Non-hodgkin's Lymphoma Support Group
Non-Hodgkin lymphoma is a type of cancer arising from lymphocytes, a type of white blood cells. It is so called because of its distinction from Hodgkin's disease, a particular subtype of lymphoma. It is in fact an overarching term of many different forms of lymphoma, each with individual characteristics. Most cases start with infiltration of lymph nodes, but specific...
DaveVA
Since I found Cindy's experience (in www.lymphomasurvival.com) so helpful, I thought that others may get something from my experiences (or at least I will get some therapy out of writing about them). Tomorrow I start my 3rd cycle of R-CHOP for DLBCL (Monday: Lab and Doc visit, Tues.: Infusion, Weds.: Neulasta shot, ... then ... deal with it (I am on the 21 day fun plan for a total of 8 treatments).
Recap of the 1st two treatments:
Cycle 1: Had two messenteric masses (10cm and 11cm), with nodes in about 10 other places. Just started some minor night sweats (but I sleep in A/C w/2 fans on me always, so it was somewhat mitigated). However, the abdominal masses had doubled in size in the past 6 months, and were causing me pain. Was very actively practicing TNS (the Natural Solution from the earlier mentioned website), and as I have said I am in real good condition as a VERY strong, and fairly lean 59 yr old (60th birthday 1.5 months away), so I came into this in pretty good shape, physically. In early June, following bad results from a new biopsy and PETscan, I did R-CHOP #1. We had to stop early in the Ritiuxan administration since my mouth started to tighten, and then got itchy in my right side of my face - allergic reaction - IV benedryl and more dexamethasone - then retarted. 1st treatment = 9 hrs. Went home, took a 45 min walk, ate a good dinner, and then took the 30 min bath (note: need bath toys). Read about the Neulasta bone pain in the other site, talked to a breast cancer patient about it, and finally, asked the nurse who gave me the shot (in my arm) whether Claritin was a good idea. She said definitely, and I then asked when ... to which she responded "right now". Funny (actually sad), I had to pull this info from the medical community. It was never offered, but IT WORKED. I took a 24 hr. Claritin readitab every day for 5 days, and experienced NO bone pain. I asked my doc about why he hadn't told me about this, and his response was that it is not approved protocol, and doesn't work for everyone. OK, so let's see from a risk management state: If it doesn't work, then I am out $1 (and keeps my allergies at bay), and have the same 1 week of deep bone pain that I was going to have anyway vs. it works (and no pain - which it did). This is really a no brainer. After the feel good steroids wore off on Weds evening, I had a lot of cramping "dull" pain in my upper abdominal area through Sunday (doc said in my follow-up that this is due to the Vinsristine), then felt like I wanted to crawl out of my skin on Monday. Went back to work on Tuesday for a few part days. Still had, but less abdominal pain, but it always seemed to commence in the mid-afternoon (have no idea why). Never experienced the fatigue that some report (had a CBC on Monday, and levels were fine, except WBC). The last feel good week went well.
Cycle 2: Met with the doc, had more blood work (all good w/good WBC), and he told me that what I experienced in cycle 1 would be similar to cycles 2-4. Then in cycle 5-8 the cummulative effects of the prior cycles would compound with the current treatment. So we did treatment #2. Treatment 2 = 7 hrs. Results: the intesity of the side effects were the same as cycle 1, but they lasted longer. Matter of fact, I am on day 19, and actually had some stomach feelings even yesterday (didn't medicate, but felt them). The cumulative effects that he was talking about have to happen with each treatment, but I am a very astute observer of my body, and clearly noticed this. I guess what he was saying, was that most would notice significant accumulation by treatment 5-8. Still no fatigue. Abdominal pains were a bit worse and lasted longer, so I started Percoset for them (as needed). A bit of chemo brain, or is that just getting old, I am an active working muscian, and the other day, on a song that I play all of the time (Wild Nights by Van Morrison), I forgot the signature opening bass part (fortunately no neuropathy, yet). Took me 2 lines of the intro to the song before I figured it out. I also found that while I was feeling like crap, mentally, if I kept doing things, it helped the day go faster, and kept my mind off of this. In fact on the bad 1st Sat. after treatment, in 100 degree temperature, I went out and re-did my entire garage (moved a freezer and a refrigertor, hung all new shelves, and reorganized everything). On Monday, when I felt like I want to crawl out of my skin, I went out with a bucket and a sponge and got down on my hands and knees and wash the floor of my outside gazebo (just to kill time). I also, have been stopping at Meadows Farms after each oncology visit, and buying plants. I need to see lots of life and color now, and my yard is looking great.
Observations (post 2nd cycle): Down 20 lbs. abdominal area is much smaller, my beard ended up in the wash cloth about 2 weeks ago, the lump in my neck is gone, drinking lots of ice water (went to a club last night to hear a friend's band and drank ... you got it ... ice water - saving lots of money on drinking alcohol). SO ... this is definitely working. Had good workouts this week, and even though I have missed a lot of workouts, I can still bench 3-45 lb plates on each side of the bar. I'll keep doing what I can.
Cycle 3: Today, starts cycle #3 (infusion on Tuesday). I am apprehensive, but know that this will be one more treatment down out of the 6 I still have coming. I'll get through it.
Just thought that someone coming "down my pathway" may get some value out of this. At least was good for me to write it.
_________________
Stage 3A, Grade 1 fNHL (Dx 10/21/11 W&W for 6 mos). DLBCL w/10 & 11cm messenteric masses (Dx 5/12 w/new biopsy & PET scan). Starting R-CHOP on 6/5/12. 59 yrs. lifetime involvement in bodybuilding w/strong heart (hope it stays that way).
Recap of the 1st two treatments:
Cycle 1: Had two messenteric masses (10cm and 11cm), with nodes in about 10 other places. Just started some minor night sweats (but I sleep in A/C w/2 fans on me always, so it was somewhat mitigated). However, the abdominal masses had doubled in size in the past 6 months, and were causing me pain. Was very actively practicing TNS (the Natural Solution from the earlier mentioned website), and as I have said I am in real good condition as a VERY strong, and fairly lean 59 yr old (60th birthday 1.5 months away), so I came into this in pretty good shape, physically. In early June, following bad results from a new biopsy and PETscan, I did R-CHOP #1. We had to stop early in the Ritiuxan administration since my mouth started to tighten, and then got itchy in my right side of my face - allergic reaction - IV benedryl and more dexamethasone - then retarted. 1st treatment = 9 hrs. Went home, took a 45 min walk, ate a good dinner, and then took the 30 min bath (note: need bath toys). Read about the Neulasta bone pain in the other site, talked to a breast cancer patient about it, and finally, asked the nurse who gave me the shot (in my arm) whether Claritin was a good idea. She said definitely, and I then asked when ... to which she responded "right now". Funny (actually sad), I had to pull this info from the medical community. It was never offered, but IT WORKED. I took a 24 hr. Claritin readitab every day for 5 days, and experienced NO bone pain. I asked my doc about why he hadn't told me about this, and his response was that it is not approved protocol, and doesn't work for everyone. OK, so let's see from a risk management state: If it doesn't work, then I am out $1 (and keeps my allergies at bay), and have the same 1 week of deep bone pain that I was going to have anyway vs. it works (and no pain - which it did). This is really a no brainer. After the feel good steroids wore off on Weds evening, I had a lot of cramping "dull" pain in my upper abdominal area through Sunday (doc said in my follow-up that this is due to the Vinsristine), then felt like I wanted to crawl out of my skin on Monday. Went back to work on Tuesday for a few part days. Still had, but less abdominal pain, but it always seemed to commence in the mid-afternoon (have no idea why). Never experienced the fatigue that some report (had a CBC on Monday, and levels were fine, except WBC). The last feel good week went well.
Cycle 2: Met with the doc, had more blood work (all good w/good WBC), and he told me that what I experienced in cycle 1 would be similar to cycles 2-4. Then in cycle 5-8 the cummulative effects of the prior cycles would compound with the current treatment. So we did treatment #2. Treatment 2 = 7 hrs. Results: the intesity of the side effects were the same as cycle 1, but they lasted longer. Matter of fact, I am on day 19, and actually had some stomach feelings even yesterday (didn't medicate, but felt them). The cumulative effects that he was talking about have to happen with each treatment, but I am a very astute observer of my body, and clearly noticed this. I guess what he was saying, was that most would notice significant accumulation by treatment 5-8. Still no fatigue. Abdominal pains were a bit worse and lasted longer, so I started Percoset for them (as needed). A bit of chemo brain, or is that just getting old, I am an active working muscian, and the other day, on a song that I play all of the time (Wild Nights by Van Morrison), I forgot the signature opening bass part (fortunately no neuropathy, yet). Took me 2 lines of the intro to the song before I figured it out. I also found that while I was feeling like crap, mentally, if I kept doing things, it helped the day go faster, and kept my mind off of this. In fact on the bad 1st Sat. after treatment, in 100 degree temperature, I went out and re-did my entire garage (moved a freezer and a refrigertor, hung all new shelves, and reorganized everything). On Monday, when I felt like I want to crawl out of my skin, I went out with a bucket and a sponge and got down on my hands and knees and wash the floor of my outside gazebo (just to kill time). I also, have been stopping at Meadows Farms after each oncology visit, and buying plants. I need to see lots of life and color now, and my yard is looking great.
Observations (post 2nd cycle): Down 20 lbs. abdominal area is much smaller, my beard ended up in the wash cloth about 2 weeks ago, the lump in my neck is gone, drinking lots of ice water (went to a club last night to hear a friend's band and drank ... you got it ... ice water - saving lots of money on drinking alcohol). SO ... this is definitely working. Had good workouts this week, and even though I have missed a lot of workouts, I can still bench 3-45 lb plates on each side of the bar. I'll keep doing what I can.
Cycle 3: Today, starts cycle #3 (infusion on Tuesday). I am apprehensive, but know that this will be one more treatment down out of the 6 I still have coming. I'll get through it.
Just thought that someone coming "down my pathway" may get some value out of this. At least was good for me to write it.
_________________
Stage 3A, Grade 1 fNHL (Dx 10/21/11 W&W for 6 mos). DLBCL w/10 & 11cm messenteric masses (Dx 5/12 w/new biopsy & PET scan). Starting R-CHOP on 6/5/12. 59 yrs. lifetime involvement in bodybuilding w/strong heart (hope it stays that way).
Will be thinking about you on Tuesday and will be saying a prayer that this one will be easier....
Hang in there and please keep sharing your stories. I think we all like hearing how you are doing...and learning from your brave adventure in chemo.
You seem to be handling it all a whole lot better than I did. I'm impressed and happy for you.
During this treatment cycle, the predominant issue was that I was wired from day 2 through day 18. Kind of like I drank 14 cups of coffee at the same time. Not fun. The oxycodone helped to take some of the edge off of the wiredness, but not all. Minimal abdominal pain this cycle. I did go to beach on day 5 - 12 {but, I cant really drink or go in the sun, so not much to do there}. I did get a couple of workouts in at the local YMCA (felt good with the first set), and read a book. The night I got back I played a gig. The problem is that I look very healthy to others, but not from my side (having to live in my body). So I wasnt very sociable and a bit snappy. Again not fun. I told my main music group that after the gig on 8/18 I am going to go on a leave of absence until the chemo is over. Dont want to, but I need to. Dont think that I need to be out in bars with smokers, and sick people, until 3AM at this point.
While I was at the beach, I got a call from my case manager from Blue Cross (insurance) who asked me if she could do anything for me. First, I said no, then I said, you know there are 2 things that you can do: 1) order me a new body, and 2) turn the clock ahead to November (treatment #8 is on Oct. 30th). She laughed, but I was serious. But, I did get the hoop earring to go with the no hair Mr. Clean look.
This past weekend I promoted the a pro-qualifier drug free bodybuilding and figure event. I large endeavor when I dont have this stuff. But, I assembled a good team to assist me, in case I went down, and pulled it off. I need to do less (but this was on the calendar last year, so ...). It went well, but I am soooo happy to be on the other side of it. Talking to a bunch of carb depleted competitors while I was wired form this past cycle was very tough. Then you get the call from a competitor who announces at the beginning of her call that Im the one who called you 3 other times. Lets see, if 70 athletes make 3 calls each, were talking about 209 more calls than I wanted to talk on.
I asked the oncology nurse about the wired feeling. He said that everyone has different experiences with chemo, but he really hasnt had a lot of that kind of complaint. Anyone else have this experience. The doc seemed to feel that it was a positive thing (its sign that things are working. Okay, but still not fun).
So here we go again. Thanks for letting me go on about all this.
I've not done RChop so I don't know about the wired feeling. Hopefully others will. I do know the "p" is Prednisone. I wonder if that is doing it to you? I know it can.
It is fantastic you are able to still do the things you wanted/committed to do. You are probably right to stop the band thing. The smokers and sick people are bad for you right now. Maybe you can find people to jam with in a smaller, healther setting? I know your music is important. I also think it is important to try to do the things we enjoy while in chemo.
Hang in there. I hope today goes well for you. You are half way done!!!
DAVE
Hang in there. Sounds like today's infusion is almost done!
Hope everything continues to go well for you. Thanks for keeping us posted.....
This cycle has actually been a bit less eventful (the wired feeling was shorter). Funny thing, I never feel bad in the morning. Just as the afternoon progresses, is when the not-so-nice feelings start. Does anyone else have this "time of day" issue? My favorite time of day is when I take the sleeping pills and get to turn the day off. With the pills I sleep great.
I am absolutely confident that the PET scan results are going to come back great. The lumps that I could feel before, seem to be gone. So .... here goes.
Praying that the pet scan come back with good news. I believe you will have good news since the lumps you can feel have gone down. That is great.
How are you feeling otherwise. Hope you are doing well.