› Forums › General Melanoma Community › Primary tumor wont go away but 19 others are gone?1
- This topic has 4 replies, 2 voices, and was last updated 9 years ago by
Mikalias.
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- March 6, 2017 at 4:02 pm
I was diagnosed with a rar form of melanoma on my right ear lobe stage 2. It was biopsed and removed and just below it they took out 3 centenal lympth nodes but 6 months later a stage 4 tumor apeared right below where my ear lobe used to be that ws atatched to my parotid gland. The Oncologist told me I had 5 months to live with chemo but I told him I was having extreme pain becuase the tumor was pushing against my arotid gland so he sent me to have radiation treatment and that solved the pain problem but it did not get rid of the tumor. When I came back after the radiation treatment (month later) the oncologist told me that Kiaser had approved of a new treatment called immunothearapy and promptly put me on Yervoy and after 4 treatment all the tumors (11 in my liver, 7 in my lungs, and one inside my bone on my right shoulder) were reduced to inactive lesions or what he called photopenic which I think means totally gone. My primary was still there and the question I have is, does radionion treatment on the primary caused it to be immune to the Yervoy treatment? After two years i'm now back on immunotherapy becuase there is 3 leasion on the liver that are starting to light up on the combined pet/ct scan and he is now giving me Keytrudia. after 3 treatment the 3 tumors are getting smaller but the primary on my neck is still the same size and I have a possible new tumor under my right jaw on the neck so it looks like the Keytrudia wont work on tumors that are received radiation treatment and the mets from that tumor are possibly immune also.
Any comments?
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- March 6, 2017 at 9:14 pm
Your primary tumor was the melanoma you had removed from your ear, all other tumors are considered metastases from that tumor. Radiation certainly does not make a tumor immune. Nowadays we know that the combination of using radiation and immunotherapy can get very good response rates. If you were to receive radiation again, not sure if that's a possiblity, while you are on Keytruda, that could get that tumor to start going away. Having a melanoma oncologist is really important in getting the right advice and treament.. general oncologists just don't understand this disease since it's treated so differently from other cancers. There are those of us who have had multiple mets and gone on treatment to have all of them except one or two go away. Some tumors just want to be stubborn, and we don't really understand why. Sometimes, if surgery is an option, then that's the way to go. Because this is a bit tricky, I highly suggest seeing a melanoma specialist if you're not already.
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- March 6, 2017 at 11:47 pm
Thank you for the correction regarding the primary tumor as I always thought it was the one on my neck right below the right earlobe where the primary was. Even through it isn't going away I have noticed that it is turning dark grey and then later changed to a redish color. I was sent to a plastic surgeon to remove the primary on my earlobe, later I come to think that they should have sent me to an ENT to do the surgery as ive always been a little suppiciios of the fact that it metastazised directly below where he made the incision to remove my lymph nodes. If blood from the earlobe spilled down into the in incision and onto the exposed Parotid gland could that cause the stage IV tumor to grow there? Also I have a great oncologist as he is chief of staff of all the oncologist that work there.
Mik
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- March 7, 2017 at 12:14 am
The spread really wouldn't work like that, so I don't think the reason a tumor grew there was due to anything the surgeon did. Just have to say, before I knew about melanoma specialists, I had an oncologist who was the head of oncology at the hospital I was at when diagnosed. Then, I found a melanoma oncologist at a research hopsital. The difference in knowledge about melanoma was mind blowing. Just because an oncologist is a cheif, doesn't mean they know about melanoma the way a melanoma oncologist/researcher does. It really does make a difference in our care, but of course as long as you have trust in your care then that's what matters. When you get a PET scan, does this tumor light up, does it show an FDG uptake number on your scan report? Sometimes tumors can remain but be dead, as in no more activity occurring.
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- March 7, 2017 at 5:21 am
Yes I have two masses on my liver that have come back to life but the keytrudia is working and they are about half the size after 3 treatments. I had 11 tumors on my liver some of them are completely gone, I think they refer that as photopenic. I normally get a combined pet/ct scan every quarter but I had a colonoscopy and they found a 3cm polyp with cancer in it and took it out, so they did a cat scan and the report show the 3 masses on my liver shinking but they could not give Glucose uptake becuase the cat scan doesn measure it. I'll have another pet/ct in next 3 month then i'll be able to see the how active they are. They replaced the Pet/CT scan machine the last two times I had scans and it is a new machine that does a complete body scan as it is much longer and the technician says it is 5 times more sensitive then the old one. I see more information on the reports then before.
Mik
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