Spouse Diagnoised with CLL

[AngK]

He starts FCR treatment Friday, will he be able to work the week after?

[Newdawn Administrator]

Hi Angk,

Sorry to hear of your husband's diagnosis and need for treatment. Answer seems to be that people react differently and it's hard to predict whether he'll sail through it or be dogged with symptoms like fatigue and nausea. The kind of work he does and exposure to other people is also an important issue because he may be at greater risk of acquiring infection.

Is it essential that he continues work or could arrangements be made to see how he reacts to treatment? Having to work must place a lot of additional pressure at an already stressful time. Could he do any work from home?

Hope all goes really well with his FCR.

Newdawn

[AngK in reply to Newdawn]

He is a police investigations, he can take time off he is still in denial and feeling like he will only need two days off. He has been fighting phemonia for three weeks now so I'm really worried.

[Fowey2009]

It seems to depend on each individual. My husband planned to work for 2 weeks each cycle, which worked for the first 2 cycles until the treatment date had to shift as his neutrophils were too low to start treatment on the specified date for the 3rd cycle. That threw all his plans out.

His energy levels improved almost immediately when he started FCR and it seemed to help him to be able to work. As Newdawn says, do be aware of infections (having said that my husband has a very public facing job and did not get an infection although he did warn everyone to stay away from him if they had an infection)

Good luck!

Beryl

[Jenferdog]

HI, I am sure you will get lots of good information and advice on this brilliant site. My husband was diagnosed in August 15 and has his third cycle tomorrow. He had the first day (while in hospital having the IV) off as it took all day, and then was fine and able to work for the next few days. Days 4-7 he feels a bit off and tired but that usually is over the weekend. He works from home most days though so that could be different but has travelled away during the cycle and been fine. I would guess it depends on the job and I believe people react differently. For information on what what happens in hospital see my post by clicking on my username and you will find it listed.

All the best to you both.

Sue x

[rlyndecker]

I agree it totally depends on who you are and what you do. I teach so there was/is no way I could do it. For example, I go for infusion this week T-Th and even if with the way my disability etc. worked I could arrange to do it so that I could go teacher Fri. or next week, I would NEVER be able to stay awake all day (at least I doubt it) and this will be my 5th round.

That being said, I definitely have TONS more energy than I did 5 months ago but I still nap almost daily and with the amount of energy and stress my job takes, I just think it would be very difficult.

I'm not sure if I will even go back after the end of Chemo this year, I may just give my body time to heal...

[Cammie]

My view is that the week after treatment is the one to avoid the possibility of picking up infections. This is because FCR is usually the infusion of rituximab on day one then the chemo tablets during the next days. This means the week after is the week where the chemo is working. Although whilst on treatment infections can be a problem all the time depending upon the neutrophil reaction.

My own experience was despite being very careful I developed nuetropenic sepsis and was hospitalised.

Whilst everyone reacts differently to treatment On FCR?. It is essential your husband takes precautions to avoid infection so it's not only about how he feels. In your case and has he has already been fighting infection this is even more important. In fact I'm surprised he is starting a treatment regime if he is infected? He may also have to ensure he is on a special diet if he becomes nuetropenic which is highly likely.

You will need to ensure he does not fall foul of hero syndrome that is trying to carry on regardless and he needs to understand that treatment will diminish an already suspect immune system.

Work closely with your specialist nurse and medical team. Ask their advice carry out their instructions .

Here's hoping all goes well.

[kady1270]

My husband was diagnosed 10 years ago and went through FCR. It was pretty hard on him, they had to stop after 4 cycles. Fortunately, that was enough for him to achieve a complete remission. They now have a pill, Ibrutinib which can be taken on a daily basis in lieu of FCR. This was only approved about 1 1/2 years ago. When my husband came out of remission, they put him on this and it has been very successful. Have you discussed the possibility of this with your doctor? I know this is a very scary time for you, however, as you can see, people live many years with this disease and treatments are getting better and better.

[kady1270 in reply to kady1270]

I forgot to mention, my husband gets IVIG infusions every 8 weeks to build up his immune system. This has been amazingly successful, he gets sick much less frequently than I do. We are treated out of MD Anderson and this was their recommendation early on.

[Calopteryx]

Hi,

I am approaching treatment, and I asked my consultant exactly the same question- would I be able to work during treatment. She said what I expected - that everyone reacts differently, but also said that if you are well enough to work it can help your recovery from treatment because you have something to focus on other than treatment. The key is the flexibility of the job and of the employers. As several others have mentioned it is the risk of infection that worries me most. Avoiding large meetings, public transport and ill staff will be my challenge, as well as finding a compromise with my employer that allows me to work when I'm well enough, but not when I'm too poorly. I know of two other members of staff who have worked through chemo (different type), so I'm hopeful that there is a willingness to work with me.

I wish your husband the best of luck and a successful and uneventful treatment.

[AngK]

Thanks for your thoughts .. I hope the best for you, our goal is to keep him active as possible to keep his spirits and thoughts positive as they can be. Wednesday is first treatment so fingers are crossed for the best!

Ang

[MsLockYourPosts Passed Volunteer]

Is he in the UK,,where the rituxan is infusion, but the other two are pills? One warning I have seen is to open the pills over a bowl as they have a tendency to scatter. The other - pills or infusions - is to stay ahead of nausea. Many have advised that nausea pills should be taken as prescribed before there is any sign of nausea, as it is easier to stay ahead of it than to play catch up.