clear cell is back

[Jingyu]

Hi I got a call from my doctor confirming my clear cell ovarian cancer is back while I am embracing my new life every day : actually she called me during a workshop I was attending in a hotel with my colleagues . I cried and cried in the toilet of the hotel : i feel so great but I just have to face the reality : it is back and I am platinum resistant, and I have few options now.

My cancer is TMB low, MSS so not good candidate for pd-1 inhibitor. I am resistant to chemo. And the new tumors are in a place where surgery is difficult. I know I have to fight but how?

I am living in paris and I am only 37 years old. I will on a business trip in London next week and I want to get a second opinion with a consultant , Ideally specialised in clear cell ovarian cancer. Do you think it is realistic to have an appointment next week? I don’t know in terms of cost, what is the cost for à French to consult UK doctor? ( I suppose there is some EU agreement, and I am lucky enough to be in France where medical cancer is free and I don’t have extra financial burden)

Cheers

[Delfosba]

Hope you can arrange an appointment for next week!!! Sending all my love and good vibes from Argentina 💕💕💕💪🏻💪🏻💪🏻

[January-2016-UK]

To get an appointment for next week you will very probably have to pay for a private consultation. Approx £300 to £500.

You will need to have your notes translated into English. Whether that’s achievable in a week, I don’t know.

I don’t know which centres / oncologists are considered at the top of the clear cell field but I’m sure others on here do.

I think you will find you have more options than you think. There are trials ongoing for clear cell as well.

Take care, all the best!

[lorraine71-Australia]

Hi I can't help with advise about the second opinion in the Uk but I think it's a good idea,

Just to give you some encouragement I'm sure that you there is a treatment available,

Go for your second opinion but also take to your Doctor and see what see has to say about treatments,

Do you have appointment to see her ?

Chine up keep in touch and take care Lorraine xx

[Maus123]

Hi Jingyu. I'm sorry it's back, and that treatment options are a challenge. I could think of two possible places I would consult with in London (other ladies might know more):

1. The Royal Marsden Hospital. Not sure if they are specialized in clear cell tumours, but they are one of the top cancer centers in Europe, and have expertise in gynecological tumours. I went there with my borderline and low grade serous OC case. Names I heard mention or have good experience with are S. Banerjee or M. Gore .

2. The Imperial College Trust. Specifically: Prof. C. Fotopoulou , as she is an expert in radical surgery for gynecological cancers. On the topic of whether your tumours are operable or not.

Actually having surgery in the UK might be out of the question though, as I imagine it would be quite expensive, except maybe if you were to get permission for planned treatment abroad: europa.eu/youreurope/citize... . From experience I can say that this process takes some time though. Maybe there is a good place in France to obtain a second opinion from too?

Hope you will receive good input in London, or in France, and a feasible treatment path will open up for you. All the best. Maus

[RonLitBer]

clinicaltrials.gov/ct2/show...

I am not entirely sure if this is being offered at the NIH but I would check. If so, they will pay for everything if you get into the trial once you are in the States. You just have to cross the border.

[coksd]

I feel your pain I am 36 and feel great too, I got bad news too this week of recurrence while on avastin I am platinum resistant as i only finished chemotherapy in April I have been offered Gemzar or caelyx as an option I was also told parb inhibitors are not an option. I am taking cbd paste and frankincense oil. I am juicing lots of green veg and wheatgrass. I got an appointment in a private hospital in Dublin this week for next wednesday I hope if you contact the clinic and explain you are in this situation they will fit you in, just have your latest reports to hand or have them forwarded so the consultant is familiar with them. Good Luck. Clare xxx

[Jingyu]

you too! Keep feeling good and all the best for you my sister of combat !

[Neona]

I will private message you.

[Maxjor]

So sorry its back. Since you feel so well, you need to multi-task! Find someone to translate important docs, call whoever you can at the place you want to go for consult until they agree to an appointment, list your questions to carry with you, see if you can get any films you might have put online (so you have access) if not already, etc. etc. Wishing you luck getting it all done and getting the appointment. oxox Judy

[NIKKibailie]

Hey I’m so sorry and I too have had confusing and difficult news while only Into 2 rounds of Carbo and taxol first line.

im 40 and have had 2 rounds of Carbo and taxol. I had a full surgical removal in September and my ods were good. They did a scan as I’m unable to have my 3rd round as I’ve neutropenia and it’s revealed a 3 cm tumour on my diaphragm. I’ve seen my oncologist who is perplexed and for me unbelievably unprofessional In not knowing what to do?! The good news and what I’m hanging on to is that my Ca125 markers are coming down, from 80 to 40 since the treatment started . He said I should now change my treatment to cyleax as Carbo and taxol not working and then referred back to the bloods and completely contradicted himself and went back to carrying on with Carbo and taxol!!! I’m desperate, my cancer is a rare clear cell adenocarcinoma. It’s obviously aggressive or so he said. I’ve 2 young kids and just need some hope! Has anyone else got a rare cancer or had this happen? It’s still stage 3c which is something I guess. I hope someone will respond. Nikki

[Jingyu in reply to NIKKibailie]

As clear cell is rare type you have to go to a big cancer centre to find a specialist ( i e : only two or three in France are qualified) I suppose in your country you have to go to consult a specialty in rare type of ovarian cancer