brain mets loss still continues

hezzy · 12-01-2009, 08:18 PM

I dont know what to think every ONC and Dr that I have seen has told me something different. It's at the point where I think Im losing my mind and I don't know what to do anymore or what to think. I've been in ER several times due to side effects from the radiation.
They did WBR for 17 days, than radiosurgery radiation and thats where Im lost on the results of that. I'll be asking my ONC on the third to do a MRI to tell me something. Im lost even worse.
She ordered me Xeloda taking 8 pills a day but told me not to start the med yet. I dont understand.
On top of this my throat is so swollen I feel like I cant breathe right at all. Today I was in ER and they did a Cscan and didnt find anything they said it was just due to the radiation and I would have to deal with it. They told me Im breathing fine so they wouldnt give me any oxygen to go home on.
Im on steriod, ativan, blood thinner from blood clots, pain patch, and I wondered if any of these were making me so swollen.
I just know that I probably need to be seeing another ONC soon but dont even know where to start. Im still taking Herceptin, and getting a shot for being er+.

I see my ONC on the third and Im asking for another MRI and some straight answers on what is giong on with my brain seeing each DR thinks something different. I dont know where to go or what to ask when I get there.

Please any and all advice about the throat being swollen where I feel like I cant breathe, and the radiation. Even a great Dr would be great PLEASE IM SO LOST

ElaineM · 12-01-2009, 09:21 PM

I am so sorry you are having such a hard time. Does your area have a state medical board where you can find information about oncologists in your area? Does your insurance carrier have a list of participating oncologists? I wonder if the websites of the local hospitals has a physician list according to medical specialty? There are a couple websites where you can find basic information about oncologists in your area. One is drscore.com. Can one of your other physicians suggest a new oncologist? In the meantime I would keep asking the radiologist questions and keep reporting your symptoms. He or she might have suggestions about how to cope with them. Keep showing up at the ER until someone helps you or refers you to a doctor who can help you.
Good luck. I have my fingers crossed for you, so don't give up.

Rich66 · 12-01-2009, 09:58 PM

Not advising, just offering the link where I put related items:
http://her2support.org/vbulletin/showthread.php?t=42084

Jackie07 · 12-01-2009, 10:44 PM

Hezzy,

I believe steroid does have the effect of making people look bulky. (Ever heard of those body builders taking steroid to 'swell' up their muscles?) I wondered if it has anything to do with your throat being swollen.

Your doctors might not be ignoring you - it takes time for the MRI to show tumor changes. A slow-growing tumor - like the 'neurocytomas' in my brain - reacts to radation 'slowly' (the three residue tumors haven't changed size since 3 doses of Gammaknife in 2003 - a good enough news for me) It is the fast-growing tumor that shows shrinkage within shorter period of time. But however fast our breast cancer might be, it's going to take a while. I remember my BC diagnosis in 2003 - it was 1.2 cm and the surgeon thought it had been growing for 2 1/2 years based on the super fast mitotic rate.

About your throat again - I'm thinking that your doctor might have thought that you were being too nervous. A 'choking' feeling sometimes is associated with our nerves. Is there a family doctor you can talk to and get it checked out? My husband shared with me one of his college experiences. Someone who was eating at the same table 'almost' choked to death by food, and that led to the worsening of hubby's 'Freshman' depression which then almost resulted in an eating disorder. He then dropped out of school and did not go back until 10 years later.

Depending on your health insurance policy, your oncologist might not be the best person to ask for certain tests/referrals. My oncologist sort of ignored my requests (instead, he gave me a prescription of antidepressant), so I went to my family doctor for help. He ran some tests and then gave me a referral to get my digestion problem solved (the GI doctor told me to eat yogurt - because all the antibiotics I had taken killed the good bacteria in my digestive tract - 2 weeks of yogurt will replenish the balance.) Naturally I don't worry about whether my cancer had spread to my abdominal area any more.

The gynecologist I was referred to (after talking to the geneticist) agreed with me that taking off my ovaries might cut some risk (40%)of my getting ovarian cancer - based on my own cancer history and family history. (Mother (86) is an 11-year survivor of Non-Hodgekin's Lymphoma; 2nd Brother (10 years my senior) is undergoing elective chemo (5-Fu) treatment right now after undergoing a surgery for colon cancer.

I'm sure my oncologist thinks I have over-reacted. The funny thing is that the gynecology/oncology surgeon supports my decision. Perhaps the medical oncologist felt his authority being questioned (he's correct in that there's no cancer in my GI tract, but he did spend some time studying the new growth of hemangioma in my liver that had shown up in the CT scan my family doctor had ordered for me - I did not dreamed up things, there's something growing there and it's good to find out it's not harmful) and the gynecological surgeon is used to doing the prophylectic procedure for patients like me.

Hope you are feeling/getting better every day.

dchips1 · 12-02-2009, 07:32 PM

Hi, I have been on steroids again since September, they can cause all sorts of issues. I know right now my face is so puffy that it was pushing on my sinus area and wound up feeling so congested. I have had WBR as well and 2 gamma knifes. I am not sure why your throat feels the way it does, try garling with warm salt water, eleveate head of bed and humidy the room your are in. I know for me the "panicky" lost feeling just add to the fatique, stress and world spinning around. Keep on the herceptin, supposably when you do WBR you fracture the Blood brain Barrier and it gets in there? Hang in there, most important of all is take some time for yourself, rest, eat and give yourself a few days to catch up, then look at making changes to your treatment team if needed. I am sorry that I can't offer any better advice. Steroids can make you deppressed, or agitated, fatiqued, short tempered and rapid non rational thinking.... forgetful and other health issues. Take something to relax if you need too. I got to the point I felt crazy because I was not sleeping at night.

Good Luck
Thoughts and Prayers to you
Darita

schoolteacher · 12-03-2009, 06:15 AM

Hezzy,

Hope you are feeling better today. You will be in my prayers.

Amelia

Jackie07 · 12-13-2009, 05:03 PM

Hezzy,

Just wondered how you are feeling today.

DonnaD · 12-14-2009, 09:34 AM

Hi Hezzy,
Where are you in IL? I am a firm believer in second/third opinions and seeking a teaching hospital for those opinions. Two good spots in Chicago are Northwestern and Rush.

It is always good to have all your tests results in a file of your own. If you do seek a second opinion they will be needed.

It is hard when you are seeing more than your onc for other problems other than BC. Each has their own specific knowledge and it is hard to get them to "talk" to each other. Complicated more if you have trips to the ER.

I am sorry you are struggling right now. My prayer is that you find the right Dr who will get you on a smooth path.

Donna

CourtneyL · 12-16-2009, 07:26 PM

Hi Hezzy - I hope that you are getting some answers and clarity about your treatment plan. Another suggestion for onc's in Illinois is Dr. Keith Block of the Block Integrative Cancer Center. I believe they are outside Chicago somewhere. I'm not a patient of Dr. Block's but I have his book and have heard him speak and he seems pretty great. His patients experience remarkable results through an integrative approach.