Sooooo tired as of late. And decidedly disappointed with my stupid body and it's stupid reactions to the avastin. It's been over a year since I've been on it and I am always, always tired. Bone tired. If I engage in too much activity- and by that I mean, if I wash some dishes AND vacuum, I feel like I got run over by a truck. I took a 6 week break expecting to feel better, more energy etc. It didn't really change much.
I wish I had the old me back. The one that could work all day, come home, tidy up and bake meals, go out with friends and run marathons. The new me cannot even make her bed from day to day. My nerves and muscles are in constant pain. My chest gets to feeling like I have someone sitting on my chest.
I get to thinking, this is permanent. I know I have a chance to live and I shouldn't waste it- the medicine is keeping me alive. But I do not always feel like this is worth it. Often, I am in so much pain and have so little energy I have to consider if I am actually living or just existing.
That is all. Just sad. I may feel better tomorrow.
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Natsmb
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Sorry you are going through a rough time and I do empathize but I am very concerned by your mention of chest symptoms.
I don’t wish to alarm you but I had a heart attack out of the blue a little while ago caused by chemo.
I had only very vague, slightly uncomfortable symptoms. All things I just put down to chemo side effects. None of the big dramatic, clutching the chest moment you tend to associate with a heart attack.
The only reason I called 999 was because my chemo triage said I must. They literally saved my life.
Wow, I had no idea that could happen. Good to know. Thanks for sharing. Hope you are better now.
So sorry you hear you are suffering in this way, maybe its time to talk to your team about your symptoms and see if any relief is available. Reducing the dose might be an option. I hope you feel better soon. x
Thank you. It helps to have another person validate that I'm not just feeling sorry for myself. I'll be checking in this week with my oncologist about a change in treatment or dose. I didn't realize it was a possibility.
That's existing not living and your team would definitely want you to be living life with more quality.
I too had similar symptoms once I'd been on Avastin for a while (probably not as severe) but I always felt better if they gave me a break of one cycle. It may be time to reconsider whether to continue or as Laura says, to have a dose reduction if that's possible. I was told it wasn't possible for me.
Do get the heavy, compressed feeling in your chest checked out promptly. I had the same thing though and it turned out to be a long term lung condition probably caused by my cancer treatments. As Julia says though, it could be related to heart problems so best not to leave it.
Once I came off Avastin (after 3 years) my symptoms gradually eased. Hope you get some relief and quality of life soon. 💐😘
What did they do to take the lung condition? I've had this long tightness off and on for a while now and can't seem to get whole lot of attention to it. It's been alleviated in some by taking very high doses of aspirin.
I’m sorry you’re having such a rough time. You have to be a nuisance and keep pestering oncologists and GP.
As you are taking high doses of aspirin you should also be taking some kind of stomach antidote. I get prescribed omazaprole. Think that’s the spelling 🤔
I was admitted to hospital several times with chest infections/pneumonia and despite lots of tests, they couldn't find the cause. I then got referred to a regional specialist lung centre and they looked at my Oncology CT results and realised I had Bronchiectasis which is progressive lung fibrosis. Keep pushing for answers. It can actually be a symptom of anxiety too. X
I'll push this to get it checked out. Something's going on. I've been complaining about it to my regular doctor and the oncologist nurses but they just listened to my lungs and so everything's fine. But breathing is hard, I don't care what it sounds like in there I just know that it's hard .
Firstly so sorry your feeling so fed up 💖 I to found myself going from a very active person, to feeling all my joints in so much pain!
My doctor could see how much it was affecting my everyday life, and prescribed me Dexamethasone which are steroids. My joint pain disappeared so much I was feeling like my normal self. I have been told I need to reduce these steroids, and probably seize them all together, but it certainly gave me, me back for a few months. I was able to go into the loft and sort all sorts out 😂 it felt good, just to have a period of normal to get my life organised xx
The only side effects the drugs gave me, was a slightly red face, and sometimes slightly bloated.
So sorry to hear how bad you are feeling ,I have no experience of avastin ,I'm on carbo and taxol following surgery ,but I can totally understand how you feel, I too feel like I'm just existing not living ,having gone from very active to being grateful if I am well enough to go out for a cup of coffee ,this is so hard ,I feel for you ,I really do , I've contacted Macmillan to see if they can offer advice on how to cope better ,have you tried them ,I'm told they are a mine of information ,physical and emotional ,I hope you soon get more help with your worries and problems .xx
Thank you. I think I will check out what other support is offered for this. This feeling terrible day after day- you're right, I need to get some more help.
Be sure your Oncologist nurses weigh you and do Blood pressure tests at each and every visit. Blood samples must be taken and analysed. We know they take our blood cell count down to minimum and why we run out of puff and are more susceptible to infections. It is easy to be over dosed. I found Avastin of no effect after taxols.
Yes I see you have had heart problems-nothing to fool around about. In the bigger picture how do you know you have to stay on Avastin? Do you have tumors it’s keeping stable? Maybe you should get a second opinion. Life has to be worth living!
I was in Carbo and Taxol but was only on it for 4 and a half cycles before I was pulled off because I wasn't responding- I went from Stage 2 to Stage 4 in those 14 weeks. After trying Optivo, I was given the option of a clinical trial or getting random drugs thrown at me to see what might work. I have emphatically resisted clinical trials-especially the ones at the early stages, which were all I was eligible for. My oncologist encouraged meet to try Avastin. It's stopped tumor growth although it hasn't reduced the tumors. But as the treatment has gone on I just keep feeling worse and worse. I think what's gotten to me the most is that I took a break and didn't feel any better. I've got one more option other that this one but it has mixed success. At least it's still an option. I think I'll chat with my oncologist about it. Ugh. I just wonder if it will bring me a whole new set of side affects. But I think it's getting to the point where I may be willing to try something else.
I was on avastin for 16 months and I felt like a zombie. It’s real. Had shortness of breath, saw cardiologist and heart was ok. I’ve been off it now 6 months, still a bit short of breath at times, but most other side effects have eased.
I hope you get some answers. It’s so frustrating. Take care
Oh this gives me some hope. Thank you for telling me that. Was it a temporary treatment or were you able to get off of it because it corrected the problem? Can I get a little bit more information from you? How long did it take before you experienced the problems? What kind of breathing problems did you have? Did you have any muscle issues?
I had avastin along with carbo/taxol for frontline treatment and then avastin for an additional 11 months. It was a clinical trial. Even after the carbo taxol was out of my system, and I was just on avastin, I had fatigue, brain fog, joint pain, sporadic breathlessness, severe hypertension ( controlled with blood pressure meds) and other small things. But I have also heard of women on it for years who have almost no side effects too. About 2 months after stopping avastin my personality and ability to taste food started to return. I’m still worn out easily and have other issues, but I feel more like myself if you know what I mean. Can’t do many stairs without stopping half way to catch my breath, but at least I know I won’t faint now. Please do get heart and lung problems ruled out if you can. Hope you feel better🌸
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