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 a very warm welcome to this rather exclusive group of people but always sorry to see folks finding us.
Now to your questions, please remember that we are not medical professionals and only have our cancer journeys to refer back on.
I will answer your questions as clearly as possible but remember that I have had two journeys before and after 2013 and this can all be seen in my profile by hitting Thehighlander and my recent blog. The main answers I will give you will relate to me living with CTCL (Mycosis fungoides) for over 14 years up until 2013 but not including my 6 year journey when treatments had to be Full On.
Well it depends by what you would class as hot and humid as in Scotland (UK) this will be rather different from some areas of the USA :) But basically yes, hot and humid weather can have an effect so wearing loose cotton cloths is very important and NO tight denim jeans as these will be like sandpaper on the skin. You need to let the air to circulate round your skin. Sweat will collect in the bodies crevices and may develop fungal infections.
But some sun is good for the skin but this has to be vert carefully monitored as one of the treatments for CTCL is UV treatments.
There are a number of types of specific bath emollients. In the UK I use Dermol 200 if I have a bath and always in the shower. Never use any scented products and your Dermatologist or Pharmacist will be able to advise on products you have in the USA I also use Dermol 500 hand wash.
When I was diagnosed back in 1999 the only thing I had was some skin issues that developed into what looked like bad Psoriasis and I often had a 70% body coverage and it was not until the fall of 2013 that a Lymph node reacted.
So my story is long and had a lot of twists and turns but I was on NO other medication other than what my Dermatologist had proscribed for me so I had lots of treatments over these 14 years including various steroid creams, 20 weeks every year (2/3 times a week) for UVB then PUVA light treatments - I must have had 900+ visits to Dermatology for clinics and light treatments. For these 14 years I had to ware special padded dressings over all the tumorous areas as the tumors would continually bleed. We went through a new set of bed sheets every night as they would get covered in blood. I also had Interferon alfa (a) injected weekly subcutaneously under all my tumorous areas and various 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…….. yes it was hard but all do-able.
Good questions - No fast food, but a good balanced home made diet with lots of fresh vegetables and yes I still eat meat but not a lot.
As this is manly limited to your skin an itch can develop anywhere and it could be seen as the bones but most likely the skin.
CTCL will make the skin very reactive to changing temperatures and I would find that my core body temperature would rise just a little so had to get some fresh air. At times I would have uncontrollable shivers, it was tempting to wrap up but in fact the opposite was the way to go and let the body just find its normal levels. Remember the skin is the largest organ in your body and has to pt up with everything that we put it through so no surprise that it does react.
Yes, as you could develop pressure points so you will find you don’t get a full nights sleep......... ints only in the last year, 18 years after my first diagnosis that I can sleep in one position all night.
The itch could develop any where and would not develop into any issue areas but it is very important not to scratch, hard to do, but if you develop an itch put some good Dermatologically approved cream on the area, I use Hydromol Cream.
Not from the CTCL but yes post main treatments, but remember my treatment journey was rather extreme
During the first 14 years I just had the normal stuff we all have like man flu ;) but I did get one infection in one of my tumorous broken skin areas but some antibiotics did the trick.
But lots of infections following all my treatment 3-5 years back - but that is in my story.
No
Not that I would say I noticed but yes after my main treatments.
Never
I will answer your last question with some of my own questions;)
If you have a clear CTCL diagnosis you do have full on Blood Cancer, there is not a ‘may’ in the equation and this could develop into a life threatening situation, but as you will have seen from my story this can take a long time and for others I know they never have togo the same journey as me.
I am always around to help out and answer questions.
...... I need a Single Malt after this ;)
Hi again, it is good to connect across the pond.
Over my many years living and working with CTCL I have been seen by and treated in a number of specialist cancer centres of excellence with regards to all areas of CTCL. But as you will understand due to the fact that we are 1 in about 250,000, so in the UK there are only about 250 of 'me' with the condition. So the collective information and research will not be as available in comparison with the main stream blood cancers.
Thinking outside of the box is all part of dealing and living with CTCL. At its basic, it is a skin condition so looking after our skin and the body and immune system that supports the skin is very important.
I have Allergy related Asthma and along with this comes the skin reactions. It is known that a high percentage of folks with CTCL are asthmatic in some way.
I worked in the Construction Industry, then Oil and Gas Service Industry and it was important to view every situation, material and substance that I was coming in contact with as this all had a knock on effect. I then worked in Education for over 20 years and the demands and stress of this job had a lot of negative effects on my condition to the point I took early retirement.
Keep your research going and I do hope that your condition does remain stable and you don't have to go on to have to be faced with more aggressive treatments. If you have had a look at my story I should not now be around sitting in the Highlands of Scotland. But I am and for the last few years my skin has been perfect - long may this continue.
Always around to listen and help out.
Hi again ........ and the search for answers continues.
Lets see if livingbyfaith is still looking into the Community as this was about a year ago - I also am interested as to how things have went.
My wife had lichen planopilaris for most of the early part of this year - Dermatologist spotted it straight away, no biopsy required and it has now all gone. He said that it was mostly likely triggered by stress and yes we have had some stressful times with my wife now departed mum.
Lets get you some answers ((hugs))
Do not apologise- this is a good place to unpack these issues.
Dermatology is a very confusing area as the slim is one of the most complicated organs in the body.
Keep working with your team to get answers xx
Sorry for not getting back to you but just finished a 2 hour drive.
Yes to itching skin but as I had MF I understood the importance of not itching but putting on moisture when the urge to itch started - eventually she did not itch.
No hair loss or eye brow loss...... ((hugs))
