› Forums › Mucosal Melanoma Community › Malignant Melanoma Nasal Cavity
- This topic has 15 replies, 3 voices, and was last updated 11 years, 9 months ago by
barb3246.
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- June 27, 2012 at 10:51 pm
Well, I'm new to the group. I've been searching and reading this board for awhile and decided to seek out some help. My husband was diagnosed with malignant melanoma of the nasal cavity (mucosal) in April following a biopsy after surgery for what they thought was an inverted papilloma and no big deal. In May, he had another surgery to remove more of the nasal cavity melanoma as well as several lymph nodes, one of which tested positive. A nodule also showed on one lung but they originally were just going to keep an eye on it because it is small and i
Well, I'm new to the group. I've been searching and reading this board for awhile and decided to seek out some help. My husband was diagnosed with malignant melanoma of the nasal cavity (mucosal) in April following a biopsy after surgery for what they thought was an inverted papilloma and no big deal. In May, he had another surgery to remove more of the nasal cavity melanoma as well as several lymph nodes, one of which tested positive. A nodule also showed on one lung but they originally were just going to keep an eye on it because it is small and is a fairly common finding in the general population. After bouncing around from place to place, other doctors suspected that it was cancer and a Pet Scan was finally approved. It showed up as cancer on the scan. Now, because they don't know if it's a spread of the melanoma or a primary lung cancer, we are waiting for a biopsy (scheduled for next week) to determine the type before having surgery done to remove it. If it's melanoma, they will remove the nodule only. If it's primary lung cancer, they will remove the lobe. They suspect primary non small cell lung cancer. Meanwhile, a hole opened up through the nostril near the surgical incision and we are headed back to the doctor tomorrow to get that checked. Radiation is expected, but not until they do the lung surgery, and now not until the nose is taken care of. Chemo has been mentioned, specifically interferon for a year, subject to change depending on the biopsy results of the lung. He's been given an 80% chance on the lung cancer alone if it's a primary and if not, a 50% chance overall. I've asked about Gleevec if the melanoma is cKit positive and about BRAF but the doctors have no answers yet. Yervay has been mentioned to me by someone as something to look into. So, here we are, two months post diagnosis, with no treatment plan and time is ticking away. I understand that they have a lot to figure out and now the hole in the nose just complicates things even more. I'm tired, frustrated, scared, the whole nine yards. Trying to keep track of multiple appointments each week across a two hour drive is nearly a full time job, as I'm sure all of you are very much aware of. I'm trying to handle all of this while holding on to two part time jobs, which I need desperately right now, but I'm sure all of you have your own similar situations so this is not meant to be a whine. I'll just have to deal with it like everyone else in this boat. What I'm very much concerned about is the delay in treatment for my husband. I'm so afraid that this monster will rear up and take charge because we can't get the treatments started. How do any of you feel about the delay? I'm waiting for a call back from one of the doctors about my concerns over this but have heard nothing yet. Anyone on this board with this type of cancer? It's so rare and the few messages I've found elsewhere are a couple of years old. Current information is very difficult to find. I'm grasping at straws trying to find anything encouraging. Sorry it's such a long post. I thought I'd give the full story in hopes that someone here may be able to shed some more light on things for me. it's such a shock.
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- June 27, 2012 at 11:20 pm
Hello,
My mom was diagnose with Mucosal Melanoma in the nasal cavity last March 2012. Within a week of diagnose she had a surgery to remove the tumor. After surgery she had radiation and now the doctor has suggested Intreferon since her new scan show nothing. I share your frustration since all the doctors we haved talked to they truly don't know how the melanoma will behave and therefore there is no clear path on what to do. One thing my mom and I did right away after the diagnose was to scehdule an appoinment with an ND oncologyst. We truly believe it has helped her feel very strong and full of energy. She has not stopped working 40 hours per week as a preschool teacher.
Keep strong!
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- June 28, 2012 at 12:13 am
Thanks, Angelica. What is an ND oncologist? We have seen a melanoma specialist at the Hillman Cancer Center in Pittsburgh, PA and he is to oversee the treatment, which will be done locally. Everyone has said that my husband will be able to work through the radiation and we are hoping that he can. Sitting around the house and worrying isn't good! Best of luck to you and your Mom. I'll keep you in my prayers.
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- June 29, 2012 at 12:05 am
My true apologize for the confusion. Besides my mom's regular treatment at Swedish Cancer Care in Seattle we are part of an Oncology Naturopathic Care Research Center. They communicate with our medical and radiation oncologist to ensure truly integrated care. Her Naturopathic Doctor did many types of blood test making sure her body kept strong throughout radiation. She takes Vitamin D, Curcumin and something else which I can't remember. They also gave her something similar to alovera for her skin (nose radiation). Her skin never looked bad, just redish, and she didn't had to take any pain medicine. She walked to radiation every day and worked 40/week thoughout the entire treatment. Pretty much no side effects.When you have radiation on your nose area; the areas must affects are the mouth and the eyes. You might loss your taste buds and your palate can become very sore.
The radiation was a very tricky one due to the closeness to the eye and the brain. They did her treatment with a TomoTherapy® HI-ART, a form of radiation therapy, precisely targets tumors while reducing radiation exposure to surrounding normal tissue. This ensured that the rays were going to the specfic area treated.
Is your husband having a surgery?
I am happy to share the other little things we find were helpful, such as a sentive thoothpaste,etc.
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- June 30, 2012 at 1:08 am
Thank you for your respnse. I'll look into the info you gave me and am open to any other suggestions you may have. My husband did have surgery, twice, on the nose. The first surgery was supposed to be for what they thought was a simple problem. it wasn't until they got in there that they realized it could be much worse. The CT scans done prior to the surgery gave no indication that it could be so bad. The second surgery was much more extensive and they got clear margins on the nose. About 32 lymph nodes were removed, one of which was positive. More surgery is on the horizon as soon as they figure out what type of cancer is in the lung. The plan is to do a biopsy next week to determine the type of cancer, then do appropriate surgery on the lung. After that, treatment will begin and the type all depends on the lung situation. One thing we are puzzled about is that there is some doubt as to whether or not they will radiate the nose. They do plan on radiating the neck, the last we were told. I will be asking a lot of questions when the time comes, but I just don't get why they are even considering not radiating the nose. It has been suggested to us that one can only have so much radiation to the nose, that it may be a one time deal (entire 6 wk treatment), and that they are "saving" the radiation for the nose in case they need it later. Does that make any sense to you? I want to be ready with my questions and totally understand as much as the doctors can say about the situation. I find that the more I ask, the more they will open up and talk, which is only natural I guess.
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- June 30, 2012 at 1:08 am
Thank you for your respnse. I'll look into the info you gave me and am open to any other suggestions you may have. My husband did have surgery, twice, on the nose. The first surgery was supposed to be for what they thought was a simple problem. it wasn't until they got in there that they realized it could be much worse. The CT scans done prior to the surgery gave no indication that it could be so bad. The second surgery was much more extensive and they got clear margins on the nose. About 32 lymph nodes were removed, one of which was positive. More surgery is on the horizon as soon as they figure out what type of cancer is in the lung. The plan is to do a biopsy next week to determine the type of cancer, then do appropriate surgery on the lung. After that, treatment will begin and the type all depends on the lung situation. One thing we are puzzled about is that there is some doubt as to whether or not they will radiate the nose. They do plan on radiating the neck, the last we were told. I will be asking a lot of questions when the time comes, but I just don't get why they are even considering not radiating the nose. It has been suggested to us that one can only have so much radiation to the nose, that it may be a one time deal (entire 6 wk treatment), and that they are "saving" the radiation for the nose in case they need it later. Does that make any sense to you? I want to be ready with my questions and totally understand as much as the doctors can say about the situation. I find that the more I ask, the more they will open up and talk, which is only natural I guess.
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- June 30, 2012 at 1:08 am
Thank you for your respnse. I'll look into the info you gave me and am open to any other suggestions you may have. My husband did have surgery, twice, on the nose. The first surgery was supposed to be for what they thought was a simple problem. it wasn't until they got in there that they realized it could be much worse. The CT scans done prior to the surgery gave no indication that it could be so bad. The second surgery was much more extensive and they got clear margins on the nose. About 32 lymph nodes were removed, one of which was positive. More surgery is on the horizon as soon as they figure out what type of cancer is in the lung. The plan is to do a biopsy next week to determine the type of cancer, then do appropriate surgery on the lung. After that, treatment will begin and the type all depends on the lung situation. One thing we are puzzled about is that there is some doubt as to whether or not they will radiate the nose. They do plan on radiating the neck, the last we were told. I will be asking a lot of questions when the time comes, but I just don't get why they are even considering not radiating the nose. It has been suggested to us that one can only have so much radiation to the nose, that it may be a one time deal (entire 6 wk treatment), and that they are "saving" the radiation for the nose in case they need it later. Does that make any sense to you? I want to be ready with my questions and totally understand as much as the doctors can say about the situation. I find that the more I ask, the more they will open up and talk, which is only natural I guess.
-
- June 29, 2012 at 12:05 am
My true apologize for the confusion. Besides my mom's regular treatment at Swedish Cancer Care in Seattle we are part of an Oncology Naturopathic Care Research Center. They communicate with our medical and radiation oncologist to ensure truly integrated care. Her Naturopathic Doctor did many types of blood test making sure her body kept strong throughout radiation. She takes Vitamin D, Curcumin and something else which I can't remember. They also gave her something similar to alovera for her skin (nose radiation). Her skin never looked bad, just redish, and she didn't had to take any pain medicine. She walked to radiation every day and worked 40/week thoughout the entire treatment. Pretty much no side effects.When you have radiation on your nose area; the areas must affects are the mouth and the eyes. You might loss your taste buds and your palate can become very sore.
The radiation was a very tricky one due to the closeness to the eye and the brain. They did her treatment with a TomoTherapy® HI-ART, a form of radiation therapy, precisely targets tumors while reducing radiation exposure to surrounding normal tissue. This ensured that the rays were going to the specfic area treated.
Is your husband having a surgery?
I am happy to share the other little things we find were helpful, such as a sentive thoothpaste,etc.
-
- June 29, 2012 at 12:05 am
My true apologize for the confusion. Besides my mom's regular treatment at Swedish Cancer Care in Seattle we are part of an Oncology Naturopathic Care Research Center. They communicate with our medical and radiation oncologist to ensure truly integrated care. Her Naturopathic Doctor did many types of blood test making sure her body kept strong throughout radiation. She takes Vitamin D, Curcumin and something else which I can't remember. They also gave her something similar to alovera for her skin (nose radiation). Her skin never looked bad, just redish, and she didn't had to take any pain medicine. She walked to radiation every day and worked 40/week thoughout the entire treatment. Pretty much no side effects.When you have radiation on your nose area; the areas must affects are the mouth and the eyes. You might loss your taste buds and your palate can become very sore.
The radiation was a very tricky one due to the closeness to the eye and the brain. They did her treatment with a TomoTherapy® HI-ART, a form of radiation therapy, precisely targets tumors while reducing radiation exposure to surrounding normal tissue. This ensured that the rays were going to the specfic area treated.
Is your husband having a surgery?
I am happy to share the other little things we find were helpful, such as a sentive thoothpaste,etc.
-
- June 28, 2012 at 12:13 am
Thanks, Angelica. What is an ND oncologist? We have seen a melanoma specialist at the Hillman Cancer Center in Pittsburgh, PA and he is to oversee the treatment, which will be done locally. Everyone has said that my husband will be able to work through the radiation and we are hoping that he can. Sitting around the house and worrying isn't good! Best of luck to you and your Mom. I'll keep you in my prayers.
-
- June 28, 2012 at 12:13 am
Thanks, Angelica. What is an ND oncologist? We have seen a melanoma specialist at the Hillman Cancer Center in Pittsburgh, PA and he is to oversee the treatment, which will be done locally. Everyone has said that my husband will be able to work through the radiation and we are hoping that he can. Sitting around the house and worrying isn't good! Best of luck to you and your Mom. I'll keep you in my prayers.
-
- June 27, 2012 at 11:20 pm
Hello,
My mom was diagnose with Mucosal Melanoma in the nasal cavity last March 2012. Within a week of diagnose she had a surgery to remove the tumor. After surgery she had radiation and now the doctor has suggested Intreferon since her new scan show nothing. I share your frustration since all the doctors we haved talked to they truly don't know how the melanoma will behave and therefore there is no clear path on what to do. One thing my mom and I did right away after the diagnose was to scehdule an appoinment with an ND oncologyst. We truly believe it has helped her feel very strong and full of energy. She has not stopped working 40 hours per week as a preschool teacher.
Keep strong!
-
- June 27, 2012 at 11:20 pm
Hello,
My mom was diagnose with Mucosal Melanoma in the nasal cavity last March 2012. Within a week of diagnose she had a surgery to remove the tumor. After surgery she had radiation and now the doctor has suggested Intreferon since her new scan show nothing. I share your frustration since all the doctors we haved talked to they truly don't know how the melanoma will behave and therefore there is no clear path on what to do. One thing my mom and I did right away after the diagnose was to scehdule an appoinment with an ND oncologyst. We truly believe it has helped her feel very strong and full of energy. She has not stopped working 40 hours per week as a preschool teacher.
Keep strong!
-
- July 26, 2012 at 1:12 pm
I'm so sorry to hear about your husband, and I pray that he wins his battle with melanoma. I saw that the doctors originally thought he had a benign inverted papilloma. Could you tell me what it looked like? Was it darkly pigmented? Was he having any symptoms?
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- July 26, 2012 at 1:12 pm
I'm so sorry to hear about your husband, and I pray that he wins his battle with melanoma. I saw that the doctors originally thought he had a benign inverted papilloma. Could you tell me what it looked like? Was it darkly pigmented? Was he having any symptoms?
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- July 26, 2012 at 1:12 pm
I'm so sorry to hear about your husband, and I pray that he wins his battle with melanoma. I saw that the doctors originally thought he had a benign inverted papilloma. Could you tell me what it looked like? Was it darkly pigmented? Was he having any symptoms?
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Tagged: mucosal melanoma
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