Avastin no longer working, next steps?

[RobM]

Mum's oncologist has confirmed that Avastin is no longer working for her. Mum completed her first line treatment in March 2012 but recurrence was confirmed in August 2012 so she went onto Topotecan (plus Avastin) as her cancer was most likely platinum resistant.

When Mum's chemo finished in late Jan 2013 we got approval to continue with Avastin but we have come to the end of this option now as her CA125 is up around 2,000.

What other treatments have been offered at this stage and does anyone have experience of platinum re-sensitisation? All ideas and comments welcome. Thank you.

[Hidden]

I was sorry to hear your news. I wonder why the oncologist thought your Mum's disease may be resistant? Is it low grade? x

[RobM in reply to Hidden]

Unfortunately Mum's cancer is high grade but because the cancer returned so quickly (after about 4 months) the oncologist feels that platinum based chemotherapy would not achieve a positive outcome.

[Hidden]

There are several chemo regimens available other than Avastin (which is not widely available). The one I would ask the oncologist to explain is the Rotterdam regimen. This chemo is reputed to be one of the best available and can be used with platinum resistant circumstances which baffles me as it uses Cisplatin, a platinum based drug. We are on 5th line now. Rgds Paul

[RobM in reply to Hidden]

Mum's oncologist has told us we still have options and will discuss them following an updated CT scan. The stats from the Rotterdam Regime show good response rates which very is positive but it looks a tough treatment.

I always felt that Avastin would only delay the next line of chemo but the longer it could keep Mum's cancer at bay the better for her.

[Whippit]

I'm really sorry to hear about your mum Rob. I think the term they use for this is refractory disease - i.e. one that recurs within six months of treatment.

It might be an idea to get a 2nd opinion. Everyone is entitled to this and it would be good to feel you've explored all avenues given that treatments seem to be different in the cancer centres and regions across the UK.

Your mum was fortunate to be able to have Avastin. My oncologist explained that trials had found it could be effective for Stage 3 ovarian cancer patients (sub-optimally debulked) or stage 4 patients and that there is an associated 6 month survival for some patients. It would be heartening to think back and assume the Avastin your Mum received did have a positive and beneficial effect for her for a period of time though at the moment I'd imagine it just seems so depressing.

A friend had a similar resistance to platinum-based chemotherapy and she looked into the Rotterdam Regime or the Van der Berg Regime. They're slightly different but are based on similar principles. You'd need to discuss with the oncologist your Mum's state of health and wellbeing as they can have quite considerable side-effects. It's worth doing a search for both these regimes on this site. Busy Lizzie did a very good comparison of the two.

I do hope you get some positive outcomes for your Mum. Yours is a difficult role - sometimes I think it's harder emotionally for our supporters than it is for us.

I wish your Mum all the best. Annie

[RobM in reply to Whippit]

Thank you for your reply. I do think the Avastin had a positive effect albeit for a limited period. Mum was diagnosed at Stage 4 and did respond well to first line chemo following de-bulking surgery. A 2nd opinion is one option that I will definitely look into if the discussion re next steps isn't as positive as I hope.

Just need to wait and see what the CT scan shows.

[Whippit in reply to RobM]

Good luck with it Rob. We're thinking of you and your Mum. x

[RobM in reply to Whippit]

Thank you very much.

[Hidden]

Just sending you my very best wishes and prayers for a better outcome love x G x

[RobM in reply to Hidden]

Thank you. Hopefully the next line of treatment will be the one.

[Hidden]

Little I can adhere but hug admiration Rob, your mum has a far better chance of getting the best path through this with a strong supporter by her side. I think sometimes the person with the beast recedes a a little, some of the fight goes out of even the feistiest of us when it's clear we are not the one in control of things any more. We need you. Give your mum my best wishes too.

Love

Sue xxx

[RobM in reply to Hidden]

Thank you for your response. When I heard the news I felt sad and disappointed but now I'm focussing on staying positive and doing all I can for Mum. I get nervous as Mum goes through each line of chemo as the chances of a good response decline but then with this disease the most effective form of treatment isn't always clear so you might find it on the 3rd or 4th attempt.

[MidwifeGill]

Hi Rob... I am following the same path as your mum... Indeed I am in a hospital bed as I write. I have had OC for 15 mths, and am on 3 rd cycle of chemo as when we stop it flares up within weeks. My last ca125 was 2500! Higher than at diagnosis.. But it is working as there are no tumours, just barnacles everywhere.. These are attacking my small bowel at the moment and I have been in sub acute partial obstruction for 7 weeks now.... Have to be patient... Surgery not an option! On steroids and to recommence taxol.. No plantines ATM ? Why ... So positive thoughts and stay strong x

[RobM in reply to MidwifeGill]

Thank you for your reply. Your situation sounds very similar to Mum as her CA125 is now higher than at diagnosis and previous scans make reference to "spots" as opposed to larger tumours. Also my Mum's cancer seems to respond well initially to chemo (first carbo/taxol then second topotecan) but seems to come back quickly thereafter. Not sure whether platinum based chemo is an option again but will discuss with oncologist.

I hope the taxol works for you and that your stay in hospital is not too much longer.

[Hidden in reply to RobM]

Hi Rob, my Sandra always responds well to treatment but always come back within the 3 month check up gap. Yet they still try platinum based regimens, currently on carboplatin/gemcitibine so they must think hers reacts to these when I would have thought she would be resistant. They must know what they are doing I suppose. God knows whats next in the pipeline as they said they were running out of options other than repeating old treatments. Rgds Paul

[RobM in reply to Hidden]

Mum is due back at the oncologist on April 25th (although her CT scan isn't until the 24th) so I will be asking plenty of questions. Mum also has severe groin and back pain and her CA125 is over 2,000. The sooner Mum can get a new treatment plan the better as I hate seeing her in pain.

I hope that carbo/gem chemo continues to give positive results and maybe there is a breakthrough coming in clinical trials.