I apologize to those who keep up with results and information through the blog only that I am just getting around to updating. It has been a busy last week with appointments and Spring Break. Wednesday 3/13/13 Steve had to be at MD Anderson at 7:30 am for a CT scan of his neck. The CT of his abdominal area does not go that high, so they specifically scan his neck separately in order to get a clear view of his lymph node in his neck. After the CT scan we had a little time to kill before his MRI appointment. We went and had breakfast at House of Pies. (Pies yummy, breakfast....meh) After breakfast we headed over to Starbucks or some coffee and so Steve could try and work a little before his next appointment. After about an hour at Starbucks we made our way back to the hospital. Steve had his MRI and we were on our way.
Thursday, 3/14/13, we headed back to MD Anderson at 7:30 am. Steve had an abdominal CT scan this day. This one takes longer than the neck because he has to drink the barium drink and wait an hour to start the scan. He doesnt have to drink the barium drink with the neck CT, they just inject him only. While Steve was getting his abdominal CT scan, I headed downstairs to meet up with a friend, Kara (and her mom, Beverly) who I had recently met online through this blog. She was recently diagnosed with Stage IV melanoma and is set to start treatment in the next week or so. Kara is super sweet and I can tell we would be great friends!! Did I mention she is from New Orleans? Did I mention she is a Saints fan? I see a friendship in the works here!
After Kara got called back for her appointment, I headed back upstairs to wait for Steve. He finished around 10:30. We went upstairs to check to see if Dr. Kim was on time or not because Steve (and me for support) were fasting and needed to get some breakfast. Our appointment was scheduled for 11:00 and it showed Dr. Kim was running 30 minutes behind. We walked over to The Rotary House and had a nice breakfast at The Oaks restaurant. While we were waiting on breakfast we got a call from our realtor. We had recently put our land up for sale and she was calling us with an offer. After a quick negotiation, we accepted an offer and are set to close on the 25th of this month. Yay!
After breakfast, we headed back over to wait for our appointment with Dr. Kim. By this time he was running an hour and a half behind. We were able to sit in the waiting room and visit with another couple that I also was connected with through my blog. "E" and his wife "K" were also waiting to see Dr. Kim. "K" is recently stage IV diagnosed also. She is getting opinions from several hospitals/doctors and trying to decide which treatment route she wants to take. Great couple and very fun. Oh yeah, they are from Vegas. Hmmm, another good match for friends for us :)
We finally got in to see Dr. Kim (I never, ever, complain about the wait. Dr. Kim and his staff do NOT rush and answer all of my 50 million questions that I manage to come up with, so I am sure it is people like me making him behind :) ) We were hoping to hear that Steve was "NED" (no evidence of disease). However we did not. BUT, it is still great news. Steve still had no new disease and his current diseased areas had shrank by another 40%-50%. Also, another thing we have to keep in mind is that Yervoy continues to work even after you stop it. Most people are scanned 4-5 weeks after the last infusion for that reason. Steve was scanned only 3 weeks after the last infusion. So, it is possible that had we of waited 4 or 5 we would have seen even more shrinkage.
The "plan" from Dr. Kim is for Steve to come back in 3 months for scans. While this may be the route we take, we are also looking to try and get into an anti PD1 trial. This is a new drug that has had some really great results. The results are usually long term and sometimes complete responses. It is very hard to get into these trials for many reasons. But the main reason is that they require you to have failed a treatment. Steve has not really failed any of his prior treatments. So, it will be difficult, but I will be focusing a lot of attention next week on calling doctors/hospitals to try and find a spot for him. The Anti-PD1 has shown even greater response when paired with Yervoy. If we could get into one of these trials ASAP it has the potential to work some real magic!
If we are unable to get into the trial, we will have to sit and watch scans every 3 months and decide if that is the route we want to take and/or if we want to look into another trial/treatment. Lots of big decisions coming our way. BUT, Steve is doing great and tumors are looking good. We just don't want ANY tumors!
My husband Steve was diagnosed with Stage IV Melanoma in January of 2012. When he was diagnosed, we immediately began reading melanoma blogs to help get an idea on what to expect with treatment, treatment options, to have some hope, etc. We are hoping that our blog will offer these things to others in return. Please follow sun safety! Use your sunscreen! DO NOT USE TANNING BEDS! Check your skin, and see a dermatologist annually.
Sunday, March 17, 2013
Thursday, February 21, 2013
4th Ipi Infusion COMPLETE!
Steve had his 4th and final Ipi (Yervoy) infusion today!! Yay!!!
Before the infusion, Steve had an appointment with his doctor (Dr. Kim). It was pretty short and sweet. The doctor felt Steve's neck and also was unable to find the lymph node that we could previously easily find. Dr. Kim seemed pretty confident overall in how Steve's treatment is progressing. He gave us the choice to wait 3, 4 or 5 weeks for scans. Even though waiting is nerve racking, I kind of wanted to wait 5 weeks because some of the effects of Yervoy are delayed. Dr. Kim said to just go ahead and come in 3 weeks. So, we will see how everything looks in 3 weeks.
When we get the results in 3 weeks we will know more of "What's next?". If the scans come back with no new disease and/or things are stable and/or gone, Dr. Kim's plan would be to come every 3 months for scans. I am not so sure this will be OUR plan though (shhhh, I haven't told Steve yet!). There are a few trials that are maintenance programs for Stage 4 NED (no evidence of disease) or Stage 4 stable patients. I may look into one of those depending if they say he is NED or just stable. I don't expect scans to show any new disease since the last scans a few weeks ago showed no new disease and current disease had shrank by @ 50%. But one thing I have learned.....don't "expect" anything from melanoma except for it to take you by surprise!!! So, new disease is always a possibility unfortunately. That's why I don't really like the "sit and wait" approach. Maybe with NED, but not with "stable". To me "stable" means that we need to keep fighting till we hear NED!!
Anyhow, I'm super tired and heading off to sleep! Here are a few pictures I snapped today....
Before the infusion, Steve had an appointment with his doctor (Dr. Kim). It was pretty short and sweet. The doctor felt Steve's neck and also was unable to find the lymph node that we could previously easily find. Dr. Kim seemed pretty confident overall in how Steve's treatment is progressing. He gave us the choice to wait 3, 4 or 5 weeks for scans. Even though waiting is nerve racking, I kind of wanted to wait 5 weeks because some of the effects of Yervoy are delayed. Dr. Kim said to just go ahead and come in 3 weeks. So, we will see how everything looks in 3 weeks.
When we get the results in 3 weeks we will know more of "What's next?". If the scans come back with no new disease and/or things are stable and/or gone, Dr. Kim's plan would be to come every 3 months for scans. I am not so sure this will be OUR plan though (shhhh, I haven't told Steve yet!). There are a few trials that are maintenance programs for Stage 4 NED (no evidence of disease) or Stage 4 stable patients. I may look into one of those depending if they say he is NED or just stable. I don't expect scans to show any new disease since the last scans a few weeks ago showed no new disease and current disease had shrank by @ 50%. But one thing I have learned.....don't "expect" anything from melanoma except for it to take you by surprise!!! So, new disease is always a possibility unfortunately. That's why I don't really like the "sit and wait" approach. Maybe with NED, but not with "stable". To me "stable" means that we need to keep fighting till we hear NED!!
Anyhow, I'm super tired and heading off to sleep! Here are a few pictures I snapped today....
This is how we pass our time while we wait.
More waiting!! Planning on wrapping the room next time.......kidding D!
Ipilimumab is HERE - 4th and final!
Getting his drugs and playing on the Ipad
All finished up.....ready to eat!
Ooops, we forgot the before picture.....we were starving!!! Ahi Tuna appetizer
Fish taco and cajun chips
French Dip and a salad
Thursday, January 31, 2013
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.
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!
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.
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.
Thursday, January 3, 2013
1 year Cancerversary!!
What is a "cancerversary"? It means so many different things for so many different people. Some people use it as the anniversary of hearing the words every warrior wants to hear "NO EVIDENCE OF DISEASE" (NED), some people use it as the anniversary of hearing the words no one wants to hear "You have cancer", some people use surgery dates, it is a little different for everyone.
Well, today is Steve's "CANCERVERSARY"!! One year ago today, Steve had a fine needle biopsy that later confirmed metastatic melanoma. Later it was confirmed even further that it was Stage IV melanoma. Survival rates for Stage IV melanoma are grim. Many reports state less than one year. When Steve and I were told, we both sobbed. How could this be? Why? This can't be happening?! So many thoughts raced through our minds.
Over the last year, Steve has had a grueling round of biochemo which entailed him being hospitalized for a week every 3 weeks, a major surgery (and hospitalization) to remove his right adrenal gland and the adrenal tumor attached to it, he has taken Zelboraf (with horrible side effects), he was hospitalized with a very serious virus for 11 days, he had numerous blood transfusions, platelet transfusions, and most recently has started a new drug (Yervoy). Today Steve went back into the office for the first time in several months. How fitting that he was able to return to work on his 1 year "Cancerversary".
I am so proud of Steve. He has had many ups and downs over the past year. But, he is still here fighting. The melanoma that he started with last year is the same melanoma he currently has (minus the adrenal gland). We would have loved to have him NED, but everyone is different and you just have to find the right medication while beating the clock. Steve's current medication is a 90 minute infusion every 3 weeks for 4 rounds. Then 4 weeks after the last round he will have scans. That is a total of FOUR months before we know if the current treatment is working or not. That is a long time to wait. But, like I try and remind Steve every day, he is fighting to live......so we are living! We may not be living the same life we were a year ago, but we are living.
We still find the time and energy to celebrate holidays and birthdays with family. We attended MD Andersons Moon Shots Announcement. We still try and squeeze in some dinner dates with friends. We were able to take the kiddos on a mini vacation this summer. Steve and I were able to celebrate our 6th wedding anniversary in New Orleans and go to our first Saints game. Steve and I have been to the casino's a few times during the last year. We had poker at our house once over the last year. We were able to take the kids looking at Christmas lights. Sure, there is plenty we wanted to do but couldn't, but we are still living. Steve is still fighting.
In 3 1/2 months, if we find out that this current treatment is not working, we will move on to the next one. I eat, sleep and breathe melanoma and have the next two treatments lined up if needed. We are lucky that there is so much research and advancement going on in the melanoma world. There is still a long, long, long way to go. But, they are so much further along than even a couple of years ago.
Thank you to everyone who has been there for us over the past year, we sincerely appreciate EVERYTHING and EVERYONE!
Well, today is Steve's "CANCERVERSARY"!! One year ago today, Steve had a fine needle biopsy that later confirmed metastatic melanoma. Later it was confirmed even further that it was Stage IV melanoma. Survival rates for Stage IV melanoma are grim. Many reports state less than one year. When Steve and I were told, we both sobbed. How could this be? Why? This can't be happening?! So many thoughts raced through our minds.
Over the last year, Steve has had a grueling round of biochemo which entailed him being hospitalized for a week every 3 weeks, a major surgery (and hospitalization) to remove his right adrenal gland and the adrenal tumor attached to it, he has taken Zelboraf (with horrible side effects), he was hospitalized with a very serious virus for 11 days, he had numerous blood transfusions, platelet transfusions, and most recently has started a new drug (Yervoy). Today Steve went back into the office for the first time in several months. How fitting that he was able to return to work on his 1 year "Cancerversary".
I am so proud of Steve. He has had many ups and downs over the past year. But, he is still here fighting. The melanoma that he started with last year is the same melanoma he currently has (minus the adrenal gland). We would have loved to have him NED, but everyone is different and you just have to find the right medication while beating the clock. Steve's current medication is a 90 minute infusion every 3 weeks for 4 rounds. Then 4 weeks after the last round he will have scans. That is a total of FOUR months before we know if the current treatment is working or not. That is a long time to wait. But, like I try and remind Steve every day, he is fighting to live......so we are living! We may not be living the same life we were a year ago, but we are living.
We still find the time and energy to celebrate holidays and birthdays with family. We attended MD Andersons Moon Shots Announcement. We still try and squeeze in some dinner dates with friends. We were able to take the kiddos on a mini vacation this summer. Steve and I were able to celebrate our 6th wedding anniversary in New Orleans and go to our first Saints game. Steve and I have been to the casino's a few times during the last year. We had poker at our house once over the last year. We were able to take the kids looking at Christmas lights. Sure, there is plenty we wanted to do but couldn't, but we are still living. Steve is still fighting.
In 3 1/2 months, if we find out that this current treatment is not working, we will move on to the next one. I eat, sleep and breathe melanoma and have the next two treatments lined up if needed. We are lucky that there is so much research and advancement going on in the melanoma world. There is still a long, long, long way to go. But, they are so much further along than even a couple of years ago.
Thank you to everyone who has been there for us over the past year, we sincerely appreciate EVERYTHING and EVERYONE!
Friday, December 21, 2012
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.
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.
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!
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! |
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!
Thursday, December 6, 2012
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.
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.
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.
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.
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!!
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.
Monday, November 26, 2012
Answers ~ Sort of......
Steve had his follow up visit with his melanoma doctor, Dr. Kim, today. This was a follow up to his 11 day stay in the hospital after an "unknown" virus attacked him. Before the virus (or maybe it was the start of the virus, who knows?) Steve had started Zelboraf and then stopped because he was so ill.
When we left the hospital after 11 days, we had no answers. Every team you can think of at MD Anderson had their hands in Steve's case. Steve had many procedures (spinal taps, bone marrow biopsies, lymph node biopsies, more vials of blood that could ever be counted, etc.) to try and find what was attacking his body. Unfortunately, if the clear cut every day virus' aren't found, it takes a very long time to get the results back. MD Anderson did not even do some of the tests. For some of the tests, there is only one lab in the entire United States that does that type of testing. So, many tests were sent off and then we just had to play the "wait and see" game. Since Steves blood levels were improving on the anti-viral medications that they gave him and his pain had stabilized, they let us wait from home (mostly so Steve was not hospitalized for Thanksgiving).
Today, we found out 2 tests that come back positive. One is EPV or Epstein-Barr Virus this is in the same family as mono. Although the mono test came back negative, a different test confirmed a positive EPV infection. The spinal fluid also tested positive for HHV-6. The virus itself is very common, but it is EXTREMELY rare for it to invade your spinal cavity. This could have been very deadly if we had not caught it so soon. It could have envaded his nervous system and spread to his brain which could have been deadly. Luckily, the infectious disease doctors got him started on an anti-viral right away. They had actually discussed at one point waiting for results to come back before they started him on an anti-viral so they didn't start him on the wrong one and have to switch. Thank goodness they went ahead and canned that idea! Both of these viruses are very common and lie dormant in about 90% of people by an early age. Weakened immune systems, trauma, mental stress, and some medications can cause a flare up. We will never know 100% what caused the flare up. I think it was the Zelboraf, but Steve was also extremely stressed at the time due to work and bad side effects from the Zelboraf, so we will never know.
Anyhow, now that we know what caused it, that is behind us. He will finish up his anti-viral medication and we will stay on top of any immune related issues.
Now, on to the melanoma. Since the FULLY checked every inch of his body, inside and out while he was hospitalized, we have a good idea on what is going on with his melanoma. The Zelboraf had significantly shrank his lymph node and also lowered the SUV from a 12 to a 4 (this is a number used to measure how active the tumor is). He has been off the Zelboraf about a month now and the lymph node is back to its original size. BUT, it is still his only melanoma.
So, where do we go with treatment? I went in knowing that Dr. Kim would suggest putting Steve back on the Zelboraf, so I was fully prepared with all my questions. I highly respect Dr. Kim and even though I had planned on shooting it down, after he went over all of the things I had not thought about, I do agree that restarting the Zelboraf is the best bet right now.
We have other options (or so I thought - haha -you all know I think I know everything!). Surgery? Well no, because his immune system is OBVIOUSLY weak right now and that would be too risky. Yervoy? Why start something that we are unsure of when we KNOW the Zelboraf was working? Finding an opening for the Anti-PD1 trial? This was my choice. Thankfully, Dr. Kim is smarter than me :) If we get Steve enrolled in the Anti-PD1 trial and he has some sort of flare up of a virus like he just did, he would get kicked out of the trial. Once you are kicked out of the trial, you CAN'T get back in. You have to wait until the FDA approves the treatment, but what if that never even happens? We DO NOT want to lose our chance at the Anti-PD1 treatment. It is the latest and greatest. Also, TIL treatment is another treatment out there. But, it involves chemo, and depleting your body and making you very susceptible to infections, viruses, etc.
So, it makes sense to re-try the Zelboraf. Steve started it tonight. It is a reduced dose. Only 2 pills in the am and 2 in the pm. He originally started at 4 in the am and 4 in the pm. Hopefully his body can tolerate the Zelboraf at this dosage and maybe even eventually be able to up the dose a little. He will be seen every 2 weeks for a while to keep a close eye on all of his blood counts and everything, although his scans will still be every 8 weeks (I think? Maybe 6?) IF the Zelboraf is not working, stops working, or is too hard on his body, then we will probably move along to Yervoy. If that does happen, they will probably go ahead and surgically remove the lymph node and harvest it for the TIL treatment. At that point they would expect Steve to be fully recovered from the virus and his immune system doing better over all and able to handle the TIL treatment.
So, that is where we stand for now. I will update soon and let everyone know how the Zelboraf is going. The good thing is it causes shrinkage very quickly, so I should be able to feel his neck in a few days and know if it is working or not.
Thanks for all of the calls, texts, cards, emails, prayers, etc. Love you guys!
When we left the hospital after 11 days, we had no answers. Every team you can think of at MD Anderson had their hands in Steve's case. Steve had many procedures (spinal taps, bone marrow biopsies, lymph node biopsies, more vials of blood that could ever be counted, etc.) to try and find what was attacking his body. Unfortunately, if the clear cut every day virus' aren't found, it takes a very long time to get the results back. MD Anderson did not even do some of the tests. For some of the tests, there is only one lab in the entire United States that does that type of testing. So, many tests were sent off and then we just had to play the "wait and see" game. Since Steves blood levels were improving on the anti-viral medications that they gave him and his pain had stabilized, they let us wait from home (mostly so Steve was not hospitalized for Thanksgiving).
Today, we found out 2 tests that come back positive. One is EPV or Epstein-Barr Virus this is in the same family as mono. Although the mono test came back negative, a different test confirmed a positive EPV infection. The spinal fluid also tested positive for HHV-6. The virus itself is very common, but it is EXTREMELY rare for it to invade your spinal cavity. This could have been very deadly if we had not caught it so soon. It could have envaded his nervous system and spread to his brain which could have been deadly. Luckily, the infectious disease doctors got him started on an anti-viral right away. They had actually discussed at one point waiting for results to come back before they started him on an anti-viral so they didn't start him on the wrong one and have to switch. Thank goodness they went ahead and canned that idea! Both of these viruses are very common and lie dormant in about 90% of people by an early age. Weakened immune systems, trauma, mental stress, and some medications can cause a flare up. We will never know 100% what caused the flare up. I think it was the Zelboraf, but Steve was also extremely stressed at the time due to work and bad side effects from the Zelboraf, so we will never know.
Anyhow, now that we know what caused it, that is behind us. He will finish up his anti-viral medication and we will stay on top of any immune related issues.
Now, on to the melanoma. Since the FULLY checked every inch of his body, inside and out while he was hospitalized, we have a good idea on what is going on with his melanoma. The Zelboraf had significantly shrank his lymph node and also lowered the SUV from a 12 to a 4 (this is a number used to measure how active the tumor is). He has been off the Zelboraf about a month now and the lymph node is back to its original size. BUT, it is still his only melanoma.
So, where do we go with treatment? I went in knowing that Dr. Kim would suggest putting Steve back on the Zelboraf, so I was fully prepared with all my questions. I highly respect Dr. Kim and even though I had planned on shooting it down, after he went over all of the things I had not thought about, I do agree that restarting the Zelboraf is the best bet right now.
We have other options (or so I thought - haha -you all know I think I know everything!). Surgery? Well no, because his immune system is OBVIOUSLY weak right now and that would be too risky. Yervoy? Why start something that we are unsure of when we KNOW the Zelboraf was working? Finding an opening for the Anti-PD1 trial? This was my choice. Thankfully, Dr. Kim is smarter than me :) If we get Steve enrolled in the Anti-PD1 trial and he has some sort of flare up of a virus like he just did, he would get kicked out of the trial. Once you are kicked out of the trial, you CAN'T get back in. You have to wait until the FDA approves the treatment, but what if that never even happens? We DO NOT want to lose our chance at the Anti-PD1 treatment. It is the latest and greatest. Also, TIL treatment is another treatment out there. But, it involves chemo, and depleting your body and making you very susceptible to infections, viruses, etc.
So, it makes sense to re-try the Zelboraf. Steve started it tonight. It is a reduced dose. Only 2 pills in the am and 2 in the pm. He originally started at 4 in the am and 4 in the pm. Hopefully his body can tolerate the Zelboraf at this dosage and maybe even eventually be able to up the dose a little. He will be seen every 2 weeks for a while to keep a close eye on all of his blood counts and everything, although his scans will still be every 8 weeks (I think? Maybe 6?) IF the Zelboraf is not working, stops working, or is too hard on his body, then we will probably move along to Yervoy. If that does happen, they will probably go ahead and surgically remove the lymph node and harvest it for the TIL treatment. At that point they would expect Steve to be fully recovered from the virus and his immune system doing better over all and able to handle the TIL treatment.
So, that is where we stand for now. I will update soon and let everyone know how the Zelboraf is going. The good thing is it causes shrinkage very quickly, so I should be able to feel his neck in a few days and know if it is working or not.
Thanks for all of the calls, texts, cards, emails, prayers, etc. Love you guys!
Subscribe to:
Posts (Atom)