Fatigue follow-up!: A lot of us have... - SHARE Metastatic ...

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Fatigue follow-up!

42 Replies

A lot of us have fatigue issues, even while being on the lower dose of 100mg. Me too!

Last week I emailed my oncologist, requesting she add a vitamin D test to my monthly bloodwork. And sure enough it is very low!

I saw her today and I am increasing my vitamin D3 supplement.

Maybe worth checking in to.❤️

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42 Replies
Barbteeth profile image
Barbteeth

Yes we just accept feeling rubbish when it can be helped sometimes

I’m having a tough time at the moment..just started week 3 of the antidepressant citalopram and feel terrible..crying a lot not eating much and lying about with no energy or interest in anything ..apparently this should lessen so I’m battling on

All the best

Barb xx

in reply to Barbteeth

Oh Barb, I'm so sorry you feel this way. You're always so supportive of everyone, no matter how you feel yourself. I so hope that your new med will kick in soon. Try to eat though because that's very important. When I'm so low I put on water and throw in ant veggies I have in the fridge plus lentils. Your body needs some energy.

Sending you virtual hugs and energy. ❤️

Barbteeth profile image
Barbteeth in reply to

Thank you so much for kind words

I’ve had a horrible day....in a lot of pain but was determined to ride out with my daughter..took strong painkillers but was struggling..I ended up crying on the way back..felt so awful I just left my horse when I got back and my daughter fed him and sorted his rugs etc..felt fed up as I think I spoilt her ride..she said she understands but I can’t be much fun to be with and I hate it..not like me at all

I think the pain is worse due to the depression..and vice versa

Sorry to be a moaning Minnie

Barb xx

Have-faith profile image
Have-faith in reply to Barbteeth

Hi Barb. Personally I do believe if we are in a funky head space and feel down we hurt more all over. I believe mind and body are connected. Try not to feel worse thinking about how bad you feel. I am sure your daughter understands more than you think. Sounds like you need a good rest, a big cozy chair and hot mug of something comforting. I hope your spirits brighten up very quickly, or maybe they already have? Faith

Barbteeth profile image
Barbteeth in reply to Have-faith

Hi Faith

I’m just having a boring day reading..weather grey and dismal so not encouraged to venture out

I’m having an acupuncture session Tuesday so that should help..had first one last week and she said not to expect much as it takes several sessions for an effect..she seemed quite sure of herself so hope she’s right

Barb xx

Have-faith profile image
Have-faith in reply to Barbteeth

If you are having a boring day and you do like reading, go to debbiejoffeellis.com. Read some of her articles. Non cancer related. She talks about "undisturbing" ourselves with how we think. She is a very positive psychologist I just heard speak. Her energy lit up a room. Let me know what you think. I hope some of her energy runs off on you. You deserve to be happy. Faith.

Toomanyquestions profile image
Toomanyquestions in reply to Have-faith

Hi faith, your link doesn’t work, I really need some positivity. How long have you been coping with this? Did you struggle in the beginning? X

Have-faith profile image
Have-faith in reply to Toomanyquestions

Hi there. I see that I didn't put the three w's. debbiejoffeellis.com

If this doesn't work google Debbie Joffe Ellis.

I am sorry I am seeing this so many hours later.

I was dx in October 2017 which makes it a year and a half now. Did I struggle with this? Absolutely. I don't know who wouldn't struggle with this dx. It is crazy. One of the ladies on this site says when someone asks her what stage she is at she says the "WTF" stage. When I read this I thought this is so true. Really! Wtf! How is it possible that they say there is no cure for this? This is really hard to get our heads around! Of course you will feel down over this. And then we are on meds that make us feel funky and then we have the hormones to deal with so your feelings are normal. I was shocked when I was DX. I am 53 years old. I have always been a bundle of energy and healthy. No issues what's so ever. I had my yearly mammograms. Four years ago I had core biopsies done at the request of a radiologist. They were painful. They took a lot of tissue out for testing. Everything came back clear. I felt relieved. I feel that my gynecologist dropped the ball. She didn't suggest I see a specialist or have 6 month checkups moving forward. Clearly the radiologists were looking for something. I had an oncologist say that if they had gone a little more to the left, or to the right they may have found one cancer cell four years ago which could have meant catching it before it spread. Well, instead I was dx out the gate running with mbc. I have mets on my bones, a spot or to on my liver and the tumor which has shrunk a lot in my boob. It has shrunk so much we don't feel it. The bone mets had disappeared within 8 months or so of treatment. Letrozole and Ibrance and a monthly shot of zolodex which shuts your ovaries down was my regime. Anyway, I had my ovaries removed in August 2018. This way I didn't need to continue the zolodex shot each month. Well two months ago I had to change meds because there was some progression noted. I am off letrozole and on ibrance and faslodex now. I was disappointed and a bit surprised that the letrozol had stopped working within about a year of being on it. I would have liked to have it continue working longer, but I am hopeful that the new med I am on is more effective then even letrozole was. Time will tell. We dont know what the future will hold for anyone. We do know that no one lives forever. With a cancer diagnosis we are confronted with thinking about our mortality.

This is dreary so I try to refocus my thinking if I start going down that path. I read a lot of positive stuff. I have watched a lot of documentaries on Netflix and Amazon prime about health, our bodies, the role nutrition plays in keeping us healthy. I strongly suggest you watch HEAL which is on amazon or look on you tube and see if you can catch a clip of it. Very positive and motivating. Making changes to your diet or adding exercise or meditation are all noted as being beneficial for us

with or without cancer and will make you feel a bit more in control. I feel very good considering my dx. My biggest gripe is I feel tired at times and sometimes maybe a little achey. I remind myself this is probably partially related to not being a teenager anymore, not just the cancer or meds. I really try to focus on how I feel in the moment. I can't change the past and I can't predict the future. I do have hope that a new drug will be discovered that can banish this disease. An oncologist at Sloane Kettering to a friend of mine that scientists are getting closer in their search to find a cure. In the meantime, we need to educate ourselves, keep ourselves strong, nurture ourselves, fuel your good cells with healthy foods and move, walk, don't sit around unless you are bedridden. All this will help you feel better. Dont be hard on yourself for feeling blah. This diagnosis is a hard one to digest. Really hard, but the things you can control to make yourself feel better, try to focus on them and do them.

Do try to watch HEAL.

Faith

in reply to Barbteeth

Hi Barb,

I hope you start to feel better soon. If the antidepressants don't work I would go back to your GP and see if you can try something else. All the best with your next acupuncture session. Hopefully you will start to see the benefits soon.

Sophie x

Barbteeth profile image
Barbteeth in reply to

Thanks

Barb XX

mariootsi profile image
mariootsi in reply to Barbteeth

Barb sending positive energy for you to feel better. Take it easy and get some rest.

Barbteeth profile image
Barbteeth in reply to mariootsi

Thank you

Barb xx

in reply to Barbteeth

Barb - not all antidepressants are equal. If you don’t get relief soon, your doctor can try another one. Celexa finally worked for me.

Barbteeth profile image
Barbteeth in reply to

How long did it take for you to feel the good effects ?..I think the depression is making my pain worse

Barb xx

in reply to Barbteeth

The first anti depressant did not help. After 3-4 weeks, which is the usual time frame, my doctor switched me to celexa. Everyone responds differently to different meds. For example I can’t take Ativan for anxiety because it has the opposite effect - makes me more jittery. Keep trying until you find one that works for you. If you can find CBD oil try that too.

Barbteeth profile image
Barbteeth in reply to

I just bought some CBD oil..be nice if it helps

Barb xx

Barbteeth profile image
Barbteeth in reply to

Well I’ve started week 3 so maybe I’ll see a difference soon

Barb xx

Toomanyquestions profile image
Toomanyquestions in reply to Barbteeth

Are you on 10mg? I just started yesterday. Worried about the first few weeks making me worse x

Barbteeth profile image
Barbteeth in reply to Toomanyquestions

Yes 10 mg..felt hideous in the first week and was tempted to stop but I know someone who takes them and he told me to stick it out as I will start to feel better ...still waiting!!

Toomanyquestions profile image
Toomanyquestions in reply to Barbteeth

oh no! Sorry to hear that. I’ve been stuck in bed for 2 days with no energy at all and feeling despair. Hence the antidepressants. Day 11 today of Ibrance. First full cycle. Does that fatigue improve? X

Barbteeth profile image
Barbteeth in reply to Toomanyquestions

It’s not a nice feeling

I dragged myself up this morning..hubby wanted to go out for lunch but as I have no appetite it’s a waste of money

I’m just reading..thank goodness I enjoy that..can read all day!!

Hope you perk up in a few days..be kind to yourself

Barb XX

Toomanyquestions profile image
Toomanyquestions in reply to Barbteeth

That’s a good sign of not being depressed though - being able to do something you enjoy X

Have-faith profile image
Have-faith in reply to Toomanyquestions

Yes. For many their bodies adjust to the meds and it gets easier. Make sure you are drinking a lot of water. This helps with fatigue.

Toomanyquestions profile image
Toomanyquestions in reply to Barbteeth

Did you feel bad straight away? I’ve had a shocking afternoon. I’ve only taken one so far. Maybe I shouldn’t risk it? X

Barbteeth profile image
Barbteeth in reply to Toomanyquestions

Yes felt rubbish after 1-3 first days..nauseous and sort of ‘out of it’

Just feel tired now and hoping that the side effects lesson soon

Keep taking them though

Barb XX

Toomanyquestions profile image
Toomanyquestions in reply to Barbteeth

Okay well maybe that explains today, I can’t believe x1 could affect me this badly but maybe it has?

Barbteeth profile image
Barbteeth in reply to Toomanyquestions

Same here

One little tablet made me feel so rubbish

Barb xx

Toomanyquestions profile image
Toomanyquestions in reply to Barbteeth

OMG!!!!! I thought I’d completely lost the plot. So glad I asked you. I’m a wreck. Did it get worse? X

Toomanyquestions profile image
Toomanyquestions in reply to Toomanyquestions

PS You can be honest

Toomanyquestions profile image
Toomanyquestions in reply to Barbteeth

Sorry 3 replies! I took another one earlier before I figured this out. There is no way I can be around my kids like this. I’m not going to take them. Will see if there’s another one x

Barbteeth profile image
Barbteeth in reply to Toomanyquestions

I felt worse the second day..weak and nauseous..stupidly got on my horse and felt awful..came back after 10 mins ...have ridden ok since that episode but did leave it a few days

I think you should persevere..these effects are normal

Otherwise how will you ever find out they’re going to help?

Just my opinion

Barb xx

Sister3nkc profile image
Sister3nkc

Yes, my Vitamin D has been very low also. Have been taking oral supplements which help. I'm ready for spring/summer where we can soak up some natural Vitamin D!!!

The-artist profile image
The-artist

How many mg of D3 are you going to take?

in reply to The-artist

I took 2,500 iu's and will take 10,000 iu's for a while, and then go down to daily 5,000. My oncologist agreed to this.

Have-faith profile image
Have-faith

I read there is a connection between low vitamin D and cancer. My oncologist did not check my D. Shr said a GP would do this. So I scheduled the test and sure enough my D is at the lower end of the spectrum. I now take 10,000 units a day.

My onc is not really integrative. I wish she were but her approach is more traditional. I have incorporated healthy changes on my own. Faith

Juliandrea profile image
Juliandrea

I am also looking into increasing my vitamin d3 . How much are you taking now? Are you taking b12 as well? If so how much. How is the fatigue now?

in reply to Juliandrea

Hi Julieandrea, I started taking 10,000 IU of D3 and am also taking B12. I don't eat meat, so I have been taking B12 for a while. I do think it is helping. I feel more energetic. I hope it will improve even more.

Juliandrea profile image
Juliandrea in reply to

That is great to hear SpiffyCJ. I hope it continues to get better. How much b12 do you take?

in reply to Juliandrea

Thank you!

I take about 1,000mcg B12 a day. I take 5 drops.❤️

capemaggie profile image
capemaggie

Yes, I’m having bouts of fatigue where my legs and arms feel very weak and weightless, and I have to sit or lie down. I’m starting my 4th cycle of ibrance and was hoping when my oncologist changed the dose from 125 to 100, the fatigue would lessen, but not so. I play tennis twice a week and fortunately the fatigue hasn’t stopped me from my only exercise. I admire all of you with children and jobs. I’ll be 82 this month and haven’t had a scan since I started taking ibrance and faslodex. I think my onc is waiting until April. My heart goes out to you all and how you deal with this horrible sucky cancer. Love to you warriors 💕.

Margie

in reply to capemaggie

Wow Margie! It's great that you play tennis twice a week. That's pretty intensive.

Praying and hoping for great scan results in April🙏

capemaggie profile image
capemaggie

Thanks, Spiffy. Best to you.

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