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June 17, 2014 at 1:32 am #22034
In May, my 44 y.o. husband went from 3c to 4 after a PET showed lesion new stomach (3.5 cm) end of April 2014.
july 2010 melanocytic nevi Lower left calf excised (later in 2914 reread by mskcc as melanoma in situ)
derm exams/6 mos
June 2013 small nodules by excision (we had no idea we should be looking for anything like this and thought it was a vericose vein)
July 2013 bump in groin. Biopsy shows it’s melanoma.
Mid August 2013 lymphadenectomy (5/19 positive) and excision of lower leg nodules.
oct 2013 start yervoy and gets all 4 cycles. Colon issues require heavy prednisone and 2 remicades.
radiation of lymph basin nov/dec
january 2014 tumor profile NRAS pos BRAF neg
march 2013 finally tapering of prednisone
April 2014 pet shows lesion in stomach (3.5 cm) and little nodule in groin and at lower left calf.
may 21 start anti pd1 and KIR trial.
Yesterday shortness of breath, severe fatigue land us in ER
CT show stomach now 6cm, probably oozing. And possible left lung nodule. Labs show iron deficiency anemia, low hbg and low hct. This is probably causing fatigue and shortness of breath.
Today started Iron and we meet with research doc weds.
so, what do you think he will say? Give the anti-pd1 a little more time? Get on mek inhibitor? Just so worried right now. We have a 6 y.o. Boy and 8 y.o. Girl. We thought we would get to fight for a bit but now we feel pretty low.
help. Thoughts. Suggestions welcomed.June 17, 2014 at 11:12 am #64681
So sorry to hear all that both of you have gone through. You sound like an amazing caregiver. One thought I had was your husband could try the other PD1 agent that is in Expanded Access. Are you going to Sloan for the trial? Mek is a possibility too. What does the doctor suggest? I do think it appears the current PD1 is not getting a good response.June 17, 2014 at 11:42 am #64682 Hi Catherine,
We are getting present treatment at MSKCC. I will bring up your suggestions tomorrow. Since the stomach tumor is bleeding do they need to remove it? There are two small lesions on leg they can use to assess effectiveness of therapy. I am an Oncology Genetic Counselor. I know enough to be dangerous but feel overwhelmed by the “best” next step. Thanks so much for replying. I will post after our visit tomorrow.July 10, 2014 at 6:16 am #64683dhrahnParticipant
I’m curious to what happened with your husband and the PD1?? June 23rd the same thing happened to my husband and he was hospitalized for a week. He had only 2 PD1 infusions but progressed more than he ever had so they took him off. We just started Zelborah + Mek. He was on Zelboraf 18 months ago so hopefully his body will respond again plus adding the men.July 11, 2014 at 9:46 pm #64684
Update: my husband is getting intermittent blood transfusion to deal with the blood loss from oozing stomach tumor. We did get the 4th dose on Anti-PD1/KIR July 2nd but then things got bad.
The bleeding was becoming an issue and we were set to have it surgically removed yesterday. However, CT showed stomach tumor is at 8cm and new lesions throughout liver. Surgery cancelled and they started him on Cisplatin/Vinblastine/Temodar weds night. Still in hospital. Getting third day of VCT today. Hopefully, we get another VCT in 3 weeks and scans 3 weeks after that.
Obviously, off the pd1/KIR trial and hoping VCT works some magic…will reassess in 6 weeks. Back on the melanocoaster.July 15, 2014 at 6:53 pm #64685kylezParticipant
Sorry about your husband’s progression. You are both fighters. i’m rooting for him. How is he doing this week?
-KyleJuly 16, 2014 at 4:07 am #64686
Thx for reaching out. My husband actually had his stomach tumor removed today (it was bleeding/oozing too much). He did get one cycle of the cvt in over weekend. I imagine they will let him heal up and give another dose of cvt or maybe the expanded access for pd1. They said the tumor was the size of 1/2 of a tennis ball hanging into stomach from a stalk. Glad it’s out for sure.July 18, 2014 at 8:58 am #64687PieterParticipant Hi,
In my case it didn’t seem to work. I had 8 infusions every 3 weeks, but the tumours kept growing and new ones appeared. Now I am waiting for the next step. Depending on the outcome of the last scan I will decide with my oncologist the next steps. Surgery with IPI may be possible or maybe TIL?
PieterJuly 21, 2014 at 1:03 pm #64688ChinixParticipant
How is your husband feeling this week? I hope he is recovering from the surgery. My father also had a surgery to remove melanoma in his stomach. They removed 80% of his stomach. It was in March and now he has pretty much recovered from the surgery. The issue remains the anaemia.
Anyway, I just wanted to remind you that you’re not alone. Besides, I’m also a Genetic counsellor and I do some cancer clinics and I know how it feels to be in the field and have some scientific knowledge and still (of course) feel overwhelmed about what is happening.
all my best wishes.
VivianeJuly 23, 2014 at 2:59 am #64689
Thx for your reply Viviane. Another GC. I love it. Pieter I am sorry the pd1 treatment didn’t work. Sometimes people are late responders. In the mean time, I hope they get you something to take care of the growing tumors. Viviane. My husband ended up losing 20% of his stomach. He is still in hospital recovering…found out he has some clots in his right leg. I think the plan is to give him another dose of cisplatin/Vinblastine/temodar. Then see if that took care of the liver lesions. If so, revisit pd1 via expanded access. He is NRAS positive /BRAF neg. this melanoma roller coaster is exhausting but we stay hopeful. Viviane when was your Dad diagnosed? Was the stomach tumor his only lesion? I wish good outcomes for everyone.July 23, 2014 at 11:56 am #64690 Hopefully, one day soon we will have some biomarkers to predict who will respond to the PD1. We also will know what combination of drugs works best, I hope soon. There is much work and research to be done and that only shows us the importance of participating in clinical trials!
Fayfighters: I wondered where your husband was being treated, is that Sloan Kettering? And he is getting a combination of chemotherapies? I hope he recovers and heals quickly. If you read Jonathan’s posts, he, too, has been through the stomach/intestinal surgery. Don’t forget to take care of yourself!July 24, 2014 at 4:28 am #64691
We are at MSKCC. I know it’s the best place for him but it can be tough as we live on the Jersey shore. We have a 6 and 8 year old that I need to care for. Hopefully, he will be discharged soon and we can do the chemo closer to home. Thankfully, the stomach tumor was more “pedunculated” and attached by a stalk of sorts so the 8cm size tumor (described by a surgeon as looking like 1/2 a tennis ball) had grown into the stomach cavity. We are hoping the chemo cocktail will clear the liver mets. I have been following Jonathan’s thread as well. I can’t imagine the pain that melanoma patients endure. And Mike definitely does better when he is pain free. I also brought the kids up Sunday for a visit and that helped lift his spirits.July 24, 2014 at 12:35 pm #64692
Yes, and he shouldn’t be in pain! There are epidurals and lots of pain meds out there and pain needs to be nipped in the bud. My heart goes out to you traveling for care and little ones at home. I hope you have a good support system helping you through this.
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