Happy Halloween! How IBRANCE is Like Mushrooms - Update on Me

These mushrooms are called Xylaria Polymorpha - Or commonly known as "Dead Man's Fingers".   I have never run across them personally, but I hope to some day. They are not an edible type of mushroom, but I think they are cool and kind of freaky. 

There are so many types of mushrooms.  Many people have been taught to avoid them, because they are poisonous, but those who adhere to that train of thought are missing out on a whole world of delicious wild mushrooms. It is true though, you have to be careful and be sure you are only eating the right kind...like any other thing.  You don't want to go around consuming any food (or drug) you aren't sure is safe...for you.  Some mushrooms are perfectly yummy and safe for most people and then there are those who react to a certain kind and it makes them sick.  So it is always recommended that you test a small amount first and if after a few hours you are fine, you can proceed with larger amounts. 

There are some mushrooms that are so toxic you learn to just avoid them.  The saying "When in doubt, throw it out" warns if you are not 100% sure what you are eating, DON'T!  There is one mushroom called Chlorophyllum Molybdites that is nicknamed the "vomiter".  If you are unfortunate enough to eat it, in a short time you will learn why it got the nickname...as I believe you will be "vomiting" from both ends for a long miserable time.   

There is another mushroom called "The Destroying Angel"  

If you mistakenly eat these little lovelies, from what I understand they will taste good and you will not know you have made a BIG mistake for 6-8 hours. By then it is too late. After a few hours you will have similar symptoms as other food poisonings and will begin to wonder if it was the mushrooms, but in this case, in that 6-8 hours, the toxins in these mushrooms will have been doing damage that many will not survive. After a bout of terrible gastrointestinal distress, you will feel relief, but the toxins have already done damage to your kidneys and liver and it is too late for doctors to get the toxic materials out of you.  You are left to the ravages of the toxins with little they can do but treat palliatively and hope somehow your body is strong enough to survive and heal.

Because I am totally fascinated with mushrooms right now, I thought I would share that analogy with you in hopes you would think it is interesting.  It is also what I realized was possibly true about the damage done to my body by the Ibrance medication I was taking.  

As I talk to numerous specialists about my condition, I am exasperated at how little they know.  Does it seem arrogant for me to suggest that the nation's top specialists are WRONG?!?  Maybe...but I think they are.  

I went to the University of Utah Pulmonology on October 19th.  The Doctor came in and told me he didn't think my respiratory issues were caused by Ibrance.  Now I am so sure that these issues ARE caused by Ibrance, that when any doctor at this point starts going down some other rabbit hole on this, I get like panicky, anxious, frustrated, desperate...like I just feel like I am in a horror movie screaming  and nobody can hear me.  Like the scene in Knight and Day, when June is trying to explain to her Fireman friend all the crazy stuff that has happened to her and he starts patting her hand, and she is like..."why are you touching my hand" and it is clear he has no clue.   You can see it here...

https://www.youtube.com/watch?v=3JO7SeXB2nI 

 

 Yeah. This is how I have felt for the past 4+ months. 

Back to the U of U Doctor.  He said he didn't think it was caused by Ibrance and that it didn't look like other cases of pneumonitis he had seen before.  In my frustration I began to cry and try to convince him that he is wrong, to no avail.  I asked him what he thought it was and he said he thought it was Non-tuberculosis mycobacteria and that they needed to do another bronchoscopy and a biopsy to be sure.  I mentioned that a bronchoscopy had already been done that ruled out any pathogens in my lungs.  (I mean they tested for dozens of viruses, bacteria, and fungi and there were NONE!)  He felt that maybe they might have missed something and was adamant that was the direction he was going to go.  He told me to be sure he would meet with a panel of highly experienced Interstitial Lung Disease specialists the following week and would get back to me on their opinions.  I asked him if he had ever seen a case of "Ibrance induced pneumonitis".  He indicated that he had seen one.  (That little bit on his resume didn't impress me...just sayin)

A few hours later I visited with an Oncologist at the Huntsman Center.  She emphasized that this Pulmonologist was probably right and that I should follow his directions about getting another bronchoscopy and biopsy.  She told me that my symptoms should have cleared up when I stopped taking the Ibrance, which is why she didn't believe this was caused by Ibrance.  I asked her if she had ever seen a case of "Ibrance induced pneumonitis".  She said "I think, I might have seen one."  Needless to say, that amount of experience did not impress me either". 

I left the U of U and the Huntsman Cancer Center discouraged and second guessing myself...but not much.  I mean, I am pretty certain what caused this, but again, who am I to second guess the nation's top doctors?  

I went back to St George to talk to my Oncologist and ask his opinion about the new suggestion of Non-Tuburculosis Micobacteria and he was on board with it.  Because, although he has never seen a case of "Ibrance induced Pneumonitis" he is also thinking that is not what I have. (Because the symptoms should have gone away when I stopped taking the Ibrance back in July) 

Moving ahead to last Wednesday. The Panel of ILD doctors have all convened and they have discussed my case.  U of U pulmonologist calls and tells me he no longer thinks my symptoms are due to non-tuburculosis micobacteria, but they all agree it doesn't look like pneumonitis either.  They now want to do a lung biopsy and bronchoscopy because they think it might be cancer.  I told him that the last bronchoscopy ruled out any malignant cells in my lungs, and he told me he wants to do it again, because he thinks they might have missed something.  I asked him if my symptoms match the symptoms he would expect of someone with the type of cancer he was talking about. He said no, not really, but they still want to do the procedure to find out.  I think he is wrong, I think THEY are wrong, but who am I to argue with, now a panel of, the nation's top doctors? So I am scheduled to have a bronchoscopy and biopsy of my lungs on Wednesday at the U of U.

One other little thing that popped up last week.  I noticed my right foot started to hurt a lot last week.  It hurt for a couple of days to where I could barely walk on it, then one evening, after 2 days of pain, half of my foot went numb...like from the two small toes down to my heel.  I almost laughed hysterically at the ridiculousness of having one more thing.  I was actually hesitant to get it checked out, because I must seem like a doctor hopping drug seeker to everybody by now, but the next day I went to my podiatrist who was baffled by why my foot would be numb and hurting.  After a little discussion he suggested I get an ultrasound to be sure there was no blood clot.  

Long story short...there was indeed a blood clot.  Vein doctor was concerned enough to put me on blood thinners right away and get me a High Resolution CT scan to be sure I didn't have anything life threatening..considering the troubles I am having with my lungs and heart.  Fortunately nothing serious was found and I am left to work it out with a blood clot in my foot for now.  

One thing they did find is that I now have 3 healed broken ribs.  I wasn't surprised by that, because my chest hurt so much and I could feel my ribs moving at one time.  What surprised me is that with all the x-rays and CT scans, that last one was the first to mention broken ribs.  How have they missed 3 broken ribs all this time?????  I was in so much pain, and yet they never even saw it.  Is it any wonder I don't trust doctors?

I am now on a blood thinner with orders not to hurt myself, or bleed.  For some of you that might not be a problem, but as my husband knows, not bleeding, for me, is a challenge.  Haha!  It also complicates having a lung biopsy a little bit.  But I have been reconsidering having that procedure done and I think I will cancel it and just wait a bit.  

Because I have to wrap up my thesis...Back to mushrooms.  I am like 95% sure my condition is "Ibrance induced pneumonitis".  I have done many hours of research on the subject and have interacted with real people experiencing the same symptoms as I am as well as read numerous case studies.  I think my symptoms don't look anything like the cancer I know he is thinking I might have...as I have also researched that for hours. (lymphangitic carcinomatosis) I am extremely frustrated, and have about lost all hope that they will ever diagnose, much less treat it correctly. 

For the most part, I see improvements over the past few months.  Some days feel better, some days are miserable.  But the good days are better and the bad days ...well maybe they are not as bad sometimes.  Yesterday was bad and I was feeling very dark and unhappy.  Sometimes I feel so hopeless that this is going to get better that I just cry.  Then I will take something to knock myself out, get a good night sleep (upright as always) and wake up feeling hopeful again. Mornings are usually the best and things get hard as the day progresses.

This is truly miserable, but I realized something yesterday.  Something I have realized before to some degree, but needed reminding of...something the doctors don't understand.  They don't have to get the diagnosis right for me to heal.  I believe right now I am kind of like someone who has been poisoned by a Destroying Angel Mushroom.  Just because I stop eating the mushroom, doesn't mean I will just get better.  The damage is done, we cannot change that.  I need to rest...a lot, and I need doctors who will help me heal.  I need to strengthen my body with whatever it takes for it to heal. It seems that my body is strong, my heart which is in a constant state of tachycardia seems to be strong enough to handle that, my liver and kidneys and other vital organs seems strong enough to handle the onslaught of meds and toxins they have been given, my mind  might be able to last little longer (questionable).  

That is where my focus is  going to be right now.  I do have appointments next month with the Mayo Clinic in Phoenix.  I am not holding my breath... **Chortle**