DREADFUL FATIGUE : Hello all. I hope you're all... - My Ovacome

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DREADFUL FATIGUE

TudorJayne1509 profile image
22 Replies

Hello all. I hope you're all doing as well as can be expected. I am suffering terribly with chemotherapy fatigue, I'm on carbo and Caelyx this time for recurrent OC.

I'm struggling to get out of bed, missing appointments and seeing friends which I need. I dread becoming bed bound again. This fatigue is so debilitating. I spoke with my CNS, there's no meds or anything for fatigue. Apart from exercise, what else can I do? Any good advice welcome. All the best. Xx

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TudorJayne1509 profile image
TudorJayne1509
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22 Replies
Phix1 profile image
Phix1

Hi I am also fighting fatigue, Simply take the pressure off yourself darling, Eat as much fresh food as yu can manage, I take Menopace daily to suppliment, Also saw trio natural ingredients ,when combined, will Boost Yur Immune System, Anti Inflammatory, Anti Fungal, & Anti Bacterial. In a small bowl, Not Plastic ! Half cup Set Organic Honey, Sainsbury's is like liquid fudge btw 😋 Yum, 1 from Tumeric, 2 Drops Lemongrass Essential Oil, He Sure to Count only 2, I use a tspn 1st, in case it drops too fast ! Stir well, Keep refrigerated. I Hope this Nectar helps Yu, It's Certainly works for me, Drink Plenty of Water, Important to help Yur body, Kidneys, flush Toxins. It sounds like Yu R Struggling with This. Eat Pasta, Potatoes, Rice, Carbs for Energy, Proteins & Natural fats, Butter, Cheese, Full fat milk etc, Gud Luck darling, Hopefully these will give yu a Sense of Doing anything Positive, & Perk up Yur Body's Natrual Defences. If I lived closer, Wud be able to give Spiritual Holistic Healing. Seek out a Recommended Therapist. Unblock Chakras, Free Energy lines, lymphatic Drainage, Tai Chi, Gentle Stretching, Ballet poses, Pilates & Yoga. At Yur Pace, Rest Essential, Fluids ++++. Jo Williams ITEC Dip.

Phix1 profile image
Phix1

That shud read 1 tspn Tumeric , Not from !!

Mlowery profile image
Mlowery

Hi I was on this regime and I really struggled towards the end. I felt I was walking about in a deep sea diving suit. I had no energy and felt my heart was coming out of my chest. I had severe anemia and was given a blood transfusion. I was like a new woman. Hope you feel better soon .

Flamingobeef18 profile image
Flamingobeef18

Hi

I was on Caelyx alone and it knocked me sideways with fatigue.

Do mention it to your Oncologist. Severe fatigue is a recognised problem with Caelyx. By reducing my dose by a small percentage my fatigue returned to a manageable level.

I understand this is a common adjustment which can be made without much impact on the effectiveness of the chemo.

Best wishes

Juliax

PS just a thought check which anti nausea meds you are on if any. Some can make you very very drowsy.

TudorPurr68 profile image
TudorPurr68 in reply to Flamingobeef18

Hello. Yes I know about anti emetics and drowsiness, I was a senior nurse. Thank you, i will discuss it with my CNS. Fatigue is dreadful and its debilitated me

Flamingobeef18 profile image
Flamingobeef18 in reply to TudorPurr68

Sorry did not mean to sound patronising you obviously know much more about these things than me.

Best wishes anyway

Juliax

Lindaura profile image
Lindaura

I was on Carbo/Caelyx for my first recurrence and I was really lucky because it did not effect my bone marrow as much as it did others.

However, I did give in to the extreme fatigue for the first 7 to ten days after infusion.

I just laid in bed and worked from my bed desk, had meals brought to me by my loving family.

Then suddenly, I felt better and could spend the next 2 or 3 weeks almost normally (75%), and could drive and cook and take walks again.

Next infusion, I would be back in bed. For some reason, that Steroid high did not last past the first day, so I stayed low for at least 7 days.

All I can add, by way of advice, is to discuss this with your Oncologist. Perhaps they do need to lower the dosage a smidge.

And, secondly, to give in to rest during this treatment.

This combo was very effective for me, which means it was toxic for the cancer, so probably toxic for us human ladies.

Be strong.

Keep up the fight!

Laura

SuziTench1 profile image
SuziTench1 in reply to Lindaura

Same for me .. rested one week .. did loads 2/3rd week .. and the cycle was that . Im just finishing carbo /gem . 3rd reaccurance.. then Niraparib.. my PMT has kept me going .. as sometimes depression can sneak up and make you feel worse .. do what you can when you can and enjoy all good things . Wish all the best .you can fight it . Xx

Perthgirl profile image
Perthgirl

I have not been on your combination of drugs but found that acupuncture helped me with fatigue and many other side effects. 🌹

Pishi123 profile image
Pishi123

I used to have the milky energy drinks sometimes twice a day. They helped along with dates, chia seeds in real fruit juice you can make yourself. I used to suffer terribly with fatigue and these drinks were the only thing I felt like having. All the best to you and keep us posted. There energy drinks can be prescribed from the GP.

Supergran38 profile image
Supergran38

Morning, I was also on this combination. After the second cycle I felt as though I couldn’t cope with the fatigue.

I contacted my consultant to tell her I couldn’t function properly. She agreed to reduce the strength by 25%.

It did help and I managed to complete the last four cycles.

Worth asking your consultant. X

Check out this Booklet...may be of Interest.

Eat Well During Cancer - World Cancer Research Fund

wcrf-uk.org › sites › default › files › Eat-well-during-cancer

This booklet was written with the support of dietitians from the British Dietetic Association. (BDA)'s Oncology Specialist Group to ensure the information is based ..

I am also on Carbo/Caelyx and do suffer fatigue but only for the first week, then an afternoon nap usually resolves it. If I were you I would ask your CNS if the results of your blood tests especially haemoglobin were normal as if very low can cause extreme fatigue as you describe. If you are considering dietary supplements please ask your oncologist first as many can react with chemotherapy, I have recently read that Turmeric is not recommended during chemotherapy. Good luck

Maxjor profile image
Maxjor

I just wanted to say I am sorry for the dreadful fatigue. I have had several (many?) lines of treatment and I can tell you I know the ones that knocked me on my arse. Stairs were (and can still be) particularly difficult. You have gotten great advice--I just want to make sure you do focus on drinking plenty of water/liquid and also if you can just try to push a little with a few extra steps a day--I never felt better the day I pushed but the day after was a bit better. I also just do as others here have said and if I need to rest, gosh darn it, I rest! The world will wait. Wishing you luck with this and know you can do it! oxoxox Judy

TudorPurr68 profile image
TudorPurr68 in reply to Maxjor

Some of the advice I've 'gotten' has been great, some I know as I was a senior nurse until I had to medically retire. Thanks for yours x Jayne

Twinie2 profile image
Twinie2

Ask for Ritalin....it really helps

TudorPurr68 profile image
TudorPurr68 in reply to Twinie2

What is Ritalin?

Cynthia18 profile image
Cynthia18

Chemo knocks us down hard and we need our rest for the next round.i slept A LOT and weak. I was same way forgetting things appts ect.

One day at a time

Coconut2020 profile image
Coconut2020

I had that fatigue all the time during treatment and after, finished treatment in 2015, it was actually getting worse and in 2018 I had a full blood count done with my new Gp , I had a thyroid problem and am now attending an endocrinologist, on carbimozol, being reduced now, much better. Might be no harm to check thyroid checked out !

TudorPurr68 profile image
TudorPurr68 in reply to Coconut2020

Thanks 9974. All checked, thyroid normal. x Jayne

yo207 profile image
yo207

Hi Jayne, I’m sorry that you are feeling so fatigued. I used to be in bed for 5-7 days after each treatment. On my third recurrence one of my nurses suggested more steroids after chemo. I hated taking the steroids to begin with but it worked. I was able to go to work everyday after chemo and I was living! I gained 40 pounds by the time my treatment ended but I was able to lose the weight after treatment was done. I would not trade it for the world. I took steroids from the night before treatment on Monday all the way to Friday. I don’t know if it will help you but it’s worth a try. Good luck! Hugs from Queens, New York!💙

TudorPurr68 profile image
TudorPurr68 in reply to yo207

Thank you from Enfield, North London x Jayne

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