I keep an eye on this site on behalf of a very dear friend, diagnosed stage 3c last August. She and I find your questions and answers a constant source of support; I hope nobody minds me asking something on her behalf. She is about to get her latest CA125 result, post radical hysterectomy and 6 months post chemo. Her oncologist (at the Marsden) has indicated that if it is raised so soon after treatment this is a sign the treatment hasn't worked at all and there may be no point in continuing with chemo. On the other hand, if her result is still low 6 months post chemo, it may be she is one of the lucky ones whose disease is not chemo resistant. Her family is keen for her to have more chemo if her CA125 is raised but she feels she can't face it. Can anyone else tell us what they have done at this point? She's been treated with caelyx because she was allergic to Taxol. I'm also interested to know if anyone has been prescribed Avastin either as part of a trial or regular treatment because we understood from the info at the Ovacome conference in June that it was only available in the States. Thank you.
six-month post chemo CA125 result. And Avastin.... - My Ovacome
Avastin is certainly available in UK. I was offered it on trial 2.5 years ago, and others on here are currently having it.
I'm a little confused by your report of your friend's advice. I was treated for 3c and my ca125 checked throughout chemo. It went down to 5 and has stayed there. Is there any particular reason that your friend's will not have done the same? I think the experience is that many do respond to chemo. I refused Taxol and was treated with carboplatin.
I hope your friend's result is low and she finds herself in full remission.
After diagnosis of Stage 3 OC in 2005 I had six sessions of Carbo/Taxol to reduce the tumour, then radical surgery followed up by three further chemo sessions. Shortly afterwards my oncologist told me that my CA 125 level was not as low as hoped so they would be keeping a very close eye on me with check-ups every 3 months. It was not until October 2008 that I needed 6 further carbo/taxol sessions and then after a further two years of good health I have recently just completed another 6 sessions of just carboplatin. Once again the tumours (enlarged lymph nodes) have reduced successfully and I feel fully back to health again. I know that the cancer will re-occur but for me the chemo works so I shall welcome it's use - and any other treatment I am advised to have - for as long as it keeps me going.
Maybe I am one of the lucky ones for whom treatment has so far been successful but I hope my experience may give your friend some reason to feel optimistic.
Patsy - I am 20 months into remission and my latest CT scan showed that I have 2 enlarged lymph nodes (2.5 and 3.5cms) so Onc has suggested further chemo, which I will start in Oct. She said I could wait a bit longer if I wanted so would be interested to know how large your lymph nodes were before you had further chemo? My CA125 has slowly been creeping up also. It's so confusing when the decision is left with me - do I wait a further 3 months until nodes are a lot larger? Were you given the same advice?
I cant be precise on the sizes of my enlarged lymph nodes - my Onc is very nice but not always the most communicative of men and I often have to push for details, which I then tend to forget! I think the largest one was 2.5cm by the time I had chemo again. However, in the preceding 18 months he said that while I was feeling well there was nothing to be gained by rushing into chemo too quickly as it is better to have as long a gap as possible between treatments so that one's body has more time to regain equilibrium and be better able to tolerate the drugs. I did feel absolutely fine and it was only once I began to have nasty little twinges in my upper abdomen that he said it was time to start chemo again.
Maybe you should speak to your Onc again and ask her what she thinks are the implications of waiting a bit longer - might the cancer spread for instance? - before you make a decision, although I think you can probably take some comfort from the fact that your CA125 is going up slowly and that your Onc seems to be taking a laid-back approach to things.
Sorry if this is a bit garbled. My brain's a bit fuzzy this morning!
Best of luck and do let me know what happens.
Thanks so much Isadora. I think the answer to your Q is that my friend is just absolutely terrified that after a stable CA125 she is not going to be lucky this time and it will have gone up. And if it's gone up 6 months post chemo it means there's no hope. She's been very tired (she doesn't know if this is normal after chemo or not - I suspect it is). She's just got terrible pre-result jitters and I want to find ways to reassure her that there is always hope. Thanks again for responding so quickly,
Yep; been there!
Firstly, there doesn't have to be this awful wait each time. I go to my GP to give blood the week before my appointment, and they tell me the reading the next day, so there is no longer any sitting expecting the worst, and it's totally unnecessary. After this time, tell her she could go to her GP and set up ca125 testing monthly, 2 monthly, or whatever she thinks will give her a bit of a break. I did this because the waiting for results can bring you so low. It is ABSOLUTELY normal to be totally knackered 6 months after chemo. I was anaemic for 18 months and ached all over too. It's hard to know what is chemo reaction and what is menopause (which is also renowned for extreme fatigue). See if you can get her to take control, organise her GP, get on here herself, and lift the burden of the wondering and worrying a bit.
There is so much more hope than you think when you wake up with this bloody disease!
Thank you so much for your wonderful replies..this help is invaluable. Isadora, I hadn't thought of the menopause angle, but of course she's been plunged into that too which could be a factor in the exhaustion. Thank you all for your responses. Cx
I get really angry that so little is made of the menopause for women who are plunged into it by surgery. This because the majority of surgeons and oncologists are male, and the female ones are usually well under the age of menopause. Frankly, until you've had an aggressive, surgery induced menopause, you have NO idea of all the bits of you that are thrown into chaos - and painful chaos - as a result. It's taken me 2+ years to feel nearly human again (and I still feel as if I have dementia as my memory is so bad). I have found the 'ladycare magnet' invaluable as a help for hot flushes, etc .
That added to the mayhem caused to your body by chemo.
I think its only the UK & Wales that avastin is not given I have asked my Onc on numurous occasions and she has said it wont suit me ? As you know there is a lot of bad side affects As I speak to a lady in Spain who reckons this is keeping her alive but her side affects are bad I have had 2 cycles of Carboplatin and one cycle of Taxol now I'm on Caelyx this has been going on for over 5 years so hoping this one does the job xxMarge xx
Caro, I get so angry when I read a post like yours where the Oncologist says there is no point in your friend carrying on with chemo - I thought a Dr's job was supposed to try and save lives ??
I was diagnosed in Sept 2006 with stage 111c ovarian cancer. Went through
de baulking surgery and started chemo on 6th Dec 2006. I have now constantly been on chemo ever since. I think I am now onto my 10th lot of chemo, although some I have had twice in the past, all received in Spain. In Jan 2009 I was given months to live by an Oncologist in the UK. But thankfully I am a Spanish resident so was taken from the Private sector into the State system and out on drug trials, Avastin/Cyclophosmide. These put my secondary lung and lymph node cancer into remission and has shrunk the liver/kidney/abdominal tumours by almost half. Unfortunately the cancer marker is now up so I have just completed my 4th session of Avastin/Carboplatin. I am a firm believer that drugs like Avastin are the way forward for some ovarian cancer patients.
Also as to the availability in the UK I can't comment on that, but I do know there have been trials running in various parts of the UK. I think the ICON 7 was in Newcastle and London, but forgive me if I am wrong on this as not living in the UK I don't know all the info.
At the Royal Marsden the one soon to start is Avastin/Ombraulin. Avastin disrupts the cancer cells blood supply. The new drug Ombrabulin is also a vascular disrupter but in this case it breaks down the walls of the blood vessels. The feeling is that the two drugs could complement each other, however there is a big question over the side-effects as both have the same pattern of side-effects particularly the most severe ones that relate to the heart and bowel. They don't know whether the risks will be doubled or not hence the phase 1 trial to look at toxicity and dose, and the extensive screening and monitoring.
When I worry about my future my Oncologist just looks at me and says 'there is plenty out there yet for you' What a different to approach to the one your poor friend received Caro. .
I wish her so much luck, but she must be firm with her Onc. and if he refuses more chemo she should seek a second opinion.
I'm been offered a trial at the moment for avastin in the UK, along with comparing other drugs but it's only for mucinous ovarian cancer. The lead investigator is Professor Gore at the Royal Marsden. If I go for standard NHS treatment then I've been told avastin is not availble (I'm in England). I know of someone who's wife gets it privately in the UK however who uses this site.
Surely there is the option of trying different combination of chemo drugs if the ones she's been having have not had the desired effect?
I can't comment really what happens in the UK re Avastin, but I have been lead to believe that you can apply to your local health authority for funding.
If you have been offered trials with the Avastin, go for it. It is keeping me alive. It for me has been my life saver as you can read by my post above.
I am curious to know how much a session of Avastin costs over there as I had to pay for 2 sessions here until I managed to get into the Spanish healthcare system.
Can I just slightly correct my dear and lovely friend Marjorie. The side effects from the Avastin are not bad, it is only mucus problems in the nose and also fatigue. The major side effects I was getting were from the daily chemo pill I took alongside the Avastin. I am now on Carboplatin with the Avastin and I am suffering badly with the combination. Avastin is not chemotherapy, it does not kill good and bad cells, it simply kills most of the blood supply to the tumour that is why is is such an easy treatment to tolerate. It is keeping me alive and the trial results here in Spain are good.
Problem with the trail is of course you are randomsied and have no choice so only 50% chance I will actually get the avastin! (I will be told which group I am in).
Hi I am looking for information for my sister who has kidney cancer papillary type 2, we have found a trail in America that combines Avastin/Tarceva which they are, if she passes the relevant criteria, willing to accept her on. However, that is a move away from her family - though we can visit, she will probably be on her own. We are trying to find out if we can get Avastin here in the UK - Tarceva is available. Does anyone know how we find out about getting Avastin? thank you
sorry realised I have answered a question by mistake - new to this site...will re post it
H i . Juliet here.I live in wales and i get avastin every 3 weeks. Idont pay for it but i know some people have to pay.My hospital is based in cardiff. It is a cancer hospital called velindre. They are soo lovely and i feel in very good hands. Hope this is useful.
Hi, I am also a patient in Velindre and am just curious as I read elsewhere on this site that Avastin wasn't available in Wales. Did you get it easily? I also find it a lovely hospital and the staff are great. Hope you don't mind me asking,
Love Kaz xx
Hi kaz . Juliet here . Nice to know somebody else who is been treated in Velindre . What stage of your journey r u at and have u been offered avastin. Where do u live . I am from magor .
Hi Juliet, I was diagnosed Dec 2012 with stage3c, I had four cycles of chemo then debulking surgery followed by three more cycles of chemo, finished chemo July then had scan which was clear, been told highly likely will recur at some point so having heard a lot about Avastin was just wondering about it, don't know much about it or when it's considered. How are you anyway, hope you're feeling ok. I'm from Treorchy in the Rhondda. Who's your oncologist in Velindre? Mine is Louise Hannah. Love Kaz xx
I have been 2 and half years since diagnosis . I had reoccurrence in July last year . Had carbo and gent . Finished at Christmas . Went on avastin then as a maintenance dose but my ca125 is rising . I have a scan on tues . Do u still have any treatment ? My oncologist is Emma Hudson x
No treatment at the moment, due for my first three month check up in November, it's scary when ca125 is rising, mine was 4,462 starting but down to 16 after finishing my treatment. Good luck with scan, probably get your results the week after, let me know how it goes. What stage are you ? Take care xx
Hi Juliet, thanks for letting me know. I can understand how scared you feel, its horrible. I'll be thinking of you tomorrow, really hope you have good news, please let me know when you can. All the very best for tomorrow, I'll be keeping my fingers crossed for you, try to have a good nights sleep if you can, Love Kaz xx
Hi kaz . Had my scan result . The lesion on my liver has grown and also some of the lymph glands . They have now stopped the avastin and to start on Caelyx in 2 weeks time . I know what I have 2 deal with so I just have to get on with it . I am still very scared that the more times u have chemo the less effective it is . Hope 2 speak soon . Take care . Love juliet x
Aww Juliet, I'm so sorry the news wasn't better,you must be gutted. So horrible that you've got to go through more chemo, no wonder you are scared. Take care, if ever you want to chat or are worried I'm here, can't do much but I can listen . Hope you've got family to help you through all this. Love Kaz xx