Where do I go from here?

[SharonCol]

Hi, I have Stage 3C High Grade Serous Carcinoma. (fallopian tube cancer that spread) I was initially diagnosed November of 2016. I had debulking surgery followed by about 20 treatments of carbo-platin and pacli-taxil. After treatment was finished, they felt that I was in remission, however, after a few months, a CT scan showed numerous spots of cancer from my lungs to my pelvis area. I was then advised that my cancer is incurable. I have now just finished 6 months of carbo & doxil treatment. A CT scan after 3 months, showed that the treatment was working and the cancer was reduced. Treatment is now finished and I am going for another CT scan tomorrow.

My CA 125 levels were never very high. At the highest, they were only 80 and immediately began to drop as soon as I started my first round of chemo and got down to 16. When my CA 125 went up to 36, my doctor felt they were still in the normal range and didn't want to do any further investigations. I persuaded them to do a CT scan which revealed that the cancer had spread to the numerous spots as mentioned above. This last round of chemo has only reduced my CA 125 level to 34.6. The doctor feels this is normal, however I am nervous because my levels were never that high. I see my doctor in 10 days. I think the plan will be to take me off of chemo again. Although the chemo treatments are getting harder on my body, I am terrified that if I go off of treatment, the cancer will spread again and they might not catch it in time.

I am hoping there is some sort of maintenance treatment out there that can keep the cancer in check. Please advise if any of you have a similar experience and whether you can give me any maintenance suggestions that I can bring up with my doctor.

Unfortunately, when I go to the cancer clinic, I see a resident as my gyno is a surgeon and doesn't see patients once surgery is over. I usually see someone different each visit, which is uncomfortable for me, given the aggressive nature of this disease. The resident then discusses my ongoing care with the team in the back room and advises me further.

Thank you for any input.

To everyone out there, I wish you the best and pray for all of you.

[Mistymit]

A couple of suggestions- find a gynecological oncologist- mine has been helpful in recommending- parp inhibitors and avastin for after chemo to my dosing doc (oncologist/hematologist). He had also sent my tumor for testing that identified my current chemo to which my tumor type has been shown to respond. I think that's called Karis. Hope that helps!

[THENORTHERNLIGHTS]

Hi SharonCol

I would prolly switch doctors as misty said to GYN/Oncologist immediately....I would also explore trial studies that might be appropriate for u

Best of luck!!!!

[Cjbloomq]

Hi SharonCol. I too have the same cancer(but ovarian).Been thru chemo,debulking,chemo then came back,chemo again then put on Avastin for maintenance. Back on chemo then just put on a parp inhibitor,Zejula in May. So far so good.Been doing this since 2013. My doc was up front and said it will come back,they just don't know when and were.

Please find yourself an oncologist/gyn or ongologist who treats Ovarian cancer.

Best of everything to you,keep the faith. Any questions,please ask. We all are here for each other.

Caroline

[CALENA in reply to Cjbloomq]

SharonCol and Caroline: I see my doctor tomorrow I'm about the same as you two - as this journey goes. I keep mentioning Avastin since Doxil (#4 tomorrow) hasn't done much to reduce my CA125 lower than 704 (last month) I'm going to a prestigious hospital in Tampa, FL for cancer and don't feel like I'm looked at as an individual only another case of "not curable" My treatments started June 2016. Down, up, down, up. Feel like I'm on a roller coaster. LOL

[Wildwest]

🙏🏼🙏🏼♥️❌♥️❌😘

[Angel9]

Was meant to see Gynea / oncology on 10th October but it's been brought forward to today 17/9/18 with just the oncologist very apprehensive 😕

[Rosellen12]

Hi Sharon,

My story is very similar to most, mostly like cjbloomq aka Caroline. Having stage 3c, 1st in 2014 with surgery & chemo, then 2017 surgery & chemo followed by avastin & now taking Zejula since Jan 2018. Surgeon was gyn/onoc 1st & 2nd time but was being followed by internal med oncologist. After 2nd time I asked for my care be transferred to the gyn/onoc surgeon since he specializes in gynecological cancers in which it was, So now that he follows me he watches the CA125 very closely since he said in both cases it was only moderately elevated. It now stays in single # around 8.

So I believe you definitely need the gyn/onoc ti follow you, ask & demand or go to another center if you can. You deserve the best of care.

Loving all my real sisters!

Rose

[ns5951]

I have stage 4 ovarian diagnosed Dec 2016. I'm on maintenance Cisplatin and gemzar. Working well - CA125 has been in normal range for awhile now. Get second opinions.

[Mamaw1]

Hi. I was diagnosed with stage 3 serve carsoma. My level was 4580. We do not know what my normal is. Anyway I have had treatment with the same drug you had. My level in April was 7. I have been off treatments since may. My last c125 showed 38. Since I do not have a reference I am ok with 38. I too worry about cancer coming back. I feel good and have more energy than before. I cannot sustain the energy level but when I have it. I have it. I am currently taking cbd oil advanced and this helps. I do not know if you believe in God or not, but praying helps. If you do reach out, the bible tells us that if we ask in Jesus name it will be given. I believe this, plus I have numerous prayer warriors from my daughters church family and from my church family. I would not worry till there is something to worry about. C125 will change depending on how or what your body is going through, cold. Flue, high blood pressure (which I have) worry, stress etc. I hope this helps, it has helped me. Love to you

[SharonCol]

Hi everyone, thanks for the information. It is so helpful to hear from other women in the same boat. I have now been told that I am at the end of treatment. I live in Alberta Canada so not all drugs are approved here. I have fallopian Tube Stage 3C high grade cancer, BRAC negative. I had about 20 carbo/paclitaxel treatments which worked but the cancer returned after a few months. I then had Carbo/doxil which worked but the relentless cancer returned. I then had gemcetabine/cisplatin. After 6 treatments, my CA was 36 and my CT scan looked good. Some cancer but only small spots. I wanted to continue with treatment as my CA 125 went up shortly after treatment stopped and there are cancer nodules several places in my lungs, abdomen and pelvis. My gynecologist told me that they had given me the recommended dose and any more, would be too hard on my body. They told me that I had run out of treatment options. I just turned 68 but I am not ready to throw in the towel. I pushed for some form of treatment as I am not ready to "give up" I applied for an immunotherapy clinical trial but I was rejected as my PTT was high. They have told me that my last resort is topetecan but it works in only 15% to 20% of patients and its my decision whether to go on it or just do nothing. They only give 4 cycles and there are side effects. Has anyone been on topetecan??? Zezula is not approved in Canada. Has anyone had a similar experience? Has anyone been on topetecan with good results?

Thanks so much to everyone out there. Blessings to you all.