› Forums › General Melanoma Community › Desmoplastic Spindle Cell- need some advise
- This topic has 9 replies, 3 voices, and was last updated 12 years, 1 month ago by
DonW.
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- March 1, 2012 at 6:43 pm
Hello,
My husband had a lump in his head since May 2011. The dermatologist checked the lump in November 2011 and thought that was just some kind of inflamation. My husband insisted for a biopsy. After 2 biopsy, he was diagnosed with Melanoma in January 2011. He had a surgery in February 2012 and we just got a result that the type of cancer is spindle Cell Melanoma. Doctor gives it approx. 50 – 50 chance this has spread already.
Hello,
My husband had a lump in his head since May 2011. The dermatologist checked the lump in November 2011 and thought that was just some kind of inflamation. My husband insisted for a biopsy. After 2 biopsy, he was diagnosed with Melanoma in January 2011. He had a surgery in February 2012 and we just got a result that the type of cancer is spindle Cell Melanoma. Doctor gives it approx. 50 – 50 chance this has spread already.
My husband is going to have another excission to widen in situ margin and also to widen clear margin from invasive area to create extra buffer zone — probably in a month (about 2 months after initial surgery) to allow for healing / reduction of inflamation before going back in. That is all the conventional treatment his doctor is intending at this point. I'm wondering if there is other treatmenta my husband needs to consider.
We live in Seattle, does anyone know if there is any Desmoplastic specialists in the area? I read somewhere, that spindle cell melanoma should be treated like soft tissue sarcoma. Is this correct? If there is anyone out there that has a similar experience, please share.. thank you
Below is some info about the cancer and the stuff that he has been taking.
Type: Spindel Cell melanoma
Location: Vertex of scalp (top of head) Depth: 4.3 mm
NOT ulcerated
Lymph nodes clear (sentinnel lymph node biopsy)
Mitotic rate: 8
blood vessel involvement indicated
classed currently as 2b
First surgery:
- clear margin on invasive part, narrow margin on one part of in-situ area
Immune support steps:
- Vitamin C (4-5 grams daily),
- Vitamin D (4,00 iu daily — His D levels were exceptionally low (7)
- fish oil (4 grams daily), T
- turkey tail mushroom extract (20 – 25 drops 3X daily),
- Lots of fruit and vegetables, tumeric and brocolli daily, fresh and/or roasted garlic most days.
- IV vitamin C push
Possible steps under consideration:
- Some type of scan — PET, diagnostic CT, etc. Need to figure out if there is any value in doing a scan at this point. Conventionally, they are saying not a lot they can do if it spreads, so no point in scanning before symptoms would appear — IDing early spread is not particularly beneficial to outcome… (need input on if this is accurate or not).
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- March 1, 2012 at 9:50 pm
First of all, I would like to say welcome. This is the place to come for information and support. Everyone on this board is always willing to help.
Next, if you are not seeing a melanoma specialist I suggest you see one soon as mentioned in the previous post.
My husband had his melanoma on his scalp and his sentinal node biopsy came back negative and he also had the wide excision. In 9 months his second surgery for another tumor in close proximity to the first. So it is possible to get a return even if SNB and WE are both done. Now every individual is different so not to say your husband will have the same as mine, but it is possible. In 3 years he went to stage IV and now is in a clinical trial. You can read more about him if you click on his name.
His vitamin D is really very low. My experience with vitamin D is that very low also tends to allow you to break bones and I have seen where Drs. give 50,000 units a week to such individuals for 8 to 12 weeks to bring it up to the higher percentages where it should be. Upon much research anything below 60% is way to low and your husband being at 7% is extremely low. I know because mine was at 17%. I now take it as a daily regiment to keep mine up in the 60% or above range and cancer patients also have a tendency for a lower range and need to raise it to help fight the cancer. My husbands research nurse said it has been proven to help with colon cancer and breast cancer and may be a great asset to other types of cancer especially melanoma.
Wishing you all the best but hoping you find a melanoma specialist if you don't already have one.
Judy (loving wife and caregiver of Gene Stage IV)
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- March 1, 2012 at 9:50 pm
First of all, I would like to say welcome. This is the place to come for information and support. Everyone on this board is always willing to help.
Next, if you are not seeing a melanoma specialist I suggest you see one soon as mentioned in the previous post.
My husband had his melanoma on his scalp and his sentinal node biopsy came back negative and he also had the wide excision. In 9 months his second surgery for another tumor in close proximity to the first. So it is possible to get a return even if SNB and WE are both done. Now every individual is different so not to say your husband will have the same as mine, but it is possible. In 3 years he went to stage IV and now is in a clinical trial. You can read more about him if you click on his name.
His vitamin D is really very low. My experience with vitamin D is that very low also tends to allow you to break bones and I have seen where Drs. give 50,000 units a week to such individuals for 8 to 12 weeks to bring it up to the higher percentages where it should be. Upon much research anything below 60% is way to low and your husband being at 7% is extremely low. I know because mine was at 17%. I now take it as a daily regiment to keep mine up in the 60% or above range and cancer patients also have a tendency for a lower range and need to raise it to help fight the cancer. My husbands research nurse said it has been proven to help with colon cancer and breast cancer and may be a great asset to other types of cancer especially melanoma.
Wishing you all the best but hoping you find a melanoma specialist if you don't already have one.
Judy (loving wife and caregiver of Gene Stage IV)
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- March 1, 2012 at 9:50 pm
First of all, I would like to say welcome. This is the place to come for information and support. Everyone on this board is always willing to help.
Next, if you are not seeing a melanoma specialist I suggest you see one soon as mentioned in the previous post.
My husband had his melanoma on his scalp and his sentinal node biopsy came back negative and he also had the wide excision. In 9 months his second surgery for another tumor in close proximity to the first. So it is possible to get a return even if SNB and WE are both done. Now every individual is different so not to say your husband will have the same as mine, but it is possible. In 3 years he went to stage IV and now is in a clinical trial. You can read more about him if you click on his name.
His vitamin D is really very low. My experience with vitamin D is that very low also tends to allow you to break bones and I have seen where Drs. give 50,000 units a week to such individuals for 8 to 12 weeks to bring it up to the higher percentages where it should be. Upon much research anything below 60% is way to low and your husband being at 7% is extremely low. I know because mine was at 17%. I now take it as a daily regiment to keep mine up in the 60% or above range and cancer patients also have a tendency for a lower range and need to raise it to help fight the cancer. My husbands research nurse said it has been proven to help with colon cancer and breast cancer and may be a great asset to other types of cancer especially melanoma.
Wishing you all the best but hoping you find a melanoma specialist if you don't already have one.
Judy (loving wife and caregiver of Gene Stage IV)
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- March 3, 2012 at 1:10 am
Welcome to MPIP, though of course no one prefers to have a reason to come here. I like in Kirkland, so we are neighbors of sorts. Where are you being treated? Generally the best place around here for melanoma is SCCA in Seattle, so you could get a second opinion there if you're not already going there. Dr. David Byrd there is a top melanoma surgical onc who is very knowledgeable.
As to the bit about scans. I never liked this idea that we shouldn't persue a diagnostic procedure because there's no good treatments anyway. This seems like a defeatist attitude to me, and most would prefer to stay on top of their situation as closely as possible. On the other hand, the number of recurrances that are found via scans as compared to symptoms is probably not real high, so there are docs who recommend scans and those who don't. It's up to you if you want to persue this, and I'm sure your husband could get scanned if you want.
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- March 3, 2012 at 1:10 am
Welcome to MPIP, though of course no one prefers to have a reason to come here. I like in Kirkland, so we are neighbors of sorts. Where are you being treated? Generally the best place around here for melanoma is SCCA in Seattle, so you could get a second opinion there if you're not already going there. Dr. David Byrd there is a top melanoma surgical onc who is very knowledgeable.
As to the bit about scans. I never liked this idea that we shouldn't persue a diagnostic procedure because there's no good treatments anyway. This seems like a defeatist attitude to me, and most would prefer to stay on top of their situation as closely as possible. On the other hand, the number of recurrances that are found via scans as compared to symptoms is probably not real high, so there are docs who recommend scans and those who don't. It's up to you if you want to persue this, and I'm sure your husband could get scanned if you want.
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- March 3, 2012 at 1:10 am
Welcome to MPIP, though of course no one prefers to have a reason to come here. I like in Kirkland, so we are neighbors of sorts. Where are you being treated? Generally the best place around here for melanoma is SCCA in Seattle, so you could get a second opinion there if you're not already going there. Dr. David Byrd there is a top melanoma surgical onc who is very knowledgeable.
As to the bit about scans. I never liked this idea that we shouldn't persue a diagnostic procedure because there's no good treatments anyway. This seems like a defeatist attitude to me, and most would prefer to stay on top of their situation as closely as possible. On the other hand, the number of recurrances that are found via scans as compared to symptoms is probably not real high, so there are docs who recommend scans and those who don't. It's up to you if you want to persue this, and I'm sure your husband could get scanned if you want.
Tagged: cutaneous melanoma
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