Ipf

He has IPF 

Hi Korea

My name is Keith and I’m one of the Cancer Information Nurse Specialist.

Welcome to the online community. I hope you find the support and information helpful.

This sounds like a really difficult time for you all right now.

In relation to your husband diagnosis of IPF I’m usure of the name of new drug you have mentioned in your post. I’m assuming we are talking about a diagnosis of Idiopathic pulmonary fibrosis and I’m unsure if he has any clinical cancer diagnosis in relation to this?

With any diagnosis and treatments, the effect of both vary from person to person as well as prognosis.

IPF can be a very aggressive disease regarding decline in respiratory problems and general health status.

But factors that may also affect life expectancy also include variables including progression rates, age, occurrence of acute exacerbations, and past and current health conditions.as well as how well he reacts to the new drug you are referring to.

For this reason, the best person to speak to regarding the question you are asking would be his treatment team/consultant, who would have a greater understanding of his situation and how he is affected by his IPF including an in-depth knowledge of his current and past medical history.  

On this platform it can be difficult to have a two-way conversation and to fully understand what you are going through and we hope we have answered your question.

If you’d like further explanation or have any other questions, please feel free to recontact us, either on this platform or give one of our cancer information nurses a call on our help line.

take care

Keith, Cancer Information Nurse Specialist

You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email.

Ref KM/DT

So he was diagnosed with pulmonary fibrosis and asked if he had worked with asbestosis which he had, but now after 2020 he had a lung function test in nov 2023 and a ct scan which the consultant has said he is now IPF as it has progressed rapidly he also has clubbed fingers and very short of breath but still managing to get around and do things. This drug will be given to him soon but they are worried it will affect his blood thinners edoxaban but thinks the risk is low. My question is why they are saying rapid when it has been 3 years since diagnosed. My husband also has had prostate cancer which is being managed after removal of prostate and also AF

Hi Korea,

Thanks for getting back in touch. My name is Gail, and I’m one of the Cancer Information Nurses on the Macmillan Support Line.

It’s understandable to have many questions at this time and it’s important to gain clarity and understanding. As the doctor asked if your husband has worked with asbestos, it may help to ask if they believe this could be a contributing factor to his diagnosis of IPF. Asthma and Lung UK have more information about Asbestos-related lung conditions.

It’s difficult to say with any certainty what your husband’s consultant meant by saying ‘rapid’. The consultant and his team will routinely compare your husbands previous and recent scans to gain a better understanding of how his condition is progressing and to determine when the best time is to start treatment.

Our information about questions to ask your healthcare team may help you have an in depth conversation with his consultant at your husband’s next appointment to gain a better understanding. Writing these questions down before the appointment can be helpful and you can also include asking them what they meant by the word ‘rapid’.

Your husband’s consultant may also liaise the Urology team regarding his Prostate Cancer and will take into consideration any other health conditions before starting treatment.

I hope this information is useful and your husband’s consultant can offer more clarity.

You may find it helps to talk to our nurses directly on our support line, but it may also help to know that Asthma and Lung UK have a helpline too.

The Macmillan Support Line offers practical, clinical, financial, and emotional support. You can call us free from landlines and from most mobile phone networks* on 0808 808 00 00, 7 days a week, 8am – 8pm.

Ref; amcg/kr