No treatment for stage 4 ovarian cancer

Hi Fernie.. Not sure I can give much advice but hope I can help a little.

Hi Lorna

Thank you so much for your reply.  It has made me feel so much better.  It is fantastic to hear you are five years along and doing so well and responding so well to carboplatin.  I have an appointment to see my oncologist next week.  I am terrified of chemo after he told me how high the risk is for brain haemorrhage or stroke.  My mother had a brain haemorrhage when I was a child and it is my biggest fear.  When I saw him last I asked if they had tested CA125, which they had not.  I requested one which has come back 302.  They wont give me a hysterectomy because my secondary has spread so far.  My blood plates has been this low for the  past five years, sometimes as low as 47 and I have never had any help to raise these and there was no mention of help with them now.

Lorna have you experienced much pain with your lymph nodes?  Because I have masses in my pelvis, abdomen, lower back and neck I have terrible pain where the masses are pressing on other areas.  Lorna how long was it from diagnoses of OC in lymph nodes to starting carboplatin?

I really can't thank you enough for taking the time to respond to me and for sharing your experience.

Thank you Lorna xx

Hi Fernie 

I  think you definitely be getting a lot more help, both with advice from a 2nd opinion; definitely more pain relief AND advice about the potential for stroke 

I recurred less than 6 months from front line chemo  (told it was back on January 25th - my hubby's birthday).

It's in my abdomen, lesser omentum and I have malignant ascites plus small blood clots on the aorta leading to both lungs, plus bowel issues. I was put on daily steroids   daily morphine tarts daily laxatives daily omeprazole and daily anti nausea plus given oramorph for breakthrough pain.and daily injections for the blood clots

I found out I'd had a stroke on March 5th - real shock to me but luckily I was left with no side effects.  The stroke doctor said that ovarian cancer can cause sticky blood and advised that I needed 24hour protection and token me off the injections and put me on twice daily Eliquis tablets. 

Unfortunately I became more unwell 2 weeks ago and my speech    became slurred . To cut a long story short I was in hospital for 5 days and had a repeat MRI which showed another plus 20 strokes! I'm now back on twice daily injections plus a daily tablet Clopidogrel. 

My Oncologist and stroke Doctor have therefore got me on the max protection and I hope to be able to have more chemo as I'd had 2 weekly Taxol before my strokes. No one can tell for sure whether the strokes were caused by rhe cancer itself or by tbe chemo

My CA125 was 5800 at recurrence and 4200 after the 1st chemo so we hope I can take another chemo and hopefully reduce both the cancer and stroke risk.

So you need pain relief, a referral to a MacMillan nurse, macmillan referral to help you fill your application for non-member tested personal independence payment, and I'd advise a second opinion.

You see not being looked after well enough in my opinion. 

I am happy to give you more info 

Please take action

Hi Clare

Thank you so much for your reply.  I am so sorry to hear you have been through so much.   I had no idea that oc can make the blood sticky.  Clare you come across as strong, you are a tonic and inspiration.

I have a palliative care nurse who has given me laxative (which has not worked) and she contacts me about once a month.  I applied for PIP when I was first diagnosed and I am now in receipt of it.  I have been given morphine patches which I have been reluctant to use as the times I have no pain I am relieved just to be me for a while.  Have you used these patches?  Any idea what they are like?  

So far I have had two reply's to my post both of you saying about a second opinion which I am going to request.  Both replys have given me more information than I have received since I was diagnosed and both reply's have treated me with 'you deserve more'.  

Thank you for taking the time to write to me and share your experiences.  I am seeing my oncologist next week and will ask then for a second opinion.  

Many thanks Fernie

Dear Fernie,

4 years ago I was diagnosed with stage 4 Overian Cancer which had spread to my tummy and heart. The NHS put me straight in to palliative care and the news was not great.

Not to be beaten, I went privately at the LOC Harley Street and meet a fab oncologist namely Dr Sleveen and he told me my cancer could be treated and it was! 

I had Carboplatin and Taxol weekly and on the 3rd week Avastin was added. I had 10 weeks of chemo than a radical Hysterectomy, appendix and lining of my stomach taken out. Than went on to have another 11 weeks of chemo than a year of Avastin.

I would 101% get a second opinion - actual I would not stop until someone could help me.

Wishing you all the best and keep fighting. Nickie xxx

Hi,

I had BC myself but at the same time my oldest friend was diagnosed with Ovarian cancer. Stage 4, , several in her family had this but she hasn't got the gene shes been told. She had operation it has spread to her bowel and lungs, both cleared, full hysterectomy.  However 2 years later she is fine and feeling and looking well,. Her type of cancer does not react well to chemo so she didn't have it. She is on a hormonal drug, which yes has side effects but shes managing those and carrys on her daily life well, She has to have 3 monthly check ups but her numbers remain stable.  Ok she knows there is a chance of reoccurrence but then there is with most of us who have had cancer.  Hers is a rare kind she was told, her oncologist only has about 4 paitents he told her with that kind, but all Stage 4 and all surviving.  Honestly till she told me recently I didn't realise hers was Stage 4.   So don't give up hope and as others on here saying ask for second opinion.  Really don't think you re being dealt with properly.  June

OMG you must feel terrible...

Get second opinion is the first step.

Check out all trials where no chemo options are used. Immunotherapy for example. 

And lastly there's clinic in Harley street that uses standard drugs to fight cancers called Care Oncology Clinic. You can read some articles about them

I wish you find the solution 

Hi Fernie

My mum was diagnosed with stage 3c ovarian cancer in January 2013. She had surgery to remove her ovaries and they found it was all over her abdominal cavity and couldn't be removed. She had a course of taxol and carboplatin with avastin and was told she was in remission. Within a few months it was back - they basically told her there was nothing that could be done so she got a referral to the Royal Marsden where they have an incredible ovarian cancer team. She was on course for a trial but further testing revealed the ovarian cancer was secondary and actually she had an advanced rare stomach cancer. They told her that they wouldn't have given her the surgery if they'd known as it was so advanced and she'd already survived much longer than she should have done. She did have more chemo and was able to go on a round the world trip but sadly in Australia she was hospitalised. She managed to get home, spent a month in a hospice and then sadly passed away. 

If your current oncologist doesn't feel he can do anything, he needs to refer you to a specialist. I would definitely recommend the Royal Marsden, they are trialling many new treatments. 

I personally have been on the patches you're talking about - they're extremely effective and give an excellent consistent level of pain relief at a much lower dose than oramorph. If you wait until the pain is bad you need a much higher dose to get on top of it. I'd definitely recommend you use them

X

Hi there

Did your Mum get the mistletoe therapy in the end?

Hi Fernie, I have refractive, platinum resistant ovarian cancer (it continued to grow during chemo and post radical surgery). Surgery was Aug 2015 and I finished chemotherapy Feb 2016. I suffered a heart-attack October 2016. I started using off-label drugs via Care Oncology Clinic and so far have been managing without needing further chemotherapy - although the off-label (repurposed) drugs study I'm on is recommended to have best results when used alongside chemotherapy. I'm aware that my current oncologist isn't a fan of the study for various reasons I belong to a couple of Facebook groups (Jane McLelland Off-Label Drugs and Ovarian Cancer UK)

The main reason for responding though was to enquire how you are doing and if there was any update on your treatment options?

Kr- Jan