Unwelcome news from my Oncologist today

[TarbonNZ]

Hello everyone. Well I finished second line treatment 5 weeks ago, and went for a follow up with my Oncologist today. While I have responded well to my latest round of treatment, and my CA125 had reduced right down, I was told that my cancer is not curable, and that it will come back., it just depends when. I was told that there was only ever a slim chance that first line treatment would be successful because of the advanced rate. I was initially diagnosed stage 3c high grade serous, I have not asked what I am now.. Needless to say it was a shock to hear the news. I have great trust in my Oncologist, he is not the sort of person who says these things just for the sake of it. He is extremely kind and empathic, but said we need to deal with the reality of the situation. We did talk through options etc, but this post is just to see who has been in the same situation and how long you were able to go between having to look at other treatment options. Thanks Therese

[Hidden]

I assume your oncologist is also a psychic, cos unless he is I don't see how he knows what is going on in your body, you say you have "responded well to treatment and your CA125 has reduced right down" what was the number? We can be diagnosed with the same OC stage and grade and yet we are all different and will respond to treatment differently, it seems you have great respect for your oncologist and I am sure he is a nice person but it doesn't make him right, have you considered a second opinion? Stay positive it really does help. Good Luck xx

[Lindaura]

Dear Therese,

That certainly seems like a cold slap in the face, after you responded so well to both treatment regimens.

That being said, how was your CT scan? Did it somehow reveal new spread?

I am 3C high grade serous also, and I know our cancer is not “curable” but it can be kept at bay, often forever.

If you responded well to second line, it is time to go on one of the new PARP Inhibitors.

In Britain, it will be Niraparib , but I have heard that this or Olaparib are also available in the USA.

Insist on this now or try to get on a trial where a PARP Inhibitor is offered. Not a double blind or randomised trial, but a trial testing the efficacy of the different new PARPS.

So sorry you are on this rollercoaster. I am, too, currently on Carbo/Caelyx - in the middle of my first recurrence, doing great and planning to go on Niraparib in March.

So, all I can do is wish you all the best. Loads of the ladies have been riding the rollercoaster for years and years, others have been NED for many years, and some of us haven’t made it.

I just decided that I am going to prevail and you will, too.

Hugs,

Laura

[delia2 in reply to Lindaura]

Laura. How are the side effects of Carbo/ Caelex as opposed to Carbo/ Taxol? Just wondering since I have pretty hard hit by carbo/taxol first line (mainly bedridden with fatigue, dizziness, etc. days 6-10. Thanks.

[Lindaura in reply to delia2]

Me, too, Delia,

I was totally debilitated by Carbo/Taxol. First week with nausea, then with Bone Pain, terrible Chemo fog, totally dizzy and exhausted from the slightest exertion and that all lasted until my last infusion.

Plus, everything tasted awful, so eating was a constant issue.

So. CARBO/CAELYX:

Nausea only on the first 3 days. Given Emend, thank goodness, before infusion and 3 days after.

I combine that with Ondansetron, Docusate for constipation, omeprazole and Cyclazine, but i am pretty much Okay digestion wise after that, but very weak and fatigued for first 6 days. The 7th day is a turning point and after that I get stronger and stronger and start living like a normal person by the end of the second week.

My tastebuds are normal and by the second week I am ravenous!

There is no brain fog, so I can drive a car! No dizziness, so I can take a shower!

AND I have not lost one hair on my head!

Even better, my Ca-125 dropped my near 200 points at the end of the first month.

I will be seeing my Oncologist next Friday to see how that’s going after this second infusion.

My third is Christmas Eve, with a scan 10 days later!

I have heard about problems with mouth sores and hand and foot skin problems and I am taking precautions for these and the Chemo Suite prescribed moisture lotion and mouth wash already.

But, try to get your Onc to prescribe the Emend. It is a godsend.

I love that my hair is growing longer and longer and that I feel as if this regimen is working.

Hope this helps,

Laura

[delia2 in reply to Lindaura]

Thank you-that sounds encouraging and I am glad you are managing so well on it! Happy holidays!

[Lyndy]

Sorry you have been faced with this but I think it is generally accepted that if it returns once it probably will again. However- they cannot predict when and how well you will recover going forward. Some oncologists talk about managing OC as a long term condition. I find this much more acceptable as a description rather than ‘incurable ‘ which sounds dire!

xx

[delia2]

I am 3B and I was told basically the same--that after first line about 15-20% will be "cured"--ie the cancer will not recur. The other 80% will hopefully go into remission but the cancer will come back and then you just treat it on an ongoing basis. For some it can become a "chronic disease." There are so many different options for treatment.

[Katmal-UK]

Hi Theresa. I was told from the outset that my cancer could not be cured but treated. I was given a timeframe of a couple of years and my CNS said it will come back and it will shorten your life. That was in 2007. Still here despite two recurrences, currently on third trial drug, NED with CA125 of below 3. I was told they treat OC as a critical illness. Well I feel good, work 4 days a week and enjoy the here and now xx Kathy xx

[RonLitBer]

Responding well is really good, but as has been stated the nature of the disease is such that it often returns and once that happens it is typically treated as a chronic disease. This is connected to the fact that it is for the most part diagnosed at a later stage. One of the big hurdles with ovarian cancer is that it does not have a high degree of mutations. This means that our immune system is not able to "see" the tumours and it appears more like "self" so the immune system will not attack something that is not viewed as a foreign entity. This is a safety mechanism to prevent autoimmune diseases. It works to benefit cancer tumours. Ovarian cancer, in part because it has a low mutational burden, seems to respond better to combination treatments (perhaps a PARP and a PD-1). While PARP inhibitors may be an option for you (especially if you are BRCA+ or your tumour is "BRCAlike") ideally I think it would be better to see if you can find something beyond a single agent; some kind of combination therapy. I think this is primarily accessed through clinical trials. I would also ask if you have been tested for germline gene mutations. How many and which mutations were tested for? There is a list of gene mutations besides BRCA 1&2 that is now being tested for routinely where I reside for everyone who has ovarian cancer. As well, has your actual tumour been tested? What were the results? The information you get from testing may not necessarily be actionable but it might provide useful information that is. You might want to ask about clinical trials although if you are still platinum sensitive I find that is the preferred agent.

[January-2016-UK]

I think current knowledge indicates that if you recur once you are very likely to recur again. What isn't really known is the interval between each recurrence and also you need to consider exactly where in your body the recurrence occurs. Some spots in the body are more problematical than others.

I am Stage 3C, ovarian carcinosarcoma and recurred first time within three months. So I have known I am not curable for two-and-a-half years. I did have hopes of course after my first line treatment that I might be one of the lucky ones but statistically, I knew it was unlikely. Having said that, diabetes isn't currently curable either but it is manageable.

So I hope for the best with long intervals between recurrences but it doesn't surprise me when I do recur.

All the best!

Helen

[TarbonNZ]

Thank you everyone for your informative and kind comments, I appreciate it. I live in NZ and unfortunately it is very third world when it comes to treatments available for cancer, particularly ovarian, We have all of the standard chemos, but when it comes to the latest drugs unless you have the BRCA gene the only way to access is to buy them.e.g. Avastin is not available free, nor is Olaparhib. My Oncologist told me that it will be treated for me as a chronic disease, and it will just be a matter of me building my strength and health back up again (post Carbo/gem), so I am in the best possible health to deal with a recurrence when it comes. He will monitor trials coming up for me, however there is not much available currently. I am still platinum sensitive, just need to get through the next 6 months so it is still an option to use. There is also the option of a referral to a private cancer centre for treatment where they have all of the latest drugs, if I am in a position to pay. We have put some funds aside from the sale of our house, but I need to be confident that I will not be throwing money away, e.g. I have been told that Avastin will give me minimum assistance, and while Olaparhib is having great success with patients who have the BRCA gene, it is minimal for others. At $8,000 per month you need to have a little more assurance than that. Avastin is $5000 per month. This cost is just for the drug, you still have to pay $600 ave per treatment for the actual infusion. Thee are still various treatment options for me, and like all of you I just have to wait for that wonder drug.

P.S. In reply to some questions: My CA125 has dropped down to 10. We do not have regular CT scans, they are only done on basis of symptoms. I have had two over the last few months, and they showed stranding. When I had my op last year, they could not remove all of the cancer due to size. I had extensive small nodules on my right diphragm which had to be left. I have only been tested for the BRCA gene. Kind Regards Therese xxx

[scraggs]

Its so shocking to hear the words incurable.Try not to let it takeover as none of us get out of here alive. lol One in seventyfive women get ovarian cancer and people get all kinds of health issues .Nobody on the earth is safe.People defy the odds all the time.Live your life as best you can. I ts unfortunate they don t do regular scans as many with this disease do not exhibit symptoms. I had increased girth and nausea and after my surgery I felt great with no nausea at all.Its been four months since my debulking surgery and I was a low grade but the nausea is back .Can it return that fast. God only knows .Im not doing anything about until after Christmas.Its always sad though when not the greatest news knocks on the door. I hope you can have a great time at Christmas.

[IrishMollyO]

Hi there

I just want to reassure you as the others have done so already. I was diagnosed with stage 3 c high grade serous Primary Peritoneal cancer a rarer form of OC in 2011. I was inoperable but responded really well to Carbo / TaxoI. I remained

N E D for nearly five years when it returned in my lymph nodes in 2016. I was treated with Carbo only this time. Had unrelated Breast cancer a year ago this month. Mastectomy and Radiation followed. Recent scan showed recurrence in my lymph nodes again. Watching and waiting for five months now and will have more treatment early in the New Year.

One very good bit of advice I got along the way was look at this disease as a chronic disease such as diabetes . The thing about OC is its usually diagnosed at stage 3 or 4 which is generally too late to get a complete cure. However lots of women defy those odds and are still around years later. If your oncologist is good he will be ready with more treatment that suits your particular needs . There's also the fact that new drugs are being trialled all the time. I don't think Parp inhibitors or immunotherapy was around when I was first diagnosed. Enjoy your NED status now and I wish for you that it's a long one. Live in the moment and enjoy your Christmas. Take care

X X X

💚💕

[coksd]

Would you consider the oncofocus test its a private test that uses targeted therapy that maybe worth discussing and looking into, I went public a year ago in ireland and while I was offered the best frontline treatment it didn't cure me I got a few extra months on avastin and then I had recurrence I was offered two drugs at my public hospital that only offered an 18% chance of working i went for a second opinion and got offered cisplatin after been deemed platinum resistant by one oncologist and platinum sensitive by my new oncologist so I am have way through that and my ca 125s are reducing since I started it and the next plan is orlaparib I also had my original biopsy tested for its PDL1 status mine is high which means it may respond well to immunotherapy.

[TarbonNZ in reply to coksd]

I’m not familiar with that test, but thanks for the information. I will mention to my Oncology nurse when he comes tomorrow. I will also Ask about PDL1.I am not sure what other testing of the tumour they did, (apart from the standard analysis), so would be good to know. Thanks again, Therese

[RonLitBer in reply to TarbonNZ]

To test for PD-L1 a tumour sample needs to be tested. There is no blood test for it. There should be tumour tissue from your original debulking or a biopsy will need to be done as mentioned by coksd above. The problem is that after treatment tumours change so your tumour may be different now and a biopsy only takes a small part of a tumour so may not be reflective of the whole tumour, but these are the methods used. It would be good to get your tumour tested however because it could be "BRCAlike" which means that even though you do not have a germline BRCA mutation (which can be passed on to offspring) you have a somatic one (only residing in your tumour and not passed on to offspring). Having a somatic BRCAlike mutation in your tumour indicates that you will possibly do better on PARP inhibitors than someone who does not have a BRCAlike tumour (but probably not as well as someone who has a germline BRCA mutation). I would also mention that where I live they are now testing for 18 germline mutations in addition to BRCA 1 and 2 as they have found more mutations that can contribute to cancer. If you have a high PD-L1 count then you would do better on a PD-1 immunotherapy drug like pembrolizumab (Keytruda) (or some other PD-1/PD-L1 drugs). That is because the PD-L1 is responding to PD-1 from your T-cells that are inside your tumour trying to destroy it. The PD-L1 essentially makes the T-cells ineffective. By blocking PD-1 or PD-L1 the T-cells can get back to killing cancer cells. It is a bit tricky though because there are instances where even people showing high PD-L1 don't respond to PD-1/PD-L1 drugs and people without PD-L1 do respond. They are now testing a PD-1 with a PARP combination but I think it is in Australia (in terms of geographic proximity to you).

[TarbonNZ in reply to RonLitBer]

Can’t believe your level of knowledge. Do you have a medical background, or just extensive research?

[RonLitBer in reply to TarbonNZ]

A very frightened patient who feels less out of control with information.