink Floyd is at the top of my all time favorites list, and will always remain there. This is the music that helped get me through some of my toughest days while waiting for, and during treatment. My mp3 is loaded with only Pink Floyd, hours and hours of it!

 As an added bonus I leave you with, Roger Waters performing with The Foo Fighters on Late Night with Jimmy Fallon this week. Until next time, Enjoy!

The Interview:



The Performance:

It's a "Crappy" world I live in! and a P.S.

    There's been a lot going on since my last update. After my Oncologist visit last week I got a call the following morning with my C/T appointment, which was Monday afternoon, and not a moment too soon. The pain in my abdomen and lower back became all most unbearable! It really kicked up a notch on Friday and continued to get worse throughout the weekend. Monday could not come fast enough.

     I was pretty much in agony on Monday and was glad to get the scan over and done with. Maybe this would shed some light on what was causing all this pain and being uncomfortable. By Tuesday the pain had again doubled, abdomen, lower back, right hip. By Tuesday afternoon enough was enough. Off we went to the Emergency Dept.

     After about an hours wait, I was finally called in. I informed them of the level of my pain and where it was and told the nurse I really needed something for the pain. What I had been taking (Hydromorphone) was not enough, it was not even touching the pain at this point. She then proceeded to insert a shunt for blood work and any possible IV's.  Good luck! the day before when the tried to put in a shunt for the contrast for the C/T scan, it took them five trys before finding a vein the could get flow in and out of!

     This day was going to be no different, four trys before they found one, I say "they" because a couple different nurses tried, as was the case the day before as well. After finally getting a good vein that worked the took the blood samples, and the nurse said the Dr. would be in soon. After some time the Dr. finally came in, poked and prodded and asked questions. After informing her of what has been going on and how this has progressively gotten worse of the past couple months she left the room to go order an ultrasound. I also informed her before she left the room that I had gotten nothing for pain yet and to please get me something for  pain.

     A few minutes passed then a porter came in to say he was taking me to ultrasound, after wheeling me down to ultrasound, I was parked in the hallway outside in the waiting line, thank goodness only one other gurney ahead of me! It was about fifteen minutes before the technician finally came out and wheeled me in, she did the ultrasound, took many stills, then wheeled me back into the hallway in the lineup to got back to E.R. It was about five minutes when the porter returned and brought me back to E.R.

     After getting back the nurse came in again shortly after returning and I again informed her I really needed something for pain, please! She replied, "no one gave you anything yet", no they haven't. She went off and came back with a syringe of pain relief, finally! It was about five minutes later after getting the shot that I started to feel some relief.

     It was probably another twenty minutes or so that the Dr. came back in and said she was going to send me down for x-ray's now. The same porter was there within minutes and took me down the hall for x-rays. The nurse asked if I was able to get off the gurney on my own and make it over to the x-ray table, to which I replied sure! After sitting up to get off the gurney I thought it best I take a second or two to gain my bearings before walking the few short steps to the table, the pain drugs were kicking in full now.

     Shortly after getting back from x-ray the nurse came in and asked "if the pain was gone or if I needed more medication for pain". Since the pain was not completely gone, I replied, "no the pain was not totally gone" and asked for more, after all I still did not know how much longer I was going to be there. I am sure most of you know just how comfortable those emergency room gurneys are right?  NOT! 

    It was when the nurse came back in with my pain medication that she informed me they would have to take more blood for blood work, when I asked why, as this had already been done, she informed me that I came out so slowly the first time as they did not have a good enough line in, that it had clotted and they needed more to redo it. The nurse from the lab had followed her into the room so she took blood, then I got my pain shot. 

    So that means that I will be there at least another hour to get the blood work results. As we had been there about three hours now and it was around six thirty, Brenda was getting hungry, and it was decided she would go home for a bowl of soup, as the hospital cafeteria was most likely closed now. So Brenda left to go home to get a bite to eat. Not a minute after she leaves the room the Dr. finally comes back in and says after looking everything over, they noticed my bowel, and intestine were "full", and she was going to give me a prescription for CitriMag, make a referral to see and endocrinologist for consultation for a colonoscopy and send me home, when I asked if that was going to be right now she said yes. 

     I immediately called Brenda hoping to get her before she left the parking lot. She was in the car but had not left yet, so I told her to hang on a few minutes and wait, I would be out shortly as I was done. After getting dressed the Dr. and nurse came in with my prescription and referral paper, unhooked me from the B.P. cuff and took out my shunt, and I was on my way, hopefully this is the answer and end to the pain.

    

      After getting in the car, I informed Brenda that they had finally after looking at everything came up with the diagnosis that I was "full of shit" literally! She chuckled and said I could have told the Dr. that, all they had to do was ask! lol. Anyway, I told her they said everything was full, backed up and we needed to stop at the drugstore on the way home to get my prescription. 

     

      So, after taking a full bottle of CitriMag, doing it in thirds four hours apart, you'd have thought that would have worked. Nope, a got out very little with that and mostly gas! Unreal. So I called the hospital back the next day to tell them it did not work, and should I try another bottle, all I got from them was if I feel it did not work I should come back in. Since I did not want to do all the waiting again I called my home nurse and asked, he told me it could not hurt so go ahead. I did. I went and got another bottle and this time took it half and half. Half right away and the other half four hours later. I again had "minimal" success with the second bottle!! WTF!

  

      Next morning, yesterday, I call for an appointment and get in to see my G.P., I informed him of the happenings of the past couple of days and ask him if he could prescribe an enema from me. He gave me a prescription for two enema's, I left, stopped at the drugstore to pick them up, The woman at the pharmacy counter was in disbelief the two bottles of CitriMag did not work!  I got my prescription and headed home. Shortly after getting home, my home nurse arrived and did my normal check up and I showed him the two bottles I just picked up. He did not seem to think I would have much success with them as that only cleans out the bottom end of the intestine, and the CitriMag probably did not do anything for the top end.

      After my nurse left we did the enema, again, got very little out from that!! What the heck. Later in the afternoon I finally had a movement that was "something" more that what I had been getting. Still nothing big enough to think I've emptied the top half out. I called my oncologists office to see if they could call in a prescription for Lactulose which my home nurse had suggested might work on the top end stuff if the enema did not work. Later in the early evening I called the pharmacy to see if the prescription was ready, I found that they had never called it in!                                                                                                                                                

      This morning after having a very uncomfortable evening, I called the pharmacy that is located in with my GP's office and asked them to have him fill a prescription for me for the lactulose. I am currently awaiting a call to say it's ready, should I not hear from them by twelve thirty, I'll be calling back to see what's going on, before my GP closes at three o'clock.

   

     So, I continue the vicious cycle of taking pain meds for the pain, yet bind me up, and then taking everything on earth to try and get things moving again. I have to say, after all I have been through with chemo, transplant, radiation, etc. This has to be the worst in my life I have ever been backed up, not fun, a lot of pain, abdomen, back, right side. I would think if there was an obstruction they would have seen it somewhere in all the imaging they did, C/T, ultrasound, x-ray, and the blood work must have been OK, I did not get any phone call saying otherwise.                                                                                                                            

     So, again, here I sit, doing my favorite thing, waiting! 

P.S. Just to add, as the ER Dr. had a chance to see my C/T results and report from Monday, and she told me that the good news was the C/T did not show any "substantial" change with regard to my cancer progression. So there was some "good" news to all of this!

    

World Lymphoma Awareness Day 2011 and My Appointment.

Me, Shannon,(Tim Horton's Mgr) and my Uncle Don

This year the timing of my next follow up appointment with my medical oncologist, just happened to coincide with World Lymphoma Awareness day. The day started as usual with my morning coffee with my Uncle at Tim Horton's, but that was it today, no walk.

My appointment at the Windsor Regional Cancer Program was for 9:15am so I had my Uncle drop me off there just after 7:30am. Yeah, I know sounds a bit early, but normally would not have been. The lab opens at 8:00am, and, I thought, I was suppose to get blood work done before my visit with the Dr. Nope, no blood work today, not in the system. I was sure I was to get blood work every 3 months but apparently not.

So yes, I was indeed very early now. There was other things I could get out of the way however, like doing my ESAS on the computer, getting my pager to be called with when they are ready for me, and then drop off the ESAS printout and Dr's paperwork at the Pod A desk. I also took this time to go and weigh myself for the Dietitian whom I would see after my Dr. appointment, also there was an appointment with my social worker afterward as well.

While waiting I went into the Patient Resource Library and looked up some things on line, and checked out what new books were in. It was while I was in there that my pager went off! What? pager? already?, Not to knock it but this is probably the earliest I have ever gotten in to see the Dr.! Nice. Well maybe not, Brenda is not here yet, as it is only 8:45am and my appointment was for 9:15am so she was on her way but not here yet.

Well, don't get too excited, it was just my primary nurse calling me in to do my vitals and go over my ESAS and any new concerns. Yes, there were new concerns, concern about this lower abdominal pain I have been having. I told her I had seen my family doctor about it, and that he had it pegged as Irritable Bowel Syndrome. I told her that after taking the medications he gave me with no results, I quit taking them. There had been two different medications he had me on, first was Dicetel, and after that did not seem to help he put me on Donparidone which did not help either. I also told her I would not leave today without a scan or ultrasound appointment. We need to get to the bottom of this.

It was while I was in the examination room waiting for the Dr. to come in that Brenda finally arrived, whew!  You see, with my memory the way it is, chemo brain and all, I really need her there to take notes and remember what was said, because I know I would never remember, or at least screw up what was said. That is how I got here early in the first place, something I thought the Dr. had said in the past, but didn't of course.

When the Dr. finally came in she went over the primary nurses notes with me and asked me to jump up on the table to examine me, and then lie down to check out my abdomen. After poking around for just a bit, she hit the spot, the spot that when pushed on feels like someone sticking a knife in me and twisting it. Yeah, OK, I walked into that one! But there it was, the spot that causes all the pain and she found it. Although she does not believe it to be lymphoma related, she is ordering a scan to have a look, just to make sure, she does not want to rule anything out at this stage.

She also felt that even though there was a decrease in one of the nodes on my neck, she felt there was a slight increase in size on the ones under my chin and on the side of my jaw. She has also ordered blood work for the follow up visit for the scan results when I get them. The Dr. also informed me that she would be going on a three week sabbatical, and she would put me in the hands of a new oncologist at the cancer center, Dr. Gupta. Dr. Gupta has come to us from the U.S. where she was before us. It was also agreed that I might just be good to have another set of eyes and opinions on my case. I agreed that I would see Dr. Gupta in her absence.

So, folks, that pretty much leaves us where we are now, in a holding pattern waiting on appointment dates. I think I will give diagnostic imaging dept. a call in the morning to go on  a cancellation list, unless of course they are getting me in quickly anyways.

I've also pretty much put out all the information I can for Lymphoma Awareness Day. Hopefully this year we have gotten the attention of the Governments to recognize the urgency for Lymphoma Awareness, and the funding to bring some of these new chemo medications on board and to get out the message to young adults that early detection of symptoms is the key to getting a chance at having Lymphoma treated as a chronic disease much the same a diabetes.
Hope, it's something we have right?

So I leave you with love, hugs and the links to information on Lymphoma. and Lymphoma groups, If you have any to add just email me! thanks,
Tim, xxx

http://lymphoma.ca/
http://www.lymphoma.org/
http://www.lls.org/
http://www.nlm.nih.gov/medlineplus/lymphoma.html
http://www.mayoclinic.org/lymphoma/
http://www.mdanderson.org/patient-and-cancer-information/care-centers-and-clinics/care-centers/lymphoma-myeloma/index.html
https://www.facebook.com/pages/Lymphoma-Resources/116254281762523
https://www.facebook.com/pages/Anas-Younes-MD/119508836687?sk=info
https://www.facebook.com/Hope4Cancer
https://www.facebook.com/groups/thelymphomaniacs/?ref=ts
http://www.cancer.med.umich.edu/news/kaminsk.shtml

Funk Therapy.

I'm in a "funk", just not knowing what to do, how to move on, how to get out of it basically. As you've probably noticed I haven't written on here in a while. I have written just nothing worthy of posting on here till today. I figured maybe writing about not being with it might help get things moving along. It seems to have worked! I'm actually writing something to post. 


Since just before going up north last week I really have not felt well. Having these terrible abdominal pains has had me not in the mood for much these past weeks. I've been to my family doctor twice now and he seems to believe it is bowel issues. I'm not convinced it is, however since I've been back from vacation and went to see him again, he gave me more meds, and these seem to have given me some relief, or is it just coincidence?


I'll take this bit of relief for what it is right now. The week we were up north I spent about forty percent of my time there in bed! Even with that I still had a good time and enjoyed the peace, quiet and tranquility of the lake. The outings we had were enjoyable and really enjoyed the country side up there, including the big bear at the dump! The outing on the lake on the Friday before we left was very enjoyable and the scenery was fantastic.

I had time to reflect on a lot of things while up there and still, just not sure on what direction to take next. I have several things on my plate right now and not sure what to do with most of them. I guess I have to get through this "funk" and then maybe I'll be able to move forward and start to get some of these projects done, some of which are time sensitive. I have not even begun to make my ribbons to hand out for Lymphoma Awareness month! This has been a year tradition for me these past few years, so I guess tomorrow I'll have to get busy with that. Maybe that will get me moving with the other projects as well.

Then there is the health issues. This abdominal thing has my mind going, although these past couple days have been better. I still have to figure which way I am going to move forward with regard to treatment options. That one really has me stuck in the mud. Even though I have had the opinion of four oncologists this year so far, three of which have the same opinion, I still the option of further opinions as well. Do I want to go there? Not sure, not sure if that would be the right move or just put me in a bigger spin. It is something I still have under serious consideration right now. Soon, real soon, I will make my decision on that course of action and finalize which direction to move forward with.

Me and Megan

Brenda with Megan

To move beyond all of that stuff, there has been something that has put a ray of sunshine on everything, and that was the birth of my granddaughter Megan Carol-Lyn Mayer, who was born on Wednesday August 31 2011 at 7:14 pm and weighed in at a whopping 9lbs 3oz and was 21in. She is just adorable. Mommy and baby went home today, after spending an extra night in hospital after it was found she had a little jaundice. All is well and they are home now, Brenda picked them up this morning to take them home.

The weather this past couple days has been hot, humid and unbearable to venture out into. The Harrow Fair is this weekend but not sure I want to spend that much time out in the heat, unless of course it cools down a bit by Sunday. Last Sunday we attended the annual Tecumseh Corn Festival which I have not been to in at least 15 - 20 year ago. Had a blast ran into friends there, just really enjoyed taking it all in, and then of course there was the corn on the cob! Um mm Ummmm, was sweet and delicious!

So overall this year has been great for outings, been a long time since I felt well enough to do all of this. And I have to say the majority of our getaways have been thanks to some wonderful generous friends and family without whom this enjoyable summer would not have happened. Still have one big event to attend, again thanks to the generosity of a long time friend, Brenda and I will be going to see Roger Daltrey perform Tommy and Caesars Windsor next month, can't wait! Two classic rock shows, two Octobers in a row, thanks to the generosity of family and friends! You guys are the best.

So, now that this is something I have finally written and will post, it's time to start moving forward with some ribbon making beginning tomorrow. Writing can be wonderful therapy at times, and thus this blog.

A Plea from Lymphoma Foundation Canada.

 The following is an email I recently received from Sue Robson, Executive Director at Lymphoma Foundation Canada. They need  your help.  

If you reside in Ontario (Canada) and have Follicular Lymphoma (FL) and are currently in need of or could benefit from Rituxan re-treatment, but can't get it because it's not covered in Ontario, then they need to hear your story now.

If this is you or anyone you may know please contact Sue Robson @Lymphoma Foundation Canada. Contact info is below.

Thank You,

Tim, xxx

Dear members, 

We are reaching out to you today to let you know about the inequitable access to care for people living with follicular lymphoma (FL) in Ontario, even after they have been successfully treated.

The issue:

Right now, FL patients who received a treatment called Rituxan plus chemotherapy when they were first diagnosed and who responded well to initial treatment are being denied Rituxan, the standard of care, following a relapse. The only available and publicly-funded treatment option for these patients is chemotherapy – an option that is not equivalent to the standard of care in the rest of the country. Conversely, other FL patients in Ontario who previously received Rituxan alone after diagnosis are eligible for publicly-funded Rituxan again if they relapse.

LFC’s work to date:

Since November 2010, LFC has been actively working with the Ontario government to find a solution to the retreatment issue and its impact on Ontarians living with FL.  To date, there is still no confirmation of next steps, despite positive moves made to improve access to cancer treatments through the province’s new Evidence Building Program (EBP), announced in May.

In the meantime, lack of access to Rituxan retreatment is preventing FL patients in Ontario the opportunity to receive a treatment that increases their chance of living life disease free.  This issue can’t continue to be placed on the backburner and must be addressed by the Ontario government now.

How can YOU help?:

Share your story! If you, or someone you know have FL and have been or are currently being denied treatment with Rituxan in Ontario, we want to hear your story.  For more information, please visit: http://www.lymphoma.ca/rituxan-funding-in-ontario or contact me directly by phone at 1-866-659-5556 ext. 4 or email: sue@lymphoma.ca.

Sincerely,

Sue Robson
Executive Director
Lymphoma Foundation Canada

From The Begining, My Story, Watch & Worry! aka Watch & Wait.

 With this writing I am going to start from the beginning of my journey with cancer. It is my hope to find someone in a similar situation that I can compare notes with. I am gathering as much information as I can, in order to make an informed decision on my treatment options when that time comes. They are limited due to the number of treatments I have already received.


Please be mindful that I am looking for a similar situation, that's important. As you know too much information can be overwhelming, and thus I am looking for people that have had limited options to choose from due to the amount of treatments already received. Thanks.



___________________________________________________________________________________

Brenda and I, June 2011, Birch Lake Mi.

In June of 2006, I noticed and felt a lump on the right side of my neck. Having a neighbor at the park where I had my summer trailer that had recently passed from a cancer that started with a lump on his neck, I was concerned and went to my family Doctor to seek answers.

After seeing several so called "specialists", I'll call them quacks! I finally found an Ear Nose and Throat specialist, who after, like the others, refused to do a needle biopsy, went down my throat with a camera and found a problem. It was not the answer to the problem we were looking for.

This turned out to be a squamous cell carcinoma that was located behind my left vocal chord, this was determined from a biopsy that was performed the 2nd of December 2006. The specialist referred me to the Windsor Regional Cancer Program, where I met with my current Radiation Oncologist.

It was decided that we would do 25 days of radiation on this as it was a pre-stage 1 cancer and he was confident this would be a curative amount of radiation.(which until this day, it has been!). He also did several needle biopsies on the lump on my neck, but all came back inconclusive or negative.

It was near the end of February of 2007, when I developed a second lump, this time on the right side of my neck. I was still in radiation for the Squamous cell carcinoma at the time, and it was determined that I would have a surgical biopsy done to determine for sure what was going on.

After several looks at the pathology slides from the biopsy, by three different pathologists, and three different hospitals, it was determined the I now had a T-Cell Histiocyte Rich Diffuse Large B-Cell non-Hodgkin's lymphoma! Two different cancers at the same time!

I was referred by my Radiation Oncologist to a Medical Oncologist lymphoma being one of her specialties. I ended up going right from ending radiation treatments to starting chemotherapy treatments. First there were many tests and procedures, full body C/T scan, bone marrow biopsy, muga scan, surgery to implant a chemo port, and blood work.

The C/T scan had determined that the NHL that I had was stage IV. There was involvement in the neck, armpit, chest, abdomen and groin areas. The treatment plan was for 8 courses of CHOP-R, it ended up being 9 courses, as we had to eliminate Adriamycin from the first course, because of it's toxicity and having just finished radiation on my throat. I tolerated the high dose CHOP-R relatively well, having only developed neutropenia once, which required a hospital stay of a week on anti biotic to clear it up and get my white cells back up.

I finished up chemotherapy around the end of September of 2007, even though I was happy that I made it through, I was always wondering in the back of my mind if it would come back. Well, that wait was not long! In February of 2008 I was diagnosed with a relapse, this time it was found in my head, neck and lungs.

Here we go again, all the tests and procedures again, including the chemo port, I had just had it removed in December. This time my Medical Oncologist went with the GDP regimen of chemotherapy, again 8 courses, and again ended up being 9 courses, which I will explain why here shortly.

I did not tolerate these rounds of chemo as well, the nausea was frigging terrible. I would have rather been sick every day! OK, maybe not, but that's how I felt some days. This time I also ended up in the hospital for a week again with neutropenia. I again was to finish chemo in September. This time though there was going to be more to it.

This time my Medical Oncologist thought it necessary, having gone through all the chemo I had in the previous year and the resilience of this lymphoma that I undergo a bone marrow transplant. I was also hoped that this would give me a better chance at a long term remission. She referred me to the London Regional Cancer Program at the London Health Sciences Center in London, Ontario. After meeting with the Oncologist there, he recommended that I do one more cycle of GDP while undergoing all the tests and procedures involved with this, as it would most likely take a month to get all of this done before the actual transplant started.

I was once again faced with a battery of tests and procedures, the most frightening of which was another port implant for the aphresis process I was going to have to go through. Brenda and I went up to London around mid/late September of 2008. We met with the Dr. there who went over everything involved with the transplant process and the tests and procedures I would need to proceed. He also went over the odds with me, first time a Dr. had done that to date, and stated as I was, I had only had about a 20% chance at any kind of long term remission. With the transplant he could offer me at best a 50/50 chance at a long term remission or possible cure. Enough said, on with the transplant process!

After undergoing a battery of tests up in London, we returned to Windsor, where I had another port put in to assist with the aphresis and transplant process. I also had to return to London within a couple of weeks to undergo two days of aphresis in order to collect enough stem cells for the transplant. Part of that preparation other than the port was to have daily neupogen shots for five days in a row to boost my white blood cell count, which helps produce stem cells. Can you say bone pain! Part of the side effects of neupogen is bone pain, so, not bad enough that I just went through a single shot every three weeks during chemo, now one every day for five days! To carry on,  on the last day of this neupogen cycle I was to take the final syringe of neupogen with me and head back up to London where they would start the aphresis process and administer the last shot there.

Here we go! Brenda and I arrived very early in the morning at London Health Sciences Centre, and I got booked in and we headed to the area where they do the aphresis process, which is the same area they do the dialysis. I was very scary getting all hooked up to this machine and watching it work. One of the first things they did, was blood work which they drew from one of the lines of the port I just had put in. This was to determine the number of stems cells per so much blood. That would tell them if they were going to get enough stem cells in order to proceed. About an hour and a half later the the results were in!, don't forget this whole time I was hooked up to the aphresis machine and it was doing its job.

Well, the results were not what they expected. There was no way they were going to get enough cells! Now what? They stopped the aphresis process, and told me I'd have to go home, and they would rebook me for another attempt in four weeks. Four weeks!! well, you gotta do what you gotta do. Disappointed?  Yes you can say that. A lot to go through only to have a setback like this.

So packed up our motel room and headed back to Windsor. I have to mention here that this is where the 9th course of chemo came in. It was decided by my Dr.'s in London and Windsor, that with this delay, and the length of time in between, it might be best to have one more course of GDP, and so it was. Five days before heading to London again, my home nurse came in and once more and administered the daily shots of nuepogen to start the process again. Again I took the last shot up with us to London.

Here we go again! Once again Brenda and I headed into the hospital to get booked in and start the aphresis process. Again, first thing up was blood work to test for the number of stem cells in it. They hooked my all up again and fired up the machine and the process was underway again. About an hour later the blood work was back. This time we were told that there was "just barely enough" cells, and the decision was they would continue the process! Yeah!

So, now that the process was under way it was going to be two long days of stem cell collection. You are hooked up to the machine for eight hours each day for two days! Thank goodness each bed, there were three of them in the unit, had their own large t.v's which were mounted from the ceiling for easy viewing. The process was interesting, there were 3 or maybe it was 4 bags, I can't recall, but anyway the machine drew out my blood from one of the two tubes of the port hanging out of my chest and sent it into the machine. As it went through the machine it actually broke my blood down into 3/4 different things, one was stem cells, another was plasma, and not sure what the others were. It then sent what was left back into me through the second tube of the port.

At the end of the first day, after unhooking me, they wanted us to hang around to wait for the final count of cells for the day. Again, not enough cell, and therefore we would not be proceeding with day two, and we were sent over to the London Cancer Center to speak with the Dr. there on how to proceed. Only two attempts at aphresis are allowed, so now that option was out.

My Oncologist at the London centre informed me that we would have to revert to doing the extraction the old way. They would be sending me home, and they would bring me back in three days and extract bone marrow directly from the rear of my pelvic bone. So back to the hotel, pack up, head home to Windsor and then back again in three days!

After a three days, I went back up to London where I had the bone marrow extraction procedure done, in and out same day. When I awoke from the procedure I was informed that they had gotten more than enough bone marrow, and if I wanted to donate some for research, to which I replied absolutely! I was quite sore for a few days. Back to Windsor and then back up to London again in a week.

 Brenda brought me back to London where I was admitted this time for the actual transplant. Once I finally got a room and got settled in they immediately started with the high dose chemo which would take place over two days. I had somewhere around 9-10 bags put into me the first day over 9 hours. Day two was just a couple of bags. Then it was two days of R&R while we waited for the chemo to do it's job and kill pretty much every bad and good cell in my body.

Day 0, or transplant day was December 1 2008. I was informed just before they started the re-infusion of bone marrow/stem cells that they in fact did NOT have enough, but were going to proceed anyway. It seems when the Dr. had told me they had gotten more than enough, they in fact did not have enough! They calculated for an average weight person, those of you who know me, know that I don't come near that! Anyway, when I asked if it was going to affect my outcome the nurse told me no, it would not effect my outcome but would effect my recovery time. We proceeded as scheduled.

The next two weeks after the transplant are two weeks that I would much rather forget, but then again that procedure has probably given me the time I've had up to this moment. It was about day 5 after re-infusion that my counts started to drop. Within days of that the side effects started,  uncontrollable diarrhea began, mouth sores and a sore throat to the point of being on a morphine drip for the pain. Daily stool and urine measurements, it was about 6-7 days before there was a notable increase in my counts.

Of all things the scariest day in there was the day my blood pressure dropped off the scale, I had so many Dr.'s, nurses and such in my room that day, there was not room for another person in there. If my memory serves me correctly it was December 17 or 18th that I was released from London. I had to return in a week for a checkup and it was at that checkup I was released back to the care of my Oncologist back in Windsor.

Once home I pretty much stayed there in order not to compromise my health due to my new immune system. Everything went fairly well from that point until October of 2009 when during a routine check up with my radiation oncologist for my squamous cell carcinoma he I pointed out what I thought was a lump on the right side of my neck. I was to watch it until my next appointment in January unless I noticed any significant changes.

By December of 2009 it had doubled in size so I called him and I got an appointment rather quickly. To be sure the Dr. sent me to my original ENT Dr. in order to schedule a surgical biopsy. The biopsy was done late December 2009 and it was just after New Years January 2010 when I got the results of the biopsy.

I was now diagnosed with a NEW cancer, this time Nodular Lymphocyte Predominate Hodgkin's Lymphoma! What did that mean? Did the transplant fail? Was this new and unrelated? Many question but short answer was, although this was happening again it did not mean the SCT/BMT failed, and this could have been lurking in the background all along. My belief is the transplant failed, but that's just my opinion.

What was next? Next was more radiation. After further tests and scans it was determined that we caught this in a stage one situation and that we could rid it with radiation. Radiation?  I questioned that because from what I know now, you can not radiate the same area twice. If you recall at the beginning of this, I was treated with radiation for the squamous cell carcinoma in my throat. As this was on the side of my neck, there was room to do more radiation for this with minimal overlap from the previous dose of radiation I had. There were risks, increased neuropathy, scarring, however the benefit of this out weighed the risks. So 20 rounds of radiation it was!

Late January 2010 I began my radiation treatments on the node on the left side of my neck. This finished up in March of 2010. Once again all was well, the node shrunk back down to normal, check ups throughout the year. Tiredness once again was the main side effect of the radiation, and swallowing was a little more difficult.

That brings us to my current situation. In November of 2010 I did a follow up C/T scan for my medical oncologist. After a few weeks went by I thought I was in the clear. It's my cancer center's policy not to call unless there is an issue or problem. So, like I said, I thought I was in the clear, however December 17 2010 I was woke up from a nap by my wife Brenda who said my oncologist was on the phone. Never good news when the Dr. herself calls!

Well, I was right! NOT good news. I was informed that I had two lymphnodes in the mediastinal region of my chest  that had slightly increased in size. She said she would be booking me for a bone marrow biopsy as well as an appointment to see a thoracic surgeon to look at doing a surgical biopsy of the lymphnodes in question. She was also booking me an appointment to see my radiation oncologist as well

It was sometime in the next few days I had the bone marrow biopsy done. I seen my radiation oncologist mid January of 2011, he said that should this only be a stage one situation he could do radiation. He also said he would be booking me for a PET/C/T scan to stage me. In the mean time I seen the surgeon and during my consult appointment with him, he informed me the affected nodes were very deep in and near some major vessels, he also stated he would have to "deflate" my left lung to get at them. I had surgery in early February of 2011.

The results of my bone marrow transplant came back negative which was good! However my biopsy results came  back positive for Nodular Lymphocyte Predominate Hodgkin's! It was around mid February of 2011 that I finally got the appointment and went for my PET C/T scan up in London ON. About a week or so after having the scan I got the results. There were approximately  ten nodes that showed cancer activity. They were located throughout, neck, right arm pit, chest, abdomen and there for I was diagnosed as stage 3A NLPH.

So, after further consultation with my medical and radiation oncologists it was determined that as I was still A symptomatic I would do watch and wait. I was given total control over this and told if I wanted to start chemo tomorrow she would start chemo tomorrow. I agreed we should wait and not "burn" that option before I needed it (become B symptomatic, showing symptoms). She also encouraged me to get a second opinion.

I took the advice of getting a second opinion and booked an appointment with a good lymphoma Dr. at Karmanos Cancer Institute in Detroit Michigan. Around the end of February beginning of March 2011 I see the Dr at Karmanos. My files had be sent to him ahead of time and I brought my PET-C/T discs with me as well as previous CD's of my other scans over the past four years. I also made arrangements and obtained my latest pathology slides to bring with me as well.

After reviewing my file, the CD's and the pathology slides the Dr. at Karmanos confirmed I indeed had Hodgkin's this time and it was Nodular Lymphocyte Predominate Stage 3A. He also concurred with my Dr here in Windsor to do the watch and wait and chemo as the treatment when needed. I had also asked about getting in on the SGN-35 trial there. I was was told that I would not be a good candidate for that due to already having moderate to severe CIPN, ( chemo induced peripheral neuropathy), because CIPN is one of the main side effects of the SGN-35 drug. He stated to me that I should have an allogenic stem cell transplant for any hope at all. Exact words were "a transplant is in your future if you want to see fifty five!".

I have made my wishes known to all my Dr's that I will not do another transplant, I feel it is too risky and my Dr also reaffirmed my thought that I would come out of a transplant worse off than I am now pain wise and health wise. She confirm that yes I would come out worse off. However she still sent my file to the Hamilton Group in Hamilton ON. to see if I might be a candidate for a "mini" allogenic transplant. This was done to cover all of my options, even though she knew I did not want to do it.

Just recently I received a call from my medical oncologist again, this time she was calling to say that she had heard back from the Hamilton Group. There conclusion was that I would NOT be a good candidate for a transplant due to many factors, most of important of all that I would not handle the pre-conditioning chemo well, and would be a big risk.

So, this is where I currently stand. I'm still on watch and wait. I have very very limited options for chemo when the time arrives to start chemo. Current options discussed are ABVD and ICE. ABVD would only be considered after many tests to determine if I could handle it. You see, I had CHOP-R in the very beginning for my very first chemo and therefore had my maximum lifetime dose of Adriamycin. However my medical oncologist thinks there may be "room for a little more". So if it comes to that there would have to be tests to see if there is room to do more. There would also have to be some very very careful thought on whether to proceed with that or go with the ICE.

So now it's my decision, when do I pull the trigger and start treatments? Not sure, so back to "Watch and Worry"!