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AVASTIN length of treatment

Hello,

I’m wondering how long any of you have managed to tolerate Avastin. I’ve been having it since March first with second line then on it’s own and I’m really struggling.

So feeling really torn between putting up with it and giving up the two days I work (normality) or trying an 80% dose with no guarantee it will then work or stopping it all together.

My son is 13 so I feel very much like I need to give it my all even if that means I do have to put up with side effects. I also realise I’m very lucky to be on it.

I think I’m just looking for a bit of hope that it might get better over time.😬

The symptoms I have are fatigue, pain in all joints, even ones I didn’t know I had and feeling a bit sick most of the time.

Any info would be greatly appreciated.

Sending love to you all for 2019, here’s hoping it’s a good one for us all.

Lisa x

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Lias, I strongly urge you to seek out and read the actual study data on Avastin or any treatment you are prescribed/offered. I do not believe Avastin adds longevity to a patient's life. It's side effects appear to be harming the quality of your every day living. "Giving it your all" does not mean taking every drug offered. Please do the research so that you can make an informed decision with which you are comfortable.

I completed second line chemo at end of August 2018. I was offered Niraparib aka Zejula. I am not BRCA+ so after reading studies from BioMed publications I am convinced that Niraparib would not lengthen my life but simply be chemo in pill form with side effects affecting my quality of life and could perhaps even harm me. Since I'm already fighting a most likely "incurable disease" it seemed I would actually be making myself suffer for no benefit. I did not take Zejula and I'm 4 months NED, which I hope continues. Now, this is my conclusion that works for me. You must get enough information to make a confident decision for yourself. Much love and concern for you. :)

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Thank you for replying, i did read everything I could before starting this so know it’s a long shot.

I think if it were only me to consider I would stop but I feel compelled to take every opportunity to extend my life even if it’s only for the reported 4-6months if that means I’m here for my son. If he was older maybe I’d feel differently but every month I get is one closer to him being an adult.

I keep weighing up the odds but I’m not a betting person.

All of the info you ladies are giving me is really helping, so thank you. X

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Lias, I absolutely understand with all my heart the need to stay here for one's child. That is paramount. There is also the possibility that you will NOT perish from this. We don't talk about that much on this forum. Even though the survival rate for 3C is about 12% that still means that women DO SURVIVE! I hope I have not upset anyone with this statistic, but survival is still a possibility, especially with immunotherapy being tested. Love to you my dear. :)

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I probably like you see stats as something to beat rather than a death sentence.

I absolutely get what you mean and your reply is exactly what I need, I want different perspectives no matter how uncomfortable they may feel. I know I work through problems while talking about them the struggle with this situation is no one in my family can face talking about it! I’m sure many of us on here have the same.

Thank you for your reply, I definitely don’t want to be taken out by the treatment and it has happened to someone I know. X

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Hi Lisa. My experience with Avastin has been a very positive one. I had it for 6 months initially along with Carbo/Caelyx for 2nd line 3C. Caelyx was the difficult one for me. But I tolerated it and went into remission. Avastin has continued 3-weekly as maintenance for around 4 years.

The only side effects I get are raised blood pressure (need to take pills) and a runny nose with sneezing (mostly in the morning and when I eat). Those are common side-effects.

I belong to an OC Support group and I know women who haven't tolerated it (headaches) and I know ones who, like me, have. I get sore feet but have no idea if that's got anything to do with Avastin; I'm 72 and if you put the age together with the length of time I've been having the Avastin infusion, then I can't be sure about that.

I believe the side-effects listed in the internet are extensive, to cover themselves perhaps.

Sometimes on the day of the infusion, I feel a little tired and on rare occasions a margin queasy, but nothing more.

Good luck with your decision, it's certainly a god-send for me. My first remission was for 18 months. Best wishes. Pauline.

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Wow Pauline, that’s such positive news. I’ve also been told I will be on it until it stops working so that sounds like a huge opportunity aches and all. Thanks for taking the time to post, very much appreciated.

Xxx

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hi hun I had 23 infusions kept be ned for 1yr now looking at cisplatin and plasma jet surgery,runny nose and bp raised joint pains but onwards and up, dont listen to stastistics be your own advocate,lots more available out there still,good luck xxx

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Thank you! Xxx

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Hi there, exactly the same for me too with exactly same side effects as Pauline. After Carbo, Taxol and Avastin finished in July 2017 I have continued with Avastin on it's own every 3 weeks since. So far so good.

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Great news xxx

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Hi. I took Avastin initially with Carbo/Taxol, then on its own, for the full eighteen sessions. I experienced the runny, bloody nose and a lot of joint pains, but never thought about stopping. I found Epsom salts baths gave me some relief before bed, also gentle walking rather than sitting around. I started treatment in early 2016, and am currently NED. Personally I am so grateful to have been offered Avastin.

Jenny

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Thanks Jenny, I’m going to try Epsom salts, I do find baths help but struggle a bit to get out! 😂

Thanks for replying, very much appreciated. X

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Hi Lias

I managed 11 of the 18 sessions of avastin. I gave up when the pain and arthralgia became unbearable. My right hand became so sore that I couldn't peel an onion or turn over a page without pain. My neck, knees and feet were also very painful. I gave up reluctantly after discussing it with my oncologist. My quality of life was being badly affected. I too felt guilty because I knew that some ladies were desperate to get access to this drug and I feared stopping would reduce my life expectancy . That was in October 2017. I had been told that it could come back quickly when I stopped but this wasn't the case for me luckily

Talk to your team and then make the best decision for yourself. Sending you lots of love xxxx

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That sounds very similar to me, I have the fear to that I will recur straight away. How long after you stopped did the pain subside? X

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It was a bit slower than I had hoped and I still have some pain but so much less . I would say a couple of months before I noticed the change in symptoms and now so much better. Good luck with whatever you decide xxxx

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Wishing you all the very best too! Xxx

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Hi Lias I had avastin back in 2009 as part of the ICON 7 trial, due for 18 sessions, but stopped after 10 due to neurological problems, which may or may not have been down to the drug. ( at the time they had no other reports of them). I was very grateful to get it, and I firmly believe that it has helped me get to my 10 year survival anniversary. My onc said that there was little support for giving more than 6 doses at the time- but may have changed since.

Good luck

Sue

X

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Thanks Sue, 10 years, blinking amazing! That’s just made my day. I think I’m feeling a little low at the moment so hearing this has really lifted my spirits. X

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Hi Lisa

So sorry to hear you’re having these awful side effects with the avastin. Our bodies and cancers are all so individual and we respond and tolerant the drugs differently. So be kind to yourself, can imagine how difficult the decision is as to what to do when you are having constant discomfort versus trying to be there and having fun with your teenager. My daughter was older but just about to go off to uni when I was diagnosed and had my 8 hour surgery in her first term. She wanted to drop out and delay the course. I remember beating myself up and feeling so guilty about putting her through this, as if I had chosen this path ! Felt so unwell but dragged myself up to Bristol to help her settle in.

As others have said, discuss with your team and do what’s right for your body. Our kids whatever age are more resilient than we think. 💜

I was lucky as diagnosed stage 4 I got 18 cycles of avastin after my chemo and tolerated it well. Suffered aches in my joints especially my knee which was an old injury, migraines ( but had these before) terrible throat congestion at night. Had some physio and walking really helped with the stiffness. Have been Ned since my surgery Nov 2016 and almost a year this month since stopping my maintenance avastin. 🤞Scan due end of the month. I was convinced when I stopped, my cancer would return.

Good luck with your decision but remember to be Kind to yourself whatever you decide.

Love and best wishes Kim💜x

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Thank you so much for taking the time to reply Kim, I think that’s the first time i’ve seen stage 4 and lucky in the same sentence, it’s crazy how we manage to find the positive in everything!

It’s so wonderful that you have been in remission for so long, fantastic and reassuring to know you felt the same on stopping.

I hope your daughter is now enjoying her course, it must have been so tough for her and you. Mummy guilt is the worst.

You are so right re the resilience and I needed reminding of that.

Wishing you all the best,

Lisa x

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Hi Lisa

I only managed three infusions before the side effects got too much. I couldn't cope with the joint pain (I had already suffered badly while on chemo). I decided that the possible extension to my survival wasn't worth the effect it was having on my quality of life.

Lou xxxx

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It’s so odd isn’t it how we all react so differently to these drugs. My oncologist says 1 in 5 experience bad side effects.

Wishing you well,

Lisa

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Hi Lisa ,

I had carb , taxol , and avastin when I had my first lot of chemo that was in June 2015

After the 6 session I was going to have 18 avastin as maintenance but I only managed 4 as I had a really bad neck and shoulder.I am on my 4th lot of chemo

And I am with a different Dr and she has put me on carb, gem and avastin and avastin for maintenance when I am finished just had my 4th infusion she wasn’t convinced the first time it was avastin coursing my problem... but after the first infusion my neck started to play me up so she put me on paracetamol and ibuprofen and it cleared it up and I have not had the problem since just hope it continues but if it does come back I will start the paracetamol and ibuprofen again ... worth checking with you team to see if this will help you .

Pauline x

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Hi Pauline,

I’ve just started on ibruprophen and paracetamol this week so we will see how I get on. You have also answered another question, if I stop it and end up on chemo again can I get Avastin for a second time.

I’ll double check with my oncologist too.

I’m pleased you are out of pain, keep well and thanks for replying.

Lisa x

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Did your oncology team approve the ibuprofen ? I was told to avoid it as can thin the blood and cause stomach problems.

Kim x

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Yes my oncologist told me to do paracetamol and ibruprophen alternately. The doctor had given my codeine which he didn’t want me to take.

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Hope this works for you , Dr put me on acid reflux tablets because I was getting indigestion and to help protect my stomach they are lansoprazole 30mg Gastro- resistant capsules which I am still taking because of the chemo

Pauline x

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I have been on doxil 1x month and avastin 2xmonth . I get fatigued also but my CT scans have been good I see my Dr in a few weeks and if they are still good We talked about keeping me on avastin. For maintence I'm not sure if it still will be 2x or dropped down to 1x month as long as it's doing its job ill stick with it. I'm working thru it all and my job is really good at letting me take off when I need too I had primary perintoneal cancer in 2015 then a recurrence 16 months later was back on carboplantin and taxol for a few spots on my liver... now on Doxil and avastin things seem to be either gone or smaller so I'm happy with that I am hoping and praying it works as a maintence. They also do a 6 month echocardiagrom to make sure heart muscle is good if you still have achiness really bad have Dr check you magnesium now take magnesium everyday and that helped with the achiness its still there but not as bad as it used to be. Good luck and prayers will be sent your way!

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Great to hear you are doing well on it! Thanks for the advice re magnesium. Thank you for the prayers and good wishes, same back at you!

Lisa x

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I am thankful avastin I had 18 months worth which kept my cancer from growing but unfortunately that when the funded stopped and it is only certain people that are eligible I have other treatment and still had side effects but it has kept cancer at bay have not had any other treatment since 2017 so it's still worth carry on rather have side effects than the cancer growing that just me love to allxx

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Thank you, Sounds like you have had a good result if you had treatment in 2017. Very positive!

Lisa x

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Hi Lisa. Yesterday I had Avastin #14. If it wasn't for the need to work, I'd say I'm so far happy to put up with the side effects (mostly high blood pressure and being very tired/exhausted all the time, plus the leftover neuropathy pain in my feet from chemo, also headaches and cramps but not too bad).

Trying to sustain a full time job though is a killer factor for me, so I can imagine what you are dealing with. After a day of conducting training I am so tired I could drop right there, knees shaking. My husband says I've been a ghost ever since chemo.

That said, I'm planning to continue on Avastin a while longer if possible. Hoping/praying that I somehow manage to stop before I get hit with a bowel perforation.

Why? One reason being that I spotted a few research tidbits here and there about it being advantageous for extending PFS (progression free survival time) for low-grade serous OC patients. Mind you.. not overall survival time, but still something.

And also: I'm mindful that my state insurance might not be willing to cover it again if I stopped now and wanted to have it again in the future. It'd simply be too expensive for self funding. So this is my one chance to have Avastin. I'll risk it.

The job challenges I'm trying to manage by shortening my work week using old vacation days, at the moment.

Whatever your decision, I hope you recover soon and feel more like yourself again. Xx. Maus

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Hi Maus,

Hats off to you managing to work full time. I work 14 hours over 3 days and send the next 4 recovering. I love working but feel that i’m reaching a tipping point. I find I get the shake if I have done too much!

I have #14 on Monday so we are at the same point.

Wishing you all the very best and thanks for reminding me that i’m not alone.

Lisa x

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