AVASTIN ( Side effects )

Possibly this should be on another thread but as most people who are on Avastin have secondaries I thought it better here.

My wife started Avastin last Thursday, we know of the potential very bad side effects but she seems to have one not listed, it could come from the padriomate that goes along with Avastin.
The side effects are very, very painfull joints, plus initially great pain in the lower heel of her foot.
We have had to give her extra morphine for two nights now, anyone else experienced this. ?

Also having read a lot about the benefits and lack of benefits of Avastin, plus the potentially fatal possible side effects, are there any thoughts out there on whether the drug is worth having for breast cancer.
Has anyone refused Avastin ?

At nearly 60,000 Pounds per year ( 80,000 € in my case ) is it cost effective as from what I can find out it seems not to extend life sinificantly and can cause a loss in QOL.

I would be interested in any comments.

Thanks

Terry

Terry

There is alot here about avastin as there have been alot of lively discussions about it…is your wife having taxol at the same time ? I have painful joints and also I had the same heel thing, but it comes and gos…but definitely the hospital is attributing all of these symptoms to taxol. Would be very intersted to hear if these effects are coming soley from Avastin.,

I really hope that you are not payng this yourself.

CathyX

Hi Terry

You ask important questions. I was relieved to be told by a conusltant at the Marsden when I sought a sceond opnion that he would not particularly recommend avastin fr me. From what I have read of trials in US there is insufficient data on the usefulness of avastin in the scennd and third line metastatic setting. The evidnce of its use with taxol in first line setting is that it seems to prolong progression free survival but makes no statistical difference to overall survival.

Yes there have been some potentially fatal side effects…(a couple of people have died in the trails from heart failure) but we need to remember that this is the case for chemos alone too…no drugs come without risks.

In the USA some patient groups are very ambivalent about the use of avastin for breast cancer and personally I share that view/

I know people on it here who are sure that avastin is working for them because tumours have shrunk…but difficult to separate which drug is doing what.

I’m not surprised NICE hasn’t approved avavstin for breast cancer as the manufactruers have not presented sufficient data on efficacy to warrant licensing. In the US some insurance companies are also not paying…so is not a case of the drug being freely available in US.

Who knows? Somepeople may get a bit of benefit from avastin but it’s not the ‘wonder drug’ that was hoped for a couple of years ago.

My views are just those of a stroppy relatively informed and realistic patient…who doesn’t believe any drug out there will ‘cure’ her…understand why others my want to push for this drug but I wouldn’t.

Jane

Thanks for the messages. Thank goodness the Spanish health service pays for Avastin, and yes she is on Taxol as well so it looks like this is a side effect of the taxol, Katherine my wife sounds exactly like you.

My worry is and please do not take this the wrong way, that my wife will get all the negative effects from Avastin and her QOL will go down. After two and a half years battling this she deserves at least some time off to enjoy her, possibly, last Christmas. He liver tumours have grown, despite Taxotere, Xeloda and last but not least FEC for 9 rounds.

We just do not know whether to continue or not.

My wife prefers me to find out all about this and report back to her, I have tried to get her to write here but it is het choice.

XX

Hi Terry

as you know I am on avastin and pamidronate I was on taxol but still enjoying a chemo break
.
I have avastin and pamid every 3 weeks on Fridays, I am usually at hospital most of the day and feel a bit tired by the time we get home I always take 2 pain killers before bed ir I dont I have really rotten joint pain the onc has said this is a side effect of pamidronate. The avastin gives me a runny nose and a pain in my cheek bones this usually wares off once I am up and about. I also have a problem with protein in my urine but this has only happened since my last treatment.

Today is the first time I have had to have a visit from my gp, she was really lovely and put me first on her list of visits, she wanted me go in hospital but I asked if I was better at home as I dont want to pick up any bugs! I have an infection but she cant locate it so I am on strong antibiotics my oncology appointment is tomorrow so he will give me a good going over(his words not mine} He knows I would rather be at home and he also knows when I run out of options what my wishes are.

As I have said often I am truly grateful for the extra time avastin has given me but once it stops working I will stop taking it, fingers crossed I am not at that stage. It is all so bloody unpredictable, isnt it?

Hope your wife isnt feeling to rotten and please god we all have a few more Christmases.

Love Debsxxx

As I have said many times I am grateful for the extra time avastin has given me, but once it stops working I will stop taking it, just hope this is not that time.

Hi Debs,

Thank you as usual for your reply.

Our problem is we cannot see anything that actually states that Avastin will extend life, virtually all the reports say that although it may stop the tumour(s) growing, death will still be about the same time. ( I have yet to work that one out )
It may be that this is talking about people that had it as 1st Line and not third line, but it is very difficult to find out more. Certainly the US press gave it bad reports.

I think we ( my wife and myself ) have agreed to stay with it for the first three session ( one a week ) to see how it goes, then to make a descision for the longer term use of it.

XX
Terry

Terry
it is really strange and very difficult to know what the truth is. We went to Westminster re co-payment and I sat next to a guy from Roche he was writing things down and showing it to me but I did not have my specs on so couldnt see! I have spoken to him a few times on the phone and believe what he tells me but obviously it was private so can not put on the forum.
In January while in the solicitors office fighting for the right to gain access to avastin a call came in, sadly it was a husband of a patient who had died to an instant reaction to avastin so when I was given my first dose I had said my goodbyes to my family and told them not to blame anyone as it was my choice. Thankfully I am still around. One lady that has her treatment with me is having much better results than I am. The difference is her cancer was not as advanced as mine so maybe if we could have it earlier the figures may look better. Another young woman in Newcastle who had it in lungs and liver and could not walk is now enjoying a break from treatment as her lungs are clear and was able in September to take her daughter to school on her first day. The ladies on here that are on it seem to be doing well.
Lovely to speak to you again.

Love Debsxxx

Hi Terry again

The reason you cannot find reports about avastin proloning life is because there is very little (if any) trial evidence that it does.

I think the decision to take or stop taking any treatment is a very inidvidual thing (and not just about avastin) and some people may decide that they simply don’t want to keep doing tretaments for a possible few more months, if their quality of life is compromised by the treatment. I can’t imagine myself going on and on with treatment but its always such a balancing act.

Talk to your medical team,. talk to your hopsice team…sometimes I reckon two fingers to tretament is the best we can do…there is no reason why you wife can’t have abit of a break over Xmas if that’s what she wants and then maybe resume treatment later.

very best wishes

Jane

Thanks Debs and really encouraging news. ( With the obvious exception of the lady that died )

As we all know all Chemo´s are effectively poison so Avastin is no different there. At the end of the day we have to trust our onc on this. My wifes cancer is very advanced in her liver so I expect it is a case of "try anything "

It was noticable last visit that she spoke to my wife in English to make absolutely sure she understood the risks, normally we survive in Spanish but it shows how important it was to the Doctora ( Spanish female doctor—Male doctor = medico ) that we understood exactly what the implications are.

Thanks again.

XX

Hi Terry, I am one of those on Avastin. I decided to give it a try because the research that was available at the time I started indicated that Avastin, when given with Taxol every three weeks, increased progression free survival time from seven or eight months with Taxol alone to about fourteen months when used with Taxol. However, these are averages and I was told by my doctors that the spread was quite wide. Certainly, I have personally known one woman who died within a couple of months of starting Avastin and Taxol and another who got over eighteen months from this combination before it started to fail for her…

The evidence seems to suggest that Avastin and Taxol work best together when used as a first line treatment for metastatic disease in women who have not already had Taxol as a treatment for their primary breast cancer. When used as a first line treatment, it must be very difficult to arrive at meaningful overall survival statistics - there will be second, third and maybe even fourth line treatments after the first line of treatment has ceased to work. These will obvioulsy have an impact on survival times too. It must be as difficult to unravel the statistics to arrive at meaningful information.

I HAVE wondered whether Avastin might compromise the effectiveness of future drugs (ie whether people on Avastin die more quickly once the Avastin stops working) but nobody has any information about this. For now, I am hoping that this drug, which I find reasonably easy to tolerate, will give me a good long time before I have to look at other treatments. And who knows, if I get an extra window of time then maybe other drugs will become available to me in that time.

Deirdre

Hi
I have just started Taxol and Avastin, it was put in very slowly so that they could check for any reaction but I have been fine. I am told by my chemo nurse that it is working well for her other patients , the last spread of the cancer was widespread and rapid so i feel that I am running out of options. As far as statistics are concerned I am on the wrong end anyway, having started this with a good prognosis!
Debs I hope your GP is able to sort out your infection
Best Wishes Kathryn

I will try to keep this thread up dated re her side effects, just for future use.

So far extreme tiredness, sleeping over 18 hours a day. Severe pain in, initially right heel ( day two ), then both legs ( Day three ). Needed morphine for both to enable sleep.

Day four, today, pain is slightly better, but could not sleep last night even with sleeping tablet. Sleeping now.

XX

Yes, Kathryn, my first Avastin was put in very slowly. It’s scary, isn’t it? But now they do it in about half an hour with no bother. I too have always found myself confounding the statistics. Six years ago I was told there was practically no chance (I think about two percent) of my cancer returning. There are always going to be some of us here who buck the trend!

Deirdre

Deidre I think if I’d read Debs account of someone dying after their first infusion i would have been even more freaked ! I am told that the next one will take an hour and after that half an hour.
Terry do keep us posted about side effects, I am just tired but that may be as much from the Taxol
Kathryn

HI to all,
just got back from onc I have a nasty infection but they dont know where it started, looks like antibiotics are working as cold clammy sweats are less than yesterday and I was able to get out of bad and there was no chance of that yesterday.
Sorry did not mean to scare you all re lady who had bad reaction I found out after her pm that she had a heart condition, but it just proves that none of this is easy and some of the decisions we have to make are not made lightly. When I was on taxol I was very tired my week was cut in half I just slept and slept. My avastin was always over 3/4 of an hour after first one while on taxol, now it is 30 mins.

Love Debsxxx

Debs

I have no doubt that avastin has extended your life, maybe statisically used as a first line treatment it doesn’t but if you have ran out aff options and avastin shrinks the tumours then how can that not be considered as an extention to your life!

When my time comes i will definately be fighting for it.

I noticed you are on pamid as well, I havent heard of that what is it a chemo?

Hope you are getting better and that another drug becomes available for you by the time the avastin stops working.

Diane xx

Thanks Diane,
hope you had a good holiday.
Pamidronate in a byphosphonate for my bone cancer, we have just got back from a trip to my daughters and in Jan I could not climb in her bath but this trip I did it unaided so am confident it is working.

Love Debsxxxx

Just to add to all your comments. I’ve been on weekly taxol and bi-weekly Avastin since March since my secondary diagnosis in my lungs and lymphatic system. After 8 weeks and a PET scan in May there was no more evidence of the 4 strongly affected lymph nodes in my upper clavicle and a further clear scan in July apart from the tiny nodules which are still unknown in my lungs. My onc was hoping to keep me on maintenance Avastin but BUPA refused to ok it without taxol so after a welcome 8 weeks break from chemo (while I struggled to cope with my husband’s sudden leaving and subsequent divorce petition)I restarted on taxol/avastin in September and am on a 3 weeks on 4th week off schedule until at least April so I will have had a year’s worth of Avastin. It is so hard to know if it’s the right thing - have got so much on my plate already and coping alone is so much harder physically and emotionally but don’t feel I really have any choice as I’m determined to try and give myself the best chance I can. Just to say to Terry, that I got bad joint pains after my first few treatments back in March but haven’t had them for months (apart from with the Arimidex but that was definitely the Arimidex then and that’s better now too). I definitely find that each treatment is a little different. The weeks after my husband left somehow seemed to be fine as I was struggling more just to get through emotionally but have definitely been finding the last few weeks very much harder than I remember before but I have now had 19 taxols this year - 20th tomorrow! I live for the weeks off at the moment as my post-chemo weekends have been so debilitating recently! It really is a rollercoaster and so hard to have to make decisions when there are no clear answers but I don’t want to just fade away - I want to fight and get some sense that I have got some control in my life even though all aspects are under threat at the moment. I don’t even know if I’m going to be able to stay in the house or have enough money to live on but I’m still here and that’s the main thing. I get the very congested snuffly nose too from Avastin and also a bloody crusty nose but I think that’s the taxol as it cleared up for the short time I was on Avastin on its own before BUPa put the spanner in the works.
I’m glad that apparently I’m looking so well but it does get my goat a bit because people don’t realise how awful the side effects make you feel!!
Take care all xxx

Hi Anne,

Thank goodness my wife does not have to cope with that many problems, I just do not know how you have managed with Avastin and all the rest of the things going on in your private life. I presume the Avastin is your first line treatment ? This is where it seems to work best.

Thanks for the info on the joint pains, my wife is a little better today pain wise and we did not need extra morphine or sleeping pills last night. The tiredness is cripling her though and she is still in bed 15 to 18 hours a day.

XX

Anne So sorry that you have so much else to deal with as well as this awful disease, Bupa are paying for my Avastin with Taxol but my oncologist doesn’t know if they will cover maintenance Avastin, There is someone on another thread who seems to be covered by PPP so I am keeping a note of that.
Debs glad to hear that your infection is being dealt with ,there always seems to be some unforeseen problem.
Does anyone have any wise thoughts about blood pressure. Mine was high when they took it last friday but the nurse put it down to the stress of all that was going on but suggested I bought a blood pressure monitor which I did and it has continued to be very high. I don’t normally have a problem with my blood pressure as I have been used to being very fit. I will probably ring my chemo nurse later
Kathryn X