- This topic is empty.
October 9, 2014 at 4:40 am #22200
Hello again. My husband Vince was diagnosed with advanced stage IV malignant mucosal melanoma in Feb 2014. I have posted on this forum before and have been looking lately but not seeing any new info and don’t know where to go from here. Both Yervoy and now Keytruda is failing him. His cancer is now in his liver, lungs, kidneys as well as his spine. He just had his PD1 treatment this week and the doctors are now talking about Abraxene or other types of chemo. He is BRAF , CKit and NRAS Negative. Not sure where to go from here. I thought chemo was not effective with this type of cancer. To date he has been feeling amazingly well and no symptoms but his scans keep coming back worse each time. The thought if subjecting him to chemo that is not effective just doesn’t seem right, especially since he is still feeling and looking good. Any suggestions would be welcome. Don’t know where tongi from here. Didn’t think we were going to need a plan C!October 9, 2014 at 12:04 pm #65575Catherine PooleKeymaster Hi Linda,
I agree with you, if your husband is feeling good, why subject him to something that will affect his quality of life? Abraxane is not proven effective for melanoma, it is used for breast cancer mostly. I guess I would start looking at clinicaltrials.gov and maybe to centers doing a lot of research. Sarah Cannon does nothing but research and you might reach out to them. They are in Nashville. Otherwise, I will do a search too and see if there is anything interesting out there for his situation. He’s lucky to have you and I hope you are taking good care of yourself too.October 9, 2014 at 1:27 pm #65576AnonymousGuest
One thing I remember some of the earlier researches saying was they started asking how the patient felt. Normally in oncology, they stopped asking the patients that because they usually felt like hell because of the chemo.
With immunotherapy it’s a bit different. I remember quite clearly when we were trying to get Rachel into the IPI/PD1 combo trial at MSK, the doctor saying that if there was evidence of disease progression, but she felt good, she could stay on the trial. Their reasonning, at the time, was the “evidence of progression” may, in fact, be the killer T cells invading the tumor, swelling its size (like the infamous IPI inflamation).
So you may want to proceed carefully here but it’s also a tough choice. Is it really disease progression or is the stuff really working and it’s the tumors swelling due to an immune response. Waiting runs the risk of further progression but not waiting may interrupt an immune systen response.
One way to guage what’s going on would be, if possible, to take tumor samples and see. Or continue a bit and wait. A tough choice (Also, is he in pain from the bone mets? You may want to just go ahead and zap those with radiation).
Maybe our scientific board can chime in on the latest thinking and some general guidance.
JeffOctober 9, 2014 at 4:08 pm #65577MathewRParticipant
Linda, if I remember correctly (possibly not), you are in Philly and at Jefferson. Have you considered consulting with Dr. Schuchter at UPenn or Dr. Wolchok at MSK?October 10, 2014 at 2:11 am #65578 Thank you Catherine. I appreciate your help. Jeff, the doctor did say the activity seen on the PET scan may be exactly what you described , that is why he got the 5th infusion. He is scheduled in 3 weeks for a repeat MRI of the abdominal area to hopefully get a little more clarity on just what is going on there. But my thoughts were exactly the same, if he is feeling good why not stay on the treatment a little longer. His quality of life is good right now. He is not in any pain from the bone mets. And Matt, we had seen Dr Schuchter back in March and she did concur with his treatment plan at that time. She did tell us that if things changed or the treatment was not working to get back in touch with her which I am planning to do once we know the MRI results. I may still call her sooner just to see what her thoughts are with regard to this and I have not been in touch with MSK at all. I do appreciate all the input and help. Through all of this , with the exception of the radiation to his face, he has felt amazingly well. We were able to enjoy a wonderful summer, celebrated our 30th wedding anniversary, our daughter’s 21st birthday, and our dream vacation to Hawaii. I find it hard to see him doing so well yet his PET scan says otherwise. Hopefully the MRI will give a better picture and hopefully it is an immune response. If note, his LDH has also been good too! We have a lot of people praying for us. Also, my new email address is lkvgmg@ aol.com in case you email me Catherine. My old account was closed. Thanks again for all you help!October 10, 2014 at 2:28 am #65579 One other thing of concern to us has been the Viagra studies. He has been taking this since at least 2004 and as recently as 2 weeks ago. He has no family history of melanoma and his melanoma was not cutaneous but rather an aggressive and invasive one. My biggest concern though is whether this can hinder the effects of the PD 1 drug. I pasted an article below that I read and although I don’t understand a lot of it, this made me wonder if this drug causes stimulation of melanoma cell invasion and if so would its use be contraindicated with the PD1 drug or cause it to be in effective. I asked his current doctor and she said basically that at this time they weren’t changing their recommendations in their practice regarding stopping it. I also asked a friend who is a dermatologist who is a friend and she contacted Dr Schuchter regarding this and she also concurred. But I am wondering if either of them read the article below! Maybe your scientific board would have some info on this this study was done in 2010, before the Jama study this year on the increased risk of melanoma and viagraOctober 10, 2014 at 2:32 am #65580October 10, 2014 at 2:33 am #65581 Sorry, the whole link needs to be copy and pasted in order to see article. Not sure why I am unable to copy and paste whole link on this postOctober 12, 2014 at 8:51 am #65582lak1Participant If it makes you feel any better I have ocular melanoma a feature of this different to skin melanoma is that it is able to to turn the killing T cells into regulator Tcells which then protect the cancer from the immune system. This also happens in head and neck cancer. Mucosal melanoma is not the same as skin melanoma but I do not know whether it has the same immune escape mechanism as mine. I take Tadalafil ( I am female) because it prevents this down regulation of Tcells. So we probably do not know the out come of the viagra Tadalafil and melanoma story. I guess in your case it is about quality of life – in mine i have taken a risk jumped on the back of a horse and now i need to ride it till we know.
This is a clip about the research
a second article about the theoryOctober 15, 2014 at 4:24 pm #65583artievParticipant
Hi Linda. I’m currently wondering the same thing. I’m on pd1 and will know in 3 weeks for the 2nd scan of it how it’s doing but one of my doc’s has already started talking about that chemo abraxane stuff which like someone on here said has not been proven affective for melanoma.
Instead I’m thinking about the TIL (Tumor Infilitrating Lymphocytes) treatment. Maybe in your research you might want to check into it and see what you think. I believe it is available at MDA, Moffit and NIH.
Best of luck to you.
ArtieOctober 19, 2014 at 1:13 am #65584
Thank you Artie. I will look into it. My husband has decided not to do any chemotherapy treatments he doesn’t want to put my daughter through the trauma of that and wants quality time with us now. His latest PET scan and CAT scan showed progression of his cancer now throughout his lungs, liver kidneys and spine and regrowth in the sinus area too. We had a lot of hope in the PD1 drug but we also knew that mucosal melanoma is a different beast. My daughter is getting engaged shortly and he wants to be there for that special moment in her life while he is feeling good. We have a palliative care (hospice) meeting on Monday to talk about many things now. On checking the clinical trials, I didn’t see anything that he would qualify for but will definitely look into what you suggested. Keep us in your prayers!
- The forum ‘Melanoma Diagnosis: Stage IV’ is closed to new topics and replies.