Side Effects of Chemo Outweighing Benefits?

Hello all!  It's been an eventful  two months on the cancer front.  I'm so thankful that (1) Danny is no longer working at the accounting firm, and (2) It is Summer so our family's schedule is dialed back quite a bit from its usual craziness.  More on both of these later on.

After my last "so far, so good" post, I began experiencing symptoms of peripheral neuropathy.  It started out as numbness in the hands and feet.  But then it began progressing, and quickly!  The numbness started creeping up my legs and up my arms.  Oddly, I noticed that my slip-on slippers were coming off around the house, without my knowledge.  And I was beginning to drop things if I wasn't paying close attention to the act of holding onto the object.  I reported the symptoms, and my concern, to Dr. P and the nurses.  The standard medical professional question regarding neuropathy, "Are you having difficulty buttoning your shirts?" was asked by a few different nurses.  (I, too, learned this in nursing school.  I guess that was the extent of our neuropathy evaluation lesson!)  No, no trouble there.  I could still button my clothes.  But otherwise, the seemingly quick progression of symptoms was quite disconcerting and worrisome to me.

Dr. P recommended that I take Neurontin, starting just at bedtime then gradually increasing until the dose reached three times a day.  She said that Neurontin 100mg at bedtime that Dr. Coscio had prescribed months earlier for what I now know was barely perceptible neuropathy symptoms was nowhere near a therapeutic dose.  Expectedly, that dose didn't seem to help at all back then, so I had stopped taking it.  With the new plan, the problem arose when I was unable to get past twice a day.  It made me so tired and groggy!  I simply couldn't imagine adding another dose.  Additionally, it didn't appear to be working at all on the neuropathy symptoms.  Then again I had yet to get up to the recommended therapeutic dose, so who could really say?   Since I was distressed and as she considered the side effects, Dr. P recommended that I be seen by an MDA neurologist, since they see lots of patients who have chemotherapy-induced peripheral neuropathy.  She also prescribed a different drug:  Lyrica, three times a day.  This, too, didn't seem to help.  In fact, the symptoms were much, much worse, even though I tolerated the Lyrica much better than the Neurontin.  Taking it three times a day, I was a little tired but seemed to have a clearer head than when on Neurontin.

Let me clarify what I meant by the symptoms being "much, much worse."  This is basically where I am now.  I have numbness and tingling in the hands/arms and feet/legs.  I also have weakness.  I have difficulty walking distances such as from the parking lot to the grocery store.  I'm having trouble starting my car, brushing my teeth, wiping myself(!), turning magazine pages, and holding onto things.  I can't do or open anything that requires finger strength and/or coordination -- this is probably one of those things that you can't imagine or comprehend the breadth of until it's happening to you.  I can't put on earrings or operate necklaces.  I have a lot of trouble picking up pills and also Q-tips.  My keyboarding has slowed to a crawl and my accuracy sucks since I can't feel or coordinate my fingers.  Weirdly, sometimes my middle finger gets bent up under things, such as a shopping cart handle or steering wheel, and I don't even realize it until I see it or it causes pain.  And alas, I have a LOT of difficulty (and sometimes find it impossible and require assistance) buttoning my tops and pants/shorts.  I can finally answer "yes" to the most popular question!  :)  At least I still have a sense of humor!  (sometimes)

Last weekend, I finally reached my breaking point.  I was making pancakes Saturday morning, and I was unable to flip the pancakes in a coordinated fashion.  They weren't landing where I wanted them to!  I'm normally very good at this (one of my many trivial, unimportant talents!)  Then, I couldn't hold on to my fork while eating the pancakes!  It fell from my hands once, then I held it, but it was more like it was just resting on my fingers as opposed to being held by them.  I CRIED!  I know, I know, it seems such a trivial thing to cry over.  I was scheduled to start my next cycle of Eribulin on Monday.  And at that moment, I decided that I couldn't do it.  I actually sobbed through these words to Danny:  "I couldn't flip the pancaaaaaakes!"  LOL!  But I couldn't bear the thought of allowing them to infuse more poison into my veins.  See, Eribulin is a known neurotoxic agent.  And since my serious symptoms began shortly after starting it, clearly it's the most likely cause.

I notified Dr. P via MDA Secure Messaging that I no longer wished to be on Eribulin, and I cancelled Monday's infusion.  She advised me to keep my neurology consult appointment and my appointment with her for the following Monday.  Here's where it gets complicated...

My every-3-month scans were done at the end of June (it's actually been 4 months because all was delayed due to radiation.)  They are calling it "mixed results."  The CT scan of the chest showed "significant enlargement of pleural metastases in the left hemithorax and enlargement of the left pleural effusion in keeping with progressive disease."  The CT of the abdomen & pelvis showed "no progression of hepatic disease."  The MRIs of the spine showed "widespread osseous metastases of thoracic spine, lumbar spine, and sacro iliac joints with no significant interval change detected ... no disease progression ... positive response to therapy within the lumbar spine."

Dr. P recommended that I stay on Eribulin since it appears to be working on at least some of my cancer.  Sorry but I am somewhat out of order here ... the scan results and this recommendation came before my meltdown and cancellation of my next cycle of Eribulin.  I suppose this is why it was such an emotional time for me.  My doctor is telling me that the chemo I'm on is somewhat working, yet I am making an executive decision to stop it!  But here's the thing:  I contend that the chemo is not actually working.  That's right, Dr. Kim thinks that the improvement shown in the bones is instead a result of the radiation to the spine and sacro-iliacs.  The plot thickens!!  My tumor markers continue to plummet downward, well into the "normal" range.  Dr. Kim can only speculate that this, too, is the result of large doses of radiation therapy to the back (so large, in fact, that she endured MUCH suffering from their side effects in the weeks following RT, and to this day she has a large patch of soft tissue edema on her back that regularly gets displaced into alien-like bulges.  Additionally her bowels have never been the same ... but I digress!)

Sooooo, clearly I need to have some discussion with my doctor!  Appointment coming soon.

Thanks for hanging in there with me.  I appreciate your prayers and support.  Thought I was coming out of this "rough patch," but I seem to have slipped right into another one.