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Hodgkin's lymphoma questions

Introuble197700064d
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I was diagnosed with Hodgkin's lymphoma and congestive heart failure about 2 years ago and I was doing chemo treatment but they stopped because of my heart but I this disease swells lymph nodes and in certain cases they can connect to each other and form something like a rope my thing is I have these we just call them ropes if ok but I can actually move them away from areas to a different location in my body feels like just under my skin sometimes move really easy and others seems like might be super glued they are on my face my head across my nose and neck seems like try to attach there selves to places like my mouth my nose my eyes but they are pretty much all over my body now and if they swell up I sometimes have trouble breathing feel like I'm being squeezed from inside it's actually really scary at times is this normal for hogkins please help 

  • Dear  ,
           

    Welcome to our Online Community, I hope you are finding it a safe and supportive place. I see that you are using our Hodgkins Lymphoma and Cancer Chat forums. My name is Fiona and I’m one of the Cancer Information Nurse Specialists here on the Macmillan Support Line.  I’m sorry to read that you have Hodgkins Lymphoma and also have congestive cardiac failure (CCF). 

    I notice that you are contacting us from the United States of America (USA). As a UK charity, it is difficult for us to reply in detail to questions about people with cancer who live outside the United Kingdom. This is because there are differences in health services and care in other countries, however I can give you some general advice and signpost you to organisations in the USA that you might find helpful. 

    Firstly, we recommend to everyone if you have a new symptom, a symptom that persists, gets worse or is changing then you must report this to your healthcare team or attend your nearest emergency department.  

    You are probably already aware that Hodgkins Lymphoma is a cancer of the lymphatic system. When abnormal cells clump together within a lymph node they cause swelling, which is when many people go to see their doctor, leading to a diagnosis. It is very unusual for people to report the kind of sensations and symptoms that you describe and we would highly recommend that you discuss these with your healthcare provider or attend your nearest emergency department. The most common kinds of symptoms are described here. Breathlessness may be linked to your CCF and it might be helped by a review of your medication. 

    There are lymphoma-dedicated organisations that you might want look at that provide you with information and support in the USA. The Lymphoma Research Foundation offers information, advice and guidance as well as community support; the Beat Hodgkins Foundation offer a link to Blood Cancer United, who provide information and guidance about financial assistance that you might be entitled to so that you are able to access the care that you need. They also have information about how to contact an Information Specialist who can support and advise. 

    I hope this information helps to guide you. 

    Best wishes, 

    Fiona S 

    Cancer Information Nurse Specialist  

    Ref: FS/HK

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