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round 1 of R CHOP

merrywinner's picture
merrywinner
Posts: 627
Joined: Aug 2009

Greetings to all. I'm needing a little info from all of your experiences. Had 1 R CHOP treatment on 10-6 with 5 more to go. It didn' go too bad the steriods probably causing the most problems but were of short duration..5days. I had blood work done on Tuesday and recieved a call telling me my blood was very low and I should wear a mask if I have to go out in public. If I get a fever of 101 or greater go to the ER. They feel it should start rebounding soon but that I am a little late on the rebound end which apparently starts happening on day 14 which is when I had the bloodwork done. I don't know if I should go to work or not. I am a nurse and care for 20 patients. I have to have the bloodwork repeated on 10-26 to see if I have recovered enough to have my next treatment which is scheduled for the 27th. I dont't feel too bad, tired and a little shaky at times but no fever. I'm mostly just worried. Any suggestions?

Alice Payne
Posts: 6
Joined: Sep 2009

I had eight rounds of R-CHOP chemo last year, starting in the spring. Fatigue is going to be a problem for you. You will have a yo-yo experience with being tired, then feeling less tired, more tired, less tired, etc. Rest as much as you can, treat the symptoms such as dry mouth. Talk to your doctor about working. Can you work part time, or take a leave of absence?

DenJ
Posts: 26
Joined: Oct 2009

Hi, I just got done with 6 R CHOP treatments as of Sept 3. Now, my white bloods count never went below the "safe" number. Do you also take an injection of Neulasta? I administered one injection in my stomach the day after every Chemo treatment. What that drug does is to encourage your bone marrow to produce more white blood cels, and it worked very well for me. Now you being a nurse, I would advise you to most definitely ask your doctor. No sense in taking chances hon. Good luck and if ya have any more Q's that I feel I can answer, please feel free to ask. You are gonna be just fine....don't let it get to you.

DenJ

merrywinner's picture
merrywinner
Posts: 627
Joined: Aug 2009

Thanks so much for your reply. So far I have stayed at home away from the public but am using up all of my paid time, definately not good for my financial counts. Mayo has indicated I will probably need the neulasta with my next round of R CHOP or sooner if I don't improve by Monday. This is alot of work and worry but hopefully the payoff will be worth it. I'm trying to decide if I should go to work tomorrow. I don't want to scare my patients and there familys by wearing a mask especially with the H1N1 thing in full swing and also don't feel like explaining the reason to so many people. Also the hair is falling out rapidly so I would probably be showing up in a mask and a hat looking much like an alien! LOL Oh well this is an adventure. Thanks again for your help.

Mary

Maryreba
Posts: 9
Joined: Oct 2009

Chop with Ritaxin is hard. I am sure you ur almost at 21 days when your hair will start to thin and come out, Its not a bad thing you don't have to shave throw that wig on and your ready to go. Watch your blood count. If your a nurse and your white count is bad than take the time off work you will pick up other illness. If you get the nueslata shot. Beware that you will have some pain in your bones with it building up your bone and your counts. Please take the timem away from nursing with all the flu going around you need to keep your self well now at the moment. You will do good. Faith courage and strength. I got a lot from GOD, Be strong. My kids suck a++ they should of helped me more and even know since I am so emonational since the nhl came back. But stay away from the negative and you will heel faster. Please try to keep contact on this web site. I will also if I can rememeber my password. that would be chemo brain.

jpattersonkw
Posts: 4
Joined: Oct 2009

I finished 6 rounds of r chop in April 09' and always had a low neutrophil count and a problem with high fevers. I ended up in the hospital for 4 days after my 5th round. I would recommend excerising extreme caution if you're around a lot of people. I'm 6 months post chemo and still have a dangerously low count. I wash my hands constantly, and do a saline nasal and mouth rinse twice a day.

merrywinner's picture
merrywinner
Posts: 627
Joined: Aug 2009

Thanks for the info. My neutrophils were 300 on Tuesday but so far no fever. They will be rechecked on Monday and then the decision will be made to either cancel my treatment scheduled for tuesday or start Neulasta depending on the result. Still so unsure about returning to work. I'm scared of exposure in a health care facility and also don't want to scare my patients and their families. I don't want to end up in the hospital either. I guess we don't have as much control over things as we would like. Hope you are doing well.

Mary

bob1118
Posts: 2
Joined: Sep 2009

Hi. I'm in a similar boat. Diagnosis = non-Hodgkin's follicular lymphoma -stage 3B - aggressive...SO WHAT? Have completed my 3rd R-CHOP protocol of a sheduled 6. For me the doxyrubicin (myocardium distress) and vincristine (G/I distress) have been the troublemakers. Most of my tests are good with the normal low red count, hemoglobin, hematocrits and even borderline low white count. Monocytes and lymphocytes off kilter as is expected. Good days and bad days, so what else is new. I refuse to be a walking advertisement for protracted MISERY. Not I. I deal with the G/I distress effectively by supplementing what the toxicity attacks and take two capsules each, twice daily, of acidophilus OTC. For the myocardium, though I'm a well-managed CAD out-patient. I have a solid muscle and consistent LVEF of the range of 65-68. I feel great fatigue the first 3 days out from a session, but the I am able to work through it fine after those three days and it dissipates much like the ischemia angina spectrum symptomatic distress I used to experience after lengthy sedentary periods. What I'm saying is I don't just accept the fatigue, using caution, I fight back and it subsides and I work through it, but everyone's different and responds and reacts differently as does their body. I sometimes premedicate with a squirt of .4mg sublinqual nitro IF I think I need it. The key is one needs to have a GOOD SENSE of their own body and IT'S response mechanisms. I thoroughly use the 'net to educate myself as to every issue that besets me as soon as it becomes apparent. You must do that and be your own best advocate in this health system or be in trouble worrying about others and the decisions they make WITHOUT YOU! I look docs straight in the eye and tell them it ain't "Okay Doc" with me. All decisions are mutual after we have an intellectual exchange about all options. Agrressive? You betcha. I got one shot at it and I want it to be right.

I never take any flu shots and have even refused them now. Can't remember the last flu I had, maybe a mild one 20 years back. My only specific action is that I gargle with salt water on days I'm going out and similarly swab my nasal areas in that season. At 70 I have certain acquired resistances and I'm not about to panic over Obama's orchestrated version of a pandemic flu. What the Hell am I storing all these antibodies for anyway? Saint Swithin's Day! As long as I'm chemically not distressed (as a diabetic would be) I'm not worried. Despite the current 'temporary' chemical distress (HA!) I'm still not worried.

Much of my confidence is borne of 10 years of supplementing with a good pharmceutical grade of Japanese CoenzymeQ10 w/ tocopherols @ 400mg gelcap dosage. It quite literally saved my life when in 2002 my appendix ruptured. The docs then estimated that in the startling manner it kept the infection localized that it could have been perforated for 5 months or more. It destroyed tissue in about a 2" radius around the appendix and the asst surgeon said..."It was as if your body drew a ragged MagicMarker circle around the appendix, the infection was that defined and restricted." Almost forgot. NO PAIN. Some minor twinges hours before the actual rupture event. That CoQ10 did one helluva job.

To cut to the chase, being a mind-body connection and positive attitude guy I say...Use the salt water protocol. Go to work. Don't back down to this disease and let it drive you. TELL your patients who need reassurance YOUR STORY. Remember if you think you have it rough just turn around the next corner and find some poor soul who has it worse...in spades.

This is my version of a pep-talk Merrywinner and admittedly so for anyone reading it. You MUST stay positive, whatever it takes. Mentally give in and the body follows as night does to day. I realize your concern is with patients about you and co-workers, but there has to be a rationale compromise that can be made.

I treat this like I would an invader to my home. For the home invader I got me and my Mossy 12ga. ready to pay our respects. With cancer and other crapola I got just ME and it gets NO RESPECT! When I started my chemo at the local VA the Infusion Room looked like a waiting room in a funeral hall. I got about changing that, but quick. I went out and had a sign made in bright blue letters. It said THE COCKTAIL LOUNGE and I posted it up with velcro over the double-door entrance and announced the formal name change with a laugh. It's still up two months later and I've got 1/2 the crowd smilin' and joking now and the Chief of Oncology at the Northport, LI, NY VAMC hasn't made a peep! And he'd better not.

merrywinner...BE A MERRYWINNER! Take the advice of an old Navy vet who has hit some big bumps along life's highway. They ain't wipin' the smile off my kisser for nuthin''cause I got many more reasons to live than to die. Best to you from this old fart.
ALL AHEAD FLANK SPEED and DAMN THE TORPEDOES! YOU'VE GOT A LIFE TO LIVE....

Gochop
Posts: 7
Joined: Dec 2009

Merrywinner,

I have a brother that has been recently diagnosed with this disease and also from the Navy and spent many years in the nuclear industry. Is this the type of Lymphonma you have? He had his first R-Chop treatment on 12/11/09.

Thanks,

pniro
Posts: 43
Joined: Jul 2007

Hi I responded to your other post....where was your brother initially diagnosed? What grade of LYG does he have? I have so much information on LYG...I lived and breathed it since 2006.
Patty

Gochop
Posts: 7
Joined: Dec 2009

My brother has grade III. He has just received his second chemo- R-Chop Protocol. We were told that even though it seems to be working, what really matters is he has to not test positive for the Epstein-Barr Virus.( which he did when finally diagnosed) Are you familliar with this?

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