So many new issues..... Headaches, ear, nausea, change of taste

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LuvMyFam
LuvMyFam Member Posts: 101
edited October 2014 in Not Diagnosed With a Recurrence or Metastases but Concerned

Hello everyone,  I have mostly been a lurker, but have gained so much comfort from everyone's posts and experiences.

I have had several issue since being diagnosed in 2012, and now I am adding to them again.  In December 2013, I started feeling poorly again, with headaches, low-grade temperatures (in the 99's), chest wall pain, fatigue, and just general malaise.  It turned out that my implant that had been put in in October 2013, was infected.  We didn't find this out until after MRI's, CT scans, cellulitis, two inpatient hospital stays, a long round of steroids and finally surgery.

I was on chemo pause from July 2012-August 2014.  When my period came back, it was very heavy and sent me to the emergency room because I was bleeding so heavily.  They ran blood work and everything was normal, but my Onc was concerned about the heavy bleeding on Tamoxifen, so she had me start Lupron shots to throw me into regular menopause, thinking she would then move me to an AI.  I felt a little uncomfortable on Lupron, with achy joints, but nothing too bad.

After my 2nd Lupron shot on October 6th, my joints were so achy that I couldn't bend my fingers.  I had headaches and felt bad.  All during this time, my ear has been muffled, but now it is getting worse.  Also, I've been having on and off headaches and pains, so I've been on a maintenance dose of Methadone, for a couple of months.  Last Monday (October 13th), I called my Onc and she put me on the steroid (Dexamethasone) to help with the achy joints.  While this helped with the achy joints, other things have been progressively getting worse.  I have headaches that have put me on around the clock Morphine, maintenance Methadone, Zofran and Gabapentin.  I have been in bed since Friday.  Also, since Friday, my sense of taste has suddenly changed.  Everything tastes sickeningly sweet.  There is a horrible after-taste to everything.  The only way I can drink water is to make it ultra bitter by adding powdered Branch Chained Amino Acids.  Also, I love coffee, but it's only good black with baking cocoa powder, added.  So weird and difficult to eat or drink anything.  I have lost 6 pounds since then, which I found out at the doctor today.

I had also been having left clavicle pain, so I got a shoulder X-ray today, too.  My onc wants to just wait and see how the next two weeks go.  She upped my medicines today to help with the pain, but I still can't eat, and I am spending most of the day in bed, which is not going to work much longer because I still have young children.  My Onc is at a complete loss on the hearing/ear issues and taste problems.  If I'm still feeling this way in two weeks, or worse next week, she wants to repeat the Brain MRI and Lumbar Puncture with fear of mets to the brain, of course.

Has anyone ever heard of anything like this?  Can you think of any other place I can look?  Anywhere else I can get information?  I appreciate your time any any information you can give me.  I am at such a loss and am scared, worried and don't know what to do.  I just want this all to be over and it seems like every time I turn around, there is something wrong again.  Please help!

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  • dlb823
    dlb823 Member Posts: 9,430
    edited October 2014

    Luvmyfam, I'm not a doctor, but I think I would look first to the multiple drugs you're on, either for possibly uncommon SEs, or for drug interactions.  It also sounds like your hormones have been pretty scrambled, and going from very excessive bleeding to Lupron shots could also be factoring into some of your problems, like the headaches.  And the taste thing could be some sort of mineral deficiency.  And all that caffeine-rich cocoa could also be adding to your headaches.

    In reading through your account, I keep thinking two things -- (1) These problems may not be related to each other or to a single cause; and (2) We all had weird things happen to our bodies prior to bc, and not everything that happens post-bc will be related to bc.  

    When you say your onc is at complete loss for some of these issues, has she referred you to other specialists -- an ear doc, for example?

    Just my thoughts as I read your post...  (((Hugs))) and sure hope you get some answers!  I personally think that constantly worrying about mets, as you understandably are doing now, can probably exacerbate your symptoms.  So hopefully you have a team of docs who will figure out what's going on.  But I would personally question possible drug interactions and nutrient deficiencies as causing at least some of your problems.     Deanna

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  • LuvMyFam
    LuvMyFam Member Posts: 101
    edited October 2014

    Deanna,

    Thank you so much for replying.  I totally agree with everything.  My hormones have been thrown everywhere and now my doctors are trying to counteract everything with drugs, seemingly masking all my symptoms, if not at the very least, confusing them.

    My husband and I have been eating really healthy, so we are changing my diet again to see if that changes my headache pattern.  I, too, don't want to overdo the caffeine, or anything else for that matter!

    We'll see what is going on and get it figured out.  Our bodies are all different, and like you said, were different even before the darned BC.

    Thank you for your input.

    Erica

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