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Sleepless is sleepless again help please

sleepless in jersey
Posts: 185
Joined: Feb 2011

I dont understand if all the Doc's are saying its the cancer thats filling up in her lungs (has multiple tumors both lungs) are hoping the chemo gets rid of those monsters than tell me when they sent out the fluid that was drained from LT Lung on 8/29 how does report say NEG. for cancer cells???
We dont see the Onc til 9/28 to get more answers.
Thanks for your help.
God Bless

dennycee
Posts: 644
Joined: Mar 2011

I can only speak to my experience but they may be similar enough. I, too, had fluid removed from one of my pleural cavities which was tested and returned negative. The pleural cavity surrounds, but is separate from the lungs. A cancer in the lung is separate from a cancer in the pleural cavity and could potentially be a different cancer.

Do not wait for her appointment at the end of the month to get clarification and answers. Call her oncologist first thing tomorrow and describe your concerns. My experience has been that my doc, the on-call doc or his nurse are happy to answer questions of this nature-even on the weekend. You are your moms best advocate and she is lucky to have you.

dennycee
Posts: 644
Joined: Mar 2011

my onco doc said that my plural effusion could have been caused by irritation from the cancer the radiation or the chemo.

sleepless in jersey
Posts: 185
Joined: Feb 2011

So what was the end TX for you after they drained it?
Did they change chemo?
Mom had no rads to Lungs or surgery besides pleurodesis and is on Gemzar chemo.
I am going to wait til Monday and I will call Onc, its a waste to call on weekends for example I called when Mom was going to the ER on 8/26 and it was Onc's assoc. and never came in nor did we see her Onc til Monday.
So thankfully its not a crisis.
Thank you for explaining...
God Bless

dennycee
Posts: 644
Joined: Mar 2011

My biopsy of fluid was negative. I am working with spirometer to increase lung capacity (a suggestion that was made to someone on one of these threads-Thank You). I need to correct myself on one thing- chemo was not mentioned as probable cause so strong possibility that the cancer itself has caused your moms. I have had radiation but no surgery. The pleuracentesis is the only procedure on my lungs since my biopsies.

I have had four rounds of cisplatin/etopiside. Fortunately, my lung masses have responded well and have been shrinking since my dx last October. As far as the fluid is concerned, the procedure was very recent and we are going to monitor it to see if it re accumulates. Hope I answered your questions.

Best regards.
Denise

sleepless in jersey
Posts: 185
Joined: Feb 2011

Hi Denise Mom now has a congested voice, which she never had until the last 2 months or so. Like you just want her to clear her throat is this all part of the process?

I just had a bad Sunday and sleep last night. Ran into a old employer yestderday with his wife (OB-GYN) and they heard about Mom from a mutual friend and one of the comments that was made is she doesn't have years, months just weeks. Why would he say that, does he know something as a Doctor. I haven't seen them in years...

As I was reading about staying calm :( I got a phone call from my father in law that my husbands aunt past at 81 with lung/brain cancer (DX in June, had no TX)

Im sorry I just feel like im spinning and I cant get off!

You all are so very strong and such amazing people continue to stay strong and positive, im just have a pitty party right now it will shake off soon.

God Bless

dennycee
Posts: 644
Joined: Mar 2011

I do not know what to tell you about the congestion, I don't remember much other than my esophagus hurt when I ate due to radiation. You should definitely contact her doctor in case this is more than hoarseness. As her primary caretaker you are in the best position to bring these changes to her docs attention. Make notes about changes and write down your questions before you see the doc. It is too easy to forget something when you are talking with them.

With regards to what your former employer said, no two patients are going to react the same to treatment. Their experience may be that most patients die within a certain time frame but that does not mean that all will. In 2006, my mom was dx with the same nsclc I have. Her docs said 6-8 months. She passed at 5 and a half mos. One of my docs said 10 mos the other said 5 yrs--that was 11 mos ago. So even the experts can't agree.

The best thing to do is prepare for the worst and enjoy all you can- when her energy level permits. I prepared my will as well as planned and paid for my funeral. I set up living will and prepared power of attorney. My primary caretaker is my cousin who is like a sister and best friend, I added her to my bank accounts so that she can access it in case of emergency.

Most important, check with your local hospital to learn about groups for families and friends. I was, fortunately, close to a Gilda's House when I was taking care of my mom. It gave me great help to be with other people who faced the same challenges. Now, as a patient, I find great comfort talking with others with cancer. Remember, you can do a better job helping your mom fight this disease if you make time for yourself, too.
Best Regards,
Denise

sleepless in jersey
Posts: 185
Joined: Feb 2011

Thanks for all your help!

I picked Mom up yesterday to go meet a friend for lunch and she stood outside crying and I finally got out of her she sick of her watery eyes that just dont stop and I cant breathe!!
After I got her calmed down we had lunch and I tucked her in bed, she was so tired.

Today I picked her up for chemo and she couldn't even turn to get the seatbelt she was so winded, after chemo she was ready to hit a store to get my husbands Birthday present. She did well until we got home when she climed to the 3rd step and sat down and it continued up the rest in her bilevel home.

Dad came home and they went to the hospital shortly later-cant breathe.
There looking for blood clots now.
So on bloodthiner there and trying to get her prednisone out of her from todays treatment and do ct scan with contrast tomorrow.

Thanks for your help again...

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