Hi
Just re-diagnosed with secondary breast cancer and they’re talking about putting me on a course of Avastin in a couple of weeks, coupled with Taxol (which i had before). Dreading going back for chemo a second time round (last time was 3 years ago). Anyone know much about what to expect with Avastin?
Amy x
Hi Amy
I have moved your post to the secondary treatments room where users who are undergoing this treatment are more likely to read your post, hope you don’t mind. The following link will take you to an information page about avastin which you may find useful:
breastcancercare.org.uk/server/show/nav.400
Best wishes
Lucy
Hi Amy,
I had 22 weekly taxol last year combined with fortnightly Avastin which really has worked for me so far as my last scan a week ago was completely clear after being diagnosed in Feb last year with secondaries in both lungs and lymphatic system.
It is difficult to know what side effects are from the taxol and which from Avastin but I had a constant snuffly nose, nose bleeds but nothing too horrendous. In the beginning I did have achey joints but this stopped early on. I also had bad headaches but think that might have been from the steroids. I also got very tired but this was later on and after 9 months of it I wasn’t surprised but for me to have each 3 monthly scan progressively better and then being absolutely clear by end of last November was fab! I’m off chemo and Avastin for the moment until I get progression which I’m hoping won’t be for a while.
I had my treatment through BUPA. Are you privately insured too? My oncologist had hoped I could stay on maintenance Avastin but BUPA would only authorise it in combination with chemo.
Take care Amy and let us know how you’re doing.
Anne
Hi,
I started avastin with taxol last Feb and stayed on it until May I had lots of clusters in my liver and it was ‘sh.t or bust time’ according to my onc. I had brilliant shrinkage over 60% so I was able to have a chemo break but I had avastin every 3 weeks with pamidronate. I had to go back on taxol with avastin every other week in October last year as I had a new problem with omental infiltration. I started a thread 'back on taxol" so if you want some bedtime reading have a look at it.
There are others on avastin and they post on the thread as well.
Side effects for me have been stuffy nose, pressure going out in sunlight, my blood pressure has risen, all my other side effects are due to taxol. The total tiredness being the worst.
Good luck with the treatment my belief is together taxol and avastin can work really well.
Love Debsxxx
I started taxotere and avastin last Feb and had six treatments, spread three weeks apart, till June. I found it really tough going. My immune system really took a knocking and I was hospitalised twice with infections. I also had really bad nosebleeds and slow wound healing.
The combination did shrink my tumour by about 60 percent by June, and then I stayed on three weekly avastin till October when it was found that I had further spread and so came off.
There is a lot of controversy about Avastin, and whether it makes any real difference to time to progression. Research produced by the manufacturer a year or so ago indicated that the average time to progression while on avastin/taxotere was thirteen months, compared to seven months from taxotere alone. But research conducted by the Marsden shows that there is less than a couple of weeks extra time from the avastin/taxotere mix compared to taxotere alone. I got just eight months and do confess to feelng cheated. (Time to progression is measured from the day you start the combination to the date that progression is confirmed). Other people have had much better results.
I think Avastin does make the side effects more marked. I coped quite well on my original chemo, three years previously, but found ordinary life extremely difficult on taxotere and avastin - tiredness, mouth ulcers, taste changes, infections, nosebleeds, watering eyes. I know I am not painting a lovely picture - sorry!
But as I said, it has done a good job with some, so the side effects in these cases are probably worth it.
Hope it does well for you too!
Deirdre
Thanks Ladies. I hated chemo the first time (but show me someone who doesn’t) but am determined to eek every extra month of life that I can - I have so much good stuff to live for! What surprised me from your posts is that so many of you have continued to have chemo for so long. The docs still aren’t talking about the long term big picture with me yet but I’m piecing it together from reading online. Has anyone found they are able to return to ‘normal’ life (work, social, travel etc) after their secondaries chemo? That is what I am hoping for - a bit more ‘living’ time, rather than ‘getting through chemo’ time.
(ps - yes am with PPP - they have asked for a medical report from my oncologist before they will authorise the treatment so interesting to hear that BUPA have not supported maintenance Avastin - will cross that bridge when I come to it!).
Amy- i am with ppp at the moment - i have a very good policy with them, but without a doubt they are meaner than BUPA. My only advice is have a really good read of what your policy covers, because they will try it on - to limit your cover even when a treatment should be covered. I don’t know if that is a deliberate policy with them or just inpept administration,
For Avastin they agreed to 8 months funding which covered 18 weeks of taxol plus of avastin, my onc believes there is no benefit from maintencance avastin, and i did not push it with him,
cathyx
Hi Amy
I am with BUPA and am about to have Taxol number 15 tomorrow together with Avastin which I have every 2 weeks. The plan is that I will have a scan after 18 Taxol but BUPA have authorised 18 months Avastin or until I have further progression. I feel confident that the combination is working as my tumour markers have fallen steadily and I feel much better and my breathing has improved from the position I was in in September.
I have found the side effects manageable, I have a constantly runny nose and am now finding it all very tired, I am not looking forward to this cycle but I have cotinued to work , although doing shorter days as I flag by late afternoon and most evenings find me under the duvet with a book.I am out walking with friends at the weekend, we have entered the Ribbon Walk at Blenheim Palace at the end of May!
I really dreaded going back on an aggressive chemo, I had been on Xeloda which didn’t really have a lot of effect for me.
I am due to see my oncologist on tuesday to discussthe plan for the next few months, hopefully with Avastin continuing
Love Kathryn
Just to update - 3rd rads for eye secondaries tomorrow. They reckon it will completely fix my eyes within a couple of weeks so fingers crossed. I hadn’t heard of secondaries in the eye before.
Also going to drag my lazy ass back to work in the morning to talk through next steps with my boss. (Only started new job on 2nd Feb - great timing huh!) Am planning to ask them to hold my job open for 6 months and take the time out - fingers crossed. Last time I had chemo I worked part time through it but this time I don’t think I can manage it because:
A) job is national role with travel and needs to be really responsive on a daily basis which I can’t be on chemo.
B) chemo this time is weekly, not every 3!
C) I am in a better financial position after ex-hubby pauper ran off with girl from work (lovely how they do that!) so don’t have the same mortgage worries as before.
D) I know I pushed myself harder than I ought to have done last time and don’t want to do that again - I’d get home from work and be absolutely crashed out - no free time for me or family.
Am a bit nervous about this decision - am hugely independent so it is a big step to become dependent on others. Also, work is really meaningful and stimulating to me so worried about keeping happy and active when stuck at home.
Debs - followed your advice and been reading ‘Back on Taxol’ as bedtime reading - half way through and have found it informative, funny and frustrating all at once. Quick question re hair - has everyone lost their hair on the taxol? I had already lost all my hair from EC when I had it last time so didn’t really know whether the Taxol had affected it? How long did peoples hair last when it did fall out? Is it as drastic as Epi?
Will update you how I get on with PPP. They have assigned me a specialist nurse personal contact this week - I am suspicious - is this for my benefit or theirs so they can keep track of me?
Amy
Hi Amy
I am also with mean old AXA PPP. I have been designated a ‘special’ patient for two years now. Be interested to knwo if they will agree to avastin (not recommended for me and I have doubts about it based on trial data…but would like to know if they agree with an onc recommendation.)
I lost all my hair on weekly taxol within three weeks…didn’t use cold cap. Its about an inch long now but wrecked…very thin…I’m on vinorelbine which doesn’t usually cause hair loss but think it is affecting quality of my hair…hate it and I’m someone comfortable with very shoort hair.
very best wishes with your treatment.
Jane
I am so glad to read this thread! I could not find anyone that was on Avastin until some time ago, so I am glad to see that my strange side effects are actually not so strange. I am on my 5th cycle of Taxotere and Avastin, and like the others I have bleeding and runny nose, watery eyes, extreme tiredness, fever, very painful mouth ulcers (I use thyme infusion to rinse my mouth and it does help). By the way, any remedy for watery eyes? I really have problems with it, even reading is a struggle. After the first cycle I got hospitalized with neutropenia and high fever, and my mouth ulcers were so bad that I couldn’t even drink a soup, but then they gave me Neulasta, an injection to stimulate the bone marrow, and things got a bit better. Fortunately I don’t have any nausea that was for me the worst side effect of the other chemos. My three month scan showed some shrinkage, for the first time after one year of different chemos, and I am delighted to see that also the others got good results, it makes me feel more positive! Luckily in the hospital where I am treated here in Barcelona, Avastin is given to everybody who needs it and there is no need for a private insurance.
Like Amy, I keep doing my job, the weeks I feel ok, and in the same days I also go to the gym, or swimming, and even went skiing four times this winter!
Well, thanks to all of you for the positive news!
Sabrina
Hi Sabrina
I had ALL of the symptoms you mention below - my medical team attributed them all to taxotere or taxol, even the bloody nose they thought was the taxol.
Barcelona is such a lovely place, lucky you to live there, I have some very happy memories of it - you can see the picture is myself and son at the waterfront …
Cathyx
Hi Cathy, Barcelona is indeed a wonderful place, I live in a village outside Barcelona, because the houses here have London prices, but my hospital is in barcelona, by the way let me know if you want to come again!
My doctor actually told me that the bleeding nose is caused by Avastin, but who knows? I would love to find something to deal with my watery eyes, I look like I am crying all the time, and I see nothing!
ah, and I forgot to mention the neuropathy (feet and hands)! what a nice life!
xxx
sabrina
Hi – I’m dealing with my second recurrence since 05-- I have one more cycle of three weeks on Taxol/Avastin and then will go on Avastin for maintenance. So far I’ve had good news from the scans that were done a few weeks ago —the cancers can’t be found There will be a rescan. but I’m very hopeful. I haven’t had a lot of great success with treatmentrs up till now. Avastin doesn’t seem too horrible but I do have the continual runny nose, bloody nose.
Hi Lucy
I’m currently on Taxol only (Avastin suspended, possibly stopped altogether, due to very BP) - and the SEs, altho’ remaining mild compared to, say, Taxotere, seem to be worse on Taxol alone than with Avastin as well.
Certainly having more in the way of runny/bloody nose and more fluid retnetion, tho’ I must stress, the SEs are still not severe.
Anyone else found this?
X
S