MF and lungs involvement

Hi again BWAC it sounds like your husband’s Dermatologist is showing due diligence so this is encouraging.

Yes MF can ‘go in’ and spread to any area of the body but it normally takes time…… but remember that low grade NHLs like MF can transform into other types of NHL….. some more aggressive.

This happened to me in late 2013 (14 years into my journey) when signs of Cutaneous T-Cell Lymphoma was found…… but I am still here 11 years on doing good.

Over my first 14 years I had regular X-rays as I was often having chest infections but nothing was initially found….. but having a lymphoma diagnosis means that the immune system is fighting on 2 fronts…… the main fight is keeping the Lymphoma under control but this then opens the second front where a back door is open for infections and other health conditions from developing.

But I was also having yearly CT scans with contrast and although nothing MF related was found…… back in 2012 I was told that I had Asbestosis…… but all these years on it has not progressed but has reduced my lung function by about 15-29%

Kets see what the X-ray says ((hugs))

Hi again Mike. Thank you so very much for a quick response. 

I am actually glad he’s getting checked all over as he’s the type of person who never goes to the doctors. He had 8 different blood tests this morning and the X Ray of his chest and lungs. 

It makes absolute sense what you are saying but I must admit panic sets in a few times a day as this is so difficult to understand. 

My husband is actually quite healthy. He’s 42 and apart from the annoying cough he’s had for a year or so I can’t remember the last time he got sick…

His only symptom is the marks on his left leg which have become a bit darker during winter. Last summer they almost disappeared….they are not itchy at all and he sometimes even forget he has them on his leg….

I understand it can be a long journey to get a clear diagnosis but I do appreciate all your help, words of wisdom and support. 

Thank you so much and will keep you posted as we get back the results. 

B 

MF areas open to sunlight (although controlled with factor 50) during the summer will knock them back…… controlled/supervised UV treatment is often used in the early days of MF.

You will both learn to ‘live’ with the MF and be able to differentiate what is normal stuff that happens to everyone and things that are Lymphoma related.

I was 44 when I was officially diagnosed but had been living with the MF for a number of years not knowing what it was…… but it did not stop me getting on with life working in a demanding teaching job.

Thank you! I think your story is amazing! 

I do believe it’s all about accepting your new reality and adapting to your new life with MF but like you say, life goes on and you need to carry on with your life.

Dermathologist said he will probably only start with creams at this point so we will try to remain positive.

Thank you again and I also hope you are doing well?

B  

Oh the only option is to be positive….. if you read through your first post on the community I have given you some great examples of how life can indeed go on while living with MF.

When I was first diagnosed I have/had friends who were diagnosed at the same time as me with their type of chronic health condition or cancer.

The ones with cancer are no lo get with us now……. This consolidated in my mind that although I had a cancer diagnosis, Lymphoma is very treatable type of cancer.

Those with chronic health conditions like my friend with type  2 diabetes is now drug reliant for life and wares a monitor to tell him he needs to eat or take his meds…… or the 3 friend's with Parkinson's, MS and Alzheimers - all U see is them progressively deteriorating with no hope…… but although I had some bumps in the road I am living a great life all these years later…… it is all about prospective.

One of the many lessons I have learned over my 24 years living with my MF is encapsulated in this thought….

The road we navigate on our journey has two directions to follow. There are two signs along this road one sign is pointing to Pessimism, a mindset that always sees the worst will happen, not appreciating that the many treatments available can do the job, where stress and worry controls every aspect of life and as a result the journey is made extremely hard and draining.

The other sign points to Optimism, a mindset that is full of hopefulness, determination, confidence about the future and appreciates that the treatments available can turn the Lymphoma tide….. even in the most challenging storms. It’s important to continually seek to choose the optimistic direction as this simple thing can define how you walk out the cancer journey.

I know the sign I aleats select ((hugs))

Thank you so much. I really appreciate your words.