Lukian and Keytruda

Posted By
Anonymous
8/7/2017 11:03pm
Activity
Replies: 9

Hi,

 

First post after much knowledge gained from reading brave posts.  God bless all out there.

My wife was diagnosed with stage IV this April.  Needless to describe emotions, pretty much the same as all the posts I read.

 

However, my wife also has follicular lypmphoma and was diagnosed with it two years before.  She was placed on watch and wait until a biophsy of a neucrotic node on her neck dropped the M bomb on us.

 

She successfully did four rounds of yervoy and opdivo.  Mix results.  Due to new mets Dr. recommended clinical trials for which she didn't qualify due to concurrency of lymphoma.  So now want to try Keytruda and Lukian although she benefitted from combo as there was some shrinkage of mets.

 

My concern is that she has the CD10 expression which I understand is not a good thing to have and the SOX10 expression which is likewise bad.

 

She is Braf, Nras and Cart negative also bad because can't resort to trageted therapy.

 

I don't know about the Keytruda / Lukian combo but I'm thinking that some peptide prodrug may be the way to go because of the CD10 expression.

 

Anyone out have any advice on the CD10 or am I getting bogged down of it.

 

Has anyone gone NED on Keytruda after mixed result on ipi/divo.

 

A doctor at MS Anderson recommended Abraxene as second line.

 

Any sight is welcomed and appreciated.

Bubbles - (8/10/2017 - 1:00pm)

I am sorry you and your wife have dealt with so much.  I wonder if you are being recommended Leukine (also called GM-CSF and sargramostim).  It has been given with ipi (Yervoy) in studies and improved the effect.  It is also within the intralesional (a medicine injected directly into tumors) once called Oncovex, now called T-VEC.  Here's a report (with links within) that talks about a lot of that:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/11/sargramostim-aka-gm-csf-or-leukine.html

So...I'm not sure if by what you are saying they are offering to infuse leukine and Keytruda. Or if they are thinking of giving leukine as an intralesional injection.  Here is an ASCO (annual cancer meeting) report on T-VEC combined with Pembro (Brand name = Keytruda):  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/asco-2016-t-vec-talimogene.html  

I'll attach an ASCO 2017 post below (folks can sell passports on MPIP, but I can't post more than 2 links in one post!).

Bubbles - (8/10/2017 - 1:26pm)

Read down in this post and you will find the updated, 2017 data, on t-VEC with pembro:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=t-vec&max-results=20&by-date=true  

As far as CD10 and melanoma...one report notes:  "CD10 may promote tumor progression by regulating the expression profiles of genes related to cell proliferation, angiogenesis, and resistance to apoptosis."

Meaning it does all it can to protect the melanoma cells from death and destruction which is NOT at all what we want!  However, I have not seen a particularly promising report on a specific treatment in that regard...doesn't mean that there isn't one...just saying I haven't seen it.  

Melanoma doesn't make things easy.  Don't know if all this helps you much...but I wish you and your wife my best.  Celeste

 

Anonymous - (8/10/2017 - 9:02pm)

PS she also has clear cell features but I'm not sure what that means. Her previous doctor that was treating her lymphoma stressed that I should point that out to the new doctor that would treat the melanoma and I did but he didn't seem to give it great importance. Any thoughts?

Jess58 - (8/10/2017 - 8:56pm)

Hi thank you for your kindness in responding so quickly. For a month or so now I have been reading your posts with wonderful information and inspiration for anyone seeking help on this site.

Please forgive me as I am getting my feet wet in this process and sorry that I'm posting as anonymous. I am on the site as Jess58.

Yes I meant leukine.

The doctor said she'd be receiving injections at home and the keytruda will be infused at the hospital facilities. Still don't know how the injections will be given on her body. I guess the doctor will explain that on the 15th. My wife hopes that they don't expect me to inject her although I'm willing and capable but she's concerned with the situs of the injection and is not thrilled with me having to inject her visible tumors. She's also concerned with the pain that would be involved with an injection at the tumor site but I tell her if that's what it takes then that's what it takes.

Do you know if they use topical anesthetics or do they do it cold turkey? This is all so new and I feel like we're playing catch-up.

I don't know if a nurse comes to the house and injects her. I don't have a clue all I know is that the doctor said daily injections at home.

Yes I read the same article about the CD 10 expression and how it fights to keep the melanoma alive and progressing. I also read that researches indicate that that expression should serve as a Target and that perhaps a cleavable peptide prodrug is the way to go with those expressions. One such drug I believe it's called doxorubicin.

She has follicular lymphoma too and I know that they use rituxan which is a prodrug but her doctor told us that that targets the cd20 expression which she does not have.

Hopefully this new combination will be a success but like to have a plan C&D in the works.

Another doctor indicated a good second line would be a abraxene which is a nab-paclitaxel chemo drug.

Let me just say this is one scary disease.

Her lymph nodes swell up then they go down. She has pain roving all over her back, on her neck under her arm and even in her groin. It just jumps around all the time and in no one fixed place.

She also had nausea which has gotten much better now, fevers which I've gotten better now ,chills which I've gotten better, and night sweats better now, and bloating. Some vomiting. But no diarrhea thank God. No skin rashes either.

We stay positive and have great faith that God will help our family.

I am so glad I found this site as it is so helpful and full of support and those that contribute do a wonderful thing to help others in need. To all those out there fight on.

I am trying to digestion comprehend the wonderful information that you supplied to me and again thank you for it.

Any information on the peptide prodrug and cd10 expression would be appreciated as well as any information on how addressing her follicular lymphoma,b cell might help with the melanoma.

Jess58

Bubbles - (8/11/2017 - 1:05pm)

Hey Jess, 

I'm sure the folks at the hospital will give you a better explanation of the plan for the leukine injections on your next visit. If they don't volunteer more info...demand it!!!  However, I would doubt they would do intralesional injections at home.  (Although I would ask about her getting them at MD because combined with immunotherapy intralesionals show a lot of promise!!!)  Anyhow, you can give leukine as a sub-q injection (into subcutaneous tissue), much like the way insulin is given for diabetics...so if you were to do it at home...I imagine that would be the technique.  (Which they should fully teach you, if you are the one who is to be administering the drug.)

As far as treatment specific to the CD 10 issue....I don't know of any at this time.  While I think it is super important to have all the testing done of our tumors as we can...for immediate treatment options and for education/future development of treatment puposes...sometimes it ends up presenting more disheartening and worrisome information.  I will certainly post any info I come across in that regard.

Additionally, though I have done some research for someone with lymphoma...including on rituximab, etc...I really don't know what to tell you about it in regard to melanoma.  Sorry.  Wish I could help more.

Hang in there.  Celeste

Anonymous - (8/11/2017 - 11:25pm)

Hi Celeste,

Thanks for all the information most kind of you.

Got a call from my wife's doctor today and he said that the MRI showEd new metastasis to two vertebraes. So now he's talking about radiation to ease the pain and he's also talking in about adding some chemo. Perhaps a nab-paclitaxel. He also may keep the leukine in there but he's waiting on insurance approvals for that. I spoke to him about bringing in a follicular lymphoma consultant and he said he had no problems with doing that.

So we will be Consulting with the head doctor that's handling the melanoma treatment and then another physician for the radiation and then another for the follicular lymphoma and mixing and all sorts of drugs, keytruda, leukine, nab-paclitaxel and radiation.

I know that they say that you have to be very aggressive with concurrent diseases but this is a lot.

We are hanging tough. And positive. We believe you never know when it's tweaked right and good things start happening.

Jess

Anonymous - (8/11/2017 - 11:29pm)

Hi Celeste,

Thanks for all the information most kind of you.

Got a call from my wife's doctor today and he said that the MRI showEd new metastasis to two vertebraes. So now he's talking about radiation to ease the pain and he's also talking in about adding some chemo. Perhaps a nab-paclitaxel. He also may keep the leukine in there but he's waiting on insurance approvals for that. I spoke to him about bringing in a follicular lymphoma consultant and he said he had no problems with doing that.

So we will be Consulting with the head doctor that's handling the melanoma treatment and then another physician for the radiation and then another for the follicular lymphoma and mixing and all sorts of drugs, keytruda, leukine, nab-paclitaxel and radiation.

I know that they say that you have to be very aggressive with concurrent diseases but this is a lot.

We are hanging tough. And positive. We believe you never know when it's tweaked right and good things start happening.

Jess

Anonymous - (8/11/2017 - 11:34pm)

PS sorry for the double post don't know why that's happening. By the way the doctor said it would be subcutaneous injections and not into the tumor as he does not believe that it's necessary to go directly in because it's systematic. But I would have preferred it go into the tumor.

Jess

Jess58 - (8/10/2017 - 8:59pm)

Hi thank you for your kindness in responding so quickly. For a month or so now I have been reading your posts with wonderful information and inspiration for anyone seeking help on this site.

Please forgive me as I am getting my feet wet in this process and sorry that I'm posting as anonymous. I am on the site as Jess58.

Yes I meant leukine.

The doctor said she'd be receiving injections at home and the keytruda will be infused at the hospital facilities. Still don't know how the injections will be given on her body. I guess the doctor will explain that on the 15th. My wife hopes that they don't expect me to inject her although I'm willing and capable but she's concerned with the situs of the injection and is not thrilled with me having to inject her visible tumors. She's also concerned with the pain that would be involved with an injection at the tumor site but I tell her if that's what it takes then that's what it takes.

Do you know if they use topical anesthetics or do they do it cold turkey? This is all so new and I feel like we're playing catch-up.

I don't know if a nurse comes to the house and injects her. I don't have a clue all I know is that the doctor said daily injections at home.

Yes I read the same article about the CD 10 expression and how it fights to keep the melanoma alive and progressing. I also read that researches indicate that that expression should serve as a Target and that perhaps a cleavable peptide prodrug is the way to go with those expressions. One such drug I believe it's called doxorubicin.

She has follicular lymphoma too and I know that they use rituxan which is a prodrug but her doctor told us that that targets the cd20 expression which she does not have.

Hopefully this new combination will be a success but like to have a plan C&D in the works.

Another doctor indicated a good second line would be a abraxene which is a nab-paclitaxel chemo drug.

Let me just say this is one scary disease.

Her lymph nodes swell up then they go down. She has pain roving all over her back, on her neck under her arm and even in her groin. It just jumps around all the time and in no one fixed place.

She also had nausea which has gotten much better now, fevers which I've gotten better now ,chills which I've gotten better, and night sweats better now, and bloating. Some vomiting. But no diarrhea thank God. No skin rashes either.

We stay positive and have great faith that God will help our family.

I am so glad I found this site as it is so helpful and full of support and those that contribute do a wonderful thing to help others in need. To all those out there fight on.

I am trying to digestion comprehend the wonderful information that you supplied to me and again thank you for it.

Any information on the peptide prodrug and cd10 expression would be appreciated as well as any information on how addressing her follicular lymphoma,b cell might help with the melanoma.

Jess58