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mrsmanny.... where are you?


Maryanne

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If you are here please post and let us know what happened with the diagnois with your husband.

You guys have been through such a roller coaster ride especially being so young and just married. It was so scary to find out first about the LC, then it wasn't it could be an infection, then changed again might be LC.

You posted last on the 17th. Please update us and let us know what is going on. I pray all is well with your husband.

Maryanne

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Guest Mrsmanny
If you are here please post and let us know what happened with the diagnois with your husband.

You guys have been through such a roller coaster ride especially being so young and just married. It was so scary to find out first about the LC, then it wasn't it could be an infection, then changed again might be LC.

You posted last on the 17th. Please update us and let us know what is going on. I pray all is well with your husband.

Maryanne

We still don't know.

STILL

We are going to Dallas' best pulmonologist Dr Ken Ausloos, who thought on the 23rd it might be Wegner's Disease or some kind of Vasculitis...no such luck....they are doing more special staining... not sure what it is.

We don't know!!!! The path reports ( FOUR WEEKS OUT NOW!) are still not in.

I am so worried. I am starting to fall into a depression as is the hubby. We don't know what we are dealing with. Still could be LC. Our ONC wants to meet with us again...to close up the case... or maybe not.... our friend ( who our ONC is allowed to discuss the case with) said the ONC saw some thing that looked "pre-cancerous" What the heck does that mean?

Meanwhile hubby is still sick, still tired, still coughing COUGH COUGH COUGH he shakes the walls.... still untreated. FOUR months still untreated with no diagnosis.

We are wasting precious time... I ask my hubbby if we should go to abother pulmonologist...he says no, all we would be doing is starting over...essentially, he's right, I JUST WANT ANSWERS.

Sorry. :oops:

That's where we are at... the rollercoaster ride is not over.

:(:cry:

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Hang on Mrs.Manny, I know it's hard! Those extra stains should hopefully explain what the hell is going on. I'm with you, after 3 Alimta treatments I can't breath. Between steriods and inhalers, etc. It's rediculous and feel like we are not necessarily waisting time but that there should be something to make me more comfortable.

Keep us posted!!!!

And I'm working on getting my attitude back everyone!

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Guest Mrsmanny

Justakid

You've been losing your EDGE?

WTF?

Excuse my acronym french.

You, and others on here like MaryAnne & Cindy Oh and others, have been in the back of my mind keeping me running.

I haven't been here because I've been selfish. I don't want to live in this cancer world. I'm hoping everyday it's not cancer...but then I keep hearing in my head what someone here said..."they told me for months it was an infection"

I am a little over emotional and when I get off the board, I cry like a baby. The "it's not fair" part is kicking in. Mortality became a reality and it scares me... and it's not fair.... and I've started to becaome a wreck.

Okay, anyways...enough with the "it's so sad, life's not fair song and dance... Sorry.

Can they make you comfortable with plain old hydrocodone? Or something like that? (forgive my ignorance on that one) What about a mask to breathe in pure air or something?

We got a pretty cool air purifier for only $180.00 from target.com it's even got the UV light to kill bacteria and mold...heck, I figured it couldn't HURT (hopefully)

Talk to you guys later.

Thanks for listening.

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Thanks for updating us, even though it was not much of an update. Real bummer..............!!!

They have to find out eventually what the heck it is. Poor guy, I feel so sorry with all that constant coughing. Has he been able to work?

Its just so long to find out what is wrong. He should be getting some kind of treatment by now. But I am sure you know that.

What I don't understand is you guys waiting for a pathology report for 4 weeks. :shock: Did you find out why? Maybe they lost it or something. Something is just not right.

Please don't be a stranger, we are here so you can vent. We worry about you both.

Hang in there, keep us posted.

Prayers for your hubby...

Maryanne

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Mrsmanny

I cannot believe that you guys are basically where you were at the begining. I may be wrong here but thats not acceptable in my book. Someone, anyone needs to take charge of this situation and get to the bottom of it. If it is cancer, there is precious time being wasted. I know you are doing everything that you "know" to do. Its hard to know what way to turn when you have never been down this street before. My mom was given the run around by her pcp doc, her pulmonoligist and a ENT doc, who all told her over a 6 months period that she had a sinus infection which was causingher to caugh up blood. Heck, even i knew after awhile of this, that it wasmore than sinuses, geez. Finally it took a trip to the ER to get dx. Thanks goodness it was a very slow growing/progressing type of lung cancer. I still get mad though when i think of the time wasted. I just dont think it takes a rocket scientist to figure this stuff out. Well, maybe in your case it does..lol

I dont have any answers or words of wisdom, just my prayers. But please please find someone to get to the bottom of this. Especially if your hubby is not feeling well. Something is not right. Wether it be LC, an infection or whatever, it needs to be taken care of.

Take care and know we are here for you, dont be a stranger.

Love,

Kim

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Guest Mrsmanny

I agree

Four months and an untreated patient!

Last night he took some hydrocodone and it was almost like life was "normal" again. Rarely a cough. It was great. Then I would walk past the scans on the dining room table and remember CRAP, this is n't normal, he's got a mass in his lungs and a pet scan that lit up like a christmas tree!

Today I am having him tell his pulmonologist that he is exposed to Glycol He DJ's in a night club (that has fake fog)(which when inhaled can cause lipoid pneumonia).

I am also having him ask if the samples from the biopsies should be sent to another lab for consulatation.

I feel like I'm about to freak out and act like the Dad in John Q...I want answers darnit.

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:idea: Just a thought....did the pathologists test the lesion for Valley Fever?(Coccidioidomycosis) It is a fairly common fungus in the Southwestern U.S. and has a HORRIBLE tendency to mimic malignancies (i.e. Non-calcified nodules on CT, lights up on PET, etc.)

It is amazing how many Dr.s in other parts of the U.S. (non-endemic areas, that is) have little, or NO knowledge of this illness.

I am currently playing the "waiting game" myself, as I have non-calcified nodules in both lungs, the largest of which was only .7 x 1 centimeter in Feb. Altho' my blood test for Cocci was negative, the Pulmo's here (in AZ, where Cocci is VERY common) seem to feel there is at least as much chance of this being VF as LC. Since the largest nodule is too small for biopsy, we are doing the CT's every 3 mos. and will biopsy at the first change. Apparently, biopsy is the ONLY way to dx Cocci, in a lesion, with any certaintly.

Just my two cents...My prayers will be with you, and your Dr.'s that they will have the wisdom to figure this out! The waiting/wondering certainly takes it's toll.

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Haven't forgotten about Manny, Mrs. Manny. I am hoping and praying for an answer for you two soon and that this is where you need not be and that whatever is going on with Manny will be easily treated and that this will be end up to be a story you will be telling your grandchildren.

Supposedly there is a lung cancer pathologist at the Mayo Clinic in Rochester, Minnesota who is extraordinary. I don't remember where I heard this, but I remembered to place this info in the back of my bonnet for a reason.

All the best to you!

Cindi o'h

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