A bit bizarre : I have lung mets as... - SHARE Metastatic ...

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A bit bizarre

Kiera49 profile image
24 Replies

I have lung mets as well as in the bone, I can cycle or walk without getting breathless or any trouble with breathing, but when I read a long sentence of words out loud I really struggle. Does anyone else get this

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Kiera49 profile image
Kiera49
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24 Replies

Hi Kiera49: I don’t have that experience. I encourage you to ask your oncologist about it. ❤️🙏❤️

MacroMom profile image
MacroMom

Have you tried noticing how you are breathing while you read? I ask because I've felt this sometimes when reading to grandkids, then realized I wasn't taking a breath until the end of the sentence, especially if it's an exciting one! You might try taking a slow deep breath before starting to read out loud, then try to purposely take a breath mid-sentence. I was never in a choir or had any kind of voice training. Wondering if those who did have any suggestions? Glad you can cycle and walk easily!

Iwasborntodothis profile image
Iwasborntodothis

Sorry to hear this.

The first few months after my diagnosis were tough with lung mets. I had panic attacks about breathing and couldn't exercise without wheezing. My doctor prescribed an inhaler for me and it really helps if I use it before vigorous exercise. I have also been wearing a heart rate monitor so see at what heart rate I trigger. The Ibrance has been kicking those mets to the curb so I have better lung capacity in general after nine months.

Kiera49 profile image
Kiera49 in reply to Iwasborntodothis

I have no problem with exercise feel ok oxygen level and heart rate stay good, dont get tired

Iwasborntodothis profile image
Iwasborntodothis in reply to Kiera49

Sorry that is mystifying

Geulah profile image
Geulah in reply to Iwasborntodothis

May you be blessed with a long successful ride with Ibrance!

Hi Keira49 -

I'm sorry you're having this issue!

Even though I have no medical background (and failed high school biology) that won't stop me from coming up with an idea/theory...so take it with less than a grain of salt...

...but, is it possible that your mets are near the top of your lungs and so the shallow breathing of something like reading is more of an issue than the deeper breathing of exercise?

grain. of. salt. :)

Kiera49 profile image
Kiera49 in reply to

You could be right there with your grain of salt will discuss with onc, thank you p

8576 profile image
8576

Interesting, I don't have any medical background either, b,t had somewhat the same idea as Lynn. Though, I was thinking because you are sitting and maybe your chair compromises your lungs. I know when I sit down in my old favourite chair I sink in and don't sit as straight

and my chest is compromised.

Just a thought with a grain of salt,

Cheers, June S.

Staysha profile image
Staysha

I have lungs Mets too. I don’t have breathing issues either. However I don’t guess I’ve tried to read aloud lately. Does it happen when you sing? I love singing in the car when no one is around. I don’t get winded but I’m a terrible singer. Haha

PJBinMI profile image
PJBinMI in reply to Staysha

I'm a terrible singer, too, and also sing in the car. I make up loud songs and try to find things about this crazy life with cancer to poke humor at. Being able to laugh often helps my mood.

Staysha profile image
Staysha in reply to PJBinMI

Me too!

Kiera49 profile image
Kiera49 in reply to Staysha

It seems to be ok when singing as it's not that long till you get a break unlike reading some things in church service which are quite long

Phillipians4and6 profile image
Phillipians4and6

Hi, I have pleura and lung Mets. I have that problem when reading out loud. I just read an article to my husband and had to take a deep breath when I finished. Like someone said earlier I think it because we’re not breathing properly when reading. When I was first diagnosed it also happened when I got excited and talked with excitement to my staff. It has gotten better.

MyMiracle13 profile image
MyMiracle13

Hi. I don’t get breathless when I walk or read or talk but I do get breathless when I climb stairs even if it’s just 2 flights or when I climb uphill. Strange,

PJBinMI profile image
PJBinMI

Has anyone with lung mets had their onc suggest pulmonary rehab? It's like physical rehab but aimed at breathing and the lungs. I don't have lung mets but I have damage to my lungs from Ibrance (a supposedly rare side effect) and I was referred to pulmonary rehab. It was alot of fun besides helping my breathing. I lost over ten pounds, too, which for me was a real plus! And I met a bunch of really nice people whose lungs were in much worse shape than mine, some waiting for a lung transplant and alot with severe COPD. About reading out loud, I wonder if there is anything on line somewhere about how and when to breathe while reading?

Kiera49 profile image
Kiera49 in reply to PJBinMI

I went to breathing course at hospice, didnt really find it that helpful as I was on oxygen all the time then and it was aimed more to recover when your really brethless

hurricaneheather profile image
hurricaneheather

pleural effusion. mets to the R pluera dx July 2015. as a former professor (of education), all the "speaking" was exhausting the body. being an avid yogi aided with appropriate breathing, which is utilized, even more now, when engaging in "speaking" activities. love to read aloud to children, and need to conscientiously think about breathe, for the animation to occur with ease.

PJBinMI profile image
PJBinMI

The pulmonary rehab I went to sounds alot different than a hospice program, or a least I must admit the hospice program in my head! Some were on oxygen, even when exercising, others not at all and others when they came in but not during exercise. There were alot of treadmills and recumbent steppers and bikes, plus floor space for other exercises. There was always a doctor there plus several nurses and except for the doctor, who spent alot of her time in her office, but was there for emergencies and did mingle with us jsome. The nurses were mostly young, friendly and very very helpful. I went twice a week (had to drive a bit over an hour each way to get there) at the same time, so got to know several of the other patients. Best of all, my breathing did improve!

Cynzona profile image
Cynzona

Yes.

viennagirl profile image
viennagirl

Hello Kiera49.

I have cancer in my bones and I have two nodules in my lungs but I don't know if they are cancerous. I don't know if the doctor even knows because she says they have never changed size. I also have some mets in my lymph glands but none of these things interfere with breathing. However, when I eat I often start coughing I don't know what is causing that. That might be because I am irritating the lymph nodes in my chest. That lymph is lying internally somewhere between my breasts. I should ask my Oncologist and I think you should also mention your breathing problem to your Onc. All these things could be related to the cancer but I wonder sometimes if the doctors totally understand how the tumors act in the body. They know they are there but they might not know how they behave. All our bodies are so complex. I am happy to hear that you go for walks and cycle. I think that is very heartening and hopefully you can still do that many years from now. Stay safe. Hugs Marlene.

Kiera49 profile image
Kiera49

I think you could be right, I think your right there as everyone is different and drugs are trial and error, my onc seems to be very knowledgable but her registrar doesnt know that much apart from what's on the screen, onc is only expecting ibrance to be effective for two years, but hoping it will be ok. Will mention things to my onc, sometimes I think what drug to blame for symptoms lol. All the best to you. Tracey x

13plus profile image
13plus

Kiera in my humble non-scientific opinion I think it’s got more to do with how you are breathing while reading . Like some people run out of breath while singing- it’s the habit of how you’re doing it. Does it happen when you talk? Can you talk fine while you ride your bike moderately? If no I believe you’re fine.

PT’s are trained in respiratory rehab (as a PT colleague of mine pointed out in a FB post yesterday) . Perhaps you could call one and ask them their thoughts.

Kiera49 profile image
Kiera49

Yes can talk ok and can talk while cycling and I'm fine

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