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Working during RCHOP?

Julie-n-Dennis
Posts: 7
Joined: Jun 2012

My husband was diagnosed with FNHL 5 years ago, went through chemo with Rituxan and Velcade, and achieved remission 6 months later. Well, we recently noticed a large mass on his jawline and ultrasounds and PET scans (SUV of 12+) initially confirm presence of lymphoma. The biopsy is scheduled for 2 week from now (we're worried it's taking too long to get the biopsy, especially if it's transformed into an aggressive form). But his onc is reasonably sure it's relapsed. We're looking at him going through the RCHOP regimen and are wondering if he's going to be able to continue working during the course of treatment. He is a college professor and so comes in contact with lots of sick students during the course of a semester, so, of course, we're worried about germs. Also, we were wondering is anyone out there continued to work full-time or if most folks just find it impossible to function regularly? I went through treatment for breast cancer in the last year and a half and know what Adriamycin and Cytoxan can do to you -- it was administered on a two week cycle and one week I was wiped, and the next I was able to go to work. But does the addition of the Prednisone and Vincristine in the RCHOP make it impossible to work?

Any insights, advice, and information are always greatly appreciated.

jimwins's picture
jimwins
Posts: 1970
Joined: Aug 2011

Hi Julie and Dennis,

Reactions to chemo can be different - I've seen some people on this site who
continue to work during chemo. In my experience with R-EPOCH (similar), I can't
imagine working during that. The prednisone kept me awake and bouncing off the walls
then there was the crash afterwords. There was a lot of fatigue as well.
For me there was a period of about a week where I was neutropenic and had to avoid
crowds, sick people and raw foods. Also, there was the psychological side of
all of it. For my treatment, I had to be hospitalized for 5 days (4 nights) so
obviously I couldn't work during that :).

If Dennis feels up to working but wants to avoid being around sick people, perhaps he could make use of technology? So many things are possible with the Internet these days :).
I don't know what he teaches but I'd think he could teach/lecture from home, and
interact with students, etc. that way. Just a thought.

Many others will chime in here shortly. Sorry you have to be on this site but you'll find a wealth of caring and supportive folks here. Sounds like you two have already had more than enough experience with the beastly "C". I wish you the best.

Hugs and positive thoughts,

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

Julie-n-Dennis
Posts: 7
Joined: Jun 2012

Thanks, Jim, for the info. It's definitely been a ride these last few years. May I ask: Did you get Neulasta or Neupogen? If so, the neutropenia was still a problem? If not, was there a treatment related reason why your onc didn't want you on it? I had the Neulasta during my treatment and I never had a problem with the blood counts, and I work in a middle school. But, that was a different regimen, obviously, and we're still trying to find out what goes along with the NHL regimens.

The saving grace is that Dennis has 100s of sick leave hours available to him that we think he can use concurrently with medical leave, if necessary. Of course, until the biopsy results come back, everything is up in the air, and, as we all know, the waiting is the worst. Still, I thinks it's essential to arm ourselves with as much information as possible so as not to be surprised when the dx comes in.

jimwins's picture
jimwins
Posts: 1970
Joined: Aug 2011

I received a Neulasta shot about 48 hours after a chemo cycle was finished
and a few days after that I had to come back for lab draws for blood counts.
I believe I was netropenic every time but the Neulasta brought things back
up to acceptable (still low due to chemo) levels - usually within a few days.

John (cobra) is right, the fatigue gets worse as the cycles progress.
I was instructed to call the cancer center if I ever had a fever of greater
than 100.4 degrees. That happened once and I had to go back into the hospital
for a few days where they gave me antibiotics (and ruled out any major
infections).

The side effects of prednisone can be challenging - bouncing off the walls,
couldn't sleep, more emotional (no filter for my mouth), hungry all the time, and CRASH when it wore off :).

Nowadays they can control side effects of chemo pretty well - I had only one issue
with nausea and I think it was more related to constipation honestly. They gave me
senokot every day and I learned early on to start taking that the day before treatment
began. I also learned to avoid acidic foods during treatment and a week or so after
to prevent mouth irritation/sores.

The first cycle was scary as I didn't know what to expect but by cycle 3, it was
more routine. It's no picnic but it's very doable. Humor and attitude are free
weapons in this war ☺.

I was fortunate as I did very well with the treatments and they considered me a "model patient". Lymphoma is very treatable and there are many success stories here
so know there's plenty of reason for optimism and hope.

Ask all the questions you like or just come here to vent also.

Please keep us updated and sending you both warm and positve thoughts and
energy ♥.

Jim

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 996
Joined: May 2012

Julie,

I saw the question you posted regarding Neulasta. I took it two days after each infusion with a different combo (r-abvd, for HL). I had years earlier suffered a broken back, and the pain after the first treatment with Neulasta was so severe, they cut me back to a 1/2 dose each time. My WBC stayed way up, around 16,000, with a 1/2 dose.

Although my drugs were, as I said, different, my condition deterorated after every session of chemo (I did 12 cycles, over a duration of six months). After two infusions, I went back to work briefly, thinking all was ok. That soon changed. By the third or fourth infusion, I was sleeping at least 15 hours per day, and could walk only very short distances. Later on, I slept 17 or more hours per day. I never had any of the drugs that caused hyperactivity or energy, obviously. I was taking the adriamycin that you mentioned ("Red Devil").

I lost all sense of taste; I did not get the "metal mouth" that most people mention. At times, I had odd sensations, such as tap water tasting like mud, or like blood on one occasion. For a long while, I had no appetite, and would eat only french fries. I have a friend who took MOPP decades ago, and he has a similiar reaction, but said that for months he would eat nothing but pot pie.

Therefore, hope for the best, but know of the worst. There is a huge range of side effects, from none, to dibilitating. My next-door neighbor, who was a large guy, and only about 30 years old, did six monmths of r-chop, and lost 30% of his body weight, and could not walk at all, except to the bathroom.

I hope your husband's ride is an easy one,

max

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

J and D,
First of all welcome to the sight nobody really wants to be on,but if we have too its a great place to be. I was diagnosed with follicular NHL a little over 2 years ago. Currently in remission. I went thru R-CVP with 6 treatments. I had neulasta shots as well. The first couple of treatments were not too bad but by the 3rd one I was really starting to drag. Got worse with each one after that. The last one felt as though I was on my knees going across the finish line. Everyone is different I know. If I had to work I would not have been able too by the 4th treatment. I did not have R-CHOP and I have heard it is much harsher than the R-CVP. John

allmost60's picture
allmost60
Posts: 3147
Joined: Jul 2010

Welcome Julie and Dennis,
I agree with John. We both have the same story and type of cancer, and also did the same chemo protocol. I know for sure I couldn't have worked because of the prednisone alone. that nasty medicine truely did a number on me! Even after the 5 days of pred was finished,I then faced the fatigue non-stop until the next round. I think the last 3 or 4 days before each round was when I felt my best. Like John said.."we are all different", so maybe your hubby will do just fine. Best wishes..Sue
(Follicular NHL-stage3-grade2-typeA-Dx 6/10-age 61-considered stable)

Julie-n-Dennis
Posts: 7
Joined: Jun 2012

Thanks for all of your comments -- it confirms what we feared might be the case. Forewarned is forearmed, of course, and this will give him more information for when he has to go to his department head. This was to be his last year before retirement -- perhaps he'll be up to teaching in the spring.

I sympathize with what you've all said about the effects being cumulative. I only had four of the Adriamycin/Cytoxan but I know that by the fourth round I didn't think I could force myself to go back to the chair. Dennis was here for me though and helped me see I could do it, and I want to help him through this. His first go-round, with the Velcade was so relatively easy (no nausea at all, moderate fatigue, no hair loss, but lasting residual neuropathy), and he never had any issues with the Rituxan; now he's got to face the big guns. I hate for him to have to deal with it.

But, it's far better than not having anything, isn't it?

ta8631
Posts: 40
Joined: Jun 2012

I just received my 1st cycle or r-chop last week and so far so good I have returned back to work. I found that so far the predisone isn't to bad if I take it early in the morning. I am hoping for the best and don't know what to expect with the other treatments but still planning each day as it is any other day and if I have to change plans so be it. I will continue to live the life I always wanted.....with or without cancer

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

TA8631,
Sometimes its all we can do. I did notice I was having trouble with my taste buds. It got to the place I could not even taste mustard. Everything had a metallic taste to it. It took a while for me to be able to taste food as I should. Sometimes it feels like some foods do not taste the same as before chemo.Tomato sauce really taste acidy anymore. I know it is acidy,but more now than before.I believe my sense of smell got keener because it was making up for what I could not taste. Even to this day white bread smells really more yeasty than before. Therefore I will not eat it any longer. John

Julie-n-Dennis
Posts: 7
Joined: Jun 2012

One of the things that "bothered" me so much was that things tasted so different when I was on chemo, especially chocolate. I just couldn't eat it for the four months during my treatment and about four months after. Thankfully my taste buds are back to normal now, a year past my rounds with AC and Taxol.

Julie-n-Dennis
Posts: 7
Joined: Jun 2012

Hearing what you're going through from your first treatment is extremely helpful. Each person reacts a little differently to the treatments, and it's nice to hear many different stories to find out what the gamut of reactions can be.

Good luck with each succeeding treatment -- here's hoping for a smooth ride for you.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 996
Joined: May 2012

Let us know how Dennis is doing as things move from cycle to cycle.

max

Julie-n-Dennis
Posts: 7
Joined: Jun 2012

I definitely will. Right now, we're waiting for the biopsy which our oncologist wanted us to have last week, so we wouldn't have to wait so long to find out what's going on, but which the surgeon's scheduler doesn't seem to think is much of a priority.

Gotta love the waiting game.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 996
Joined: May 2012

Ta8631,

See my post above to Julie. I hope you continue to do well,

Your abvd friend !

max

kjm21
Posts: 1
Joined: Mar 2011

First of all, I wish you well on this journey, as you already know it is not an easy one! I did have Rchop-21 and though I was sick with it, I was able to maintain working full time. Now, my work was very flexable and allowed me to work from home when needed, but honestly, if I needed to be at the office I could have, but I think I just would have been more worn out.

The biggest issue is if the nausea starts get on it right away, once it gets away from you thats when the problem starts. You might consider asking for or having available Emend which worked the best for me.

As for the large doeses of steroids, I honestly think that was the best/worst part of it. Thats what made me the most sick, but also during my most "tired" time I couldn't sleep because of it and thus became very productive.

Good luck to both of you!

nikkig43
Posts: 73
Joined: Feb 2012

Just thought I'd throw my 2 cents in. My husband had 3 R-CHOP infusions, then 20 radiation treatments for Non Hodgkins Lymphoma in his Left tonsil. He continued to work everyday throughout all of it. His blood counts remained normal so he did not require medication to boost his counts. During the 5 days of Prednisone, he took an Ativan at night to sleep. He also took a Zofran every morning for the first 5 days after the infusion to prevent nausea and vomiting. There were a couple of days that he came home from work early due to fatigue, but overall he felt pretty good.
He finished treatment on May 31st. His first scan post treatment will be in 2 weeks. Hoping he is still cancer free :)
My husband has an aggressive form of Lymphoma. He felt a painless lump in his throat for at least 3 months before he finally went to the doctor. After that, it took about 4 weeks before he started treatment. He is very calm and although the waiting was annoying to him, he didn't stress about it. I, on the other hand, was very stressed. It made me crazy to wait for the test results then wait for treatment to start. I know how you feel. I'm sorry that you have to go through this. I'm praying that the biopsy results are negative.
Keep in touch.

Julie-n-Dennis
Posts: 7
Joined: Jun 2012

My husband's PET scan and biopsy results have come back and the news is (relatively) good. The PET scan showed that the mass in his jaw is the only active area of cancer, so, no other active disease. The biopsy has shown that the active tumor is the same indolent form he had 5 years ago, so there's no transformation. Within the constraints of a recurrence, we are happy with the news. Which leads to our other news -- we met with the oncologist today and he says he doesn't think chemo is going to be necessary; he is recommending just radiation. (He will meet with the tumor board tomorrow and present Dennis' case, to see if others would recommend Rituxan maintenance.) So, on one hand we're thrilled that he won't have to undergo heavy-duty chemo. But I will say that the little dark voice in my head wonders if this will this be enough . . . We'll have to meet with the radiation oncologist in the next few days. Dennis' biopsy incision is still healing. Do any of you know if they can begin radiation before it's completely healed, or will they have to wait? Also, would any of you know if there are any active threads on the boards for people going through radiation?

Thanks again for all your support!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 996
Joined: May 2012

I have read many times that mixing chemo of any variety and radiation significantly increases the chances of relapse or leukemia.

I would ask both of the doctors this directly and specificaly, and then go from there...

max

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