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Candi

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Good Morning Everyone,

Something is curious to me and I wondered if anyone else had experienced it. I wake numerous times each night and have noticed that after about 3 a.m., I wake and feel none of my lung cancer symptoms. I can breathe deeply and completely, no cough or heaviness in my chest and the neuropathy is completely absent in my hands and feet, no tingling, cold or numbness, I feel completely normal.

when I do finally wake later for the day, I still experience all of this but each thing I described quickly begins to change and in a very short amount of time my breathing is back to being slightly labored, I cough, tightness returns to my chest as does the neuropathy in my hands and feet. Any knowledge or guesses why these symptoms come and go? I appreciate your input....have a blessed day!! :)

Candi

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1 hour ago, Candi said:

Good Morning Everyone,

Something is curious to me and I wondered if anyone else had experienced it. I wake numerous times each night and have noticed that after about 3 a.m., I wake and feel none of my lung cancer symptoms. I can breathe deeply and completely, no cough or heaviness in my chest and the neuropathy is completely absent in my hands and feet, no tingling, cold or numbness, I feel completely normal.

when I do finally wake later for the day, I still experience all of this but each thing I described quickly begins to change and in a very short amount of time my breathing is back to being slightly labored, I cough, tightness returns to my chest as does the neuropathy in my hands and feet. Any knowledge or guesses why these symptoms come and go? I appreciate your input....have a blessed day!! :)

Candi

Candi I don’t have exactly what you  describe but I am able to roll over and sleep on my sore side with no pain. I cannot do this when napping or going to sleep. 

As for breathing, one day I feel like I could walk miles and others I’m out of breath going from one room to the other. 

Take Care

Paula

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Something similar happened to me as well between 5am and 8am, the coughing spasms stopped and I could sleep for a solid three hours.  I’m not sure why either.  Maybe it’s a period of deep relaxation?   

I’m going to try meditation to see how that works as soon as this creeping crud I’ve had since Monday passes.  

Maybe meditation is worth a shot?

 

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Thank you both for taking the time to reply. Paula you didn’t mention a deep relaxation but Rowers reply makes me wonder if this may have something to do with it? It is such a wonderful feeling to be free of the restrictions of cancer for a moment. I too have good breathing days and bad although I have pneumonitis, scarring of the lungs, so even on my good breathing days I’m unable to stand and walk, I’m dependent on my electric scooter. Rowers, I agree that meditation and relaxation may be worth looking into?! Please let me know if you do and what you find the results to be, I’m very interested!! God bless you both!!

Candi

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2 minutes ago, Candi said:

Thank you both for taking the time to reply. Paula you didn’t mention a deep relaxation but Rowers reply makes me wonder if this may have something to do with it? It is such a wonderful feeling to be free of the restrictions of cancer for a moment. I too have good breathing days and bad although I have pneumonitis, scarring of the lungs, so even on my good breathing days I’m unable to stand and walk, I’m dependent on my electric scooter. Rowers, I agree that meditation and relaxation may be worth looking into?! Please let me know if you do and what you find the results to be, I’m very interested!! God bless you both!!

Candi

Candi,  it seems like the period between 3&5 that I’m most free of pain. I know it’s weird but I’ve hated only being able to sleep on one side. I’m hoping that it’s going to get even better has I heal.

Take Care

Paula

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I hope it gets better for you too Paula, I understand the frustration, the pneumonitis has forced me to be a “back sleeper” and it is so nice to roll over to my side during those hours as you said. It is weird but I’ll take it and hope it gets better here too! :)

Candi

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Hi Candi and Paula, 

I had pneumonitis too- ugh!  I saw one of the other forum members invested in a very fancy pillow system for post-op.  My doctor recommended a memory foam mattress topper that had a gentle six inch incline.  It worked out to be a great solution as we could use it on my side of the bed while hubby wasn't disturbed.  We found it on Amazon for about $130.  The memory foam got me to sleep on my one side.    The pneumonitis will pass!  Stay on top of your doctors so that they can effectively manage the symptoms.  I don't wait for appointments and make ample use of my nurse care coordinator. 

I'll let you ladies know how the mediation works out- at first I was worried about it (alternate religion) until someone explained prayer is talking and mentally active.  Mediation is getting your body to work for you.  I've been trying to DIY (but as a type A) I know I'm in dangerous territory.  The Kansas University Cancer Center offers it for no charge.   

Keep the faith and we'll pull through this to join Tom on one of his cruises!!  

Michelle 

 

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That is the best news I’ve heard today Michelle! My drs are unsure if my pneumonitis will clear up or not because they aren’t sure of the source, but if yours cleared up, I’m going to stay on them for treatments. How long did yours last? It’s the reason I am on oxygen 24/7 and unable to be independen, go back to work or anything. Also looking forward to your meditation findings.

Take Care

Candi

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Hi Candi

I had the pneumonitis about six weeks.  Then one day it started to clear & each day I felt better and better!  Don’t let the doctors determine the outcome!  

I’m reading a great book- Love, Medicine & Miracles by Bernie Siegel MD.   God is on your side!! 

Talk to your doc about what else you can do to boost your immune system.  I started taking Turkey Tail last week.  

Go Candi Go! 

Michelle

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Oh Gosh Michelle, I’ve had pneumonitis for almost 4 months and my oncologist is suppressing my immune system with steroids, having me avoid anything that would work against that. Could yours and mine be different? I’ll still pursue a better therapy from him though and yes God is on our side!! :) Thank you for the additional information and encouragement!!

Candi

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I’m so sorry to hear that!  Four months seems like a long time.  

I’ve been reading Life Extension newsletters.  There’s adjunctive treatment like high dose curcumin & fish oil.  Doesn’t interfere with traditional treatment & reduces inflammation.

I also found a link on YouTube about belly breathing.  I did this for ten minutes lying down every day.  It seemed to help.  

Keep at it & soon this will pass! 

 

 

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I’m trying to remain positive but the last 3 days have been difficult. I’m on oxygen 24/7 and steroids due to the pneumonitis. 2 months ago it seemed to improve things, however, now I am struggling to breathe comfortably, my hands and feet now tingle and I am coughing quite a bit. I’ve contacted my oncologist but I don’t believe much more can be done. I just pray change still comes with the steroid and chemo therapy.

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Hi Candi

I’m so sorry the last few days have been rough.  I can understand. The steroids made me feel so hyper.  Keep pushing your doctor. Are you able to take anything for the coughing?

I saw my Integrative Doctor today.  I’ll be starting acupuncture after the holiday. Could this be an option for you?  

You are in my prayers! 

Michelle

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Thank you Michelle,

I have been in constant contact with my dr., so far he hasn’t suggested anything. The steroids just make me shake, not hyper but right now he’s decreasing my dose so I’m not feeling them much at all. I’m happy you are able to find alternative health balances, I’m not sure if I’m a candidate for acupuncture or not, right now I can’t even get out of bed without my oxygen levels dropping dangerously low. I will look into that and the immune support when I am able though.

Hang In There!!

Candi

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Hi Michelle,

well I’m actually laying in the ER right now waiting to be sent to a room. My breathing got bad enough upon standing, I knew I needed looked at. They suspect a negative progression of the pneumonitis, but I am told I will know more tomorrow. Thank you so much for asking Michelle, God Bless :)

Candi

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Hi Candi

I’m so sorry to hear that & it sounds like you are in the right place.  Time to let other people take care of you.   I will pray for you tonight & each day forward.   A big hug to you.

Michelle

 

 

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Candi - I've had the same thing too - my wheezing is gone, I can take a full breath of air without pain or discomfort and sleep on omg right side - small blessings.

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Hi Katie,

small blessings indeed, I have been repeatedly amazed of the things I daily took for granted. I’m so happy you are now able to rest better, thank you for sharing encouragement. God Bless.

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Hi Paula,

That is part of the frustration in all of this, laying down or sitting still I feel great! No pain, no swelling, no anything, even all of my vitals are right where they want them to be, they tell me I’m healthy outside of the pneumonitis and oxygen crashes. I was admitted last night so now waiting to see a dr if one is available. I still believe in miracles. :)  Thank you for checking in Paula, I hope you’re doing well also, God Bless.

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Good Evening Everyone,

Since I utilized the platform here to express my displeasures I thought it only appropriate to come back and share some good news I just received. :) 

The information I gave earlier in my post was after speaking with the ER dr who admitted me last night. (I’m learning there is a level of importance to knowing the background of a cancer patient to adequately assess). Within the last hour the hospital pulmonologist came in after going over my records extensively and she feels nothing supports the advancement of the pneumonitis or cancer either one. She says all signs point to a slight upper respiratory infection, causing my already delicate state to be overturned. Antibiotics and steroids should calm everything back down she tells me. Hey, she even discussed the likelihood of my returning to work eventually! I’m a relieved and happy girl tonight at this moment. Thank you everyone for your attention and support and thank you Lord for the answer to prayer. :) 

Candi

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