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Labs after RCHOP

cnewtrn
Posts: 28
Joined: Nov 2012

My father just had his first treatment with RCHOP for large b cell lymphoma.
He had the neulasta shot and his white count dropped to one. he ended spending 3
days in the hospital as he was dehydrated despite large amounts of water
and gatorade. Is this something that I can expect with his next treatment? Day
6-8 following chemo was horrible with body aches and fatigue and he awoke on day 9 a new man

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

Unfortunatly yes, it will get worse before it gets better. This treatment is accumulative, my counts were always low. Caught a couple of fevers, but I got though it! The aches and pains are from the neulasta shots. Just tell him to hang in their, it will get better..... Vinny

jimwins's picture
jimwins
Posts: 2064
Joined: Aug 2011

Welcome cnewtrn,

You'll find lots of caring and supportive folks here!

Neulasta is given to stimulate production of white blood cells
in the bone marrow to counter effect the drop from chemo and
minimize the period/risk of infection. For me, it took a week or under
to do the job. Neulasta can cause bone and muscle aches. I've read in many
places claritin helps with this so maybe that will help along with
pain medications. Regarding the fatigue, it usually gets worse
over time so encourage him to rest as much as possible and take
things one day at a time. In my experience (R-EPOCH - similar), I don't
think I had a lot of issues with dehydration but I did suffer from
constipation. They gave me senokot every day during treatment but
I learned to start taking it the day before I started a cycle.
I was hospitalized and monitored during my treatment and I'm sure they
added fluids to the IV as well.

He will start losing hair probably somewhere around second and third treatment.
I cut my hair very short ahead of time so I wouldn't have to deal with hair
everywhere and the reduce the psychological impact. You can get fun with head gear - I wore fun "dew rags" and knitted caps to keep me warm. The hair will grow back
and for me, it came back darker and with less gray ☺. I avoided acidic foods
during treatment and for about a week after to minimize mouth irritation.

Regarding the labs, it's very normal for certain counts to be down. This will
continue through out treatment and probably for some time after. My counts
are still out of whack but are slowly rising a year after chemo. It is different
for everyone though. Some here have bounced back rather quickly.

Chemo is no picnic, but it is very doable. As he learns how he reacts, he
can plan and do things to control/reduce some side effects. By about the third
cycle, he should be a more comfortable with the routine.
Positive attitude and humor are free weapons in this war!

I had Diffuse Large B Cell Lymphoma and have been in remission now for a year.
Please know lymphoma is very treatable and this type is considered curable.
There is plenty of hope here and know you guys are not alone.

Others will chime in soon to offer support and encouragement. Please feel free
to share, rant, ask questions, etc. Your father is welcome to join us as well.
I wish the best for your Dad.

Hugs and positive thoughts,

Jim
DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. :)

cnewtrn
Posts: 28
Joined: Nov 2012

Thank you for your words of encouragement as well as experience. this is the first time we have had to deal with chemo in our family so the unknown is the most scarey part. I spend most of my time on cancer boards to read what others have gone through and what they have done to help themselves. I will be keeping my fingers crossed for the next cycle. did you have to be hospitalized with every infusion? lethargy is common, I realize that, but it is difficult to see a 76 year old man who works 60 hours a week barely be able to get out of the chair. I will have to try the Claritin trick this cycle, I f i start him the day of the injection, how many days should he take it for?

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1134
Joined: May 2012

cnewtrn,

When did his wbc count go low, relative to the neulasta shot ? I was hospitalized for three days the day after my first infusion, but my wbc stabilized thereafter and the neulasta always kept my wbc counts normal. But, my infusions were on Fridays, and I did not get neulasta until Monday, so there was a lag time. That is why I ask when the neulasta was given relative to going into the hospital.

As someone else noted, this will be a "cumulative" experience, and most people get weaker and in more pain as treatment proceedes (the chemo causes most of the weakness and pain, not the disease itself). Do not expect him to leap up a 'new man' many more times while on r-chop. I was sleeping 17 hours a day by the time I completed six monmths of infusions on r-abvd (a different treatment combination).

I felt like I had the flu for the whole six months.

Best of luck to him,

max

cnewtrn
Posts: 28
Joined: Nov 2012

His WBC dropped on day six after his neulasta shot. He has his first dose
of chemo s plit so he had chemo Tues and Friday and received the shot
on Wednesday. He was admitted on the following Tuesday with a rapid heart
rate and his WBC at that time was 1.5. He denies any pain, just fatigue
we encourage him to go out daily to take a short walk just to try and keep
stamina up (He has lost about 40 pounds in under a year)
Did the claritin work for you with you aches after neulasta? I am trying to
absorb everything I can to help him along this awful journey. I suppose we
wouldn't have even known how low his white count was if he didn't go in
for the rapid heart rate. When you labs drop, does it make you feel lousy
or just tired?

epicc's picture
epicc
Posts: 136
Joined: Nov 2012

Dear Cnewtrn,

My mom was diagnosed with Large B Cell Lymphoma last month and had her first R-CHOP treatment November 2. She also had the Neulasta on the monday, but did great. Her counts never dropped. She received her first treament in the hospial, but now will be treated as an out patient. She was very very sick before her first treatment, but woke up a new woment almost immediately after receiving the Chemo. She also is complaining alot about fatigue and aches and pains. My mom is 82 and has never been sick a day in her life. It is also very difficult for us to watch her like this. This is also the first time our family has ever dealt with Chemo before so I am also new at this and as you said, I am spending alot of time reading about it and on message boards. This network seems to be very helpful. Hope all goes well with your dad's next treatment.

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

Everyone is different, I'm 53 years old and I was not able to get up and walk, their was no such thing of bringing my stamina up. The chemo wiped me out. I know some people that were able to work through their treatments, not me. Let your father listen to his body, if he is up to taking a walk great, if he is tired let him rest. By the fourth treatment all my counts were 0! Having low WBC's leaves you susceptible to infection, hence why I could not be around people. The low labs along with the chemo makes you feel lousy and tired. Best advise I can give you and your Dad, is to let him rest when tired, and don't push it. I have been out of treatment two years now and I still have low energy, I can't do the things I use to do, but I'm 100% better now, then I was when I was in treatment! Vinny

cnewtrn
Posts: 28
Joined: Nov 2012

My father had blood work today and his numbers are back to normal but the oncologist wants to " reduce" his next chemo. Does anyone know why she would do that? Will that harm his recovery? He has also lost a boat load of weight, almost 40 pounds. is this part of it because the oncologist didn't seem alarmed.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1134
Joined: May 2012

My oncology group had a protocol which stated that for each 10% loss of weight, the dose of chemo would have to be adjusted downward. This is standard proceedure.

I lost 15% of my weight during treatment, but it was due to seldom eating. I had no appetite, no sense of taste, and could not bear to even smell food cooking. Some folks get food fetishes of sorts; all I could eat for a long time was french fries. I had another friend who ate nothing but pot pie for several months. My last two months or so of treatment were mostly on breakfast drinks.

Your dad is receiving Prednisone, I think. I did not get Prednisone, which can have radical effects on appetite, so you may want to read up on that drug. A great site to read about his meds is www.chemocare.com.

max

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JP_NHL's picture
JP_NHL
Posts: 12
Joined: Nov 2012

Hi, cnewtrn...

I have been undergoing dose-adjusted R-EPOCH regimen since August 2012. Both R-CHOP and R-EPOCH are used to treat diffuse large B-cell lymphomas.

I'm in my mid-40's. I was in good physical shape before commencing with treatment. I started losing hair after cycle 1; having a shaven head made for an easy transition. Chemo will lead to hair loss in other areas. I even lost hair on my eyelids.

High dosage chemo is as tough as it gets, esp. when it's for five straight days, like what I and others have. Keeping a healthy diet and a positive attitude helps a great deal. Your father should go for short walks (esp. in between cycles), if he's up for it. Encourage him when you can. Surrounding your father with love and good thoughts can go a long way.

Jim is correct: Claritin may help to reduce skeletal pain and soreness associated with Neupogen and Neulasta. Based on my experience it works. I recommend taking Claritin the day before, the day of and the day following the injection. Your father may continue taking Claritin when he feels the onset of pain. If the pain gets bad it's time to take Percocet. Two does the trick for me; and I'm very reluctant when it comes to pain killers.

R-CHOP is similar to R-EPOCH in that the dosage is calculated based on the patient's height and weight. Same goes for Neupogen and Neulasta. Has the Neulasta dosage been reduced since your father's significant weight loss?

Also, the regimen can be adjusted based on how the patient responds to treatment. For example, I didn't hit the 'nadir' until after the 4th cycle. Consequently, my oncologist increased the dosage by 20% after each cycle. Hitting the nadir-becoming severely neutropenic--is when the patient's absolute neutrophil counts (ANC) drops to 0.5 or below. ANC are white blood cells that fight infection. When my ANC dropped to 0.1 after cycle 4 and I suffered oral mucositis, my chemo was reduced by 10% for round 5.

It's important to know the undulating effects on the blood counts from the chemo and Neulasta. The first few days following chemo (immediately after the injection), the RBC and WBC are typically high then begin to drop. By day 6, the patient can be nearing neutropenia, and is likely to be neutropenic between days 7 - 10, following the last day of chemo. RBC and WBC go back up by day 10 or 11.

Hope this helps and my very best to your father!

JP

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1134
Joined: May 2012

My experience was very similiar to Vinny's. In the language of the street, chemo "stomped my ass." You will read wildly differing accounts about what people experience here, but most people on "combination therapy" (numerous drugs at once, like r-chop) and who received a lot of infusions (more than 4) seem to mostly state that they were devestated by the ordeal of undergoing treatment.

Of course, I would start back tyomorrow, since it saved my life, and I have now gone from Stage 3 to complete remission for 3 years, but do not believe anyone who says that intensive chemo is not brutal and difficult.

I NEVER had low wbc counts my whole 6 months on chemo, but I read in this thread that it is not that uncommon. Perhaps it is because of something in the r-chop verses the r-abvd that I took. At any rate, the doctors will assess whether he is ready for his next infusion each time. Just be there for him and understand his inability to walk or move around much if he gets that bad, like I did. I could barely walk 50 feet to my car for my wife to drive me to the infusion center. Some people have it worse than that, like my neighbor. He was only 30 years old, but had to stay in the hospital for much of his six months on chemo.

Today, three years out, I still have numb hands and feet (neuropathy), as well as breathing problems, and severe fatigue. But, I give thanks !

Bless his recovery,

max

veedub's picture
veedub
Posts: 42
Joined: Jul 2012

i just had my last of 6 R-CHOP infusions yesterday and my last of 5 Neulasta shots today. i'm 74 and was very active before diagnosis of diffuse large-B cell lymphoma in late july. i started Neulasta because after my first chemo my neutrophil levels went waaaaaaay down. i wasn't hospitalized at all, and have had no pain at all from the Neulasta. and my neutrophils are back up where they are s'pose to be. that stuff really works (and i hear the claritin helps with the pain).

about the fatigue--oh, yeah, i got flattened, repeatedly. i'm relatively okay after chemo until the day i stop taking the prednisone (day 5). then it's at least two weeks of hell. no pain, no nausea, just the feeling that my insides have all been scraped, like a slight sore throat all the way down. not too bad. but the fatigue is debilitating, and emotionally i'm all over the place, crying, laughing, being insane. and my allergies kick in like gangbusters, so my nose is continually drippy, my eyes are teary and itchy, and (this is what my onc told me)the reason my eyelids keep drooping so that i can hardly read is the side-efffect of steroid withdrawal. i need glue or something to keep my eyes open enough to see.

if all goes well, i can expect to spend the next six months to a year getting my body back, with exercise, healthy diet, and getting back into projects that i dropped (learning Brazilian Portuguese, writing a book, you know, the kind of stuff you do around the house). lessons learned: it's time to actually tackle all those things i had been putting off.

i hope your dad's process can be as easy as mine has been. even with the fatigue and mental wackiness, i am continually grateful that it hasn't been worse. while in the throes of chemo-hell last cycle, i was encouraged by my daughter to write a comic book about it. so i did. if you would like me to send you a pdf, email me at v dot weatherwax at gmail dot com. i think it's helpful to see what it feels like from the inside, and these drawings are all about that. and it might be useful to your dad to see what he can expect, and that he's not alone. it's very unpleasant, but it's just your body getting rid of all the poisons you've been using to get rid of the lymphoma. (they have to partially kill ya to cure ya.)

i found that sitting at the computer and making a drawing a day was just about all i could do during this time, but that it felt really good to take control over my situation and communicate it in pictures (and a few words). and after a while, one day when i was trying to make the bed (and having to sit down for five minutes after adjusting each sheet or blanket),it just came to me I AM GOING TO WIN THIS. people tell you to keep a positive attitude, and sometimes you just want to look at them and give them the raspberry, but good attitude can come only from within. your dad is climbing everest, and you and all his other support group are his sherpas. so good luck to the climber and good luck to his sherpas!

sending reiki

veedub

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