Interstitial Lung Disease

I am new here for the past few months I have been suffering with shortness of breath on exertion that has been getting slightly worse.

I do have Ovarian Cancer and have had three lines of chemotherapy. I am on a clinical trial for a drug called trametinib and one of the side effects is that it can cause heart and lung damage. I do have regular CT scans of my chest, abdo and pelvis and there has been no lung damage reported in these scans. I do have a small pleural effusion on my right lung and since being on the trial I have developed a left pleural effusion. I have regular chest x-rays and these pleural effusions have remained stable so my oncologist does not think they are resonsible for my breathlessness.

This last month my ribs have been achy especially during exercise and there have been some sublte changes to my hear output on my echocardiogram. I have had a couple of lung function tests that showed some 'stiffness' but that I was able to transfer oxgen from my lungs to my blood. My oncologist could not really explain what lung stiffness means but then he is a gynaecologist. They have agreed to refer me to a respiratory specialist and they think its a number of things all contributing to my shortness of breath. I have also been suffering with a lot of mucous at the back of my throat and I get crackling when I lie down and I regularly wake up gasping for air.

I am worried that it could be something like pulmonary fibrosis but I am assuming that would have shown up on my scans? I suppose I would like some advice on how to get the most out of my appointment with the specialist.

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Hi Sorry to read about your issues .. I think you have stuff well covered if you ask lung doctor stuff talked abiut here.

Am no expert or out and if that was my DOC talking to me

I would think pleural effusion is causing breathlessness and changes on echo heart thing.

I would want to see lung doc ASP really.

Am under going test for excess mucus production round my throat TOO and thats yet to be resolved usually its infection excess mucus fluid production and or inflammation.

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That does sound very miserable. I am so sorry. No good telling you not to worry. So allow yourself some worry time, then try and put it to one side and think of the good things. The trouble with having so many things going on (co-morbidities in doctor-speak!) is that it is difficult for the doctors to get the whole picture. I always go to consultations with a list, and I try to go with a clear-ish idea of what I want to come away with. Not always achieved. Push politely, and if you are not satisfied then say so.

All the best and tell us how it goes.

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Thank you that is very good advice

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:Hi Scardycat :Have you ever thought about maybe Fluid retention could be the culprit for your breathing problems. I am on Chemo but had to temporarily stop taking them due to fluid retention. Have been but on mega dose of Flurosemide 80mg in morning and 40mg in afternoon. It has certainly had the desired effect (I can see and feel my ankle bones now). Going to restart a lower dose Chemo on Tuesday. Just a thought Flurosemide may help.

Regards Gordyboy

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Thank you for your reply and it certainly could be a potential issue but other than pleural effusions there is no other evidence of fluid retention

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No wonder you are a scardycat with that list of miserable symptoms, diagnosis and treatments, all of which could in my opinion contribute to your breathlessness. Obviously your case is complex and none of us on this forum are qualified to give you an answer to your question, however, through our experiences, we are qualified to support you and understand what breathlessness feels like and how scary it can be.

It seems you are on the right diagnostic path, a respiratory specialist will have you sorted in no time as you display many interesting respiratory related findings for him/her to get their teeth into. Unfortunately for you, it means trailling here and there, yet another doctor to see and probably more medication to take. However, I look forward to hearing that you are being treated and feeling better.

Your journey is winding, many twists and turns and hills to climb however, we are with you on this path and there is always someone around in the middle of the night to support you if you get breathless or just feel scared. Don't look back, keep pushing forward, you are doing a great job.

Please let us know how you get on with the respiratory consultant.

Take care

M

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Thank you sometimes in consultant appointments I can get a bit overwhelmed and come away feeling I wish I had said that or I wish I had asked that. Sometimes with some consultants it can be hard to get your point across and you can come away feeling dismissed.

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I think that a list of your worries is well worth taking into the appointments. It may help propping yourself up with more pillows to help the breathing while asleep. Some time waking gasping can be sleep apnea but with the excess mucus that is going to give the same affect. I have restrictive lung disease as well as Pulmonary hypertension and a few other things to threw in so I am also under different specialist to deal with they do not have a specialist now that will fix all I am afraid.

My son had lung issues when he went though Chemo so I do think this is a common thing.

I wish you all the very best with your treatment.

Be Well

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Thank you I do sleep on a special wedge pillow and it is better than lying flat but sometimes I do not sleep very well. I appreciate the opportunity just to be able to talk over my breathing concerns with a specialist. My GP has also referred me to ENT as well

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Always ask to be cc'd into letters to GP as well.

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I have recently as that has not been happening

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Hello honey

I'm foxy79 I welcome you and after reading your post your a fighter true soilder it's definitely respiratory lungs get advice from respiratory section I have it I know the symptoms your saying on go through it everyday. I hope everything works out for you 👍 and you get peace and comfort take care

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Thank you I also suffer with acid reflux and take omephrazole daily and sometimes wonder if that can be the common denominator. However it's all speculation but thank you for your kind words of encouragement

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Hello

Are you takeing perdiesoline steroids for that you get acid burbs in stomach I feel how much battle your doing on day to day life I'm 36 years old I suffer from copd stage 3 astma emphysema broncechtisis respiratory type 2 I'm on nublizer oxygen and bibep machine and other meds it's been going on form 2015 I need lung transplant. If I'm fed up wonder what you do please fell free if want to talk or need advice or want any information I'll be happy to help in any way take care

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I am not on any medication for my breathing

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