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Update to "Test time again"


Outrider1

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Well its seems as far as my maintenance scans go and the MRI of the head all is still the same, no regrowth just the same very light activity as usual. So that means still NED for my type of cancer. As for the scan on my liver, I am just now finding out about two spots that have been there the whole time since May 2008 :x . The radiologist suggested one was a hemangioma which is a cluster of blood vessels and has been there since at least 2004 when I studies done prior to removal of an infected gallbladder. The other has remained the same throughout all the cancer treatments with no shrinkage or growth so suggests it is not cancer. So, Although I didn't know about the second spot till just now, I count that as good news. Nothing has changed in my head other than my migraines have added a little spice to my life by changing symptoms, along with the fact that there has been no change to the lessions on my brain which led the ONC. to declare that whatever was going on in there was NOT cancer and was probably MS (hallelujia!). I told him we needed to do something about it being stated as mets to the brain that is scattered all through-out my records and get a definative diagnosis in there but that I can't get the neurologist of his butt. All he does is throw his hands up and say "we just don't know what it is". Makes me want to pull what little hair I have right now out and punch him in the nose!

Also, I got to see a new Onc. Fellow, this time; new to me and new to the program. I do not like when I walk into the exam room for scan results, to be asked "well, what can I do for you? DUH!!?? and to also be told "well, I can't do anything about that, I am the oncologist(this in response to getting something done about getting a definite diagnosis and possible treatment plan for my head issues). And that they can not renew my meds for the migraines, which is such Bull-oney.

My next scans have been moved out to 4 months, which I am also not comfortable with given the nature of this type cancer. So if I seem to be venting, I am,(for which I am sorry to be doing so here) although I am happy that the scans came out well.

Now I am gonna take on the VA once again since I no longer seem to be getting the same treatment and have been demoted to non-patient status in the eyes of the clerks and nurses (as so stated to me last month). So if you see a short haired, short older looking woman with fire in her eyes running around the VA, it'll be me, lol.

Dawn

PS: I also lost 10 lbs, last month, without trying to. wish I had enough money to go buy some pants that fit,lol. Or still had my sewing machine so I could take in the ones I have. Guess I will just have to borrow from my daughters, lol. What a turn around!

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Dawn,

No problem venting here. You have every right to be angry and frustrated. When I read about your battle, it puts my muscle problem into perspective. So thank you, I shall complain less because of the perspective.

I pray for you to get some answers. I had a liver biopsy a few years ago, and it was that mass of blood vessels that you spoke of. They told me the biopsy would not be painful, and they were liars. It was extremely painful, and they won't do that to me again unless they knock me out!

I'll keep my eyes out for a little angry woman at the VA and introduce myself! LOL!

HUGS

Judy in MI

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Dawn,never apologize for venting. You are certainly at the right place to be understood . First of all, I'm so glad that your scans were good, but sorry you can't get any satisfactory help with dealing with your head issues. Don't blame you for pushing to get the treatment you so deserve, but I'm just so sorry that you have to go through all of that aggravation. Hope you soon get the answers and relief to your pain.

Hugs,

Sue

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NED - good to hear, Dawn. I know if I had done my job the way some of these docs do theirs, I would not have had mine very long. I hear you loud and clear about what is going on and I do feel for you. Just keep doing what you've been doing and be sure to keep them all on their toes. They work for YOU, remember, and should be doing right by you. I'm pulling for ya.

Kasey

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Dawn, if there was ever a place to vent, this is it! Sorry you're having so much trouble getting the treatment you want. Congrats on the scans, though!

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Love the scan news - and the rest of the mess had steam almost coming out of my ears too. I wish I could see you running around the VA - just as a learning experience!. I know what you mean when an onc says "am I following you for that" - yes please give me my happy and sleeping pill refills so I don't go psycho.

I am so very glad to read about the scans though - made me smile at work even.

Annette

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Ah I'm so sorry for all the run around you've had to go thru but I'm so happy about the scans and that the liver spots are not worrisome. Im keeping you in my prayers. ((hugs))

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Adding my voice to the many others who say Vent, Vent, Vent Away. Oh, I rhymed without even trying lol. So glad about the scans and the liver stuff. NED is certainly something to celebrate so don't let the other icky stuff overshadow it. I know I'm an incorrigible optomist but maybe those "brain mets" running thru your records will help you from falling too far into that "non-patient status." But that bull about the meds for migraines, that's just wrong. I have learned that oncs don't really want to step out of their comfort zones, but then they need to life more than a finger to get you to the right doc in the VA system.

Hang in there girl.

Judy in KW

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  • 3 weeks later...

You can always vent here, that is one of the things this site is for. We are always here to listen and give you support and some advice is we had some to share.

Glad to hear your scans were MED... that is great... I wouldn't strss too much over the spot in the liver as they probably will find out it is nothing to be concened about. If not we are hear to help you through... but meamwhile. keep a positive attitude... Will be thinking about you and sending good vibes your way.

take care

Maryanne

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