I hope everybody is staying safe, and coping ok in these difficult times.
I’m really aware that some people are having a desperately hard time with treatments being cancelled or postponed, and I hope that my post isn’t insensitive in anyway.
I’m really hoping you won’t mind me picking your brains about my first line treatment that’s due to start next Tuesday. I had my pre assessment today and was told that I’d be having the standard paclitaxel and carboplatin over 6 cycles, as I’d expected. It’s seems though, that I’m also being given Avastin on the 3rd cycle that will continue for 18 cycles. Stupidly I didn’t think to question it, I just thought it was a good thing as I’d read that some women have wanted Avastin but have been denied it. I’m just wondering now why I am being given it?
I was diagnosed with high grade serous stage 3c
Thank you for listening, any advice would be great.
Emma x
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Hi Emma, I only had the Carbo and the taxol the first time round so not sure about the other drug. My first treatment knocked me for six but they reduced the dose after that and it wasn’t as bad as I thought. Very tired most of the time but nothing major other than that. I wish you well for your first one. I just started 2nd line two weeks ago and am grateful no one has said it’s being cancelled or postponed. I am in Scotland. Best wishes Karen
I’m glad you got your chemo dose sorted initially, and that your second line treatment is going ahead as planned. I hope it all goes well for you, and you’re NED before you know it!
Hi Emma, Avastin acts differently to chemo ( which kills cancer cells).
Avastin prevents the development of a blood supply to tumours, cutting off their ability to grow and thrive.
It is often added to first line to give you the best chance of getting clear of the disease with no recurrence.
In general I found it much milder than chemo and it doesn’t stop your hair growing back etc. I had 16 cycles as maintenance after chemo...but back then it was funded by the cancer drugs fund, so came after chemo.
Avastin does have some side effects and when added to your other infusions, makes for a long day in the chemo chair.
See how you go but having had to fight to get access to it, I am always pleased to hear that new patients get it as a matter of course xx
Thanks Lyndy, great to hear your positive experience of Avastin. I had heard, like you say, that people have had to fight to get it which was why I was a bit taken aback when the oncologist said I’d be having it.
If it gives me a better chance of being clear of disease, and less chance of recurrence, then I feel very grateful that I’m having it.
I've had Avastin on several occasions (alone and with paired with other drugs). It is an antiangiogenesis agent and is used to stop the blood flow to the tumors making them easier to attack by the chemotherapy.
For me, it has been easy to tolerate. First time I took it, it raised my blood pressure and I was given medication to keep it in check. Since then, I've had it twice without and issue.
You will probably be advised to avoid NSAIDS while you're on it because of possible bleeding complications.
I had my first cycle today and I am having exactly the same drugs Avastin for 18 cycles and the other two for six (with surgery thrown in at some point in the first 6 cycles). The nurse referred to Avastin as immunotherapy and I also think - and only think - that some areas can't or won't prescribe it - I don't know if its the cost. But, like you, I didn't think to ask - there is so much thrown at you that you can't take it all in.
I was so well looked after - it did take ages but they said it would get quicker as the first few treatments are administered very slowly to check for allergic reaction. I was trying the cool cap and had a trial run for 15 minutes and even without it switched on it gave me such a bad headache and it adds time - I was told two hours - to the treatment so I decided not too, though I know some people have no problems with it. What was good was seeing and chatting to other people further into their treatment and just getting on with their lives and looking perfectly well.
I do hope it all goes well for you - I have found this forum so reassuring and full of lovely people.
Thank you for your reply Lesley, it’s great to hear that your experience was good today. I felt very reassured after my visit today, the nurses and oncologist were so kind and made me feel safe. Like you say, there’s SO much info’ to take in, my brain is frazzled tonight!
It sounds as though we are having exactly the same treatments, it’s reassuring to know that your first cycle went so well, and you felt so well looked after.
I am pleased that I’m getting the Avastin, I just started to over think it when I got home, as I know other women have had to push really hard for it. I wondered why I would be given it.
Interesting what you say about the cold cap, I don’t think I’m even going to try it, I’m kind of thinking that having no hair whilst in isolation will be ok!!
Just thought I'd say that in speaking to another lady - on the same drugs as us but further along - regarding the side-effects, she said that apart from occasional dizziness and feeling really tired on the day after each treatment and the hair loss she was okay - no sickness or nausea.
I know it can have a delayed start, but I have been fine on the anti-sickness tablets - in fact have turned into a total gannet (never ever eat a massive bowl of fruit, half a large easter egg and then jacket potato with beans and cheese, followed by a bit more chocolate unless you leave at least 30 minutes between each!).
And I agree with the hair - I have kitchen scissors on standby and a colleague has already ordered a gift for me of suitable scarves!
Good luck on Tuesday - let us know how you get on.
Take care
x
Hello Emma, I am 3C, and had a biopsy yesterday. I find I am trying to assemble so much information, at a time my brain is shouting ‘ No No No’ .....I can’t offer any experience, but wanted to say how pleased I am that you have secured treatment and send best wishes.
Oh bless you, and thank you for your reply. Six weeks ago I was where you are now, and it's a terrifying place. I understand totally your need to glean information and make some sense of what’s happening to you, this new covid world makes our journey a scary rollercoaster of uncertainty.
I was lucky that I had my surgery just before lockdown, and the consensus from the MDT was that I should have the chemo.
I know it’s such a hard thing to do for you right now, but try to trust that your ‘team’ will be doing everything they can to get you treated, I’ve been overwhelmed by the commitment of the surgeons and oncologists as they navigate their way through this, they will be fighting to get you the treatment you need. Do you have a support nurse? Although mine has been moved onto covid wards now so isn’t as easy to contact, I found her a huge support through the initial uncertainty, even with out covid looming, I felt that plans for my treatment would change without explanation which made me panic, she helped make sense or it all.
I know it’s easy to say, and I’m guilty of it too, but please don’t google. Even on my short journey I’ve learnt that I’m not a statistic, we all have different cancers doing different things, and we all react differently to treatment etc. And so much online information is out of date.
I really feel for you, and if I can help in anyway please feel free to message me,
I’m no expert as it’s all new to me, but I’m on the same journey as you, just a tiny bit further ahead.
I was diagnosed in October 2017 Stage 4 after an operation for suspected bowel cancer- it turned out to have originated in the Fallopian tube.
I too had Avastin added to the last three carbo taxol infusions and then carried on for another 10 after. I asked to stop as I’d had enough. My CA125 was 9 and PET scan showed NED.
My blood pressure was higher and I had some joint pain and nosebleeds whilst on Avastin, but otherwise tolerated it well.
I’m due a blood test later this month and will see my oncologist early in June. If bloods are fine, no scan.
So exactly 2 years after finishing chemo I’m still here and NED. 🤞🏻🤞🏻it stays that way.
Wishing you well on your journey- there will be ups and downs both emotionally and physically. Try to look for the positives if you can as it’s a very slippery slope once you let the fear and worry take hold.
I had Avastin added to chemo and was very pleased to be offered it. The criteria is that you need to have a certain amount of cancer cells present after your op. I can't remember the exact amount.
It is given after the chemo, so makes for a long treatment day. Also the side effects I had were increased blood pressure for which I had tablets, slightly bloody nose and really sore and aching joints. I used to relax in an Epson salts bath every night, then fall into bed! I think this helped me sleep.
Wishing you well on this protocol, it gave me two and a half years NED.
I am OC 3b and just finished 6 carbo/taxol chemo with Avastin added for the last 4. If you have the cold cap then Avastin doesn't add any time as you have it while the cap is on after chemo is finished. If not it's +90mins first time then +60mins then +30mins for the rest. I think Avastin is fairly standard treatment - people are only having it stopped when they are having it alone after chemo. Avastin affects my voice - I sound weird & I lose my voice easily but apart from that & a bit of a stuffy nose it's been OK. Good luck!
Hi Emma. I was diagnosed 3c 8.5 years ago. I had a recurrence after 18 months. For 2nd line I had Carbo/Caelyx plus Avastin. Avastin has been a total godsend. It was a trial I signed up for that said I could stay on Avastin indefinitely, as long as the disease didn't progress & the side effects were acceptable & I stayed within all the required limits. I've had in the region of 90 infusions (3-weekly) over 5.5 years. The only side-effects for me are a runny nose, especially in the morning and when I eat & it raises my blood pressure, ever so gradually. Consequently, after 5.5 years of infusions, I'm about at the limit of BP medications but that won't apply to you after 18 months.
If, after your chemo has finished, small growths should begin to slowly grow, Avastin is capable of knocking them off. Infusions, after it's been decided you tolerate it fine, will probably be over 30 mins but they are able to give it over 10 mins.
So, summed up, the chemo gets you into remission and the Avastin keeps you there.
Good luck with it all. You're already sounding as if you're on top of it all. You'll be fine. Best wishes. Pauline.
Thank you so much for your reply. It’s reassuring to hear your story. I hope things remain good for you, and you are keeping safe and well right now xxx
This is the standard 'Gold Standard' treatment for ovarian cancer at the moment. I'm on it and had treatment 5 yesterday having had de-bulking op. in December. My CA125 had gone from 360 pre-op, 68 post-op to 9 post treatment 4 so you can see it really works! Think of that when the horrible side effects kick in which don't last forever and you never know you may be luckier than most. Paclitaxel and carboplatin are chemotherapy and Avastin is immunatherapy to stop the blood supply to the tumor as you probably know. Take care and any help required don't hesitate to ask. It helps to write things down when talking to the oncologist then you don't forget.
Hi Emma I am 4b inoperable. I had carboplatin and paclitaxol for 8 treatments avastin added to the last two then 16 more which I finished last month. Scan showed that no new cancers had started and what is there has not grown since starting on it 14 months ago.
So its done its job well. Side effects much easier than chemo. Joint pain the worst plus very sore nose but my hair grew back and my blood pressure only slightly raised. Good luck.
Hi Emma , I had it with my first line treatment too . It’s still funded in England for those who’s tumour can’t be completely removed by surgery when they are diagnosed . Mine was inoperable - so had it along with carbo taxol . I’ve been incredibly lucky and am still in remission and disease free 7 years later - hope it’s as good for you !
Look out for a new trial starting soon called Valtive 1 - they are testing a new blood test ( Tie1) for avastin to see if it’s working ,. If it stops working they can quickly change it to another drug that might help more The trial has just been funded by cancer research uk and has been researched and set up by Prof Jayson at the Christie . Worth asking your oncologist about it - not sure when it’s starting but it will run for a few years . Which hospital are you under ? Good luck 🤞xx
Wow!!! Your story is just what I needed to read this morning, thank you for replying.
I begin my chemo on Tuesday and have, until now, kept positive and upbeat, determined not to let the scary (often out of date, I know) statistics interfere with my mindset - I’m relatively young (53), fit, healthy.,..
It’s probably totally irrational, but I think it was hearing on Friday that I would be given Avastin alongside the Carbo/taxol that made me over think everything. I didn’t question the Onc at the time, just kind of thought it was a good thing to have the chance of another drug. Later became anxious that maybe the cancer is a higher stage or there was more residual disease after surgery than I’d been told initially. My crazy overthinking anxious mind!! I think I’d read somewhere that recurrence after a maintenance drug is more likely? I might have just conjured that up from somewhere. Did you have Avastin for 18 cycles? How fantastic that you are in remission, such an inspirational story. Long may it last for you.
I’m being treated in Cornwall at Treliske. The gynae/Oncology team are great, and so far Cornwall hasn’t been too badly hit by Covid - so treatments are mostly going ahead 🤞
Good luck Emma , what a wonderful place to live . I lived and worked at Treliske in 1985 for 6 m in a and e ( then at City hospital)and loved it there . I had 18 treatments of avastin and it wasn’t too bad - nothing like chemo . Let me know how you’re doing x
Just a warning Avastin prevents clotting. I had my keyhole biopsy then started chemo with Avastin, after a week my wound started leaking fluid at an alarming rate, visit to GP and hospital to get it sorted, have not had it since. Good luck
Hi Emma, thanks for reaching out. I had been on chemo since 2016 with some time off for brief NED periods. I just finished a year of carbo gemzar. (Mine is something between ovarian and endometrial btw) I have been on Avastin most of the last year with the carbo gemzar. I had been NED most that that year. Now I am doing another year of Avastin. I am still unclear about the side effects. None of my doctors will tell me which problem is due to what. They don't know. Mostly my tendons seem inflamed a bit, but I do lots of exercise so I feel pretty good. I really don't understand symptoms of Avastin. My doc seems to think that Avastin helped me a great deal as I am about 8 months in remission. I do feel pretty good in general and I mostly attribute that to health eating and exercise. Good luck you the next treatment... it sounds like it will be helpful and not so hard.
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