Back from Israel - and now?

Wed, 02/26/2020 - 21:01

Well, the good news is that we are back from Israel and had a wonderful trip seeing our daughter, son-in-law, and grandson.  They are such a blessing.

And, we should be able to finally schedule a meeting at MD Anderson in the next day or two.

But - now that we are back.......

We met with the oncologist today and got the results of the latest blood test.  The bilirubin count is up significantly.  The oncologist thinks the decreasing liver function may preclude any of the clinical trials, and perhaps even any drugs under compassionate care.  He also gave us a version of "the talk" telling us to make sure we talk about what my wife wants done in case of emergency.  He suggested that when the liver function starts to go like this, things can often proceed pretty quickly.

If the last talk with my wife over the phone was serious - this one in person with both of us was one shade away from somber.

The days of POSSIBLA seem so far away.  One day at a time........

JanineT Forum …

Hi Scohn,


I'm glad y'all had a good trip to Israel.  Was it to visit your daughter or was it a trip with your daughter.  Either way time with your daughter, son-in-law and that luscious grandbaby is a wonderful thing.

I hate to hear that options aren't looking promising.  I know you are both holding your nerve and taking it one day at a time.  I will hope for the unlikely.


Keeping you all in my thoughts,


Jim C Forum Mo…

Hi scohn,


I too am happy that you had such a great trip and were able to share good times with family. There's really nothing more important in this world than being with those we love.


I'm sorry that the word from your wife's doctor is less than encouraging, but I share Janine's hope that another treatment option can be found and implemented. As always, we'll be thinking of you...


Jim C Forum Moderator



We finally got everything we needed from the insurance company, and now have an appointment at MD Anderson for March 18.  We will see if the liver function precludes anything or not.  My wife had an ultrasound today to see if they could do anything surgically to improve liver function.  The good news was that the main bile duct is clear, the bad news is that the cancer is blocking a lot of the tributaries, which aren't stentable, and so there is nothing they can do surgically to try and relieve the liver issues.


It was indeed wonderful to see the children and grandson.  He is such a joy.  As I was telling someone today, it is just so surreal (like the early days of this, eh?) to see my wife who, albeit with a bit less stamina, still feels pretty good and doing pretty well but has this prognosis sitting over her.


March 17 is our engagement anniversary.  Not designed to be St. Patrick's Day, it just worked out that way.  This year we spend it flying to Houston for hope.  We were in Israel over Valentine's Day this year, so my wife made me her annual chocolate heart today.


As always, my deep appreciation to you both for your kindness and care for all who pass this way through these digital portals.


Hi everyone!  Just a brief update on the last month or so.


The compassionate care Poziotinib request finally went through.  We had our consult with one of the country's experts on Poziotinib (and HER2) and he definitely thought it was the way to go.  We had been scheduled to start on March 24th, but with consults with the oncologists and shipping and who knows what else (and a lot of great advocacy by Marcia at Exon20 Group!) the company finally it to the hospital on the 31st and my wife had her first treatment on April 1 (no joke!).


That week before was an incredibly stressful week after we found out on the 23rd that the medication she was supposed to start on the 24th wasn't in yet.  Especially after the "it can be a matter of weeks" talk by the oncologist.  My wife's bilirubin was starting to soar, her edema was increasing, and her stamina was steadily decreasing.  But, we finally started treatment, and now we see if it works.


One possible hopeful sign for me (we might know more after we talk to the doctor via phone call later today) is that the rash which had begun to cover her entire body a day or so after our Houston trip, and was quite itchy (that they said was due to the liver dysfunction) has now started to go away.  The edema is beginning to look a little better as well (although she said it hurts about the same).  One day at a time.  The doctor in Houston said that since the bilirubin was going up so quickly, he was hopeful that if the drug started to work and reduce the tumor size that the liver channels would open up and the bilirubin would begin to decrease equally as quickly.


So, here we are - on my wife's eigth line of treatment (ninth?), poziotinib, taken out of trial as a last chance effort (although the Houston doctor suggested that if the liver could be gotten under control and back to near normal there might be a chance for a couple of other trials).


And all of this compounded with the coronovirus stay-in-place.  I could not be there with her for the start of her treatment as the hospital is taking no visitors for any of the patients.


Thanks, as always, and I will keep you up on what happens!

JanineT Forum …

Let's see, this one should be easy...Poziotinib. Possibility.  Positivity


Hi Scohn,  Thank you for updating us.  It means a lot to me but better yet I'm sure it means a lot to those looking for good info.  I can imagine how stressful it's been with not knowing if meds might show up.  I'm so glad you've been able to get the meds and the wonderful help.  I know how hard you work to get what you need.  On a similar note, my niece is still recovering from reconstructive surgery due to breast cancer is caring for her husband who is just out of the hospital from surgery for colon cancer.   They decided to get it done while they didn't have covid patients in the hospital.  She was able to stay during the surgery and got to see him after he woke but had to leave soon after.  She said the hospital was eerily empty and quiet.  My and niece and I have talked extensively just how on top of everything she's had to be to get what she's needed including lots of advocacy and good income to pay for all the things that insurance doesn't pay for but has made her recovery possible. 


I hope the treatment gets her liver function back nearer to normal.  Keep us posted.


Take care,






Dr West

I just wanted to offer congratulations to both of you on getting to this point, along with the hope that poziotinib will be helpful for her. It's a drug that can have its challenges to tolerate, but I hope it provides enough benefit to be clearly worth it for her.

All the best to you both.

-Dr. West


Don't know whether to classify this under good news, bad news, or just news these days.


The good news is that my wife had her bilirubin taken as part of her blood work today, and it has fallen in half in just this last week, which is why they think the itchy body rash she had before for about two weeks has completely gone away.  Still way above normal, but much better, (had gone from about 1 at the beginning of February to about 18 at the end of March - now about 9 after a week of Pozi) and clearly showing that the poziotinib has generated improvement in the liver.  My wife had a terrible time with the TAK side effects, and this (so far on the lower dose) has been manageable - mainly mouth dryness and pain (no sores yet), heartburn, and bloody noses.  It gives us some reasonable hope that she will survive to her 5 year point from diagnosis later this month.  Moreover, TAK did not work at all on the liver lesions, and this is clearly having an effect.


But, now the bad? scary? news.  The reason she had the blood test is that she had to go the emergency room.  I came back from a walk today and found her on the floor, where she had fainted and gotten a cut (minor) on her scalp, and was bleeding.  She was quite conscious but a bit confused and dazed.  Basically they don't know exactly what it was from.  She was feeling much better today than she had been this last week, and did a lot of cleaning around the house and outside, and simply may have overexerted herself.  But, the CT scan they took also showed that some of the brain lesions are growing, and they worry that also may have contributed.  So, otherwise she checked out fine and was released - some IV fluids in case of any dehydration (which they didn't feel was the case), a drop of skin glue for the cut on her head, and back home where she will have her regular exam with her oncologist next week.  Her RBC and hermatocrit have definitely been falling recently, so that also could have contributed, but hopefully the fact she has been feeling (until this afternoon) generally better may also be a good sign re: the RBC.


So, as usual, one day at a time, where each day is a blessing, but I am not sure the sight of her on the floor is one I will ever be able to remove from my mind.

JanineT Forum …

Oh dear, I hope it was just being faint because of all the extra work and I hope you were able to go with her in the ED. 

In reply to by JanineT Forum …


I am hoping it was just exertion too.  She is feeling much better today after a good night's sleep.  Over the past few days her coloration is definitely better and her edema is better (also hopefully good signs).  Still has her general fatigue and some soreness where she hit her head, but otherwise feeling pretty good.  She actually said this morning that she would be fine with getting the larger dose of Pozi since the side effects weren't so bad so far.


As for the ER, no I wasn't able to go with her.  No visitors.  They take your number and give you updates.  In my case my wife called with updates but they never called me at all.  Luckily she was released after a few hours.