Hello, I wondering if anyone else has experienced an extended bleed from the mouth?

Last Mar, 25, 2014 I bled from my mouth for over 9 hrs. I ended up in hospital was given IV then released with an appt to see ENT.
No one could locate source of bleed. All looked in sinus but not in throat. I began having the taste of what I felt was blood and I could smell something foul. ENT said possible sinus infection gave me Zipromax.
This has gone on until I made appt yesterday to see another ENT. He looked down my throat and told me he saw a large mass at the base of my tongue, another mass near that one in neck and a small one in a node.
I am scheduled to have a biopsy on Tues. Which told would allow ordering of PET scan.
This Dr is surgeon and told me he could treat me with chemo and rad. It was a shock. I went in thinking it was my sinus. The Dr was noticeably upset no one checked for OC after the bleed.
I should also note I was diagnosed with Ulcerative Colitis several years ago I had a colonoscopy this year and they found 10 large "as your thumb" polyps all precancerous.
11 yrs ago had a slow growing cancerous tumor removed from my kidney. The surgeon went in back, removed top part of kidney and I recovered quickly. I was scanned for 5 years. No reoccurrence.
I am, of course, nervous as I am 70 yrs. I was a smoker but quit a year ago. I never drank or did drugs, I am told I am in good shape for my age.
I'd appreciate any comments or help.

Hi Larry,
Just wanted you to know I hear you. My husband, Stephen is 62 and 1yrs post surgery this week. He had stage 4 gum/jaw/lymph nood cancer and is recovered today. I am shocked and sad the doctor(s) did not look in your throat, my husband had also stopped smoking and there also was a smell of decay weeks before he had surgery.

I know this is traumatic and scary, keep yourself close to your best mates or partner. Rest, keep busy, drink loads of water and eat all your favorite foods. Let us know when your surgery/treatement will start.

Feeling your pain, Sophie

Welcome Larry,

Certainly not the kind of trick or treat you want to experience. There are many who have similar OC as you so you can get a lot of practical experiences here.

Why you were not diagnosed earlier is unfortunate but that's water under the bridge. At this point, having an ENT order the biopsy and get the process going is great.

Since you have past experiences dealing with cancer you probably know this but the ENT is one of several specialists involved to treat BOT (Base of Tongue) oral cancer. The chemo aspect is managed by a medical oncologist and the radiation is managed by the radiation oncologist. It would be rare for an ENT-surgeon to order the chemo and radiation treatments. Please check that out and if that is the case, I would seek alternative opinions. Second opinions are a good idea in any case.

You have a rough journey ahead but you will make it through. Stay close and read and ask as you desire.

Don

Hi Larry - I am sorry to hear about your diagnosis. My own diagnosis came because I presented to my primary care physician, reporting bleeding from the back of my throat. I never had a sustained episode of bleeding but I was spitting out an occasional blood clot so I asked him to take a look at it.

You've taken the first step. The next steps will involve diagnosis, via that biopsy, then, if it is cancer, staging and treatment. Good luck. I hope it is not cancer, but if it is, it might be curable. The treatments are not easy, but we have all endured them and you will be able to as well. We're here to help you get through it.

I had a laryngoscopy + incision biopsies on Tues. The Dr said " It looks like a routine tumor we see in the base of the tongue. Probably going to be cancer in that area. It�s going to take us some time probably tomorrow to figure out exactly what kind. We�re doing some special studies on it. Once we have the diagnose, then the insurance will let me scan him from head to toe. We�ll do that this week. We�re not wasting anytime. We wasted enough time at this point."
I haven't heard back yet from anyone. I did notice my front teeth were chipped.
I've had a sore throat, spitting up blood and coughing.My question is how long should I wait?

Call them. They're likely waiting on biopsy results but when you talk to the secretary tell her what the doctor said to you and see if she can move things along. It may be dependent on your insurance's approval too so push a little. It's cancer. It's treatable but expedience is the key. One thing I tell all newbies. Some drs are amazing some, drs suck, you want to believe your dr. has your best interest at heart - absolutely - and many do, however they also have numerous patients with similar issues (particularly if he or she is a cancer specialist - which BTW you should be seeing - someone who deals with this cancer all the time - preferably someone at a CCC - but I digress) - anyway my point is even the best dr, (unless they are related to you) will not be able to advocate for you like a family member or yourself. Take charge. Hugs and welcome.

Thank you Cheryld - the Dr called around 4pm. He said:
That is a cancer, and it�s the same type I thought it was, it a Squamous cell carcinoma. There are three kinds of Squamous cell carcinoma. There�s a poorly differentiated, a moderately well and a well differentiated cancer. The poorly differentiated are much more aggressive. Your�s is kind of a middle ground, a moderately well, so it�s not the most aggressive of the three. But it�s also not the least aggressive of the three, it�s right in the middle. They do respond well to chemotherapy, radiation therapy. The way I looked at it when I did the biopsy, it was too big and too wide spread, in my opinion, to do surgery on it. I just don�t think surgery is in your best interest. We�d have to remove so much of the tongue, I don�t know if you�d even be able to eat very well afterwards. You�d might have to eat with a tube after that. Every time you ate it would make you cough.
So we�re dealing with a base of tongue cancer which is the most common type of cancer that we see. Where we need to proceed from here is we need to do a PET scan to scan you from the top of your head all the way down to your feet.
That is so we�ll know if it spread. The lump I feel in the left neck I feel fairly certain that it spread. This will tell me if that lump is something else or whether its cancer. Now when we do a PET scan it will not only show tongue cancer, it will show if you have a cancer in your intestines, in your liver or any other kind of cancer it will pick those up too. So it�s a real good scan, it�ll pick up any cancer you may have in your whole body.
We need to make sure it�s no where else and I do not think it�s anywhere else. I think it is most in the neck.
The PET scan is not only to look for cancer, you are also put in a special position and we use the way you are in the position when you do your scan to do your treatment.
In other words your scan will also be used for your treatment.
I wouldn�t recommend you leave town. So I want to make an appt for you to see oncologist as soon as possible. Should have an appt tomorrow sometime.
*** Note: I just remembered I was diagnosed as having skin cancer back in Jan 2014 and had it removed. The bleed happened in March.

Larry, are you able to go to a comprehensive cancer center (CCC) to get treated? They use a team based approach where ll the specialists are on the same page and work together making your treatment plan. I can send the list of CCCs if you need it. Ask the doctors if this is related to the skin cancer you recently had.

Wonder why the doctor told you not to leave town? To me that sounds like an unusual request for someone just diagnosed and not starting treatments yet. Im curious about what your doctor is doing when you have the PET. The PET is a test not a treatment.

Best wishes!

Standard treatment for this type of cancer - BOT (usually HPV related) rads and chemo - I am assuming by base of tongue they do not mean your oral visible tongue - they mean down your throat - If this is the case the he's on the money with recommendation for rads and chemo. If it is on your physical tongue - one that you lick an ice cream cone with - I would get a second opinion as this cancer is generally NOT related to HPV and usually the first line of defence is surgery, followed by rads and chemo as it can be more aggressive. As Christine said don't leave this in the hands of a local hospital - get to a top cancer center If at all possible. I am sorry about your dx.. Hugs and we're here.

I saw an RO yesterday, he concurred I have a SCC BOT tumor along with some nodes. I am to go get blood work up and then I am to see to my regular Gastro Dr (I have Ulcerative Colitis) to talk about putting in a Feeding tube. Then Weds the PET scan to see if there is more. During the PET they make a mesh mask for me which they say will give the RAD more accuracy.
I wasn't told if it was HPV related. I was told 8 weeks of RAD and then chemo once or twice a week. I am to see Chemo Dr next Mon.
I was given Script for Norco.
There is no CCC near me. I am told my oncologist is best in town.

HI Larry, I am sorry to hear of your diagnosis. I am a caregiver. My BFF is 71 and we went through nonsense for a few mos. His primary care said he just had some type of cold, then it was heartburn... just ridiculous. I got on the phone, and pushed and pushed and got into an ENT quickly. I was terrified as you can imagine. Ended up with 3.5cm BOT tumor and 1 lymph node. I found this forum and learned so much. I quickly became educated, knew what to ask the docs and just kept pushing until I found the best docs I could find. It is worth the effort to educate yourself and ask many many questions. We just finished week 5 of daily radiation and weekly Chemo, Cisplatin. He is doing great considering what he is going through. He is very healthy and nutrition is very important part of his recovery. I am all over this. I trust our team of docs, it is important to trust your docs. Stay positive, educate yourself, when I finally calmed down and educated myself, I felt like we could beat this cancer. It was not so scarey anymore.

My heart goes out to you, It was only early September when we found out, but the fight goes on and I am confident we will win. 14 days of rads to go and 2 more chemo treatments. I think we will win!

Larry, I had BOT primary, 2.5 cm, and two nodes involved. My treatment was chemo and radiation, no surgery. We saved the surgery to do later but the tumor and nodes showed no cancer after treatment so the surgery never happened.

Wishing you the best.

Larry I was told the same thing about surgery. What they said was "its not the best way to treat this" what I heard was "its inoperable, too big and complicated to cut out, you'll have to take your chances with radiation and chemo."

Rads and chemo are very effective with this kind of cancer. They like to keep an option in reserve, and while its not ideal to have surgery after rads, it is an option.

Rads and chemo are a tough road, but doable. It sounds like you are now in good hands medically. Take a notebook and/or a second set of ears and ask lots of questions. Your body will hit you with all sorts of surprises in the next few months. Every cancer journey is different, but you'll find many good people here who have been over the same bumps in the road.

Hi Larry,

I am having problems with spitting up blood. I've been spitting up blood on and off for the past 4-5 months. I spit up blood streaks and clots, then it comes and goes maybe once every two weeks? I am not so sure. May I ask you if your bleeding was continuous? Could you describe it? I have an appt with a primary tomorrow to get a referral to another ENT. I just recently had another bout of spitting up blood and this is starting to get unnerving.

Hi Larry, welcome to the family. You have had a lot of very good advice already. I would just like to add that chemo and rads are the standard treatments for BOT SCC. It is a tough regimen but doable. I would suggest that you line up some help for the time while you are in treatment. It is a battle best fought with someone who can oversee your nutritional intake and help manage your medical appointments and meds. Good luck.

I had my PET scan and Mesh Mask made. My ENT Surgeon called and told me scan showed I have a tumor on the tongue. It shows that it sits in the middle of the tongue and then goes on both sides. The thickest right is in the middle. The hard mass I feel on the left side is definitely tumor and it�s necrotic, it�s dead tumor, in the middle. Its been there for a while. A pretty good size lump on the left side that�s kind of deep. The right side has two different lymph nodes that light up.
There�s nothing else anywhere else in the body.
I go Friday to have feeding tube put in. Then see Radiation and chemo Dr's next week.

Larry6905

I would like to throw some good luck your way as you start your treatments. Be strong You Can Do It.

Best wishes
Heidi

Has anyone else coughed up a black piece of tissue? It smells foul. In fact is smells like what I have been tasting and smelling the last few weeks.

Should I have been told about staging? I asked about the virus and was told it was not tested. The tumor didn't look like that kind to the doctor.

I am now taking prednisone 20mg tablet could that cause stomach acid? if I will have difficulty swallowing will breathing also be difficult?

Larry6905,

I'm sorry for the anxiety you are feeling. Unfortunately, that's part of the deal with what you are going through.

It's really hard to tell what's going on, because we don't have your medical history to refer to. Steroids can cause digestive issues and there could be interactions with other meds if you are taking any. It could just be the stress you are under.

If I may suggest, make sure all prescriptions are from the same pharmacy and use the pharmacist as a resource. I was fortunate because my father has been a pharmacist all my life. There are some websites that allow you to enter all meds and it highlights any issues. Make sure your doctors know all medicines,mover the counter products and herbal/natural products as well.

As far as the junk you are hacking up, it could be anything. Even partially digested blood could be black and smell.

Try hard to not let the mind wander into all the "what ifs". There's going to be a lot going on for a while.

Hang in there, we are all here to walk with you through this. Best wishes for some smooth sailing.

Hi Larry,

I had BOT which was necrotic. For months before diagnosis, my family would complain about my bad breath. I tried EVERYTHING and nothing worked. It turned out to be the necrotic cancer.

There were a few occasions where weird small chucks of crap got hacked up as well. Not black but odd. I suspect it was pieces of necrotic tissue but never confirmed.

Thank you everyone. I appreciate your concern and comments. Go in this am for PEG

Larry you should have been told about the staging though it's really not that much of an indicator in the whole scheme of things. - also they should have tested your tumor. Hugs and the black stuff could be necrotic tissue for sure. Good luck today.

I go to chemo and radiation dr today. I had PEG put in on Fri and have been spitting up large amounts of phlegm and blood. A home health care nurse came out to give us beginning of training with the PEG. I am experiencing a lot of acid since PEG was placed. Tomorrow I begin Radiation.

Best of luck the first few weeks aren't bad, then depending on where the rads is aimed you may have a metallic taste and eventually no taste (for a while) you may have a raw sore mouth and throat (for sure on the throat) and of course pain. - stay on top of the pain, and take as much by mouth as you can until you can no longer do this and even then continue to swallow as radiation causes muscle damage and impedes circulation (it basically burns you) if you stop swallowing all together for a length of time your muscles could atrophy and you would be on a peg for life, rads does cause swallowing problems as it is so you want to do what you can to maintain function, ask for magic mouthwash and make up a bottle of salt/baking soda (1tbsp each) and water, rinse and spit. Or buy club soda (which you can swallow) and flatten it, drink swish and swallow)

That's a minor crash course. - hugs.

[quote=larry6905]I go to chemo and radiation dr today. I had PEG put in on Fri and have been spitting up large amounts of phlegm and blood. A home health care nurse came out to give us beginning of training with the PEG. I am experiencing a lot of acid since PEG was placed. Tomorrow I begin Radiation. [/quote]

I wouldn't worry about the mucus or the blood at this point. It could be many things. Even something as little as worrying could increase acid or irritating the vagus nerve while placing the PEG would do it. You are in good hands now. If you suddenly start seeing large volumes of blood, go to the ER immediately to be safe. The color of the blood is a good indication of where it is or where it is coming from.

Best wishes for some smooth sailing.

When you have a peg tube you have to be careful with many things. No heavy lifting, try to limit your lifting to only about 20-25 pounds at the most. After eating or doing a feeding you should sit in a chair still for at least a half hour to allow your stomach to settle. If you dont already have a feeding pump, ask the doc for a prescription to get one. This way you can take nutrition while you sleep making it easier to hit your daily minimums. If you do night time feedings prop yourself up on several pillows or raise the head of your bed so you are on an incline. Many here have found comfort in sleeping in a recliner for overnight feedings. Try over the counter acid medicines like zantac. Make sure you discuss every change with your doc. You might want to get checked out if you havent improved in a few days.

Good luck!

I had a PEG placed last Fri then Mon I began to bleed from mouth and my PEG filled up with blood. I was placed in hospital, given a PICC and began RAD and Chemo.
I am experiencing severe ear pain. Has anyone else had this and does anyone have any suggestions? I am on Norco 10-325. I also have severe stomach acid. It is not reflux.
My bleeding has slowed dow a lot but swallowing is beginning to really hurt. So far though I've been able to continue to eat.
I now have a home health care nurse who comes 2x's a week.
I am on many different meds. I went from never taking meds.
I feel like I got on a scary ride and can't get off.
I am home now and went for my first out of hospital RAD.
I appreciate any thoughts or suggestions on the ear pain and terrible acid in stomach.

So you're getting food through a tube..? Maybe ask them to change the formula or slow it down to a more manageable rate?
the meds are likely a big culprit in your gastric issues, try and take them with your feeds.
The ear pain - that's a bit harder... maybe a different med?

hugs..

I would ask whoever put in the PEG (Medical Imaging?) to take a look at it. John has had a PEG for two years and has never had blood in the tube. I would talk to the MO about the ear ache. Maybe it is a side effect of the chemo.

It is not normal to have blood in your feeding tube. They need to check this out! Call the doc who installed it and insist on being seen immediately. If you are experiencing pain in the stomach or abdominal area go to the ER. Its possible something happened and the PEG tube became dislodged. Im speaking from experience, I had some issues with mine years ago from an overzealous doctor pressing too hard on my stomach. The feeding tube ended up being dislodged and embedded in my abdominal wall. I was in agony any time the nurses attempted to put anything in the tube.

If your ear hurts and you have other pain (besides the stomach area) talk with your RO. Ask for stronger pain meds to keep it manageable. Being in pain is actually detrimental to patients as it causes unneeded anxiety.

As far as your intake goes, every single day you need to hit the bare minimums of 2500 calories and 48-64 oz of water. If you can take more in that can only help you get thru this ordeal easier. Even 3500 or 4000 calories daily arent too much while going thru this. As far as hydration goes, ask for an open prescription to get extra hydration from the chemo lab a few times per week. This is especially important for patients getting chemo. Even if it hurts, keep swallowing. You must retain the functionality of your swallowing muscles. Taking sips of water thru out the day will help keep you hydrated and get those muscles moving so they dont forget how to funtion properly.



Hope you feel better very soon!

Thinking of you Larry, hope they managed your PEG tube and your pain. Sophie

Hey larry - I hope things are starting to settle down and you are getting into the routine of treatment. A lot of people seem to have given you good advice all ready so I will just add that I think you should try to swallow something every day. Even if/when you become 100% reliant on the PEG tube you should try to swallow something even if it's just a half a glass of water. It will be easier to get your swallowing back after treatment if your swallowing muscles haven't "forgot" how they are supposed to work. They are just muscles and all muscles benefit from being used. Best wishes!