Living with incurable cancer - incurable patients only

This group is specifically for people with an incurable or terminal diagnosis. Whether you need to talk about dying, or about making the most of your life, you can discuss your feelings openly here.

To chemo or not to chemo

MCLkid
Posted by

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

MCLkid
Educating myself about this disease.
daloni
Posted by

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

MCLkid
Posted by

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

MCLkid
Educating myself about this disease.
ColeD74
Posted by

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. 

ColeD74 
daloni
Posted by

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

daloni
Posted by

PS I now realise they are one and the same. 

MCLkid
Posted by

Dear Daloni,

Does the U.K. have an equivalent to goodRx.com site? Provigil is worth fighting for.  It enhanced my quality of life. You would need your gp or oncologist to prescribe and then purchase out of pocket. 

You deserve the best life you can have.

Hugs,

Millie

MCLkid
Educating myself about this disease.
ColeD74
Posted by

I was on the slow release of Ritalin which worked well. But I had a procedure in which long acting or slow release medication goes through my system to quickly. So had to switch to the short actint’s great to have questions from all over sometimes. But sometimes you hit a wall too just because different laws and regulations, can mean different drug protocols and practices! So what may be aable in the UK may not in Canada. Ugh forgot the emojis go wonky on here. Anyway hope you find something that works. 

ColeD74