Andy's Lymphoma Log
Website on Follicular Lymphoma
Website on R-CVP chemo cocktail
Info from Dr. Walker - Follicular Lymphoma International Prognostic Index (I am a 1)
June - September 2008: Swollen lymph nodes that would not go away. Primarily located in neck and base of skull. Sent for numerous blood tests and X-rays that didn't raise any red flags. Lost some weight and could not gain it back.
October 2008: Large, hard, painless lymph node appeared under left side of jaw about the size of a large grape. Wicked night sweats start. More blood tests revealed nothing.
Late November 2008: More lymph nodes swelling around the neck accompanied by much fatigue. Placed on waiting list to see haematologist.
December 23rd, 2008: Enormous lump appears in left groin. Over 48 hours it becomes the size of a chicken's egg. It later proves to be a lymph node.
January 5th, 2009: Showed chicken's egg to Dr. Nash (Family Doctor). Pushed to the top of the haematologist's waiting list.
January 13th, 2009: 9 am appointment with Dr. Walker (Haematologist). Was examined, then sent for blood tests, X-rays, ultra-sound and finally, at 4 pm was triaged by a general surgeon in preparation for removal and biopsy of the groin lump.
January 16th, 2009: Groin biopsy performed by Dr. Kelly, who removed a lymph node the size of a large plum. Four internal stitches and 6 external.
January 20th, 2009: Received a phone call from Dr Walker at 9pm informing me that I have aggressive Non-Hodgkin's Lymphoma - Stage 3, diffuse large B cell. More tests are needed to complete the diagnosis.
January 22nd, 2009: Bone marrow biopsy and CT scan.
January 23rd, 2009: Phone call from Dr Walker. Diagnosis changed from large B cell to follicular B cell - alters chemo regime/cocktail. Saw my naturopath who recommended some relatively easy things to do to help get me through this.
January 26th, 2009: Last day at work for several months. My boss was brilliant and told me to focus on getting well rather than on work. Was looking at cancer stats; in Canada 9 people are diagnosed with NHL each day. Don't feel quite so special anymore............... Chemo starts tomorrow.
January 27th, 2009: Two hours of orientation, an IV line was introduced. Pre-meds (Benadryl, Tylenol) administered over 45 mins then started Rituxan (actually not a chemo drug but an antibody that targets the tumours and flags them for the chemo). After about 45 minutes, I reacted to it with shakes and sweats (not too unusual as most people react to it mildly the first time). Rituxan was stopped and saline flushed into me to give my body time to adjust. Rituxan restarted but after 15 mins I reacted again, this time with shakes, sweats, itchy ear drums and a tight chest. Dr Walker came and checked on me and we stopped the Rituxan and did another round of premeds. Given oxygen to ease tight chest and Rituxan restarted at very slow rate - fortunately no further reactions. Due to the slow dosage rate they had to move me out of day-care when it closed and into a room at the back with the in-patients. Took 9 hours from start to finish (released at 8pm) so the chemo drugs have been held over to tomorrow to allow me to recover a bit.
January 28th, 2009: Went back to the clinic for the chemo part of the treatment. First a new IV had to be installed then I received an anti-nausea drug. The first chemo drug was a push which meant it was introduced manually via a syringe. The second was a drip. About 3/4 of the way through I felt a little spacey so the nurses got me horizontal, fed me apple juice and a Boost. Once the drug was finished they "flushed" me with saline for 1/2 hour by which time I was feeling well enough to leave.
Sylvie removed my groin stitches and then it was off home. The final chemo drug is in tablet form that has to be taken over the next 5 days.
January 30th, 2009: I have 3 main modes right now; asleep, conscious and eating. I have been watched over by some excellent "Andy-sitters".
January 31st, 2009: Managed a 5 minute walk around the block this morning with Huguette. It was great to get some fresh air but was exhausted upon our return. Experienced a lot of jaw pain today. I have a lot of infected lymph nodes in that area so I'm hoping the pain is associated with these cancer cells being duffed up by the chemo. My groin incision is healing nicely.
February 2nd, 2009: Each dose of chemo kills only a percentage of cancer cells which is why chemo is given in multiple doses. Also the effect is somewhat exponential with the most cancer cells killed during the first treatment; it gets harder and harder to kill the remaining cells. With all this in mind there is some good news today. The grape-sized lump on my jaw has visibly shrunk! Very early days and still a long way to go but at least the cancer seems to be chemo sensitive rather than chemo resistant.
February 3rd, 2009: Hard to believe that my diagnosis was only 2 weeks ago and chemo started only 1 week ago - so much has been crammed into the last 14 days. Have a little bit more energy today which will, hopefully, continue over the next few days. Next chemo cycle starts February 17th which means that the 6th (and hopefully last) cycle will end June 2nd. Seems an awful long way away.
February 7th, 2009: Have managed to shuffle around the block with the aid of poles and a chaperone for several days now. Was "released" from isolation today. Took a trip to the car wash, a walk around Canadian Tire and went to a movie where I wore a mask and was the subject of several strange looks. Wait until I lose my hair - that will give people something to look at. Felt good to be out and about even if the trips ended with me having to have a nap.
February 9th, 2009: Feeling almost human again. I have managed to ride my bike (inside on the trainer) for a few minutes the last couple of days along with a few minutes of Bowflex and my naps have been reduced to only a couple of hours each day. We are beginning to understand the chemo cycle a little better. First you get zapped. Then for the next 7 - 10 days you feel progressively worse each day as the side effects are greatest at this point. After that point you start to feel better and I am hoping that the last 6 days I feel well enough to rebuild some strength.
February 10th, 2009: Yay! Two weeks down, 16 to go! Found out an interesting tidbit as to why there are over 30 different types of NHL. Lymphocytes (white blood cells) start as immature stem cells and go through many intermediate stages before they become mature lymphocytes that actually function as your immune system. If a problem occurs at any of the intermediate stages, it can cause lymphoma. Whichever stage the problem occurs in determines the type of lymphoma.
February 12th, 2009: The great shed of 2009 has begun. With my thick head of hair you can't tell by looking at me, but you can definitely see it in the bathtub after I shower.
February 17th, 2009: The second session of chemo today went better than the first. Unfortunately, because of the stat holiday yesterday, everything was backed up so I did not actually get hooked up with an IV until 11:50 instead of the scheduled 9:45. Finished all the drugs by 6:10 and so was home at a reasonable time. As I am used to frequent naps during the day, it was hard to stay upright. Firstly, I had a nap in the waiting room and then, when I did get into Medical Day-Care, Heather managed to snag me the only bed in the room. This was great as I could sleep and H could stay with me sitting or laying on the bed. About mid afternoon my blood pressure got super low, 86 over 43. Was ordered by the nurse not to get up and the IV was slowed down. Saw Dr. Walker and he was very encouraged by my overall progress and said that if this keeps continuing then I might not need the full 6 cycles. Excellent news but we are trying not to get our hopes up too much.
February 24th, 2009: My taste buds have given up the battle; everything now tastes of cardboard. The last couple of days I managed to go without naps, however, today the "7 to 10 days after chemo" maximum side-effects hit big-time. It is as though all my blood has turned to lead, my limbs feel so heavy, as well as my eyelids. Just have to ride out the next few days and then things should start getting better.
February 28th, 2009: Have more energy and am now on the upswing so will try to make the most of the next 10 days. Lost another pound - that makes 4lbs since the beginning of chemo on top of the 15 I lost prior to diagnosis. We have instituted a high fat diet and a "4 meals a day" strategy to try to stop the loss. My remaining hair is really bugging me. Its length is about that of a 5 day beard and, as such, it prickles me every time anything comes in contact with my head. My scalp is so very itchy and now covered in red bumps. I have solicited advice from a fellow "baldy" on the best way to go forward to try to alleviate this issue.
March 1st, 2009: Have been to two social engagements in two days - now that is living! Seriously though, it was very nice to be out with people that I had not seen in several weeks and be able to discuss things other than cancer.
March 4th, 2009: Have had an awesome couple of days. Only needed a couple hours of naps each day and have had enough energy to complete some tasks around the house as well as swing some weights around and cycle 5km. On the downside, my scalp has broken out so I am one giant puss-head. Heather is doing a grand job trying to keep them under control, using several strategies.
March 9th, 2009: For the first time I am in two minds about the upcoming chemo. The rational side of me knows that more chemo means more cancer cells will die, but the emotional side does not want to be totally out of commission for the next 10 days.
March 10th, 2009: An interesting day. My blood work this morning showed that my white cell count was low (1.5 "neutrophils" when the minimum is 2). It if is too low then they postpone chemo, however, in my case we decided to go ahead, but to also start administering "Neupogen", which stimulates the bone marrow to super produce white blood cells. This is a daily injection for 10 days at a cost of, wait for it.......$200 per dose.....so $2,000 - thank goodness for employment health benefits! Neupogen should help prevent my already low white blood cell count from crashing further over the next few days leading to possible infections (and hospitalization). As I still have a croaky voice, the doctor discontinued the Vincristine part of the chemo as we do not want any permanent damage to the vocal cords and the chemo seems to be doing a great job. After much waiting, the IV was eventually inserted at 11:45 and the meds started (in our own little private room just up from the Medical Day-Care). I reacted to the Rituxan again (throbbing head, tight chest and hot) so the drip was stopped and more premeds were given (see below, 2nd row on the left). After that they maintained a slow drip rate to prevent any further reactions and because my blood pressure also got very low again. The rest of the day went without any further incidents, although I was the last one to leave, yet again. I am booked to have a CT scan a couple of days before my next appointment so see how the internal lymph nodes are doing. The outcome of this test will determine how much more treatment I will need. Whenever I do finish treatment I will be put on the Rituxan maintenance program which is a dose of Rituxan every three months for 2 years. This is meant to help prolong remission. Checked with Olga (one of the fantastic nurses) about my irritating hair and the breakouts over my scalp. She recommended shaving it all off to help stop the breakouts. I'm happy with this plan as it should be far less irritating and will eliminate the ugly patchiness (see below, 2nd row on the right). I'm going to try to do this tonight so stay tuned.
March 11th, 2009: Heather has just done a wonderful job of giving me my first Neupogen injection - my body is now worth $200 more than it was a few minutes ago. Heather says that Adele (Dr Walker's awesome assistant) gave her great instructions on how to do this, which helped a lot. Last night we shaved off what little remaining hair I had and I can't believe we did not do this earlier. I am not getting prickled by my own hair, my scalp is not nearly so sore and the breakouts have almost totally cleared up within the first 24 hours. It is, however, somewhat less pleasant to run my hands over my "5 o'clock shadow". Below is a montage of the "de-evolution" of my hair.
March 14th, 2009: It has been a roller coaster ride for the last couple of days, oscillating from profound exhaustion and nausea to feeling well enough to sit and play a board game with an "Andy-sitter", to being dizzy and so nauseas that I had to hang my head over a bucket for what felt like an eternity. The nausea has lessened today but I am still taking it easy on the food intake as I don't want to push things. As it was such a nice day, Heather took me for a drive into some countryside and we sat on a bench in the sunshine listening to a close-by waterfall. The outing was enough to send me straight to bed upon our return but it was very nice to be outside for a bit. Spring is certainly coming and I'm looking forward to when I can sit out on our deck and take in the sunshine.
March 19th, 2009: Yesterday was Day 8 of Round 3 and I spent close to 23 hours of it in bed horizontal. I even ate lunch and dinner in bed I was so exhausted. Only a couple more days of this and then I will start to feel better. My official weight is now 105 lbs having lost a total of 20lbs so when I start feeling better I can focus on fattening up. I also seem to have regained about 25% of my taste so eating is much more fun these days.
March 24th, 2009: After a couple of days of feeling relatively energetic, today I am back to feeling like it is day 7. No energy at all and I'm sure my blood has turned to sludge in my veins. On a brighter note, my non-stop eating of the last few days has resulted in me gaining 2lbs.
March 27th, 2009: An interesting day. Went first to the chiro so Heather could get somewhat straightened after she was rear-ended yesterday. Next it was to the hospital for blood work and a CT scan. My blood work showed that my white blood cell count has risen to slightly above the minimum threshold so I can now be released from strict isolation. For the CT scan I had to drink 1 litre of irradiated water and then during the scan had a contrast dye injected. Got home around noon, had some lunch, and didn't feel too exhausted from the morning's excursions. However, early afternoon I started to feel really lousy, as if I had the flu (aches and pains throughout my body and bad headache). I did not manage to eat or drink much (only apple sauce and jelly/jello) as my stomach was upset, so was unable to flush the irradiation quickly from my system (which is what we think is making me feel lousy). We have been monitoring my temperature throughout the evening which is slightly elevated although not quite high enough to warrant being rushed to the hospital. We will see what tomorrow brings.
March 31st, 2009: Took around 24 hours to get over the reaction to the CT Scan drugs from Friday. Overall, I have had more reactions this chemo cycle than before and have certainly not recovered as much as previously, so the upcoming 4th chemo cycle was due to knock me flat today. Had another blood test today and saw Dr Walker. Great news - I don't have to have any more chemo as the CT scan shows that my lymph nodes have returned to a normal size. At this point, more chemo would only weaken me further with no discernable effect on the lymph nodes. We can never be certain that these nodes do not contain cancer as that would mean biopsying every single one, but Dr. Walker is confident that I'll have a lengthy remission. My blood work showed that my white blood cell count has tanked again, which might be due to the CT drug reaction, but this should slowly recover along with my weight, hair and energy. The plan now is to have a physical and Rituxan in 3 months time, a CT Scan and Rituxan in 6 month, and so on for the next couple of years. Interestingly, I am somewhat of a "CT blob" and my images are hard to read. On a CT Scan fat shows up as black and, because it surrounds the organs, it helps to demarcate them. I do not have enough fat on me right now so all my organs appear blobbed together.
The good news has yet to really sink in with us - we are not bouncing off the walls with joy right now (which I am sure will come in the next few days) but it is such a weight removed from our shoulders.
April 4th, 2009: It is still very hard for me to accept that I am in remission because I still feel the way I did last week and the week before that - little energy, sleeping extra through the day and no stamina. So I have decided that I am in the "recovery" stage and that when I have recovered then I am in "remission". May sound pedantic but mentally it helps me to reconcile that the recovery process is not going to happen overnight and that I am allowed to still feel cruddy.
April 21st, 2009: Today would have been chemo #5 which means that it has been 3 weeks since I officially finished cycle 3 and I'm feeling pretty good. I still sleep ~ 12 hours each day but when I am awake I feel better and have more energy than the week before. It isn't noticeable day by day but certainly week by week. I am also managing to do an hour of work each day (have my company laptop at home) and am getting out into the back yard for some sunshine. I still pay for over-exertion but am beginning to get better at pacing myself. So, all in all, life is good.
April 27th, 2009: A strange coincidence happened on the weekend when we were staying at the Sheraton Fallsview Hotel. They were hosting a conference (as many hotels do), only this conference was on CLL (Chronic Lymphocytic Leukemia) and there were about 100 haematologists present (unfortunately Dr Walker was not attending) so there were plenty of specialists to call upon should I have needed to.
Although it has been a couple of months since I lost my hair, I still get a shock when I see my reflection. It is hard to explain but here is my theory. I have got used to the feeling of no hair so it no longer feels different and, because I don't feel any difference, I guess the brain is programmed over the last 39 years to see hair - hence my shock at not having any. Anyway, because I lost only ~ 80% of my hair, the remaining 20% has continued to grow. As it was very patchy, it looked and felt awful so I have been keeping my chrome dome shaved. However, I have decided that today is the last shaving day and I will let whatever can grow grow and we will see what mess materializes.
June 8th, 2009: Somewhat surprisingly my hair has grown back thick and evenly, although much greyer than before it departed. It is approximately 1.5 cm in length and from that I have calculated that it will take until around Christmas for me to have grown my hair back to its original length. I am also now 110lbs so am back to my pre-chemo weight. Only another 15lbs to try to pack on so my clothes fit again.
June 23rd, 2009: Had my three month check-up today. The exam went fine, so much so that the CT scan that was supposed to happen at the next 3-month check-up has been pushed out. However, my blood work showed that my white cell count is the lowest it has ever been so we are awaiting info from the doctor as to how this will affect my commuting to and from work. Started the Rituxan IV and once again, while most people can have their Rituxan within 1.5 hours, mine took 6 because I reacted to it. This time I had Benalyn pushed instead of through a drip. This way it worked faster to counteract the reaction, however, it did make me feel rather strange as it rushed through my system. After doing some extensive research over the last couple months, I implemented a regime when we returned home to gain the maximum benefit from the Rituxan. I went for a brisk 25 minute walk to help get the drug into all of my tiny capillaries. Then I sat in a bath as hot as I could get it for 50 mins and managed to raise my core temperature by 1.7oC, also to help the drug reach all the many little blood vessels. So far everything is fine and I'm hoping that this maintenance treatment does not set back my energy levels.
July 6th, 2009: Started back to work today - just mornings for now until I build up my strength. Arrived home at noon exhausted, had a 3 hour nap in the afternoon plus was in bed by 9 pm. This is going to take some adjustment. My hair is now long enough to establish that most of it is coming in not exactly curly but wavy, except for the sides. Not quite sure what to do with it or how the style will develop but it is kind of fun. Heather's just happy to be able to get a grip on it again.
August 31st, 2009: My hair is growing back in nice and wavy\curly. Sometimes it forms ripples that women in the 1920's would have killed for. For now I am just letting it grow and am enjoying the curls as they probably wont last that long. A decent style can wait.
I am now up to 6 hours of work each day but still have an hour nap upon arriving home. Still driving in to avoid public transport but other than that things are getting back to normal work-wise. Had a bit of a scare the other day. I sometimes react to mosquito bites and get a swollen lump about the size of a loonie for a couple of days. The bite I received the other day continued to swell up to 7cm in diameter. I marked the perimeter of it with pen to observe how fast it was growing. It was very red (the picture does not do it justice) and hot to the touch, however, a few doses of anti-histamines, a couple of days and everything is back to normal.
22nd September, 2009: Had my sixth month check up yesterday and everything is A-OK. It was another long day with Dr Walker being stretched by his usual patient load as well as being on call. Had my blood taken at 8am but didn't get to see Dr Walker until 10:30. He checked me out and couldn't find any swollen lymph nodes which is great. While my blood levels are all low they are better than last time so things are headed in the right direction. Didn't have to wait for a chair in the Medical Day Care and they had saved my favourite one for me. We kept the Rituxan delivery rate low and I only had a very minor reaction early afternoon which was solved by a few minutes off the drug followed by restarting it at a reduced rate. After that it was such plain sailing that I managed to sleep for about 1 hour. Was released at 5pm and, guess what, I wasn't the last one to leave!
At home I did 15 minutes on the stepper followed by a steaming hot bath where I managed to raise my core temperature by 1.4C. Feeling good - long may it continue.
18th November, 2009: I had a cold in early October that knocked me down more than it would have previously. However, the cold seemed to have kick started something inside of me because since then I have recovered my energy and stamina. I am feeling 95% healthy and now just need to get into some serious exercise.
On another note, my hair just keeps growing and getting more out of control. A serious cut was overdue, just over a year since my previous one. The pictures below show my hair at full puffiness just before it was tamed.
7th January, 2010: Two days ago I had the most non-eventful and boring day at the hospital yet - which is a good thing. I feel better than I have for the past 3 years, no lumps, clean bill of health from Dr Walker and I didn't react to the Rituxan for the first time ever. Hard to believe that it is still a couple of weeks off from being one year since my diagnosis and here I am 9 months into remission. Also, I am finally (with Heather's help) getting a handle on how to manage my hair so it doesn't look like the above. Life is good.
20th January, 2010: Today is exactly 1 year since my diagnosis. What a difference between now and this time last year - then the future was uncertain, now the future stretches ahead. I am definitely not the same person I was 12 months ago; I like to think that I have grown and become a better person but that is open for debate. :-)
31st March, 2010: Today is my 1 year remission anniversary - hurrah! Yesterday I had my 4th Rituxan maintenance session. This time I went alone because H had to attend a conference in Toronto. My blood work was good - every count was up and I am now above minimum levels for some of the components. Dr Walker gave me the all clear to go to Nepal (not sure what I would have done if he hadn't) and then it was on to the Medical Day Care for the drugs. Everything went well there, no reactions and H and I managed to keep in touch texting. Once home I cycled 10km and then had the obligatory hot bath to maximize the treatment.
29th June, 2010: Rituxan maintenance # 5 and the last one at McMaster University Medical Centre. In August the haematological unit is being moved up to the Juravinski Cancer Centre at the Henderson Hospital - purpose built area, new equipment, etc - should be great. Clean bill of health from Dr. Walker and the shortest waiting time ever. I was sitting in my favourite treatment chair in the Medical Day Care by 10:15 and was already thinking of all the extra things I could do at home once I got out of there early. There weren't many patients so within 5 minutes of sitting down I had the IV line in and the premeds started. The Benadryl is now given in a tablet form rather than an IV. Apparently it is the new protocol which cuts down treatment time (45 minutes of IV time) and is less of a shock to the body. Then I waited, and waited, and waited. The pharmacy took ages to make the Rituxan and then it took even longer to get a runner to bring it upstairs.
I had a lovely surprise at lunchtime when in walked Heather for a brief visit. Eventually at 1:10 the Rituxan was started, then Heather felt she was able to leave and return to work. We ran the standard speed protocol for me but my blood pressure still dropped significantly. I dozed most of the afternoon and felt pretty cruddy. When the Rituxan was done my blood pressure was still too low for me to drive home so the nurses pushed saline into me at a fast rate and after 45 minutes I felt much better and my blood pressure had risen so I was cleared to drive home. Once again I was the last out of the Day Care. When I got home I felt pretty lousy, so Heather did a trip to "Spices" (Indian food) for me for my dinner. After that we forced me on a walk around several blocks and I did the obligatory hot bath. After that I just curled up in bed. I woke up the next day still feeling pretty rough but had to go into work because of several important meetings. By the end of the day I felt better and so life goes on.