Wednesday, July 31, 2013

Hive Outbreak Update

I REALLY dislike hives.  They kept me from sleeping for 5 straight days (beginning last Wednesday night).  Honestly, when I look back at those 5 days, I don't even know how got through them...except for God.  He carried me through them.  That was literally the most suffering I have ever had...even worse than the suffering I endured on cancer treatment.  Constant itching...on tons of medication...feeling as if I would stop breathing required a lot of prayer to get through those days.   The extremely itchy, warm hives covered my body....literally, from head to toe.  The only area that wasn't covered in hives on my back was my spine.  I even had them all over my face, my lips swelled and it felt as if my throat was closing up.   So, I lay in bed, unable to sleep over the weekend, wondering if I should go to the emergency room or not.  Everything I read said to go, that the reaction could be anaphylaxis, yet I just wasn't sure what to do.  Finally, on Monday morning, after the 5 days of enduring miserable hives on no sleep and with no improvement (even on the large dose of prednisone and antihistimines prescribed by my oncologist), I decided to head to the nearby ER.  Unfortunately, the ER doctor said that I was doing all of the right stuff and that the hives were likely ideopathic (meaning, no known cause).  Over the weekend, based on research, I had decided to add an H2 inhibitor (antihistimine--pepcid) to the line-up of drugs I was already taking. He agreed with that, but increased my prednisone even more.  Also, my oncologist prescribed a new, stronger antihistimine to take alongside the others.

A poor quality photo, but an example of some hives on my right arm.
Hives can be very frustrating, when you cannot pinpoint the cause.  I requested that my oncologist look into further my suspicion of the outbreak being related to my hormone levels.  After scouring the internet trying to figure out the cause of these things, I came across a lot of other women (who didn't even have cancer), who pointed to hormone levels as the cause of their hive outbreaks.  Many had visited with countless physicians,  who were unable to identify causes.  Yet, when they attempted to implement regimens to try to balance out their hormones, often the hives resolved.  Some found they had estrogen dominance (excess estrogen in their bodies), while others found out they had a rare autoimmune reaction to their own progesterone.  I decided this was worth a shot to look into this further.  I find it funny that this is the second month in a row where I had a hive outbreak.  At almost the same exact time last month (a couple of weeks after beginning Tamoxifen and likely near ovulation), I had a two week outbreak.  Thankfully, it was not as serious as this one.  When they resolved after the two weeks, I assumed they would never be back.  So, my concern is that what if my estrogen levels are crazy high during certain times of the month?  That would not be good for potential cancer recurrence, since my cancer grows with estrogen.  Or, what if I am "allergic" to the progesterone my body is producing?   On Monday, my oncologist referred me to my ob/gyn physician to discuss the issue and request testing, etc.  I had that appointment this morning.  My ob/gyn reluctantly agreed to the testing, but said that it would be difficult to tell at this point if my levels were high (unless they were crazy high).  I guess everyone has a different normal?  She said though she has seen some strange things happen to women with high levels of estrogen.  One patient even had seizures right around ovulation.  So, we tested my levels this morning, and we will test them again around the time of my expected ovulation (if that happens--my body is kind of confused right now with cancer treatment, Tamoxifen, etc.)  One potential solution if the problem is related to my hormone levels will be to give me a monthly injection to keep my ovaries from producing hormones.  It would essentially temporarily push me into menopause.  I am hopeful to find out the results of the testing tomorrow.

So anyway, what is the moral of this story?  I believe there is a sovereign, big plan for everything single thing that happens in our lives.  It gives me extreme peace. If I didn't have this level of extreme miserable hives, then I probably wouldn't have done the extent of research I have done and demanded hormone level testing.  What if we uncover something that changes my treatment regimen?  If I would not have these hives, we would have continued on the regimen of Tamoxifen with no others changes.  Although I can't believe I am now saying this, I can say I am thankful for the miserable hives.  God is showing me and the physicians something through these terrible things.  I have to get this resolved though, because it is difficult to take care of my two precious kiddos on no sleep.  But, I am so thankful that I have been able to get some sleep the past two nights.  The hives situation continues to improve and I now only suffer with a number of hives that I can actually count.  Yet, I am also on a TON of medication, so this is definitely not a long term solution to the problem.  I am thankful that God has helped me to be a good mother and wife through these crazy times on little to no sleep.   I am thankful that we will be figuring out a solution soon.

Now, for the prayer requests:

  • Please pray that we figure out what is going on in my body.  
  • Please pray that I can be weaned off all these medications with no issues and no hives outbreak. 
  • Please pray for guidance for the physicians on how to treat me--for example, do I need to see a new physician expert, such as an endocrinologist?   
  • I am going to start back up on a new brand of Tamoxifen tonight (my oncologist now is thinking I am probably not allergic to Tamoxifen now since they continued to get worse after stopping the drug a week ago).  So, please pray my hives do not get worse from that.   
Thank you so much for your continued prayers!

Love, Heather

1 comment:

  1. Keeping the prayers coming!! Have you tried any kind of oatmeal bath type stuff to alleviate the itching?