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.

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!


19 comments:

  1. keep fighting the fight! Steve, you are a true trailblazer for those fighting melanoma!

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  2. Keep the faith. My Dad was diagnosed with stage 3b melanoma. During a CT scan for an unrelated surgery, they found a pulmonary nodule. The radiologist told my Dad it was cancer, as it had grown to 12mm. They were so convinced they went ahead with a lobectomy with the DaVinci system. The pathology came back as scar tissue and negative for melanoma. My Dad just had repeat scans four months later and is still NED. Those nodules can grow, and scans can make it look like it grew as well! I just thought I would share my story. During our wait before the lobectomy I scoured high and low on the internet for a story similiar to our outcome. Much love and prayers to you and your beautiful family. Your husband is amazing in his strength and courage (as are you!)

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    1. Thank you! I hope your father continues to be NED!

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  3. my brother ray is 59 and also has melanoma stage 5... He has been back and forth many times to his doctors. He has tumors in his kidney liver brain and new ones in his small intestine. He has had brain radiation and that has shrunk the 2 tumors there. He remains on steriods to help with headachs caused by presure. She last week one of the tumors punchtured the small intestine and is causing a blockage , normally anybody else would have surgery right away. But the doctors told ray that surgery is not an option, because he has too many tumors. So from this point on options are few. But his choices are: to take Yervoy or Temodar, both can kill him, and make his last months more miserable. Of course he can also do nothing and give himself morphine and excodon for pain. This is by far the very worst thing ever in my life. My parents are 82 and 79 and they have to watch him go through this, so sad. His wife is wonderful loving lady more like a sister thawn sister inlaw to me. I pray all the time, and i will keepm your dear husband in those prayers too. Melonama is so awful , i hope with all the research they will find a cure quickly. Best wishes to you

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    1. I am sorry to hear about your brother. Treatment decisions are definitely very tough to make. Please look to see if he qualifies for Anti PD1 trial. It is very promising.

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  4. Hi my name is Erin 38 year old mom of 3 boys ,Jevon 13 yrs Trevor 11 yrs and Anderson 5 yrs I came across your blog and got caught up and ended up reading the whole years worth anyway . I was diagnosed with stage 4 Melanoma July 2012 I had started out with large tumor inside abdomen spots on liver and lymph nodes . I completed all 4 rounds of Ippi didn't have major side effects little itching and fatigue nothing to bad . My Doctor schedules ct scan about 3 weeks after my last treatment but ended up getting one at my local ER due to shortness of breath about a week after treatment of Ippi ended .shortness of breath had nothing to do with cancer or treatment Doctors are thinking it was anxiety The scan I had at he ER showed that my tumors had grown and I had a few new ones one in my pelvic area which was the largest now and in my lungs . Not very good news . My doctor called me in which is at Dana Farber by the way to get a scan of her own to confirm the cancer has grown and spread they did. she assumed the Ippi didn't work for me and I was not going to respond to seeing that it was getting worse fast . So she decided to get me ready to start a clinical trial that is very promising anti pd1 I believe the chances of that working and lasting longer are like 20% better than Ippi so I was excited to start tests to see if I could participate in the trial had to do a few tests biopsy and new ct scans they are strict about qualifying well as I was there with my signed consent forms for this trial excited my doctor looked at the brand new ct scans and noticed a change in my tumors . Right there disqualified me for the trial because to get in doctor had to prove tumors were the same or worsening . I was a little upset because I was excited and not sure what to think of my tumor changes . They did not shrink at all within the 2 weeks from last ct scan the change she said was they are softer which MAY be a sign I am a late responder with the Ippi .so the same day she decided to start me on Temodar with hopes that this drug will give the Ippi a boost I took 3 pills a day for 5 days ..no side effects it's been a week since I've been done with that and go back for ct scan in 2 weeks and another round of Temodar that's where I'm at now hoping and praying I get some good news fingers crossed meanwhile I will be praying for you and your husband I hope he responds quickly by reading your blogs I see he is quite the fighter stay strong and God Bless u both !!

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  5. Thanks for reading, Erin! Yes, Ipi is known to have a delayed response. Typically the tumors with grow before they shrink. Scary, but it is what it is, ya know? They will not be doing scans until 4 weeks after he completes his final infusion for that reason. If the Ipi does not work, we will also be looking into Anti PD1 or a new Braf inhibitor with MEK inhibitor trial. Both look very promising. The way I look at it, as long as he can keep going long enough to try them all, eventually he will find the right one! I wish you all of the best. (If you add me on Facebook, I can add you to a very awesome group of melanoma warriors!)

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  6. best wishes for your treatment. My husband is 55 was just diagnoxed with melanoma in his brain in several places The worst news. We have our daughter's wedding in April and don't know what to do. They're doing whole head radiation first since there are so many tumors and then Yervoy and maybe targeted head radiation.

    How do you get thru each day dealing with this? That's my problem. I'm being selfish but I need to be strong for my hubby. He never had a primary lesion and they found the first tumor in his lung in May of this year by acccident. Crazy.

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    1. I am sorry to hear about your husband. My husband never had a primary lesion either. They have biopsied a couple of spots, but both were only abnormal but not melanoma. I think it's more frustrating to NOT have a primary. I know many, many warriors with brain mets and could connect you with these people. If you have a Facebook page, there is a button on the home page that will take you to my page. Add me and I will connect you.

      From my understanding, the radiation usually works really well. The tumors may come back, but the radiation will most likely get you guys through your daughters wedding. We have been dealing with melanoma for 2 years now. It was definitely a lot more difficult in the beginning. So many thoughts to go through your head. It gets easier to deal with. You are not being selfish at all, and you DO need to be strong for your husband. I am a member on Facebook of a melanoma caregivers group. That group has been a lifesaver for me. If you would like to be added to the group, please contact me through Facebook so I can get you some more support. You guys CAN do this!

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  7. Hi. My dad was diagnosed with Metastatic Melanoma and has been given the same Yervoy treatment as your husband, 4 treatments, one every three weeks. My questions is how bad were the side effects of the diarrhea and how quickly did they start. His first treatment is this Friday and I was wondering if he will be sick from it right away within one day or it takes a while to kick in. Also, does hydration help? I appreciate any input you can help me with as he is 80 and I am his caregiver. God bless and give your family and husband the best from me, a total stranger :) Amy

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  8. Hi Amy. I am so very sorry to hear about your dad. My husband did not suffer any side effects from Yervoy. He was one of the lucky ones. I know others have and I know it generally takes a while for those side effects to kick in. It doesn't typically happen within a day or so. With your dads age, the likelihood of getting some of the side effects I would imagine is greater. I do not know that for a fact though. If you have a Facebook page, use the Facebook badge on the right side to add me on Facebook. I have some great support groups I could add you to. Hugs, Jennifer

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    1. My husband of 54 has advanced melanoma he had a brain tumour removed 6 weeks ago and is due his 3rd injection of yervoy next week would like to be added to any support groups any one knows about thanks jane xx

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  9. My husband Steve, has been fighting Melanoma for almost 4 years! Chemo, 5 surgeries, radiation, tests, shots, needles, the whole 9 yards. He has just completed his 4th infusion of Yervoy & is still feeling the side effects. He takes Prednisone to control the diarrhea, which is working, but it caused his glucose levels to rise so is having to take pills to control his sugar, as well as take a test every so often to check it. He is having a few good days now but tires easiy & has very little stamina. He is also having a lot of "lumps" come up on different areas of his body! We do not know what this means. He will see his Dr. next week. His Melanoma is in his left lung at present, Stage IV. Has anyone else been plagues with these lumps after their last treatment of Yervoy?

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  10. My husband of 54 has Stage 4 Metastatic Melanoma. He started his first treatment of Yervoy 1 1/2 week ago. He is extremely tired and is pushing himself to keep teaching. This is his 27th year teaching. He noticed another lump appearing at his groin area. He says it is painful. I pray Yervoy is working, but concerned he is getting more lumps. He initially found lump at L armpit area and has spread to 7 tumors in abdomen area. Please let me know if this is normal for Yervoy. We were told it works slow, but is he suppose to get more lumps?

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