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!

What's next?

It has been a little while since I blogged.  Thank you for all of the calls, texts, messages, etc wanting to check on Steve since I had not blogged lately. 

I put off blogging because things went downhill quickly with the Zelboraf and I knew we would find out at today's appointment what plan B would be.  I figured I would just put it all in one blog. 

Steve re-started the Zelboraf on Tuesday evening, 11/27/12.  He was only started on a half dose (2 in the am and 2 in the pm) due to him just getting over a virus and because of his prior record of side effects on Zelboraf.  The same evening that he started he became EXTREMELY red and rashy.  He immediately felt like he had a sunburn.  His skin did not hurt to touch, but he felt chilled and his skin felt like it was on fire.  He was also still taking his antiviral medications and some other supplements.  We aren't sure if it was the Zelboraf, or a combo of all of the medications together, but he vomited that night also.

 Within an hour so of his first half dose of Zelboraf (pictures do not do the redness justice)

 Again, pictures do not do the redness justice.  He was FIRE ENGINE red!!

Wed-11/28 Steve took the morning dosage of Zelboraf.  His skin became more red than the night before (if even possible), he started having nerve pain in both legs and also he started having visual disturbances.  The pm dosage brought chills, more nerve pain, anxiety, tightness in his chest, and overall aches, pains, and flu like symptoms.

Thu - 11/29 After the morning dose of Zelboraf, the achiness, chills, and red/flushed body continued.  The joint pain also hit really hard this day.  He started on Celebrex and Tramadol for the joint pain.  This continued through the day/night, but he also got nauseated again this evening.

Fri - 11/30 Other than joint pain, Steve had an ok day this day.  But, after the evening dose he vomited and started running a 101. 4 fever.  By now the joint pain was excruciating. 

 Steve (and Ashlynn) trying to "walk off" some of the joint pain.  This was as high as he could lift his arms and he had absolutely zero use of his hands.

Sat - 12/1 By Saturday, the joint pain was so bad that Steve could barely even eat.  His jaw (a joint) had so much pain that he could only open his mouth about a half an inch.  He was eating pudding so he did not have to chew.  His hands were basically useless.  I had to pick him out out of his chair because he could not use his hands or legs to get himself up.  (Mind you Steve is 6'4 and weighs 250 lbs and I am 5'2" and weigh 125 lbs).  I had to dress and undress Steve.  I had to give him a shower.  He could not lift his arms more than a couple of inches. 

 No matter how much lotion we used, his feet stay dried and cracked.  They were also ridiculously swollen.  They looked like they could 'pop' at any moment.  Ashlynn barely grazed his right foot with hers and it cut his foot open.

Sun - 12/2 Sunday morning I called the doctor on call and asked if he should continue and just hope things improved???  The on call doctor said that he should absolutely not be feeling that bad on a half dose and to discontinue the Zelboraf.  This doctor said once the pain went away to start on 1 pill a day and slowly build his tolerance up.  (We knew that this is not what his doctor would want to do.)  We discontinued and I called his doctor on Monday morning and got an appointment for today.

We saw his doctor (Dr. Kevin Kim) today.  Dr. Kim suggested that Steve meet with the infectious disease team next week to go over the virus that he had and make sure that he does not need any follow up care and/or tests.  He will have that appointment on the 14th.  Then, on the 19th and 20th he will have scans to get starting measurements of any tumors, swollen lymph nodes, etc.  (We are hoping that the only measurable disease is the clavicular lymph node.  There has always been a very small questionable area on his lung also - that did not show up on the last PET scan though).  On the 20th he will sign consents to start his new treatment. 

The new treatment will be Yervoy (Ipilimulad) with Temodar.  Yervoy was approved by the FDA in 2011.  It is a 90 minute IV infusion once every 3 weeks for a total of 4 treatments (12 week treatment).  The Temodar is a chemotherapy in pill form.  It is taken daily while on the Yervoy.  The Yervoy treatment can be taken with or without the Temodar.  Temodar is used mostly to treat brain metastis.  As of Steve's last MRI a few weeks ago, he has no brain mets.  However, the Tremoar is also used as a maintenance type drug to prevent brain mets and the 2 drugs together have showed overall better response rates.  Hopefully, overall Steve will have less side effects than the Zelboraf.  We know he will still have side effects, we know that no medicine come side effect free, but quality of life is important.  If only 5 days on the Zelboraf and Steve was pretty much crippled, it is not really something we not the doctor think that he should continue on. 

Another BRAF drug should be approved by the FDA by early next year (Dabrafenib).  This will give Steve yet even another drug option.  Also, keep in mind that although the side effects are horrible, Steve showed GREAT response on Zelboraf.  So, if ever needed, he can technically go back on Zelboraf in an emergency situation.  He would just have to suffer through all of the debilitating pain and side effects.  In a life and death situation, he wouldn't think twice about suffering until he found something else to try.  However, we and the doctor feel there is no need to suffer the way he was suffering on Zelboraf when he DOES have other options right now. 

Although I do not enjoy the fact that Steve is on NO treatment right now, and will not be for 2-3 weeks; I do enjoy the fact that his body will get a break.  We will be able to take the kids to see Santa, go to Festival of Lights and have an enjoyable, PAIN FREE, Christmas.