Freaking out

Hi All,

As I have previously posted Mom had her surgery and was/is doing great; she has to have additional chemo which we were told about before and on her last CT scan before surgery the doc did mention that they say a small amount of fluid in her lungs but that was something we can deal with after surgery and she did not seem alarm about it.

However, since Mom's surgery (6 weeks ago) she started noticing she was not breathing normally -  since we know there was fluid in the lungs we knew why she was breathing the way she was.

She went yesterday to start the additional chemo treatment and told the doc about the breathing and the fluid in the lungs -they sent her for an xray and later come back to tell us it's possible a cancer cell from the fluid my mom had in her stomach from the Ovarian cancer may have lodged in the liner of her lung and therefore the result of the fluid is related to that.

We both went numb because I was praying and trusting God that after the surgery and chemo this was it.. we can now move on with our lives... but this is such a hugh pain .. when does it stop!!!!!  I am mentally paralyzed and have not stop thinking since i heard.. this can not be happening...


Has anyone ever heard this happening before???  HELP!!!!!

[Katie116]

Along with my daughter-in-law's journey, the one constant seems to be change/surprise. It's a roller-coaster ride. I hope it's not cancer.

[Nicola_M]

Hello,

Thanks so much for your reply. Yes, I am beginning to learn that the journery that is full of surprises. It has certainly been a roller coaster ride.

[melissam8484]

And it's a good lesson for all of us to remember to keep bringing up anything that is going on.  I have doctors in my family, so I know full well that doctors are only people and while they might be wonderful and highly trained people - they are not perfect.  I always keep lists of everything that concerns me and my doctor *knows* that despite the fact that I trust him I will always have a lot of questions!  

I'm glad your mom brought it up again and I hope it is able to be taken care of quickly.  She is so lucky to have you supporting her!  Let us know how it turns out!  

[MinnieWM]

Pleural effusions are pretty common after abdominal surgery -- any abdominal surgery.  A lot of times they will resolve on their own.  Mine didn't -- it got worse; so, I had to have it drained.  Fortunately there were no malignant cells in the fluid.  Here's hoping that your mom's will be negative.  

Keep us updated.

[Nicola_M]

Hello,

Yes, Mom was able to get the fluid out -I took her to the hospital and they drained it. She is breathing much better now. But the doc is not happy with her CA125 level, they are thinking of changing her reigment to a different one.

She has to have another CA test done this week and a CT scan on Nov 5th

I will keep you posted.

[Nicola_M]

Hello,

They told us they found cancerous cells in the fluid but I am not if what that means for us.. we are both just shocked from hearing that.. I do not know if it's malignant cells or not.

I will ask the doc on our next visit and keep you all posted.

[bohan54]

I have malignant pleural effusion.  First they drain it by with a needle in your back but if it keeps coming back, they must find other solutions.  I have a pleurex catheter tube which is drained twice weekly by a visiting nurse.  Your mom might be able to reach a better solution with her team.  Hoping for the best for her,
Sharon

[Nicola_M]

Hello,

I just wanted to update you and everyone about the results of Mom's CA125  level; it seems that is has gone up - it was 550 before surgery -the first test after surgery it was 577 and now this last test shows it's 657 - so I am not sure what to make of this.

We are doing on Thursday for a CT scan and after we are doing to see the Doctor. My mind is going round in circles as I type this as I try to understand and figure why it has gone up so high.

Any thoughts or ideas anyone? Is there specific questions I need to ask the doctor on this?

Nicola.

[MinnieWM]

Nicola,

This shouldn't change her course of treatment, although it may change her staging.  Do you know what the doctor has planned.  Here it is 6 cycles of carbo/taxol.  Your Mom's CA-125 is not outrageously high; so, chemo therapy may take care of everything.

Keep us advised.

Minnie

[Nicola_M]

Hello,

We are going to see the doctor tomorrow so I will know then what the plan it. He did mention that he was not happy with the level and he will have to re -evaluate. What do you mean it may change the staging?

It think we were under the impression - after surgery the levels would be lower than that... we did not expect it to go higher.

I will update after seeing the doctor.

Nicola.

[milashka]

I have read that pleural effusions can actually raise the tumor marker.

That said, it is best left to the oncologist to make the decision as to the next course of action. There are so many variables in this disease, its treatment and prognosis that it is overwhelming for most of us and I suspect for physicians as well sometimes.

Best wishes!

[Nicola_M]

Hello,

Sorry for the delay in replying but I was busy with mom. Just to update you all, mom was hospitalize for 12 days from Nov 5 to 16 - for the issue with her lungs. The doctors decided to let it drain - so they have to insert a tung into her lunds and it allowed the fluid to drain naturally, then they injected a medication into her lungs with will find any opening and blocked it up.

Also, her oncologisted is changing her chemo treatment from charbo/taxol to Caelyx.

Has anyone used Caelyx before?

Nicola

[Nicola_M]

Hello,

Mom's doc is changing her treatment to Caelyx. I just posted an updated.


Regards,
Nicola