working during maintenance

krzyworv

I was initially diagnosed with type 2 follicular lymphoma Dec 2014.  After 6 months of benda/rituxan I was put onto two years of rituxan maintenance.  After my 2nd treatment I slowly started the process of returning to work. I'm a full time lab technologist (we help diagnose lymphoma among other things, ah the irony).  The process took 3 months and the minute I hit full time I got sick, first the flu, then bronchitis.  I realize the timing didn't help, hitting full time in February but I'm wondering if anyone out there has experienced this, or does work full time while on maintenance.  I'm now back down to 6 hours days.

I should also mention I'm a mother of 3 children under the age of 12 and I commute to work about 45 minutes one way.

Thank you in advance for any feedback.

Vanessa K.

Max Former Hodgkins Stage 3

Common Route

Vanessa,

Your treatment pattern is a common one, both for the initial two drugs and then the Rituxan mainenance.  I would have expected some replies by now, but you can look around at old threads regarding what others wrote in the last year and perhaps get a feel for things.

I did differing drugs, and never did a maintenance routine, but what is common to pretty much everyone is that strength slowly returns. I was back at work, which involved a fair amount of physical labor, within a month of ending  six months of r-abvd.  Not fun, but I managed it, and Ihad been totally incapacitated while on treatment.

I would not assume that you getting sick was "caused" by returning to full time.  My wife asked my oncologist something about my "weakened immune system" once, after treatment.  The doctor replied, "His immune system is as good as anyone's.  If a person has a normal white count, they have a normal resistance. Don't buy into the old wive's tale about being 'weakened.'  He isn't."

On the other hand, you have a quite full plate with the kids and the killer commute.   An old AA bumper sticker used to say, Easy Does It. (I never needed AA, but loved the stickers.)  AA, and The Eagles great hit can't both be wrong. Start slow and ramp up, but only when you feel like it.

 

lindary

Max Former Hodgkins Stage 3 said:

Common Route

Vanessa,

Your treatment pattern is a common one, both for the initial two drugs and then the Rituxan mainenance.  I would have expected some replies by now, but you can look around at old threads regarding what others wrote in the last year and perhaps get a feel for things.

I did differing drugs, and never did a maintenance routine, but what is common to pretty much everyone is that strength slowly returns. I was back at work, which involved a fair amount of physical labor, within a month of ending  six months of r-abvd.  Not fun, but I managed it, and Ihad been totally incapacitated while on treatment.

I would not assume that you getting sick was "caused" by returning to full time.  My wife asked my oncologist something about my "weakened immune system" once, after treatment.  The doctor replied, "His immune system is as good as anyone's.  If a person has a normal white count, they have a normal resistance. Don't buy into the old wive's tale about being 'weakened.'  He isn't."

On the other hand, you have a quite full plate with the kids and the killer commute.   An old AA bumper sticker used to say, Easy Does It. (I never needed AA, but loved the stickers.)  AA, and The Eagles great hit can't both be wrong. Start slow and ramp up, but only when you feel like it.

 

Getting back to work

I am one that never really took off from work. Then again, I can work from home and my job involves spending the day sitting, at a desk, on a computer.  So I did 6 cycles of R-Chop and 3 cycles of Rice and hardly took a day off. My kids are grown and out of the house but my drive to work takes about as long as yours does. With each cycle I had several days after treatment where I worked from home and then the rest of the days in the cycle I went into the office. Some days I dragged myself into the office but by the end of the day I felt better. Even though I sit at a desk most of the day I do get out and move around as much as I can. When the last treatment was over (Oct 2015) I was back in the office every day. I wouldn't say that I felt stronger each day but I will say that by the end of a week I would feel better than I did the previous week. Maybe it was jsut a baby step but every little bit counts. One thing was how long it took me to get ready in the morning. 

Now I am looking at Stem Cell Transplant with 4 weeks in the hospital. I am setting up a personal schedule to take 15 min walk 3 - 4 times a day. I am sure there will be days when it will be hard to do it but for me it is the only way to keep me active. Oh, I will be working remotely then too. I know it's nuts but this way I can stay in touch with what is going in there, keeping my mind off how I am feeling and keeping my mind active too. 

But in the long run it is a matter of taking one day at a time. I have had days that werent better or as good as the previous day but as long as by the end of the week I am better than the week before, I am glad. 

Good luck Vanessa. You will get back to your routine eventually. 

Archie3

It's funny, but I was

It's funny, but I was thinking about this the other day.  I'm about to enter cycle 4 of 4 of ABVD and I've been working from home.  However, on the week of my treatment - when my counts are rebounding, I try and spend a couple of days in the office, which means a 45 min to an hour commute each way.  Any EVERY time I do this, guess what?  I feel lousy and have a slightly elevated temp.  I know we're kind of apples an oranges in terms of where we are in our journeys, but I figure there's something to it.  

lindary

Archie3 said:

It's funny, but I was

It's funny, but I was thinking about this the other day.  I'm about to enter cycle 4 of 4 of ABVD and I've been working from home.  However, on the week of my treatment - when my counts are rebounding, I try and spend a couple of days in the office, which means a 45 min to an hour commute each way.  Any EVERY time I do this, guess what?  I feel lousy and have a slightly elevated temp.  I know we're kind of apples an oranges in terms of where we are in our journeys, but I figure there's something to it.  

Working

That is funny. For me I felt fatigued when going into work. Especially after the last couple of cycles of R-Chop I would say I felt lousy but no fever. By the time I went home I felt great. I have no idea how things are going to be after the SCT. I do know that I will have to stay home for a couple of months duirng wich time I'll be working from home. I am sure that the first day I go into the office will be tough. 

Sal0101

lindary said:

Working

That is funny. For me I felt fatigued when going into work. Especially after the last couple of cycles of R-Chop I would say I felt lousy but no fever. By the time I went home I felt great. I have no idea how things are going to be after the SCT. I do know that I will have to stay home for a couple of months duirng wich time I'll be working from home. I am sure that the first day I go into the office will be tough. 

Working during treatment

i worked full time through my 6 R-chop and 3 methotrexate treatments.  Being able to work from home the entire time definately helped. I avoided all the sick people in the office.  I was very tired and I think had I gone into the office I wouldn't have made it a full day.  There is a big difference working in a quiet place all day compared to a busy office.  Being able to continue working was huge for me.  it kept my mind active with stuff other than lymphoma.  The 3 methotrexate treatments meant 4-5 days in the hospital.  By the 3rd treatment I had my IT guy set me up so I could work with my I-pad from the hospital.  I couldn't do everything because of course I didn't have a lot of other equipment and paperwork that I needed. I cleaned up a lot of stuff that needed to be done but always pushed back because it wasn't as important.  I've been back in the office full time now for the last 2 weeks and am pretty tired by the time I get home.  It's a happy tired though!!   Lindary, you sound like a hard worker as I am.  Take it easy though! I'll be thinking about you as you go through your SCT And working right through it! 

Sharon

lindary

Sal0101 said:

Working during treatment

i worked full time through my 6 R-chop and 3 methotrexate treatments.  Being able to work from home the entire time definately helped. I avoided all the sick people in the office.  I was very tired and I think had I gone into the office I wouldn't have made it a full day.  There is a big difference working in a quiet place all day compared to a busy office.  Being able to continue working was huge for me.  it kept my mind active with stuff other than lymphoma.  The 3 methotrexate treatments meant 4-5 days in the hospital.  By the 3rd treatment I had my IT guy set me up so I could work with my I-pad from the hospital.  I couldn't do everything because of course I didn't have a lot of other equipment and paperwork that I needed. I cleaned up a lot of stuff that needed to be done but always pushed back because it wasn't as important.  I've been back in the office full time now for the last 2 weeks and am pretty tired by the time I get home.  It's a happy tired though!!   Lindary, you sound like a hard worker as I am.  Take it easy though! I'll be thinking about you as you go through your SCT And working right through it! 

Sharon

Working

You are right Sharon. We are very much alike with our approach to work. I too have low priority tasks I've been pushing off and plan on doing them while in the hospital and when I am first back home. Since I am going to be in there for 4 weeks my oncologist has made it clear that I must take a 15 min walk 3 - 4 times a day. So I am setting myself a schedule each day that includes taking 4 walks. I also limit my work day to how long the battery in my laptop lasts, about 6 hours. Everything in moderation.

mickelfren

Fatigue

This is my second round of Cancer. I have indolent Non-Hodgekins. This time I had a severe iron deficency. I was in bed 24 seven for over a year, at one point I could barely stand up. I have adhd, suffer from depression and PTSD also. I think I was stage three no major organs involved. I had iron IV. 18 months have passed and I'm finishing my last treatment with Rituxan for a total of 16 traetments. I go back to watch and wait. I'm 58. Despite all my mental health problems I always had some exersise in my life. Now I'm having problems with extreme fatigue and thinking in general. I suspect the cancer and being iron deficient for a long time has done that. I can do self care and I am walking once a day if I can. I get cramps and stiffness in my back and legs. When I started Rituxan I had an initial reaction of rigors and I started getting stiff necks. I'm wondering if anyone else has has been diagnosised with Cronic Fatigue or had problems with Rituxan. By cronic I mean extreme muscle weakness and confined to bed for most of the day. This isn't just the depression. I take Adderall which helps with concentration but anxiety and confusion are disturbing.

Sal0101

lindary said:

Working

You are right Sharon. We are very much alike with our approach to work. I too have low priority tasks I've been pushing off and plan on doing them while in the hospital and when I am first back home. Since I am going to be in there for 4 weeks my oncologist has made it clear that I must take a 15 min walk 3 - 4 times a day. So I am setting myself a schedule each day that includes taking 4 walks. I also limit my work day to how long the battery in my laptop lasts, about 6 hours. Everything in moderation.

Walking

Linda,  there is something different about walking In the hospital and walking at home after work, I'm not quite sure what it is but I know that you can do it! Walk, talk, walk talk, perfect combination!   4 weeks might seem long, but it really isn't.  I'm the billing manager for a group of ophthalmologists. A month goes by so fast it's unbelievable. You are strong!

Max Former Hodgkins Stage 3

mickelfren said:

Fatigue

This is my second round of Cancer. I have indolent Non-Hodgekins. This time I had a severe iron deficency. I was in bed 24 seven for over a year, at one point I could barely stand up. I have adhd, suffer from depression and PTSD also. I think I was stage three no major organs involved. I had iron IV. 18 months have passed and I'm finishing my last treatment with Rituxan for a total of 16 traetments. I go back to watch and wait. I'm 58. Despite all my mental health problems I always had some exersise in my life. Now I'm having problems with extreme fatigue and thinking in general. I suspect the cancer and being iron deficient for a long time has done that. I can do self care and I am walking once a day if I can. I get cramps and stiffness in my back and legs. When I started Rituxan I had an initial reaction of rigors and I started getting stiff necks. I'm wondering if anyone else has has been diagnosised with Cronic Fatigue or had problems with Rituxan. By cronic I mean extreme muscle weakness and confined to bed for most of the day. This isn't just the depression. I take Adderall which helps with concentration but anxiety and confusion are disturbing.

Geeze

Welcome, mickelfren !

I see that you just joined. I wish you had found this site years ago. I hope it is a source of comfort and assistance to you.

I am one year your elder (currently 59), and was struck at how much we have had in common.  Two years after normal labs following a lot of R-ABVD, I became extremely anemic. The doc put me on infusion-iron, and then OTC supplements. He tested me for many possible causes for the anemia (even a  colonoscopy), all negative.  The anemia cleared, and to this day he has no idea what caused it.  When I was on chemo I learned that numerous regulars at the infusion center came just for iron IVs. None of them had cancer or had ever had cancer. Low iron, even in people on normal diets and without serious disease, is apparantly not too uncommon. One  woman had been coming in once a month for iron for about ten years.

Anemia causes fatigue mostly because the body cannot make enough RBCs, which it turn leaves the patient oxygen-starved.  I have other lung disease issues, which makes this worse.  I also have extremity-weakness, my legs swell a little, and feel like bags of concrete at times.  I take a diuretic, which helps some.  Eat leafy greens: collards, spinich, as they are extremely iron rich.

I would recommend that you schedule a CONSULTATION with your oncologist, a visit paid for just to talk out this problem.  That way, they can't rush you out the door, the way most doctors do most of the time.  When I got diagnosed with the seconary cancer (prostate), I wanted to speak to my oncologist about whether he thought radiation or surgery was a better route to take, and I mentioned this to my oncology N.P.  Out of the blue, the doctor called two days later, and we discussed this in good detail. I fould his call very thoughtful. Then, a few weeks later, a bill for $150 arrived.  Consultations cost money, but I found it well worth it, in the big scheme of things. 

Have your doc review all of your meds in detail. It is quite possible that something you are taking or have taken is causing these problems.

max

 

lindary

mickelfren said:

Fatigue

This is my second round of Cancer. I have indolent Non-Hodgekins. This time I had a severe iron deficency. I was in bed 24 seven for over a year, at one point I could barely stand up. I have adhd, suffer from depression and PTSD also. I think I was stage three no major organs involved. I had iron IV. 18 months have passed and I'm finishing my last treatment with Rituxan for a total of 16 traetments. I go back to watch and wait. I'm 58. Despite all my mental health problems I always had some exersise in my life. Now I'm having problems with extreme fatigue and thinking in general. I suspect the cancer and being iron deficient for a long time has done that. I can do self care and I am walking once a day if I can. I get cramps and stiffness in my back and legs. When I started Rituxan I had an initial reaction of rigors and I started getting stiff necks. I'm wondering if anyone else has has been diagnosised with Cronic Fatigue or had problems with Rituxan. By cronic I mean extreme muscle weakness and confined to bed for most of the day. This isn't just the depression. I take Adderall which helps with concentration but anxiety and confusion are disturbing.

Anemia

I have had anemia most of my life, even with taking iron tablets. When I had a hysterectomy my dr felt that i would not need the iron pills but I did. She believes it is because my body is now dependamt on the pills. Not sure if it is helping with the cancer caused anemia.

 

Slowery

Working during Maintenance

I wasn't fortunate enough to be able to stay home during my 6 months of treatment. I am starting my maintenance next week, I am hoping that the fatigue will not return! The last month has been wonderful.