› Forums › General Melanoma Community › Aggravated and scared.
- This topic has 18 replies, 4 voices, and was last updated 13 years, 6 months ago by
Mrsgkr.
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- March 6, 2012 at 12:26 am
My husband Gary was diagnosed with stage 3c back in September 2011. He had a wle and lymphadenectomy on Dec 8, 2011. He has already had a recurrence and no treatment has been started. He had yet another biopsy done on March 1. No call from the ordering doctor yet, but we were able to go to the hospital and get a copy of the report. It was finalized and sent back to the ordering doctor the following day.
My husband Gary was diagnosed with stage 3c back in September 2011. He had a wle and lymphadenectomy on Dec 8, 2011. He has already had a recurrence and no treatment has been started. He had yet another biopsy done on March 1. No call from the ordering doctor yet, but we were able to go to the hospital and get a copy of the report. It was finalized and sent back to the ordering doctor the following day. This makes my husband feel like this doctor doesn't want to do anything to help. I am going to call other doctors tomorrow for my husband to see. Maybe one of them will help. Doing some form of treatment is better than none at all.
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- March 6, 2012 at 1:27 am
I am assuming you are waiting to hear from the surgeon. Gary needs to be seeing a melanoma oncologist. I saw in your profile that you live in the Norfolk area. You might want to look up Debbie from Va and Jerry from Fauq. They both have a melanoma oncologist that they are happy with at UVA.
A surgeon would not usually be giving you other options like trials.
There was an discussion today that once NED there aren't many options.
Linda
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- March 7, 2012 at 12:04 am
Thank you for your reply Linda. No, we are not waiting to hear from the surgeon. It was the hematologist/oncologist that ordered the latest biopsy. I called them again this morning and left a message. No one called me back.
I also called his surgeons office today and spoke with his medical assistant. She is the only one that has ever stayed in constant contact with us. She even gave me her email in order to stay in communication. She said she would talk to the surgeon and see if he can recommend another oncologist that's not associated with the same practice.
I'm not real familiar with the site yet, but I'll see if I can find the folks you mentioned.
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- March 7, 2012 at 12:04 am
Thank you for your reply Linda. No, we are not waiting to hear from the surgeon. It was the hematologist/oncologist that ordered the latest biopsy. I called them again this morning and left a message. No one called me back.
I also called his surgeons office today and spoke with his medical assistant. She is the only one that has ever stayed in constant contact with us. She even gave me her email in order to stay in communication. She said she would talk to the surgeon and see if he can recommend another oncologist that's not associated with the same practice.
I'm not real familiar with the site yet, but I'll see if I can find the folks you mentioned.
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- March 7, 2012 at 12:04 am
Thank you for your reply Linda. No, we are not waiting to hear from the surgeon. It was the hematologist/oncologist that ordered the latest biopsy. I called them again this morning and left a message. No one called me back.
I also called his surgeons office today and spoke with his medical assistant. She is the only one that has ever stayed in constant contact with us. She even gave me her email in order to stay in communication. She said she would talk to the surgeon and see if he can recommend another oncologist that's not associated with the same practice.
I'm not real familiar with the site yet, but I'll see if I can find the folks you mentioned.
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- March 6, 2012 at 1:27 am
I am assuming you are waiting to hear from the surgeon. Gary needs to be seeing a melanoma oncologist. I saw in your profile that you live in the Norfolk area. You might want to look up Debbie from Va and Jerry from Fauq. They both have a melanoma oncologist that they are happy with at UVA.
A surgeon would not usually be giving you other options like trials.
There was an discussion today that once NED there aren't many options.
Linda
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- March 6, 2012 at 1:27 am
I am assuming you are waiting to hear from the surgeon. Gary needs to be seeing a melanoma oncologist. I saw in your profile that you live in the Norfolk area. You might want to look up Debbie from Va and Jerry from Fauq. They both have a melanoma oncologist that they are happy with at UVA.
A surgeon would not usually be giving you other options like trials.
There was an discussion today that once NED there aren't many options.
Linda
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- March 6, 2012 at 1:36 am
Are your husband's doctors oncologists who specalize in melanoma? If so great! If not, I would recommend seeking out the nearest Melanoma Treatment Center.
http://www.melanoma.org/learn-more/melanoma-treatment-centers
It is some work to have records copied and sent, it's worth it.
The waiting is excruciating. I feel your pain. And if we, as caregivers, think it's a long wait I can only imagine what it must be like to be our patients.
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- March 7, 2012 at 12:12 am
Thank you for your reply SRS. The only thing listed for the doctor he's seen is Medical Oncologist and Hematologist.
We have copies of all medical precedures, ct scans, etc that have been done since the beginning.
The nearest melanoma treatment center is about 3 hours from us.
Yes, the waiting is excruciating! No other doctors have ever taken this long to get back with us.
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- March 7, 2012 at 4:36 am
Be glad to talk with you here, in chat, on emails, or on the phone.
I highly respect Dr Craig Slingluff, my Surgical melanoma specialist. He is a great, caring person who is extremely knowledge on what is going on in the melanoma world. Following is his info from the signature block of an email I received from him yesterday morning. (He sent it out at 01:17 AM. Does this man ever sleep?) He is not only one of the top melanoma surgeons in the world, but also conducts research thru vacines he is developing as well as participating in some other clinical trials. He and the Hematologist/Oncologist he reffered me to (Dr G. Weiss, head of the Medical Oncology department at UVA.) are both working to expand UVA's participation in additional trial. They are both extremely busy, but have always been readily assessable when I have wanted contact. When Debbie's Melanoma Oncologist refused to complete her treatments of IL-2, she asked me to refer her to Dr. Weiss. I did so and he saw her immediately. He finished up her course of IL-2 treatments. She has been NED for five years now.
Craig L. Slingluff, Jr. M.D. Joseph Helms Farrow Professor of Surgery Division of Surgical Oncology Vice-Chair for Research Director, Human Immune Therapy Center University of Virginia Charlottesville, VA 22908 [email protected]<mailto:[email protected]> 434-924-1730
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- March 8, 2012 at 12:04 am
I want to thank everyone that replied.
I got a call from the oncologist today. He wanted to see Gary ASAP.
He said he got the report back yesterday (questionable). He said the biopsy showed the melanoma has spread to the axillary lymph node and there were two questionable spots on his lung. We spoke to him for about a half hour and he explained the options available. The Onc spoke with the radiologist (they work in the same building) and they made arrangements for Gary to be mapped out again tomorrow to include the new lesions and the axillary area. He'll start radiation on Monday. The Onc also wants to put him on a pill form of radiation. That will start on Tuesday.
It's been 6 months since he diagnosed, but it seems like it's been so much longer!
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- March 8, 2012 at 12:04 am
I want to thank everyone that replied.
I got a call from the oncologist today. He wanted to see Gary ASAP.
He said he got the report back yesterday (questionable). He said the biopsy showed the melanoma has spread to the axillary lymph node and there were two questionable spots on his lung. We spoke to him for about a half hour and he explained the options available. The Onc spoke with the radiologist (they work in the same building) and they made arrangements for Gary to be mapped out again tomorrow to include the new lesions and the axillary area. He'll start radiation on Monday. The Onc also wants to put him on a pill form of radiation. That will start on Tuesday.
It's been 6 months since he diagnosed, but it seems like it's been so much longer!
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- March 8, 2012 at 12:04 am
I want to thank everyone that replied.
I got a call from the oncologist today. He wanted to see Gary ASAP.
He said he got the report back yesterday (questionable). He said the biopsy showed the melanoma has spread to the axillary lymph node and there were two questionable spots on his lung. We spoke to him for about a half hour and he explained the options available. The Onc spoke with the radiologist (they work in the same building) and they made arrangements for Gary to be mapped out again tomorrow to include the new lesions and the axillary area. He'll start radiation on Monday. The Onc also wants to put him on a pill form of radiation. That will start on Tuesday.
It's been 6 months since he diagnosed, but it seems like it's been so much longer!
-
- March 7, 2012 at 4:36 am
Be glad to talk with you here, in chat, on emails, or on the phone.
I highly respect Dr Craig Slingluff, my Surgical melanoma specialist. He is a great, caring person who is extremely knowledge on what is going on in the melanoma world. Following is his info from the signature block of an email I received from him yesterday morning. (He sent it out at 01:17 AM. Does this man ever sleep?) He is not only one of the top melanoma surgeons in the world, but also conducts research thru vacines he is developing as well as participating in some other clinical trials. He and the Hematologist/Oncologist he reffered me to (Dr G. Weiss, head of the Medical Oncology department at UVA.) are both working to expand UVA's participation in additional trial. They are both extremely busy, but have always been readily assessable when I have wanted contact. When Debbie's Melanoma Oncologist refused to complete her treatments of IL-2, she asked me to refer her to Dr. Weiss. I did so and he saw her immediately. He finished up her course of IL-2 treatments. She has been NED for five years now.
Craig L. Slingluff, Jr. M.D. Joseph Helms Farrow Professor of Surgery Division of Surgical Oncology Vice-Chair for Research Director, Human Immune Therapy Center University of Virginia Charlottesville, VA 22908 [email protected]<mailto:[email protected]> 434-924-1730
-
- March 7, 2012 at 4:36 am
Be glad to talk with you here, in chat, on emails, or on the phone.
I highly respect Dr Craig Slingluff, my Surgical melanoma specialist. He is a great, caring person who is extremely knowledge on what is going on in the melanoma world. Following is his info from the signature block of an email I received from him yesterday morning. (He sent it out at 01:17 AM. Does this man ever sleep?) He is not only one of the top melanoma surgeons in the world, but also conducts research thru vacines he is developing as well as participating in some other clinical trials. He and the Hematologist/Oncologist he reffered me to (Dr G. Weiss, head of the Medical Oncology department at UVA.) are both working to expand UVA's participation in additional trial. They are both extremely busy, but have always been readily assessable when I have wanted contact. When Debbie's Melanoma Oncologist refused to complete her treatments of IL-2, she asked me to refer her to Dr. Weiss. I did so and he saw her immediately. He finished up her course of IL-2 treatments. She has been NED for five years now.
Craig L. Slingluff, Jr. M.D. Joseph Helms Farrow Professor of Surgery Division of Surgical Oncology Vice-Chair for Research Director, Human Immune Therapy Center University of Virginia Charlottesville, VA 22908 [email protected]<mailto:[email protected]> 434-924-1730
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- March 7, 2012 at 12:12 am
Thank you for your reply SRS. The only thing listed for the doctor he's seen is Medical Oncologist and Hematologist.
We have copies of all medical precedures, ct scans, etc that have been done since the beginning.
The nearest melanoma treatment center is about 3 hours from us.
Yes, the waiting is excruciating! No other doctors have ever taken this long to get back with us.
-
- March 7, 2012 at 12:12 am
Thank you for your reply SRS. The only thing listed for the doctor he's seen is Medical Oncologist and Hematologist.
We have copies of all medical precedures, ct scans, etc that have been done since the beginning.
The nearest melanoma treatment center is about 3 hours from us.
Yes, the waiting is excruciating! No other doctors have ever taken this long to get back with us.
-
- March 6, 2012 at 1:36 am
Are your husband's doctors oncologists who specalize in melanoma? If so great! If not, I would recommend seeking out the nearest Melanoma Treatment Center.
http://www.melanoma.org/learn-more/melanoma-treatment-centers
It is some work to have records copied and sent, it's worth it.
The waiting is excruciating. I feel your pain. And if we, as caregivers, think it's a long wait I can only imagine what it must be like to be our patients.
-
- March 6, 2012 at 1:36 am
Are your husband's doctors oncologists who specalize in melanoma? If so great! If not, I would recommend seeking out the nearest Melanoma Treatment Center.
http://www.melanoma.org/learn-more/melanoma-treatment-centers
It is some work to have records copied and sent, it's worth it.
The waiting is excruciating. I feel your pain. And if we, as caregivers, think it's a long wait I can only imagine what it must be like to be our patients.
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