Post treatment fatigue and cognitive issues

Hi Steve, I can relate to your current problems.

I finished 3x21 day cycles of Chemo 5 weeks ago and since the last cycle ended, I didn't bounce back as I had after the first two. My Dr has told me there is a cumulative effect from the Chemo and 100% of people who attend Clinic complain of fatigue.

For 3 weeks I was only able to make trips to the kitchen and bathroom, then slowly I was able to walk around the house, building up from 5 minutes to 30 minutes (just today). 

The pain and weakness in my calves started on day 3 after the last Chemo, first time experiencing it, and apart from the daily walk I am only able to rest them. MST has not helped with the soreness but I do think Brufen is taking the edge of. 

I have 7 weeks of Chemoradiation to come shortly and I am concerned as to how I will manage getting to the car and travelling for it. Fortunately I have a Clinic appointment on Tues coming and I may find out more on the cause and any better treatment on offer. 

Just wanted you to know that I can identify, but unfortunately can't proffer any solutions. 

Tina

SteveyN said:

Cognitively, I am finding it hard to remember words and I get overloaded trying to work out how to do and plan things.

Pain is manageable and I am 100% RIG fed. So, my main issues are just about day to day living... getting back some of what I was before treatment.

Hi Steve. I escaped chemo so can't help there but I know about radiation fatigue. It's like no other. It will take some time for your body to heal. RT has a residual effect for 2/3 weeks so it's still working in your body so that's why you feel so knackered.

Recovery won't really start till that period is out of the way

Later on what I got was bouts of sudden tiredness that would come out of the blue and poleaxe me. It was six months before I was out of this black hole.

Unless we have Proton, the radiotherapy beam affects our brain where it exits. I was losing common words....just couldn't find them at times. My oncologist told me this might account for some cognitive disability but it's usually short lived. 

To be truthful I wasn't almost my old self till a year

Hi Steve

I identify strongly with what you are going through the same as the others. After I finished radiotherapy it was an effort to even walk to the post box in my front garden. I got breathless really quickly and had to hold onto my husband's arm when I had to go to any appointments as I was afraid of falling over. It was so frustrating even taking a shower was a huge effort. I also found concentrating really hard and could not read or follow a T.V. show. I was very passive for a few weeks which was not like me. I had been quite fit before the radiotherapy so found it hard to deal with.

The good news was that slowly bit by bit things improved and one day I suddenly realised that I had energy. It was a wonderful day and I did not look back.

It is 4 years since my radiotherapy and things are great now and they will be for you. You just can't rush things.

Lyn

Hi Steve - I am post surgery and rt/chemo some several months now and still getting tired so pretty normal. Calorie intake can be an issue but less so if rig fed I assume, body needs a lot of internal energy to recover. I have a weakened left thigh from graft (we think) and hoping that if nerve damage will recover eventually. I know I had to cut back on exercise for a while to keep fuel deficit on right side and focus was an issue too, pleased to say most of it is recovering.

Hi Steve You are going through the motions as the side affects can be different for us all . I was just happy being able to have my medication and get to the sofa for the day. I had barbers chair syndrome and tinnitus but they are fine now . Just take one day at a time and walking a bit really really helps in your recovery big time . All the Best Minmax 

Hi Minmax and everybody, hope you don’t mind me jumping in on this chat but how long did you have tinnitus for? I’m 9 months post chemo/radiotherapy and just noticing that energy levels and eating is so much better but I still have the tinnitus. It doesn’t really affect me and at times I forget but just out of interest wondered how long it can last. Many thanks Debbie x

Hi all,

Thanks for your supportive comments.

I have a dramatic update...

Last Saturday things came to a head and I started to feel that things were really going wrong. I dialled 999.

It was the right thing to do. My electrolytes were all over the place. This was causing erratic heart arrhythmias.

I was blue-lighted to the hospital and admitted to the acute ward.

In the end, I was there until Thursday (so, six days). My symptoms: fatigue, cognitive problems/confusion (I had weird dreams, imagined loud sounds jumping out from one side and a delirium state - a bit like flu when you are a child - I always new what was real, but it was overlaying reality), tingling and weakness in the arms and legs (with strange jerky motions) and increased urination.

Apart from a fatal heart attack, the risks are that the tingling progresses to paralysis (hypokalemic periodic paralysis) which can leave you unable to move your arms or legs. I can imagine this, as just before hospitalisation I was rolling around on the floor trying to get my clothes on and then being left exhausted.   

My magnesium was low but the most serious factor was low potassium (hypokalemia) which was down to life-threatening levels.

After several days of IV potassium supplementation (including at various stages the possibility of moving to the ICU unit for a neck catheter for direct potassium-to-heart therapy - glad that was avoided!) things slowly improved.

*** Anyway, the important bit: the cause was my cisplatin chemotherapy (last dose five weeks before this happened). ***    

Apparently, cisplatin is well known for causing dangerously low potassium. It is thought that damage is done (temp or permanent?) to the kidneys. There are tubes in the kidneys that get damaged by cisplatin. These tubes (instead of retaining potassium in the body, as intended) excrete the potassium into the urine. Knowing this, I am surprised that the oncology team do not test all chemo patients, after treatment.   

As we keep being told by our teams that we will feel worse in the weeks immediately after treatment, this is definitely something to be aware of.

After supplementation, my potassium was bought up above the critical level, but still below average range.

I still feel ill and I am sleeping a lot. My arms and legs are recovering quite fast. My bloods will be checked again, next Monday.

We should watch out for anyone with these symptoms. 

Best wishes to all

Steve

Hi Chiron its over two years and I still have Tinnitus but to be honest its no big deal , its ringing in my left ear and I can't really feel my right ear so doesnt seem to be ringing in that one 

Hi Steve  thanks for the update, at least things seem to be under control  

SteveyN said:

We should watch out for anyone with these symptoms. 

Renal damage is a well known side effect which is why lots of fluids are wrapped around each infusion and blood potassium is monitored through treatment. You’ve just been very unlucky. I hope you make a full recovery. 

Hi Steve this is interesting as I developed heart failure after my treatment of 4 cisplatin I was suppose to have 6 but developed some life threatening illness as was admitted to hospital. I looked at a letter recently and it actually says excellent renal function on the letter . So it obviously affects us differently