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Total fatigue!!! Help

Well ladies I've just finished my 6th carbo/taxol with avastin added in. My ca has tumbled from 2700 to 11 which obviously I am delighted with and in have been found tonnage the brca2 gene (apparently the fall in ca125 so dramatically is something to do with the brca gene being so sensitive to the chemo) or something like that!!! Asnive said. in previous posts, I think what's left of my brain it switches off or doesn't soak up info!! Anyhow, I'm feeling so low in energy, fatigued and despite wanting to get out for a little walk cannot summon up the energy to do so, its making me miserable! Is this the aftermath of the chemo and does anyone think I'll be better when just on avastin? I don't post much but I do read your posts and wish you all so much good wishes. Keep warm and keep well!!

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Hi

It's normal to feel fatigue, the effects of chemo are cumulative , don't stress yourself about it, your energy levels will improve somewhat in the coming weeks!

Wishing you well..........and improved energy!

Juliet

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Thanks for your reply Juliet, perhaps I am expecting too much too soon!! Wishing you good health also, take care joan

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Well done finishing the chemo your CA125 drop is outstanding many congratulations on that result, you must be thrilled it has worked so well.

The fatigue that comes with the chemo is so very debilitating and added on top of major surgery it’s no surprise we feel so very tired. I only had the carbo/taxol combo so can’t comment on the avastin but I still found it totally exhausting and was really surprised at how long it took me to start to feel more like me. It will get better but slowly, the biggest thing is patience and a healthy diet. Take small walks and do small tasks initially and slowly build up your strength, you will get there, I think that once we have done with the chemo bit we all expect to feel better straight away but it is a gradual evolve back to a new ‘normal’. Take it steady and try not to expect too much too soon. Big hugs and love ❤️Xx Jane

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Hi Jane, thanks for your reply, as mentioned to juiliet I'm probably expecting too much too soon, and yes our bodies have been through an assault course of sorts! Tomorrow I shall hope to have a little walk around the park followed by a nice hot chocolate, yum, something to aim for (the drink, not the walk!!lol) and yes, I shall try to put my patient pants on and wait til this passes! Wishing you good health love joan

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HI Joanne, I would agree with Juliet it is normal after chemo to feel fatique. A lot of people justvdon,t understand exactly how debilitating this is. Someone once explained it to me in the terms that it was like carrying an elephant round with you tied to your ankles. IT WILL GET BETTER OVER TIME but you WILL have to be patient with yourself and listen to your body.Thinking of you, Chris

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Ha ha Chris, I can just picture dragging then poor elephant!! Poor thing. Yes will need to be more patient and just be grateful for getting thus far. You keep well and warm on this cold day! Love joanie

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Well done to getting to the end of your chemo and a great CA125 result .

Yes the fatigue will improve now you have finished chemo although can still hit in waves on the avastin . I have 3 more to go !

Pace yourself and try and do just a little walk each day and slowly increase the distance . Had a great talk by physio when I finished chemo who suggested that just walking up and down the stairs or standing up and sitting down in a chair for a minute can help . I do notice that I feel much worse if I don’t get out for a walk with the dog .

Have you been offered any support with physio ? I found it really helped me with recovering from surgery and building up my fitness after chemo . Your gp or CNS should be able to arrange . Almost a year on I am back at the gym and to Zumba , although struggle when I first get out of bed as the avastin seems to make my joints very stiff so takes a while to get going !!!!

Take care and pace yourself. Hope you start feeling like you have more energy soon .

Love and best wishes in the avastin

Kim x 💜

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Thanks Kim for your reply, great that you are coping with your treatment, but I do understand the joint pain! Itnis a great idea to explore the physio side of things, so I'll give it another few days and put an enquiry into my CNS for this, thank you. We do have a centre at the hospital in Leeds where talks are given by various speakers but to be honest I've kept away thinking that talking about this condition could lead to negativity, however, I'm niwnthinking the opposite as this site offers positive and uplifting messages. Thanks again and wishing you every success with your treatment, love and regards joanie x

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Great CA-125 result! I've not had avastin but energy levels did start to increase for me after I'd had my 6th carbo/taxol.

I think it is important to get outside every single day, even if it's only to walk to the bottom of the garden, whatever the weather. Or the corner of the street if you don't have a garden. There's something about being outside that lifts the sprits and the effort of getting ready to go out is repaid a hundred-fold once out there.

Easier said than done, but little by little you will slowly go further and further.

All the best!

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Thanks January yes tomorrow is the day I escape and push myself even if only for a little walk, thank you and you take care too xx

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You should feel sooo much better on just Avastin. But it will take time... do a little bit every day and don’t rush. Very soon your old energy will start to flood back but I think it took me more than a year to feel ‘normal ‘ xxL

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Thanks Lyndy, it gives me hope to this k of feeling better soon, glad you doing OK too, hugs x joanie

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Wow, what a fabulous result with your CA125. You must feel so happy. As I'm not at the end of my chemo yet I can't speak personally but a friend who had chemo 5 years ago was exhausted all the time, both during and after, but then pushed herself to go out for a walk with the dog. She was found by two people, slumped against a car, head split open and unconscious. She learned a lesson the hard way and after she recovered she just waited and rested when she felt the need. Eventually her stamina returned and now she's fine. So I guess patience is the key and don't overdo it. This time of year doesn't help. Long dark nights are a bugger. Once the spring comes I bet you will be training for the marathon!! You'll have to take up a hobby that involves a lot of sitting on your behind and falling asleep. Can't think of one off hand though.

Kryssy xxx

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Ha ha kryssy, that made me laugh, sitting on my bum I mean!! I am good at it at the moment, was never like it before, got bored too easily and liked to wander out, but yes you are right, dark evenings a d cold days don't exactly entice you out. Hope your friend is much recovered now, you take care and keep warm, hugs xx Jamie

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Thanks Jamie. Yes my friend is fine now. Living with leukaemia but living. She's approaching 80 now too. Walks miles with her (new) dog every day.

I wondered if swimming would help you. My hospital has a cancer group which does all sorts of things but as it's all french I haven't joined as I find the language a struggle sometimes with chemo brain. It's bad enough every week at chemo clinic, if the person next to me insists on talking to me in rapid french instead of just letting me concentrate on my knitting - or sleeping. I just glaze over after a while. Anyways, I digress. The cancer group have a swimming club each week with gentle exercise. A bit like aerobics in water - can't think of the right name as I'm not a swimmer at all.

I've just asked hubby to think of a hobby where you could sit on your backside and fall asleep. He said, "Watch snooker on television". He watches it and ALWAYS falls asleep. Sorted. Sounds like a load of balls to me though.

Happy days..... xxxxx

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Ha ha kryssy, sounds like my hubby would also enjoy watching snooker all day, perhaps i would give that a miss though! I'm going to get in touch with the support centre at the hospital and avail myself of some of their services which in haven't done, thinking it might be negative listening to others with this disease (unless they are positive which is what I like to hear) ! With regards to swimming, I can't swim, but aqua aerobics would be good, I'll enquire with my local pool. Thanks form your helpful advice. You taken it easy!! Hugs and goodnwishes, Joanie x

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Anyone would fall asleep watching televised snooker.

I expect you’re in your taxi now on the way to chemo. If I find someone wants to talk and I’m not interested, I put on my eye mask. It has rounded eye-cups so your eyelashes )when you’ve got any) don’t hit the mask when blinking. That, plus my Bose noise cancelling earphones, best investment ever made for hospitals and I’m in my own silent dark cacoon.

Interested in the swimming / aqua aerobics. Is it a special pool? I’ve been told not to go swimming because Of danger of infection, and I miss it.

What’s with the potassium? Someone else mentioned it in relation to paw-paw. Well, it was something that began with P anyway.

Have a great day. I’ll send you a link for the eye mask if you’re interested.

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Hi Joanne,

I have suffered from fatigue all through my treatment - I’m just coming to the end of 18 Avastin. In the last few weeks I’ve been having acupuncture which seems to have helped - I have much more energy than before.

Hope you feel better soon, best wishes, Ali x

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Thanks Ali, great that yuou are nearing the end of your treatment, I hope you are in remission forever!!!! Thanks for the heads up regarding acupuncture, I shall investigate this, good luck xx joanie

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My wife was totally fatigued at the end of chemo. That was three months ago. Week by week she is getting stronger. Sam is still tired in the evening but we have been out for walks and over the last few weeks she been out for a number of lunches and catch up with friends now her strength is returning

Yours will return too very soon

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Thanks for your reply and glad to hear your wife is getting stronger. Yes I agree it is a slow progress, but as long as its progress that's positive!! Lunches and meet hips are fabulous, they make you feel more normal and gives an opportunity to talk about other things other than this crappy disease. I've managed to get out for a while today so, yay, progress!! Wishing your wife well and also look after yourself cos you are doing a teriffic job in supporting her and others xx joanie

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Hi Joan

It’s a real drag being so exhausted but it definitely will get better! Do pace yourself though and don’t expect every day to be the same. Some days will feel better than others but gradually you will have more better days than tired ones. It can take a long time and you just have to go with the flow but you are allowed!!

Your body has taken a massive chemical assault and will recover given time and rest when needed. I found it hard in the beginning to have to admit to myself and tell others that I just couldn’t do things especially having been reasonably fit but it’s all part and parcel of the road we are following and not really spoken of enough.

I wish you well and a smooth gentle recovery!

Take care, love and hugs

Jane x

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Hi Jane, yes you are right in that its hard to admit to yourself and indeed others that you are not up to things, which is a negative isn't it. I a have managed to get out for a while today so that's a plus and unlike you say will take each day as it comes. Wishing you good health x joanie

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Hi there, so please your Ca125 has come down into normal ranges, makes all the treatment worth it, well done! I haven't had the Avastin but had the same chemo regime after extensive surgery and yes have have experienced terrible fatigue. It does slowly improve, you have to learn to pace yourself and choose a couple of small things that are important for you to do that day. I used to go for a short walk each day, even if it was for only 5 mins and gradually increased the time. I'm 13 months on and much better & fitter but I still have to balance what I do. Give yourself time to recover, you have been through a lot physically and emotionally. Best wishes, Jo xx

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Thanks Jo, yes you are right in pacing yourself, problem is I'm so damn impatient but am learning to adjust!! I suppose I don't think about the toxic chemo that is pumped into our bodies and feel I should just be able to carry on doing what I have always done!! Silly me!! Its fabulous you are 13 months on, fitter and stronger, long may it continue. Wishing you good health, joanie

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Yes! Your energy level will definitely go up when on Avastin alone. I had six months of carbo and there were days when I couldn’t even get out of bed. I have been on maintenance Avastin now for just over 3 months and am feeling much better. I still tire easily, but am able to do more, I can actually go swimming every day now.

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Hi Andrea, that's a positive message that you are less tired, fabulous news, onwards and upwards!! Yes I'm going to pace myself and try to be less impatient!! Good luck and conti ued health improvements, joanie

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You see how many SO understand. I had no fatigue with chemo (Carbo Taxol, now Carbo Doxil) but with immumotherapy I tried to describe the fatigue feeling as someone put a 400 pound vest on me and said skip down the block! I could hardly lift my arms, my legs, and I am in NY where the subway is how one gets around and the walks UP the stairs out of the subway just about did me in (I crawled, people behind me got mad, I pulled on the side rails to help myself get up those massive amount of stairs.

Anyway--what I was told, and what I did TRY--was exercise daily. I literally had to tell myself to put one leg in front of the other some days but I pushed. I know it helped other things too--(like what goes on inside my body) so I was motivated to NOT let this get me down. Any time I mentioned it to my onc or team, they said as long as I can get up, as long as I am standing, I needed to try to exercise. I am a swimmer and maybe that is easier because my weight was supported a bit, but your response about a class in the pool where you can stand sounds promising. Being understanding of you, your abilities each day, your needs, etc. is also very important so if curling up and watching TV one day is what helps, there should be no guilt around that either. Wishing you the best. That is a BEAUTIFUL ca125 (I am also BRCA II and I also react to chemo as you do!) With hugs, Judy

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Thank you so much Judy for your reply, wow,subways in NY sound scary but well done you that you pushed through and exercised your body when you could. Well today started off sunny so I was determined to get out, which I did. Pottered around at my daughters house doing her a few chores and saw to her dog, just had a little walk, yay!!! So now back home, feet up for a while then going to prepare our meal, so today was better than yesterday, promising!! As my once said last week when I wondered about having my last dose of chemo he said .....I won't ask you to grin and bear it, just bear it, so to all us ladies battling, let's do this and kick its a...!! With every good wish wizzing its way to you!!!! Joanie xx

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Hi Judy and Joanie: I totally agree with put one foot in front of the other. It has been my mantra for years now, even before I was diagnosed. I would also be aware of your blood work, Hgb & platelets too low will knock you down. It's hard to walk and swim when you can't breathe. More information please and thank you.

Blessings to all Eileen

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Hi Eileen, thanks for your reply I believe my bloods are OK, I was low on potassium and had a potassium infusion, then calcium low so now on calcium tablets!! Other than that I think its OK. My blood pressure has risen so we are keeping an eye to that but that is because of svastin. Like you say, one foot at a time, patience was never my virtue!! Need to learn more how to do it!! Wishing you good health xx joanie

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Fatigue is absolutely normal at the end of chemo. You have been through a lot. And its like your brain & body want different things - brain wants to go for a walk, body says no way! Give it time, it will pass. Take care

X

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