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Constantly concerned about a sniffle

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Hi everyone, you all seem to be so much help that I wanted to come right here to help me deal with new issue. Ever since being in hospital with apiration phenumonia due to new tx of Dysphagaia, constantly paranoid of cough or gergal sound which is usally phelm to cough out(salvia so bad, to dry to push salvia without water and not allowed water, ugh!) Mostly its clear, when some has been stuck awhile greyish. In between insurance and don't want to run with every sniffle, but so far I have. I just seem unable to convince myself, that I can get a cold, sinus infection even bronchitus, its not always phenumonia. I feel like any idiot even posting this, however, any feedback would be helpful. I feel as if the Lord led me here for earthly help that I have been lacking for 12yrs., it was easier pretending it never happened! Rachel

katenorwood
Posts: 1863
Joined: May 2012

Rachel,

Hello there !  12 yr. survivor awesome !  And by the way welcome to the board !  I had a dx of adenoid cystic carcinoma back in 2011.  But I have crappy lungs....so understand your concerns with pnuemonia !  We do tend to sike ourselves out some days.  But saying this, have you expressed these concerns including insurance issues with your provider ?  Please do, sometimes they can calm some of those what if's.  Everyone is different but usually w/lung issues a fever or pain would raise a red flag for me.  I hope this helps a bit....and remember we are all here with you and for you !   Katie

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Katie, thank you for your response. I was on unemployment and paying COBRA prior to hospitalization and once in there unemployment said since unable to work, no unemployment. Due to few other side effects, Dyspagia, the fact that it has altered my eating dramtically and the amount of times a day and amount of time to do the feeding, it has severlly affected my speech, also I am now severlly hard of hearing, I have applied for SS. I have been approved for medical but does not start till 3/1. I still have COBRA but if I use it before end of month it will cost me 550.00 dollars. If something were severe enough my parents would pay it, so I just keep praying that nothing happens in two weeks so we don't have to. What if I may ask are your lung issues? I hear ashma and COPD can also be side effect of rads?

Rachel

katenorwood
Posts: 1863
Joined: May 2012

Rachel,

Before i was dx'd with ADCC, they thought I had COPD (severe).  Yeah was a long term smoker.  But now they are re-thinking this one because my dx mets to the lungs, but is slow growing.  I've had this in my body for years before it reared it's ugly head.  So my situation is not the same as what you are experiencing.  I'm really glad to hear you'll be on ss with medical.  I was going to suggest this.   Katie

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Katie,
Hi! Mine was the same in the fact that it was caused by chicken pox that I had @ 14 and was slow growing and didn't show in lymph node to be noticed until 28, because it too was a slow moving cancer.

Ihaven't been approved for ss yet, fingers crossed though. I don't want to have to go the lawyer route really can't afford it, raiing an 8yr w/ a very part time dad, costs a lot and not working. So far just approved for medical assistance thank God!

sabriene
Posts: 27
Joined: Aug 2006

Rachel, glad you did post this subject.  Myself had stage 4 of the mouth and bad far back on the tongue. Considering have actually gotten along pretty well with it all until a few weeks ago.  Then I noticed after what food I could eat would start coughing and also have the phelm like you mentioned.  Then by a fluke was reading to try a good tea with some raw honey if possible that it has been known to help people.  Found it has helped some but still hasn't cleared of the situation.  Also, then I have been trying organic apple cider with raw honey and putting a teaspoon of each in a glass of water.  This also seems to help my dry mouth like the tea & honey.  Actually, I wasn't aware of the term of dysphagia until recently and notice you used the term.  It is now my understanding there are two types of dysphagia being oropharyngeal & esophageal dyspagia.  I had severe rad. to the far back tongue area and from what I have found that could have now weakened the throat muscle possible resulting in the coughing.  The other is the esophageal dyspagia and that one can cause coughing due to the feeling of food caught at the back of your throat.  Mayelf would like to think maybe that could be causing my problem for would think or hope maybe which I haven't had done is to diliate the throat to clear the opening.  However, sometime ago they did a swallowing test and felt it wasn't to bad.  At one tine I saw where there was a lady doctor in New York that did just laryngoloy, and felt it all could be treated.  However, not sure where your living but I am in Branson, Mo.  What I read if ones lets it go to long then could lead to phenuonia.  I would be curious to no if you had both rad. & chemo. like me and when you had the last treatment.  Also, where the cancer was apparently in the mouth area.  In meantime might try what I suggested and it takes a few days to show any improbment.  Wish you the best.  Roger

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Roger, thanks for replying, I have oropharengeal Dysphagia. My epiglidous isn't covering my windpipe and my swallow wasn't moving correctly which would help to aspirate. Into lungs. At present time I am on peg tube and not allowed solid or fluid orally at all(so I can't try your advice, but thanks anyway). I did in fact receive both rads and chemo, a lot of both and partial neck dissection to remove lymph nodes on right side of neck, my cancer was stage 3 NPC, it was the size of walmut and located in base of sinus cavaity and just under brain(very lucky), my treatment ended completely in Dec. 2000, all in all it was 9 long months. I am not complaining, I have been blessed with many things starting with the healing so the side effects are constantly popping up just like others on here. That is why I am so glad I found this, we are all part of a family that none of us would have asked to join but none the less connected and understand what we are going through, so your advice even though I can't do is what I was asking for, advice.

God Bless you,

Rachel

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