DEALING WITH FATIGUE

[Lnlc]

How do you deal with the fatigue from treatment? You know the kind when no matter how much sleep you have, you still feel tired, but not tired in a way more sleep would help. I'm sure this question's come up multiple times but I could use some help. I'm currently on Xeloda and doing well, except for insomnia. I've been on Xeloda twice before and never had this SE so I'm hoping it will eventually ease up. Fortunately, I work from home and can catch extra sleep in the morning if necessary. I'm very active (ballet/pointe/yoga) and eat moderately well--okay, full confession, still too much sugar. Any suggestions? Thanks, as always for your collective help. xoxox

[blms]

try melatonin before bed. 30 minutes and you sleep well. I only take the lowest formula, 2.5mgs. but many people need more. Start with that, if not try 5 mgs. sublingual. Are you drinking close to a gallon of water a day. That does help. Also, look up Donna Eden energy work. it definitely helps pick you up.

[TammyCross]

It is indeed a side effect of almost all cancer treatments, that sort of fatigue. I have three remedies, none of the ones that blms recommended, but most of what you are doing. Most helpful, I have to have at least an hour of exercise every day. I allow myself to collapse when I need to, climb into bed, but get up and exercise and it pulls me out of my stupor. If you are doing ballet, pointe and yoga, you are doing a lot more than I am! I am taking a live class with Movement for Life, which offers classes for cancer patients. It is very gentle and slow, and I found it not enough, but I have learned ways to make it more vigorous and it leaves me all stretched out and relaxed.

The other thing is that I take Wellbutrin. Small study showed that it is helpful for people with fatigue from breast cancer meds.

[Have-faith]

Hi. I take liquid B12 drops when I feel tired. I have been doing these drops pre cancer dx. I used to work crazy hours and heard Dr. Oz suggest the B12 drops. I tried them and believe it works for me.

I also push myself to walk. Something about some fresh air and sunshine helps lift my spirits and energy.

[SeattleMom]

You’re probably well aware that sugar can cause fatigue. Have you tried a higher dose of melatonin half an hour before bedtime? It sounds to me like you are just lacking a good night’s sleep? God bless you! 💗🙏🏻 Hope you find relief!

Linda

[USIrishcolleen]

Lnlc,

Cute post! I finished 19 sessions of radiation two weeks ago, and am just now feeling like myself again, and not exhausted. I have been having insomnia also. I think I saw that it was a SE of radiation, as well as fatigue. Med onc is putting me on Verzenio when I see him on Fri. So.... what to expect? I have heard some, not so pleasant, SE’s. Here we GO!

Best to you!

Colleen

[Lnlc in reply to USIrishcolleen]

Hi Colleen, thanks so much for the response. I was on Verzenio before my current med, Capacitabine (Xeloda). Verzenio was tough for me because of the diarrhea. I was on it for six months and after finally discovering medications that worked in controlling it (Loperamide and occasionally, Lomotil) the cancer progressed. Also the fatigue was much worse for me on that drug. Everyone is different and I wish you all the best!

[debbiedo2063]

Good morning

I know the fatigue you mean, I drink lots of water every day always have my water bottle on hand and I also find if I eat an Advocado and a handful of nuts first thing when I get up it really boosts my energy level for the morning especially. Been on Ibrance 3 cycles and getting used to the fatigue, so much energy then near collapse total extremes so I try and work around them like yourself . I think this is the new way of life.

Take care

Debra xxx

[Kdiet]

I. Have ten ounces of bone broth/day. I was tracking my nutrition and was not getting nearly enough protein. Am for 60 grams/day. Protein very important.

[mariootsi]

B12 shots and sublingual B12 seems to help me with my fatigue.

[mariootsi]

I take Mirtazapine for sleep.

[Topood in reply to mariootsi]

I take it too, and it has really helped...also helped me gain 15 pounds back that I lost on my previous treatment! I also take B complex, and walk a few miles a day with my faithful poodle....

[ChrisVict]

Well the more I walk and keep active the better I sleep. I take B complex but may have to up To more B12. So good to hear you can go back on Xeloda what did you do in between Xeloda is my last oral option plus does not have too much hair loss.

How long have you been in treatment I’m 2 years in MBC. I am concerned about running out of options.

[Topood in reply to ChrisVict]

I’m 2 1/2 years in, and have had 5 different treatments (on Xeloda now, and mostly loving it), but my oncologist assures me that there are still plenty of drugs. I suspect many of them are IV, but I’ve done pretty well on those too...except for the hair loss, of course!

[Lnlc in reply to ChrisVict]

Hi ChrisVict, thanks so much for the reply and suggestions. I've had MBC since 2013 (original non-mets diagnosis was in 1995, so that was kind of shocking). I've been on at least eight protocols since then but before this recent Xeloda I was very briefly on Piquay, to which I had a horrible reaction, and then Verzenio. I"m grateful that "recyling" Xeloda is an option. No loss of hair and I'm on macrodosing (I think that's the right term) so I take 1000 2x day with no break, which is supposed to reduce the SE. I know that eventually I'll be able to work out the fatigue issue but I've been very fortunate. With few exceptions, I've been able to live my life normally throughout the 8 years of treatment. Wishing you well!

[Gingerann1]

Hi Lnlc...what other meds have you been on? I was diagnosed in Nov and started Ibrance and Faslodex shots. At the end of my second cycle of Ibrance and fatigue and yuckiness just started this week. Got a UTI and my PC has me on a large dose of antibiotics so it may be somewhat tied to that. Starting to have trouble staying asleep as well. Dealing with the SE’s is a necessary evil in the fight but it does seem like a lot of folks have many with Xeloda.

Sending a virtual hug your way and hope you find there are other options for you. Stay strong.

[Lnlc in reply to Gingerann1]

Hi Gingerann, ugh, UTIs are the worse! Feel better!

[Gingerann1]

Sorry, my comment was for ChrisVict...

[Dragonfly2]

Hello Lnlc...I’m sorry about your fatigue.I’m on IBrance and the last few days of the chemo cycle as well as the first few days of the Off week are difficult for me. I’ve learned to just give in on those days...especially if the weather is cold and stormy which seems to aggravate my arthritis and my bone Mets. Go slow, do things that require less energy and focus.

However, I wanted to share with you and other members that taking supplements for the fatigue has become another point of concern.

cancer.org/latest-news/stud...

This link is about concerns taking certain antioxidants, especially B12 which has been mentioned as a way to deal with fatigue. When I read this I immediately dropped the CO Q10 supplement and my vitamin B12...which I had started about 17 years ago during my first chemo for initial breast cancer. Boy, did this article alarm me! Here I thought I was doing something good and it turns out I may have exacerbated my MBC return.

Please have a conversation with your Onc...this is both frustrating and alarming information...and it leaves me feeling especially fatigued this time around since I’m not taking my B12...

I’m wondering how you and others feel about this new info? Stay well!

[Lnlc in reply to Dragonfly2]

Hi Dragonfly2 -- wow! That's alarming. As it was discovered that my B12 levels were critically low, I've had B-12 shots for the past few months. I'll have a blood test on Monday at my appointment and I'll ask the oncologist about this. Thanks! Ellen

[Andibo]

I take B12 and try to move as much as possible each day. I also just do things in bits and spurts so that I don't feel to exhausted. CBD oil may help. Melatonin. I turn off devices at least 60 minutes before bed and I never watch TV in bed. The struggle is real that is for sure!

[ANNIE6449]

My GP, who specializes in integrative medicine with cancer patients, told me not to take B12 or iron when you have cancer as they may promote the growth of the cancer, similar to the article mentioned above.

I am currently on Ibrance and letrozole and she encourages me to take high doses of certain antioxidants during my week OFF only - vitamin C, fish oil. I do take other supplements regularly, particularly turmeric for muscle/joint pain and L-carnitine for energy, also recommended by my onc.

I eat almost NO sugar, haven’t for a decade. I find monk fruit the best tasting and easiest to use substitute although I have used stevia and erythritol. I bake my own goodies and never miss any of the commercial products that are loaded with all kinds of bad stuff! I have a HUGE sweet tooth, always have, but LOVE what I bake and don’t feel like I’m missing anything. There are also lots of great ice cream “substitutes” out there now. Just read all labels very carefully and don’t buy ANYTHING with artificial sweeteners!!

I find that the more exercise I get the better I feel, so I really push myself even when I think I’m too tired. Occasionally, especially during certain times in my 4week cycle, my body pushes back and that’s when I get extra rest. I do find that my usual sleep cycle is about an hour longer than it used to be. Napping makes me feel worse, but RESTING often helps me a lot (sitting with a good book or watching something interesting on my computer) for even a few minutes often does wonders for me!

I also refuse to think of myself as “sick”. This is a trick my mom taught me when I was a little girl. If you think sick you act sick, if you act well you’re telling your body to behave as if it were well and you get well faster. It may all be in the mind, but current research is showing more and more that you can PHYSICALLY change your body with the way you think about it!

Hope this helps! Best of luck to you!

[Lnlc in reply to ANNIE6449]

Annie6449 - love your mom's philosophy! One I've often used.

[Topood]

I responded to people within this thread, so I hope you’ll check those out...but I also wanted to add that lately I’ve been sleeping up to 12 hours a night....that seems to give me enough energy for the next day, but it 5 hours more than I slept when I was working! I’m so lucky to be retired....

[Lnlc]

Hi you lovely women -- thanks to everyone! I've made a list of your wonderful suggestions. Ironically, yesterday I woke up highly energized and was out the whole day (it's my birthday month so I try to celebrate as often as I can). I have a feeling, as with many of our challenging medications, this is going to be one of those wonderful and not so wonderful days kind of things and I can LIVE with that! much love and appreciation, Ellen

[PJBinMI]

I needed sleeping meds for over a year earlier in my l o n g journey with MBC. Since then, i have had trouble sleeping occasionally. Taking two benedryl tablets often helps me get to sleep when I'm having trouble. But I have had fatigue most of the time since I've had this lousy cancer. The kind of fatigue that you mention......the kind that seeps into the deepest part of my body and my mind! My daughter is a teacher and asked me to travel to England with her during her spring break a few years ago. I had to say no, which felt awful as I love England and have traveled there 3 times and would go every year if I had the energy! If anyone finds a good solution to our fatigue, I'd sure love to hear about it!