AS many of you know..........
My dear Hubby has Stage IV diagnose, numerous Lung Mets and inoperable status
We veered from the typical path after having gone thru the first two standard lines of treatment, and Stivarga leaving Vectibix
on the table untouched.
We decided to go the ROAD LESS TRAVELED
and bravely enter the Clinical Trial World.
I also decided to publicly share our experiences with you.
We started our second clinical trial August 25th and it abruptly ended yesterday Nov 3rd.............Tivantinib Clinical Trial- UPDATE- **NOT GOOD**
(The last part I added yesterday)viewtopic.php?f=1&t=47465To start the day- 8 AM blood tests, 9 AM CT Scan, 10 AM meeting with Trial Dr, to determine whether drug was working or we move to the next trial. Enter the trial DR......... beaming, asking if Mike felt as good as his blood work looked. He said we would remain on trial IF no new growth or less than 20% increase in existing tumor loadHe asked how Mike was feeling in regard to Trial Drug Tivantinib.....
and I still stand firmly with my answer: ZERO SIDE EFFECTS ATTRIBUTED TO THE DRUG. Then heard this.....& immediately said halt & wait for scan....Symptoms:
Since June he had a slight irritation in his throat & a occasional cough to a persistent tickled/ irritated throat....
Just one month ago: He was just coughing- but fully functional, working 5-6 days/ week, still riding stationary bike 9 miles 3-4 times/ week- everything else normalWe have been prescribed:
inhalers; allergy meds; sinus meds; cough suppressant: pills/ sprays/ drops/ syrups, with ZERO RESULTS/ SYMPTOM RELIEF
At my persistent follow up, last week I called his Trial NP, listed symptoms and she ordered antibiotics, codeine cough syrup & humidifier thinking it was acute sinus infectionHe has gone down hill daily this past three weeks, and last week to this week down a mountain
Hubby is wheezing, gasping for breath, can hardly climb stairs, lost 15-20 lbs., not wanting to eat and has zero energy from coughing up a storm or constantly suppressing the cough.WE WERE IMMEDIATELY USHERED TO THE WAITING ROOM.... AS DR WANTED TO REVIEW/ STUDY NEW CT SCAN- COMPARED TO AUGUST 11TH waited 1/2 day then he brought us back in.
...after checking CT scan/ report from this mornings tests....Then the BOMBSHELLS STARTED DROPPING........
. Said YES new growth & YES enlargement of old tumors, so he is off trial
Immediately put him on Dexamethasone steroids
4 mg 2 x'x daily to further suppress hubby's coughingand last night I looked up the side effects, side issues
and boy am I not looking forward to any of that stuff:
Muscle loss, weight gain, moodiness, depression of immune system/ response, hot flashes, irritated stomach, sleeplessness, rising glucose levels- which endanger his newly diagnosed mild diabetes & difficulty when weaning off issues New development in past 2 months per CT Scan: Tumors have now grown near airways, are now BLOCKING AIRWAYS & have COLLAPSED Mike's left lower lung. The technical reading:
>interval increase in size of left hilary adenopathy, which is now conclusive of the left lower lobe bronchus with post-obstructive atelectasis consistent with drowned lung
>increased size of several pulmonary and pleural nodules, masses and lymph nodes- consistent with worsening disease
>Soft tissue nodules seen within the trachea at its bifurcation, concerning for endobronchial metastatic disease versus secretions
He said he needed to get to a radiation therapist asap to see IF palliative surgery CAN be done
He asked if we wanted to be closer to SD to do this.... and I asked what he thought
He said do both- go to who ever is quicker USC (Los Angeles) radiation specialist appt scheduled this Friday Nov 7th 9 AM
I also called UCSD Radiation Oncology
and they are on standby waiting referral from USC Trial DR & Radiation DR's to set up an appt locally as well TO ADD TO MY STRESS:
(Because hey I apparently have not had enough crap to have met my max load)
At the end of last week my brother-in-law had the one in 12,000 luck to have his 8 yr old cataract surgery fubar and his retina tore loose from his eye, and has been through several procedures/laser to salvage his sight- including today
My 79 year old mom fell this morning, hit her head on concrete steps, bashed her left leg & was knocked unconscious. She got up, mopped up blood, drove herself to hospital & had 7 staples placed in the back of her skull & now has a cane to walk
Needless to say I have gone from stone cold worried/ stressed......... to panicked and sick to my stomach..........to GET YOU ASS IN HIGH GEAR & GET ER' DONE!
I am setting up all docs/ CT Scans, diagnoses, reports etc to prep for the fistful of new DR's now added to hubby's care list, including NEW local Oncologist next Monday
I am clearing my office, setting it up for easy access to transition my self into taking over my new position:
Monday I will be working Mon-Sat Managing our family owned store and tying up loose ends to transition hubby into part-time/ around his HOPEFULLY new routine of procedures necessary to salvage his lung/ save his lifeSWINGING CHICKENS, PRAYERS, BEST WISHES, GOOD VIBES
...... Hey send them all please
I will be keeping in touch sporadically once I maintain some sort of balance, get emergencies under control, and my family peeled off the ceilings Best wishes on YOUR Journeys