Back To The Future

The MRI confirmed that the brain lesions are present and active - they are very slow gowing (about 40-50% growth after 12 months) - with a few more likely small spots.  So, Avastin is not an option, and my wife starts on the Carbo/Alimta/Keytruda mixture next week.

So, we are once more in a wait and see.  My wife started to have a bad alergic reaction to the Carbo this last time.   I found a couple of papers on Carboplatin reactions and one said the median number of treatments until patients start getting reactions is 8, and that's exactly true for my wife - it was her 8th treatment - 6 from her initial treatment 4 years ago, and her 2nd treatment now.   Also, her liver enzymes went way up, which they feel is likely due to the immunotherapy (she had a brief bout of increased liver enzymes when she had her Opdivo treatment several years ago).  She is now on some steroids to try and lower those liver enzymes.

So, it is likely that carbo is a no-go from here on in, but we are waiting to see the results of the blood test this next week (to make sure the liver enzymes are back down) and the post Carbo/Keytruda CT scan in about 2 weeks to see if the treatment was effective.  If it was effective they will need to decide if they will try carbo/keytruda again, but give it with increased steroids or slower delivery to reduce allergic reactions, continue with just the Keytruda, or consider going to something else.

So....who knows what will happen next, but it looks like we won't know for sure for another few weeks.

But, the grandbaby sure is cute!

The latest CT came back, and showed basically stability.  The main liver lesion stayed the same size, although there does seem to be one small new liver lesion.  Otherwise the CT appears basically the same.  No lymph issues, no lung issues.  Main issues seem to be liver and bone (hip).

Since the scan was stable (and not greatly improved) the concologist does not want to go with any more carbo after the reaction since the risk might be more than the benefit.  The liver enzymes were still up, so they are holding off on Keytruda (may start that again after liver enzymes are down - not sure) and will just give Alimta this round.  Alimta did absolutely nothing by itself a few years ago, so I don't hold out much hope for that - even with the Keytruda.

We will be meeting with oncologist as part of the Alimta treatment Friday, so we should know more then.

Talked to the oncologist last week.  He thinks the increasing hip/leg pain may be due to slight changes in the cancer there even though the CT scan doesn't show any real changes.  He recommends seeing a radiation oncologist this week so they can determine if the should start some radiation in the hip to see if it helps.  Liver enzymes are still up, and oncologist suggests this means the Keytruda is still active.  Gave my wife the Alimta treatment, and wants to try another week on low dose steroids to see if liver enzymes go down, and hopes to restart the Keytruda once the liver enzynmes are down.  If enzymes are still high next week he may suggest going on a higher dose of steroids.

Stability is good, but we will be watching the new liver spot, and watching for any growth in absence of carbo.  The oncologist didn't really discuss future treatments if Alimta/Keytruda doesn't work, but my wife are keeping our eye on two other potential clinical trials.

Well, my wife has been on a treatment hiatus more or less until the liver enzymes go down.  She has had a boost in steroids to help that along but that has involved many sleepless nights!  The enzymes finally went down today and the oncologist wants one more week before we see where we are at and if the Keytruda will be started again.  The hip pain is definitely getting bad on and off, so the radiation oncologist definitely wants to start soon (I think on the 30th) and thinks it will definitely help the hip pain.  It is likely that they will wait until after all the radiation is done to resume Keytruda.  But as I say, I have my doubts on whether the Keytruda is doing much, as I think most of the effectiveness was with the Carbo (which she can no longer take).

But there is no doubt that we have now come to the point where we are doing a treatment that is directly combating the effects of the cancer itself.  Before it was just managing all the side effects of the treatments.  A river has been crossed.

And a wonderful New Year to you! And to all those at GRACE.  May your holidays be filled with happiness and joy, and may your graciousness and compassion to others be returned to you many-fold more!

Met with the oncologist today.  Liver enzymes are still high, so he is upping the dosage of prednisone to try and get the inflammation of the liver down.  Last blood test also showed some slight increase of bilirubin, so they want the liver inflammation to go down before they retry any Keytruda.  They also are waiting for the radiation of the hip to be completed before they start anything else.

Oncologist also encouraged us to keep looking for potential clinical trials, as he more or less stated that the Keytruda/Alimta was kind of at the end of the road of the standard chemotherapies.  Not clear what is going to happen, but I hope my wife will able to do the Tarlox trial.

So, I must admit that 2020 is starting with a bit of apprehension about what's to come, but we'll take one treatment at a time and see what happens.  For the moment, increased prednisone, hip irradiation, blood retest next week, and possible liver ultrasound depending on the liver blood tests.

CT Scan is back.  As I suspected, once the carbo was taken out of the mix the Alimta and Keytruda has done nothing (except perhaps cause some inflammation requiring steroids which has caused other issues).

Scan shows growth in liver tumors and numerous new lung spots.  We are making plans to get a workup and possible clinical trials at MD Anderson.

Our oncologist is essentially out of normal "standard of care" options.  The tarlox trial is, for the moment, unavailable to TAK progressors.  I am guessing our next option is poziotinib, but we will see.

So now we wait.  Oncologist has sent for approval to get referral at MD Anderson and also sent a note to get Poziotanib via compassionate care.  MD Anderson people have been really nice, but won't schedule anything until they hear up or down on insurance coverage.

My wife has not been feeling good, especially this last week, and she doesn't know if it's because of the slow withdrawal from the prednizone, the liver tumor progression, or other actual cancer symptoms.  She also has been having some pain in sternum and spine (the sites of the first bone metastases, so we are pretty sure they are from cancer) that comes and goes.  At least the the pain in the hip is now gone after irradiation.  She goes from feeling pretty good to having fatigue and chills and pain, so we are hoping that at some of the issues are from the steroid withdrawal and will decrease as she gets lower dosages over the next few weeks.  Hopefully we will know more within the next month.  My wife's conversation with the oncologist was sobering and serious, and unless one of these trial drugs will work, well, we will have to see.

I will keep you updated as I know more.