Non-hodgkin's Lymphoma Support Group

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.

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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).
Posted on 07/16/12, 07:29 am