To chemo or not to chemo

Hello all

Quality of life - what a difficult conversation it is. It's hard when there are days of great health followed by days of fatigue and sickness. We probably all have our own thresholds don't we for measuring quality.  My oncologist has always stressed quality. Thanks for this thread - it's really helpful to hear everyone's view

Xx

Hi Everyone, 

I am on round 2 of 4 infusion & tablets regime at the moment. I feel pretty rubbish and think to myself that I don’t want to be doing this for the rest of my life.

But when I am off the treatment (before this treatment I had 9 months of nothing as I was asymtomatic) I very quickly forget how bad it was.  During the good times I think I would always say yes to whatever treatment is offered.

I am by no means an expert, certainly not compared to lots of you awesome people who have been through so many treatments and side effects.  I am relatively new to this so maybe I will change my mind about it.

I have said to a few close friends that I would always choose quality over quantity but I can’t help feeling I owe it to everyone who loves and needs me to do whatever it takes to live for them.

I feel I would also choose quality over quantity but it’s very subjective.There was a point when I felt the treatment wasn’t worth it but between the oncology team and GP practice they sorted me out. I’m very tired at times but if I pace myself I can do most of the things I enjoy so it seems worth it. At what point does that change? I honestly don’t know but I feel (hope) I will recognise it if it happens. 

I’m so grateful to you all for giving me a safe space to discuss these very difficult things. I’ve got friends who will listen but I’d rather enjoy my time with them. ️

Good morning everyone,  I too am so very grateful for every person's input into this discussion. Thank you.  

One of the things that has resonated for me to think about, from what a few of you have said, is that you have registered that your standard of "quality" is not the same as it was, but that you've moved with that, sometimes after titrating treatment or sometimes because "quality" in your mind has shifted.  It's been very helpful to consider quality in light of your comments.

I asked my husband what he considered quality of life with regard to having me around.  He said that having me around "present" was quality.  So quality for him had to do with being with my family in meaningful ways - conversations, being able to be interested in others,  being "with".  I found this interesting because being in a wheelchair I have already compromised my "quality" of life.  I don't walk on beaches or climb mountains or swim or cook, or garden.  And fatigue has always been a shadowy factor.   

There are already so many places I don't go because of limitations.    BUT I do have coffee with friends, and I do interact and am interested in others' lives, and I do have great conversations with my kids and I do engage with my grand daughter.   With regards to the cancer  I may need a sleep (I loved your idea Tinalay of the three parts of the day morning/afternoon/evening) in one of those but there is still quality in the others.  I guess as I am writing that for me it's HOW present I can be that is the question.  How non present am I prepared to be in order to be present.   I'm so very grateful for all the things you've said.  I can feel my mind still musing over your comments even though I haven't mentioned you by name.

Love.  In bucketloads.

Robyn x

Dear all,

i am touched by the thoughtful insights in these posts. I share the problem of decision making of my treatment. I have mantel cell lymphoma and prognosis is 2-3 years in older patients. I know I’m going to die one day but I do try to continue day to day and live my life to the best of my ability. A major side effect  of my medication is fatigue. I also hear in many of your posts mention fatigue as a lingering side effect after treatment. 

I finally asked my oncologist if there were medications to combat fatigue and was surprised when he said yes- but he had never offered medication even when I had reported extreme fatigue.  

After I asked, he prescribed one but It gave me the jitters. The second one worked well enough to let me continue a better life on most days, it’s not perfect but it helps.  I still have some days I just rest.  Do your gps or oncologists ever offer to treat the fatigue in the U.K.? 

One thing my cancer has given me is a better focus on what to do with the time and energy I have left. I made peace with others and try to help when I can. That focus is indeed a gift. 

Wishing everyone happiness and the best life possible.

Hugs to all

Millie

Hi

No I’ve never heard of specific pharmaceutical remedies for fatigue and nothing has come up in my research when I have looked into managing fatigue. What did he offer you? 

Xx

My Dear Daloni,

This is my experience.  The first fatigue medication was methylphenidate HCL (Ritalin) it helped the fatigue, but made me nervous and jittery.

The second fatigue med was from my primary care (aka gp) and it was modafinil (Provigil)- it was not covered by insurance since insurers do not consider fatigue caused by cancer meds as something needing treatment (lets give them dose of our meds and see if they  change their mind).  Out of pocket was very expensive ($1,400/month),  but went to website Goodrx.com where it was $45 for a 2 month supply. (How something be 33X more with insurance???)

Mind you, (you know me) I was somewhat of a pest in getting it, but I figured if they were giving me meds that resulted in extreme fatigue, they were responsible to fix it.  I want to fully live until I die.

For background, Provigil is the drug developed and given to American Special Forces to help them stay alert in Afghanistan... guess occasionally something comes from war that is useful elsewhere. 

Anyway, Provigil helps me a lot, I can now focus and work on projects.  I take one a day when I am feeling fatigue, it lasts about 8 hours, so usually in the AM.  Usually take a day or 2 off/week.  A note of caution, I make sure I eat regularily since it can decrease appetite. 

Hugs to all,

Millie

Fatigue is one of the most frustrating things to deal with. This has been my issue even lasting effects after my first cancer and chemo treatment at the age of 13. I was on modifinil 2 a day at a cost in Canada of $100 a month no coverage. Tried to get coverage under exceptional drug status but was denied. I was switched to Ritalin but same as you it makes me very jittery and a huge crash when it wears off.  I take only if I absolutely have to because I have a busy day. With the MCL I currently sleep if I’m home I’m still waiting for first line of treatment.  I know my fatigue is going to get worse when they decide to start treatment.  Anyway take care all. 

Thanks, both of you. How very interesting. The routine reply to requests for help with fatigue here in the U.K. seems to be “you just got to tough it out. Exercise and rest”.

 I’m aware of methylphenidate and its uses and abuses as as both my girls are prescribed this for ADHD. Did you know there’s a slow release version which might avoid the jitters and crash scenario? I’m fairly sure I would struggle to get it prescribed here in the U.K.  I shall look in more detail at the other drugs you mention. 

Xx

PS I now realise they are one and the same.