Hi. Thank you all for your lovely replies to my earlier post.
I have seen my hematology consultant and will be starting on FCR treatment for 5/6 months starting on the 4th Febuary. My consultant has talked me through the treatment and explained why this is suitable for me. I have an appointment on the 25th January to meet the hematology nurses and other staff who I will be seeing a lot of over the next few months.
One question I have please is reference time off work during treatment. Do I try to work between treatments or just stay off until treatment finishes. Thank you. Louiej x
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Louiej
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FCR affects everyone differently depending upon comorbidities and general health.
Many find that after the first week of treatment they feel pretty down and tired as the treatment begins to take effect. During the next weeks of the four week cycle things getter better and many go to work again.
What you must take into account are the following:
FCR affects the neutrophils which are the cells that fight infection this means that not only will you be immunocompromised but if you become nuetropenic (Nuets below 1 with below 0.5 being concerning) this could be very serious if you get infections and could be life threatening. This will mean a special diet details of which will be given to you when you start treatment just in case your Nuets fall.
Everyone is affected by treatment differently. Some sail through with no side effects others find they suffer from some or all of them from time to time. Details of possible side effects will be given to you by the specialist nurse so you can look out for them.
You will be given emergency numbers for your specialist nurse don't be afraid to use this facility for everything. I was told that I was a member of a special club and had direct access to their facilities for anything that I was concerned about do not hesitate to use these!
You do not say what sort of job you do? However, if it entails dealing with children or direct with the general public you will need to be very careful about avoiding infection.
All in all you will have to wait and see how you react to the treatment and organise your life around this. You may be one of those that have an easy ride! However remember you are the priority, work closely with your medical team throughout the treatment and you will be fine!
Here's wishing you good luck and a long remission.
I can't add to the comprehensive advice Geoff has given you Louie but I wanted to wish you the very best for your treatment and may it be uneventful and successful.
If you can, take this time for yourself and don't take any risks.
I'm in a similar position to you, about to start treatment but not knowing how much I'll be able to work. Very difficult to plan ahead when everyone reacts differently.
I hope it all goes well for you though and any side effects minimal.
I agree it mostly depends on what you do and how flexible your job is. I am almost done with round 5 of FCR (Lite though) and some months have been easier than others usually for me, I go the first week of the month for 3 days T-Th (no chance of working those 3 days due to travel time & time at the infusion center) but I could work M before. Usually, I couldn't work Friday for sure. Then one month after I have a major sinus infection the week after, one I was super tired, then one I had a major upset stomach. Last month, I just was tired/light headed. Not too tired though.
Due to my job and their lack of flexibilty and my being tired most of the time still, and the way my disability is (and the fact I have to go back to the infusion center weekly for PICC changes/blood draws) I couldn't work at all during this time. I am a primary school teacher and I can't come and go as I please...
FCR is what I had, and I finished in May of 2015. Although I'm retired, I could have continued working for all but maybe 3 days of each cycle. Those were tired days! Treatment went very well, and I continued the usual...long dog walks, gardening, household chores, cooking, etc.
The only lifestyle change I had was learning to be very, very careful about exposure to germs and viruses. Oh, and my hair got a little thinner, and has grown back thicker than before and curly😊
About 4 months after completing treatment. It's still thickening, and the texture is different because of the curl. I keep it quite short and its trouble-free! Haircuts every 3 weeks.
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