Fighting Mantle Cell Lymphoma(All Posts)

Today was my follow up visit with Dr. Goy, to review the PET/CT results from a week and a half ago (I had meetings last week and couldn't get in for an appt, but Coleen was kind enough to consult with Dr. Goy and she did let me know that he said all was well!).

Great visit, blood counts are coming back. HGB was at 10, PLT's are up, and the whites are doing ok - they seem to be a bit low, but that's written off to coming back from chemo.

I've actually got a bit of a head cold now. It started last Thurs pm, and it's now Mon, and I'm feeling better, have a bit of a cough, but not too bad. Admittedly, I haven't exactly been nursing it, as we were in Atlantic City this past weekend, having quite a good time. I wrote to a buddy, it's actually nice to be 'normal' sick....

Thanks to Alex for arranging the rooms, Omi and Opa, Grandmom and Grandpop for watching the kids, and of course the kids for letting us get away!

We need to schedule the next CT scan for April, and I'll see Dr. Goy a few days later to review, checkup, get blood work, etc. We talked to Dr. Goy about PCR testing, and as usual he was very explanatory, drawing on the exam table paper, showing us how it checks the chromosomes, etc - great stuff! (The nurses on 5PE used to tell me how they loved how he explains things!) The test can help to tell if the cancer is in your blood. The interesting part is that it's one piece of the puzzle, you also need to check to see if it's in your body in other ways - CT, etc. MCL tends to inhabit the gut (stomach, colon, etc) so it's important to check that out along the way. The R HyperCVAD is a great one for this cancer, and we're obviously quite optimistic.

The posts will be slowing down, but thanks for following along, and we'll try to keep you posted with events as they warrant!

Got great news from Coleen yesterday, the PET/CT scans were negative - which is a great word in medical terms. No sign of cancer! We're quite happy as you can imagine.

Blood work was ok, Coleen want's me to get more red, as the HGB was 7.9, still under 8. So I went to RWJ's Cancer Center and got 1 pint today, and I'll get another on Friday. Apparently they don't have a big supply of what I need. I'm O+, but with CMV Negative, Leukoreduced, irradiated, and I think that's it, that adds some complexity. Intereresting, in Hackensack it's usually not an issue getting it - the Cross Type and Matching takes some time, but getting the blood doesn't take that long - I'm sure it has to do with the size of Hackensack vs. Hamilton. RWJ Hamiton has a great facility though, and it's much closer than Hackensack... My HGB was 8.6 today, so it is better, we'll see what it is on Friday.

Quick update - got on the bike on Sun and today for about 35 min each day. Alex, Mom, and Dad got me a cool Polar heart monitor that lets you program in an exercise set. So I have a 10 min warmup, 3 intervals that take me up to around 170bpm, then get me down to 140 as a recovery zone, then a 10 minute cool down at 140-150. Neat stuff - as it really lets you customize your workout and get your heart going as much as you want to. I'm a bit winded doing it now, which is part being out of shape, and part still low blood counts I'm sure.

I went for a CBC test at lunch today, and won't have those results until tomorrow. Regular day in the office, and then home....

Spent the day at the Cancer Center at Robert Wood Johnson in Hamilton, getting 2 units of blood and 1 of Platelets. It's a very nice facility where the outer perimeter infusion chairs face out to a garden, and the inner ones face each other, but it's a very bright airy setting. I took a chair off on the side where I could be on the phone and not bother anyone (hopefully). It wasn't too crowded (only a few of us), so that was good.

I got my blood and felt better. You really don't feel better immediately - only because you really don't feed like there's anything wrong - until you run up a couple flights of stairs, or do something requiring energy! Then you notice the boost when you've got more blood.... I was 6.8 when tested this am, so I needed some HGB.

Also got a big 'ol bag of platelets. Those are funny. Blood comes in pints, platelets come in units. Some bags are small, some large, it's the luck of the draw. I've been at 5.something, and got a small bag, followed by a normal size one. Today I got lucky and got a big one (my platelets were 37, up from 17 on Wed, but still lacking).

Headed home after and onto a normal weekend!

Spent the day at the Cancer Center at Robert Wood Johnson in Hamilton, getting 2 units of blood and 1 of Platelets. It's a very nice facility where the outer perimeter infusion chairs face out to a garden, and the inner ones face each other, but it's a very bright airy setting. I took a chair off on the side where I could be on the phone and not bother anyone (hopefully). It wasn't too crowded (only a few of us), so that was good.

I got my blood and felt better. You really don't feel better immediately - only because you really don't feed like there's anything wrong - until you run up a couple flights of stairs, or do something requiring energy! Then you notice the boost when you've got more blood.... I was 6.8 when tested this am, so I needed some HGB.

Also got a big 'ol bag of platelets. Those are funny. Blood comes in pints, platelets come in units. Some bags are small, some large, it's the luck of the draw. I've been at 5.something, and got a small bag, followed by a normal size one. Today I got lucky and got a big one (my platelets were 37, up from 17 on Wed, but still lacking).

Headed home after and onto a normal weekend!

Got my PET/CT scan today. No results for a few days, and I'll review them with Dr. Goy next week, or the week after.

Stopped by at the doc's office as well to get my blood work, as (1) I'm still not that far out of the 'B' cycle, (2) I've been a bit winded when I don't think I should be, and (3) I was one town over, and they get the results in about 30 minutes as opposed to next day!

HGB wasn't bad - 7.8, but Coleen said that since I'm feeling the way I do, I should get 2 pints. There wasn't time today, so I'll get some locally (saves the hour trip up there!)

PLT's were 17 - not great at all. Explains why the gauze pad filled up quickly after the PET/CT scan when they took the IV out! I'll get a unit of Platelets as well!

WBC's were 4.8 - good stuff. I should be able to ward off the winter bugs!

So, I'll be going to the cancer center at Robert Wood Johnson in Hamilton to get the stuff on Friday. I have mtgs in NYC tomorrow, and since I'm not at critical levels, I'm going to make those and do the blood on Friday.

Doing well! Amazing, ran a 99 degree fever, and just took an hour nap. That seemed to knock it down to 98.8. I had ridden the bike for just over half an hour in the am (161 bpm avg, with a 177 max), so I did feel good, just felt a little tired in the afternoon. This could be from low counts - it is day 8 after all, or the light fever, or whatever, but I really feel good.

I have some mouth pain - doing soup for lunch, etc. Using Sodium Bicarb as a mouthwash, and got some 'magic mouthwash' perscription from the doc. They call it that in the hospital, and the prescription actually says it too! It's actually Lanocane, Benedryl, and Malox mixed together. You rinse with it, and it numbs your mouth a bit, and also helps with the sores that can form after the 'B' cycle. I believe they're related to the methotrexate. I'd gotten them b4, but even though I only have 2 black spots on the inside of my cheeks, my tongue and mouth is pretty sore.

Still getting Neupogen shots, and haven't experienced any bone pain at this time. Still getting blood from the nose (again, not a nosebleed, just bloody discharge when blowing my nose). I'm sure it's from the low platelet count (should have gotten them checked on Friday - so I could have #'s on Mon, but...).

All is well..

Hooray! It’s over!! A big hug for each of us from Dr. Goy that confirmed it!

When cancer strikes a family, it affects your whole family and it takes your family, friends and the best medical staff to get you through it.

On behalf of John and I, we’d like to extend our thanks to all that have been with us throughout the last 7 months. In the beginning of our journey, one of our closest friend’s, Jeff Byrne, said that we had an “A Team.” Jeff, how right you were!!

Eternal thanks to Dr. Goy and Coleen who reassured us that this was “fixable” and the wonderful staff on the 3rd floor over at the Sanzari Building. As John has mentioned in the past, the nursing and medical staff over at 5PE at the Hackensack University Medical Center are, hands down, the BEST around! Quality care, compassion and respect for the patient…you can’t find better anywhere else!

Without the support of our family and friends, this road would have been a rougher ride for us. For your assistance with research, childcare, dinners, work, visits to “Camp Hackensack,” inspiring cards and blog and email messages, taxi trips to Hackensack (at 3am), shoveling snow off the driveway as well as your endless prayers, we give you our heartfelt and eternal thanks. This was all a huge comfort to us to know that we were not in this battle alone.

To all those who are still fighting…..Keep up the fight….Stay strong……Stay Positive!!! We will continue to think of you and send many prayers your way!!!

Had an appt with Dr. Goy today. Regular post-chemo follow-up. All was good - he seemed pleased, I got all 8 cycles in, etc. My counts were ok, HGB @ 7.9, PLT @ 26 (so that was a bit low), didn't get the WBC's - have to check those. So, given that I'm still on the way down (day 5), and the 'B' cycle drops me pretty hard, Coleen (nurse practitioner) opted to give me 2 pints of red, and a unit of platelets. So I spent the afternoon in the infusion room. Chris stayed for a while, and then she went home, and Alex picked me up (THANKS). Alex and I went out for Thai food for dinner after.

For follow-up, I'll have a PET/CT scan next week, and then meet with Goy the week after to discuss. After that, I'll get CT scans every 3 months, and blood work at the same time. If there's anything that pops up, I'll get a PET scan. The CT scan is a broader based scan that will identify more stuff - while the PET scan is more detailed for cancer specifically.

We saw Steven in the waiting room (Stephen a great guy that I met the very first day of treatment in the hospital that has MCL as well). It was funny - we didn't recognize him at first - he has eyebrows, and he dropped off some of the chemo weight (mind you - Steven is thin as it is, so I dind't think he had any weight to lose, but as someone had noted in some newsgroup - there's a 'moon face' associated with chemo - I think it has to do with all the fluids that are pushed into your system). He's doing great, and it was really good to see him (even if we didn't get to see his parents!).

I feel good. The blood should help, as I was feeling a bit winded when doing some stuff around the house. Never sure if it's in my mind, or real, but given the numbers are on the decline, it's probably real. The platelets should help with the clotting of course, and I'm getting some purple coloring on the back of my arms where I'm getting the Neopogen shots.

DONATIONS:
I had some leftover dressing changes and Heparin, etc from my Hickman, and we asked the doc's office if there was something we could do with them. Sure enough, they were happy to take them, as there are poeple that don't have insurance, or insurance that's not so good, and they will pass the items on to those folks. Kristen, the nurse that gave me the blood - and whom I gave the items to, said she had a woman in yesterday that fit the bill - she would be extremely happy to provide this to her. So - if you have extra stuff - don't toss it, give it to your local oncologist and see if you can help someone.

Another great day, church, take down the outdoor lights, a little clean up outside (with Emily's help), lunch, around the block with the kids for a scooter ride, and then a bike ride to the park. Had a fire in the fireplace, etc. etc. - just a great day - a great weekend!

The number of posts will diminish at this point. I'll document the after effects of the last treatment, as I'm very curious to see how this will end up - with a fever or not specifically.

I know my numbers will drop, the 'B' cycle will knock my WBC, HGB, and PLT's down. I already have some light bloody nose spray - it's not a bloody nose, just when I blow, there's some color there - standard post 'B', as the PLT's drop I assume.

I feel great, went with John to a B-day party today (he got to ride a pony!), we cleaned carpets at night - thanks Alex, did some post Christmas clean-up, etc. Just a good day. Still have the normal, don't know what I want to eat, feel real bloated, a little nauseas not and then post chemo blahs, but overall I feel awesome.

We all slept in the basement - sleepover of sorts - as we wanted the carpets to dry fully, and wanted to have some fun with it!

Liking being at home...

Should be getting out today. Numbers look good. Methotrexate was .04 (has to be .08 to be released, but they also want you to have 4 or so doses of Leucovorin, and I'm only on like 3 - they also want a 48 hour reading, which would be around 1pm today - they can defer that or...).

Feel good, looking forward to release, but I have a day's worth of meetings to attend, so a later release would actually work better. Last one is 3pm, so that could time out well. Alex has offered a ride, and I'm looking forward to Pizza tonight.

Appettite is dropping, had the roast pork for dinner last night, had one little bite, and it just didn't do anything for me. Went to the vending machine and had a bag of fritos - the salt seems to do the trick! Some water, etc.

Finished up chemo early this am (hooked it up around 2:30am). Methotrexate levels were at .04, so that's good enough to go home (they want under .08). Need more Leucovorin at home, but that's fine (they want 8 15mg treatments). Got somore more fluids, got my triple lumen removed - no pain whatsoever there, and Alex came to get me around 4pm.

Said my goodbye's to the excellent nursing staff. Bittersweat - don't come back except for pleasure visits was the basic theme. Apparently (can't remember if I've typed this b4), many patients don't come back for visits, and I'm sure it's because of the treatment/memory. However, I would like to stop by with some donuts, coffee, see how the wonderful people that helped me through this are doing. The lack of visits often only leaves the nurses seeing those that come back for bad news, not those that are doing well. They'd like to see the good stories too! So, I plan on doing some of that!

Came home to balloons on the porch, and a great poster made by the kids and Mom! Really nice. We had pizza (my choice), and a great cake - make by the kids and decorated by mom - with Congratulations John on it! My Mom was over too - Dad's fighting a cold and didn't want to subject me to it.

So, today ends my chemo treatment for MCL. During the next week I'll monitor blood levels (where I expect my WBC's, HGB's, and PLT's to drop), and I'm hoping I won't fever, as due to the lack of catheter, there's apparently less chance of that happening. You can drop the WBC's etc, and still not get an infection - so that would be fine - a simple trip to get some blood, etc - without an overnight stay w/b nice!

After that, I'll need a follow-up PET/CT scan, and then those every 3 months or so, and blood work weekly I believe. I'll work out more of the details with the good Dr. when I see him on Wed.

For now, I'm very happy to be done, extremely happy to be home with the family, and very grateful to everyone reading this, everyone that's provided wishes, hopes, prayers, thoughts, visits, and any possible good will towards our family. It's been quite a journey, and I'll paraphrase Steve Meyer (note posted on 'Personal Notes'), I wouldn't wish it on anyone, but it's been an amazing experience. Hard to verbalize.

I/We can't begin to thank everyone for their help, but please know that without the support of our family and friends I can't imagine going through this as we did.

Good night sleep, was really tired by day's end yesterday. Not great sleep the night b4, and a long day. Was just wiped. Couldn't even sneak in a bike ride! Will get one today. Feel good, Creatine is at 1.0, PH is at 8, so the numbers look good. I'll get my weekly CBC summary at the end, I feel fine. Still expecting to be back here about 6-7 days out for neutropenia, but without the hickman and any infection that may have brought on, I'm not sure if I'll need antibiotics, ect. The neutropenia cold just have me here for low counts, get some blood and platelets, and no infection - just being wary of getting an infection (with my usual WBC's of 200 at that point). We'll see....

Good day of work scheduled, and hopefully a bike ride - rather - will be a bike ride!

Got on the bike, good ride - tried out the new heart monitor using the interval function. Pretty cool - makes you do a warm up, do a predetermined interval level - where you get your heart rate to a level for 5 minutes (you set the level and time), and then you recover (i chose to recover to a heart rate), then 2 more intervals and recovery, then a cool down. Was about 45 minutes all together. Felt good. Plottted it on a graph (part of the software).

Another good night's sleep. Got to bed around 12:30, a couple of bio breaks, a better bloodletting - didn't seem to be as invasive and I managed to stay asleep or semi-comatose through most of it. It was the weigh-in that's annoying - you have to get out of bed! But back to sleep after that. Up around 7am to check in with the family and start the day!

Pete and Chris came by for a short visit (I had a bunch of conf calls, and they had to get John from school and off to playtime. Great to see Pete, who has better blood counts than I do (when I'm in perfect health)! Chris brought me a care package from my Mom, some veal, and potatoes, and banana bread.... And that's after Chris's care package of Chicken Picata (sp?), rice, asparagus, and pecan pie! AND - hospital food isn't bad - it's just, what would you eat??!! I'll be doing the bike later tonight, after some work, and maybe a nap. After the ride I'll have dinner.

Ok, the schedule got a little mixed up. I pushed work longer than expected, usually happens, and then forgot that Andy was coming up for a visit around 5pm. Sure enough, righ on queue! Many thanks for coming up, great to catch up and clear up my decision on which heart rate monitor and headlight to go with (cycling talk). Andy was kind and hung around until darn near 9, so I grabbed a meal after that (Mom's veal chops and taters and banana bread - nice...), and then ditched the ride, as I was pretty beat and wanted to wrap up some other stuff, and then was really wiped out and went to bed around 11:30.

Medical
I got my morning checkover by my nurse and my Creatine and Bun are a borderline right now. They're impacted by the chemo, and they impact Kidney function so they check that closely - along with PH, which was 6 again, so 2 more sodium bicarb pills. They also increased my fluids last night (so that should help), and my fluid output has been good. Erin was saying they've been noticing higher Creatine and Bun numbers on the floor in general, and they're keeping an eye on it. It could cause the chemo to be stopped for a bit and then restarted. Not sure how long of a break - she was just giving me an overview, and not trying to scare me! Hopefully I'll see Goy today and talk to him about that. I haven't been tracking those numbers closely so I don't know what I've been historically.

PH is doing better - up to 8 now - good stuff! 3pm

Creatine is down to 1.1 now (from 1.3, was .9 when I came in, 1.5 is the high point where they start talking with docs - about suspending chemo), fluids are being pumped through, so that's good! Chemo is continuing!

Good night's sleep, up few times for bio trips; they pump you full of sodium bicarb during the Methotrexate admin. Even with that, they check your PH regularly, and I'm getting additional sodium bicarb pills. PH was 6 at last check. Then at 4am the overhead light came on for the blood draw. That's no fun! This is where I miss Denise who does the blood draw by light of a flashlight - sometimes you don't even wake up... (The blood's drawn from the catheter line - this time the triple lumen, previously the hickman.)

Good day working, bunch of conf calls, etc. Got on the bike for the first time in a while again. Did 25 minutes at an avergage of 168, max of 175. Maybe a bit much, but I felt fine, wasn't breathing too heavy, and I tried to knock it down a bit, but it kept up there pretty high. Part low HGB, part out of shape. I got a great new heart monitor for Christmas from Alex and my parents, so I'll program in an interval workout to try that out - that way it'll force me to keep to a reasonale level (I'll have to figure out what reasonable is!).

Last week of treatment... Talking to some of the nurses about that, and Gabby was saying that many patients don't even come back to visit, and the nurses wish they would. Me, at this point, when coming to see Dr. Goy, I'd like to visit, just to say hi. I don't think I'll have an aversion to this place, but I'm sure many do. The people here have been great, and it would be nice just to check in to see how they're doing. We'll see...

Checked into Camp Hackensack today (or my summer home, or whatever euphamism you want to give it!). We brought up a cheese/pepperoni/keilbasa/cracker platter for the nurses. They were really appreciative, and it was nice to give them something. Chris has made cinnamon bread before, but this was certainly a little bigger. They're a great group and it's nice to give a little something back. We're certainly not alone in that feeling - they've had so much food since prior to the holidays - the station where they keep it - right by the patient fridge - has been filled with cookies, fruit baskets, donuts, the works - since before Chrstmas. A testament to them.

Got checked in - nice window bed - looking out to the city (NYC) - nice for the last round! Got my triple lumen installed by Dr. Kline - she's awesome. GREAT bedside personality, and a good touch. The triple is a bedside procedure, confirmed by an Xray they do at your bedside - to make sure the line is in the vein properly. It's not really painful, but there is some pressure, and some weird discomfort as they push it into your chest. Gabby (nurse) was there to offer a hand to squeeze - it does help!

Pics of the triple lumen (and the marks from where the Hickman used to be):

They told me Steven checked out yesterday - he just finished round 7. They said he looked great and sent his regards. Steven, if your reading - glad to hear you're going for 8. Not that I want you to have more of this stuff - but I've always said I think I want to take as much as I can - to make sure I kick this. Likewise for you... Hope all is well with you, and a Happy New Year to you, Murray, Barbara, and the rest of your family!

I'm getting fluids now (3pm), and I'll get Rituxan as soon as it comes up. First a little benadryl, so maybe a nap around then. Chris headed back home, and Grandmom had taken the kids to see 'Cheaper By the Dozen 2' - so I'm sure that was a good time for everyone! (Thanks Grandmom!) Not sure if Uncle Alex went along or not....

Great HGB counts today - 10.5 - I can't remember when they were that high! No wonder I felt so good this past week!

FWIW, we saw about 11 NJ State Troopers with lights on today - having stopped cars along the NJTP. Half marked, half unmarked. Definitely out in force! (Vance J, I'm glad you're doing the managment/leadership stuff now, that TP stuff seems a wee bit risky!)

HAPPY NEW YEAR!!

Nice day at home. Actualy, Alex, myself, and the kids went out to a park to fly (1) a stomp rocket, (2) a pump up rocket, and (3) an air powered plane.

The stomp rocket is a simple setup with a plastic/rubber bladder that you step on that pushes air to a lunch pad to launch a plastic/foam rocket. A good step can get you about 150 ft.

The pump rocket is made by Estes (the model rocket company), and you hand pump air to a resevoir, and a guage let's you know when to stop - or where you are on a scale. A more elaborate plastic/foam rocket sits on the launch pad. That one goes up at least 200-250ft (they say it can do 300ft). (Safety feature - you can't tilt the rocket to aim it anywhere but pretty much strait up. So you can't aim it at your brother. Not that you would of course. You can aim the stomp rocket, but it doesn't have as much force.)

The air powered airplane is cool - it's a see through plastic plane, where the fuselage acts as the bladder, and there's a single piston 'engine' that receives the air pressure, and spins the prop. You pump it up with a small bicycle type pump (special for the plane). The wings and rudder are foam. This thing had to fly for about 300 ft. We had some wind, so we flew it into the wind, where it climbed, and then did a slow turn around to fly with the wind, and flew for a nice distance.

That, some playing on the swings, and some Razor Scootering by the kids and we had a nice time outside! Thanks for coming out Uncle Alex!

A pretty relaxing rest of the day, some shopping, etc (got 75% off of Christmas lights at Target - amazing - $2 for nice lights..).