› Forums › General Melanoma Community › Help with next step
- This topic has 6 replies, 2 voices, and was last updated 9 years, 11 months ago by
flvermonter.
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- June 5, 2014 at 1:50 pm
Hello, I need to update the profile once i find it again, but would like some help in next direction. My husband had BOTH lung cancer (right lung) and melanoma on the right side. He had all the lymph nodes removed and was advised it had passed beyond; however, no other site found in May 2012. His petscans were good through Jan 2014. By the way had open heart surgery for aortic valve replacement Dec 2012.
He balance became quite off and worsened over time. Petscan was good, MD checked and ok, ifnally went to a Nerology Dr who ordered and MRI this was end of March 2014. 3 metastic tumors showed on the brain. This was followed by WBRT that completed 3 weeks ago. His balance was somewhat better for awhile, but is slowly worsening. Additionally, his righ hip or top of his right light has sharp pain when he stands. He has also been on prednisone since 3/22/14 for the swelling on the brain.
He had a petscan last week, it showed no other tumors in his body, albeit, a suspicious spot on his top of right femur. That is getting a catscan today. The petscan showed the 3 tumors that the March 2014 showed. The Radiation Onc said it may be just the swelling from the radiation and that may be unusual for radiation not to kill the turmors. He added that melanoma is unpredicable. So we are waiting to see if his balance improves and checking the leg.
Here is the MRI info from 3/20/14:
asymmetric areas of vasogenic edema involving the right posterior parietal lobe and left frontal lobe as well as the cerebellum on the right side. A discrete 18-mm mass in the right posterior parietal region and a larger 2-cm mass within the cerebellum on the right side. A distinct lesion within the left frontal lobe is not appreciated; however, given the asymmetric white mater changes, it is highly suspected that a third lesion in this location is present.
Here is the PETscan from 5/30/14:
Hypermetabolic 29mm right cerebellar metastasis with SUV of 8.5. There is circumjacent vasogenic edema with mass effect and effacemetn of djacent margin of fourth ventride. No hydorcephalus. A second 20 mm intensely hypermetablock metastasis with SUV of 11.2 in superior right parietal lobe involving precuneus. Circumjacent basogenic edema with compression of overlying parietal cortical suici.
He has not seen a medical onc, only the radiation onc. I think we need an MRI to compare apples to apples for sure, but can melanoma be treated with radiation and NOT be killed?
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- June 6, 2014 at 1:22 am
I've had 2 radiations to my spine. The melanoma is still there but not as many cells. However the 2nd radiation to the same spot was needed because the tumor started growing again. It is my understanding that immunotherapies such as pd-1 and ctla-4 can provide long lasting control of the disease. There is some evidence that radiation combined with immunotherapy medicines can provide better results than either by itself. There are also medicines that target specific genes like the braf medicines. This requires testing the tumor to see if it has that gene thus allowing these medicines to be used. However for so few tumors at this time I would probably save the braf medicines for later. There are other medicines that target other genes that work as immunotherapy but they are just starting to try them.
I would suggest seeing a medical oncologist who specializes in melanoma. A regular medical oncologist would typically be overwhelmed because most of the melanoma medicines are very new.
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- June 6, 2014 at 7:50 pm
Thank you for the input. We have the Florida Cancer Specialists here in Central FL and will do some research to find one that specializes in Melanoma. I have to check out things on the side as my husband does not want to talk about going to a doctor, and especiall a medical oncologist. I know if his current doctor suggests it, then he would go. So strange how it is the elephant in the room. Thanks again, Mary
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- June 6, 2014 at 7:50 pm
Thank you for the input. We have the Florida Cancer Specialists here in Central FL and will do some research to find one that specializes in Melanoma. I have to check out things on the side as my husband does not want to talk about going to a doctor, and especiall a medical oncologist. I know if his current doctor suggests it, then he would go. So strange how it is the elephant in the room. Thanks again, Mary
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- June 6, 2014 at 7:50 pm
Thank you for the input. We have the Florida Cancer Specialists here in Central FL and will do some research to find one that specializes in Melanoma. I have to check out things on the side as my husband does not want to talk about going to a doctor, and especiall a medical oncologist. I know if his current doctor suggests it, then he would go. So strange how it is the elephant in the room. Thanks again, Mary
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- June 6, 2014 at 1:22 am
I've had 2 radiations to my spine. The melanoma is still there but not as many cells. However the 2nd radiation to the same spot was needed because the tumor started growing again. It is my understanding that immunotherapies such as pd-1 and ctla-4 can provide long lasting control of the disease. There is some evidence that radiation combined with immunotherapy medicines can provide better results than either by itself. There are also medicines that target specific genes like the braf medicines. This requires testing the tumor to see if it has that gene thus allowing these medicines to be used. However for so few tumors at this time I would probably save the braf medicines for later. There are other medicines that target other genes that work as immunotherapy but they are just starting to try them.
I would suggest seeing a medical oncologist who specializes in melanoma. A regular medical oncologist would typically be overwhelmed because most of the melanoma medicines are very new.
-
- June 6, 2014 at 1:22 am
I've had 2 radiations to my spine. The melanoma is still there but not as many cells. However the 2nd radiation to the same spot was needed because the tumor started growing again. It is my understanding that immunotherapies such as pd-1 and ctla-4 can provide long lasting control of the disease. There is some evidence that radiation combined with immunotherapy medicines can provide better results than either by itself. There are also medicines that target specific genes like the braf medicines. This requires testing the tumor to see if it has that gene thus allowing these medicines to be used. However for so few tumors at this time I would probably save the braf medicines for later. There are other medicines that target other genes that work as immunotherapy but they are just starting to try them.
I would suggest seeing a medical oncologist who specializes in melanoma. A regular medical oncologist would typically be overwhelmed because most of the melanoma medicines are very new.
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