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My Ovacome
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Update to confused and in pain

Thank you everyone for all of your replies and your wonderful support. I certainly saw my oncologist with plenty of questions and lots of information. We talked things through and she decided in the end that it was time for me to finish the Avastin treatment since I was experiencing so many side effects. I was relieved to be honest and feel that I will be able to enjoy my remission more when the side effects eventually wear off. She also said that they do not know how many doses of Avastin are needed to improve survival chances and that I should feel pleased that I managed 11. She explained that looking at results of other surveys, that overall percentage wise women have a 4 to 5 month improvement in life expectancy after Avastin. We discussed whether I wanted to extend my life by a chance of 4-5 extra months if I was in chronic pain.

This was not an easy decision but I feel that I was allowed to talk it over with my cancer nurse first, then with my oncologist and to jointly come to a decision where I didn't feel guilty for stopping the pain, and not like a loser for giving up.

Thanks everyone. Onwards and Upwards xx

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Hi Welshandproud,

I understand how you feel - it's very disheartening to be in pain for most of the time - it's not being able to do simple things like going for a walk can be depressing and not conducive to a good quality of life.

I'm sure you feel better having come to a decision - you can look forward to some pain free, quality time. I have just been taken off Cisplatin and it was so tough on my body that I'm delighted to be starting a less harsh ( I hope!) regime.

Best wishes and take care!

Juliet x

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Thank you so much Juliet. Yes I've been going back and fore in my mind for the last few months. The right hand was the final straw in the end. I do feel quite a sense of relief now.

I'm glad too that you are being offered something less harsh. WE all deserve some pain free time. You take care too xxx

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Hi. I'm glad you talked it over with your team and came to a decision that is for you, it defiantly is not a easy journey, and to be in chronic pain more so, I do hope do get to enjoy a very long remission,,

Take care of yourself Lorraine xx🎉

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Thank you Lorraine. very kind words. You take care of yourself too and have a good weekend xx

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Hi. Sounds like a very helpful meeting and that you made the right decision for you. Im glad you dont feel 'guilty' or like a 'loser' which you certainly are not. I hope you now are able to enjoy a long remission. Kathy xx

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Thank you so much for those kind words Kathy. Have a lovely weekend xx

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A very big decision made - quality of life is important. Now your poor body can get better and fingers crossed for a long remission. Love, Solange 😊🤞

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Thank you so much Solange xx

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I'm very pleased you will have relief, and guilt is nowhere to be found. These are decisions only we can make, and it's great you got 11 sessions in. Yes, a long remission, and pain gone. We are with you. Judy

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Thank you so much jUdy xx

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Quality of life is so important, I’m pleased you’ve been able to talk this through with both the nurse and oncologist and have come to an informed decision that is the right one for you. Nobody should have to be in pain and if it can be avoided then that should be the way forward. I hope you soon start to feel some improvement and can enjoy your remission. You are in no way a ‘loser’ your a strong lovely lady who is taking back control. Big but gentle hugs and lots of love to you lovely ❤️Xx Jane

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Thank you so much Jane for your kind words. That means a lot xx

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Hi there ...

Whilst you are in that kind of pain, it’s hard to forget for a minute you have this. Pain has massive psychological effects too.

It’s very easy to beat ourselves up so I’m glad you were able to think it all through logically.

Xxx

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Thank you Tina. You are so right xx

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So glad you have been able to come to a decision. Wishing you a long and pain free remission.

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Thank you Neona xx

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Hi Welsh, I'm glad you were able to have a good discussion with your Dr. and come to and informed decision. Through my experience, I feel the med profession downplays the side effects of Avastin. I once was told "oh it's only Avastin, we treat it like candy". Really?? I don't want to down play the positive effects it has for some but I've had many of the symptoms you describe as well as high BP and now seeing a nephrologist. It can also take a while to see improvement once you are off it.

As I said, it's a good thing for many people but we are all different.

Hugs and best wishes xx

D

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Thank you Dee. Yes I agree. I was not aware of quite how bad the side effects could be. I was told how people went back to work and took half a day off for the infusion and then lived their lives normally. I wish I was one of those people but sadly no. I'm sorry you're having to see a nephrologist. Sending you hugs too xxx

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Hi, Welsh and Proud....am glad you are feeling proud and are going to enjoy the rest of your life however long or short... you should not have to suffer to the extent you were. I felt broadly the same I think, when taking myself off Niraparib...a decision I took whilst on holiday that was later supported by the Marsden oncologist informed by a scan... I could not cope with feeling so ill.

Obviously, all these things work for some people and it is marvellous when they do...I so admire the oncologists who try so hard to do the best for us...sometimes winning sometimes losing. I also admire the long-term survivors and those who go into spontaneous remission. But in the end I think, we are the ones who know what we can and can't cope with and sometimes there are alternative treatments available and sometimes there aren't. Whatever we do, I hope we can inform the research of the future.

I do hope you have a long remission and are able to enjoy Christmas and well beyond...thank you so much for sharing.

Much love and many thoughts, Chris xxx

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Hi Welsh,

Fantastic that you have made an informed decision and that you should have a pain free life - it’s good to hear that we are able to make choices about our treatment. I’ve got to my 16th Avastin and am feeling more and more uncomfortable, but think I will make it to the end. I too have had the conversation about how long it could extend my life and the value of quality of life over treatment.

I hope the side effects wear off really quickly and that you can get back to some semblance of normal - whatever that is!

I would challenge anyone who dared to call us losers to have ago at it themselves - I suppose we have to have high expectations of ourselves to help us survive as long as possible. It’s not a question of giving up, it’s a matter of choosing how we manage and survive this.

Well done for having the strength to make a very difficult decision.

Best wishes, Ali x

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You made a well-informed decision taking into account everything you and your medical team know. I can really tell the difference from being treatment free and under treatment, given that I've only just started my weekly taxol, and my side effects are not as bad as yours, not so far anyway.

It's important to live to live.

Onwards and upwards as you say!

Helen

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I am glad you made a decision which was right for you after serious consideration and advice. I hope the side effects will start to wear off and that you can enjoy life once more

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Good morning. I probably know what you are feeling. I have also had to make this decision and it sucks. Still in a state of numbness. Not sure what to feel. Xx

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Hi

I agree with all the comments above. Only you can decide what's best for you.

It would be a shame for anyone to suggest that stopping taking some treatment is giving up or losing. I really don't see it that way. Nothing you have described sounds to me like giving up. In fact the opposite. You have decided to aim to get the best you can out of each day. Sounds more like someone who is a winner to me.

For some people the treatment is the right option for them. For some people it is not. We're all different.

People will ask you about it though and look a bit perplexed. I'm not having treatment (I've posted before about why when others in my position are) and I do get lots of questions about it. But I feel like I have a good quality of life and I havent ruled out treatment at some point.

I've had an untreatable chronic pain condition for 12 years (unconnected to cancer). It is wearing. Yet I get more reaction about my cancer diagnosis than my pain condition. It can be difficult for people to understand it. Even a relatively minor pain can become consuming if it's constant. So more severe pain constantly is just.....well, much swearing follows. Similarly for other symptoms that may not be painful but impact on daily life. It is difficult.

Hope the side effects start to subside soon.

X

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Hi Welsh and Proud. I had to give up,on the Avastin after about 5 doses because my CA125 kept going up and I thought it was pointless to continue with it. It felt like losing a tool at the time but you know I don’t think it made any differ no either way. We aren’t all able to respond to all of the drugs we are given and it’s better to look at how your day goes rather than regretting what was causing you pain.

Take care, xxx Netti

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Thank you Netti. I'm sorry Avastin wasn't right for you either. I agree, we can't all respond to every drug. I'm just relieved that the decision making bit is over. You take care too xx

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I've absolutely no staying power, for each dose I was waiting for someone to say, you can stop now. I enjoyed pain free time on the steroids but don't think I could do it all again, so totally understand where you are coming from, it is a tough call but it has to improve quality of life.

Praying for a long remission

LA xx

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Thank you so much. That means a lot. It was much easier for me to accept the oncologist's advice to stop than to have to make up my own mind. It was quite a relief . Sending you a big hug xxx

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Hope you have a long remission 😘 what do they offer next! If needed? More chemo surgery! Just wondered as I’m in the same boat currently still on avastin!

Has your ca125 in proved? Mine rising slowly! Lots of muscle &joint pain & more😬 why did they stop your avastin? Sorry so many ? As we are all looking for more knowledge etc I’m in Kent ! 😘😘

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