My mom just turned 65, and went from going to the gym daily, eating healthy, spending her days doing more than a 20 year old to hardly having enough energy to get off the couch.
At the end of September 09, she returned home from one of her weekend excursions and felt not so great. She went to the doc who told her that it was allergies and to go home and take something. She went back the next day where she was X-rayed and about 6 litres of fluid was surrounding her lung. They drained about 2 litres out, and it came back malignant. Since then I have taken her every 4 days for the same thing. They have now put in a permanent drain (saying it is the only thing for her), and a surgeon has told her that surgery is not an option . My frustration is in the oncologist who has not yet seen her. She is close to 2 months into this. Lung cancer with malignant pleural effusion is known now as stage 4, and aggressive, and from what I understand should it not be important for her to see the oncologist? She had an appointment booked which they have just cancelled and rebooked for yet another two weeks. She has awesome outlook and spirit still. The more they postpone the less spirit I see.
I am the daughter that lives close, and am afraid that without treatment even being discussed with her yet, and no anticipated date of start the treatment that I may start to see her even more sick, and less positive. She often doesnt have the energy for anything. Can anyone tell me what I should do, and what I may encounter with her.
I am not ready yet to not have a mom, so I need help with helping her.
Thanks......
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Mom
- By wantanswers
- Posted November 5, 2009 at 11:21 am · 8 replies
- In Non-small cell lung cancer - Stage IV
- Shared with the public
8 replies
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- Newest first
- By pattyp1
- Posted November 5, 2009 at 12:09 pm
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she is so very lucky to have you
the answer is simple - if this onc is not right for you, get another. you need someone to fight along side of you and support mom, not blow you off.
btw - light exercise, such as little walks, will help fight the fatigue
many hugs and best wishes
Pat
- By linda22
- Posted November 5, 2009 at 2:05 pm
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I agree with Pat.
I would contact another oncologist ASAP. This is not right to make her wait. Where do you live and what medical facility are you planning on getting treatment from? Also, what kind of cancer does she have? Thanks. I will say lots of prayers for both of you. Linda
- By GitarGrl
- Posted November 5, 2009 at 2:56 pm
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I agree - get another doctor. My Mom had a similar experience around the same time, only with her, it was the end of August when she started feeling out of breath and started to undergo a battery of tests that all came back negative or inconclusive. They decided to do a VATS surgery and finally when they went in, they found the cancer. She had about 4.5 liters of fluid drained during the procedure and a pleurx catheter put in to do daily drainage. They also took a sample of the tissue to do further testing, but not much else.
As far as the drain goes - if it's the same pleurx that my Mom has, it's not necessarily permanent. It can be taken out if/when the fluid goes away. My Mom just had her 2nd chemo treatment yesterday and the fluid started decreasing about a week and a half after the 1st round from a high of about 550ml per day to a low of 110ml. It went back up to about 330ml before the 2nd round of chemo and now I'm hoping it'll go down again in the next week or so, maybe lower than before.
If you can get an oncologist to get your Mom on chemo, you might have a similar experience. I've heard from people on these boards that the pleurx can come out if the fluid can be brought under control. That's what we're aiming for with my Mom and I'll pray that your Mom receives the same blessing. But you NEED that oncologist to get her set up for chemo.
The chemo scares the crap out of me because it really knocks my Mom down to where she doesn't want to eat or even walk much. I hate those days because I feel really useless, but Mom went into this without any other illnesses or complications, so I feel like it's the chemo making her feel so icky, not her illness. As long as she can fight through the icky days of the chemo, I feel hopeful she'll come out stronger on the other side. (You caught me on a good day because a lot of times, I'm scared spitless, but I'm trying to be positive and hopeful.)
I don't know where you live, but there's got to be some alternative oncologist out there, right? I hope your Mom can get in with someone who won't cancel appointments on her. That's just unbelievable! I wish good things for you and your Mom. Hopefully she can get in to see someone soon.
Cris.
- By kq182
- Posted November 6, 2009 at 2:04 am
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Hi, I would be on the phone, asking if any cancellations have come up, and to please move your Mom up on the list to be seen ASAP. I would also be looking for another onc, anything to get her started and have some type of treatment plan explained to her, also she might need an antidepressant, it is a very hard thing to comprehend that you have Stage IV lung cancer, and meds are needed.
Good luck, be persistant and get her seen by someone soon, Karen
- By Granny888
- Posted November 6, 2009 at 8:49 am
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New oncologist. They can't always fit in newbies within a week or so but most will -- especially the newbies who need care and advice. This is one area where you don't wait a month or two for a first appointment.
I know from experience that there are towns where there is only one oncologist -- if this is the case start lining up your second opinion doctor (you need one regardless) who may be an hour or so away and call the oncologist office DAILY for cancellations.
- By beachgoers5
- Posted November 6, 2009 at 8:50 am
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The first thing I will say is I agree with you. We felt the situation was imperative to see onc, but when you start making calls they don't think twice about scheduling you months out.It was very frustrating. Like pp say keep calling and trying, get on all the lists w/ your cell number in line for cancellation calls. What we finally ended up doing though was have my mom go to ER of the hospital where she wanted the onc and go through them (she was feeling tired,short of breath, but did already have the lc diagnosis by then). She had to spend half the day there but outcome was she got appt within a week or two w/ the oncologist instead of months out? It may be worth a try if your mom is feeling bad.
- By ronnieandjanet
- Posted November 6, 2009 at 10:09 am
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You will find that NO ONE seems to get in a hurry to do anything. I was once told at the beginning of our DX that some cancers grow fast, but that the majority do not and that waiting an extra month would not hurt anything. Well, that is easier said than done when you are dealing with a mother or father or anyone for that matter. I have found that the bigger of a pain in the ass you can be, the faster they move! Keep calling and calling and calling!!! But it does sound like you need to check on another ONC! Good luck and many prayers sent up daily for you and everyone else on this "most valuble" board! <><
- By penny53
- Posted November 6, 2009 at 7:18 pm
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I totally agree, you need to see another onc. The emergency thing might work to. If you can't trust your onc you are going to have a hard time.
Give your Mom a hug
Penny
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