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I've been lurking for awhile....

What if it's the C word....

posted 1 year ago in Wellness
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    Sugar bee
    TinyTina    June 2012   Albany, NY

    Hi Bees,

    I know I haven't been posting for very long (I feel like I'm cheating because I'm still a waiting bee!), but I have been lurking for a while and I'm still amazed by how supportive everyone here is. I'm having a rough morning and needed to just let it out, so here goes....

    My SO has always had digestive issues, but we always just chalked it up to unhealthy eating and possibly IBS. We've made some healthy changes to our diets in the past few months and have started exercising regularly (something we never did in all the 5 years we've been together). About a month ago my SO was complaining that his stomach was bothering him a bit more than usual. We thought maybe his stomach was adjusting to the new diet/exercise.. but it really didn't add up. Eventually he went to the GI who did some bloodwork and advised he stay away from "gassy" foods. Well he took that advice to heart and cut out almost everything. Exactly a week ago the doc said that the bloodwork showed high levels of eosinophil (usually caused by a food allergy or a parasite). On Tuesday he went to an allergist - no food allergies. Yesterday he had more bloodwork done. Still with the high levels of eos (just for some perspective... anything higher than 8% is abnormal, his was 34%!)

    The next step is testing for a parasite, and if nothing shows up, well... the doc said that in very rare cases high eos levels can be caused by leukemia or hodgkins. Even though the chances are so slim, it's hard NOT to think about it. I don't know how he would have gotten a parasite, we live together and eat the same foods. We always eat the same things for dinner, etc and I have felt fine! The poor kid has been basically living off of turkey and some fruits for like 2 weeks because everything upsets his stomach. He's lost a TON of weight (he was already an average weight to begin with) and I'm just crazy worried about him. The test results for the parasite won't be in for over a week. We are both just praying - as stupid as it sounds - that it IS a parasite, because then we can get it taken care of move on. Just last week, I was saying that I hope it's just a food allergy so we can cut it out of his diet and move on. That's been ruled out and now I'm hoping it's a parasite so we don't move on to the next thing. Again, the doc said it's rare, but because the levels of eos are so high it is a cause for concern.

    How am I suppose to NOT freak out about this? I just think about having to wait another week for the results and it makes me cringe. Right now I just keep telling myself to take it one day at a time and that it's just a parasitic infection and nothing more. But hell, we thought for sure it was just a food allergy and it's not. Ugh, sorry for such an incredibly long post, but we decided that we're not going to freak our friends/family out until we actually know what's wrong. In the meantime, I am stuck freaking out with the voices in my head since I can't tell anyone what's going on... Thank you, thank you, thank you for listening....

     
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    jennifer_espos    June 18, 2010   NYC

    Oh sweety so glad you have an outlet to come to.  I understand why you don't want to go to your family and friends just yet.  And I can only imagine how freaked out I'd be.  I think that's normal so I don't necessarily think its possible to stop that.  But just try your hardest to remain positive.  As the doctor said, its a rare thing for this to be cancerous.  So hopefully it is a parasite.  It can happen!  Maybe it was something he ate while he wasn't with you.  Or  maybe it was something you guys both had and he was just the unlucky one.  This next week is probably going to be torturous for you both, but he's lucky to have someone so supportive in his corner!  Please keep us posted. 

     
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    Miss Chapstick    September 2009  

    Oh my gosh, hun ... I'm so sorry! There's is NOTHING worse than waiting for test results. I know because it took my doctors three months to diagnose what they thought was a benign lump on my thyroid as cancer. I would sometimes wait 10 days for results, and it drove me crazy. So I honestly know how you feel.

    Just know that whatever it is, he will most definitely be fine. If it's a parasite, you can get rid of it. If it's cancer, they have SO many treatments out there right now that his chances of surviving are incredibly high. I have a coworker who had stage III lymphoma, and he's going through a stem cell transplant right now, and the doctors are beyond optimistic that he'll be just fine. It's a battle, but one you can live through.

    I'm sending happy thoughts your way! I really am. You guys will get through this. In the meantime, stay busy. It helps.

    10 bucks says it's just a parasite! :)

     
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    Miss Snowflake    August 8, 2009   Columbia, MO

    Oh, this thread is freaking me out... my DH also has had digestive issues since puberty, but he flat out refuses to go see a doctor about it. I forced him to go once, and the doctor didn't do anything! All she did was tell him not to eat before bed and take a Zantac every morning. Well, that made things worse - he wasn't sleeping (who can sleep on an empty stomach?) and the Zantac was actually GIVING him heartburn, which he never had to begin with! So I don't blame him for not going back. :(

    But now I'm thinking about every possible thing that could be wrong! Maybe he just needs to go see a different doc... but his insurance is so crappy that sometimes I feel like we can't even afford it.

    I wish you the best for you and your SO! I know waiting for test results can be sooo hard (just check out the babies board! LOL).

     
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    Jenn23    April 17, 2010   Philly suburbs

    Hang in there! I hope you get the diagnosis soon and I hope everything works out. I can't imagine waiting for the tests! Sorry you are going thru this!!

     
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    caszos    June 2010   Florida

    It sounds like you have some doctors that are taking this issue seriously.  You need to keep going with the testing until you figure out what could be causing this issue. 

    As you said, try to be patient, yet be your own advocate.  If they promised you results in a week, make sure you get them in a week.  Take things one day at a time. 

    Why did they think that it may be hodgkins?  Next time he has bloodwork done ask that they do a SED rate as well (you have to request it in the work up).  I finished treatments for hodgkins 3 years ago :)

     
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    bobrien74    February 26, 2011   Las Vegas

    Its hard not to freak out.  The important thing though is that he is actively seeking an answer rather than ignoring it.  That is a positive step in the right dirction.  Wishing you guys the best!

     
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    so_said_ellie       Sydney

    I hope it will be ok!! There are a few things that can cause elevations in eosinophils though, and I would have thought that if the dr thought cancer/other nasty thing could be the cause, they would have starting running those tests already instead of waiting for confirmation that it's not a parasite infection.

    How did the allergist test for food sensitivities, do you know?

    Good luck, waiting for test results can be nerve wracking, but regardless of the outcome, things will be ok!!!

     
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    MissAsB    June 6, 2009   Married in CO, Living in AL

    I know it's tough but your doctors sound like they are on top of it.  They probably just said that because it is a chance, but it sounds like it really is rare.  I'm sure that he will be okay, but on the off chance he isn't, just find the best doctors to take care of him and it will all work out.

     
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    brittanymichelle    June 5, 2010   Cheyenne, Wy

    that wait seems to take forever... i hope that it is nothing big and that recovers quickly! best wishes

     
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    fitzly      

    You are in our thoughts. Please let us know that your SO is ok, as I am sure he will be. It is so wonderful that he went to a doctor and is catching this early.

     
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    rlsulli1598@verizon.net       oregon

    My prayers are with the two of you.  Keep us posted. 

     
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    lioness    April 2, 2011   Atlanta

    This is a tough issue for some people to talk about, so I'm sorry if I'm bringing up something sensitive.  When women have depression, we often feel more sad/lethargic/uninterested/etc.  When men have depression, it more frequently presents itself as a stomach problem.  They may not even know they're depressed!  My friend went through something similar last year...he was working at a law firm that was stressing him out a lot, and all of a sudden he started having all of these digestive problems and lost a lot of weight.  They ran a lot of scary (and expensive) tests...and it was pretty awful.  Then one doctor suggested that it could be depression...Serotonin, a neurotransmitter that gets off balance with depression, is regulated in the GI system, so serotonin imbalance can present as stomach problems.  It still wasn't easy to deal with, but it was a lot less scary than some other things they had been talking about!  Might be something to look into.  I hope everything works out okay...please keep us posted!

     
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    TinyTina    June 2012   Albany, NY

    Thanks everyone for the kind words... No word yet, we'll probably hear something by the end of the week. I am just taking it day by day, and like @so_said_ellie said if they thought it was serious I am sure they would have done other tests instead of waiting.

    @caszos: I'm not sure why they mentioned hodgkins, but he is going for more bloodwork on Monday, I will be sure to tell him to ask for his SED rate.

    @Miss Snowflake: I'm no doctor, but I have had my own fair share of digestive issues and that just sounds weird that a doc would tell him to do that. Sometimes you have to try out a few different doctors until you find one you like or who can help you. My SO refused to go to the doc for the longest time, but after a lot of badgering on my part he finally went. I wouldn't worry about your hubby though, my SO always had some problems, but the pain had escalated in the past few weeks to a point that he could no longer avoid seeing the doc.

    @juliaelizabeth3: I'm pretty sure that it's not depression for a few reasons... If he was having a serotonin imbalance that was upsetting his stomach would he have high eos levels? The doctor seemed pretty sure that there is something going on that would cause such high levels in his bloodwork. And, we've actually already dealt with this issue before!! A few years ago my SO kept saying he felt dizzy and nauseous and was having heart palpitations.After months of tests, multiple trips to the cardiologist (who kept telling us nothing was wrong), his PCP suggested that he might be suffering from an anxiety disorder. Anyways, fast forward to today and though we are still dealing with it, we are very much aware of his anxiety disorder. Of course, if he didn't already have that history it would deff be something to look into....

    Anyways, I just wanted to thank everyone again for listening and for the kind words. I am sure I will back here on Friday to tell you that it was just a parasite and that we were both worrying for nothing!! :)

     

     
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    Blushing bee
    kimmylyn    November 6, 2010   Boston, MA

    Hi TinyTina... I'm a bigger hypochondriac than I like to admit, and am always in fear of the "C" word... not only for myself but for loved ones, so I totally get why you are anxious and worried.

    Because of my hypochondria (ha), I end up watching a lot of medical shows based on different diseases... one of which is called "monsters inside me" which is all about people that have parasitic infections. One of the things I've learned is that parasites can hide out in your body and "hibernate" for long periods of time (years, even) before they become active and start causing symptoms. So even though you both typically eat the same thing each day, he may have had this parasite for a long time, without it being active.

    Also, whenever I get freaked out about the possibility of something being cancer (trust me, I can take any symptom and find some type of cancer to fit it), my FI always makes me say the mantra, "don't worry about cancer until its cancer". Oddly enough, thinking that thought makes me calm down a bit. There isn't reason to worry about cancer unless its officially diagnosed... and that's a bridge to cross if you ever get to it.

     

    So... deep breath. And don't worry about cancer until it's cancer.

     
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    lioness    April 2, 2011   Atlanta

    Oh I'm so glad it was just a parasite!  Thanks for the update :)

     
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    ErinMarguerite    July 2009   DC Area

    @juliaelizabeth3: TinyTrina's last post said they have no word yet, but they should hear by the end of the week.

    @TinyTina: Good luck.  I'll keep you in my thoughts.  I hope everything turns out ok!

     
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    lioness    April 2, 2011   Atlanta

    Wow you can tell how busy my day was!  Thanks for pointing that out, @ErinMarguerite!  I misread...still crossing my fingers for you, of course :)

     
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    lulu mae    January 8, 2012   NY

    I totally understand your anxiety about this!!! Is there another doctor you can take him to?? Just to get a second opinion?? Sometime other doctors come up with other ideas of what they think it might be. Also, if they think there is a chance it it might be the other things... is there a test he can get done that will specifically test for that?? I would try for a second opinion if that is an option!!!

     
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    Miss Hunky    July 10, 2010  

    I'm so sorry to hear this, you're right, something that could be super serious is always hard not to think about! You both are in my prayers, I hope everything is okay!

     
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    TinyTina    June 2012   Albany, NY

    Well after a whole bunch of tests, they haven't found a parasite.... he's still feeling under the weather, although he does seem to be eating more which is good. Now we are going on vacation with my family for a week and have to wait until we get back for him to get MORE bloodwork to see if his eos levels have gone down and as the dr said to discuss "next steps". WHAT DOES THAT MEAN? Why does he have to be so cryptic!?!?! I kind of want SO to get a second opinion because his test results came in on Monday and the doctor didn't call him back until today... I'm sure he's busy and I don't know what his schedule is like, but making us wait a whole week for a phone call was very aggravating.

    I am just so frustrated... this has been dragging on for like 3 weeks... It shouldn't take this long!

     
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    Goodie    September 10, 2011   Midwest

    Hoping for a good update!

     
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    caszos    June 2010   Florida

    @TinyTina: It sounds like you should look at other Drs.  Waiting that long to give you results can be very aggrivating.  I think looking at "next steps" may actually be a good thing.  It shows that the Dr isn't giving up yet and wants to work with you.  It can actually be hard to find Dr's like this! 

     

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