I get prescribed prednisone pretty regularly. Also have the tussin perles and some prescription cough med but don’t take them because they do nothing. The breathing issues are new. The biggest cause of tge cough and choking and vomiting and swelling and vision problem and fevers and falling from no balance and partial deafness is the massive amount of snot coming from the sinuses. I feel like I’m drowning 24/7 for the past year. They haven’t diagnosed me aa asthmatic yet. Not sure I am.
Hmm maybe something like reacuring sinusitis, but once you control mucus the others will lesson, i just have small sinuses(10% breathing from my nose) but a soft palate hole so i get the choking ect
There must be something to dry it up
op I just found this thread and am so sorry you are suffering so damn much.
I too have a very rare cancer, and am a couple of months post chemo and radiation. i’m not young, but I doubt i’ll ever be an old lady either.
anyway, has anyone suggested looking at your diet as a cause of this sinus stuff?
it’s worth trying if you haven’t already.
Answers at last
Suz, I’m sorry you’re dealing with cancer and especially a rare one. I’m finding that the medical literature about mine contradicts itself and opposes the patients’ reality pretty often in the patient group. Do you see that too? How’s your radiation burn? I have some Biofene that I can send you if you want to try it. It’s way better than Aquaphor or Silvadene.
The diet thing is a good idea and I know I’m very allergic to mammal meat but haven’t been tested for other food allergies. I was trying an elimination diet but the latest sinus culture got a 4+ m. catarrhalis so I’ll wait to try elimination again. Maybe I have a food allergy that gets things started and then my anatomical sinus issues encourage infection. I’ve been symptomatic of allergies for years and got tested this spring with positive for horse, dog, cat, grasses, and mold. I’ve started allergy shots, allergy meds, moved my poor dog out and barely touch the horses and run three air filters in the house but no dice so far.
But today I got some answers. I saw a UVA ENT in September but I was too inflamed/infected for a decent endoscopic exam and then he went out of the country for a bit. When that infection cleared in 5 weeks, I saw a local ENT for the infection that came a week later. She did an Xray looking for air fluid levels and said that was fine and there’s no anatomical reason for my issues.
I called UVA and told them about my left eye swelling and culture results and they got me in for a CT today. My left sphenoid (sinus behind the eye) is full, no airspace left, and there’s a mucocele or something. It’s pushing my optic nerve and left eye.There are also other major anatomical issues in my ethmoids and some in the maxillaries. I’m angry at the local doctors since this has been going on for a while and the ENT I saw in Hampton while away in radiation wanted to do surgery in May… I told local docs this. I told local doctors six weeks ago that I had become dyslexic and was losing vision on and off in the swollen left eye. I was told I had allergies and may have to learn to just live with the symptoms or move, and was told the swelling was aging (sudden onset and one sided??). They said there’s no adult onset dyslexia. I’m newly dyslexic because the mucocele is pressing my optic nerve and my brain is getting mixed signals from the eye. I’m so damn sick of Carilion effing up, but have been feeling too sick to get out of town. I had a ride to UVA today, thankfully. It’s been depressing because I’ll had 2-3 decent days here and there and I get excited thinking I’m getting better, only to relapse into hell again every time.
Anyway. Surgery is scheduled and so is an MRI to see what’s up with which nerves involved. If this really is a sphenoid mucocele, it’s the best case scenario but we’ll know for sure after surgery and pathology. Thank you guys for the suggestions and thanks for the PMs. I"m sorry about not getting back quickly. I’ve been pretty overwhelmed and typing sucks right now. I don’t know that the ENT at UVA has ever had a patient so excited to have a bad CT and have a surgery planned, but I couldn’t be happier to have a plan of action.
[QUOTE=CoolMeadows;7291156]
Good but ridiculous news. There was a mistake on my chart and cervical cancer was mistakenly entered Dec 27 of last year. I found out recently when I went in for my follow up, thinking I was going in to schedule a hysterectomy since that’s what they’d suggested earlier but I wanted to get through the radiation for the other cancer first.
I can’t describe the stress of believing I’d been diagnosed with two cancers within two months. They failed to tell me that the Leep was benign and instead entered cervical carcinoma… it still says that when I log in and look at my “current health issues”. Yes, I’ve saved and printed it and sometimes I just go and look at the screen and go back and forth between thinking how lucky I am that this is a mistake, and feeling angry. I spent a couple weeks ungodly furious over the hell their mistake has put me through. I remember questioning it because my understanding of cervical ca is it’s typically slow to develop and I have had regular normal paps, few partners etc. Everything was fine till pregnancy and even then I just assumed the nqr pap was a result of pregnancy which can happen.
So not only did I think I had two cancers within two months, I thought one had developed unusually fast. I thought what if I have a genetic issue predisposing me to cancers and what if I’ve passed it along. It was an unfair amount of stress and I’m so disappointed in the way I’ve been jerked around in general through this journey that I’m not going to let this go. Management has been very apologetic but really, apologies aren’t good enough this time. I’m over the anger and am thrilled but still… this is not an ok mistake.
Other good stuff: my energy is creeping back up and I have a new PCP who is trying to get to the bottom of the recurrent fevers that have been going on since spring '12. I have a neck ultrasound tomorrow to check out lymph nodes that have been enlarged for 8 or 9 months…a little worried about it but so glad to be moving towards an answer, whatever that answer may be, instead of another round of antibiotics.[/QUOTE]
This is a Coth Christmas Miracle! First on other threads you told us you had cervical cancer and cancer of the adenoids. Then you said you adenoid tests showed that was not cancer. Now you’ve found that the cervical cancer you told us about on other threads, the cancer you said was found at the time of the birth of your child, is not cancer. And as we all read when you did post those medical records, none of which said one thing about any kind of cancer, your complaint was that you’d had many miscarriages. Are you sure that you don’t have lymes? That could cause a lot of your physical issues. It’s great that you don’t have cancer. But you need to have a full physical to find out what is wrong with you. And you might want to check with the doctors at Bridgewater too.
[QUOTE=invinoveritas;7324832]
This is a Coth Christmas Miracle! First on other threads you told us you had cervical cancer and cancer of the adenoids. Then you said you adenoid tests showed that was not cancer. Now you’ve found that the cervical cancer you told us about on other threads, the cancer you said was found at the time of the birth of your child, is not cancer. And as we all read when you did post those medical records, none of which said one thing about any kind of cancer, your complaint was that you’d had many miscarriages. Are you sure that you don’t have lymes? That could cause a lot of your physical issues. It’s great that you don’t have cancer. But you need to have a full physical to find out what is wrong with you. And you might want to check with the doctors at Bridgewater too.[/QUOTE]
The medical records I posted did indeed confirm that I have adenoid cystic carcinoma. It is not a cancer of the adenoids. I have never said that I had “adenoid tests that aren’t cancer”. I’ve never said I don’t have adenoid cystic CA, because I very definitely do. It is a glandular cancer that can start in any gland but is most commonly seen starting in the salivary glands - again, it is not a cancer of the adenoids so I’m sorry if it’s name is confusing for you, I didn’t name the thing. Adeno refers to glands. I had a wide excision for it with close surgical margins and perinueral invasion. I then had two months of radiation.
I have no doctors in Bridgewater and never have. I’ve never said anything about Bridgewater. My radiation onc is in Hampton. My doctors are spread out because very few doctors have experience with ACC so ACC patients travel a bit. Nothing weird there. My medical onc is in Charlottesville, my radiation onc is in Hampton, my ENT is in Charlottesville, and my PCP is in SW VA where I live. I do not have Lyme at the moment. I do have adenoid cystic carcinoma and the current issue is severe sinus/eye symptoms and a CT showing what looks like a sphenoid mucocele behind the left eye which is the side that has been swelling the most throughout the past 10 or 11 months of sinusitis that has been bad enough to put me on IV antibiotics. I am having an MRI next week and surgery after. I am nervous about this sphenoid finding because of adenoid cystic doing things like this: http://www.tip.hacettepe.edu.tr/actamedica/2013/Acta13(13).pdf
I don’t think it’s an unreasonable fear given the nature of ACC but let’s hope it’s a case of sphenoidal sinusitis and mucocele.
Cervical cancer was entered into my medical chart erroneously and I am suing for that misdiagnosis. Thank you for saying you’re glad I don’t have cancer, but unfortunately I do have ACC and since it’s classified as chronic/incurable, I likely always will. They found precancerous cervical cell changes during a pap during pregnancy which you’ll find is not an unusual result during pregnancy. The mistaken diagnosis of full blown cervical carcinoma was entered after a follow up to further investigate the changes after the birth of my son. The initial follow up showed a decrease in changes so I went on assuming the bad pap had been related to pregnancy. The next follow up they entered carcinoma, which was wrong. So, for a time my diagnosis was two different cancers which you can imagine was incredibly stressful. Current diagnosis is back down to the one cancer - adenoid cystic.
I hope that clears things up for you.
Here you go. I have never said I have cancer of the adenoids, and I’m sorry the name adenoid cystic confuses you. Most people with no language or science background will make that mistake since they do not know that adeno- refers to glands. Adenoid cystic carcinoma is named such because it’s a cancer that can start in any gland, not that it is a cancer of the adenoids. Does that make sense to you now?
=97623513&filters[recent]=1&sort=1&o=0"]Here is a screenshot of my local healthcare network with the diagnosis of my adenoid cystic carcinoma. I had previously scanned and uploaded and shared one of my pathology reports that noted adenoid cystic CA as well but you must have missed that.
=97623513&filters[recent]=1&sort=1&o=1"]Here is a screenshot from the same local healthcare network referring to the pap during pregnancy, then a cancer diagnosis in October (that was the adenoid cystic), and then a cervical CA diagnosis in December (that was wrong). I do not think it’s nice of you to make up things (like saying I said I don’t have adenoid cystic and saying that I have doctors in Bridgewater… these are things that I have never said). Bringing up my recurrent miscarriages was also unnecessary. As it turns out, they were related to my ex’s chromosomal translocation issues which I think I’ve mentioned on COTH before… years ago.
I hope this clears things up for you and for anyone else who thinks that all cancers are easily diagnosed, managed, or that they all grow fast, respond to chemos or even show up on scans. May you be so lucky to never find out that you’re wrong.
Moral of the story: get a trendy cancer or people will attack you. Invino you know I’d posted my pathology reports showing adenoid cystic yet you came on here to lie. I’ve had enough. I’ve had to fight like hell to get healthcare because it’s not well known or understood. I’ve had to fight insurance because the doctors who’d be the most help are out of network. I’d love to take the suggestions to go to a major cancer center but I can’t because of insurance. So I have put together the best team for myself that I could find in network.
For those who’ve enjoyed kicking me through all of this and have lied about my records, have told me “I am cancer”, have said “better luck next life”, have lied about me ever mentioning adenoids, have accused me of trying to scam money (still haven’t asked for our received a cent), all I have to say is karma is coming your way. You should be ashamed of yourselves for letting the world know you’re subhuman, and apparently also scientifically and generally illiterate.
So orbital mri is done and surgery will be new years eve. A eyes to thighs pet/ct showed a new cluster of nodules in my right lung, guess that explains the obstructive lung deal. And my spine lit up. Dealing with the sphenoid first, then will check into cryoablation in California that lots of acc patients with lung mets have had luck with once the mets get big enough to cause issues. Spine is more problematic since there’s no approved chemo but one thing at a time.
CoolMeadows, I sincerely hope and pray that your surgery is a success, and that this is the beginning of a happy and healthy new year for you. I’ll be thinking good thoughts for you, and sending prayers your way.
Thinking of you too CoolMeadows. I’m sorry you’re going through this.
me too coolmeadows. please feel free to pm me if you’d like to chat or vent or anything at all. ((((hugs))))
I am hoping everything went well with your surgery, CoolMeadows.
Thinking of you and hoping all went well.
Hoping all went well, and hoping we hear from you soon with updates.
![=97623513&filters[recent]=1&sort=1&o=0"]Here is a screenshot of my local healthcare network with the diagnosis of my adenoid cystic carcinoma.](http://s882.photobucket.com/user/Hardboiled_bucket/media/CarilionMyChart%20Screenshots/CarilionMedicalHistory.png.html?filters%5Buser){kind=link}
![=97623513&filters[recent]=1&sort=1&o=1"]Here is a screenshot from the same local healthcare network referring to the pap during pregnancy, then a cancer diagnosis in October (that was the adenoid cystic), and then a cervical CA diagnosis in December (that was wrong).](http://s882.photobucket.com/user/Hardboiled_bucket/media/CarilionMyChart%20Screenshots/CarilionMyChart.png.html?filters%5Buser){kind=link}