Log in
Leukaemia CARE
623 members296 posts

Desperate for Answers

My husband is 54 years old and was diagnosed with CLL in 2010...... he was treated for Rosacea for 2 years prior to being diagnosed with CLL ......

The rash changes from resembling Rosacea to resembling Lupus....... when the CLL diagnosis was made the plan was to watch and wait because he was extremely healthy except for some swollen lymph nodes and the rash...... the rash got better but never went completely away.... a year passed and due to chronic infections he had 4 treatments of Rituxan and treanda (not sure if spelled correctly) for about a year he was relatively healthy but lymph nodes got out of control and Drs decided to do 30 treatments of Radiation...... almost killed him.... he lost 40lbs

The Radiation was on his neck and also tonsils...... so his tastebuds, teeth, smell, all was affected.......

To make a 10 year story short...... he has a debilitating skin issue..... has been this way for 10 years but has taken on an entirely new look as of late.....

He has had biopsy’s sent all over the US and the have come back with everything from a big bite to a rare form of lymphoma...... that only 5 people had ever been diagnosed with......

The rash is mainly on his head face neck ..... huge raised modules that ooze and drip clear liquid.....

Not a place on his head face neck that you can touch that is not affected.......

We own a poultry farm and that is how we make our living...... so all the bacteria he is around on a daily basis has cause severe infections......

He has gone to new Hospital and Dr this week ......

They are puzzled but searching for an answer......

My question is do any of you have the rash so severe.....

Open wounds...... oozing and dripping ...... swollen eyes and face ...... and the unbearable itching....

We are desperate to find some relief for him.....

if anyone has any suggestions please share!!

2 Replies
oldestnewest

Hi, I am in the UK, I am gathering you both live in the US, but this is not something I have ever had, it sounds absolutely horrible and debilitating to live with and as you say your husband's occupation cannot help. It cannot be easy for either of you. I feel helpless because the only organisations I might refer you to like Leukaemia Care, are based in the UK, however their details are Email: support@leukaemiacare.org.uk. I think you are doing the best you can by searching on the internet, unless others can help more. Take lots of care of yourselves in the US and thanks so much for posting.

2 likes
Reply

cll2010 thank you for posting and sharing your husbands awful predicament. In ten years i have not heard anything shared by other CLL patients on-line about skin lesions as debilitating, There are many potential skin issues that can be associated with CLL or aggravated by the condition or treatment , unfortunately as 2003UK mentions we are based in the UK and may not be able to signpost you to appropriate resources. May I suggest you post to healthunlocked.com/cllsupport a very international CLL community with over over 11,000 members over half of are in the US. There is a lot of US knowledge and CLL experience among members that may be able to share helpful suggestions.

Nick

Reply

You may also like...