Shortness of breath

[Alnmouth]

I have MBC to the left lung. Was diagnosed in June. Am on letrezole and Ibrance and feel much better but am still quite SOB on exertion, Does anyone have the same as me and does the SOB ever get better

[rubyc1234]

I was diagnosed with MBC to both lungs in the spring this year. I was so short of breath I could hardly get out of bed and I had a lot of pain in both lungs. It took 3 months to get it all diagnosed with scans and lung biopsy and I got worse during that time. Started oral chemo on May 31st and it is gradually getting better. I can now do most things around the house and I am driving and cooking again. Very comfortable sitting in chair and can visit with friends easily. Only recently after 3 and a half months can I comfortably walk around the mall and not get overly short of breath. My sense is that it can take several months to get better. I do not think my doctor ever stipulated how long it would take but she said it would get better and better. I went to the fall fair on Friday evening and was comfortable. Two months ago I could not have done that.

[Alnmouth in reply to rubyc1234]

Thanks for your reply. I find some days are better than others,and that the heat and humidity of Florida does make it worse. Reading your reply made me remember how bad the sob was when I got out of hospital. I had a large pleural effusion, which resolved and my breathing has slowly improved over the last three months. I also have no pain now.I also am doing things again that I wasn't able to. They had to start me on me game cos I had no appetite at all and was nauseated, all of that has resolved

[rubyc1234 in reply to Alnmouth]

You are so similar to myself in every way. I had no pleural effusion but both lungs were involved. Weekly I feel better and so thankful to be walking again to events. The hot and humid summer was very hard on me too, so spent the summer indoors. I believe it just takes several months to get back and we need to be patient. I have had good and bad days but lately more good than bad. Thankfully the pain is residing. I have not yet been on oral chemo for 4 months.

[Clair19 in reply to Alnmouth]

Where are you in Fla?

[Alnmouth in reply to Clair19]

I live in Lakeland d

[Clair19 in reply to Alnmouth]

I lived in Winter Haven when I first got married. I loved it, but I was 21 and from Pensacola, so I like the heat . My best friends still live there he works for Publix over 30 years.

[Clair19 in reply to Clair19]

We lived rt down from Cypress Gardens, I think it closed a long time ago.

[Alnmouth in reply to Clair19]

Yes it is now Lego Land. I have a little vacation place just a few miles from Pensacola I love it up there. Where do you live now ?

[Clair19 in reply to Alnmouth]

Sorry for just getting back we took a mini vacation and I don’t use my phone unless I must. I live near Atlanta just south about 30 miles in Griffin. I moved here from Holiday Fla in 83 with my first husband. I’m a Navy brat and have been all over. Griffin is where they do filming on The Walking Dead which we are big fans. We lived off Michigan Avenue, that was a life time ago. My Mom died in 90 and my Dad 92. To hard on me to go back. They where building a beautiful home and found out they both had cancer and had to sell, my mom gave up after that. Sorry for the rambling. I Love Pensacola and miss the good times we had. Thanks Clair

[Clair19 in reply to Alnmouth]

I’m scared to say this but I never had pain...Knocking on wood! Where is pain and how bad? I was diagnosed last summer after 17 years free.

[rubyc1234]

Do you have Ventolin as I find it helps when I get short of breath. Every morning when getting out of the shower I get tight and short of breath. I take it and it helps. I find that weekly I get better and better with no pain at all in the left lung now and only occasional tightness in the right lung. But it has taken this long and still I cannot walk for huge long periods of time. However, better all the time.

[Alnmouth in reply to rubyc1234]

Thanks for your reply. No I don't have ventolin and if I don't continue to slowly improve I will ask for it.

[PJBinMI]

My face to face friend with mets who lived the longest, 13 years, had lung mets only and did really well for about 12 of those 13 years. She worked in her family's insurance business, baby sat her tiny grandson, sailed, entertained and lived a pretty normal life. Something I learned from her about lung mets is that where in the lungs the mets are determines alot about how they impact day to day life. Hers were at the bottom parts of her lungs and so she had little shortness of breath.

I have no idea if this is at all relevant to lung mets, but I have asthma and a condition called interstitial lung disease, and the pulmonologist I see prescribed a couple of inhalers (albuterol and Breo) and also suggested that pulmonary rehab might help. Adding Breo to the I was prescribed first made a big difference for me, and the pulmonary rehab did, too. I have had hay fever type allergies my whole life and had been told once when I was in my 30s that I had asthma, but that seemed to go away until the last year or so. My breathing has not been as difficult as your describe, but the humid weather this year has made it hard for me to be outside (sadly). Before I got the inhalers, I would get out of breath leaning over to tie my shoes and it would take 5-10 minutes for me to start normal breathing again.

I hope you will do well! Some of us respond really well to hormonal meds like you are on, for years. I got almost five years from Letrozole. And then over 9 from Faslodex. The bc specialist onc I saw for my second opinion told me that when an AI, like Letrozole, works, it often works for "years, not months!" That was very encouraging and became very true for me! I hope it will prove true for you, too. And that you see some improvement in your breathing soon.

[Alnmouth in reply to PJBinMI]

Thank you. Mine are at the base of my lung, I do feel I am slowly improving

[PJBinMI in reply to Alnmouth]

The improvement is very good news and suggests that treatment is working! Alot of the time it takes awhile to really see improvement in how we are feeling and feeling improvement within 3 months is very good news. I hope you continue to feel improvement.

[Clair19]

Mine is in my left lung middle lobe. My plural effusion cleared up while on Faslodex. Did you know certain areas of spine mets can cause breathing problems. I have C2 involvement and I don’t think that helps. My middle lobe is paritial collapose, so my breathing exercise helps but wish I had total breath. Good and bad days, if I think about it when I’m doing something it makes it worse. I hope you get feeling better, I feel as long as something is wrong with my lung I will always have problems. I mostly have problems with short quick actions. I use to get SOB while talking in the beginning. The chemo brought my index down but Faslodex has cleared up effusion. Hope you continue to improve.

[blms]

Call me crazy, but my left lower lung mets are improved by learning how to breathe properly. When I feel discomfort, I start concentrating on my deep breathing and it improves. Look on youtube for breathing and cancer ted talks, etc, It is NOT easy to learn this and it feels unnatural but try making it part of a daily routine and see, You may be surprised. I no longer take any lung/ asthma inhalers, etc. With that said, I love singular at night before bed, It is very good for lung issues and helps with sleep.

[Alnmouth in reply to blms]

Thank you I will try

[MissyAnn68]

Hi

I have been MBC with met to lung and T9 spine since 2013. Lesions are NEAD this year again. I still have shortness of breath. This year has been the worst. I take letrozole and verzenio. I see a new pulmonologist Thursday. Hoping for relief.

Missy

[Juliandrea in reply to MissyAnn68]

Hi Missyann, have you been on that combo from the beginning? Congrats on the great news of NED!!!!! Hope we all get there . Praying you get relief with your breathing.

[rubyc1234]

It sounds like every situation is different depending on so many factors. I see many long term survivors and that is so encouraging. I know that weekly my shortness of breath is getting better and my oncologist says she is returning me to a high quality of life. She certainly said that it would keep improving. 3 months is still early.

[Klamato]

Yes, I'm on the same regime, and have shortness of breath. I saw mu doc today and I am have a CAT scan tomorrow to rule out a blood clot. She doesn't think so, but I need to check my liver lesions at the same time. I've been taking Ibrance and Fluexatine injections for 3 month, but PET scan didn't show any improvement. After the CT to evaluate the stability or growth of the liver lesions, she may have to change me to regular chemo, if the liver lesions are bigger. This is a real bummer right now, but whatever I need to do to live, I want it! I wish to stay on Ibrance but if my tumors aren't responding then I have to go with it! Has this happened to anyone out there? Kathy

[Lizannern]

I am on Ibrance/Letrosole. Breast cancer returned after 12 years remission. Only on Ibrance 1 month and started feeling SOB and dyspnea on exertion. Just casually mentioned in to the oncologist and she immediately did a CT Scan Angio and it showed

pulmonary emboli in both lungs. I am now on Fragmin injections for a week and then

hopefully a pill (Coumadin or Eliquis) for 6 months.

[Lizannern]

I was diagnosed in August, 2018 after 12 years in remission. Started on Ibrance/letrozole and then stopped after one course of Ibrance because my ANC (neutrophils) were too low.

After two weeks still too low but also was SOB and dyspnea on exertion. Doctor had me

get a CT Scan Angio and it showed bilateral pulomonary emboli. Now on Fragmin (like Heparin) and hopefully will start back on the Ibrance next week (lower dosage). Has anyone else experienced PE?