Bad Bad News From Pulmonologist
I saw my pulomonologist and got the results of my latest CT Scan. I have been sick with a cough/hoarseness since we went ice fishing up north (I got sick up on vacation).
The hypersensitivity pneumonitis that took 15% of my left lung in that painful thoractomy in July 2013(which I am STILL in severe pain from), is back. It is back in BOTH lungs near the middle of the chest. There is no cure. We can't figure out what in my enviornment that is causing this lung reaction.
The pulmonologist has had me on 60 mg of Prednisone since mid-December 2013. I am now on high dosage Prednisone until May (40 mg/day for 6 weeks, then a decrease until May). He also has me on Bactrim.Since I have a severe case that came back so quick, he said he did a more in depth look at my July pathology report. It seems I have some pneumonia back then,too, so he thinks I may still have that,too. So I have at least TWO things going on with my lungs.
He said he has heard of doing a "light" chemotherapy for severe cases like mine, but that would be after my referral to the Mayo Clinic in Rochester, MN. Even though, it isn't cancer, he has learned that chemo might help.
So as it stands, we are trying to slow the progression. It is hard for me to breathe, I am constantly coughing (which has reaggravated the surgical site where they cut the rib and cartilage to get at the lung mass in July), hoarse voice (my whiney nasally WI accent is gone again) and I run out of breath easily, especially when talking, my lungs make a lou wheeze when I am laying down and if I wake up, that sound makes it all the harder to fall back to sleep (the Prednisone also makes sleep difficult) .
He has said that other than the Prednisone, Bactrim anti-biotic, possible chemo, continuing home nebulizer txs daily, and more extremely painful thoractomies (which means less and less lung eventually) there is nothing more he can do for me.
Basically, I am still continuing to grow these masses and there is no cure. I was told it could start "eating up" my lung tissue. I will not be a candidate for a lung transplant. There is a chance I could evenutally die from this.
My pulmonologist's office is sending my records to Mayo Clinic. He is not sure if there is anything more they can do for me, but he said in my case, it is worth a try.
I have to say I cried when he left the room. It may not be cancer, but it is just as dangerous for me as a cancer. I am very very sad to hear this horrible news. I was hoping it was pneumonia or bronchitis.
It is scarey to think that since I had stopped Prednisone in October 2013, a couple months later, the HSP has come back in both lungs so quickly.
So many unknowns. I get tired of living on cough drops, prednisone, Poise pads because I cough so hard I urinate, constantly running out of breath....
I really don't want to lose my lung tissue little by little like this. I am only 45 years old. Big Sigh.
I am hoping for the best but preparing for the worst. I am glad I bought snowshoes last fall and have been doing that in our big beautiful snowyard(when our extremely harsh and cold winter here in WI this year, warms up enough above 0)bought a small agility set to do with my dog. I have wanted to see the Apostle Islands north of WI. Brian said we can go this summer during 1 of his vacations. I guess I am doing what I can off my bucket list...Unless I win the lottery, I will never have the dream of Christmas lights lighting up like Clark Griswald in National Lampoon's Christmas vacation...dramatic music and all!!! But I will do what I can.
Comments
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I am so very sorry to hear
I am so very sorry to hear this. It just sucks!!! As if our cancer isn't enough?!
A second opinion is always a good idea when you are facing bad news. I have always felt that the more brains you can pick, the better. Sending cyber hugs and prayers for a solution.
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So hard to hear this news
Doesnt have to be cancer to be devistating. Does the cold weather make a difference? I am origionally from WI and I remember those bitter cold winters.. but when spring comes and it is so beautiful, I would forget about it until Oct when it started getting cold again. Just wondering if a warmer dryer climate would help with the breathing.
Hugs,
Carol0 -
Hello fellow snow shoer
These news suck, but I am sure you didn't exactly hand pick them did you?
You are doing all you can snow shoeing and all, I can see that. And I know
you know that you have a lot amazing people rooting for you. So don't be
afraid to reach out and if you feel the need, let it ALL hand out. We will
always be here, listening and caring. No one ever strays too far from this
site. So look at all the sisters that post and know that your fan base is
about twice as much, don't forget the lurkers, like me (:
Enjoy the snow and as an amateur snow shoer, I take any pointers you got.
I missed you,
Ayse
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Carol, the weather doesn'tcamul said:So hard to hear this news
Doesnt have to be cancer to be devistating. Does the cold weather make a difference? I am origionally from WI and I remember those bitter cold winters.. but when spring comes and it is so beautiful, I would forget about it until Oct when it started getting cold again. Just wondering if a warmer dryer climate would help with the breathing.
Hugs,
CarolCarol, the weather doesn't really have anything to do with it. My lungs are making what are essentially masses of inflammed lung tissue that makes the lungs useless. It is called hypersensitiviuty pneumonitis. Basically, something is creating an extreme allergic response in my lungs which destroys the lung's ability to use oxygen. I noticed the cough coming back last October when I stopped the first bout of long term Prednisone. Nothing was showing up on the CT Scan in October.
It is not just a cough from a cold or pneumonia. There are masses growing on my lungs that cause the cough, the hoarse voice, running out of breath. I sure wish it would be weather related...I grew a plum sized mass between Feb. 2013 and July 31st 2013 (the mass wasn't showing on an x-ray in Feb. 2013).
Last year I spent 9-10 months with these symptoms until the thoractomy when they removed the lung mass. I sure wish someone would have referred me to a pulmonologist a lot sooner last year, but hindsight is 2020,right?
Moving is out of the question for me. I have other serious health poblems (like leukairioses on the brain which is casuing me to have early onset dementia and cognitive issues) that would prevent me from living alone. Also, if I moved down south or outwest, who knows what else I would be allergic to in that area?
Thank you for the tips, Carol. I appreciate the extra brain power!
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Keeping you in my thoughts..hope67 said:I am so sorry to hear this
I am sending you huge hugs. Life sometimes just doesn't seem fair. Sending a lot of positive thoughts for you.
Love, Carmen
and prayers. So sorry you have to go through this - keep fighting! Sending you a BIG hug and gentle peace.
much love,
Jenny
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If it makes you feel better,cinnamonsmile said:Carol, the weather doesn't
Carol, the weather doesn't really have anything to do with it. My lungs are making what are essentially masses of inflammed lung tissue that makes the lungs useless. It is called hypersensitiviuty pneumonitis. Basically, something is creating an extreme allergic response in my lungs which destroys the lung's ability to use oxygen. I noticed the cough coming back last October when I stopped the first bout of long term Prednisone. Nothing was showing up on the CT Scan in October.
It is not just a cough from a cold or pneumonia. There are masses growing on my lungs that cause the cough, the hoarse voice, running out of breath. I sure wish it would be weather related...I grew a plum sized mass between Feb. 2013 and July 31st 2013 (the mass wasn't showing on an x-ray in Feb. 2013).
Last year I spent 9-10 months with these symptoms until the thoractomy when they removed the lung mass. I sure wish someone would have referred me to a pulmonologist a lot sooner last year, but hindsight is 2020,right?
Moving is out of the question for me. I have other serious health poblems (like leukairioses on the brain which is casuing me to have early onset dementia and cognitive issues) that would prevent me from living alone. Also, if I moved down south or outwest, who knows what else I would be allergic to in that area?
Thank you for the tips, Carol. I appreciate the extra brain power!
If it makes you feel better, I live in the South and I find the summers are now just brutal for me. I don't think it was a complete coincidence that I had my heart attack in July. Also, I just recovered from a nasty pneumonia in November-lots of bacteria here too.
And here is what happened when I went to the desert, usually a healthy area for lungs, right? When I went to Palm Springs in California some years back, I returned with the worst pneumonia of my life, coccidioidomycosis (Valley Fever). The pulmonologist I saw here in Louisiana was at first baffled because he said my lungs looked like I had coccidioidomycosis (Xray shows white puff balls in your lungs-weird looking), but you could only get that if you lived in desert areas. I had been back just a few days from Palm Springs and my sisters and I had driven through a terrible dust storm leaving the desert. Valley Fever is a fungus found in the soil of desert areas. It doesn't usually cause problems in those with normal immune systems and, probably, most in the West have been exposed. But take a swamp gal and throw her in the desert for a week and her lungs get in big trouble.
My right lung is abnormally small and scarred up from both cancer and the Valley Fever. My left lung is scarred now from recent treatments and pneumonia. I try and walk every day and do what I can to improve circulation to the area, but I have been told by 3 pulmonologists that my lungs will never be normal and I try and avoid sick folks like the plague. And use hand sanitizer constantly. But I do not have the stamina that I did before my lungs were involved.
Cancer sucks!
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So sorry to read thisjennytwist said:Keeping you in my thoughts..
and prayers. So sorry you have to go through this - keep fighting! Sending you a BIG hug and gentle peace.
much love,
Jenny
There are diseases that are every bit as devastating as cancer and we tend to lose sight of that sometimes. I'm so sorry to learn about something new to me and wish it wasn't happening to you. I hope there is something other than thoracotomy available to relieve your symptoms. Will keep you in my thoughts and prayers.
Suzanne
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Positive thoughts are coming your wayDouble Whammy said:So sorry to read this
There are diseases that are every bit as devastating as cancer and we tend to lose sight of that sometimes. I'm so sorry to learn about something new to me and wish it wasn't happening to you. I hope there is something other than thoracotomy available to relieve your symptoms. Will keep you in my thoughts and prayers.
Suzanne
Cinnamone
i am very sorry. I am glad your doctor is sending you to Mayo Clinic. I believe they will provide additional ideas to manage and treat your conditions. Lets look for physical therapy options to improve your lungs function.
Sending positive thoughts your way
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I am also thinking that aNew Flower said:Positive thoughts are coming your way
Cinnamone
i am very sorry. I am glad your doctor is sending you to Mayo Clinic. I believe they will provide additional ideas to manage and treat your conditions. Lets look for physical therapy options to improve your lungs function.
Sending positive thoughts your way
I am also thinking that a biopsy or specimen from the lung could be helpful in determining what you are hypersensitive to? I would see the expert at the Mayo and ask them about another referral to a pulmonologist at Mayo. Try and pick all of the best minds that you can before you give up.
BTW, I went to 3 pulmonologists to get some answers. The third was recommended by my physician colleague whose husband IS a pulmonologist. She said bluntly to me that I needed to see the squirrely pulmonologist in the group, not her husband, because he is brilliant (not socially correct though). I loved him! He was brutally honest (kind of like House) but you could tell he was also a genius. He was the one who told me that I did have cancer in my right lung but it was too distally located to get a specimen. He then called my oncologist and told him that I needed a rib, not a lung biopsy. I went to 2 surgeons before one would do it (risk of more rib fractures and pneumothorax is high). Anyway, to wind this up, he was right. I finally got the correct biopsy and my diagnosis.
I am stubborn, but I wouldn't give up or accept your diagnosis without a lot of back up brains in full agreement. Any pulmonologist worth seeing would welcome a second opinion! Just my take. You know I love you and will support you in your journey absolutely no matter what!!!!
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Feel so badly for you!
Gosh Cinnamonsmile,
I am so sorry for what you are dealing with your lungs. I to think going to Mayo Clinic may be very helpful for a second opinion. Chemo is used for many other condition. I used Methotrexate (which was one of my drugs) when I had chemo back at diagnose for uveitis.
Wish that I could offer something for you but this is really a baffling condition that you have. I hope the 2nd opinion doctors give you something and some hope.
Best to you,
Doris
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Biopsy Done in JulyCypressCynthia said:I am also thinking that a
I am also thinking that a biopsy or specimen from the lung could be helpful in determining what you are hypersensitive to? I would see the expert at the Mayo and ask them about another referral to a pulmonologist at Mayo. Try and pick all of the best minds that you can before you give up.
BTW, I went to 3 pulmonologists to get some answers. The third was recommended by my physician colleague whose husband IS a pulmonologist. She said bluntly to me that I needed to see the squirrely pulmonologist in the group, not her husband, because he is brilliant (not socially correct though). I loved him! He was brutally honest (kind of like House) but you could tell he was also a genius. He was the one who told me that I did have cancer in my right lung but it was too distally located to get a specimen. He then called my oncologist and told him that I needed a rib, not a lung biopsy. I went to 2 surgeons before one would do it (risk of more rib fractures and pneumothorax is high). Anyway, to wind this up, he was right. I finally got the correct biopsy and my diagnosis.
I am stubborn, but I wouldn't give up or accept your diagnosis without a lot of back up brains in full agreement. Any pulmonologist worth seeing would welcome a second opinion! Just my take. You know I love you and will support you in your journey absolutely no matter what!!!!
CC:
On July 31,2013, I had a thoracotomy and they removed a plum sized mass of HSP from my lungs and biopsied it. It came back as HSP.
At my last appt. with my pulmonologist, he said that recently he went more in depth into the path report after the CT Scan showed more growth growing and I had some pneumonia in it as well (I wish he would have done that before but he says he doesn't do that for all patients...just people like me that have more severe, advanced cases of some type of crap). in addition to Prednisone until May, he also put me on Bactrim for a couple months three days a week in case the pneumonia is still there and responds to antibiotics. He basically told me that he is going to try everything he can on me and if Mayo finds more txs for me, he will follow their advice.
Basically this reminds of my journey with the pain clinic. My first pain dr. told me that finding the right medications and pain txs are basically trial and error until we find what works. I think it is the same for cancer txs, too, right? Finding the right dose of rads, chemo and whatever else.
The allergist ran a hypersensitivity pneumonitis test on me, and I didn't show up positive for the most common causes. They just can't test for EVERYTHING in the environment. So far now, it remains a mystery.
Unless the Mayo Clinic has more indepth testing, at this point, it could be ANYTHING in my enviornment. Pulmonologist says we may never know, I just have to do more cleaning, more dusting etc etc, is difficult due tpo my thoractomy pain and nerve damage pain from that, combined with my normal nerve damage pain from the BMX w/SNB & ALND.
I am also hoping that Mayo can maybe put me on some allergy medications (my allergist doesn't have me on anything but Advair diskus and a steroidal nasal spray). To be honest, I don't think he has enough ideas on how to treat me. He really isn't doing me any good, so I will look forward to see what Mayo thinks.
I am not giving up by anymeans. I really didn't "freak out" and get all upset last summer when I was told I had to have a thoractomy and then the HSP diagnoses. I'm still not too terribly worried. I am just rollling with the punches and see what happens. There is nothing I can do about all this crap but see doctors, take meds, get tested, blah, blah blah.
What I can do, is control my thoughts about it and enjoy my little life here.
There is an old story about whirling diverishes a wise woman gave me a pamphlet about years ago. I use those thoughts a lot....let the diverishes whirl around me, but don't let get inside. i wish I still had the pamphlet so I could explain better but its been lost over the years and I no longer know where the wise woman is.
Thank you so much for everyone's support on this.
My cancer,itself, was "only DCIS", but this hypersensitivity pneumonitis is like Stage 4 is it not? No cure, but can go into remission or work at slowing the progression!!
We all just keep keeping on, doing what we can with what we have and have a little fun with life along the way!!!
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I think I found your pamphletcinnamonsmile said:Biopsy Done in July
CC:
On July 31,2013, I had a thoracotomy and they removed a plum sized mass of HSP from my lungs and biopsied it. It came back as HSP.
At my last appt. with my pulmonologist, he said that recently he went more in depth into the path report after the CT Scan showed more growth growing and I had some pneumonia in it as well (I wish he would have done that before but he says he doesn't do that for all patients...just people like me that have more severe, advanced cases of some type of crap). in addition to Prednisone until May, he also put me on Bactrim for a couple months three days a week in case the pneumonia is still there and responds to antibiotics. He basically told me that he is going to try everything he can on me and if Mayo finds more txs for me, he will follow their advice.
Basically this reminds of my journey with the pain clinic. My first pain dr. told me that finding the right medications and pain txs are basically trial and error until we find what works. I think it is the same for cancer txs, too, right? Finding the right dose of rads, chemo and whatever else.
The allergist ran a hypersensitivity pneumonitis test on me, and I didn't show up positive for the most common causes. They just can't test for EVERYTHING in the environment. So far now, it remains a mystery.
Unless the Mayo Clinic has more indepth testing, at this point, it could be ANYTHING in my enviornment. Pulmonologist says we may never know, I just have to do more cleaning, more dusting etc etc, is difficult due tpo my thoractomy pain and nerve damage pain from that, combined with my normal nerve damage pain from the BMX w/SNB & ALND.
I am also hoping that Mayo can maybe put me on some allergy medications (my allergist doesn't have me on anything but Advair diskus and a steroidal nasal spray). To be honest, I don't think he has enough ideas on how to treat me. He really isn't doing me any good, so I will look forward to see what Mayo thinks.
I am not giving up by anymeans. I really didn't "freak out" and get all upset last summer when I was told I had to have a thoractomy and then the HSP diagnoses. I'm still not too terribly worried. I am just rollling with the punches and see what happens. There is nothing I can do about all this crap but see doctors, take meds, get tested, blah, blah blah.
What I can do, is control my thoughts about it and enjoy my little life here.
There is an old story about whirling diverishes a wise woman gave me a pamphlet about years ago. I use those thoughts a lot....let the diverishes whirl around me, but don't let get inside. i wish I still had the pamphlet so I could explain better but its been lost over the years and I no longer know where the wise woman is.
Thank you so much for everyone's support on this.
My cancer,itself, was "only DCIS", but this hypersensitivity pneumonitis is like Stage 4 is it not? No cure, but can go into remission or work at slowing the progression!!
We all just keep keeping on, doing what we can with what we have and have a little fun with life along the way!!!
I think I found your pamphlet and I think it is called, "Acceptance." I had to google around until I found this - you know how I am...lol. Anyway, I hope it is because it is absolutely so beautiful and relevant. It is especially relevant for anyone with uncontrollable issues in their lives. Link: http://tkdjunkiesober.blogspot.com/2006/04/acceptance-by-vincent-p-collins.html
And here is a piece of that pamphlet:
"And the awful menacing future, that unending nightmare of shadowy days and years! Can't even bear to think about it. Well, quit even thinking about it at all. You live only a split second at a time; that's right this minute. You can think of only one thing at a time, do only one thing at a time; you actually live only one breath at a time. So stop living in a tomorrow that may never come, and start living one day at a time -- today. Plan for tomorrow, but live only till bedtime tonight.
In short, that big bogey-man, life, can be cut down to his real size. Life is only this place, this time, and these people right here and now. This you can handle -- at least today.
"But my life is just one problem after another!" Of course it is -- that's life.I don't know how it is with you, but it took me a long time to realize that at least some of these problems were of my own making. For instance, I thought that it was my duty to try to solve other people's problems, arbitrate their disputes, and show them how to live their lives. I was hurt when they rejected my advice. I finally learned that you cannot help people unless they really need help, are willing to be helped, want you to help them, and ask you to help them. Even then, you can only help them to help themselves.
An old Arab, whose tent was pitched next to a company of whirling dervishes was asked, "Don't they bother you?"
"NO!"
"What do you do about them?"
"I just let 'm whirl!" From "Acceptance", by Vincent P. CollinsThank you so much for sharing this. I can't tell you how I needed this reminder today.
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