Hi everyone,

[SEckett]

I am having avastin at the moment. My appointment was at 11 o’clock and the avastin is only half an hour . But there was confusion as to how much avastin I was having. One nurse thought they doubled the dose so I only come in every six weeks. I kept saying no I’m every 3 weeks and it turns out I was right but they have changed the protocol they now double the avastin. Sheenagh

[Cher96]

Hi SheenaghI go in for my 30 minute/every 3 weeks infusion of Avastin tomorrow. I’ll find out what the actual dose is. I’m curious about the double dose idea 🤷‍♀️

[SEckett in reply to Cher96]

Hi Cher96,

At first the nurse said if you were in every 3 then it’s dosage is 500 but as it’s a 1000 it’s every six weeks. I was lucky that a nurse checked with my cns and oncologist who said it’s was 1000 every 3 weeks. Sheenagh xx. Nurse said to me it has changed protocol but nobody told them.

[Katmal-UK in reply to SEckett]

Hi Sheenagh. Interesting….. I wonder why they have done that and whether it impacts side effects. I trialled Avastin back in 2007/8.

[Cher96 in reply to SEckett]

My dose is 1100 mg every 3 weeks.

[SEckett in reply to Cher96]

Hi Cher96

Has your dose always been that? The Hospital I go to must of just bought the double dose in. The nurses said it was nee to them 🤷‍♀️

[Cher96]

Yes, I’m pretty sure it had been 1100 every 3 weeks

[SEckett in reply to Cher96]

Hi Cher96the hospital I go to was definitely behind then. Thank goodness I have a new Oncologist. He seems to be in the ball. Sheenagh

[testarossa71]

Avastin, to my knowledge, is usually prescribed by weight (kg). If treatment frequency is fortnightly, then it is prescribed at 10mg per kilo bodyweight. If every three weeks, then at 15mg per kg. I am 5ft10, weigh 100kg, and get my treatment every three weeks. This means I get 1500mg. Initially, they infuse your first Avastin dose over around 1hr. Presuming that you do not have any immediate negative reaction to receiving of the dose ( as opposed to side effects of the following days), subsequent doses are usually infused over a 30 minute timeframe. Having said that, I have received it over 15 minutes on a couple of occasions - and not suffered any negative effects from that. Caveat - this is my experience, for my specific height and weight, in the UK. Your oncologist may treat you differently but you should always feel able to ask your consultant about what treatment you are receiving and how they calculate the dosage, frequency etc.

[SEckett in reply to testarossa71]

Hi testarossa71

The hospital I go to, the nurses there thought it was 500 every 3 weeks. So I’m not sure what they know about avastin. My infusion took 30 minutes eventually after they sorted it all out. My new Oncologist is on the ball. I was worried that the nurses on that day didn’t know any of this and kept saying your oncologist should of said it’s every six weeks when you have 1000. I said that he would of told me if that was the case. They then asked him he put them right they then apologised to me but they said it’s a new protocol and they didn’t know about it. I did say to them it is not a new thing. Sheenagh

[testarossa71 in reply to SEckett]

Flipping heck. I can understand why that would be frustrating and worrying for you. You really expect your chemo-nursing team to be absolutely on the ball when it comes to your specific regime, don't you. Especially when it should all be written down, double and triple checked by Dr, pharmacy, and chemo nursing team. And again for the rate check. You are right to stick to your gun about making them check something if it doesn't sound right to you. I have avoided issues in other areas of my life by questioning things that others have taken for granted, so can heartily recommend it. It is your life, your body, your treatment - you are absolutely entitled to know what is going on and to ask for clarification if reality doesn't match your expectation, treatment-wise.

[SEckett in reply to testarossa71]

Hi,The pharmacy and the doctor had written it all down correctly . My thing I don’t understand is the nurses that day. I just hope everybody else that comes in for avastin don’t get the same experience. My sister and daughter organised this great boat trip down the Thames through a charity. There was food, music, magician,, Father Christmas and lots of Christmas presents which companies donated and on that night my other sisters husband asked if chemotherapy hurt, I said yes. He said I think it’s funny I can’t take you seriously. He had been drinking but still WOW what is wrong with people. Sheenagh

[testarossa71 in reply to SEckett]

Wow. Your brother in law needs to be sat down and given a good dose of reality. I'm not sure I would have been able to stay polite. Don't get me wrong, I would have been calm, but he would be left in no doubt where he stood. Perhaps we should all swap people who say stupid or thoughtless things with each other so we can have a proper word with the offenders on behalf of the person we've swapped with, then send them home again to apologise... 😘

[SEckett in reply to testarossa71]

Hi,I mentioned on our family WhatsApp group and my sister said he doesn’t mean like that. I thought wow she thinks it’s ok. I totally agree with you.😁 sending you

Lots of love Sheenagh

[SEckett in reply to SEckett]

Hi

I remember when I was first diagnosed, I would look out the window or be doing the front garden and everyone that walked by I wished I was them. I just wish he knew how we all felt and wether he would still make stupid comments. Sheenagh x

[testarossa71 in reply to SEckett]

Yes. This! When I was first diagnosed, I went through the same thing. I would look at people just living their lives as my partner was driving me to chemo and think - I wish that was me/us. He recently said that he'd gone through the same thought process too.

I confessed that not long after diagnosis, I'd been sitting on the terrace at the front of our house and a friend and neighbour had stopped briefly to say hello on his way past. I remember listening to his chatty, carefree news and some amusing anecdotes about his family, always delivered with his lovely smile, and thinking 'he's got life so great' and in honesty? I felt a bit envious. I'm not proud of saying that, because envy is not a great trait and especially not in the context of a friendship. I didn't wish him ill, I just wished me not to be, if that makes sense.

However, a few months later, he received his own diagnosis - Stage 4 carcinoma of the bowel. He'd felt ill for a couple of months but, as a middle-aged overweight man with a couple of other health issues, and in the heat of Covid, it had been misdiagnosed as piles. And, just like that, his entire world, and that of his lovely family, was turned upside down. My OH and I did everything we could to help him and his wife with advice about what to expect at our local specialist Oncology centre, what benefits they might be able to claim, info about parking passes, getting prescriptions, where to get counselling, how to tell/or not tell other people etc. We could listen and understand in a way that his wider family just couldn't. Although his response to treatment was good initially, the cancer very quickly spread all over. He died less than 6 months after diagnosis, and just under a year from me experiencing that nasty green feeling of envy on my doorstep.

I think it showed me, that it doesn't really matter who you think you might want to be, that you simply don't know what their story is, what their reality is, what their future holds. Now, I wouldn't say that I'm happy about being ill exactly, but I am more settled about my diagnosis and more reasoned in my thinking about it, and the journey ahead.

As for your B-i-L, I wouldn't worry too much about keeping the peace to keep him or your sister happy. One benefit of having cancer is that you get to say whatever you like and they can't really argue back at you without looking like the giant asshat who lost it at the person who has cancer... 😇 🤣

Sending love to you xx

[SEckett in reply to testarossa71]

Hi,

I get everything you say. So sorry for your friends. But I get you. As read the bottom of your message you made laugh. Love it. 😂😂😂 sending you much love sheen ❤️❤️

[SEckett in reply to testarossa71]

Hi testarossa71,

I was just remembering the days after I was diagnosed I wouldn’t get out of bed I kept thinking and saying to my family why me why not those bad, cruel evil people. Sheen xx