Cancer Update, Femara and Gastro Issues

Hello All;

I've been out of sight for a few months.  Just to catch you up, suddenly hospitalized in August for uncontrolled bleeding.  In and out (mostly in 95%) for the next six weeks while they try to figure out what's going on and keep replacing the blood I kept losing.  Had over 18 units of blood during that time (I stopped counting at #18).  Got to know a speculum reaaaaaal well as every doctor just had to have their own "look-see."  (Sorry if that's TMI or crude).  Result was endometrial cancer (don't have the formal name in front of me) which had spread to one groin lymph node.  Bleeding was from the cancer cells reacting to the anticoagulant I was started back on a week earlier due to a sudden, unprovoked clot that we now know was caused by . . . . surprise . . . the cancer.  No surgery initially due to clots popping up every other day. so started immediately on chemo to have surgery after 6 treatments.  Had the 6th at the beginning of February and full hysterectomy as well as dissection of the groin lymph node.  Requested an umbilical hernia repaid in addition, which was good because they discovered a new tumor at the belly button which hadn't shown on the latest CT scan.  Pathology confirmed that it had metastacized (SP?) from the uterus mass.  Anywhooo, they were able to get everything and confirmed I was cancer-free as of the surgery.  I started on Femara for the next five years to lessen my chances of recurrence, which brings me to my question:

I need to hear from other DSr's who have taken or are taking Femara long-term.  I need to know if you've had any gastro-intestinal issues with it and what you did to resolve.  I ask because I started on it immediately, taking 2.5mg daily.  I was told that of the listed possible side-effects, the only ones people have experienced so far have been pain and soreness similar to flu symptoms and possibly accentuating menopausal symptoms.  I've not experienced any of that, but starting on Day 8, my stomach went crazy.  Horrendous loud gurggling, grumbling and bubbling you could hear from across the room, stomach cramps, bloating and terrible, painful gas that wouldn't pass.  This went on for 12 hours and nothing I did helped.  By morning (after 12 hours of no food, coincidence?  I think not.)  I felt fine, no grumbling, bloating, gas, nothing.  At first I didn't associate it with the new medicine, thought I'd eaten something that was bad or something.  By day 3 of the exact same episode at the exact same time happening, I felt surely, it must be related to the Femara.  I initially tried to solve it with Peppermint tea, which did the trick, but since it's an antispasmodic, also caused my bowels to become sluggish, so that was not a good daily solution.

I spoke to my oncologist and let him know all of this and that I would gladly take any other side-effects, but this I couldn't handle, especially having already experienced an anal fissure a couple of years ago.  This episode was setting the stage for another one.  We decided for me to take a few days off of it and start again on that Monday, but only taking it every other day and ease into every day and see how the symptoms do.  Long story short, I've spent the last three weeks graduating to every day dosing and the symptoms have come back, the only difference is it developed gradually just like I was gradually progressing to daily dosing.  I switched from taking it in the afternoon on an empty stomach to taking in the morning with breakfast and that's only changed when the grumbling starts which is about 16-18 hours after I take the dose, regularly.  So now, instead of getting it in the afternoon, the nights have become terrible disturbing my sleep.  I've trying everything to help, apple cider vinegar, mylanta gas, rolaids (No, this is not instead of my calcium citrate, it is solely to address the gastro upset from the medicine) . . . I'm at a loss.  I've searched the internet and I can't find anyone having gastro issues on Femara and what they did to manage it.  It occurred to me (finally, yeah . . . I know) that it may be because of my altered system that this is the side effect that I'm getting so I wanted to ask the question here.  I'm stepping up my pro-biotics to see if that helps.  Has anyone else experienced this and, if so, what did you do to help?  I'm open to any and all suggestions.  I have to take this for at least five years.  We've already discussed the other med's and this is the best chance to fight-off recurrence.  I appreciate any feedback, folks.  Thanks.

Ask for some prescription probiotics.  There are some wonderful ones out there!  Just keep on trying new things!  If the peppermint tea worked, could you add more fat?  Good luck!!!

wonder if there is any wheat products or sugar In The coating of the tablet/capsule? This is the kind of gas I get when I eat wheat/ sugar. Do you eat any wheat or sugar?

Yes I do sometimes eat wheat and sugar.   It gives me gas, but nothing like this.  This rumbling results more in diarrhea, which I don't normally have.   Calcium doesn't even affect it and I always have to use miralax with the calcium.  That does give me a thought to look into what the coating is.  It may be irritating me.

The peppermint tea worked but as I mentioned,  it is an antispasmodic which, essentially sedates the muscles so you don't feel the discomfort.   Problem is, it was doing the same thing to the colon muscles.   Fat, oil or even miralax wasn't helping because it was the muscles not being able to move things along.

Just found somethimg that may be significant.  "Some brands contain lactose.   Carefully consider use in patients with hereditary galactose intolerance, severe lactase deficiency or glucose galactose malabsorption."

If I'm understanding that,  maybe something like lactaid may help.   I know many of us deal with lactose intolerance.   What  do you think?  I suppose it's worth a shot in adfition to upping my probiotics.

I would also recommend a good probiotic. You can go to a good health food store and they carry very high quality probiotics. I always get mine from the cooler. Probiotics help to restore the intestinal flora that is destroyed from the chemo and the drugs that kill the good and the bad in your body. 

No help her - just wishing you the best. I hope you find the right combination to ease the side effects.

Mystery solved.  It was the lactose.  I am lactose intolerant and have been for years.  I've never had major issues with it beyond being a little more gassy after indulging in a cup of ice cream.  I've used Lactaid milk for years before switching to Almond milk and, based on my reading, there's not enough lactose in hard cheeses like swiss and cheddar, which are my favorites,  to cause a problem.  But these little pills each have 61.5mg of lactose in'em . . . . GUITLY AS CHARGED!!!!!!!  So, last week we switched me to Aromasin as it as no lactose, but on day 5 it cause a severe attack of vertigo, bad enough that I couldn't get out of bed and had to go to the ER.  They gave me a low-dose of valium which helped, but I had also stopped taking the medicine.

My oncologist and I have agreed that I can go back on the Femara and manage the lactose intolerance with Lactaid pills and upping my pro-biotics.  I had started using the Primal Ultra Defense, 1 capsule twice a day, which is stronger than my prior one and taking two lactaid pills at the same time I took the medicine.  That seemed to help a lot so I'm gonna work with that.  I've never experienced vertigo and the loss of faculty and, almost, consciousness was truly frightening.

So, there's my update.

Sorry about your ongoing issues. I hope things improve soon.