Whippit10 years ago

Dear Pilar

I wonder where you are located. I have never heard of anyone going back on chemotherapy whilst the CA125 count is within the normal range. I hope someone will correct me if this is untrue.

My CA went from the nadir of 7 and is currently about 55. I had a scan in January which showed some progression of disease, and had another last week but I am still on wait and see as far as chemotherapy is concerned. My oncologist is keeping a careful eye on me and I'm keeping a diary to record any discomfort I'm feeling. I'm gearing up to resume chemotherapy in the next month or so or perhaps immediately if my oncologist recommends this.

It was interesting to read you had two surgical processes for your Stage IV. Were these radical surgical techniques which peeled the tumours from organs or was it a total abdominal hysterectomy? I'm just wondering whether the chemotherapy regime would be different for a woman who'd been given two sets of radical surgery.

If you are a bit concerned I think you should go back to your oncologist and ask them to explain again why they are recommending this course of action in your case. You could equally well ask for a second opinion at another hospital.

I do hope you get more information in order to understand why this advice has been given.

xxx love Annie

ArwenP in reply to Whippit10 years ago

Dear Annie, thank you for your anwser. I had a full hysterectomy the first time and then, because of a suspect (thal later was not malignant even a small CAT activity) a second surgery.

To me is somehow surprising to have 19 CA125 and no progression in the image test and with just Avastin. Then Avastin has been stoppe on Friday and redirected to have a full Chemo in a week from now

Definitely I will ask for a second opinion. I am bewteen Spain and US and I will go to MD Anderson

I truly appreciate your suggestion and support,

All the best.xxxPilar

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Hidden10 years ago

Just to clarify regarding the CA 125, I can confirm that chemo can still be required even when the CA is below normal. Sandra started her 2nd line treatment with a CA of 20, this was all because her scan showed progression to the spleen and in those days it was normal practice to zap anything that appears from a scan, today however symptoms appear to be the driving reason for starting treatment even if the CA is above normal. Love Paul xx

ArwenP in reply to Hidden10 years ago

HI, Thank you for your kind mail. Also for bringing another perspective about it, Even thou I feel ok and my CA and progression seem under "control" probably docor trying to be proactive. In any case, I am trying to have a second opinion. I think it is quite early to be that leve of proactivity.

In any case I have already schedules 2 chemo in 1 week from now and with some chances to have this second opinion in advance.

Thank you very much for your thoughs and suggestions. Truly appreciate it

All the best,xxxxxPilar

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Anjen10 years ago

Hi, CA 125 is quite a tricky one. After I had my first line chemo which finished in December 2012, my CA 125 was 102 (from 4190 at diagnosis). It started to increase steadily, almost doubled every four to five weeks, but I was asymptomatic. My Oncologist wanted to wait and watch and my CA 125 reached 1200+ before I saw lesions appearing in my left breast/ribs. My second line chemo was started in early May 2013.

ArwenP in reply to Anjen10 years ago

Hi Anjen, first of all I hope you are doing well with your chemo if still there. As per your description to me your therapeutical strategy seems alligned with the one that it is considered in guidelines, My CA is 19 and almost no progression in CT.

And probably in my case it is a little bit early to start a Chemo regime for second time. I will try to ask for a second opinion before to start with it.

It helos me lot your comments and support and truly appreciate it

All the best.xxxx. Pilar

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Hidden10 years ago

By TAC do you mean computer axial tomography - what's commonly called CT or CAT scans here?

One option would be to ask for a PET/CT scan which should show how active the cancer is or is not. Another option would be to ask for a test called HE4, which can sometimes be more accurate than CA125.

It sounds as if you have had a good response to this course of chemo so far and perhaps your oncologist is being pro-active in trying to get you the best possible result.

So much depends on you as an individual and your oncologist. I know that some oncologists do start chemo based on a changing pattern of CA125 that may still be within the normal range. My oncologist tends to base his decisions on a CA125 that doubles and then doubles again within two months, but he is flexible. He would also order probably a PET/CT if he was concerned about the numbers. He acts on a series of CA125 tests, not a single one (but if I suddenly had a huge jump I think he would act immediately).

That would be starting from no treatment/normal values.

Since you are having treatment it's obviously different. CA125 values can rise or fall for other reasons. I think all you can do is to ask questions until you understand exactly what is going on.

I wish you the best of luck and I hope you get all the information you need. Cx

ArwenP10 years ago

Hi Chrystynh. Yeas this is the CT whichs in m case showed ver minimum changes (doctors wording) and CA 19. Previous one was 14 (30 days within). The question is thta I have been scheduked for a PET in September by my GYN/surgeon. But my ONS will change my Avastin regime (just) for a full Chemo to be started in a week form now,

To me ist seems a little bit early and probably too proactive to do so. I will ask for a second opinion and I hope to be on time

In any case, doctor is taking care and probably conservative about therapeutic options. And not totally alligned with GYN/Surgeon.

I truly appreciate your valuable comments and your support,

All the best,xxxxxPilar