Wednesday, November 12, 2014

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 26th 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.

Wednesday, October 15, 2014

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)

Sunday, October 12, 2014

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.


Wednesday, September 17, 2014

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.

Tuesday, September 16, 2014

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.

Friday, September 12, 2014

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.

Saturday, September 6, 2014

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.



Wednesday, September 3, 2014

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.

Saturday, August 30, 2014

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.

Tuesday, August 26, 2014

And the results are.............

NOT what I wanted! The word progression usually means something good. But in my case it's not.

While the cancer in the lung appears stable there is progression in the liver and the bones. It will mean a change in the chemo protocol but at this stage I am not sure what plan B is yet. I will still go to the "spa" on Friday but will not get the Alimta and the Avastin. Only the Zometa which is a bone strengthening drug.

I am getting in touch with all my consultant doctors and I'm sure a plan B will be formulated. I'm feeling ok but obviously a bit disappointed. Also a bit afraid of the new unknown.

Carpe Diem.

Scan day

Oh joy. PET scan this morning and then hurry up and wait for the results.

Then off to the Spa (chemo) on Friday. What a lovely week.

Carpe Diem.

Saturday, August 23, 2014

One very content and happy man

At dinner with Diana, Rob and Mike. Yes, that is Tiramisu cake.


I want to thank each and everyone of you who wished me happy birthday. Screw you if you forgot or didn't care  I have tried to personally reply to all of you. If i missed you I am truly sorry. As I said before, I kind of like getting older because the alternative sucks. Thank you all from the bottom of my heart for your love and support these past few years. Need I say more?

Carpe Diem.

My birthday wish


OK, so you are not supposed to tell anyone about the wish you made or it won't come true but here goes anyway.

I ask everyone that wishes me a happy birthday today to please do a stranger a small favor. Or do something or anything good today. Not in my name or anyone's name.

I count my blessings every day and am happy to "age" and celebrate my birthdays for obvious reasons.

Carpe Diem.

P.S. The picture is my daily reminder.




Thursday, August 21, 2014

Back from Zim to my reality

What a wonderful and fruitful trip back to Zim. Got to see and spend time with so many good friends and was able to accomplish a lot of positive things. The proof is in the Facebook picture albums.

Carpe Diem

Thursday, August 7, 2014

Chemo 7 (Round 9) and off to Zimbabwe

All went relatively smoothly but things seemed to take forever. The protein in my urine was "normal" this time. Go figure. So I was able to get all the poisons.

My vitals were ok. The blood work was ok. But my weight is down again. I think I may have cancer :-) I know that I have to eat more frequently and hopefully they will fatten me up in Zimbabwe. How ironic that I have to go to Zim to fatten up.

I'm looking forward to this trip. I have lots of small projects that I am involved in as well as my continued support for Zimkids. I am taking two suitcases full of medical stuff, gifts and clothing.

I will of course be visiting Vic Falls with some of my very close friends. I know that will be a special time. Needless to say, I will be also spending a couple of days doing my favorite thing. Time in the bush with the animals.

So now I sit in the lounge waiting for my flight to be announced and a 17 hour flight to enjoy.

Carpe Diem.

Friday, July 18, 2014

Chemo 6 (Round 9)

I'm at the "Spa" again today. Not one of my finer visits! 

My weight is down slightly, my blood pressure is a tad high and the protein in my urine is high. So, I will not be getting the Avastin this round but I will be getting the Alimta. 

I’m generally feeling fine so what the…….? 

Carpe Diem.

Sunday, July 13, 2014

World Cup day

The weather was fantastic so we went to copacabana beach in the morning! The beach wasbeautiful and not too crowded and the weather was perfect! The waves were massive and    the water was a bit cold so we didn't do much (any) swimming. The "views" were fantastic (wink   wink). We tried the famous beach drink Caipirinha. Absolutely gross!

Then we headed down early to the Maracanã. The metro was offering free trips. The           stadium looked beautiful. Our seats were at the very top but the view was fantastic. An        exciting game that was very tense, with a lot of missed chances. We were ecstatic when    Mario Gotze scored and were biting our nails off for the remaining 5-10 minutes! Very glad   to see the Germans lift the trophy! Did I mention that the Argy fans were vile!!!

Carpe Diem.


Friday, July 11, 2014

Rio.......day 1 and 2

We got into Rio early Friday morning. Our host Marques picked us up at the airport and drove us to the apartment in Copacabana where we were staying. Literally two blocks from the beach. We had a nap before heading out for our favela tour at 2:00. We were in a group with about 10 others. Our guide and driver were from the favelas. We got to see 2 different ones. The first was Rocinha which is the biggest in Rio. The second was much smaller.

We ate dinner at a churrascaria. The picaña was fantastic and a serious overdose of meat was consumed!

Saturday we went in the morning up Corocovado mountain to see Christ the Redeemer. It was raining in the morning and a bit cloudy when we got up there. When the clouds lifted the views were fantastic! In the afternoon we went to see Sugar Loaf mountain. The line was really really long but we did make it up to the very top in time to see the sunset. We had some very cool views of Rio at night and it looked beautiful. You could catch a glimpse of the redeemer statue that was lit green and yellow for Brazils match tonight. We were able to catch the end of the match at a restaurant. Each restaurant was packed with people watching the match.


Sunday is the big one! We will have nice weather so were going to Copacabana beach in the morning before heading to the Maracanã to watch the final!


Carpe Diem.

Thursday, July 10, 2014

OK. So I was wrong

How about.......... off to the World Cup Final in Rio De Janeiro to watch Germany play Argentina.

Carpe Diem

Tuesday, July 8, 2014

World Cup 2014 Brazil

Wednesday NY. Thursday Rio. My "half" guess. Germany vs Netherlands with Germany to win 2-1.

Carpe Diem.

Friday, June 27, 2014

Tuesday, June 24, 2014

I HAVE A Request if you will please read this

I am once again trying to raise funds for Zimkids and their vocational program. Over the next short while I am prepared to match any donation to Zimkids that any of you make up to US$2,000. NO, THIS IS NOT A SCAM. You can email me privately with your pledge and I will explain what I propose to do. If you are happy with what I am doing then you can go ahead and make the donation. If you want to remain anonymous then let me know as well. THANK YOU.

asuskin@hotmail.com

Carpe Diem.

Thursday, June 19, 2014

Upcoming trips

Squeezed between chemo treatments.

Rio De Janeiro July 10th until July 14th. World Cup FINAL.

Zimbabwe August 7th until August 20th. Need I say more?

Carpe Diem.

Thursday, June 12, 2014

World Cup 2014 Brazil starts today

Why is this so special you ask? Other than the fact that I love football/soccer!

When I was diagnosed in 2008 I promised Robyn that we would go to World Cup 2010 in South Africa. It was a milestone for me to get there but I did and we had a magnificent time.

Now, World Cup 2014 Brazil has rolled around and once again, I made the pledge to Rob. Well guess what? I'm still "around" and we are off to the FINAL in less than a month.

Need I say more........... 

Carpe Diem.

Wednesday, June 11, 2014

Biopsy results

I just had a really nice chat with the Doctor at Champions Oncology. The company that did the exome sequencing

Basically, she was pleased with what the results yielded. She explained a few things.

1. The fact the mice transplant tumors did not “take" was a “good” thing and not to be concerned about that. The reason being was that the tumor was not aggressive or fast growing.

2. In the report there is a diagram labelled Genetic Alterations with Established Clinical Significance.  One of the genes called RET showed "Rearrangement". That is the key. That is the mutation that is causing the naughty stuff. She was very pleased that it showed up.

3. The drug used to treat this mutation is called Cabozantinib or Cometriq. It’s an oral medication. It’s supposed to be very effective. 


She advised that no changes should be made to my current protocol of Alimta and Avastin until such time as these drugs start failing me!

Carpe Diem………….

Monday, June 9, 2014

Busy week

Just to take my mind off the lousy post chemo days.

Tuesday massage. 

Wednesday sensory deprivation tank.


Friday driving exotic cars.


Carpe Diem.

Friday, June 6, 2014

Chemo 4 (Round 9)

All went fine with this latest round of Alimta and Avastin. Having discussed the latest CT scan results with Dr. Schraeder we will continue this protocol every three weeks until such time as the cancer is NOT stable and spreads further. It is still showing up in my lung, liver and bones but is stable and NO new growths. I will have a PET scan in two months.

All the other consulting doctors are in agreement with the current plan and also agree that no changes be made until the Alimta and Avastin start to fail. I am comfortable with my back up plans concerning the TRIAL with Dr. Brahmer at John's Hopkins and I am also awaiting the results of the Exome genetic testing.

My blood work was fine, my blood pressure was a tad high and the urine protein was LOW (good). I have put on a couple of pounds. Just so you know.....on a good day I am 5' 8 1/2", 153 lbs with a BMI of 23. Not bad. For you metric nerds..... I am 174 m, 69.4 Kg or 10.9 Stones!

I will post the genetic test results as soon as they are available.

Carpe Diem.

Thursday, June 5, 2014

The chamber was empty

The latest scan results appear to show STABLE. Still in my lung, liver and bones but stable.

Carpe Diem.

Wednesday, June 4, 2014

Russian Roulette?

That's what it feels like every time a cancer patient goes for a scan. You just never know if the odds-on "empty" chambers will show up or wether you'll blast your brains out. I don't mean to sound so melodramatic but for those who have gone through this can definitely relate.

I had my scan this morning and now we wait. Empty chamber or bullet?

The scan went fairly quickly as I only did the CT and not the PET. It was also done after two months and not the typical three month interval. The reason being is to see if my current regimen of Alimta and Avastin is still effective.

As far as the biopsy results are concerned, we should have some results around about June 10th.

Carpe Diem.

Thursday, May 22, 2014

How ironic

This arrived yesterday. I should have gotten it February of 2013 but I guess better late than never. Maybe they thought I was.....

Carpe Diem.


Friday, May 16, 2014

Chemo 3 (Round 9)

A good session. Why? Because I met and talked to this young lady (28) who has been dealing with liver and breast cancer for the last two years. She was such a pleasure to talk to and has such a great attitude. Her parents and in laws were there with her as well.

My weight was down slightly and all the blood work was fine. The urine protein was low and stable and the meeting with Doc Schraeder was good. I will be CT scanned just before my next chemo (4th session) on June 6th.

Now, on a rather upsetting note. A good friend of mine who was dealing with cancer for the past few years was just told that it has spread after being cancer free for quite a while. Non of this makes sense anymore! I wish him well. He did ask me if I was at "The Spa" today and I loved the new title for the infusion center. So, from now on, you will hear me talk of going to "The Spa" and you will know what I am talking about.

Carpe Diem.


Mr. Nyathi get his new wheels






Carpe Diem.

Wednesday, May 14, 2014

The biopsy

The biopsy was done this morning and I'm now home feeling ok. The lesion on the liver has allegedly remained the same or shrunk but the Doc was able to get the samples. So I guess that was good on both counts. It will be a couple of weeks until I hear anything back on the testing. 

Meanwhile.....chemo this Friday.

Carpe Diem.

Thursday, May 8, 2014

What do I want?

With regards the liver biopsy scheduled for this coming Wednesday May 14th. What do I want? I want the Interventional Radiologist to do the CT scan before the procedure and say "sorry, but there is not enough tumor to biopsy. It's shrunk!"

I certainly DO NOT want to jinx myself but the reality is what will be will be. I will have to deal with whatever comes up. There is no way around this!

Here's to being optimistic.

Carpe Diem.

Saturday, May 3, 2014

World Cup 2014 tickets for sale

Spread the word or buy the tickets and receive a genuine Zimbabwean 100trillion dollar bill in excellent condition.

We have team specific (USA) series 7 tickets. The side of the draw depends on the results of the group games. 

If the USA finish 1st, 3rd, or 4th in the group stages, it's games 54, 58, 61. Game 54 is the R16 in Porto Alegre. Game 58 is the QF in Rio. Game 61 is the SF in Belo Horizonte. 

If the USA finish 2nd in the group stages, it's games 56, 60, 62. Game 56 is R16 in Salvador. Game 60 is the QF in Brasilia. Game 62 is the SF in Sao Paulo.  

The tickets that are NOT available are USA vs Germany (group), USA vs Portugal (group) and the FINAL.

The prices are USA vs Ghana US$800 for the pair. R16 US$1,000 for the pair. QF US$1,600 for the pair and SF US$2,000 for the pair. Remember, everything is negotiable.

The buyer is responsible for shipping.

Questions? Contact me via email.
Thanks.

Carpe Diem.



Friday, May 2, 2014

Rescheduled liver and onion biopsy

My liver biopsy has been rescheduled for Wednesday May 14th. I have promised not to eat before and screw up the procedure for a second time.

What is going to happen is that the interventional radiologist is going to do a "dry" CT scan of my liver to see exactly what is happening with the tumor. If the tumor has grown she will perform the biopsy. If the tumor has shrunk she will more than likely not continue with the biopsy.

If done, the biopsy will hopefully yield valuable information about possible new courses of action as well as the possible effectiveness of new drugs and trials currently available.

In the meantime, I will continue to get the Alimta/Avastin combo every three weeks with the next treatment due Friday May 16th. I will also be getting a full CT scan after the next treatment to see if I continue to positively respond to the current regimen.

Carpe Diem.

Wednesday, April 30, 2014

My conundrum

Let me start by thanking Diana for coming with me to my consult with Dr. Brahmer. 

When I was first diagnosed in March of 2008 we had met with Dr. Brahmer to enlist her as my primary oncologist. Back then she offered to put me in a trial. Being a "newbie" to this whole cancer thing, I elected to go somewhere else and get the conventional lung cancer treatment. What's so weird now is that I am back to see what trials are currently available for me to participate in.

Just to be clear, what I am looking for is plan B, plan C etc. The consensus is that as long as the Alimta and Avastin combo is working no changes should or would be made. We won't know if the current regimine is working until I get scanned in about another month.

Here is where it gets weird. I have to have the liver biopsy to gain admission into this possible trial. I also need the biopsy so that the genetic lab I am working with can do a targeted exome gene sequence and test me for ROS1, PD1 and PDL1. This is really technical and advanced stuff and way beyond my pay grade :-) So, the biopsy needs to find some tumor cells to test. 

The flip side is that maybe the liver tumor has already shrunk and there is nothing to extract or test. And here in is my conundrum. Do I want the tumor to grow and therefore get a good sample to test or do I want the Alimta and Avastin to get back to work and shrink the tumors. Hmmm!

How insane is all of this?

Carpe Diem.

Friday, April 25, 2014

Chemo 2 (Round 9)

Let me clear up any confusion with regards yesterdays biopsy non event. Divine intervention? Who knows. We are rescheduled for three weeks from now.

Two things may happen. Firstly, the CT scan before the procedure could show growth of the liver tumor in which case it will be much easier to obtain the samples needed for targeted exome sequencing and other genetic tests. This is good. Or, is it bad that the tumor has grown! Secondly, the scan could be done and show that the tumor is stable or has shrunk. Is it likely? Who knows. So which option is better? I don't know. Lets take a vote...

Im finishing up my chemo session for today. All seems ok. Weight is relatively stable, the bloodwork is fine, my vital signs are ok and the meeting with Dr. Schraeder was good.

This coming Monday I have a consult with Dr. Julie Brahmer at Johns Hopkins. She runs a trial for a new drug that may be very beneficial for me. The genetic testing should help with this option.

Carpe Diem.


Where the hell does this plug in?


Aah, never mind. Julie figured it out. She's the best Oncology nurse a person could want.





Thursday, April 24, 2014

Oops!

Well, I forgot that you could not eat or drink before any kind of sedation. So what did I do? I ate!

The procedure has been rescheduled for three weeks from today.

Here is the irony. The Interventional Radiologist said that maybe the delay was not such a bad thing. She said that the liver tumor was really small and maybe in three weeks there would be more to "sample". The flip side is maybe in three weeks the tumor would have shrunk even more. Positive news I guess.

So I look forward to chemo tomorrow. Yea right!

Carpe Diem.

Wednesday, April 23, 2014

Liver and onions anyone?

Tomorrow I am having another biopsy. This time on my liver. During my last scan the cancer had metastasized to my liver and bones. So I am having the biopsy (once again) to attempt to have some genetic testing done.

The irony is I need the biopsy to yield some cancer for them to test. During my last lung biopsy in December they did not detect any cancer in all five submitted samples. So ultimately I would like this biopsy to fail again but then there won't be anything to test! Oh what a dilemma.

Carpe Diem.

Friday, April 4, 2014

Chemo 1 (Round 9)

I have to admit that today was the first time in a long time that I was a bit afraid. The scan news was not great and there is no way of glossing it over. What is so weird is that I feel great and people tell me I look great. So what the hell is going on inside me?

My bloodwork was good, the protein in my urine was very normal, my vitals were all good and weight was stable. I was really grateful that Diana and Robyn joined me for this chemo session. Mike was at work :-) The meeting with Dr. Schraeder was fine. We discussed the chemo plans as well as the results of the scans. I will be going back on the Alimta and Avastin combo every three weeks and they will be adding another drug (not chemo) for my bone strengthening. Not that "bone"!!!

I also went for the hip pain injection today after chemo and already feel the relief. All in all, a busy hospital/medical day.

I must pass along my deep gratitude and appreciation for all the continued wonderful support from all of you out there. Without this support the past six years would have been extremely difficult and very lonely. What is it that scares me? Simply put, the permanence of death. But, I'm not planning that for a while!

Carpe Diem.


Thursday, April 3, 2014

Tomorrow a new battle begins

I had my PET/CT scans done today and the results were not ideal! Forgive me for not elaborating at this time but I will do that soon enough.

After a wonderful 70 day chemo "holiday" I will be starting back on the Alimta and Avastin combo tomorrow. Am I disappointed? Of course I am. Am I surprised? Not hardly. Not with this shit disease.

F*ck cancer and carpe diem.



Tuesday, April 1, 2014

Upcoming calendar of events

I have my scans scheduled for Thursday April 3rd. I have tentative chemo scheduled for Friday April 4th. I say tentative because if the scans show stable and no spread then I will ask for another couple of months off of all treatment.

In the meantime, my "bionic" hip (right side) continues to do well. However, my left hip has been giving me a sh*t load of pain over the past months. I am really loath to getting another "bionic" hip operation done so in the meantime I'm managing the pain with meds and injections. Oh well!

Carpe Diem.

Wednesday, March 12, 2014

And the winner was...


Me! A 14lb tiger fish caught on the Zambezi river near Mongwe, Zimbabwe.

Carpe Diem.

Monday, March 10, 2014

I've gone fishing

I'm here in Zimbabwe after the usual grueling 17 hour flight(s).

I'm gonna do lots of touristy stuff like fishing on the Zambezi river etc etc.

So, Carpe Diem.

Wednesday, March 5, 2014

Friday, January 31, 2014

Pain? What pain?

In 2007 I had my right hip resurfaced (similar to replaced) due to osteoarthritis. After some initial "complications" it has since worked as advertised thank you. Now my left hip seems to want to join the party. I have been having left hip pain for sometime now but have vowed (sort of) to not have another operation. I have tried different meds but none have been the proverbial Silver Bullet.

So today after having a consult with the interventional radiologist who did my needle biopsy I asked her if she also did pain management injections guided by CT. She said yes as she had just watched the latest video on YouTube. I'm kidding! Seriously, she was able to get me in for the procedure this morning and now here I sit relatively pain free. Even though I realize that this is something that may have to be repeated every two or three months it's better than having the op. I may one day regret having said this. But for now...

Carpe Diem.

Saturday, January 25, 2014

And now for something completely different...

I will not be moving to New York. I am staying in Baltimore for now. Rob will continue her studies (Masters in Occupational Therapy)  in New York and will stay in the apartment on her own. She is fortunate enough to be staying in the same building as Phil and Howard.  

Mike stays with me most of the week but has the luxury of moving between my apartment and Diana's town house. He continues to enjoy his job. 

In the meantime I'm going to enjoy my chemo break and do a bit of traveling. 

Carpe Diem.

Thursday, January 23, 2014

Chemo 23 (Round 8)

The chemo session went well. I got the Alimta and the Avastin. My weight is stable and the blood work was ok. The urine protein went up very slightly but no changes were made to my regimen for this day.

Now for the great news...I am going to be taking a chemo break until April 2nd, 2014. After discussions with my current oncologist, my 2 consultant oncologists and my radiologist consultant they have all agreed that a break would be ok. I will get rescanned on April 1st and that will determine if I can continue my break or get chemo on April 2nd.

What precipitated this request was the report about my needle biopsy that was done on December 11th, 2013. All 5 samples taken from the active area showing up on my PET scan came back cancer free. While this doesn't mean that I am totally cancer free at this time it is overall good news. So...

Definately Carpe Diem.

P.S. Can you say travel time?

Monday, January 20, 2014

This is what the needle biopsy yielded

"January 20, 2014

Dear Mr. Suskin,

The purpose of this letter is to confirm our conversation that took place over the phone last week in reference to the genetic sequencing of recently acquired lung tissue. Upon conclusion of your biopsy on 12/11/13, five (5) core biopsy samples were transported to Champions Oncology’s laboratory. Two (2) of the samples were immediately prepared for shipment to Personal Genome Diagnostics (PGD) for the purpose of whole exome sequencing while the remaining three (3) samples were frozen.

On 12/30/13 I received an email from P60 informing me that the pathologist did not find any tumor in the two initial samples provided. When I informed my scientist of the situation, she had the remaining three core biopsy samples sent to an outside pathologist for review. The plan was to submit whatever sample(s) came back as positive for tumor. We received word last week that the remaining three samples also did not contain tumor. For this reason we are unable to complete whole exome sequencing on your tissue samples.

As you are aware, I have requested that your payment of $”Non of your Business” be returned to your bank account. Of course, should another opportunity arise during which it is appropriate for Champions Oncology to obtain an additional tissue sample, I’d be happy to facilitate such testing again at that time.

Please don’t hesitate to contact me with any questions surrounding the information provided above."

I will explain more soon...

Carpe Diem.

Tuesday, January 14, 2014

This is what the needle biopsy is supposed to yield...

Champions Oncology, Inc. will perform, as a research project, massive genome-wide sequencing. During this process your tumor sample will be compared to your normal tissue (blood) to identify tumor-specific mutations that may be present. Following the sequencing effort, comprehensive bioinformatic analyses will evaluate known cancer genes as well as alterations in the remaining genes.

The whole exome mutational analysis report for deep sequencing will provide comprehensive data on a variety of different genetic alterations in genes. It will include a summary of analyzed sequence data for all exomes sequenced and identify somatic mutations in the tumor tissue provided. In addition, key germline changes will be provided.
The turnaround time for a completed report is approximately 60-90 days from receipt of all samples. A member of the Champions Oncology team will discuss the final report with your physician. The project will be initiated at the time full payment is received. 

The fee for this sequencing research project is.....$Non Of Your Business :-)

Carpe Diem.

Thursday, January 2, 2014

Chemo 22 (Round 8)

Boring! I like boring.

All well today. Vitals and blood work all good and urine protein remains low. Im up a few pounds on the weight. Back to a mean, lean fighting machine at 155lbs.


Carpe Diem.