I recently joined, glad to have found you all. Ovarian cancer is a strange cancer that seems to make many feel very stressed and lonely so definitely to give each other mutual support is so important.
I was diagnosed with stage 4 high grade serous ovarian cancer last March 2018, after being admitted to hospital in February with severe breathing problems. I was 3 weeks in hospital to have fluid drained and having tests done. I then started with chemo Paclitaxel/Carboplatyn in April - 6 cycles. Subsequently surgery was suggested but as the surgeon wanted to take quite a lot out (unnecessarily) and particularly the rectum which would have left me with a permanent stoma I tried to find a second opinion or a referral. Particularly I was interested in the use of plasma jet to avoid having to end with a stoma. That was quite a tortuous process which started in September and by November I asked my hospital for a CT scan as I was worried the cancer was still there - even though the CT scan from August showed a stable disease. I only got the CT scan in February 2019, and the referral/second opinions were refused - long story. So the February CT scan showed a cyst in the tumor and the tumor grown from 4 to 10 cm. The secondary tumors in the peritoneum had also grown.
So my second chemo started in February, Caelix/Carboplatyn (6 cycles) and I was told that there was no surgery anymore. The letter I received from the oncologist also stated that this chemo was to manage the disease not to cure it!!
This is my second cancer, the first one is multiple myeloma, a blood cancer. I was diagnosed in 2008 and after 3 different chemos and having run out of options, I used high dose curcumin since 2011 that has kept me stable. The case was written up by my consultant and published in the British Medical Journal in 2017. Following that, there was a lot of publicity so I wrote an article to be able to pass on my experience to others.
I am still controlling the multiple myeloma through the curcumin, but it seems that curcumin alone does not protect you against getting cancer or controlling cancer of the ovaries. It seems that a tumor probably requires too much curcumin, so it needs something else as well to help to bring the tumor down.
There are very few patients with multiple myeloma, but the medical team and special organisations are second to none. So it was a bit of a shock for me to get into this new harsh world of ovarian cancer. As in my case nothing is as with other patients, like my white blood cells are mostly low before a chemo starts, the oncology team has had difficulty in knowing how to deal with me. So I end up battling most of the time. It now seems they are getting used to me, although my last chemo I had to wait quite a long time as there was 'No Chair' !!!!!
Still I have great support from my 'carer', friends, my GP and even my hematologist. I am looking forward to sharing experiences with all of you and learn from and support each other. I have a good quality of life, now I am not breathless anymore and so far I am tolerating the chemos quite well with minor side effects.
Dieneke
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dieneke
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HI Dieneke, welcome to the forum. Sow u have been thru a lot and now this!. Im stage 3 high grade, diagnosed Oct 2007, still here despite 2 recurrences. If I can help at all please feel free to ask anything. Chances are if I cant answer then one of the lovely ladies here prob can. Big hug xx Kathy xx
Thank you for that. It was good to read your story! Wow, a 12 year survivor! I am/was really interested in the survivors stories and also whether there is anything I can learn from them. What would you say makes you survive for so
Hi, honestly have no idea apart from I believe its in my genes. Dad had lung cancer at aged 49, died 81, 2 weeks short of 82, mum had OC at 55 died at 72 despite a prognosis of less than 5. My prognsis was 2 years but here I am in my 12th year. Live life, dont regret what you didnt do. xx Kathy xx
Welcome. I only joined the group a few months ago having gone through first line chemo/debulking for high grade serous grade 4 (not braca) diagnosed in Oct 2017. Had l found it sooner l would have had more support from ladies who understood this cancer! So very glad you found this site early on.
You are obviously a challenge to the medics, but that is good and l love how positive you are and strong willed also.
As Kathy says there will always be ladies to answer your questions, so reach out when you need to. Its important to stay informed and so good to read you have support for this journey as that is important.
I personally found it invaluable to keep a chemo diary and soon realised there was a pattern to how l felt (l was on weekly carbo/taxel on front line). This helped me plan days out etc.
Good luck and stay in touch especially if you have any worries and good news always welcome.
Thanks for the tip. A chemo diary seems like a good idea. With all the things that have happened to me so far I have always been saying that one day I will write it up, but I don't except for some notes, and then of course one forgets.
Where are you located? I am in Bath, in the UK, and feel pretty fortunate with my care here at my local NHS Hospital.
I was completely ignorant of Ovarian Cancer when this started, but quickly self educated with lots of research, the MacMillan Foundation, and Ovacome.
I am BRCA 1 positive. Have you been tested for this mutation? It helps with your treatment to know this.
I also take Curcumin everyday, but I will check up to see if I should increase my dosage.
I have just finished Carbo/Caelyx for my first recurrence and am about to begin a PARP inhibitor mainly designed for BRCA positive mutations, and I am hopeful and curious about the outcome of this.
Your blood cancer may affect the choices in your treatment, but I hope you OC team will address all your concerns and if not, I hope you can find a second opinion that will be more comprehensive.
Thanks for that. Good you are in Bath. It is one of the hospitals I read about as I seem to remember they have a plasma jet. Lucky you!
I was also BRCA tested but never got the results back - I presume I was not BRCA positive.
Good you are taking curcumin. I am taking 8 grammes a day in pill form at night away from food and not too close to bed time. For cancer of the ovaries they did a laboratory tests where they recreated the curcumin artificially and tested it. They found that it helps lower tumors and reduces any side effects. Now I don't remember the quantity. The 8 grammes is based on a clinical trial for multiple myeloma which was done by the Anderson Institute in the US. Margaret from Margaret's corner was involved in that and she is the curcumin guru so to say.
And yes once I know more after the 6 cycles of I am definitely planning to go for a second opinion for surgery.
I was diagnosed with ovarian cancer in 2008, am on my 5th recurrence, & have known for quite a long time now that my disease was incurable. In fact I was asked by a dr to sign a form in 2013 saying I realised all treatment now was palliative not curable. But I am still here, glad to be alive, currently feeling quite well, & making a few plans for the next few months. For the past 18 months I have been taking hormone blocker tablets to control the cancer, though they are not suitable for everyone's cancer, only those which are hormone responsive.
I don't know whether a second opinion could still be possible for you at some point? I had some surgery at the beginning of 2017 when one of the oncologists got me a second opinion after the surgeons at my usual hospital said no.
You definitely are a long term survivor.. and so rude of this dr to make you sign a form re it being palliative. I can't believe it that they are so rude and insensitive. My hematology team for my multiple myeloma would never ever have said that. And I am also stage 4 for multiple myeloma. What is wrong with them?
Yes I definitely will go for a second opinion at some point for surgery... just biding my time.
By palliative he meant that the chemo I was having would n't effect a permanent cure, as I needed to understand that my cancer was incurable. I knew it didn't mean I was coming to the end of my life - after all, I'm still here. Actually, although it sounds insensitive, I think he's actually a very nice man, & always gives the impression of having time to sit back & explain things. Di
Maybe it is just the language they are taught to use. Because palliative normally is used in terms of 'nothing can be done about it anymore'. Glad to hear he is a nice person and explains things. Dieneke
I too have signed this form before starting second line treatment. One positive thing it did for me was push me towards looking at alternative ways to manage this disease. Otherwise I think it’s unnecessarily cruel. Why should they not still be aiming for long term remission and write that on the form instead?
I absolutely agree. Something that this sector is taught when specialising in cancer of the ovaries. This definitely would never happen in the blood cancer/ hematology section, multiple myeloma.
And yes they might be very good hearted and nice but maybe they should be told that what they say is not right!!
Welcome to the group, we are all fascinating individuals brought together by this bloody disease.
I was diagnosed withOC in 2017, even though I had a right lung full of fluid, tumours along my diaphragm, a foot of my bowel removed and debulking surgery I was told they managed to get all the tumours and my outlook was very good. 6 cycles of Paclotixel/Carbo left me feeling weak and crap but positive as they stated it was to mop up any rogue cells. Coming up for a year in remission I began to feel unwell, my Ca125 doubled and a CT scan showed tumours in my spleen. Back on chemo Carbo/Caelyx, now classed as incurable. Got scan on 30th to see if shrinking the tumours, presumably with a view to change chemo if it has not.
With OC you live your life and hope you can just keep going. Positivity helps but you always have ‘down’ days when silly little things get to you. Next day you put your big girl pants back on and start again. If you have any questions please do not hesitate to ask. We all help each other.
Sending you lots of love 💕 hugs 🤗 and positive thoughts xxx
Thanks for sharing your story. I am sorry your tumor has come back. As in my case just ignore the 'classed as incurable'. Very rude and even if it were true they shouldn't say so.
I also compare with my multiple myeloma journey and there are some chemos that work and others don't. Unfortunately that hasn't got through to the Ovarian Cancer teams as they are so set in what works and doesn't work and if it doesn't work then you are incurable. They should ban the word 'incurable' and look at things more positively.
All the best and my positive thoughts to you too. Dieneke xx
I don’t know what they have - so best to check the article. It needs to have bioperin ie pepper for absorption and there are three ingredients in the curcumin that do the job - and are anti inflammatory. They are also in the article. They are not cheap but until a clinical trial has been done they won’t be available on the nhs.as no pharmaceuticals are involved a clinical trial is highly unlikely. To only have my case is not enough. So really tricky.
Sorry to hear your woes. It certainly is a lonely place and It certainly is a roller coaster disease. I was diagnosed last June with OC 4b high grade serious. Carboplatin and paclitaxol chemo told l.p. in Sep then it was Nov then Jan but two days before Christmas told inoperable. Taken off chemo as not reducing it any more and put on Avastin and so far that has stopped it getting worse but so tired. I really wish you all the best and feel for you controlling the myeloma at the same time. Fight it girl and you are not alone on this f o rum. There is a lot of support.
I would like to look into the curcumin. I had taken turmeric for several years for tennis elbow when I was diagnosed so it certainly didn’t stop the cancer but there is no doubt it helped the tennis elbow. I was only taking one capsule per day. I am on a clinical trial and will ask if I am allowed it. I didn’t know you could be refused a second opinion. Have you considered a private consultation? I paid £350.00 for mine and was put on the clinical trial- back on nhs.
Good to hear the curcumin helped for the tennis elbow. You can find more details here in this link which is my personal experience. Lots of links, maybe Margaret's Corner is a good start. hiddenart.co.uk/2017/11/28/...
If you are on a clinical trial I don't think that they will allow you to take curcumin. I just told the OC team that I continue to take curcumin as otherwise my multiple myeloma comes, back so I have no options.
And yes a friend of mine suggested a private consultation and they then refer you back to the NHS. Another friend of mine dissuaded me. In the end I think it was right not to go down that route. The second opinion was for Royal Marsden and they have private and NHS patients. They seem to be rather overwhelmed so don't take that many NHS patients, less so someone who is 68 and has two cancers.... There is also a very strong link between the Royal Marsden and Barts, with surgeons being trained at Barts .... so lesson learned and I have to find a hospital that is not that closely linked to Barts but still has what I am looking for... the plasma jet... and a more open approach.
Don’t know if it is any good for us but have been watching the new proton beam building going up next to UCLH when I go for my appointments. The main structure looks near completion.
I, along with other ladies I'm sure, are so interested in other treatments such as plasma jet and proton beam - please keep us updated on your investigations into these types of treatment. Dieneke, myself and others have gone for a second opinion with the lovely professor F at Hammersmith. I had 2nd surgery with her that went so well when my own top rank cancer hospital refused. This was now 15 months ago and I'm still NED. Best wishes. Gwen x
Welcome, Dieneke. I've read your story too and it appears you've already had a lot to deal with. Hats off to you.
When I was first introduced to the concept and risks of exploratory & debulking surgery, and the likelihood of a stoma, I said you can't be serious. And insisted they wake me up mid surgery to let me make a decision on what would be taken out. A credit to the on-duty oncologist that he didn't laugh in my face but remained calm and patient, until I signed on the dotted line.
If not for the unlikely bit of luck of most of my tumours being borderline / non-invasive in nature the first time around and just getting scraped off my organs and bowels, a stoma would have been a certainty.
Not a fun prospect. That said, I have since heard from quite a few ladies who manage theirs quite well, and I would take my chances again. All in all, I was told surgery could play quite a significant part in my treatment whenever it's feasible, and would be my go-to treatment even at recurrence (probably due to my borderline / low grade serous type of tumours, which might not take as well to chemo) . But then again, I have since heard from ladies who do quite well without surgery.
Wish you the best of luck and hope you can get a second opinion after all. If Christina F isn't available, what about contacting Sloan Kettering or MD Anderson over in the US, for a private consultation? All the best. Maus
Thank you for sharing your experience. What I objected to was the fact that when I saw the head surgeon, initially he sort of said that I probably was not eligible for an operation. Then he started saying that it would be a very difficult operation and they wouldn't know as yet what would be taken out. I then to counter the fact that he said I wasn't fit I said yes to it all, but didn't sign anything. My carer was not with me - as we thought it would not be needed. Then when I phoned my carer after the meeting, I started to panic particularly as - equally as you said - I didn't want to wake up from the operation to find out that there are some organs I wouldn't have any more. So when I went to hospital to see the nurse for last arrangements before the operation I told her I was unhappy and my clinical specialist nurse then arranged for me to see the head surgeon again. My carer came and he explained step by step why I might end up with a stoma - the tumor being too close to the rectum. I then asked for more time to think about it and started investigating. I read that there is a school of surgery that prefers to take as much as possible out, even if not needed, to stop any cancer from coming back. I also read about other types of surgery and the plasma jet and I asked for all my CT scans. I was offered to be opened up and if the tumor couldn't be taken out without the rectum to be closed again. I also refused that and told the surgeon I would be looking for a second opinion. He gave me names and said he knew all of them, as they had trained with him!!
Anyway in the end it was gut instinct and I wasn't happy with him doing the surgery. He might be very good but I didn't agree with the approach of taking it all out..., And yes surgery can help stop the cancer coming back. However it looks as though the profession still doesn't know exactly what can stop a cancer from coming back.
With my multiple myeloma they tried to harvest stem cells for a stem cell transplant but couldn't harvest enough, so in the end they gave up. Stem cell transplants as well give you a bit of breathing space but often the cancer comes back.
Anyway, hopefully there will be new research and there are more treatments.
More research wouldn't hurt I'd think. My surgery took place in Germany and they take quite a radical approach, or so I've been told. In the end, I was fine with it.
My worry is that the research progresses slower than our disease ;/.
But for now, I hope you will receive a proper second opinion, and choose a treatment path which sort of feels right for you.
Thank you Maus.. yes research always takes its time. But when I was diagnosed with multiple myeloma in 2008 quite a few treatments started to be approved and the Barts Department for hematology was also very much into clinical trials, although I never needed one.
We have to find a progressive hospital with trials and who actually use innovative techniques that are already approved, such as the Plasma Jet...
Hi, my Dr is excellent, never gives up on her patients, her name is Dr Amy Hakim, she's I'm Palm Springs, CA,USA,. I was diagnosed in 2014, and 5 yrs later cancer free. Stage 3c, clear cell ovarian cancer. My friend is stage 4, but doc shrunk her tumors, then operated on her. She's doing chemo again. My Dr, will work with someone as long as there willing to fight. In case your interested in another opinion. Best wishes ❤❤Liz
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