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.
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| 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"!
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.
