20 months NED!!!

I apologize to my blog followers for being such a crappy blogger lately!!! I haven't blogged in months!!  I have received messages on Facebook from readers wanting to know if everything was ok with Steve since I haven't blogged lately.  Everything is indeed good!  Steve is now 20 months NED!!  We have had so much going on in our family that it's been easier just to skip blogging. I keep my family and friends updated, but I know I have so many readers that don't use Facebook and/or aren't friends with me on Facebook. So, I do apologize! 

On May 13, 2015 Steve received the results from his latest scans....NED....No Evidence of Disease!!! Steve's doctor, Dr. Patrick Hwu (MD Anderson), has now suggested that Steve move to 6 month scans.  He is confident that Steve's melanoma will NOT come back, and in the event that it does, there are so many things they could treat him with now that they didn't have when he was diagnosed in 2012.  While this is extremely comforting to hear, we all know that the "black beast" can always come back.  We actually know several warriors that have went 2+ years being NED and then had the melanoma return.  But, we like to live life like melanoma is behind us.  While we will ALWAYS be melanoma advocates, we just want to LIVE!  We have been enjoying traveling, hanging out with friends and family, settling into our home that we bought last year, watching our 4 year old "graduate" Pre-K and just everyday "life" stuff.

As you may have read in my last blog, my older daughter, Sadie was diagnosed with mosaic Turner Syndrome in December of 2014.  All of her medical exams turned out great!  She has none of the problems (as of yet) that many Turner Syndrome patients have (heart, kidney, hearing, etc).  Sadie is 4'8" and will not grow any taller.  That is the average height of a girl/woman with Turner Syndrome.  We took Sadie to a reproductive endocrinologist regarding the fertility issues that Turner Syndrome causes.  Sadie's lab work showed her to be in pre-menopause (at age 13).  We quickly got her started on fertility medication for egg retrieval.  She has been through 2 cycles/retrievals.  Each retrieval yielded one mature egg able to be frozen for future use.  So, she currently has 2 frozen eggs and will likely start another cycle for another attempt sometime next month.  There is a 3 day Turner Syndrome convention in Kansas City later this summer that we are considering attending.  Being such a rare condition, we are hoping to meet some other girls her age that she can keep in touch with over the years.  

Please be patient with my lack of updates.  I will try to update more often, but they will likely just be updates on LIFE :)  Like I mentioned, we will ALWAYS be melanoma advocates.  I still advocate weekly (some may feel like it's daily) on my Facebook page, we have a walk supporting AIM at Melanoma coming up next week in Galveston (feel free to donate here), we are attending a melanoma symposium at MD Anderson in August, we have the AIM at Melanoma walk in Houston in September and I was recently contacted by a very large pharmaceutical company to work with them on some melanoma awareness campaigns.  So, we are still very busy with the melanoma world!!! 

P.S.

If any of my readers need to/want to contact me, you can always reach me through my Facebook page (there is a link in the sidebar).

Tomororw is the big day......

Steve had a CT scan and an MRI today.  He will get the results tomorrow.  We goofed off last night and today after his scans.  It's a strange life we live.  We could be given the worse news ever tomorrow, or we could continue to live our lives with Steve NED (no evidence of disease).  The longer Steve is NED, the "easier" scans seem to be.....the less "scanxiety" there seems to be.  But, there really is no "tricking" ourselves.  We know that just because things have been going well doesn't mean they will continue in that direction.  It's a fine balance between optimism, realism and fantasy land.  But, until we are given other news, we choose optimism.  We are optimistic that the scans will come back ok and Steve will continue to be NED, but in reality we know that things can change in the blink of an eye.  Melanoma is so very aggressive.  So, we have to live in reality as well.

Being goofy.....

Being goofy......

Being goofy.....

Honestly, we have been thinking so little about Steve and thinking of so many around us.  In February we mourned the one year loss of our sweet friend, Jennifer.  My friends Melissa and Sylvia both lost their spouses within the last few weeks.  And, most recently, my friend Kara had surgery on a bleeding brain tumor.  It's been a tough, tough last few weeks in the melanoma community and honestly, that's where our minds have been.

We miss you, Jenn!!

Get well, Kara!!!!

Not only does Steve get scan results tomorrow, but we also say "goodbye" to his doctor, Dr. Kevin Kim.  Steve has been with Dr. Kim since 2012 (when he was diagnosed with stage 4 melanoma).  Dr. Kim and his staff have been amazing.  Dr. Kim is moving to California to practice there.  There will be many, many, many tears shed tomorrow!!!  Regardless of Steve's scan results, tomorrow is going to be a VERY, VERY hard day for us both.  Dr. Kim has been so very patient with me over the last two years.  He lets me ask as many questions as I would like.  (Even when the questions don't necessarily pertain to our situation, he let's me play the "what if" game.)  Steve was given
6-9 months to live when diagnosed.  Dr. Kim and his treatment recommendations have Steve with us today (NED at that!!) 26 months after diagnoses. Dr. Kim will be missed tremendously.

We will miss Dr. Kim more than words can express!!!!

Steve has an ultrasound and 3 Dr. appointments scheduled tomorrow.  I will update just as soon as we get results!  Thank you all for all of your support, prayers, thoughts, messages, texts, calls, etc.  We love you all! <3 <3 <3

6 months NED!!!!

Today is a bittersweet day for our family.  We found out this morning that one of our sweet melanoma friends lost her husband last night to melanoma after a long, hard battle.  Our melanoma family is a very tight knit community and every loss is like losing a family member....so heartbreaking. Today is also 6 months since Steve was given the news that he is NED.  Like I said, a bittersweet day, indeed.

Here is a picture of Melissa, Jeff and their precious babies....RIP Jeff.

Steve was diagnosed with Stage 4 metastatic melanoma in January of 2012.  At that time, he was given 6-9 months to live (this is the typical response from most doctors to melanoma patients when diagnosed).  Can you imagine at age 34 being told you were going to die?  Can you imagine at age 32 being told you are going to be a widow and single mom of 2?  I will never forget that day.  That moment.  After the general oncologist gave us the news, she walked out to give us some time alone.  We held each other and cried and cried and cried.  I spent at least a week crying.

After the initial shock wore off, I threw myself into melanoma research.  I read about melanoma, treatments, trials, read blogs, etc., every waking minute.  In February of 2012, Steve started a grueling round of biochemo at MD Anderson.  Following biochemo, Steve had a major, invasive surgery to remove an adrenal gland and large tumor that was attached to the adrenal gland and intertwined with the vena cava.  After recovering from surgery, Steve was treated with Zelboraf.  After experiencing debilitating side effects and being admitted to the hospital for 11 days with a mystery infection/illness, Steve was taken off of Zelboraf.  The next treatment Steve did was Yervoy (Ipilimumab).  Yervoy is 4 rounds of 90 minute infusions taken once every 3 weeks as outpatient.  Steve did very well on Yervoy.  He had little to no side effects.  And on September 16th, 2013 we got official word that Yervoy did it's job.  Steve is NED!

As we celebrate 6 months, NED, we have to be realistic to the fact that melanoma is a BEAST!  Melanoma can come back at any time.  We are thankful for the "normal" life we have been able to live the last 6-9 months.  During this time, we sold our home and built a new home.  We moved into our new home about 2 months ago.  We did not plan on building a new home for at least 5 more years, but we know we are on borrowed time and need to do anything and everything we want to do while we have the opportunity.

Steve's next scans are on March 30th with results the following day, March 31st.  We hope the results continue to show NED, but are always prepared to hear we need to fight again.  And if needed, that is exactly what we will do....fight again.  "Fall down 7 times, Stand up 8"

MD Anderson Blog

Link to my latest blog for MD Anderson.....

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"3 month check up"

"Three month check up."  It sounds so simple.  It sounds so uneventful.  It sounds so routine. For cancer patients and their families, that could not be further from the truth.  Steve and I have many, many wonderful "melahomies" that understand this, yet we have so many friends and even family that do not have any idea what a "three month checkup" is to us.  They do not know because they have never experienced it.  It is no fault of theirs and we don't think any less of them.  Many people just have not had to walk this path.

So, what are 3 month checkups in our eyes?  Three month check ups are a daunting reminder of the life we now live.  The "3 month" window.  Steve's last scans in September showed him to be NED (no evidence of disease), so we celebrated the last few months by trying to forget about melanoma.  We just acted like it didnt exist.  I have poured my everything into melanoma awareness, fundraising, researching treatments, clinical trials, etc., these past 2 years and frankly I was just worn out.  I felt a little guilty for taking a step back (but definitely not out!) of the melanoma world.  I still read about and keep up with out melahomies, but overall, I have been absent from it all.  I couldn't tell you anything about the latest trials, I couldn't tell you when the next walk is, I'm not sure when the last time I posted melanoma/tanning bed information on my Facebook page.  I just really wanted to forget it all.  But, here it is again.  Our life stands still once again.  What does tomorrow hold for us?  What does next week hold for us?  Do we get to breathe another 3 months?  Will Steve suddenly be doing treatment again?  Will a surgery be in the near future?  So many unknowns that all fall in the hands of one day "3 month check up day".

Steve had his first set of scans this morning at MD Anderson.  He will have another set of scans tomorrow, a dermatology appointment, and then an appointment with his oncologist for results.  We are hoping for continued NED so we can "live" our lives another 3 months.  We are thankful to have great friends that spent the morning with us today at MD Anderson.  Between them and football today, it definitely kept our minds off things.

Scan Day

Today was relatively uneventful.  We had to be at MD Anderson at 7:40am which meant we had to leave the house at 7:00am.  First on Steve's schedule was a CT of his abdominal area.  With this scan, he can not eat for 3 hours prior.  So, we just skipped breakfast altogether. After the CT scan, we caught the tram over to The Rotary House to have breakfast at The Oaks.  Luckily, the buffet was still going because we only had about 30 minutes until we had to be back over to the Mays Clinic for his MRI.  The buffet was not very good.  Most of the food was cold, hard, had been sitting, etc.  Then I about choked when I found out the buffet was $16 per person!!  You've got to be kidding me?!?!?!  I did manage to find a hot Texas shaped waffle and Steve got a nice, fresh omlet.  I don't like eggs, so that wasn't an option for me.  I loaded up on fresh fruit for the most part.  After breakfast, we headed back over to The Mays Clinic for Steve's MRI.  This took a lot longer than I remember.  He does not get an MRI with every set of scans, but it had been a while, so Dr. Kim decided to take a look this time around.  After the MRI, we headed home to watch some football!  We have to be back at MD Anderson tomorrow at 9am.  Steve will have a CT scan of his neck, a dermatology appointment and an appointment to go over the results of his scans.

I will post results tomorrow......

Steve waiting patiently for his CT scan.

AIM at Melanoma poster for this weekends walk. If you would like to sponsor us, you can do so at http://www.aimatmelanoma.org/en/aim-for-action/1158/1159/houston-2013/6567.html#

9 days and counting......

Melanoma has definitely changed our world upside down.  We live our life in 3 month intervals. Steve has scans, we get the results and then we breath a sigh a relief (luckily that is how it has gone so far).  We go home, celebrate and live "normal" lives for about a month.  After about a month, I subconsciously begin thinking about the next scans.  I may not know exactly how many days until scan day, but I am aware it is in a couple of months.  I double check Steve's online portal and make sure they have all of the correct tests and appointments scheduled.  Two more weeks pass.  Now Steve is about 6 weeks out from scans.  At this point, I am no longer celebrating the good news from the last scans, but fearing the worse on the next scans.  For the next month, I watch carefully every move Steve makes.  "Is that cough related to melanoma?"  "Is that fatigue related to melanoma?"  "Maybe I should call and get his scans moved up?"  I feel his lymph nodes.  I feel his side of the bed the moment he wakes up to make sure it isn't drenched in sweat (like it was prior to diagnosis).  Some people (including myself) have coined the phrase "scanxiety".  I am beginning to realize that it is not "scanxiety" at all, but instead this is our new life.  This will never go away.  Today we are 9 days away from CT scans and 10 days away from results.  At this point I am no longer fearful, but anxious (or maybe a combination of both).  Result day can't get here quick enough.  We have the next 3 months of our life to plan; whether it is more treatment or celebrating until the next scans. 

Official results are in.......

I often tell Steve that I have more anxiety waiting for the official scan reports to come in rather than getting the initial scan results back from Dr. Kim.  Dr. Kim usually has only looked over the scans himself and maybe listened to some dictated notes, but the official report is never ready.  This time around was no different.  I have spent the last 8 days checking Steve's online portal (multiple times a day) for his official scan results.  Today, finally, the reports were in.  As always, there is information in the reports that is confusing and we will need to speak with Dr. Kim about and possibly see some different specialists about.

The great news is that it is confirmed that there is no new melanoma, the lung nodule decreased in size about 33% (from 3mm to 2mm), and the clavicular lymph node shrank by about 25% (from 16mm X 16mm to 12 mm X 13mm).  We hope that when we return in September the Yervoy has shrank the tumors even more!

The oddball things on his official reports:

1. There is some cortical thinning in the lower pole of the left kidney.
2. Calcified granuloma is noted on the right. There is coronary artery calcification. 
3. There is some hyperattenuation within the secretions in the frontal sinuses and this may be related to inspissated secretions versus fungal sinusitis.

These things are clearly stated as having nothing to do with disease progression.  The thinning of the lower pole of the left kidney could be due to treatment, but at the same time his kidney functions are fine at this time.  From the little I have read online, as long as kidney function is ok, this is not a problem.  But, I may schedule Steve an appointment with a kidney doctor anyhow.  The calcified granuloma (again, I read very little) does not seem like a big problem, but probably deserves to be checked out more. The issues regarding sinus' and secretions we aren't worried about at all as Steve was sick with a sinus infection or bronchitis when he had his scans. He is cleared up and feeling fine in the sinus'.

Overall, really good news, we will just need to address a couple of issues to make sure he is not in any danger of any kidney, heart, or lung problems. 

I have been invited to participate in a Google+ OnAir Interview regarding melanoma, Steve's treatment, my blog, etc.  I have my first phone call regarding the interview on Friday.  It will probably take a few weeks to get the interview lined up, recorded, edited, etc.  I will post as soon as I have a link!  

Father's Day weekend and our youngest daughter's 3rd birthday!

We'll take it!

Today Steve had a head and neck CT scan at 8:30 am.  In order for us to get to MD Anderson by 8:30 am, we had to have the kids to daycare by 7:30 am.  So, needless to say, our morning started very early.  The CT scan went relatively smoothly with not too much of a wait. 

After the CT scan, we grabbed a quick snack to hold us over until lunch.  Steve can not eat before his CT scans, so he is usually starving by the time they are finished.  His appointment with Dr. Kim to go over results was scheduled for 11:15.  When we arrived to the clinic area, the status board showed that Dr. Kim was running 30-60 minutes late.  This is not unusual.  Dr. Kim is amazing and spends lots of quality time with his patients, so we never mind the wait.  I was very sleepy and actually fell asleep in the waiting room for about 30 minutes or so.  I never do that!!!  (Hope I wasn't snoring!!)  We finally got into a room about 1:15.  Steve's nurse came in and told us that the reports had not been written up yet so she was not sure of results yet.  After a little more waiting, Urvi, the PA came in and told us that everything looked great.  The official CT reports were not in yet but she listened to the dictation and Dr. Kim looked at the scans and A) they didn't see anything new and B) the lymph node and lung nodule had both shrank a little more.  This is great news!  While Steve is still not NED (No Evidence of Disease), it seems that the Yervoy (Ipilimumab) is still doing it's job.  Dr. Kim says that about 10% of Yervoy patients have a long durable response.  Maybe Steve will be in this category?!

Urvi taking a listen to Steve's heart and lungs.

After speaking with Dr. Kim, we left the hospital around 2:30 pm.  We grabbed a quick lunch at Ruggles Green.  I have been trying to eat gluten free and they have an amazing gluten free menu!  By about 3:30 we were on our way to pick up the kids.  Steve fell asleep in the car.  I had a few errands to run and he slept through all of them.  When we got home, he went straight to bed and slept till a little after 7:00pm.  Scan days/result days are always long and exhausting.  Add in the fact that we have been moving for a week straight and you have a couple of very exhausted people! 

Yummy gluten free pizza and the manager came over and gave us a free gluten free brownie with ice cream....yum!!

 

 

 

Dr. Kim is scheduling Steve to come back in 3 months for scans again.  The next set of scans will also include an MRI of the brain.  Melanoma is sneaky and likes to travel to the brain, so we have to be sure to stay on top of that as well.  Ironically, Steve does not see a dermatologist.  Steve has an "unknown" primary meaning he basically just woke up one day with Stage 4 melanoma.  They have never been able to find a mole that they think the melanoma originated from.  On his next visit, he will also start seeing a dermatologist.  Hopefully the dermatologist with map his moles so we can keep a good eye on them.  He has wayyyyy too many for me to keep up with (although I try!).

I hope to not have anything to update the blog with regarding Steve's treatments/scans/etc for the next few months.  However, I will try to post some news articles, advocacy information, etc. 

Thank you to everyone for your love and support!

"Cancer has given me a new outlook on life."

Since Steve and I had 'The Art of Surviving' seminar to attend yesterday and Steve had to be at the hospital at 6:30 am, we decided to stay the night at The Rotary House.  The Rotary House is a hotel owned by MD Anderson and operated by Marriott and is connected to MD Anderson by a sky bridge.  The hotel is only available to MD Anderson patients.  After the seminar, we were too tired to leave for dinner so we had a nice dinner at The Oaks Grille inside The Rotary House.  After dinner, we turned in early to get some sleep before our 6am wake up call.

We got up at 6am and got ready to head over to MD Anderson.  Since it was so early, the shuttles that usually run between the Main building and the Mays Clinic were not yet running. So, we had a nice 1/2 - 3/4 mile walk to Steve's first destination.  Along the way, we were able to stop and let Steve take his picture with his "survivor" banner.  It is survivor week at MD Anderson, and Steve was asked to provide a quote and join other survivors on banners throughout the skywalk/hospital.  What an amazing honor!!  Unfortunately, with melanoma you are never "cured".  We consider Steve a survivor everyday!! 

Steve with his banner and quote.

The skywalk with survivor banners.

Dr. Bogler from The Art of Surviving seminar.  Dr. Bogler has male breast cancer. 

Marisa Mir and her husband.  Marisa works at MD Anderson in the communications department and is a cancer survivor.

Steve's first stop was to have his blood drawn at the blood lab.  At 6:45 am there was no wait and he was in and out in minutes.  Next, we headed upstairs to check in for his abdominal CT scan.  There was a fair amount of people for a Sunday, but Steve was out by 9am.  His CT was scheduled for 9 am, so we were pleased to get out of there early.  After breakfast, we headed to our house and got the last of our things and cleaned up.  Today was the last day at our house and the first of many nights at our apartment.  We are having a new home built and should be in the apartment 6-7 months (sounds fun, huh?)

Breakfast at The Oaks Grill

Good Bye, Glade Bridge Ln!!!

We have been trying to get the apartment in order all night.  Things are everywhere!!! It is a nice distraction from the "scanxiety".  Steve will have a head/neck CT in the morning and then meet with Dr. Kim at 11:15 to discuss the results.  Our hopes are that the cancer is gone!!  We will also accept stable or shrinking tumors.  And, if worse comes to worse and the scans show something new, we have a few clinical trials we are interested in. 

Results tomorrow.............breathe. 

Yippie for Ipi!!

Yesterday and today Steve had CT scans.  Yesterday of his abdominal/pelvic region and today of his neck.  He was not scheduled to have scans until 3-4 weeks after his last Yervoy (Ipilimumab aka Ipi).
We were taken a little off guard when we looked at his schedule and saw that he had scans on his appointment list for this week.  I spoke with the nurse and PA who both agreed it must be a mistake because when on Ipi scans are not done till 3-4 weeks after the last infusion.  They were going to cancel the scans but of course double checked with the doctor first.  The doctor did indeed want the scans done.  I was very confused and worried as to why he wanted these middle of treatment scans when that is not protocol.  As a matter of fact, I could not find one person who had completed Ipi that had middle of treatment scans. 

Steve waiting to get called back for his scans

We saw the doctor this afternoon and we asked why the scans?  He said since Steve's body acted so crazy back in November, he just wanted to be sure that the Ipi was working and that melanoma wasn't sitting there spreading like wildfire.  Yay for a caring doctor that worries about these types of things even though it is not standard protocol. 

The results?  Great!  The clavicular lymph node has shrunk by about 50% (or more - the final report was not ready) and also the few lung nodules he has shrank by 50% or more also!  And BEST of all, NO NEW DISEASE!!!  Yippie for Ipi :)  I stole that from someone and I don't know who.  But I like the sound of it! 

Dinner after results and before 3rd round of Ipi

Steve has his 3rd infusion of Ipi tonight.  We are currently in the waiting room waiting to be called back.  In 3 more weeks he will have the final infusion and then 3-4 weeks after that he will have more scans to see the end result of the Ipi treatment.  I say 50% complete with treatment and tumors are 50% smaller, well that must mean that after the other 50% of treatment the tumors will be gone!!!  (Yes, I know that is not how it works, but that is the plan!!)

Despite Steve's great news today, we have had a very depressing day.  Back in September, Steven and I were invited to attend the Moon Shots announcement at MD Anderson.  We met Brian Rose and his wife, Lupe.  Steve was instantly inspired by Brian.  Brian had the most positive outlook, they were about the same age, and Brian was fighting this disease head on.  When Steve was in the hospital having some problems, Lupe would message me on Facebook to check on me.  They were both just very inspiring to us both.  This morning, Brian Rose passed away.  We were sitting in the lobby waiting for Steve to get called back for his CT scan when we saw the news on Facebook.  I was stunned.  I pointed to the computer and we were both just silent.  Both of our eyes instantly filled with tears.  We have both battled the tears all day.  RIP Brian.   

Ipilimumab AKA Yervoy

It's been a long, exhausting week.  Between battling colds, doctor appointments, scans, Steve's new treatment, Christmas shopping, etc.  It's been very exhausting.  So, I apologize for just getting around to blogging about this weeks appointments and treatment.

Steve had a neck CT scan on Wednesday.  He usually has 2 separate CT scans because the chest CT scan does not get quite high enough to get his clavicular lymph node clearly.  We had to be at the hospital at 6:00am this day (fun fun).  We had the kids spend the night with my mom and we got a room close to the hospital so we didnt have to get up at 4:30am to make it in time!  We also got to meet some good friends for dinner on Tuesday night.  They live over an hour from us, so we were kinda in middle ground and took advantage of it.  We had a great time.

Our welcome gift at the hotel.

Dinner with GREAT friends.

 On Thursday, we had to be back at MDA at 7:45 am for Steve's chest CT scan. It would be nice if 7:45 am meant that was the start time.  Unfortunately; between paperwork, waiting, Steve drinking the barium drink, etc. he didn't actually go back until about 9:45.  He finished up about 10:45 and we headed over to the melanoma waiting room to catch up with a friend who was waiting to be seen and her husband.  I hate to see her in so much pain, but we did have a fun 30 or 40 minute visit.  After our visit we headed down to have lunch in the cafeteria before Steve's 12:15 appointment with his doctor to go over his CT scans.

We got back up to the melanoma waiting area right at 12:15 pm.  They have a board that tells whether the doctor is on time, or how long they are behind.  When we had left to go downstairs for lunch 45 minutes earlier for lunch, it was "on time".  When we got back the board said "1 hour 30 minute" behind.  We expect this to happen sometimes.  The way we look at it is our nurse, PA, and doctor all give us every bit of time that we need.  I read about melanoma several hours a day, so I am always armed with a million questions for Dr. Kim.  Dr. Kim is always patient and takes his time to thoroughly answer my questions.  I am sure he does the same for all of his patients, so it does not surprise me to see when he is behind (although I am sure there are also a million other reasons they can get behind).  Luckily, it only took about 45 minutes to get back, so it was not too bad.

Dr. Kim went over Steve's CT scans and lab work with us.  His lab work looked pretty good, but his platelets were lowered a little.  He was not too worried about this because the CT scan showed that Steve's spleen was still enlarged from his recent viral infection.  The enlarged spleen will soak up the platelets and cause them to appear low.  The CT scans showed that the clavicular lymph node had increased in size.  It went from 2.0 cm x 1.8 cm to 2.7 cm x 2.5 cm.  The pulmonary nodule that we were not sure was melanoma or not had increased in size therefore confirming that it is almost definitely melanoma also.  That spot had increased from 5mm to 9mm.  He also has a few small jugular lymph nodes that are very small but have increased in size.  I am not sure of the measurements of those.  They were very small though.  We thought these jugular nodes were new, but apparently we just overlooked these on the original scan and they had never changed size. 

We were not surprised by the growth of the lymph node/pulmonary nodule.  He had not been on any treatment for over 2 weeks and we could feel the lymph node growing.  We were crossing our fingers for nothing new on the scans, and there wasn't.  So, that was the best news we could get! 

After discussing the scans we moved on to discussing treatment.  We already knew he would be starting Ipilimumab/Yervoy (an immunotherapy) and Dr. Kim ad discussed starting Temodar (a chemo) along with the Yervoy.  Steven and I had went back and forth on trying to decide whether or not to use the Temodar with the Yervoy.  Dr. Kim said that in a very small study it had shown to have better results than Yervoy alone.  One might assume that would make us automatically agree to the Temodar.  We still were not 100% sold.  Chemo is not good for your body.  Yervoy is an immunotherapy.  It is used to make your immune system stronger to hopefully have your body fight the melanoma on its own.  Chemo weakens your body and kills cells.  Temodar also crosses the blood brain barrier (meaning it will reach the brain unlike many other drugs).  Steve does not have brain tumors and never has.  Dr. Kim also said that the Temodar would not prevent the melanoma from spreading to the brain.  This kind of made the decision a little (and only a little) easier for us.  If the Temodar crosses into the brain, it could kill some of Steve's brain cells.  For such a small increase in results and only in a very small sample of people, it just did not seem like the right path to go down.  Also, Temodar messes with your blood counts and Steve already has lowered platelets. 

Dr. Kim agreed that these were all valid concerns and said he would leave it up to us if we wanted to add Temodar in the next round.  After we finished up with Dr. Kim, we headed down to the infusion center for Steve to get his first dose of Yervoy.  We got into an infusion room around 4:30.  After getting hooked up to the IV, pre meds, more paperwork, the actual 90 minute infusion, and observation time after the infusion, we did not get out of the hospital till around 7:30 pm.  It was definitely a long 12 hour day at MD Anderson.

Steve getting ready for round 1 of Yervoy. 

Getting the IV.

Yervoy is running!

The side effects of Yervoy are supposed to very minimal.  There are only 4 listed "common" side effects: fatigue, skin rash, itching and diarrhea.  There are some much more serious side effects that can occur: colitis, liver problems, inflammation of nerves, inflammation of eyes, etc.  Hopefully, Steve will tolerate the treatment well and we will be able to lead a semi "normal" life while he is on this treatment.  Unfortunately, "normal" was not in our vocabulary when he was on Zelboraf.  The treatment of Yervoy will be four 90 minute infusions every 3 weeks.  About a month after the final infusion Steve will have new scans to see how the treatment is working.  Our hopes are that the Yervoy shrinks his current melanoma areas and that nothing new pops up.

Yervoy works slowly, since it is an immunotherapy.  The Yervoy can inflame things and make things worse before they get better.  The thoughts are that the responders will have a long term response to this treatment.  I asked Dr. Kim what happens if he is a responder?  Dr. Kim says he will just get scans every 3 months.  If he is not a responder, we will have to figure out what approach we want to take next.  It will be a lonnnng 4 months until treatment is complete and we have scans that show whether or not he is responding to the treatment.

On January 3, 2012 Steve had the biospy which confirmed metastatic melanoma which was later to be determined to be stage 4.  Survival rates for stage 4 melanoma are grim.  We have had our fair share of ups and downs this past year.  But one year later (almost), Steve is still here.  He is doing fine and he is still only battling his original spots of melanoma.  Nothing new in a year!  We will take it! 

We would like to wish everyone a very Merry Christmas and Happy New Year!