From 3 to 4

[msue5]

Hi all

Now stage 4. 2 of the 4 thoracic nodes that were removed were positive for melanoma. The other 2 were reactive nodes. I don’t know the plan yet but the surgeon said he knows that some melanoma was left behind. The nodes were matted and adhered to my aorta. They are testing the nodes for Braf even though my original tumor was neg. I guess there is a few false Negs. I think I will end up on Yervoy. It will be interesting to see what happens with my lupus. I don’t recall reading much here about spread to the thoracic nodes. At least it has not affected any organs yet. I will post again when I know more about the plan.

Mary Sue

[Catherine Poole]

Mary Sue,

You aren’t alone on this journey and there are many here hoping for great treatment plan for you. Let us know what they come up with and any questions you might have.

Hang in there!

[msue5]

Thanks Catherine. I have an appt with my local Med Onc tomorrow and at least I can get a plan started. I have a lot of questions and thanks to your forum for giving me the knowledge to even know what to ask. I’m having a hard time being sad because my house has no privacy because we have a son and daughter and grandson living with us. My 21 yr old son has had the hardest time with this and often his girlfriend will tell me to talk to him because he’s upset. I know a positive attitude is important but I also feel like I need to be sad. Its not realistic or good for me to keep things bottled up. So I listen to music a lot. That is my form of meditation. I’ll post when I have more info.

Mary Sue

[Catherine Poole]

Your son must love you very much and maybe you should be honest with him and tell him you are upset too. Sharing feelings helps to normalize them. Counseling is also very useful to go through these stressful times. We’re here when you need us and I’m happy we’ve armed you with good questions.

[Shirley Z]

Hi Mary Sue,

I think of you every day. Getting to know you through our private e-mails has shown me how much you do for your family. Its hard when the person that has always done so much for others becomes ill. It has to be a tremendous shock to your family. Everyone has that feeling of disbelief.

You are right! It has to be so very difficult to stay positive when things have happened so fast and you are still reeling from it all. I’m glad you enjoy your music.

A good cry can sometimes make you feel better. Maybe that is what you and your son need together. He loves his mom. You are doing an amazing job of dealing with this. Keep us posted. I’m still praying for you every day.

Love,

Shirley Z

[msue5]

Thanks Catherine and Shirley

I had my appt with my local Med Onc to find out what the surgeon said and to come up with a treatment plan. The surgeon said he got all he could safely remove but knew that there was some left behind but it was on my aorta. I expected to hear that I would start Ipi. Instead he suggested IL-2. He said this would give me a 15% chance for a durable response. He had already talked to a Dr. Atkins at Georgetown’s Lombardi Cancer Center. He said it is rough and you have to be in tip top physical shape to do this. I am not doing it. I have had 7 surgeries in less than 3 yrs and can feel myself losing more and more of my stamina after each one. I am going to meet with this Dr. Atkins but only because I read a speech he gave at ASCO this year on Ipi and Zelboraf so I think he will be open minded about something other than IL-2. I’m not sure how they would guage my response to IL-2 anyway since I don’t have a large tumor to monitor. My local Onc keeps up on the latest info and seems to know his stuff. I think it is the location that is bothering him. He is retesting the nodes for Braf just in case even though I was neg from my original tumor. He said if I was pos he would start Zelboraf. I am also going to consult with Med Onc and Dr. Venna at Wash Hosp Center to get their opinions. I have an appt with my Rhematologist to see

how all this is going to affect my Lupus. The Med Onc was going to call him yesterday and discuss everything with him. I know when I go tomorrow he will have already researched all of this. He is one of the most intelligent Dr.s I have ever met. Sorry for rambling but this is getting complicated and I am so tired of thinking about it but Yervoy will probably be my choice. Maybe the Onc thinks I don’t have the time to wait for Ipi response. But will anyone know how this will affect my lupus. I have no organ involvement with my Lupus but what if these drugs change that? I am really scared I’m going to make the wrong choice.

Mary Sue

definitely start Zelboraf which made me wonder if he thinks Ipi would have too slow of a response. I am also going to consult with Dr Jang(med Onc) and Dr.

[msue5]

Ignore bottom of post. I must have done something stupid.

Mary Sue

[Shirley Z]

Hi Mary Sue,

So sorry you are going through all of this. I agree with you about not doing the IL2. Its a really tough treatment, I hope they will be able to come up with a safer, less toxic option for you.

How are you feeling? Hoping each day will bring you more strength to fight what is ahead of you.

Love,

Shirley Z

[Gilly]

Hi

I have sadly come over from the stage 3 forum – my husbands PET and biopsies showed at least 2 non resectable mediastinal nodes (matted cluster) and 1 metastase near his hip – we have been offered (pending a positive Braf V600 mutation) a trial GSK combi V – phase 3 randomized zelboraf or debrafenib/trametinib – is anyone else on this ? we are very gutted tonight !

[bettin]

Hi Mary Sue,

I think you’re right to get another opinion- maybe you can get PD-1 somewhere? Without previous treatments and not much tumor mass, you should be a good candidate!! In any case, a Melanoma center would be the best place to be!

Gilly- the combination of BRAF and MEK inhibitor has been shown to work better than BRAF inhibitors alone- ESMO lately was full of that. I personally find the design of this GSK trial extremely disappointing but currently, it seems to be the only way to get the combination so if you could get on that, I cross everything you end up on the combi. The worst you can get is the BRAF inhibitor alone which you could otherwise get as well, so at least they seem to have gotten over the DTIC comparison….

All the best to both of you-

Bettina

[Gilly]

Hi

thanks for that Bettina – the trial we have been offered is the GSK combi V which is either the combination Braf/Mek arm or Zelboraf arm – either way its something reasonable – we are just waiting for the Braf V600 mutation confirmation – the immediate concern is just trying to decide whether to jolt the kids into reality – at the moment they think melanoma is akin to a verruca – which was ok when it was stage 3 but stage 4 brings with it more unpleasant possibilities. Thanks for your time.

[msue5]

Had appt at Georgetown Lombardi Cancer Center. I left more confused than ever

I was going for a possible opinion about IL-2. I was pretty sure I wasn’t going to do it but thought I could learn more about my choices. The Dr. was the 1st one who is really concerned about how immunotherapy might affect my Lupus. He is checking with Radiation Oncologist about SRS to the area even though another oncologist thought the area was too risky. There is a question about how much disease there is. I think they are going to do a chest Ct in about 3 weeks to see what shows up. I wish somebody could come up with a clear plan. I am in limbo land since Sept and am tired of wondering about my future. They are retesting for Braf and also going to test for Nras which might get me into a MEK trial. I am almost ready to get an opinion at one of the big centers but will wait for Chest Ct results and Nras results.

Mary Sue

[Shirley Z]

Hi Mary Sue,

I cannot even imagine what you must be going through. The not knowing is the most difficult part. I sure hope you are able get some answers soon.

I’m praying for you every day for healing and strength.

Shirley Z

[msue5]

I received a call from Georgetown Fri telling me to set up a consult with their Radiation Oncologist so I guess now they are considering this even though Med Onc at Melanoma thought it to be risky. I also ordered copies of my 2 thoracic surgeries because the 1st consultation the Dr. was wishing I had the copies. The more I think about that visit the more I’m realizing I did not like the Dr. He came in the room and returned the discs from my Pet Scan and said these don’t help him because their computer couldn’t read them He then went into this 20 minute monolouge of lots of info and when I tried to ask guestions he said let me finish and then you can ask questions but by the time he finished I had forgotten all but a few. Reading my surgical report at the 2nd one it States one of the nodes ruptured during surgery. They could not mobilize the clump of nodes so had to remove them by cutting into pieces and he couldn’t remove everything due to bleeding risk. I’m tired of all the different opinions and am thinking maybe its time to consult one of the top 3- Sloan Kettering, Moffit or Md Anderson. This Dr made it sound like all the immunotherapies could be dangerous for me while 3 others said all we can do is try but didn’t think it would be a problem. And I’m just sitting here in fear with my life on hold. Can you tell I am getting frustrated?

[Catherine Poole]

You are closeby to Johns Hopkins, why not consult with their group? They have a melanoma specialty group. I would give that a try.

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