mets to lung
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Biopsy of lymph nodes on "good side" came back no cancer. They don't know why the lymph nodes that are left on the bad side and now the good side and in the neck are all swelling and hurt, but the ones they just took out of the good side have no cancer in them.
Waiting for insurance to allow scans or surgery for large intestine...
IN the meantime, I am still short of breath and a bit tired but less gut pain. And lots of time with family, so life is good.
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exactly Brenda! Makes me feel like it is the crap shoot that it is wen on my first viisiy lost all this news she rattled off a list of drugs and there SEs and asked which one I wanted to do. Seriously? How should i know. I want her to have te answers and just fix it. Like you said!
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delerium, how frustrating that you have to wait so long for approval on the cyber knife. That just doesn't seem right. If the doctor is recommending it, it should be approved. Period. I hope you get the approval asap. The waiting has to be scary. Adnerb, glad to hear your good results from abraxane. Hope delerium and I get the same results. I love that my Onc is always ready with the next course of action when a switch in treatment plans is needed. I never question his judgement though I do always research it as soon as I get to my computer. So far he's taken me down the right path. Side effects haven't been too bad .... Just the darned fatigue. So, at least I have a reason for being so lazy!! LOL
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Delirium Pie,
You wrote: "I'm pretty negative right now again because my insurance company feels like they've written me off too. Brain tumors growing, time of the essence and tey can't just approve my cyber knife procedure. I was supposed to have it before Xmas. Just frustrating and scary."
This is outrageous. If you have followed up with the insurance company to no avail, I think you should have a lawyer contact them. That might would speed things up.
Jeanne
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I have the breast cancer Medicaid don't think I can sue the government. My holiday theory seems true. Dr office called to have it expedited. They would not because it had alreay been approved. Good news right? Nope the authorization expired on 12/31. So what does thatvsaybanoutvwjen it got approved? Obviously before xmas when I was supposed to have it. Someone just dropped te ball and did not communicate. So now I have to wait still until they will grant an extension on the approval. Meanwhile, symptoms getting worse and starting to have problems from being in the steroids for an extended period.
I've always had private insurance my whole life and never once used it. Things have become so ridiculously capitalized in the insurance industry. It is disgusting. Don't even get me started on te behavior I MetLife. Siiigh
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I'm just getting caught up on your posts DPie and all I can say is Met Life needs to get their heads out of their arse. How can they fail to communicate when someone's life is on the line? How do these people sleep at night? Shameful....
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Just curious what are the issues u r having with the steroids
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Just muscle weakness and insomnia so far this time, from the steroids. I just want off as soon as possible.
When I was on them during WBR, I was on a huge dose (32 mg a day) for over a month and half due to the amount of swelling I had initially and also due to the pharmacy messing up my rx, At that time, I had near total muscle waste, serious facial swelling, near zero sleep, adrenal gland issues, actual Decadron psychosis, depression, hallucinations, headaches, the whole gamut. It was the most horrible experience of my life and seemed like it would never end. And the dose was so high that it took forever to wean off, and I also went through all of the withdrawal symptoms. Decadron is a very dangerous drug. but a necessary one for us.
Medicaid is the one jacking with my surgery. Metlife is my STD insurance. They denied my claim saying i have a pre existing condition. Even though the only reason I cant work was because of the brain mets, which I never had before. My job is 30 miles away and the dr still has not cleared me to drive. I worked the entire time through my "pre existing" cancer treatment.
Got my approval letter from medicaid yesterday. It was dated 1/5/15 approving five fractures between 12/15 and 12/31. Genius, also a waste of the paper it was printed on. Now another week has passed and they still have not granted the extension. I just don't get it. and it seems there is no one to talk to. Dr office isn't helping me either. They just say that they have called about it. I wonder if there is a size limit of the tumors for Cyberknife? Mine tend to grow very fast when they are growing. and I can tell that they still are from my symptoms. I was supposed to have this procedure nearly a month ago now. What if they have grown too latge to zap now??
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DPie, I'm on a large steroid dies right now too. Inflammation in lungs but also in all my joints. If I drop below 20mg , I get more laborious in my breathing and I hurt a lot. Has anyone else experienced this?
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thank you for the information they just lowered mine from 20 milligrams to 15 and I couldn't breathe so the oncologist moved to backup thinking that the pulmonologist did it because of the long term effects
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here is something to consider and it was the biggest scare factor for me. Because he symptoms and SEs are a all overlapping, it is difficult to tell what is being caused by increases and decreases in the dosage. The RO kept increasing it again when I was trying to wean off due to the many issues I wa having, including trouble breathing and headaches/pressure. As it turns out, this was all being caused by the high dosage and did not resolve until I was off the meds. I was able I figure it out myself finally and eventually just made my own weaning schedule. It is very confusing and the drs seem I know so little about it or they at least won't admit to any of it. It is one thing I am glad I googled.
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Oh ok thanks, not getting the chubby cheeks, lol
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I look like the Michelin man my cheeks are so round. pdie, blondie, do you folks have inflammation in your lungs still? Mine feels like a constant tightness and if I over exert I just can't catch my breath and I get lightheaded. My lungs feel full of smoke. How so yours feel?
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jab do you have pleural effusion?
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no, I do have pleural thickening.
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Hi Ladies, I have never had a problem with Bronchitis nor do I smoke. However after being very wheezy and mucus problems I developed strange noises and soreness in the chest. I went into the ER and was dx with Bronchitis. Is this common? Happen to many others?Cathy
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I also have bronchitis right now!
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Hi Beatmon and ty for your response. Have you had it before? Or since the bc mets to lungs?
Cathy
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bronchitis is very common for me. At least once a year. Dpie, this just makes me sick. I am so sorry for your insurance troubles. I'd like to kick someone in the rear! I pray that they Ren't too big to zap and your approval comes asap
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my work used to call me Typhoid Mary because I got bronchitis or horrible colds with asthma yearly......this was without cancer.
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Got approval for CT scan with contrast - insurance said no chest - just abdominal and pelvic scans. Blood work, stool & urine samples (and scheduled for a pelvic exam and pap).
Went Friday for tests. Waiting... not as easy this time - for some reason more "scanxiety" than past go rounds. Hubby is working and my sons are each going out of town with our cars tomorrow, so I will be home alone tomorrow all day just waiting.
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Thinking of you Chanah, hope the scans go well. Maybe try to tke your mind of it by watching a movie or going for a massage
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hope all goes well chanah. Scans are soooo stressful!!
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Chanah, fingers crossed for good results!!
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Question: Just started Tamoxifen and have costochronditis but recently have had the feeling that someone is sitting on my chest? Would that medicine or that inflammation cause this? And it hurts in my upper back also. ????
Thanks.
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wr, I blame my upper back pain on pleural effusion. It seems to lessen after draining.
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Chanah: Hugs to you and hoping for good results.
jab: Does your chest hurt when you sneeze or cough? I also have pleural thickening and it was decreasing according to last scan. Now I'm worried my mets have progressed.
Brenda
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oh my gosh. Got drained today. This was my third one. Each has been different. This one was waaaay different. It was so painful!! The first time I felt the puncture when the needle went in. Uncomfortable but no biggy. Second time the dr was so good I thought he was still numbing me when he inserted the cath. Hair a tiny bit of chest pain from the suction on the second bottle.
Today: dr was tapping on my back as he put in lidocaine. That itself hurt like crazy. When he inserted cath, it was like I could feel him stabbing me repeatedly deep inside. I am sure that he wasn't but it felt that way. He mentioned scar tissue and nerve damage. I buy that. Could feel the pressure from the bottle the whole time. Even up into my abdomen. I sort of liked that though because I always feel so swollen there and don't think it ever drains enough. I Told him about this pain and he said it was up to me if I wanted to stop. I'm not the expert! How should I know iifwe need to stop? Anyway i kept on because I wanted as much out as possible. Suddenly out of no where I got all these sharp stabbing pains in my abdomen area again. It was crazy, like I started uncontrollably saying ow ow ow ow and gripping the pillow. He finally stopped it and took out the needle.
Oddly enough, I have never had the relief so immediately after. The uppe back pain was gone as soon as the draining started. Abdomen/front of lung is still quite sore feeling though and painful to touch. Only had a couple of coughs as so posed to before. Then I went and had chemo. Lol
Ok rant over. It was jut such a bad/weird experience. Has anyone else had anything like that happen? The nurse had said I had fibrous something in there. He said that can make it more difficult. But it drained freely for about a liter. Hoping the chemo will help it this time.
Wishing beyond a pleasant night.
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DelPie: I remember my first draining to be the worst! The radiologist who did it was drinking his coffee and did not seem to care how I felt, and kept warning me that it was going to hurt. Naturally I was very scared to do another one after that. The next 4 drainings were amazingly easier. I was actually looking forward to them!!! I've told this story before, and I don't mind telling this again. These 2 ladies, an RN and a PA, engaged me in conversation while they were draining. I was allowed to look at the ultrasound machine. I was given 2 kinds of pain meds, one for the skin and another for deeper tissue. The pleural effusion eventually went away when the chemo started to work.
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Well glad u got it drained.
My lungs have fluid in it just not enough to drain.
Am in the hospital as we speak broke my ankle in 3 places, had surgery am about to go to rehab. Hang in there, that is all we can do.
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