Hello forum --

I am also on another message board, because I am Stage III Head & Neck cancer, as well as oral cancer.

I am 75 -76 pounds, and on Permanent enteral feeds through my G tube. It's been 2 years this month since I've had any solid food. I am allowed only Liquids, and they may be taking that away soon,-- because of repeated pneumonias. In fact, I am taking Levaquin now, for a new airway infection. But, I am home right now, not in hospital tonight !

I had subtotal Glossectomy ( but with all my surgries for recurrences, only @ 1!4 of natural tongue remains. They removed part of right jaw bone, tonsils, all teeth, Had to remove Salivary glands that the SCC invaded, ... Bilateral Neck Dissection, Tracheostomy, ...second tumor floor of mouth.

Primary tumor was a monster-- 6.3 Centimeters long, by 3.2 Centimeters wide, by 2.1 Centimeters thick. It enveloped my entire tongue, and altered and invaded everything in its path.

Right now, I am 11 months post Radiation-- and they just found a new Pre-malignant mass in the purified Todd's of my hypopharynx, right beside my vocal cords.
And, I have a 1 Centimeter new lump, growing in front of mouth....

Before radiation, I had 3 recurrences to Base of tongue, All were Positive Margins!!
Then, it spread to lower lip/ deep into chin/ jaw-- with Deep Positive Margins.

I still have sore throat from Radiation!! Esophagus is obstructed at distal end. Repeated dilation are not working.

But here I am!! Anyone want to talk?
Going to feed my dog now,

Crystal

Hello Crystal!

My gosh you have been through so much! May I ask when your first diagnosis was? My cancer was also tongue cancer but my tumor caused me to be in a lot of pain. Was that the case with your tumor also? Also, were you able to retain any of your sense of taste? I read somewhere that there's a woman that lost her entire tongue but still can taste because of taste buds on the roof of her mouth. I was not aware we have taste buds on the roof of our mouths but I'm certainly happy for that for us glossectomy peeps.

For your recurrences, were those found on the CT or the PET scan? Basically I'm curious to know if it's pain and discomfort that helped you find the new tumors???

I'm so sorry for all the questions and I understand if you don't care to share any of it. So glad to hear your writing from home and not a hospital. A hospital can really take it's toll on our mental well being even though we are there for our physical well being!!

Hi Laura,

Thank you for greeting me here!
Short answer, all my recurrences were found through more surgeries. I had 9 surgeries in a years time, and it's still not over. Unfortunately...

I was actually shopping for my next puppy, when my cancer became apparent. I was talking to Doberman breeders, for my next male puppy.
Laura, I had intense, "shocking" pain in my head, up into my ears. But first, I had other symptoms that I ignored, like the increasing immobile tongue. I could no longer extend the tongue....
I began to lose weight, dramatically.
The day I had Gastrostomy surgery to place my feeding tube,, I weighed 67 pounds.

On the day of my surgery (described in my intro)---- I was 64 pounds. That's no misprint-- 64 pounds.

But back to pre diagnosis-- I began to have infections. They felt like ear infections, but they were actually airway infections. The tumor grew so large, so fast-- it was blocking my airway. I began to produce copious amounts of phlegm, like someone with Cystic Fibrosis. I took 4 rounds of strong antibiotics, with no effect.
I had to sleep almost upright, because of choking on it. It had to change pillowcases everyday, because of this!!
Then one night, in bed I became short of breath-- literally gasping for breath. I almost called 911. But instead, battled through it. I was admitted the next day.

I knew it was cancer, when I went to see my ENT, who has been my doctor for 26+ years now. And he is a widely known, internationally known Head & Neck oncology surgeon.

Mine grew so fast...within a month of seeing only 1 centimeter of it ( visible)-- it grew to the 6.3 Centimeters monster, literally Starving me ( I could no longer eat) and starving me of Air.
I was Gray colored, on day of my 7+ hour surgery, with 5 surgeons. I required blood transfusions, during the surgery. And I was 64 pounds!!

Recurrences-- all mine were found Surgically .
5 months after the above surgery, my surgeon decided to go back in to try to make my Free Flap mobile. See, because most of my tongue was excised ( 3/4 of it gone)-- he built me a Microvascular Free Flap from Scapular muscle --- because I was 64 pounds, he couldn't find any thing to build it from... But he decided on a 16 Inch incision from my back, under left shoulder. 16 and 1/4 inches, my nurses measured it for me!
Anyway, this new "tongue" Does Not Move. I cannot move it, cannot lick my lips...can not move solid food, etc.
So 5 months after surgery, he went back in....and every other little piece of tissue that came out of that surgery ( he submitted all for biopsy)-- were SCC.
Also, .....I had had a Benign Lip lesion ( it was a squamous Papilloma,) and my dermatologist asked my surgeon to shave it down.... No, he decided he didn't like the look of it, so he cut it out.
Ok, up until then, my dermatologist had been injecting it with chemotherapy Methotrexate. Because we feared it would evolve.
Too late-- it was Invasive SCC with Deep Positive Margins.

That was October 2017 ( My SCC Tongue surgery April 25, "2017, just months earlier). From October to December, I had produced even more recurrences. The worst was a new Ulcerated 1 Centimeter Invasive SCC tumor, with Positive Margins, base of tongue, extending down to my Supraglottic Larynx.
( Plus, he went even deeper through my bottom lip, down into chin and even horizontally through my chin, trying to get clear margins, but could not!!! It was still Invasive SCC, with Deep Positive Margins.

He was devastated.

Now, I am 11 months post radiation, and down beside my vocal cords is a new bleeding mass, that just came back pre-malignant .
It's in the Piriform Fossa, a little recess cavity beside the vocal cords where 70% of all Hypopharyngeal cancers arise.

In light of all my recurrences, especially that last base of tongue one, which extended down my throat-- and the fact that I am Immune Deficient_------- my people are worried. One surgeon is already talking to me about Skull Base surgery.

Immune Deficient??? YES, I was born with a Genetic, Primary Immune Deficiency.

Every 28 days, for the past three decades-- I go into the hospital and receive Intravenous Immune Globulin. I've done it for over 30 years now.
In fact, I am admitted this Thursday for it. It's an all day infusion in the hospital.

My SCC is an Invasive strain, Laura. And my doctors know it is made more aggressive, because I lack an immune system to detect it, or to kill it.

I have a distinct disadvantage.

Sorry to write so much!

Crystal

Oh gosh Crystal!

I really did read your weight and think (and hope) that it was a misprint!! I bet your cold all the time without any body fat. I've just lost some weight and man I can tell because I'm just ALWAYS freezing.

I am so sorry for all your going through! I hate that doctors are reactive and not proactive to stopping the tumors but I guess that's why it's CANCER. We don't know a way to prevent them, we can only remove them once they come along.

You are right about OC being a bit of a lonely disease. This site is great but it really isn't very active at all. I have learned to be careful about who I speak to in my personal life about what I'm going through because so many people DO NOT UNDERSTAND. So therefore they make rude and inaccurate remarks that are hurtful. I have a very good friend that doesn't seem to realize that my leftover fatigue issues are not something I can just power through and overcome. If there's no energy to get off the damn couch, don't tell me oh I just need to get outside and go for a walk and then BAM, I'll have energy. No. It doesn't work like that at all. I'm trying slowly to build up my strength but it's not so cut and dry. It's difficult to gage how much to push myself. I have done so many times now just to find myself completely wiped out the next day. Sorry, end rant haha!

The way yours grew from 1 cm and up very fast, I can totally relate. Once mine started growing it grew very fast as well. I don't think quite as quick as yours but it was on its way!!! What's frustrating is that I was calling around to several ENT's to get in and get a biopsy and those people were trying to give me an appt a MONTH OUT. I knew I didn't have time to wait. Luckily I live close to a big city, (St. Louis, MO) and was able to keep calling and calling until I found a place that was willing to get me in the same day. Prime example of how we HAVE to advocate for our health!!!

What a double whammy that your immune system is compromised. It does make sense now how your tumors have been so rampant! But in all honesty, I considered myself very healthy prior to this. I just turned 40, walk 30 minutes daily, did kickboxing once a week, ate somewhat healthy, keep up my friendships, keep up my mental health, worked, no health issues ever....bp, ldl, hdl, triglycerides...EVERYTHING was always in the 'very good' category AND I STILL GOT CANCER. So there you go, your immune system really isn't to blame is what I think.

Were you just going to your general doctor for the earaches? I'm just wondering why they didn't look further into it if they were recurring and antibiotics weren't seeming to help??

I'm here if you need to talk more, I doubt I have much advice as I really don't feel all that knowledgeable, but I can lend an ear!

Hi VirgoMom,

My infusion today-- was an Eight hour day in the hospital. Everything went fine, but just lengthy. Immune Globulin intravenous is what I receive every 28 days.
Very expensive ( 9,500 - 12,000, every 28 days) and it's very necessary to keep me alive.

Yes, my specific immune deficiency carries a serious risk of Malignancies, . My primary Immune deficiency (PIDD) I called Common Variable Immune Deficiency (CVID).
The cancers most often associated with it are Lymphomas (blood cancers) and Gastric cancer. Not Head & Neck cancer ( as I have).

I had peptic duodenal Ulcers, as a 9 year old kid!! Yeah, and it took months of testing to find them, because kids that are normally don't have them.
I also had mouth sores, Thrush, ....sores were slow to heal. ...
Oral Lichen Planus, biopsied and diagnosed. Long standing problem with it. My dermatologist tried several medicines to control it-- like Plaquenil ( for 8 years!!) It's an anti-malarial drug...

My cancer treatment is n part dictated by my immune deficiency--- my Medical Oncologist said No Chemo for you, Crystal.
And noe, she is scared to try Immunotherapy in me. She said it could be very dangerous because it might attack my own organs...she said we have never tried it in someone who is genetically immune deficient.

By the way, I am at the #1 Comprehensive Cancer Center in the entire state of North Carolina. It is #1, in this state.
Not only that, the Head & Neck cancer program here, is #13 in the Nation.
My surgeon, whom I've been with since I came here in Pediatrics 26+ years ago-- is "One of America's Top Cancer Doctors, One of America's Top Curing Cancer Doctors" and he is nationally recognized in Microvascular Reconstruction ( My first surgery), and in the complex Skull Base surgery ( which one of my doctors told me last week, is next for me).

About the 4 rounds of antibiotics, leading up to my crash -- it's common for immune deficient people to need a couple rounds......But yeah, I was admitted by my internist.. They tried to convince me to by ambulance and I refused. I drove myself to emergency room....

64 pounds--- VM, my diagnosis is Severe Protein Calorie Malnutrition.
Cachexia. Directly caused by my head & neck cancer.
I didn't get weighed today in the hospital but I think I am 76 pounds right now.

Are you on a feeding tube? Or did you have one during treatments?
Mine was necessary!! I have no ability to eat...so, no choice in the matter.
You asked me if I have cold body temp? Yes, winter is hard on me!
A new nurse today took my temp and the alarm went off-- it was 95.6. Which is technically hypothermia!
My average is ,97.1 which is fine.

Don't let other people get to you, VirgoMom. I have experienced loss of "friends"..... Many disapoeared, others just never responded at all when I told them of my cancer.
Ha! Let them go.

You just have to find a new tribe....people who Know Where you've Been, what you have gone through thus far.
Because I have been with this medical center for 26+ years-- I have many True friends there. They know me.

I have to carry my feeding backpack with me everywhere... So, I am Seen!! But many people in public are understanding.
Regardless , I am Out There! I don't hide...

Crystal
PS Wednesday my head & neck surgeon is scoping me again, to look at this new bleeding mass in my hypopharynx, which pathology said is pre-malignant . We are especially concerned because my last recurrence Base Of Tongue, had deep Positive Margins which extended down throat to supraglottic larynx.
He will be deciding when to do next biopsy of it.
6 days after that, I have another esophageal dilation, on April 9.
Yeah, I get tired!

Hi Crystal! I hope you're doing well! I went out of town with my boyfriend and stayed busy spending every second with him and basically none on my phone. He works out of town right now so it's just sucky not having him around. I've had doctor appointments every day this week. I'm SURE you know what that's like!!!


No I never did get a feeding tube. I lost a fourth of my tongue in surgery. I basically ate a lot of cream of wheat during and after radiation. Couldn't really taste it but I knew I needed to eat it. My boyfriend completely stocked my fridge with every flavor of Ensure but it was just so thick going down my throat that it made me wanna gag! So there's a bunch of wasted Ensure that's still in my fridge haha.


As far as my friends, eh, nobody tries to be rude, but it's just difficult for them to understand. They want this to be 'over' and to get back to our normal lives where I'm able to do things with them like before. And yes I do have one friend that's pretty impatient and tells me I need to do this and do that and get off pain meds and so on. She obviously doesn't get it that I have my medical team that is responsible for weaning me from pain meds and helping me build my stamina back up and it's not quite as simple as she acts like. I've just resorted to NEVER complaining about anything cancer related to her because she's just going to say something rude and it's just not worth it.

I hate that you have cancer AND the immune deficiency to deal with. I'm glad you are getting care by the top head & neck doctors in your state. I'm sure it helps you immensely that you have doctors that you have faith in!

Hi VirgoMom,

Things are much worse here-- I am heading back to the Main OR very very soon with 2 of my head& neck surgeons, for 2 different surgeries .

Tell me how often does it hapoen, that one has 2 back to back appointments in one day, for 2 surgeons, and then they Both decide to take you to the OR as soon as pissible? That's what happened to me Wednesday.

The mass found beside my vocal cords, which is in Moderate dysplasia, was due to be scoped again Wednesday, so I was there for that, and my next appointment was with my primary head & neck Oncology surgeon-- because the Lump in my front mouth, which he biopsied in January, has now almost Tripled in size! And it is so painful.

So, the first appointment, with the Director of Voice & Swallowing Disorders center,-- and he has been my doctor many years... He scoped me, and we saw that this pre-malignant lesion has grown and recovered from the 5 punch biopsies he took in February. I
So, he said he wants me in the Main OR, to do a more extensive biopsy of it, and then zap it with Laser surgery.
Then he Warned me that Laser surgery will Not eradicate it, that it will not go away, and that he will have to keep addressing this , every 8 weeks.

I showed him this big painful oral growth, and he said Oh, Dr. Browne will want to cut that out! So let's do both surgeries same day! Let me know when he sets the day in the Main OR.

Next, I went to see my oncology surgeon, and yes, he wants it out. General anesthesia, ..maybe some grafting, tissue transfer, etc.

They said what about Thursday? Well, Tuesday I go under anesthesia for G I, for EGD with dilation of my esophagus ( the 5th one since November). MAC anesthedia...
So, General Anesthesia only 48 hours later, might be too much.
So I await a date for the Main OR, after my procedure Tuesday.

Not looking forward to a mouthful of sutures again, and even more swallowing pain, but I have to do it. This mouth tumor is So Painful !! Need it out of there, and another Pathology report.

I am working on getting my Signature down to " under 500 characters". Hard to do, in my case!

I am so glad you are enjoying a good life and are having good times!
It's what I hope for eventually .

Crystal

Man o man o man, Crystal. I thought I had it rough. I am sorry you are going through everything and most of all for the time it is taking. How do you keep it together? Bruce

Hi Crystal. I was reading through this thread, and read about your immunity condition.
Did you ever get immunotherapy? Or is that something the Oncologists considered? I've heard about Keytruda, but don't know much about it, or if it would apply to yourself.
I hope the Spring and the warmer weather makes you feel better. I'm in NY and have been so cold with my weight loss. I will never enjoy the sun more then this Spring and Summer.

Well Crystal from our conversations I knew you had surgery coming up to deal with both the floor of mouth tumor and the one around your vocal cords. I'm not too surprised that they wanna go in right away, these dang mouth tumors grow fast. I do hate this for you though, you've been through soooo much.

As for pain, thank goodness for narcotics! However, I've never slept so much in my entire life! Too bad we could get the level of pain relief we need without the sucky side effect of sleepiness.

I was curious when you said you had five punch biopsies, do you know why they needed five? Is it so they can see where the margins are? You may not know and that's fine, I believe when I had mine, they did 2 punch biopsies. One on the edge and one in the middle of my tumor I believe. My tumor filled the holes from my punch biopsies really quickly too. It's odd because you would think it would slow tumor growth but it didn't feel like that was my experience at all.

I'm so hopeful for your surgery to go well and to get back to puppy shopping. I know that's going to be a good month out at least but I absolutely hope for all to go without a hitch and you're back on the road to recovery.

This past weekend was the most I've been active and running around and eating out. For so long we didn't eat out because almost everything tasted terrible. While on morphine I slept so much of the day that there was no energy to go running around, hell I could barely get up and keep up on laundry and household stuff. So I've finally been off morphine and just on oxycodone so that's really led me to an improvement. The improvement was sorely needed because I'm scheduled to be back to work on Monday the 15th. I've already had one extension, my original back to work date was supposed to be March 18th but it was too soon.

Hi Virgo,

Just today, I entered my Signature here, so feel free to read it.

You & I are Totally different on pain medicinrs-- I don't take them.
They make me so sick, so I take Tylenol when needed. My doctors know me as a person who is extremely pain toletant. They tell me I am Way beyond the curve !!

I'm curious, do you have Active cancer now, requiring that hydrocodone? Are you recently post surgery?

I have to say, I can't relate to taking ongoing pain meds.
When I was admitted to hospital Twice during my radiation treatnents, they Made me use the Morphine pump, so I could get relief to be able to drink liquid nutrition.
But once home, I used just Tylenol.

This double surgery-- yeah, I'll be admitted probably 1-2 days.
My voice& swallowing doctor Emailed me today-- telling me that he will be repeating this biopsy & Laser in the Main OR, in a couple months, Ongoing-- because it's the only way to track what this Moderately Dysplastic lesion is doing.

You know, if I were a Normal individual, we wouldn't be so darn concerned. But, look at my Signature and you will see, my cancer is Invasive. Positive Margins, and my last Base of Tongue recurrence extended down to my Supraglottic Larynx. Very grave, bad sign!!I
So, he is rightly worried about it, and my Radiation Oncologist too told me we have to Follow it closely.

No, I don't want yet another mouthful of sutures. But with my 3 recurrences and Spread to my lower lip -- I had sutures from base of tongue forward..... He tried to reconnect the nerves in my tongue, to make it move again ( it did Not work at all)-- my god, the tongue flap was covered in sutures, and the lip was gutted out Twice ..I
What a mess!

I am glad you get out and enjoy life, and that you have someone. Great to spend time with💖!!

Crystal

Hi Bruce !!

Somehow, I missed your message and just today read it!!

How do I keep it together? Well, truthfully I am a very stoic and strong female. I have hobbies and I absolutely love to cook and Bake-- even though I myself can no longer eat.
My doctors and family ( my mother and sister) are right now the recipients of my food.

Today, I am taking my 14 year old Pointer for a walk, then to Lowe's home improvement to buy line needles ( I need 3-4 bales). I drive a 4 door pickup truck...so, I have room to haul stuff like that.

Tuesday I have my EG D with dilation my esophagus...And I'm waiting to hear about next 2 surgeries.

Enough about me-- please tell me about You !!

Crystal

Hello CM,

Yes, I too am ready for warmer weather!! We are warmer in ND right now-- 75 degrees today.

You've lost weight recently? Are You able to eat real food?

Immunotherapy.... Hmmm, I will answer that one later, dear, because it's a complicated answer. My medical oncologists has talked with me about it, but it could be dangerous in a person like me. I will answer it later.

Right now, heading out to walk dog, and take her with me to Lowes, to buy pine needles for the yard.

I am in some pain with this mouth lesion/ lump/ mass/ whatever it is, but I just shake it off and go do something interesting!!

Back later and we can talk immunotherapy. Have you taken Optivo or Keytruda? If so, what side effects did you have?

little Crystal
By the way, one good thing about tube feeding is it makes my hair grow healthy and long!

Thanks, VM,

This is my second reply to your message.... I hope you can get back to work too, but take care of self as you should.
I did yard work yesterday-- I bought pine needles, 5 bales ( more than I planned on getting) and Spread 3 of them. Great weather, and I want to do much work as needed before I am tied up with healing, and feeling too bad to do it.. I mailed my bills early too!

Drinking lots of fluids today, because tomorrow is a fasting day.


Question-- how long has your Radiation Sore Throat lasted? It seems like mine is never going to leave!!

Crystal

Hi Crystal.
Wow, you have a great outlook on life, and great energy.
Yes, I can eat, but I had never went on a feeding tube, so there were some scary times when I was pretty much on just a diet of nutrition drinks and protein shakes.
Since then, I went to a Nutricianist, a swallowing therapist, and an accupunture therapist.
They all helped me to reverse my weight loss, which continued well after my treatments ended.
Now I eat much better, but nowhere back to normal. But at least I feel better, everyone says I look much better.
No, I never took any immunotherapy yet, so far, no further cancer has been found on my follow-ups.
I just read an interesting article on a new immunotherapy trial for lymphoma, but they say it could work for breast cancer, and head and neck cancer. I hope that turns out to be a viable treatment.
Here is the article link:

https://www.cnbc.com/2019/04/08/can...in-human-trial-of-lymphoma-patients.html