› Forums › General Melanoma Community › Just diagnosed with stage IV – in South Africa
- This topic has 9 replies, 3 voices, and was last updated 11 years, 3 months ago by
ukritam.
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- November 21, 2013 at 2:52 pm
My husband was diagnosed with stage IV melanoma two weeks ago after a large brain tumor was removed. The tumor was 6cm x 5.3 cm x 5.2 cm and was a metastasized melanoma. What started out as suspected depression 8 weeks ago turned into a nightmare roller coaster ride.
The tumor was removed completely and a PET scan last week showed no other tumors – it did show however that he has Polycystic Kidney Disease (which explained a lot of his health problems). His kidneys are both significantly enlarged and misformed with multiple cysts, he also has cysts in his liver and spleen. His mitral valve is no longer functioning 100% and and and… Within a week he came face to face two enemies! Either one of the two will kill him. The oncologists though aren't even bothered by the PKD. I suppose melanoma is a bit more urgent than the fact that his kidneys will fail in a few (5 – 10) years.
He was at the dermatologist yesterday. The dermatologist took two skin shavings, but he said there is nothing even remotely resembling a primary tumor. We will have the results for the skin shavings tomorrow, but I suspect they will be clean since this is what the dermatologist said.
My question is really this: the oncologist recommends a single SRS session in two or three weeks and then nothing – just scans every three months. It feels so unsafe! They say without the SRS the brain tumor will be back in less than 6 months, with the SRS it can be longer. Shouldn't the treatment be more aggressive? Since the melanoma spread through his blood, shouldn't we try to do something more than wait?
I know there are other South Africans on this forum – please can you tell me who the oncologists are that know melanoma?
My hubby is 51 going on 30 – he has always been energetic and adventurous. Four weeks after his craniotomy I'm fighting to keep him off his motor bike. He still had staples in his wound when he was back on the driving range to check if his swing is still OK.
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- November 21, 2013 at 7:54 pm
Hello Tina,
First I would suggest finding a melanoma specialist, no a generic oncologist.
If the PET scan showed no other tumors he is NED (no evidence of disease) right now. This is great news.
You have to ask if the melanoma is BRAF positive. In this case you can use braf inhibitor in the future, but if you don't want to wait there is a trial for resected melanoma with vemurafenib in South Africa. I found it at http://www.clinicaltrials.gov/ct2/show/NCT01667419?term=south+africa+melanoma&recr=Open&rank=4. I don´t you if it is the best option. Ask your doctor.
God bless
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- November 21, 2013 at 7:54 pm
Hello Tina,
First I would suggest finding a melanoma specialist, no a generic oncologist.
If the PET scan showed no other tumors he is NED (no evidence of disease) right now. This is great news.
You have to ask if the melanoma is BRAF positive. In this case you can use braf inhibitor in the future, but if you don't want to wait there is a trial for resected melanoma with vemurafenib in South Africa. I found it at http://www.clinicaltrials.gov/ct2/show/NCT01667419?term=south+africa+melanoma&recr=Open&rank=4. I don´t you if it is the best option. Ask your doctor.
God bless
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- November 21, 2013 at 7:54 pm
Hello Tina,
First I would suggest finding a melanoma specialist, no a generic oncologist.
If the PET scan showed no other tumors he is NED (no evidence of disease) right now. This is great news.
You have to ask if the melanoma is BRAF positive. In this case you can use braf inhibitor in the future, but if you don't want to wait there is a trial for resected melanoma with vemurafenib in South Africa. I found it at http://www.clinicaltrials.gov/ct2/show/NCT01667419?term=south+africa+melanoma&recr=Open&rank=4. I don´t you if it is the best option. Ask your doctor.
God bless
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- November 21, 2013 at 11:41 pm
I am sorry that you and your husband are going through this.
The standard of care for melanoma that has been completely removed by surgery is observation, but other options do exist.
Some people take interferon, but I am not sure that is covered in South Africa.. In the US and Canada a study is open to see if ipilimumab helps lower recurrence for fully resected patients with high risk of recurrence. I don't know if that study is available in South Africa, but it might be worth exploring.
And, as has been mentioned, a similar study is available if the tumor had the BRAF mutation. Your doctor should be able to tell you that.
I have often thought that the hardest thing is to do nothing. Sometimes that is the only or the best option, but you certainly are right in exploring every alternative.
Tim–MRF
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- November 21, 2013 at 11:41 pm
I am sorry that you and your husband are going through this.
The standard of care for melanoma that has been completely removed by surgery is observation, but other options do exist.
Some people take interferon, but I am not sure that is covered in South Africa.. In the US and Canada a study is open to see if ipilimumab helps lower recurrence for fully resected patients with high risk of recurrence. I don't know if that study is available in South Africa, but it might be worth exploring.
And, as has been mentioned, a similar study is available if the tumor had the BRAF mutation. Your doctor should be able to tell you that.
I have often thought that the hardest thing is to do nothing. Sometimes that is the only or the best option, but you certainly are right in exploring every alternative.
Tim–MRF
-
- November 21, 2013 at 11:41 pm
I am sorry that you and your husband are going through this.
The standard of care for melanoma that has been completely removed by surgery is observation, but other options do exist.
Some people take interferon, but I am not sure that is covered in South Africa.. In the US and Canada a study is open to see if ipilimumab helps lower recurrence for fully resected patients with high risk of recurrence. I don't know if that study is available in South Africa, but it might be worth exploring.
And, as has been mentioned, a similar study is available if the tumor had the BRAF mutation. Your doctor should be able to tell you that.
I have often thought that the hardest thing is to do nothing. Sometimes that is the only or the best option, but you certainly are right in exploring every alternative.
Tim–MRF
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- February 17, 2014 at 7:01 pm
Hi Tina,
My husband is stage 3 and undergoing immunotherapy – Interferon. We also struggled to find an oncologist we feel comfortable with. Dr Vorobiof from the Sandton Oncology centre is fantastic and specialises in Melanoma. He is also very involved with medical trials.
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- February 17, 2014 at 7:01 pm
Hi Tina,
My husband is stage 3 and undergoing immunotherapy – Interferon. We also struggled to find an oncologist we feel comfortable with. Dr Vorobiof from the Sandton Oncology centre is fantastic and specialises in Melanoma. He is also very involved with medical trials.
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- February 17, 2014 at 7:01 pm
Hi Tina,
My husband is stage 3 and undergoing immunotherapy – Interferon. We also struggled to find an oncologist we feel comfortable with. Dr Vorobiof from the Sandton Oncology centre is fantastic and specialises in Melanoma. He is also very involved with medical trials.
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