Sophie’s Choice, Cancer Style

  

Back in late December/early January I noticed that I was having trouble getting onto my bike trainer.  It became more and more difficult to swing my left leg over the saddle.

Since I am not the most flexible person, I figured it was general tightness.  So I made sure to focus on my stretching more after my biking and running sessions.  I thought I was gaining flexibility based on my range of motion.  

But getting onto the bike became more difficult.  Then  started having difficulty doing other things.  I get an using my hands to lift my leg into bed or into the car.  Then dressing became more difficult.

Then, on January 12, I fell down almost a full flight of stairs.  I thought it was my fault with my hands being full and thinking I went to grab something.  I wasn't sure, though I remember it was my left leg that went.  The fall was scary.  Time really does slow down.  I waited to hear the sound of my neck breaking.    I got banged up a bit, but no real damage.  X-Rays showed all my hardware was in place in my back and that there were no broken bones.

I fell a couple of more times.  Each time I thought it was my fault.  One time was getting up rapidly to shut off something.  Another a misstep going into the garage to put out recycling. A MRI in early February indicated that I had a few muscles tears and a tendon tear - all relatively minor.  It also indicated that I had a CAM/femur issue which would be causing a nerve impingement.  Finally an answer, though I was still scheduled for an EMG March 8.  

But I felt increasing unsteadiness.  I purchased a hip brace and a knee brace the end of February to keep things aligned.  I though the falling was happening when my legs moved laterally, as compared to forward and back.  I then added a walker by the beginning of March.  If I kept focused on stopping my left leg from moving laterally, I was okay.  I also determined that when taking the stairs that I needed to go up with my right leg leading and go down with my left leg leading.  This was determined by a couple of falls when I did it in reverse.  But at least I figured it out.

March 8 came.  I was told right away that I had Lumbar Plexopathy - basically an injury to the nerves in the lumbar and/or sacral plexus.  Later on that day I received a call where the other shoe dropped.  I had demyelinating neuropathy. In both my left leg and right leg, though the right leg was minor.  It is an autoimmune disease.  From the NIH:

"Chronic inflammatory demyelinating polyneuropathy (CIDP) is a neurological disorder that involves progressive weakness and reduced senses in the arms and legs. It is caused by damage to the fat-based protective covering on nerves called the myelin sheath. "

Apparently it is a relatively rare condition.  Around 34,000 people in the United States have it. How do I know that?  The answer is simple - as I was writing this a commercial came on that I had not noticed before.  Looked like one of those commercials that the drug companies put out that tease issues before really pitching their drugs. I have seen this happen a few times for various conditions that I did not know were conditions.  This one was for CIDP.  Go figure.

The kicker in all of this?  CIDP is a potential side effect of immunotherapy treatments.  Yup.  The drug trial that looks to be saving my life has started crippling me.

I have started on steroids and it seems the numbness in my left leg is starting to improve. And I think I am getting a bit more movement back.  It can take a few more weeks to see.

The steroids can interfere a bit with my immunotherapy treatment, but it is a balance.  I was only scheduled for two more treatments and the steroids should not adversely affect what progress I have had made to date.  There is also a couple of other options which look to be highly effective. The problem is that it could undermine the immunotherapy I have to date.  Hello cancer.

So as of now I will ride things out with the steroids and see how they work.  I am remaining optimistic, but it is a bit difficult from time-to-time.  But talking about Sophie's Choice.

Good News For CRC Awareness Month

 Spoke with my new Oncologist.  Really good things.

First are the standard treatments available.  I ran through FOLFOX, FOLFORI and Lonsurf.  The last one left was Stivarga, but that is know for being nasty.  The one that my other doctor said may not be worth using because whatever extension of life would be really bad.  Of course I would probably try it if I had no other options.  I could try FOLFOX again for a few rounds before neuropathy.  But the best news is that FDA approved a new drug, Fruquintinib, two months ago.  It looks to be more effective than Stivarga, with less side effects.

Second are the results being reported for CRC patients who have gotten immunotherapy. These results are new since immunotherapy has not been used much in CRC until recently.  80% of patients who had stable cancer from immunotherapy continued to have stable cancer two years after stopping the immunotherapy.  (It could last longer, but at this time there is enough date for two years to be looked at it seems.)

Third, my cancer changed again.  A new mutation, which I did not have two years ago when my last sequencing was done two years ago, has developed.  This mutation is one that is an indicator of a cancer that will response to immunotherapy, which may be why I did so well on this trial.  There are also trials out there that are targeted to this mutation that are successful.  In connection with this, I will probably have a biopsy in the near future to get more details on my cancer and mutations since new tissue samples will provide more details as to this mutation and whether my cancer is now MSI, among other things.  This biopsy will be on one of two large tumors in my lungs, which are the two which are starting to grow a bit.

This biopsy will be done before any action is taken to address the lung tumors, whenever that becomes necessary since proton therapy would destroy them and we could not get samples.

I will be having a chest the end of March.  This will be to get a sense of how the two large lung tumors are growing.

So the plan is to get the biopsy to get a detailed idea of the current state of my cancer.  We will then monitor my cancer before doing the next thing.  In all likelihood the next thing will be to "nuke" the two main lung tumors if they get too big, then monitor the rest of the cancer.  There seems to be an 80% chance that the rest of the cancer will be stable for at least two years.  (My CEA dropped yesterday for the first time in a few months 😀) If and when the cancer starts growing, then I have at least one new drug and a few trials to jump into.  

Though it is not always easy, this is why I keep on pushing as much as I can.  I just got to have my leg heal up so I can start exercising again.  The EMG and MRI coming up should provide more answers on that.

#iTRI4aCURE