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Life and exercise after RCHOP

hijenist's picture
hijenist
Posts: 6
Joined: Jan 2012

After 6 rounds of RCHOP for Large B Cell Mediastinal Lymphoma, my oncologist said I was in remission. It has been three months since, and although my energy is returning I still don't feel 100% It seems like everyone around me expects me to be completely back to normal! One of my issues is that I am in the Air National Guard, and they want me to complete my fitness test of 1.5 mile run, timed push ups and sit ups. I tried to tell them it has only been three months, and they don't seem to get it. If you have gone through this therapy, can you tell me how long it took to get back to a regular exercise routine? It is everything I can do just to work and take care of my 7 and 9 year olds. My last blood count shows my WBC at 2.5 which the doctor doesn't seem to worried about. Thanks for any responses!

vinny59's picture
vinny59
Posts: 1032
Joined: Nov 2006

Hi, I have been out of treatment for a year now, and my energy level is about half of what it was. It's so frustrating that people don't understand that you are not your old self. My WBC are at the same levels as yours and my Onc. doesn't seem to worried about that too. They way it was put to me is, they wiped out all my cell's during treatment, believe it or not I had no WBC and RBC by my 5Th treatment, I was almost was forced into the hospital. Everyone is different, get your Doctor involved with explaining your energy levels to the National Guard, have them reschedule till your ready....... Good Luck and stay well! Vinny

allmost60's picture
allmost60
Posts: 3187
Joined: Jul 2010

I am also a year out from my last chemo treatment and my energy level isn't half what it use to be. Maybe my Rituxan maint every other month is keeping my energy slow from bouncing back, but others here that have done the R maint seem to be doing wayyy better than me. My blood counts are good, but between the achey sore joints and fatigue exercising is next to impossible. Babysitting Lizzy 3 days a week(10 hours a day) is all I can muster. Thank goodness she's such a joy instead of a hardship. She's my pain pill for everything! Take care guys....hopefully in time our energy will start to slowly pick up.
Love to all...Sue (FNHL-2-3A-6/10)

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

Sue,
I am a little more than a year out of chemo. I have noticed that after my Rituxan maintenance every 6 months my energy really drops for a couple of months. Then it starts to come back,but never reaches 100%. Then its time for another R treatment and it starts all over again. John

beckycheman
Posts: 4
Joined: Jan 2012

Hi there! I'm sorry but that is total bs that they want you to take a pt test! I was in the army for 10 years and my husband is still in and I know for a fact that they would give active duty members a longer time to recover. You should get a letter from your doc and go on a medical profile! Anyway, I have been in recovery for almost a year now and my energy level isn't even close to what it used to be. I,too, have a 7 & 9 year old and they can be exhausting. On the days that I do work I come home and can't do much for the rest of the night. It's very frustrating b/c I was a competitive athlete prior to my diagnosis and always had a ton of energy. I do exercise almost everyday now but it's not at the intensity it used to be at. Well, good luck.
Becky :)

msbrook2
Posts: 28
Joined: Mar 2011

Hi There,

I had the same diagnosis as you, but did the R-EPOCH treatment instead - also 6 rounds. I think both use similar drugs. I completed my treatment last May (2011) and had some additional radiation through the summer months. I would say I have made significant progress in regaining my strength and stamina. I can do a full 30 min. workout at my target heart rate, and I would dare say I have more core strength now than I did before treatment (but I've been working on it). I probably don't have quite as much arm and leg strength as I did pre-treatment, but I have been intentionally focusing more on my core since treatment so that stands to reason. Almost all side-effects are gone, except a bit of numbness in my toes that continues to subside.

It has definitely been work...and would say it has taken me a good 7-8 months to get to where I am now. At 3 months I was definitely NOT 100% and can't imagine that anyone would be!

Hope that helps.
- Susan

joannl22's picture
joannl22
Posts: 1
Joined: Nov 2015

Thanks to everyone for sharing.  I had six R-CHOP treatments with my last R-CHOP treatment was on September 20, 2015.  I worked full time through the first four treatments, then had to go on Short Term Disability.  I find my short-term-disability insurance company difficult to deal with in that they want "documentation" on when I'm going to be prepared to go back to work full time.  All I know is that as of today, I'm not there yet!  I came to this site looking for examples of types of exercises I should be doing to improve my strength and endurance.  It sounds like it takes quite a bit of time regardless of what a person does; although I am walking and will start some light strength training this week.  Thanks for sharing your experiences as they really help me gain perspective on this subject!  Sending healing energy to all of you on this path.  Cool

Kaniksu's picture
Kaniksu
Posts: 34
Joined: Nov 2015

Joann ..I am hoping to work through mine, the first one not until the 9th..My work is VERY flexible and I have 7 weeks of  leave available..Im hoping to work part-time.. Are you having radiation also?Wishing you the best..

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1775
Joined: May 2012

Joanne and Kaniksu,

Five years ago I finished six months of R-ABVD (12 infusions). ABVD-R is essentially "the Hodgkin's version of CHOP" -- the most common first-line therapy.   Several of the drugs are the same or medically identical, except that there is no Prednisone in ABVD, so nothing to give an energy boost.  Everyone's experience with chemo varies dramatically, from almost no inconvenience to total incapacitatipon, to hospitalization.  Initially I took off from work, but after two months into treatment, I felt well enough to go back. It seemed like no big deal, managable.

A month later, the ax fell. I slept all day (18 hours a day asleep), was extremely weak, stopped eating, and had a list of serious side-effects.  The idea of going to work became a bad joke. It was all I could do to get to the bathroom.

The job of insurance companies is to not pay claims if they can refuse them. Demanding coverage is a full-time, miserable battle.  Just imagine that you are dealing with the social security administration, and you will be in the proper frame of mind.

Assume that you might become unable to work at any time, even if things are going well, and you feel fine.  Assume recovery will take longer than expected, and then let a faster recovery surprise you.  Chemo symptoms change faster than the weather, and are about as predictable. 

max

lindary's picture
lindary
Posts: 310
Joined: Mar 2015

I've been able to work through 6 cycles of R-Chop and 3 of RICE but I also am able to work from home since everything I do is on a computer. For R-Chop my schedule was Week 1 Tues - Chemo. Wed - Fri work from home because I didn't feel safe driving while taking the Prednisone. Sometimes I also worked on Sat. Sun was first day without the Prednisone so it was time to rest up before the crash hit. Mon-Tues work about half a day and sleep the other half because of the prednisone crash. Then Wed-Fri of week 2 and all of week 3 I would go into the office unless I had a medical appt. 

For me going into the office really lifted my spirits. I also have to do a lot of walking to get from my car to the office (and back) plus walking around to get toe meetings and such. Basically I got more exercise at work than I did at home. That probably had more to do with me feeling better than anything else. 

The RICE treatments were different in that I was in the hospital for 3.5 days because the treatment took 3 days and started about halfway through the first day. Since I was in the hospital I did bring my laptops with me. (Yes, that is more than 1. One for work and my personal one.) I would start work after breakfast, break for lunch and quit at supper time (or when the battery died). After supper I would play on my persoanl computer until the battery went out. It kept my mind off what was going on around me and focused on other stuff. One thing I didn't do was allow time for doing a lot of walking. Felt it each time I got home in that I felt physically weak, aside from the low blood counts. The RICE was definitely harsher than the R-Chop.

 

OO7's picture
OO7
Posts: 181
Joined: Sep 2014

I feel such frustration for you, in my opinion you're right out of the gate.  Sorry.  This takes time.  I only did rituxan 7 out of 8 infusions almost a year ago and I'm still not the same.

My first two treatments, I seemed fine but every one after that I noticed I was no longer my former self.

On the outside I appeared normal, for personal reasons I needed to keep my cancer diagnosis a secret.  That said I had do all the Holidays as I normally would and keep up a strong front.  You see my father was diagnosised three week after I was.  I needed to be there for him and my mother.

June of 2014 I started treatment.  In February 2015 my counts were too low to complete all treatments.  On that very day I decide to go back to the gym, not one of my smarter decisions.  I did it but it was as if someone else was driving the car. I thought I could get it back by spinning like a wild women in spin class, though I tried.  Freak show that I know I can be, failed miserably.  Again on the outside appearances can be diseaving.  My doctor and husband thought it was great I was back to the gym (I used to be a gym rat) when I told them how I felt, they had a blank look on there face.  They couldn't comprehend. That was in February.  Last week I couldn't  push a broom, lift my son hockey bag or push sticks in the dirt to decorate outside planters without difficulty.  My once stellar strength is still on vacation somewhere.  Look out world when I get it back

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