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Pulmonary Fibrosis
Sherri23
15 Posts

My dad was recently discharged from a 3 week stay at the hospital where he was diagnosed with advanced stage pulmonary fibrosis.

He started chemo once every three weeks in December 2021 and from Jan 2022 to March 2022 he also received 4 immunotherapy treatments (which were eventually stopped after his respirologist concluded that he may have pneumonitis which was believed to be caused by the immunotherapy). He did not receive any treatment for the suspected pneumonitis.

From March 2022 to June 2022 my dad continued to receive chemo every 3 weeks. He seemed to tolerate the side affects of chemo well.

But, towards the end of June my dad experienced a sudden increase in shortness of breath and an increased cough - which led to his 3 week hospital stay (During which he also caught Covid but fared well from it). At the hospital he was diagnosed with advanced stage Pulmonary Fibrosis which the doctors believe was also caused by the immunotherapy treatments he previously had underwent.

My dad is now home, is oxygen dependent and bed bound with very limited mobility. It is heartbreaking to see him like this, but he has a strong will and we are hoping (and praying) that he will be strong enough to carry on with his own activities one day. He is currently still taking Prednisone which is gradually being weaned. Chemo has been put on hold for now.

I am reaching out to inquire if anyone has gone through a similar diagnosis - Stage 4 lung cancer and pulmonary fibrosis, and if so if any treatment in particular helped? I absolutely understand that the Pulmonary Fibrosis has caused irreversible damage to his lungs but I am wondering if anyone has any recommendations with assisting with severe shortness of breath.

3 Replies
DMT
195 Posts

@Sherri23 My husband’s final year was on Oxygen 24/7. Gradually increasing the level of oxygen. I also live in BC, on Vancouver Island. He was put on Palliative Care at Home. It is a terrific program. He had lots of visits from home care nurses, respirologist etc. We never actually met the palliative care Dr as it was all done by phone. My husband had lung cancer and emphysema, different then your Dad, but the difficulty breathing was the same. What worked the best was Ativan for the shortness of breath. He would put one or two under his tongue and it would calm him down so that he could get some oxygen. As things progressed they added some tiny pills of hydromorphone. Sometimes all he needed was ½ a pill. We cut them up and he took little bits as needed.

Sherri23
15 Posts

@DMT Thank you very much for your reply. My dad was prescribed a small dose of hydromorphone and it seems to help. Ativan I will look into. Thank you again.

@Sherri23
So many questions and no answers for you.

Is anybody talking about it as symptoms of long Covid. The overlap of this with lung cancer is something that has all of us #LungCancer patients worried.

Do you have access to palliative care/ home care? Managing these sorts of larger picture items are their specialty - ie managing serious illness. They are not just the death squad swooping in at the end of life to ease the final transition but often have things that can make activity easier, for example, vastly improving quality of life.

You mention bedridden and though it sounds counter intuitive I have seen and heard some marvelous things happening with some movement. Whether it is exercise in bed or actually getting up and moving around (with appropriate safety measures) it can make a difference. You may need to engage with a physiotherapist or respirologist to learn how to do this.

Good luck as you sort your way through.

Angus

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