ADRIAN SUSKIN DIED ON 23 NOVEMBER 2014 AFTER 6 YEARS AND 8 MONTHS FROM THE DATE OF HIS DIAGNOSIS OF STAGE FOUR LUNG CANCER.

OUR DEVASTATED FAMILY LOST A DEVOTED SON, BROTHER, FATHER, HUSBAND AND UNCLE AND WHILST WE ARE STILL GRIEVING AND MOURNING OUR LOSS WE ARE GRATEFUL FOR THE TIME HE ENJOYED LIFE WHERE THE PROGNOSIS WAS NEVER BRILLIANT.

WE ENCOURAGED HIM TO WRITE THE BLOG AS A WAY OF DEALING WITH THE CONSTANT CALLS AND THE UNBELIEVABLE CONCERN THAT EVERYONE SHOWED. FRIENDS AND FAMILY JUST WANTED TO KNOW HOW HE WAS AND THROUGH THIS MEDIUM HE WAS ABLE TO SHARE THE DIFFICULT TIMES AND THE MAGIC TIMES AND A LITTLE OF THE ENORMITY OF WHAT HE ACHIEVED.

HE WAS IMMENSELY PROUD AND SURPRISED AT THE NUMBER OF PEOPLE WHO ACTUALLY READ HIS BLOG AND LIKEWISE WE WERE ALL SO PROUD OF THE WAY HIS WRITING AND EXPRESSION FLOURISHED OVER THE YEARS.

WE HAVE A POIGNANT AND UPLIFTING RECORD OF SOME VERY, VERY PRECIOUS TIMES AND WE WILL TRY TO MAKE SURE THAT THE WORK IN AFRICA WITH ZIMKIDS GOES ON FOREVER.

WE LOVE YOU ADE. ALWAYS.

Long overdue update

Well….where should I start!!??

As you all know this has been a pretty intense and thoroughly gruelling time for me. It seems like I have so much to report but it’s all been quite grim.

After my appointment with Dr Drilon I went back on the Cabo and it was even more difficult than before. The side effects were extensive and nothing seemed to get easy. I’m sure that the general depression that I was in did not help me at all to tolerate these side effects. It has been difficult to eat and even to communicate as my voice has been affected and I can hardly talk. Eating made me feel nauseous and honestly the desire to do so wasn’t there at all! Fatigue is overwhelming and of course all I wanted to do was sleep all day.

I know that my family spent a great deal of time trying to motivate me to eat, drink, move and do all the ‘normal stuff’ but honestly all I wanted to do was go back home and try to get over these physically debilitating feelings.

I know I scared them as I got more and more sick but there was no way I could possibly have behaved differently as I just felt too sick.

After two weeks of this I made up a plan to go home and to come off the meds for a while until at least I could see and feel that I was feeling better.

Then the big sister arrived and scuppered the plans!

Let me assure you all that I have had the most exceptional care from all my family. My Mom, my kids, my small sister Phil and brother in law Howard and all my nieces and nephews and other brother in law Gerry have been there for my every whim and need. What I just wanted was to go home.

Once I was off the oxygen and didn’t need an inhaler all I could focus on was getting back to my apartment in Baltimore.

I had my plan, wrote my to do list that Rus checked after a lengthy discussion as to why I needed to go. Of course, she added her own list! I was determined to get on a bus and go back to Baltimore and I could see the disapproval and worry but that is exactly what I did.

And here I am. Have shopped, cooked, slept and watched footie and I am feeling a bit better. I have had my heart checked and my meds changed by my wonderful heart doc. I am not going back to New York until the 26^th November and then I will make the decision as to the next stage of my treatment. All I need to do now is get stronger and feel good.

Remember I just went to New York for a few days when all the gall bladder stuff kicked off. So every plan went belly up. Our plans to go to Africa will now be postponed till next year so I have been busy with that too. I want to go visit my Mom in Florida too and I’m sure I will come up with some other plans for travel.

I will try to keep you all posted and just to say again that the support and love from all my family and friends has been amazing and I am now doing things my way! Haha!

Carpe Diem.

Doctor visit today

Thanks Howard for the summation.

Ade and I met with Dr. Alexander Drilon and Nurse Practioner Claire Moran from 10:30-11:40 today.

Here is a recap of what was discussed.  

Executive summary:  Cancer didn't grow.  Adrian resumes Cabo meds today..

Dr. Drilon reviewed the results of yesterday's catscan.

• "Your labs look good to me.  The scan doesn't look any different."
• "The cancer looks stable."

On Cabo resumption:

• Begin today (Ade took one at 12:15 today)
• Keep at same dose: 60 mg.  If he experiences any negative side effects, they will reduce to 40 mg.
• Ade needs to report any new negative symptoms.
• Begin keeping diary of daily usage.
• Hand in old diary at next visit (October 29)

On the cause of gall bladder infection:

• "The pill (Cabo) didn't cause the infection.  We can't say that it's impossible, but the likelihood is very low."

On Adrian's depression:

• "We need to get your mood under control." (This was the first thing he said upon entering the room.)
• "The mood more than anything needs to be worked on."
• We collectively deferred against seeing head doc Dr. Key but they are making an appointment for Ade to see him the beginning of next week.  Ade agreed to the appointment.

Misc.

• Next appointment: October 29 AFTER meeting with Dr. Simon (he's the one who hopefully will OK the removal of the drainage tube on the morning of October 29).
• Ade should use the spirometer (sp?) 2-4 times a day to improve breathing.

Conversation with Nurse Moran (more extensive than discussion with Dr. Drilon):

• Ade admitted he was "absolutely fatigued"
• He said he head and back caused him pain yesterday.
• He said he suffered a bit of vomiting....nothing major....and he controls with meds
• He reported no mouth sores, numbness or tingling in limbs, or blistering on palms of hands or feet.
• Weight: 146 pounds
• Ade reported some shortness of breath
• White blood count "looks goods"

KEY UPCOMING DATES

• Week of Oct.: 20 Appointment with Dr. Key (they will alert us to exact day and time....if it's Monday or Tuesday, I can take Ade)
• Morning of Oct. 29: Dr. Simon
• Afternoon of Oct. 29: Dr. Drilon (they will alert us to exact time)

What an ordeal!!!

I know you have all been calling and reaching out to me non-stop, and I wanted to thank you all for your love and support. Here's what has been going on:

I went on this great trial drug (an oral med) and 10 days later got a massive infection of my gall bladder. Just a coincidence. But the side effects of the new drug were pretty tough and then I got slammed by the infection. Because I have to do things the hard way, I didn't get the easy to treat infection that 90 percent of all people get. Nope, I got the one that only 10 percent get that has a high mortality rate!  MSK opened the OR for me on Sunday and inserted a drain which I will have for the next few weeks. Of course my heart rate went crazy from the infection and so I was moved to ICU for 6 days and then a telemetry floor for another 6 days. As that was resolving I got aspiration pneumonia from a coughing fit.

So now that's resolving and I am home in 6B in manhattan with the worlds best dog - the magical Luca.  Here's a picture of us having lunch today. I am extremely fatigued and trying to eat and walk a bit. Its not easy. Plus the emotional toll is pretty heavy! I have to go and see the trial doctor on Wednesday to resume the trial. Yikes. How many ways can I get my arse kicked. Sorry for my non responsiveness. It was all I could do to keep on keeping on. I'm trying to not have visitors right now so that I can recover fully and not be concerned with coming down with something else.

Thank you to my family for their endless love and support. Everyone should have an 85 year old mother like Bobba! 

Carpe Diem.

The Cabozantinib summation

Met with Dr. Alex Drilon and Nurse Practitioner Claire Moran from 9:45 to 11:30 Wednesday morning September 17th.

Thanks to my brother in law Howard for his amazing note taking and summation, here is a recap of what was discussed as well as the results of certain routine tests:

Blood Pressure

117/75

Heart Rate

119

Dr. Drilon suggested it was due to anxiety about the appointment. We will monitor this going forward. I am also off Metoprolol which controlled the heart rate but I can't be on Metoprolol and Lisinopril (new drug that lowers protein in urine) at the same time.

Pain/Pain management.

When Nurse Moran asked about the level of my back pain on a level of 1 to 10 (the worst), my response was 4-5. For pain management, they want me on the Hydromophone. What's causing the pain? Who the hell knows.

Best quote of the day (from Nurse Moran): "You met the registration criteria (for the Cabozantinib trial) and you are eligible for the program."

Daily regimen for taking Cabozantinib (known informally as Cabo):

Take one 60 mg pill a day with quite a few other restrictions etc.

Other things to know about Cabo:

Stay away from herbal meds, Seville oranges and grapefruit.

According to Claire, Cabo helps shrink the cancers and that will make me feel physically better.

Cabo side effects:

Fatigue

Diarrhea....the #1 side effect.

Skin changes.... my skin may lighten.

Hair changes.... my hair may turn white which is irreversible.

Taste changes.

Possible blistering on hands and feet.

Cabo may increase protein levels in urine. Just what I need!

Carpe Diem.

The latest test results

I had just emailed the doctor's office with the following:

"Hi Andres,

Please could you check with Dr. Drilon about today's 24hour protein urine test. If my numbers are once again too high I would like to go back to Baltimore. Maybe we could reschedule for next week if there is any point!

Thanks,

Adrian.”

The reason was I had seen my results on the web site!

Then Dr. Drilon called me shortly afterwards. Basically we discussed that the 24hour protein check was again too high but the spot check (small sample) was now well within range.

So what does this all mean? Simply put, I am going in tomorrow morning to start the trial. The only downside is that if the 24hour test reaches 2000mg/TV I have to stop taking Cabozantinib.

Normally, once starting the Cabozantinib I would need to return to MSKCC here in New York once a month. But for the first month I will have to have my urine monitored every week. The good thing is that I can do the tests in Baltimore.

Carpe Diem.

Blindsided again

After numerous (and I mean numerous) scans, blood tests, urine tests and EKG's my urine protein is too high.

For me to enter the trial my protein level needs to be 1.0 or below. Mine was 1.8! If you are on the trial and your level gets to 2.0 then you have to stop the Cabozantinib. The direct cause of the elevated protein level is from me getting Avastin all this time. While the drug had kept my cancer in check for the longest time it was also causing problems with my kidneys.

The only thing for me to do was obviously to not get the Avastin anymore. That is now the case. The next thing I have to do is drink copious amounts of water to essentially flush my kidneys and get rid of the lingering remnants of Avastin. Easier said than done.

So for the next few days I am trying to consume serious amounts of water and I will be going back to MSKCC in New York on Wednesday September 17th. Hopefully the protein will be at an acceptable level and I will be able to start the Cabozantinib.

I don't have to tell you that this was all hugely disappointing but I need to move and and hope for the best.

Carpe Diem.

Onwards

I had my consult with the lead investigator of the MSKCC (Memorial Sloan Kettering Cancer Center)  trial yesterday. It was a really excellent and productive meeting.

In a nutshell, I will be starting the Cabozantinib treatment at MSKCC's Phase II trial this Friday September 12th. It's a one a day pill.

The doctor was really really nice. As was his oncology nurse. I am really excited to be a part of this trial and work with them.

What was gleaned from my liver biopsy a couple of months ago was that I had a RET rearrangement (mutation) in my cancer cells. Only 1% of the population tested ever has this mutation. So in a way, I'm very lucky indeed.

This is all bitter sweet as I will not be going back to UMD St. Joe's for the foreseeable future. I had spent 5 years there and made a lot of good friends. But time to move on to the next treatment regimen.

The one thing that the Doctor reiterated was that they are no longer looking to (or able to) cure my disease. It now has to be managed. Managed hopefully equals time and quality of life.

Now where did I put my suitcase?

Carpe Diem.

NY NY

Off to New York tomorrow (Thursday). I have an appointment with Dr. Drilon at Memorial Sloane Kettering Cancer Center (MSKCC) on Friday. This is all to do with the Cabozantinib trial.

Carpe Diem.

Chemo ? (Round ?)

Ok, so here it is. Blood work was fine, urine protein was normal, weight was sort of stable at 146lbs and blood pressure was good. I did not get the Alimta or the Avastin but I did get the Zometa. It's a bone strengthening drug that I have been receiving for the past few months.

I had a good chat with Dr. Schraeder. The consensus is that I get into a phase II trial at Memorial Sloan Kettering in NY. It's too involved to explain so check out this link:

http://www.mskcc.org/cancer-care/trial/12-097

I will know more next week when I hopefully get in touch with the Doctors at MSKCC.

Carpe Diem.