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).
Trying to come to grips with this, since I was sure that everything was going great. I even went to this appointment alone (big mistake). Anyone here have any words of wisdom on their experiences with R-ICE. Based on the chemo write-up sheets they gave me, it doesn't sound like fun. All this in the week that I turn 60 (next Sat).
So hang in there. You are a fighter for sure. While cancer sucks, I know you can knock it out for sure!
My wife cancelled her beach trip to be here with me. Originally, with the R-CHOP she was going to go the the beach, and then pick me up after the Neulasta sho on Weds. But, with the R-ICE protocol, all bets are off. I finish one day before my 60th birthday, on Saturday. Then a week later we have 120 people coming to my home for my party. Planning this party has kept me going through all of this. I just hope that I feel decent that day.
Good news, the 60th birthday party went great, and the last of the guests just left to go back to New Orleans this past Sat. Then I dee-jayed a wedding that day that I had contracted prior to my diagnosis. Kept the dance floor packed the whole night, but I am glad that that is over.
Doc felt my abdomen on Friday, and said that he could not feel the mass. Great. However, he is now giving a 45-50% prognosis. Not so great (but could be worse).
I did talk to him about LDIFRT. He said that at this time he was against it. But, was open to it after the treatments (and stem cell transplant). He said to dsicuss this with the transplanter when I meet with him.
Today is my rough day. But I now have a PRN prescrition in my file for 40 mg of Lasix (water pill) as soon as I gain 5 lbs. (I will hit that by noon. Last time I went up 22 lbs. before they started the Lasix). Urinated every 5 mins., and lost the weight in 2 days. Maybe this will make this cycle easier. All that fluid gain was really uncomfortable.
All the best.
Dave
_________________
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).
Being right in the middle of this, now, it is always great to here that there others on the "good" side of the treatment, and that things are working out ok. The R-ICE treatment is rough, not because of the residual, but because of the actual amount of treatment time (and fluid). In a week and a half, next PET scan, w/results the next day. Hopefully, this is working, this time, after the limited success of R-CHOP. Then, on the the autologous stem cell transplant. Will learn more about that real soon.
Thankss for the support.
I think the one thing that I had to embrace was that the treatments were my friends, my saviors, not my enemies.
Also, I accepted that my life was forever changed by the diagnosis. Even if the cancer disappeared tomorrow it had become a part of my life, my psyche forever. But in a good way.
As for the future, I have put it in God's Hands or should I say I have accepted the fact that it has always been in God's Hands. Takes a lot of pressure off of me. Best of luck on your journey.
Did get confirmation from Bruce Cheson, director of hematology and oncology at Georgetown Univ. Hospital, yesteday that my oncologist is doing the right thing. It's just there is a well documented NCCN Protocol for failed R-CHOP. Reached out to him for another set of eyes, and I read in his bio that he plays in a band (like me)
Feeling better each day (finished treatment last Friday).
_________________
Orig. dx Stage 3A, Grade 1 fNHL (10/21/11 W&W for 6 mos). Then, DLBCL w/10 & 11cm messenteric masses (Dx 5/12 w/new biopsy & PET scan). 4 doses R-CHOP (6/5/12) - incomplete. Currently R-ICE. 60 yrs. old, lifetime involvement in bodybuilding.
I had a friend that had a stem cell transplant and is doing fantastic 6 years later. Fingers crossed you follow that same path.
So during the visit with the stem cell transplanter, I ask him for his prognosis. He responds, "do you want it straight". I said, yes. His response, "not very good". Mainly based on the complicated case and the failed R-CHOP (which should have worked). I had had this conversation with my hem/onc who had informed me about 6 weeks ago that we were now looking at about 45 percent chance of sucess (down for the original 85%), so it wasn't new news to me. Still didn't make me feel warm and fuzzy. I asked him what if there wasn't significant improvement based on the next PET scan. He mentioned clinical drug trials, or perhaps an allogenic bone marrow transplant (all of my siblings have some kind of cancer). Yesterday, I asked Dr. Maran in my follow-up about my 2 adult biological children as donors. Usually this isn't done, since half of the their genetic make-up came from a stranger (my wife). But then he said that at Johns Hopkins that they have been having success with this child/donor situation.
So, who knows just will remain upbeat, and continue the process. Just the thought of another R-ICE is horrible.
After the visit with the stem cell doc, and all of this "good" news, I get in my car, and turn on the radio to hear: The Rolling Stones - "You Can't Always Get What You Want" AMAZING - cleaned up the tears, and drove home.
_________________
Orig. dx Stage 3A, Gr 1 fNHL (10/11 W&W for 6 mos). Then dx Stage 4, DLBCL w/10 & 11cm messenteric masses (Dx 5/12 w/new biopsy & PET scan). R-CHOP 4x (6/5/12) - failed. Currently R-ICE. 60 yrs. old, lifetime involvement in bodybuilding.
I've had stem cell apheresis about a month ago. My haem suggested that my stem cell be kept in the bank in case of any relapse. So I had that chemo to shut of all the immune system. Had a central venous catheter inserted in my neck. Then I got admitted for 9 days at the hospital and during that time I had neupogen shots two times daily. But the stem cell just wasn't enough despite all of the shots. Then on the 8th day my haem suggested Mozobil which is like a very powerful drug that will break the bond of the stem cell with the bone marrow so that it will be mobilized into the bloodstream. So, the next day they hooked me onto the apheresis machine but sadly it wasn't enough either. Only 25% of the needed amount. So they pulled out the catheter and I was discharged. So despite the high success rate of Mozobil, it didn't work on me. It has really good reviews though I'd suggest you look into it.
All the be to you.
So right now, I just have to pray that I won't have any relapse of the cancer in the future but if it does come back, the next thing to do is R-ICE chemo and he will try to harvest the stem cell after the first cycle of R-ICE. I really need to start eating veggies and have fruits other than apples. Lol.
Hope everything goes well for you. My prayers are always with you.