1. < Neuroendocrine Tumors (NETs)

Concerned about ulcers, lesions that may not be caused by treatment

Posted by triveraderubio @triveraderubio, Jan 26 6:14am

Good morning.

I mentioned a while back that I was diagnosed with Malignant Neuroendocrine of the Lungs and have been undergoing Sandostatin LAR 30 mg/28 days since November 2021. Before starting the treatment, a small dot appeared on my right ankle, which grew and became infected. I didn't pay much attention to it. In January 2022, more dots appeared on both legs and my upper arms. Between the oncologist's visits, I sought appointments with dermatologists, which resulted in a battery of blood work, 3 biopsies from three different growths ending with 3 different diagnoses: Lipodermatosclerosis, Pyoderma Gangrenosum, and Erythema Nodosum. I also went to a Vein Specialist who mentioned this is not associated with vein deficiency.

The medication prescribed for the onset of ulcers includes Tacrolimus Ointment, Ammonium Lactate, Mupirocin Ointment, Betamethasone Cream, Prednisone 20 mg, Doxycycline, and Potassium Iodide. However, none of these have worked. The ulcers continue to surface, starting as a small red dot, changing appearance, and becoming infected, showing yellow purulent drainage.

Yesterday, my oncologist reviewed the blood work and biopsy results and does not think it is a side effect of the treatment. He noticed the largest ulcer (a silver dollar size) and suggested I see a dermatologist at Mayo Clinic for further evaluation. I do not know what else to do. The ulcers hurt very much; another one just appeared in the middle of my nostrils and is growing. I am seeking an appointment at Mayo Clinic in Jacksonville and praying I can get one.

Has anyone experienced this type of issue?

Appreciate everyone's feedback.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

dbamos1945 | @dbamos1945 | Jan 28 3:43pm

Triveraderubio: These red dots that develop into sores are a symptom I have had for many, many years. No specialists (many) have been able to diagnose a cause. Dermatologists have been no help.
I have experienced Fewer episodes recently thank goodness, because I am battling a rare cancer diagnosed 2023.
I have never known anyone that had these red dot sores. I am open to discussion with you and want more info on treatments that may have helped you.

REPLY
2 replies
triveraderubio | @triveraderubio | Jan 29 7:50am
In reply to @dbamos1945 "Triveraderubio: These red dots that develop into sores are a symptom I have had for many,..." + (show)
@dbamos1945

Triveraderubio: These red dots that develop into sores are a symptom I have had for many, many years. No specialists (many) have been able to diagnose a cause. Dermatologists have been no help.
I have experienced Fewer episodes recently thank goodness, because I am battling a rare cancer diagnosed 2023.
I have never known anyone that had these red dot sores. I am open to discussion with you and want more info on treatments that may have helped you.

Jump to this post

Good morning @dbamos1945
The medication prescribed for the onset of ulcers includes Tacrolimus Ointment, Ammonium Lactate, Mupirocin Ointment, Betamethasone Cream, Prednisone 20 mg, Doxycycline, and Potassium Iodide. However, none of these have worked. The ulcers continue to surface, starting as a small red dot, changing appearance, and becoming infected, showing yellow purulent drainage.

I hope to secure an appointment at Mayo Clinic soon and will let you know the results. Thanks again, and Bless your heart.

triveraderubio

REPLY
1 reply
netmike | @netmike | Feb 8 9:23am
In reply to @triveraderubio "Good morning @dbamos1945 The medication prescribed for the onset of ulcers includes Tacrolimus Ointment, Ammonium Lactate,..." + (show)
@triveraderubio

Good morning @dbamos1945
The medication prescribed for the onset of ulcers includes Tacrolimus Ointment, Ammonium Lactate, Mupirocin Ointment, Betamethasone Cream, Prednisone 20 mg, Doxycycline, and Potassium Iodide. However, none of these have worked. The ulcers continue to surface, starting as a small red dot, changing appearance, and becoming infected, showing yellow purulent drainage.

I hope to secure an appointment at Mayo Clinic soon and will let you know the results. Thanks again, and Bless your heart.

triveraderubio

Jump to this post

I can only speak for myself. But I went on a new food plan 7 months ago and it has changed my well being immensely. It wasn't and isn't easy but I feel so much better in every way. I went to carnivore but , most people see amazing results with removal of all seed oils, sugar, and processed food. Whole foods makes a big difference. I went further to eliminate all plants. It wasn't easy as I was addicted to sweets. But I feel amazing and my skin is 99% better, hair, joints and the list is too long to go into. This is NOT looked upon by the general medical community as healthy but I researched extensively. It works for me 100%

REPLY
netmike | @netmike | Feb 8 9:27am
In reply to @dbamos1945 "Triveraderubio: These red dots that develop into sores are a symptom I have had for many,..." + (show)
@dbamos1945

Triveraderubio: These red dots that develop into sores are a symptom I have had for many, many years. No specialists (many) have been able to diagnose a cause. Dermatologists have been no help.
I have experienced Fewer episodes recently thank goodness, because I am battling a rare cancer diagnosed 2023.
I have never known anyone that had these red dot sores. I am open to discussion with you and want more info on treatments that may have helped you.

Jump to this post

I have seen many many cases of varying skin conditions eliminated by food changes. I did not have severe skin ailments, just small ones. But mine are gone. I am grateful. Eliminate all sugars and processed foods. Low carb /no carb (I do less than 20 a day is my goal) and I spread those out over the day. Got rid of 99% of my inflammation

REPLY
1 reply
triveraderubio | @triveraderubio | Feb 8 9:46am
In reply to @netmike "I have seen many many cases of varying skin conditions eliminated by food changes. I did..." + (show)
@netmike

I have seen many many cases of varying skin conditions eliminated by food changes. I did not have severe skin ailments, just small ones. But mine are gone. I am grateful. Eliminate all sugars and processed foods. Low carb /no carb (I do less than 20 a day is my goal) and I spread those out over the day. Got rid of 99% of my inflammation

Jump to this post

@netminetmike

Thank you for your response. I will start my research. I want to know what it is and where it stems from.

Unfortunately, I could not obtain an appointment with the Mayo Clinic at the Dermatology Dept as they have reached their CAP on patients who have Medicare.

Thanks again.

REPLY
1 reply
netmike | @netmike | Feb 8 9:53am
In reply to @triveraderubio "@netminetmike Thank you for your response. I will start my research. I want to know what..." + (show)
@triveraderubio

@netminetmike

Thank you for your response. I will start my research. I want to know what it is and where it stems from.

Unfortunately, I could not obtain an appointment with the Mayo Clinic at the Dermatology Dept as they have reached their CAP on patients who have Medicare.

Thanks again.

Jump to this post

I would suggest a particular YouTube account. Her name is Michelle Peterson. I may have spelled it wrong. But you will find it. Her dad is Jordan Peterson. He is a MD. But I would find a blog that speaks to YOU. as how to correct it. Michella had many auto immune issues which I think is your issue. It won't be easy to stick to but just remember how you feel now and imagine how you felt years ago. It is a amazing. It is like a computer reboot to factory settings for your body.

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