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April 20, 2013 at 1:36 am #21204
my husband has been battling with mucosal melanoma for 5 years now.
he has had 2 surgeries, chemo, and IV IL. Now he has a mass in the liver, suspecious for melanoma. I am doing research about clinical trial in our Area. Just wanted to share with someone not family related.April 20, 2013 at 5:27 pm #60169
Welcome to our forum. Have you looked at http://www.clinicaltrials.gov? There are some interesting trials that may benefit your husband. I’m sorry to hear about all you are going through. Please let us know how we can support youi.April 30, 2013 at 9:42 pm #60170 Thank you Catherine, it is a relief to have this forum, and I can comunicate with people that have experience this disease. my husband was diagnosed first time in march 2008 with mucosal melanoma.
melanoma was in the anal area, surgery was the first line of treatment. sept 2009, melanoma returned to his inguinal area. after this he had chemo, and immunotherapy. now the pet/ct shows melanoma in the leg, tip of pancreas, kidney, lung, lymph nodes near the esophagus and metasis to the liver. We are going back to The Los Angeles clinic in Santa Monica, hopefully he qualifies for IPI. (once insurance approves that).
Gracias!May 3, 2013 at 5:49 pm #60171
Ask about the clinical trials at the Angeles clinic, also UCLA. You might find something more interesting for therapy..let us know.May 9, 2013 at 12:10 am #60172 Saw the specialist in melanoma, we receive all the info regarding the clinical trial; to take home, read and consent for clinical trial MK-3475. I hope this will help him. last two days he was having pain, generalized and also by the liver area. it was difficult to see him like. today he feels better. meanwhile the braf mutation is being processed from the tumor removed in 2009.
frannyMay 9, 2013 at 11:20 am #60173
I hope he gets a good response. Do make sure pain is under control for him, because that can wear him out. Don’t forget to take good care of yourself too!!May 14, 2013 at 11:32 pm #60174 Today my husband had MRI for the brain, repeated ct scans, and biopsy of an abominal mass. seems that we are getting closer for him to start the clinical trial.. I wish he could start soon.
next appt 5/23, looks like he will start the infusion. It is difficult to wait and see him in pain.
we are almost there, and I am thankful for that.
frannyMay 15, 2013 at 2:19 am #60175AnonymousGuest
I’m praying that your husband gets in and has a great response Franny.
Watching your spouse suffer is really hard though.
Rest assured you’re doing a truly great job caring for him.
Take care of yourself too. Easy to say as it’s also a real difficult job at times but it is very, very true. It’s ok to put your oxygen mask on first. It gives you strength to help him.
JeffMay 19, 2013 at 6:32 am #60176
Good news, my husband will star the trial this Monday! I was reading your. Comments about radiation working for mucosal melanoma. His brak mutation is – the wild type, mucosal melanona.
The pet scan showed growths 4 cm liver, lung, tip f pancreas, kidney, left leg, and lymph nodes.
Thanks for your prayers.
Franny.June 27, 2013 at 11:47 am #60177GillyParticipant
Just wondering how you are doing Franny – and how your husband is doing on the trial – I hope you are both ok.July 30, 2013 at 3:24 am #60178 Hi Jeff, and Gilly:
Things have been though here at home. my husband has now brain mets, and is disqualified for MK-3475. Scans shows new lesions liver, lung, lymph nodes, so many more places.
He is very fatigued, poor appetite, pain. I am sorry for all the patients and family that go through this melanoma cancer. Gamma knife is being schedule, maybe some radiation to the liver for pain control. It seems that he is getting weaker and weaker and very difficult to go through BIO Chemo if it ever happens. I am sad, I wonders if tears have a limit? I wonder why melanoma is so nasty?
We have 5 children (adults) they have been coming home and it has been a lot of support.
I am on family leave and that also helps. A hug to all!
frannyJuly 30, 2013 at 7:40 pm #60179
Oh, no, so sorry to hear this. I hope you weren’t considering biochemo for him. That would be so toxic and has very low results. There may be other therapies to try that are less debilitating. But first get through the brain mets treatment. Our thoughts are with you.July 31, 2013 at 4:05 am #60180 Hi Catherine,
Gamma knife is schedule for tomorrow July 31.
We saw Dr. Michael Wong today; He recommends brain first, then liver.
to try IPI, and there is a clinical trial for patients who livers are debilitated.
thanks for letting me know about the bio chemo being so toxic.
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