Is the Honeymoon Over?

Since getting out of the hospital after a hypertensive crisis six weeks ago, I had been getting quite a bit of relief from a combination of steroids (i.e., hydrocortisone) and anti-histamines.  I was then able to get myself off the steroids and was able to function reasonably well on just anti-histamines.  A daily dose of Zyrtec was able to keep the bulk of my breathing/coughing problems and flushing under control.   Over the past week, I have been finding the Zyrtec isn’t doing the trick anymore – by late afternoon, the Zyrtec wasn’t able to hold the symptoms back very effectively.  So I added in Benedryl at night.  This morning, I woke up and even after taking Benedryl overnight and Zyrtec upon waking today, I am already fire engine red and coughing.   My vision problems are also getting worse – I’ve been having a lot of trouble reading text on my phone for the past few days and this morning I am also having trouble seeing my computer screen clearly (I have an eye appointment this morning, so I will be curious to hear if they have any thoughts on this).

I am very worried about what I am going to do if my temporary fix stops working altogether.

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Why I don’t think I have Cushing’s anymore (and how you can figure out if you are in remission too)

I have been trying to write as many posts as I can that relate to Cushing’s this month, as part of the Cushing’s Blogger Challenge, so here is the next in the series.  I know a question on the minds of a lot of Cushing’s patients post-op is whether they are actually in remission after surgery.  As I discussed the other day in another post, it often can take a long time to figure this out.  Neuroendocrine tumors are a special PITA this way.  The tumors are tiny and soft like toothpaste and it is common for very excellent, experienced surgeons to miss a tumor or part of a tumor during surgery.  And because the tumors spit out hormones they do damage and disrupt the body’s natural hormonal activities for many months, muddying the waters even further.

So how do you know if you are in remission?  The annoying but honest answer is that only time will tell.  In most cases, a lot of time.  Even though I am definitely still sick, I am convinced I don’t have Cushing’s anymore.  I will tell you why I think I am in remission in hopes it will help you figure it out for yourself too.  Every patient is going to be different, but I do think there will be a common theme:  you should see some of your symptoms resolve, gradually and progressively, after surgery.

So, here is what improved for me and the timing of the improvements.

Immediate improvements:

  • My brain fog and vocabulary improved immediately.  As soon as I woke up in my hospital room, I felt like my eyes were fully open for the first time in months.  It hurt to talk much because of the surgery, but I was able to follow the conversation around me.  I felt interested in following the conversation. I felt alert and sharp.
  • I started sleeping at night, every single night.

Improvements in the first six months:

  • My stamina slowly increased (even while tapering off hydrocortisone).  I wasn’t overthrowing foreign governments, but small things that used to be impossible I could now do on a regular basis.  For example, I remember the first time I was able to just play fetch in my living room with my dog.   Not possible with Cushing’s – possible two months post-op.
  • No more ‘roid rage.  I definitely had lots of crying spells post-op (that is going to happen to the best of us after our pituitaries are sliced and diced).  But I was no longer prone to fits of rage.
  • My hair started growing back.  I actually didn’t realize how much hair I had lost until I had big patches of spiky regrowth.
  • I lost some of the puffiness in my face and collarbone area.

Improvements six to twelve months out:

  • My acne disappeared.  This really didn’t start to happen until after the 9 month mark.  I was worried it was never going to happen and it was one of those symptoms that made me worry I still had Cushing’s.  But eventually it did go away.
  • My buffalo hump started to disappear.  I credit part of this to sitting in the sun actively trying to melt it.  Try it and let me know if it works for you too.
  • My blood pressure started to come down.  This has been slow (and my blood pressure still fluctuates a lot).  But there have been improvements.

Things that haven’t improved much

  • I haven’t really lost any weight, although the distribution has changed.  My stomach is smaller, as are my face and neck.  I am sure I have gained a little bit of muscle back. But the weight has certainly not melted off dramatically at the same rate it piled on.  Part of this could be because I have other issues that are causing my body to hold on to every pound for dear life.  But I know from other Cushing’s patients that had smoother recoveries that weight loss often didn’t start to happen for them until they were a couple of years out from surgery.   Don’t shoot the messenger!!
  • I am still really wiped out.  But even the fatigue feels different.  I don’t feel like I am in a daze and hit by a truck all of the time now.  Now, I can do a few things and then I need to rest.  And I don’t need to sleep for four hours straight when I do need a rest during the day – I can get by on 90 minutes.  Still not great, but definitely better.   Again, some of this is probably due to the fact that I am still sick with something, but part of it seems pretty normal for patients that are a year out from pituitary surgery as well.

The main takeaway is that you should watch for gradual changes in symptoms and do routine cortisol and ACTH testing too.  If you don’t see gradual improvement in symptoms – especially in the months after you have tapered off hydrocortisone – you better start testing for Cushing’s in earnest again.  But be patient and keep track of your symptoms over time, keep checking your pituitary and adrenal labs regularly while you recover, and you will figure it out (and hopefully be in remission).

If you value your sanity at all, here are a few things you should avoid doing while trying to figure out if you are in remission:

  • Don’t look for “the sign” you are cured.   There is no higher power that is going to rent a plane with a banner saying “YOU ARE CURED MY CHILD” and send it flying past your hospital window 18 hours after surgery.  It just isn’t that simple, so don’t make yourself crazy trying to look for it.  Focus on recovering from surgery – that is your one and only job in the first few months after surgery.
  • Don’t read my list above and say to yourself “Oh no! I am not sleeping well.  I must still have Cushing’s!”  When you got Cushing’s, it probably didn’t happen in the exact same way as it did for me.  You had slightly different symptoms and test results.  Your tumors and surgery weren’t exactly the same as mine.  Why should your recovery be exactly the same?  Similarly, there was no one symptom that determined your Cushing’s diagnosis and no one symptom will determine if you no longer have it either.
  • Don’t obsess over whether you “crashed” after surgery.  There is a lot of discussion and concern among patients over the importance of having a major crash in cortisol levels after surgery.  This is not a reliable yardstick for recovery for a variety of reasons.  The main one is that most responsible endocrinologists put patients on replacement steroids post-op to keep you from crashing.  Crashing is not safe or enjoyable.  And lots of patients, myself included, never crash.   On the other hand, lots of patients that did crash were not in remission.
  • Don’t obsess over one high cortisol or ACTH reading after surgery.  I had a cortisol level of 24 ten days after surgery.  Was I a little concerned about this?  Yes!  So was the Wizard.  But only a little – it is one piece of information that needs to be placed in the context of all the other information – it took several tries for the lab tech to find a vein that worked (that alone can cause a little spike in cortisol!), I was only 10 days out, I had other signs of remission.

Labs fluctuate, symptoms come and go gradually.  You already know all of this from getting Cushing’s in the first place.  Don’t throw all of this knowledge in the trash after surgery.  You are still dealing with a wide array of symptoms and fluctuating labs.   This disease is full of grey areas.  You were diagnosed with Cushing’s based on a collection of progressive symptoms and labs.  Determining whether you are in remission is no different.  Stay calm and focus on recovering.  The rest will reveal itself in time.

You Miss 100% of the Shots You Don’t Take

The Gallium-68 scan I had last week was read as clean.  This is good news and bad news.  The good news is that I am not full of tumors.  The bad news is that the scan didn’t locate a single tumor in my thymus or anywhere else either.  I know I have said this before, but it is worth saying it again:  I am not Jonesing for a tumor.  Like any normal person, I would definitely prefer NOT having a tumor.  However, I am not a normal healthy person, right now.  I am sick.  And what I don’t want is to be sick with a tumor, with symptoms and evidence that are very suspicious for a tumor, and not be able to find it and get it removed.  Neuroendocrine tumors tend to be very tiny and can be very hard to find.  It is not uncommon for patients to be sick for years until the tumors spread or grow big enough that a monkey can find them.  Thymic tumors can be highly malignant and deadly as well, partly because they often are not found until they are very large or have spread (in part because they often can’t be detected with labwork).  I don’t want to be one of those patients that catches something too late, but my body is not making it easy.

I was really upset about this for one day, and moderately upset about it for a few days after that, but I am over it now.  I told myself going into this that no matter what the scan says, it doesn’t change my symptoms, it doesn’t change the hypertensive crisis I had, it doesn’t change my eventual diagnosis.  It just helps me figure out what is wrong or it doesn’t.  Each test, each doctor visit, each result just gets me closer to figuring this out or it doesn’t.  That is all – no more and no less.   And all I can do is just keep collecting evidence with the knowledge that there will be some dead ends.  Dead ends don’t mean you can stop trying.  As The Great One says, you miss 100% of the shots you don’t take.  So, I am going to keep shooting pucks at the fucking net until we figure this out.

My somatostatin test, I am told, also came back normal.  All I really know is that I had a message from a nurse with the test value and an assurance that the test was fine.  I asked repeatedly for the reference range but I didn’t get it.   I really hate when medical professionals of any kind do that – why not treat me as an intelligent person and just give me all of the information?  It is my blood, my insurance paying for it and my right to have the information!   No matter.  I will track that down the hard way later and I knew this one was a long shot anyway.

The Wizard ordered a bunch of labs two weeks ago and they are back as well.  Those ones are interesting and consistent with what we have been seeing all along.   In case you haven’t read each of my posts and committed them to memory, here is a brief summary of what the Wizard and I have been doing.  Some of the problematic aspects of my labs are very high bone turnover markers (N-telopeptides and Alkaline Phosphatase, including bone-specific measures) and an extremely low TSH (the pituitary hormone that plays a role in regulating thyroid function).  TSH stimulates your thyroid to secrete T4 and T3.  T4 needs to be converted to T3 before it can be used by the body to regulate your metabolism.  If you are hyperthyroid (i.e., your T3 is too high), your TSH should be very low as your pituitary wants to signal to the thyroid to stop spitting out thyroid hormones.  Hyperthyroidism can also cause high bone turnover.  So high bone turnover and a low TSH could be a sign of too much thyroid hormones.

Over the past several months we have been trying several experiments whereby I (1) switched from taking thyroid medications that replaced T3 and T4 to medications that only replace T4 and then (2) lowered the dose of medications to replace T4.  We did this to see whether the resulting reduction in T3 would cause my bone turnover to cease or bring up my TSH.  Well, the outcome of the experiments seem to indicate that even when I am hypothyroid (i.e., I don’t have nearly enough thyroid hormones) as I am now, my bone turnover is still high and my TSH is still abnormally low.  I actually feel really bad on the current dose of thyroid meds and my T3 is very low so I hope my days as a guinea pig are over.  But, it was worth it as I think we have ruled out thyroid issues as the cause of my bone turnover and I hope the Wizard agrees.  Despite the fact I have a lot of bone pain and I am concerned about my bones, this is still pretty low priority for me though given the other things that are going on.

The other interesting finding is that my IGF-1 continues to decline.  The last two readings have been so low that they raise the suspicion I am not able to produce enough growth hormone.  It is not uncommon for patients that had pituitary surgery to lose their ability to make sufficient pituitary hormones post-op as the surgery itself can permanently damage the gland.  Damage to my gland could also be at least partially responsible for my low TSH as well.  Growth hormone is a very pulsatile hormone and so measuring it directly is not informative.  IGF-1 is a more stable hormone that is stimulated by growth hormone and is often measured as a proxy for growth hormone.    There is a specialized set of tests that can be ordered to see whether the pituitary gland, when stimulated appropriately, can produce enough growth hormone.  My understanding is the Wizard orders these tests when a patient’s IGF-1 level is below the 25th percentile for their age group. My last two readings were at the 22nd and now the 17th percentile.  So, I am going to ask him about exploring this when I talk with him next.

Not having enough growth hormone and not having enough thyroid hormones can each make you feel really bad – they both could definitely be reasons I am so exhausted all of the time and why I can’t seem to lose any of my Cushing’s weight too (illness has not impacted my vanity yet).   So, fixing both problems should help with at least some of my symptoms.  The carcinoid issues (e.g., flushing, coughing) are still another matter.

Why is recovery from pituitary surgery so damn slow?

For a lot of Cushing’s patients, the hardest thing to deal with after surgery is uncertainty regarding whether you are actually in remission or not. This might be very difficult for family and friends that never had Cushing’s to really understand.  You had surgery, a tumor was removed – how can you not tell if you are better?

Well, it is just not that simple!   For starters, the pituitary gland has just been sliced up like a loaf of Wonder Bread (literally – in addition to removing tumors that have been located in advance, most surgeons explore the gland during surgery to make sure no other tiny tumors are missed) and it needs time to recover.  If you had knee surgery and the surgeon sliced your knee up in multiple locations, you wouldn’t expect to just pop out of the recovery room and start skipping around.  Recovery from  pituitary surgery is no different…except for the fact that the pituitary gland is the “master gland” controlling a huge variety of your body’s functions.  There are all sorts of neuroendocrine signals that your pituitary gland is supposed to be regulating but it is not able to.   So, post-op, you are emotionally unstable, tired all the time, can’t sleep properly, your whole body hurts….Gee, sounds a lot like Cushing’s!

Recovery also takes a long time because in addition to the fact the pituitary gland needs to heal, it also needs to get back into equilibrium with the organs it controls (e.g., the thyroid, the adrenal glands) and the organ that it is controlled by (the hypothalamus).   The pituitary gland is the central part of a whole set of delicate feedback loops that are responsible for the regulation of many processes necessary for survival and reproduction.  Getting this feedback loop to function normally can take many months.  In many patients, the feedback loop will never work properly again.  Just like with knee surgery, it is often the case that after a recovery period of six months or more you will be able to walk just fine on your damaged knee.  That doesn’t mean you will necessarily be able to run on it ever again.  The pituitary gland is no different.  Surgery is necessary but it is unlikely to restore your gland to it’s pre-damaged state.

One thing that really makes recovery from pituitary surgery (and surgery for Cushing’s in particular) so damn slow is that Cushing’s messed with the hypothalamic-pituitary-adrenal (HPA) axis long before the surgeon started poking around in your head.   In a healthy person (in the following graph), if your cortisol level is too low, the hypothalamus secretes CRH which tells the pituitary gland to secrete ACTH.  In turn, the additional ACTH is a signal to the adrenal gland to spit out more cortisol.  Once enough cortisol has been secreted, the hypothalamus then stops secreting CRH, which signals the pituitary to stop secreting ACTH, which signals to the adrenal gland to stop secreting cortisol too.  This process of adjustment and readjustment occurs in a seamless and continuous fashion in a healthy person.

Screen Shot 2015-04-23 at 9.57.44 AM

In a person with an ACTH-secreting tumor, this feedback loop gets hijacked by the tumor.  No matter what signals the pituitary receives from the hypothalamus, the tumor is going to continue to spit out ACTH whenever it feels like it.  In response, the adrenal gland will continue to spit out cortisol.  The adrenal gland can’t tell that the signal is from a tumor, all it knows it that it keeps being told to secrete more cortisol.  The hypothalamus tries to stop this process by stopping the secretion of CRH (and likewise the healthy pituitary will stop the secretion of ACTH).  But it doesn’t matter, because the tumor will just keep pumping out ACTH.  The best thing the healthy part of the pituitary can do at this point is basically hibernate, which is what it does.  And the feedback loop is broken.

Screen Shot 2015-04-23 at 9.57.33 AM

After pituitary surgery, the tumor is no longer disrupting the normal HPA feedback loop.  However, the pituitary gland is still sleeping for awhile – both because of the surgery and because the healthy part of the gland stopped producing ACTH after the tumor took over during Cushing’s.  As a result, even though more cortisol is needed, the adrenal glands are not receiving a signal from the pituitary.  And cortisol is needed to sustain life.  Eek!!

Screen Shot 2015-04-23 at 9.57.09 AM

The pituitary needs to be slowly and carefully nudged back into action.  And so, after surgery patients need to replace the cortisol their bodies should be producing on their own until the pituitary wakes up.   This process takes months and months and involves slowly lowering the dose of synthetic cortisol (typically hydrocortisone) little by little to try and force the pituitary to wake up.  The process is painful because to force the pituitary into action it is necessary for cortisol to be too low so that the hypothalamus and the pituitary get the signal they need to get into gear and secrete CRH/ACTH.   And low cortisol feels like the flu and can be dangerous if it gets too low.

Add to all of this mess the fact that Cushing’s did systemic damage to your body.  It destroyed bones and muscles and brain function.  It suppressed your immune system.  It caused you to gain a lot of weight and might have left you with hypertension and diabetes.  These problems don’t just go away overnight.  It takes a lot of time for the body to recover.  If everything goes according to plan, patients are looking at a 9 month to two year recovery period.  And things rarely go according to plan….

The official word from my psychiatrist

After my PCP asked me in no uncertain terms to have my psychiatrist provide a progress report (and after seeing “under-treated depression” all over my PCP’s chart), I made an appointment to see him.

I started seeing a psychiatrist about a year before I suspected I had Cushing’s.  Depression can be caused by Cushing’s and it was one of the first signs of Cushing’s for me.  So, this psychiatrist has actually been treating me longer than anyone through my health adventures over the past three years.

I shared with him my recent correspondence with my PCP and some of my other doctor appointments of late (such as this memorable one).  He was shocked that my Cushing’s diagnosis was being questioned and exclaimed “I watched your body transform in front of my eyes” with outrage.  And he’s right – he did.  I was  depressed, but tiny, when I first started seeing him with sleeping trouble and clear signs of depression.  He watched me struggle through one failed attempt after another to get diagnosed.  He saw my mental and cognitive function improve dramatically after surgery.  He recounted all of this to me and I agreed.

We went through the standard list of questions about my mental state now to verify that in fact I wasn’t depressed.   He confirmed I have zero signs of depression and he thinks it is normal for me to cry in doctor appointments when I keep being told nothing is wrong or that I am not going to be sent for more tests.   He can’t believe this is happening to me again.

He is writing my PCP to tell her that it is his opinion that I am not suffering from depression, that there is some sort of endocrinopathy that needs to be addressed.  And that he thinks I should start receiving my care (with the exception of my care from him) outside of the hospital where I have been receiving care (using the term “care” loosely here of course).  And off the record, he had some other very pointed advice about what I should do with my medical care from this point onwards that I also agree with and will follow but won’t repeat here for his sake.

I told him that I was starting to wonder if there was a secret file on me at this hospital with the word “Munchausen” on it.  He assured me that he has made the Munchausen diagnosis a few times in his decades of practice in psychiatry but that this diagnosis never crossed his mind in my case.

I am going to continue to see him, even though I am not actually receiving any treatment from him at all (he only prescribes meds, he does not conduct therapy and I am currently not on any meds because I don’t need them).  If nothing else, a check-in every three months will ensure that if I do require his services he is up to date on what is going on.  Definitely it is worth seeing him every few months just confirm for myself that at least my psychiatrist doesn’t think I am crazy.

Limbo

I feel bad it took me so long to write this post.  I committed to blogging every day in April as part of a Cushing’s awareness challenge and it has been almost a week since my last post.  I just had to step away for awhile.  It is likely this break only affected me (I know these posts are not that riveting!), and that definitely takes the pressure off.  Nonetheless, I do still feel bad that I didn’t do what I promised.

I had the Gallium-68 scan on Thursday of last week and the trip to Houston and back tired me out. That is a big part of the need to take a break.  The other part is that the period of time I am in limbo, between taking a test and finding out the results of a test, is getting harder and harder as time goes on.  And it is unclear what would be heaven and what would be hell on the other side of limbo.  Heaven would not be a clear scan, as that would leave me sick and without an obvious plan for getting better.  Certainly not a scan saying I have a NET that has spread to my liver or bones or lungs, as that would leave me closer to a diagnosis but not a clear plan for getting better either.  Maybe heaven on the other side of limbo would be one clear, solitary tumor, in an easy to access location.  An imaging report that says “Patient has a neuroendocrine tumor in location X and this tumor can be seen on both the PET scan and the CT scan.”  A tumor in a location where all my symptoms would make sense and all my lab results (positive and negative) would make sense too.  Do I think this is likely to happen, based on my own history and reading about the experiences of other patients?  No.  And really, is this heaven?  This outcome is also not great, as it would also likely mean more tumors in the future.

Getting the Gallium-68 scan and all of these other specialized tests sets in motion a whole pile of emotions I would rather hide from most days.  It is like buying a ticket for a really big roller coaster instead of a run of the mill one.  The highs and lows get much bigger the more specialized the test.  You have to do it – you have to buy the ticket and get on the ride because you want to get better.  And there is some chance the more specialized test will yield a result that allows you to move forward and so even though you try not to, you really get your hopes up.  But if the more specialized test yields a negative result?  It will be all that much harder to get things figured out and the letdown will be devastating.  And so in the meantime, I oscillate between: What if I don’t have a NET? What if something else is wrong?  What could “something else” be?  Is it possible nothing is wrong?   How could nothing be wrong when I feel so awful (and some of my labs and scans DO look abnormal)?  And if there is nothing wrong, if this is just my new life after Cushing’s, am I always going to feel this crappy?  And on and on it goes.

After I finished the scan last Thursday, I was handed a CD with all the images before heading home.  I have been poring over the results obsessively since then.  Studying the areas that light up on the PET scan.  Comparing them with any potential abnormalities on the CT scan.  Comparing all my images to images online from patients that had normal scans and those that were full of tumors.  And I have been convinced, depending on the particular moment you ask me, that my scans are totally normal or really worrisome.  I think I see some things that could be concerning.  But I don’t really know.  And when I get the report, can I trust the report anyway? I have seen so many radiologists misread my scans, even when it was clear ex-post there was a real problem.  I have been torturing a friend of mine who also likes to look at these things (and is pretty good at it) by sending her daily screenshots of different parts of my body on the scans to get her opinion on whether something looks problematic or not. I think it is fair to say neither of us see a tumor the size of a baseball, but we do see more subtle things that may or may not be a problem.  We both definitely agree I am just losing my mind at this point (which we can’t readily identify on the scan either).

So, I am trying to stop looking at the damn CD. I try to remind myself that no matter what the scan says or what the eventual radiology report says, it doesn’t change my current set of labs.  It doesn’t change what has happened to my body.  It doesn’t change how I feel.  It isn’t going to change anything that happens to me today, tomorrow, next week.  It doesn’t change my eventual diagnosis.   It is hard, but I will keep trying to wait this out and maintain some sort of calm and rational perspective.

I have a bunch of results pending this week.  I should get my report from the scan any day now.  I should hear from the geneticist.  I also should receive lab results from the last round of tests I did for the Wizard.  In the meantime, my job is just to squash the internal chatter.  Some moments I am more successful than others.  I will just leave it at that.

Plan D, Part II: Get a Better Look Inside

I am in a bit of a rush today, so this post will be brief.  The second part of my current plan is to try and gather more evidence in terms of imaging.  The Octreoscan I had at the NIH did show an area suspicious for a neuroendocrine tumor (NET) in the anterior mediastinum.  There is some uncertainty about whether the corresponding CT scan of my thymus is normal or not.  Since I feel horrible and thymic NETs tend to be very aggressive in MEN-1 (if that is what I have), I don’t want to just sit and wait to see if there is something there and it spreads/grows.  It doesn’t sound pleasant and it doesn’t sound smart.

You might be asking yourself at this point:  if you really do have a tumor and it is really making you that sick, how can it be that hard to find?  The answer is the following.  NETs are often very tiny – mere millimeters – which is what makes them hard to find.  And often they don’t make you sick because of their size – they make you sick because they spit out hormones.   We have all heard horror stories of someone who feels totally fine, sees their doctor for a routine X-ray or physical exam and finds out by chance they have a big fat tumor that turns out to be cancer.  That’s the image we have in our heads.  Neuroendocrine cancer doesn’t always work like that. Often patients are sick for months or YEARS and some sneaky little tumor causing all this trouble is nowhere to be found.

As the NIH states very clearly in reference to NETs, “from the initial onset of symptoms — including gastrointestinal pain, flushing, diarrhea, and asthma-like wheezing — the average time to proper diagnosis exceeds 5 years.  It is likely that tumors will spread (metastasize) and grow during this time.”

http://www.carcinoid.org/content/nih-clinical-trial-unique-opportunity-carcinoid-net-cancer-state-art-scan

I have no intention of falling into this “5 year” category if I can help it.  So, a few months ago, I started looking into more specialized imaging.  The Octreoscan was considered the “gold standard” for the imaging of neuroendocrine tumors (NETs) in the United States.  However, there are newer scans (well, newer in the US – they have been around in Europe for awhile) that are much better scans that pick up lots of NETs Octreoscans miss.  The scans are called Gallium-68 scans and are referenced in the above link.  They work in roughly the same way as Octreoscans.   A high proportion of NETs have somatostatin receptors on their surface.    During the Gallium-68 scan, you are injected with a radioactive drug (Gallium-68) that binds to these receptors.   Imagine the tumor has a parking lot and the receptors on the tumors are tiny parking spaces.  Getting a Gallium-68 injection is like being injected with little cars that have neon flashing lights.  Now imagine trying to spot a parking lot from a plane at night (that’s a PET scan).  It is hard to see a parking lot filled with regular cars.  However, it might be possible to spot a parking lot filled with neon flashing cars.   Get the picture?

The Gallium-68 scans are only available through clinical trials in the US right now and only in a handful of  locations.   After Plan C fell through, I decided to make getting into a Gallium-68 study a priority.  This plan made sense to me because the Octreoscan does appear to be picking up something (despite the fact so many of the doctors I have seen are discounting it).  If the Octreoscan can find something, hopefully the Gallium-68 scan will too.  Hopefully it will be even more obvious on the Gallium-68 scan. This is going to make it much harder for the next doctor to not take this seriously.  That is the plan.   Often my plans don’t work out as nicely in practice as I think they will in theory, but hopefully this time will be different.   With that plan in mind,  I managed to get myself into a Gallium-68 study in Houston last Thursday.  The scan is TOMORROW.  I have been frantically making travel plans and getting the requisite blood work and paperwork ready to go.  M and I are leaving in a few hours.  I hope to post tomorrow with more details on the scan itself and on if the scan actually found anything.  Like any other kind of scan, the Gallium-68 scan won’t pick up everything through a combination of human error in administering the test, error in reading the scan, lack of somatostatin receptors on the tumor, etc.  I know of lots of patients that have clear biochemical evidence of a NET but even the Gallium-68 scan can’t find it.  But I have to try.