Mycosis Fungoides and Cutaneous Lymphomas
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- เผยแพร่เมื่อ 15 ต.ค. 2024
- When the rash first appeared in 2008, Paul Raffer thought it was most likely something quite benign. With steroid treatment the rash would get better, but then it would come back, worse than before. After a consultation with a dermatology specialist ruled out an allergic reaction, a dermatopathologist took a second look at Raffer's skin and shared the results: mycosis fungoides, a type of lymphoma.
Read Paul's story: stanfordhospita...
For more information on mycosis fungoides and cutaneous lymphomas, please visit: cancer.stanford...
cancer.stanford... - วิทยาศาสตร์และเทคโนโลยี
In the 1970’s my mother had mycosis fungoide-sezary cell syndrome. At that time it seemed hardly a doctor knew what this disease was or how to treat it. She had a specialist, Dr. Zackheim that treated her but had lasting sensitivity on her skin and loss of her hair. But she loved every moment she lived until 2011.
I’m going to see Dr..Kim in 3 weeks. Can’t wait to find out what we can do. I’m ready!
I just finished 3 weeks of whole body electron beam therapy (total skin) at Stanford. I’m still healing but improving every day. Thank you Dr. Kim and Dr. Hoppe.
Look at the thread for my comment ... Bitter Apricot Kernels! God Bless You!
usarbo Are you okay now and totally healing?? Or still problems because I had this electron therapy (total skin) but was good with me just for 2 months and burned me a little in my hands
That's amazing my dad had mycosis fungoide as well. Moving to the southwest helped him and dried out his lesions after mutilple radiation treatments.
i have MF i had it since i was 11 years old, im 34 now. ive had spots all over my body. its apparently not in my blood just on my skin. i tried to UV light therapy and it got rid of most of the spots but they came back months later. im going to do light again soon. ive never met anyone else whos had the same thing its so rare. im pretty sure i was also the youngest person to get it at the time. it tooks YEARS AND YEARS AND YEARS before anyone could tell me what it was. i went through 100 doctors until someone finally told me what i have its been a pain in my ass my whole life.
Do you have hypopigmentation? I am looking for a diagnosis. I had a rash at 7 then progressed to hypopigmentation. I am 22 now.
Is it treated today
My lady has it, we’re trying to figure out a cure, she’s 27 and has stage 3
same aside from the money spent the frustration of doctors refusing to help is just crushing
Is this patient still in remission? Thank you for. Sharing!
My mother died from this disease because her doctors toyed and played around with her diagnoses at first they said it was ezcema and gave her cream to fix it. Well it never worked when she got a 5th opinion (literally) she was already in stage 4 of mycosis fungiodes 😔 worst experience of my life was losing her.
I’m so sorry 🙏❤️
My mother went to see the head of ob-gyn for a hysterectomy and he botched the surgery so badly that she spent the next 12 years in agonizing pain until she went to a new doctor. The new doctor spent 8 hours repairing the damage.
My mother recently passed away as well. I’m so sorry for your loss.
So very sorry my father passed at 90 and found out he had the disease on his 70's.
I'm so sorry. I keep getting eczema but feel it is this. I will pay out of pocket for a real dermatologist not a nurse.
It's funny how some people get the best of care and yet others have to struggle just to find mediocre care
Well he did travel and $$$ im sure. It sucks.
Exactly what should i do drain my funds going to quacks or just resign myself to the fact ill die in a few years
I've just been diagnosed with MF two days ago. I'm hopeful that I might be able to make an appointment with Dr. Kim if my insurance will cover that visit. As of now, I have no idea as to what stage my condition sits, but I know that this team is the best to help me with the best possible treatment.
Also I have diagnosed with MF 2years ago but I think that I hade it before maybe 14 years ago but doctors no knew or found it
Now I am 25 years old and I was treated with chemotherapy and radiation but it did not help, and I only follow up with a dermatologist with a treatment of 1/2 cm of methotrexate with two types of Starville Whitening cream and preferment cream morning and evening and folic acid.
I also do not know what stage I am Please if any treatment is doing well with you, tell me
@@aidakamel7094 ne durumdasınız tecrübelerinizi paylaşırmısınız?
@@aidakamel7094go to the radiation oncologist n get total skin electron beam therapy....or another option is ECP
@aidakamel how are you now?
How are you today?
i called her to make appointment with her but they refused seeing me because they didn't accept my insurance. Yet these guys are The Only One that have the solution.i have been to uci ucsd and ucla and no result. i'm only 30 years old with stage 3 or 4 and so hopless
Write your insurance and demand a hearing if this is your last result and your only option
Ne durumdasınız ?
rip im turning 30 in a few months and im in the same boat, theres no way i have the funds or the connections to the gate keepers of these treatments it is what it is
My Wife just passed away from this Shit....Rest in Power Venus Clegg...Word Up...💪🏋️...#MiltonMusic99 #GodEmcee
too bad people with little to no insurance will be unlikely to get this kind of treatment.
Enormous amount of human effort across decades was put into learning how to diagnose it and in developing a treatment plan. Therefore the treatment has the value it has. And those people should insure themselves. There is a reason it is called insurance again...
Aramis a free dog Insurance is a scam.
Arizona Skywatch You don't like it either way right? You whine that people without insurance don't get million dollar treatment for free, then this smart girl comes an says that insurance is a scam... Ummm that is contradictory
Might as well just kill myself
Wow dr can do so many great things let's get a cure for cancer and cancer these dieses should be like cough medicine now
ive seen 10 docs over this issue of the years it just slowly progresses but few doctors wana do anything itl probably take me in 10 years or so
pls someone help me how I can contact them
let me know when u have answer i have the same issues i was diagnosed this disease since 2012
Many thanks. Treatment for this condition is palliative, with steroids, chemotherapy and electron-beam therapy.
I'm being tested now for this as outbreaks rashes
I was treated with chemotherapy and radiation but it did not help, and I only follow up with a dermatologist with a treatment of 1/2 cm of methotrexate with two types of Starville Whitening cream and preferment cream morning and evening and folic aciI also do not know what stage I am . Please if any treatment is doing well with you or case you know or what healthy system diet , tell me
How can I contact this doctor
Could never sleep skin was like it was burning rash came doctor said it was exzma then psoriasis for 4 yrs made appointment with hospital they told me I had mf change my diet went gym rash is away I caught it early that was yrs ago
What diet you applied please for that ??
Because I will apply keto diet but I don’t know it will be good or no I am 25 years old and diabetic also ??
Cut out all sugar
2:03
My sister a christian has this condition and fighting with her faith in God. We take one day at a time believe God knows her very need. We trust God Abba Father
I have MF. I changed my diet to a whole food plant based diet. Minimal refined sugars and minimal refined flours. Read the China Study by Dr. Colin Campbell. Supp with Vit D (10-15,000 IUS daily) and take lots of liposomal Vit C. My rash hasn't progressed passed stage 1a since and I have never felt healthier. Sometimes the rash disappears completely. Every year I go to my dermatologist, he looks at my rash/tumours and says looks good see you next year. In and out in 45 seconds. We all have cancer cells coursing through our body every seconds of every day. If you keep your body basic, you don't feed the cancer cells and the tumours don't progress. No need for pharmaceutical poisons or brutal allopathic treatments IMO.
My mom had this disease but ended up dying of congestive heart failure. I read there is a familial connection so I'm slightly nervous. Veganism is my lifestyle from now on!
sporto100 Yours was only stage 1a. Stage 1a does not require cytotoxics or chemotherapy. So please don't pretend you know anything about treating it and badmouthing chemotherapy. The treatments save lives and people like you who spread misinformation that prevents people from receiving proper treatment are murderers. Shame on you.
sporto100 how stupid to say "don't feed cancer cells" as if the supply of nutrients each cell receives is different.
Completely agree with sporto100. Diet has anything to do with this condition and a whole food plant based diet is a good starting point. I would recommend something like the Gerson therapy (diet and coffee enema) if you have a severe situation. Also, do not put anything on your skin (drugs or moisturizers) except pure (distilled) water and hydrogen peroxide (for severe cases you might want to use 35% food grade hydrogen peroxide). Never use tap water or any cosmetics!!! Cancer (including Mycosis Fungoides) is curable and don't buy into the cancer industry and Big Pharma and medical establishment's rhetoric. They are all corrupt, to say the least, if not criminal! Chemotherapy and stem-cell transplants won't work in the long run because they all suppress your immune system and what makes you heal is not these "medical" interventions. EVERY doctor knows that but they won't tell you. What makes you heal and well is your own working immune system, which can ONLY by achieved by aligning yourself with nature, whether a whole food diet, exercise, sunshine, air, or stress-free, chemical-free environment.
proudblackjynx I 💯 agree with you. I’m plant based too, but I would be a fool to think a diet could cure cancer. I have stage 1b and have had it since I was 9 years old, now I’m 31. Light therapy has been working for me to clear my skin and put the cancer in remission. (Under my dermatologist care).
Bio resonance doctor royal rife a true genius. We have just treated this today nov 7th. Off a sandfly bite. Took 1 hour 30 minutes on the rayocomp ps 1000. Hulda clark and rife frequencies simple true logic everything lives on pulses
what do you mean?
@@alatsaf its simple like birds talk to eachother in there specific frequency/tones/or as we call it voice .so do all viruses bacteria etc they live as a family like us humans but within that family they have a different range of frequencies or language so a polish man would not understand a french man but he is still human very simple logic
@@honda4004 and by doing that treatment you healed the MF?
I have sezary syndrome.
how can I contact these people??? Yes if you don't have the right insurance they will let you die...what a fucked up system!!!I
musicmaniac5179 if you don't have money you cant buy food and you will die. Is that fucked up too? That nothing is free?
Bitter Apricot Kernels saved my friend from stage 3 to almost nothing so far in 3 months. Eat them like chewing tobacco 3 or 4 a day... that's all it takes!
Can you share more about your situation now?
@@alatsaf He is skin cancer free. But, he tells me he has to take the kernels or after a few months symptoms return. Doctors are baffled at his recovery. He was given no more that 6 months to live! He is still alive and kicking!
@@gwhat3922 fantastic.
Selam Ben MF hastasıyım acı kaysı çekirdeği .... kaysı çekirdeği mi?
@@dogaveyasam7541 yes the kernels are what is in the center of an apricot. The bitterness is the B17
And my name is Kim
Magyarul szeretnem!
Forditsak magyarra!