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Viewing 15 posts - 1 through 15 (of 21 total)
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  • in reply to: More research #66248
    Linda G
    Participant

    Hello again. I am sad to say that my sweet husband Vince left us in February and is resting peacefully in the arms of our Lord now. His last days were peaceful and without regrets. Our hospice team at Bayada in Boyertown was God’s gift to us during his last days. We were truly blessed to have Rachael and Rebecca as part of that team. They made special arrangements with our pastor to have a special pre- wedding ceremony for my 21 year old daughter and her fianc√© to share with my husband and he was able to ” give her away” at this time, complete with veil, wedding cake, sand ceremony and photographer. What was most amazing is that although my husband could not speak, he was fully aware of every precious moment and at the very moment the pastor asked who gives myvdaughtwr’s hand in marriage, my husband reached his hand out and took hold of my daughters hand and squeezed it tightly and the photographer captured this precious moment on film. My daughter’s face is glowing at that very moment as was my husband’s. He never looked better! A memory she will cherish forever and his dream fulfilled before he left us! He passed peacefully the next day! God’s grace is truly amazing. Thank you all for the support we have received from you and your kind words. Our hearts are broken but our year was full of wonderful memories and no regrets. Thank you all.

    in reply to: Ipi and pd1 failed. What now??? #65584
    Linda G
    Participant

    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!

    in reply to: Ipi and pd1 failed. What now??? #65581
    Linda G
    Participant

    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 post

    in reply to: Ipi and pd1 failed. What now??? #65580
    Linda G
    Participant
    in reply to: Ipi and pd1 failed. What now??? #65579
    Linda G
    Participant

    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 viagra

    http://www.cell.com/cancer-cell/abstract/S1535-6108(10)00431-9#/cancer-cell/fulltext/S1535-6108(10)00431-9?mobileUi=1

    in reply to: Ipi and pd1 failed. What now??? #65578
    Linda G
    Participant

    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!

    in reply to: Stage IV Mucosal Melanoma- Lost and Overwhelmed #63927
    Linda G
    Participant

    Thank you Ann. After doing a little research and meeting a young lady today that is going through the same radiation treatments and having difficulty eating and swallowing. We are starting to see the benefits of getting this prophylactic ally. We will be talking to the doctor today tonget more information about this. This disease surely knows how to throw a curveball at any moment and doesn’t give you time to breath.

    in reply to: Stage IV Mucosal Melanoma- Lost and Overwhelmed #63925
    Linda G
    Participant

    Thank you Jeff for the words of encouragement. My husband and I have already discussed the chemo issue and we both agreed that this would not be an option. I am not familiar wi ADC but will research it along with the other information you provided. Today his doctor made mention of a Peg stomach feeding tube which totally caught us off guard. They said that as the radiation progresses it may become more difficult for him to maintain his weight and stay hydrated. This was the first time this was mentioned to us. Do you know anything about this and/ or did your wife experience mucositis during her treatments?

    in reply to: Stage IV Mucosal Melanoma- Lost and Overwhelmed #63924
    Linda G
    Participant

    Thank you Catherine for the reply and encouragement. I do live in the Philadelphia region and will call you on Tuesday March 25 if that works for you Catherine. I do gave some questions that I would like to run by you. Thank you

    Linda G
    Participant

    Hi Catherine

    Yes it is Malignant mucosal melanoma of the maxillary sinus with metastases to the T6 spine area.

    Linda G
    Participant

    Hello Catherine. My question for you with regard to the MK3475. My husbands original BRAF mutation for V600 came back negative however another genetic study revealed a mutation in a different area on the BRAF gene called BRAF L597Q (sub clonal). Does that mean he would have to try a BRAF or MEK inhibitor prior to being eligible for the Merck EAP and if so are they FDA approved or clinical trials. He is receiving IMRT and arc radiation now on face and sinus and is scheduled for 2nd Yervoy infusion on April 2. Also is this something you wait for or start registering for in advance in case the Yervoy doesn’t work Thank you.

    in reply to: Next steps now for stage IV #63085
    Linda G
    Participant

    What exactly is an ADC drug. I am not familiar with this. I am also confused as to why he would have to wait for Yervoy to fail before he could get the anti PD 1 drug. I thought the promise in the treatment results was with the Yervoy in Conjunction with PD1. My husband starts radiation on his sinus and face on Monday for 4 weeks, 5 days each week since they were not able to remove all if the tumor. I have no idea what to expect with this. Can anyone offer any insight?

    in reply to: Anti PD1 infomation -MK-3475 #63824
    Linda G
    Participant

    I think they are. That is how it was referred to me originally as compassionate care

    in reply to: is it yervoy pseudo progression? #63825
    Linda G
    Participant

    Please see my Merck 3475 post. They were just approved for a compassionate care program on Monday March 10, . I posted the info. I hope this helps and am praying for you and your family.

    in reply to: Next steps now for stage IV #63083
    Linda G
    Participant

    Hello linda mg

    See my post about the Merck mk-3475 drug. I may be confused but I thought it was Anti PD 1. I am new at this and still overwhelmed. They just opened up a compassionate care program giving access to the drug through their expanded Access Program which just started on Monday March 10. Hope this helps

Viewing 15 posts - 1 through 15 (of 21 total)