Half way through chemo

Hi Cormac and good to hear from you….. halfway is a good milestone…… let’s look fir the ready of your treatment to go in smoothly and your FL to be put to sleep for a good period of time

Congrats on your progress. Your optimism is encouraging for someone like me who just started treatment (less than a week).

From your experience, does chemobrain get less pronounced or more manageable as you go through the months of treatment?  Are there any ways to cope with it?

Thank you. Best wishes

Hi James

I keep getting told that everyone is different and that there's not much you can do to impact how treatment affects you. However, I've never been great at taking that kind of message.

I've assumed that the chemo is like the worst hangover you're liable to get, so I treat it as such.

Staying positive but pig headed works for me. I dropped all other toxins (booze, caffeine etc) do regular exercise and make a point of pushing through any set backs. Sleep helps a lot so I try to get 8 hours a night. I can't usually get it in one go so I have to accumulate it overnight which can take 9-10 hours in bed.

Those are the ways I try to deal with the fatigue which I think is the root Cause of chemo brain. The more alert you are, the easier to deal with the fogginess.

Positive attitude is often quoted. I would have been a sceptic but after 4 cycles I think there's something in it.

Whatever works for you, best wishes for the journey ahead. There's better days ahead!

Regards,  Cormac 

Oh, and the chemo brain should clear up when the treatment finishes. That's what all the literature says

Dear Cormac, thank you for your many tips and insights.

I think sleep will help a lot but since chemo I found that I had to get up many more times at night to urinate and this doesn't help with the sleep.  Maybe I need to drink less water before bedtime.

What kinds of exercises have you been doing? I have done daily walks and hope to use weights to deal with my weight loss (cachexia).

Did you experience weight loss and was it reversed during treatment?

Thank you again.

Hi James

Same problem with getting up at night. But hydration is really important. I'd rather have to get up a few times at night to stay hydrated. That's why it takes me longer to get 8 hours.

Exercise, you need all 3 types. I go walking with the dog daily and then have an exercise bike to top up the cardio. Then I do a weekly pilates class to keep muscle flexibility. I also use resistance bands once a week to maintain muscle strength. 

Weight loss is the least of my worries. With the exercise and steroids you have to take my weight has gone up. I'm actually going to have to diet after cycle 6! Currently sitting 7kg heavier than when I started chemo.

Regards,  Cormac 

Hi James M …. I see it’s your first post in the group so a warm welcome.

As for water intake, I have to agree with Cormac our water intake during and between treatments is very important (the target is about 2 litres a day) as this is the main tool you have to flush out the toxins from your body and protect your kidneys….  

I am a few years out from my last treatment fir my type of low grade NHL but I am still on some meds and one specific med has to be taken first thing in the morning and 12 hrs later before bed, 2 hrs after or before any food along with a pint of water….. this is the main way that this Med will work correctly ….. so yes a regular visit for a pee…. but I got into a rhythm with this.

Walking is one of the simplest ways to keep active…. For one of my treatments I was in hospital 6 days/5 nights on my 2 IV pumps 24/7 for over 120 hours for all 6 cycles…. But after each meal I took my chemo stand and walked around the corridors of the ward for a good 30mins….. the less you do the longer your recovery will be but also activity reduces the onslaught of fatigue to a certain degree.

Hi again James M …..

I missed you Chemo Brain question.

Chemo Brain is often referred to as Chemo-related cognitive impairment and for people it can be a real reaction to some of the strong chemotherapy’s that are used…… 

 As Cormac said ‘worst hangover’……. Is a good picture…… as I said - the less you do the longer the recovery will be….. and this is so true for our brains….. 

There are signs everywhere in my local Heamatology and SCT wards and clinic saying a week in bed is like ageing physically and mentally by 10 years…… I was turning 60 at my second Stem Cell Transplant but had a few issues with a reaction to one of the drugs so ended up in the CCU Unit and in bed for a good few weeks so I left the unit with the body and mind of a 90 year old in a wheelchair and my cognitive ability was very very slow.

I had 3 months of physiotherapy to get me back on my feet and get me active….. and I was told not to drive for about 3 months as I was not seen as fit to drive.

Hi, Cormac.

Last night, I only drank a tiny bit of water one hour before my bedtime.  My sleep was less interrupted because I got up less frequently (though I still got up more times than normal, pre-chemo) so my rest was better.  Somehow chemo makes one urinate more at night, I'm not sure why, maybe something to do with the bladder.

Chemo has given me a chemobrain but my sleep tends to be less deep.  My head is a bit foggy and slower, but not sleepy, strangely.  I think exercises as you mentioned will help with sleep so I'll try.  Good that now the weather is warmer, affording many opportunities for outdoor activities.

I'm also vitamin-D deficient due to the days I'm stuck inside pre-treatment days in wet weather.  I hope the sun will help me feel better too.

Good to know that your weight is back up so that it's possible to reverse the trend.  My BMI is still normal at 21 but I want some bulk back.

Regards, James

Hi, Mike.

Thank you for your message.  It's great to be a part of this community and share experiences and provide support to each other.

"A few years out from your last treatment" must mean you have been well and you've been treated effectively?  If so, that's very reassuring for people like me who's just started out on this journey.

One of the videos I watched said that most follicular lymphoma patients have normal life expectancy.  Hopefully with the ongoing advancement of medicine and all the things we do ourselves (eating healthy, exercise, social support), more of us can live a normal, healthy life post treatment.

Your story of walking in the corridor for 30 minutes with chemo stand is an inspiration.  I will keep this in mind.

Regards, James.