Cancer Related Fatigue

[DDep]

I want to share a good reference I have been using for some time in order to help understand the feeling of tiredness or fatigue cancer treated patients go through. It may be helpful to many of us affected by Bladder Cancer eg. from TURBT to Cystectomy.

I still make the effort to get out and exercise (particularly cross-country ski – which I love doing). However, I still cannot shake this constant feeling of tiredness.

Also, what I found difficult was to have my family and friends really understand how I feel.

This Australian booklet seems to be a good resource:

http://www.petermac.org/sites/default/files/Patient_care/Services_patients_families_carers/Cancer_information_resources/Info sheet_practical ways of dealing with cancer related fatigue.pdf
(Or ask Mr. Google by cutting and pasting “Cancer Related Fatigue Peter Mac” in the search field (without the quotation marks of course).
The link should be titled “Practical ways of dealing with cancer-related fatigue”)

Although it is a pdf, it is over 75kb so I could not attach it directly – Hence the link.

The document covers (Page 5) “Fatigue Across different cancer treatments” including: Chemotherapy, Radiotherapy, Surgery, Hormone therapy as well as Immunotherapy. It may be helpful for all of us who are dealing with BC no matter what the level.

For example, on a personal level, because I have been getting BCG treatment it states:
“Immunotherapies
These are treatments that stimulate the body’s immune system to attack cancer cells. They include BCG (for bladder cancer) or interferon (which is used to treat many types of cancer). Almost all people who receive immunotherapies report very high levels of fatigue, which for some people can feel overwhelming.”

In addition it covers: Moods, “Chemo brain”, Liesure, Sleep etc. in short, quite a bit.

So, at this moment, as I go through my 6 month BCG maintenance treatment, I shared this, as I said, with my family.

Hope you find it useful as well.

God Bless

DDep

[marysue]

Hi DDep!

Thanks as always for all the scientific information that you post. It amazes me all the stuff that you find.

As for BCG fatigue, I found after the first round of 6 in 2008 it took almost 6 months for me to feel completely normal. At first I was tired all the time and then would have days where I felt a bit better alternating with still tired days and gradually those good days became more and the tired days fewer.

From November 2010 – January 2012 I did 15 BCGs, a second set of six and three sets of three and found that 2011 was pretty much a write off in terms of energy levels. I was very tired most of the time despite a lot of sleep and felt very drugged. “Chemo brain” some call it. I was frustrated as well but just had to accept the fact that I’d been through a lot and curtailed my activities to match my energy levels. I rested and exercised GENTLY and found that I was less tired. In other words I just did what I could and had to let go of the rest. As time went on in 2012 I found myself feeling better but had residual side effects well into 2013. I would just have “tired” or “achy” days just out of the blue. It was the same for the brain thing. I found it took time for the fogginess to clear and get my thinking cap back. Again I had good days and bad days. Now in 2016 it is about 98% good days.

Mind you I had menopause interfere with this as well but it is too difficult for me to be able to judge exactly how great a role this played in the whole process. While this whole thing really sucked the big blessing is that I got to keep my bladder and have been cancer free since September 2010 and fully plan to stay that way.

I’ve had several members of my support group report similar to my story and most of us are fine and just need to be patient and let the effects wear off.

The other complicating factor for some is whether they have other health issues that require treatment or the use of meds. I’m fortunate in that I don’t have this issue but it will have an effect on how well and fast one recovers.

Just my thoughts….(((((HUGS))))))

[Jack Moon]

My experience may be different than many that have undergone BCG treatments. During my 1st 12 treatments I had no fatigue during or after the treatments, actually no side effects except urgency and burning for about 24 hours after each treatment. But I also had 2 recurrences during the treatments. From treatments 13 to 30 fatigue set in and lasted for several months after the treatments. BUT I have never had a recurrence since treatment 13.
So in my mind fatigue can also be a good sign in my case.
Great post DDep,
Jack

[marysue]

I have heard that debate that the more side effects you have it means a better success rate but I don’t have any stats to back up that claim. Dr. Hyndman said at the Calgary Patient meeting last year that they are close to completing the genome sequencing thing and that in itself will help doctors to some degree determine how well a patient might respond to treatment. I’m hoping that that might lead to more personalized treatment plans and of course an overall greater success rate.

[Author]

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