First, I want to say how grateful I am to have this community. I was hesitant at first to get involved, but realized quickly, that my fear or reluctance is not going to help anyone else who has found themselves in my situation or a similar one. So, I will share my story and hopefully it will be beneficial to me and to others. My story started back in 11/17. I had a small spot come up on right cheek and a tiny spot on my left elbow. The spot on my elbow was flesh colored, about the size of a pencil eraser, and was really only visible when I scratched or rubbed it. It itched a lot and often. The spot on my cheek was pinkish red and was about the size of the end of a chapstick. It itched as well, but not as often as my elbow. I thought both were probable bites that I had gotten when getting Christmas decorations out of storage. I have been bitten by a brown recluse before and was concerned, to say the least. I went to the general practitioner to be checked and they didn’t see any cause for concern and said to take a preventative antibiotic and use an OTC cortisone cream. That diagnosis didn’t sit well and I decided to go see a dermatologist. On 12/22/17 the dermatologist looked at my cheek and felt that I could safely use the cream for two weeks and then come back in if it had not gone away. The elbow was still insignificant at the time, other than the itching. I asked for my peace of mind that they do a biopsy on my cheek and they agreed. I went back to get the stitches out and my biopsy results were not back. They were doing further test with dyes to try and get a definitive diagnosis. On the morning of 1/8/18 I got the call and had to be at my dermatologist’s office within the hour. My diagnosis was CD4 positive T lymphoproliferative disorder with marked folliculotropism and the differential diagnosis was small/medium CD4+ T-cell cutaneous lymphoproliferative disorder with unusual degree of epithelial involvement and folliculotropic mycosis fungoides.  My dermatologist did her best to explain to me what they thought it might be, but could not give a clear diagnosis.  She had seen patients with mycosis fungoides and SĂ©zary syndrome, but mine did not look or present like either of those. It was unclear to all of us. They made me an appointment with the oncologist and I was in their office two days later. Within a week I had my initial blood flow cytometry report done and a PET/CT done. The scans came back great and no signs of lymph node involvement or cancer. The blood work had some ambiguity, but was attributed to normal cold/viral probability. There was a subset T-cells that expressed bright CD4 without significant co-expression of CD7, but overall the CD4+/CD7 favored reactive CD4+ memory T cells over T-cell neoplasia, (new, abnormal growth). Since then I have been back for more blood work and it closely resembles the first report. I went back and had a biopsy on my elbow, at my own insistence. It came back with another inconclusive/non-definitive diagnosis of minimal cutaneous involvement y clonal t-cell infiltrate, but findings were generally not diagnostic of lymphoma. Both my oncologist and dermatologist won’t commit to a diagnosis, saying it could go either way. It may never re-occur or could change in weeks, months, or even years.  I have been told to use the Triamcinolone Acetonide cream on both places, that are almost completely gone, other than the small scars. I am in my early 50’s and going through menopause. I do have hot flashes and night sweats, but they believe those are as a result of my hormones. I have made a follow-up appointment with my gynecologist to do labs. I am working on getting a second opinion, but finding a doctor with enough experience is proving tenuous.  I presently do not have a rash, patches, or plaques. I go back for follow-up testing in May, unless something new presents. I don’t have a lot of information to share or insight, but I thought if I share my journey from the beginning it may help someone else. I am praying that this journey stops here, but if not I will walk it out and share it with you here. That may be easier said than done, but I will certainly try my best to add as much of my experience to this discussion as I can. I am relying on my faith and Godly direction and wisdom. If I hadn’t had that Holy Ghost unction to go to another doctor, I am not sure where I would be. This has turned out to be a far cry from no big deal. Love and blessings from the U.S.Â
Hi and welcome to the Macmillan Online Community but we are always sorry to see new members. Can I also give an extra welcome from across the great pond from the Highlands of Scotland.
Thank you so much for sharing your story and I truly hope and pray that your condition does not develop any further than it has so far and the next few months can mark the end of this suspected Blood Cancer journey.
In 1999 my Non-Hodgkin's Lymphoma journey commenced. After 9 months of investigations into various skin issues by my very good GP then a further year of attending Dermatology with lots of blood tests, 7 biopsies and a few CTs. I was eventually diagnosed with CTCL (Mycosis Fungodes). I have a very experienced and nationally respected Dermatologist and he did have his suspicions about CTCL (MF) but it just took time to get the pathology spot on.
For 14 years the condition looked like I had very bad Psoriasis and I often had a 70% body coverage. My condition moved through all the stages up to 4a2. My Dermatologist told me “Mike there is no cure to this type of Blood Cancer and you are living with a time bomb that does not have a countdown clock and one day the bomb will go off and become life threatening” So I parked these thoughts and lived, worked and enjoyed life throughout these 14 years - it never held me back.
5 years back my condition did become life threatening so I went on to have some challenging and life changing treatments and the long and full story can be seen in my profile by hitting my forum name.
We also have a very supportive forum where people of Faith can support one another and share their Faith on their cancer journeys (link)
Please take care and keep us up to date with how you get on.
This is a great thread and the more information we gather the better for everyone in this rather exclusive T-Cell club.
CTCL in general will cause skin lesions. But although the skin is involved, the skin cells themselves are not cancerous, but rather the T -Cells that move from the blood in and through the skin tissue. It is VERY important to understand that folks can live normal lives for many years and CTCL can be seen and treated as a chronic health illness.
CTCL describes many different disorders with various symptoms, outcomes, and treatment considerations but Mycosis Fungoides (MF) is the most common type of CTCL with approximately 5 cases per one million persons across the the UK and United States. So obviously there is a lack of research and development :(
My amazing Dermatologists said in the very early days of my condition that 'MF could not be cut out' as this does not solve the problem as the cancer is not in the skin but in my blood hence new areas appearing anywhere on the body. Where the blood flows then it can show its face.
Over the first 14 years I had lots of treatments including various steroid creams, 20 weeks every year (2/3 times a week) for UVB then PUVA light treatments at my local hospital - I must have had 900+ visits to Dermatology for clinics and light treatments during that time. One time I did end up with 2nd degree burns on my bum as the PUVA machine did not switch off but the member of staff thankfully noticed so she switched it off. It was only 4/5 seconds but the damage was done.
As these 14 years progressed my condition progressed so I also had to use special padded dressings over all the tumorous areas as the tumours would bleed. I also had Interferon alfa (a) injected weekly subcutaneously under all my tumorous areas and various retinoid drugs including Acitretin and finally Bexarotene.
Bexarotene did a great job but my Cholesterol went up to 12.2 and my Thyroid was closing down so the Bexarotene was reduced and various other drugs were used to get these new issues under control but this allowed my main CTCL to get out of control.
So only then was External Beam Radiotherapy (link) used on my large tennis ball sized tumour on my head so I had 5 zaps and after a month it was gone but it did not solve my Blood Cancer.
- Radiotherapy uses high-energy rays to destroy cancer cells. This treatment is used to cure cancer or to relieve symptoms but it should not be used if other treatments can be used as the effects of Radiotherapy can have long-lasting health issues in the future.
had a few sessions of TSEBT (Total Skin Electron Beam Therapy) and it was effective but only for about a year. He has also had 3 sessions of Arthovoltage that has been very effective. Lets see if Ridgeway picks up on this thread.
My team did look at TSEBT for me but my condition had moved on so more drastic treatments were required.
Keep your questions coming.
Highlander ((hugs)) from a cold and Narnia looking Highlands.
