After the ecstasy and hope of being granted Avastin - the downside...

[PatsyH]

It has taken me months to write on this site again, because when I was finally granted Avastin back in April/May, I wanted to see how things went before reporting back on what I know is a subject so close to the heart to all of us, and I didn't want either to give unrealistic hopes or dash high expectations. And now, as I write, this is just MY Avastin story and almost certainly to bear no relation at all to anyone else's experience of the drug.

I started my first of three weekly Avastin doses during the final two lots of 6 carboplatin, which was proving pretty ineffectual and frequently delayed by my low platelet and neutrophyl levels. It was my fourth cycle of chemo and understandably my body was complaining a bit. So I was glad to see the back of the carbo and self-administered injections to try to boost my bone marrow, and was relieved to know that that is not a problem which occurs with Avastin.

So I had had my eighth line of Avastin with no apparent side effects and my CA125 gradually reducing. Good - it appeared to be working. Despite that I had been experiencing intermittent upper abdominal pains, mainly on my left side but sometimes radiating from back to front or all around that area of my body. At this point my specialist nurse, who I was phoning for pain relief advice, referred me to the pain management specialists at our hospice.The mention of the hospice froze both by Sister (who was staying at the time) and myself to stone - last chance saloon looming was our immediate reaction. How wrong we were. It is a WONDERFUL place where the concentration is on living as fit and long as possible, with pain managed well to allow life to carry on as normal, a fantastic support system, reflexology, Reiki, massage, counselling etc avaiable on request, and so much more to buoy one up. I cannot speak highly enough of it.

Nevertheless, despite seeing the top pain specialist there, the reason for the pain was somewhat unclear and eventually suspected as possibly being one of the cancerous lymph nodes pressing on a specitfic bunch of nerves. For a few weeks, while awaiting a previously booked scan, I swallowed a fair amount of slow-release morphine tablets and Oromorph (tastes like Benylin but with addded benefits!) as a top up to deal with any break-through pain, but along with everyone else involved remained puzzled by the pains when the Avastin appeared to be working well. What the hell was going on?

Had the scan on Monday 3rd October. On the Thursday evening, having felt exhausted and strange all day, I took myself off to the loo and proceeded to throw up what seemed like gallons of blood - black and granular as in partially digested. Cue a desperate 999 call, mad dash to hospital with husband and younger daughter, both as white as sheets in the ambulance with me. Referred almost immediately to the Clinical Decision Unit where nurses and doctors rushed around, 8 pints of blood were ordered for transfusion and I was wheeled into a theatre for an emergency endoscopy. A gowned surgeon or anaesthetist very bluntly suggested I might as well sign a Do Not Resuscitate form (DNR) seeing as I'd had cancer anyway for 7 years so might just as well cop it if it came to that during any operation I might need. (Not quite his words, but in essence exactly what he meant). I told him in no uncertain terms to stuff that and do whatever it took to keep me alive. I'm only 66 fer chrissakes - not 96, and even if I was... But in the end I didn't need an op as they put me on a drip for three days of something to quell any further bleeding, plus the blood transfusion. They saved my life, for which my deepest thanks. The bleed was caused by a huge duodenal ulcer which had burst. And guess what - all the pain immediately disappeared, so it had been a grumbling ulcer and NOT the cancer which had been causing it. My oncologist came to see me on the ward and, as I already knew from when he first prescribed it, explained again that a severe intestinal bleed was a rare but known side effect of Avastin, which was exactly what had happened to me, although it was not possible to establish whether or not it was 100% certain the Avastin had been the cause, I would henceforth be unable to have it. But he assured me the cancer is currently stable (thanks to the Avastin I did have, presumably) and that he still has other solutions up his sleeve ready for when they're needed.

Meanwhile, the utterly loveable gastroenterologist who is treating me for the ulcer, has today given me another endoscopy which shows two or three smaller - and healing - ulcers, and it is possible that tests might show I carry the H-Pylori (sp?) gene/wotsit which causes ulcers, is very common and easily treatable over the long term. He also took a biopsy which will show whether or not the ulcers are cancerous. Further endoscopy in 3 months time, by which time I will have seen my onc in January, had another scan, and the pair of them can put their heads together and take it from there.

So there we are. One not very encouraging story of life with Avastin, when I had hoped to be able instead to sing it's praises. But I know there will be far more success stories out there - I am thinking of Spanish Anna who I hope very much is still with us, and has survived for a good three years with what she called her liquid gold.

So the very best of luck to all of you who manage to get Avastin prescribed, as I'm sure it IS the nearest to a wonder drug for OC sufferers available at the moment. Dont lose heart and hope after reading my story and DONT ( I repeat DONT) refuse it. I was just unlucky, or maybe it was just an unfortunate coincidence. I got a whole new load of blood as a result (my daughter has promptly signed up to be a donor having realised how utterly essential it is to have adequate cross-matches) and I also discovered that our hospital is overrun with dishy doctors, at least one of which I am sort of now in love with (along with the stunningly beautiful Noel Fielding and the gravel-voiced, forever grouchy, but to me sublime Bob Dylan - you're right, I am a bit of a lost cause and an ancient semi-hippy. I'd have been a mega Goth or a punk had I been born a bit later), my husband bought me an ipad 3, and I am more aware than ever how every day must be treasured and how much I love life. So no fucking cancer is taking that away from me any time soon.

Christmas hope, love and blessings to you all

Patsy xxx

[Hidden]

Hi Patsy

Your story has left me speechless. You are a heroine to have gone through all that and write it up for us all with such grace and humour. What on earth was that hideous doctor/anaesthetist thinking of, well done for putting him in his place.

I was also on Avastin. It seemed to work well for me but very shortly after chemo the wound where my liver re-section was done reopened and has not healed yet (four months later), despite all sorts of interventions and gadgetry. My oncologist first of all said it was the Avastin, but is now talking about me going back on it as maintenance. I am not keen.

Really hope the ulcers will not be cancerous. It's funny isn't it, the discovery that ulcers were not caused by stress as had been thought but by HPylori is fairly recent but such a breakthrough. Wish they could make a similar one for cancer.

Enjoy Bob Dylan (I'm also a fan) and Christmas, and all the best

Monique x

[SueH1 in reply to Hidden]

Yes HPylori is interesting. It's a bacteria that lives in the stomach and gut and for many years doctors insisted nothing could live there due to acid etc. it was quite a breakthrough when they proved what it was. It causes various issues and can be killed off with a big dose of penicillin. Taking friendly bacteria to out-compete unwelcome stuff is worth doing and can be bought in tablet and yoghurt form.

[Hidden]

Hi Patsy

I'm reeling. What a an incredible story of fighting through a tough phase of this horrible thing. It has been a long and tough fight already; in the midst of the shock of a bleed which has to have been *utterly* terrifying, how DARE that w¥€ker shove a DNR suggestion at you like that? That's not care - it's callous people-processing and he should be fired. You keep on bloody fighting right the way you are, lady. You are one of the Avastin pioneers and absolutely should be telling all, good and less good. And keep leering at dishy doctors til the day you can't -- which I reckon is going to be a fair old way off, anyway, with that attitude.

Thank you for posting. I've only been on here a short while but am so glad to 'meet' each new person, you're all keeping me focused on the right thing - which is never, ever, ever, giving up.

Sue

Xxx

[blue100]

Patsy. Wow, thank you for sharing your story with us and the ups and downs of your treatment. I'm so sorry to hear about the difficulties that you have had with Avastin but I'm sure that you are glad you gave it a try or else you would always be wondering. Avastin isn't for everyone and this highlights to those of us yet to try it what we should be looking out for. Thank you.

My Onc tells me that with my history of blood clots and partial bowel obstruction, this mean that I'm not a candidate for Avastin as it increases the odds of more blood clots/bowel perforations. Has anyone else been given Avastin with a history of a blood clot?

Wishing you a speedy recovery and wishing you hours of enjoyment with your ipad3

The cheek of being presented with a DNR. I'm so glad you set him straight!

keep well xx

[citrine]

Thank you for posting this Patsy and I'm sorry you had such a rough time. It is really helpful to read different stories. Good to hear about your positive experience of the hospice. Not so good to hear that you had a DNR waved under your nose at such a time. What an unprintable . . . !!!!!!!!!!!

I hope the ulcers behave themselves and that you feel better very soon.

Thinking of you.

Love Mary xxx

[Whippit]

Dear Patsy

Thank you so much for posting your story. You've been through a terrible time and not helped by that DNR. But here you are out the other end and looking forward to Christmas with your family.

Your message is one of hope for us all. If Avastin isn't for everyone it's good you're been reassured there are other treatments available. I hope the endoscopy doc and the oncologist come up with a plan in January - meanwhile I hope you'll be able to put the awful experience out of your mind for a while, enjoy Christmas, enjoy your I-Pad 3, Bob Dylan and keep on eyeing up those dishy docs. That's probably the best therapy of all!

lots of love my brave lady! xxxx Annie

[Hidden]

Dear Patsy. Thank you so much for sharing your story. It's hard to find words to respond to what you have been through and the way you have dealt with it. To say I'm full of admiration barely makes a start.

I do so hope the ulcer problems are sorted, that you're feeling better, and that that continues for a very long time. Oh, and that you don't have to go to a hospital to find another dishy guy to develop a crush on!

Have a lovely Christmas

Linda xx

[MargaretJ]

Keep on fighting Patsy! I am too old even to have been a Hippy! Simone de Beauvoir, Jean Paul Sartre and Juliette Greco were more my era, long hair, long sweaters, sobranie Black Russian, red wine and existentialist philosophy late at night in smoke filled rooms! I no longer smoke but I can still be awash with nostalgia at a Truffaut film!

I am 72 and I am not ready to give up either! I do have an advance directive because I do not want to wake up trapped in an unresponsive body, unable to communicate but that is different! Were there not a few scalpels handy? My personal response would be to grab one and threaten to cut his fucking balls off! HOW DARE HE PRESUME!

We a feisty lot on here aren't we! Its why I love you all! Rebels all of us! Determined to fight this thing to the end!

Love and happy Xmas!

M xxxxxxx

[wendydee]

Hi Patsy! I have been wondering how things are with you....what a story! I am so glad that the Avastin has done its job so far, but, what a horrific time you've been through...you deserve some peace and quiet now, enjoying all the 'scenery' at the hospital, loads of lovely Bob Dylan music (I love his stuff too) and a bit of calm before Christmas. My friend was treated for H Pylori and made a complete recovery after years and years of pain. Hope it turns out like that for you, and that you are still saying BBTFC! Love n hugs to you and lots of hippy-dippy good vibrations (yeh, I am of that generation too) you are such a strong woman, a real inspiration

Love Wendy xx

[doreenharwood]

Hi Patsy,

You have been through a rough few months but hopefully now you can get back to normal and enjoy Christmas and a long and full life. I don't think our hospital offers Avastin but if at some point they start I will definitely say yes as it does seem to be a wonder drug.

Just wanted to say looking at your picture I cant believe your 66, cancer certainly has not aged you I would have put you in your early 50`s.

Love Babs x x

[jennybutler in reply to doreenharwood]

Just for interest the cure for hplori was discovered years before made available by greedy pharmiceutable as they made a fortune from gaviston etc. and worried about income dropping from a cure.Reminds me why taking so long to find cure for cancer.money money money ,The mind boggles. But so glad your ok after all you have been through best wishes jenny xxx

[Hidden]

Hi Patsy,

Not much makes me speechless (but I am) thank you so much for sharing your journey with us, I feel so privileged to be let in on what must have been such an horrendous time and yet you make it seem like a walk in the park (I know it's not) best wishes and love x G x

[Hidden]

Hi Patsy

Thanks for sharing this info with us - it is so useful to hear about other people's experiences, particularly around use of specific drugs. Wishing you all the best for the next steps, have a lovely Christmas!

Lynn x

[Hidden]

Hi patsy,

Gives us all food for thought. My professor did mention me going on avastin if he could get the funding. I see him on Tuesday for my 3 session check up. I am hoping my ct scan may show what the inflammation in my stomach is..... Perhaps I don't want avast in!! I could do with the dishy doctors, mine are all female (apart from the professor), but I don't want an unfeeling anaesthetist . Why are some doctors so unfeeling?.

Enjoy Christmas.

Love n hugs

Viv

[PatsyH]

Thank you ALL so much for your responses which have been really touching, and laugh out loud when lopping off goollies with a scalpel came into it!

There is a postscript to my main blog, as I had forgotten to mention that after leaving hospital the DNR episode, which had really shocked me, preyed on my mind a great deal, plus a well-meaning comment from one of the hospice care nurses who came in to help me at home for a few days, who said in lowered tones re the OC "Tell me. Do your family all know how dreadfully, seriously ill you are?" Unspoken reply - yes they do, and thanks SO much for reminding me, just as I was feeling great relief at having scraped through the ulcer scare still alive!

Anyway, my general anxiety levels shot through the roof so I made an appointment with my lovely counsellor at the cancer unit and poured out the whole saga. She was so livid, FURIOUS about the DNR business she actually used the F word herself (she is normally very lady-like, as we all bloody sodding well are, of course) but the upshot was that she has put in a written complaint to the relevant department, stating that what was said was completely unethical etc.(I didn't want to make an official complaint as I had more important things to be bothered with,like staying alive) She also double-checked to make sure nothing at all DNR-y had slipped in through the system and, as she always does, talked me through all the only to be expected reasons why I was feeling so freaked out and helped me get things back in perspective. She explained that probably my anxiety was feeding on itself and in turn giving me the panic attacks I was experiencing during sleepless nights and that I must see my doctor for some anti-anxiety tablets just to get me over the next two or three weeks. This I did, at first taking 5mg Diazepam twice daily, and have now cut down to one at bedtime, which I will gradually faze out as anything 'azipam-ish' is highly addictive. The pills have worked, I am feeling much calmer, so she was right to suggest it. I have also been taking 20 rising to 40 mg daily of Citalopram anti-depressant more or less since I was first diagnosed, so the fact that I often get comments about how cheerful I am in the face of this illness is propably more to do with chemicals than any bravery. Whatever it takes...

It was dropped into conversation by my gastro doc that, while not preciselly recommending it, a glass or two of red wine is quite acceptable of an evening. You're telling me, and I've just discovered the brilliant Boozers' Blog (yes PRChick/Sue - I think I mean yours) but am afraid my level of recommendation wine-wise extends at the moment to 6 bottles of Isla Negra Shiraz or Merlot with 25% off from Tesco and various Aldi bargains. I cant afford truly decent stuff unfortunately, especially as one glass can sometimes be translated into one bottle. Dipsos Unite - but we've got a good excuse. I cant help but think that the like- minded bloggers on here would have one helluva good party if we ever got together! Squeeze in a bit of Roy Orbison, Buddy Holly, ok the Beatles if you must, Rod Stewart, Jimi Hendrix, Ketty Lester singing 'Love Letters', Steel-eye Span, Stones and Bob of course, Janis Joplin, Joni Mitchel , Edith Piaf and on, and on... Next techno gadget on my list is an ipod so I can download all my favourite tracks from way back, as all my old LP's and singles are boxed up in the loft, and who has a record player these days? Also what's this MP3 stuff? I dont understand it all and still haven't got the hang of my ipad. I blame the chemo.

Love again to you all. Patsy xxx

[Hidden in reply to PatsyH]

Hi Patsy,

I am glad you got some (at least) redress on the actions of DNR and you now sound ready to take them all on haha.... have you seen Annie's blog on desert island disc?

There were requests on there for our sixties/ seventies and even fifties fave songs great stuff also we are all meeting up in May 17th for a get together (the day before members day) care to join us ? now there's a challenge love x G x

[poleglass]

Hi! patsy your story gave me hope.I have had 3 sets of chemo in two and a half years and am a 3c Just finished 3rd. set 6 wks. ago 18 weekly taxols.tumours have gone except small one over kidney but my remission has been short lived the last 2 times.I have been told avastin can only be given to newly diaognosed 3c patients who are a 3c so it has given me hope that you were on 4th. line chemo and managed to get it.maybe its just because i am in n. ireland.glad to hear you are on the mend.xuna belfast

[Hidden in reply to poleglass]

Hi Una,

Sorry you've been (and are going) through so much and wish you all the best in your quest to get the right treatment love x G x

[PatsyH]

Hi Gwyn

17th May sounds brilliant and I have asked Annie for the details and really hope I'll be able to come. As for the music, even hearing Poetry in Motion gets to me, as it reminds me so much of skiving off to a local fair where it was playing almost non-stop (forbidden to go, but one found ways) and lurking pathetically around the greasy, spotty young men who manned the bumper cars etc. I was only about 15, niaive as hell, and completely clueless really. How innocent we all were then but we made up for that big-time later on! Well, I certainly did. Wiith my boyfriend, later my husband for 12 years I went to music festivals, folk clubs to see Martin Carthy, The Young Tradition, raved away to T Rex, I think on Epsom racecourse, and then went quite berserk when an unbilled Eric Clapton sauntered quietly onto the right of stage and struck up one of those incredible riffs on his guitar. The place simply erupted! Saw Rod Stewart, jimi Hendrix (twice), Cream and Blind Faith live at the Albert Hall. And also - who else did this -saw Richard Harris at Hammersmith Palais singing Macarthur Park!That was a total one-off. Saw Hair twice (oh how sweet annd innocent that seems now, but then we thought it was well radical!) and Lindsay Kemps's Lady of the Camelias at Shepherds Bush - camp as hell , but very striking and strange.. And Arthur Brown on Epsom racecourse, dropped in spectacularly by helicopter and then playing 'Fire' so loudly that they couldn't hear the audience frantically yelling for the spot lights to be directed to the corrugated iron roof surrounding the racecourse walkway which was caving in due to the weight of fans sitting upon it, who were crushed as it collapsed. What a terrible night, ending with the constant whine of ambulance sirens as they rushed to the scene. I think that was my last festival.

Maybe see you et al on the 17th

Love Patsy x

[Hidden in reply to PatsyH]

Patsy I am very envious of you for seeing all those legendary figures. I saw Cream about 5 years ago when they did a reunion at the Albert Hall. They did well, but of course they were not how they must of been in their prime. You have some great musical memories.

On the other subject, good for your counsellor, that idiot needed to be told!

Monique x