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Updates for my OCF friends #198092
04-09-2019 05:08 AM
04-09-2019 05:08 AM
Joined: Mar 2019
Posts: 77
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Crystal J Offline OP
Supporting Member (50+ posts)
Crystal J  Offline OP
Supporting Member (50+ posts)
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Joined: Mar 2019
Posts: 77
Hi CM57,

This week I have 3 surgeries-- starting Today. As nd Thursday is my double surgery with 2 of my head & neck Oncology surg e one in the Main OR. I will be admitted afterward into The Cancer Center hospital.

Today is my EGD with dilation-- for the 5th time, my G I surgeon is trying to open up the Pinpoint Obstruction , which is blocking my lower esophagus. It's a dangerous orocedure, he uses a Guide wire to thread through it. He gets so worked up worrying about Perforating the esophagus, because it's happened twice before with me, and it's a big complicaruon..

Thursday Main OR-- First d doctor is addressing the Pre-malignant mass beside my vocal cords #1 He is taking a more extensive surgical biopsy and #2 He is doing Laser surgery to this mass.
He Warned me last week that this will Not eradicate it. He said we will be doing this surgery and following it every few weeks / months ..

Then, my primary oncology surgeon comes in and he is Resecting this Oral tumor/ lump/ whatever it's evolving into.... He biopsied it in January, and now it is Triple the size it was then. It's in front, and it's now visible when I open my mouth! It's in bottom palate, and now has grown into my reconstructed tongue Flap. Not good....
So, he's doing surgery to remove it, submit for pathology...

Given my history of Recurrences & Mets-- anything is possible.
This thing has grown larger since I was in his office just last week !!!
Do benign tumors grow that Fast? And spread out like this one has ?

Anyway, I will be admitted to The Cancer Center afterward, at least for one night.

I am okay at 75 pounds and I have my G tube... I will need it after surgery.

But fasting now, of course for my surgery in G I today.
Then Wednesday, I have to Fast again for early Thursday morning ...

Nuts, but they called me yesterday and said this double surgery cannot wait, because both areas are showing Growth.

Wish me luck.

CrystalJ


4/2017- Stage III SqCC- Tongue
+PNI
Posterior Margin +
Invasive moderately differentiated keratinizing SqCC
Tumor- 6.3 Centimeters
Invades tonsil & salivary glands
Negative for all HPV types
Subtotal Glossectomy, bilateral ND, Tracheo, Mandibullect, Free Flap reconstruction.
10/2017 Relapse, Recur to tongue, Mets to lip, All Pos. Margins.
12/2017 Recur BOT + Marg, re-xcisn Lip, + Marg
2/2018 - 7 wks IMRT
4/19 New Primary SqCC, Floor mouth & tongue flap . 1 mm Marg
New Dx Field Cancerization

Re: Updates for my OCF friends [Re: Crystal J] #198098
04-09-2019 10:01 PM
04-09-2019 10:01 PM
Joined: Sep 2018
Posts: 71
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VirgoMomof3Boys Offline
Supporting Member (50+ posts)
VirgoMomof3Boys  Offline
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Joined: Sep 2018
Posts: 71
Hi Crystal,

I'm hoping that your dilation went well today. I'm not surprised that there is large risk with that procedure, you have different medical issues along with the delicate nature of something going down a person's throat! I'm having faith that with the doctor having experience in doing this procedure on you that his skilled hands performed well.

I really don't know how benign tumors act to be honest. I definitely think they grow, but no idea if they grow slower than malignant or just as fast??

I'll be thinking about you for sure Thursday! Big surgeries so I'm sure you're a little uneasy. frown I believe you said you have your mother and sister to help you, correct? Will they also be keeping your dogs?

Yes, I basically you could say am cancer-free, to my knowledge! I had a ct scan a month or so back and there wasn't anything seen. I have a PET scan next week so hoping the same from that.

I have still been on oxycodone (I've been able to eliminate taking morphine too) to manage my throat pain that is a result of the radiation. For my throat pain to still be so severe, they think I have some nerve damage. They do think my throat is just needing more time to heal and do believe that my throat pain will eventually resolve. I think it's wild that you have got through so much of this without pain medication! It sucks that they make you sick!!


Laura Age 40
Tongue lesion on left side grew and was hurting in mid-August
Dx as squamous cell carcinoma on 9.18.18
Left Neck Dissection and tongue surgery, lost a fourth of my tongue on 10.1.18, tumor had grown to a T3
Margins were clear except front section of tongue margin had three stray cancer cells that were not in the tumor
Additional surgery 10.18.18 to remove another cm near where the stray cells were found
33 radiation treatments from Nov 2018 through Jan 2019
Re: Updates for my OCF friends [Re: VirgoMomof3Boys] #198103
04-10-2019 01:32 PM
04-10-2019 01:32 PM
Joined: Mar 2019
Posts: 77
C
Crystal J Offline OP
Supporting Member (50+ posts)
Crystal J  Offline OP
Supporting Member (50+ posts)
C

Joined: Mar 2019
Posts: 77
Hi Laura,

Good luck with the PET scan next week. I may be weird, but I actually enjoy the scans! I just dose off... And they have always Fascinated me.
But you know what? Not One of any of my scans, ever picked up the cancer that metastasized to my lower lip. And that area had an over the centimeter tumor, Twice, that was invasive and had deep Positive margins!! No scan ever showed it!! Scary.

OK, I had trouble last night...chest pain, because Dr.C. accidentally Tore the mucosa, a good bit ( I have the photos) , trying to get through and dilate that lower Obstruction in my esophagus. He again had to use the Guidewire, to thread through it, and then dilated it carefully over the guidewire. It's been ulcerated and bleeding in there, since radiation... So, the tissue is in had shape.

So last night, he was emailing me over & over, worried that it might develop into Perforation... Monitoring my pain.. Then this morning, he was emailing me again, hoping I was ready for my Big upcoming week ahead.
He has already set up my next on, May 14, just 5 weeks away.

Tomorrow, I am First Case. I check in at 5:30 am at Surgical services, surgeries to begin at 7am.

On clear liquids now.....
This is the exact same scenario as the last time these 2 guys double teamed me in the Main OR. Same thing, I am their first case of the day.
I get up at 3 am, get my shower, and email Dr. B, my primary surgeon... Telling him, Lets Rock!

Surgery supposed to be 2-3 hours, the scheduler told me today.
So, I will get to bed by 8-9 pm, and get up Early!!!

In lots of pain today... Just took some Tylenol. Not working though...
I may be admitted, so I will try to take this Android with me. Probably will be writing notes, after Laser surgery to vocal area, plus mouth sutures. #$!!@&%!


4/2017- Stage III SqCC- Tongue
+PNI
Posterior Margin +
Invasive moderately differentiated keratinizing SqCC
Tumor- 6.3 Centimeters
Invades tonsil & salivary glands
Negative for all HPV types
Subtotal Glossectomy, bilateral ND, Tracheo, Mandibullect, Free Flap reconstruction.
10/2017 Relapse, Recur to tongue, Mets to lip, All Pos. Margins.
12/2017 Recur BOT + Marg, re-xcisn Lip, + Marg
2/2018 - 7 wks IMRT
4/19 New Primary SqCC, Floor mouth & tongue flap . 1 mm Marg
New Dx Field Cancerization

Re: Updates for my OCF friends [Re: Crystal J] #198106
04-10-2019 10:19 PM
04-10-2019 10:19 PM
Joined: Sep 2018
Posts: 71
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VirgoMomof3Boys Offline
Supporting Member (50+ posts)
VirgoMomof3Boys  Offline
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Joined: Sep 2018
Posts: 71
Hi Crystal!

So glad that your surgery went off without a perforation (that you're aware of)! I hate that you're in a lot of pain but geez the procedure sounds uncomfortable so I bet you're still feeling it! I welcomed pain meds for pain but the downside is they really make you sleepy! At least me anyway. Sleep is great except when you sleep off and on so much that it's hard to get normal day to day stuff done and you feel like a loser for not being able to get off the couch! Anyway have they tried all the different types of pain meds to make sure ALL of them are intolerable for you? There seems like there has to be SOMETHING out there for you besides Tylenol.


Wow nothing picked up on your scans!! I guess though in the medical field's defense, they have no other way of finding a tumor! I don't even think there's markers in your blood. Like higher than normal white blood count or anything. I could be wrong on that though but that was my understanding that basically there isn't any indication of cancer other than the tumor (unless maybe if it's different if there's mets….then I'm not really sure what even shows up with that.) Did it surprise them that there was NOTHING there? I wonder how common that is???

I can't believe a doctor was EMAILING you because he was concerned. It sounds like you probably should of been kept in the hospital for observation if he felt there was a major risk of a complication developing! That just comes off as unprofessional to me.

Well good luck again on the double surgery. You being first in line, you get the surgeons when they are fresh and alert!

BTW, I realize you may not read this until after your double surgery. By all means, if you don't have the energy to respond or whatnot for a few days or even next week then take the time you need to rest! smile

Sending positive vibes to you for tomorrow and the following days.


Laura Age 40
Tongue lesion on left side grew and was hurting in mid-August
Dx as squamous cell carcinoma on 9.18.18
Left Neck Dissection and tongue surgery, lost a fourth of my tongue on 10.1.18, tumor had grown to a T3
Margins were clear except front section of tongue margin had three stray cancer cells that were not in the tumor
Additional surgery 10.18.18 to remove another cm near where the stray cells were found
33 radiation treatments from Nov 2018 through Jan 2019
Re: Updates for my OCF friends [Re: VirgoMomof3Boys] #198124
04-13-2019 05:02 PM
04-13-2019 05:02 PM
Joined: Mar 2019
Posts: 77
C
Crystal J Offline OP
Supporting Member (50+ posts)
Crystal J  Offline OP
Supporting Member (50+ posts)
C

Joined: Mar 2019
Posts: 77
Laura,

Before I tell you about my Double surgery, & the fact that I'm now on antibiotics because I have another Pneumonia-- let me first Correct you-- I didn't say Nothing showed up on my scans.
Of Course, my 6.3 Centimeter monster tongue tumor showed up & all 3 recurrences showed up to. In fact, even my current pre-malignant tumor showed up, in my December PET scan. This last scan my entire esophagus Lit Up, as did my base of tongue & larynx.

The one that did not show up, was the one that metastasized to my lower lip, from my tongue. Or, it was a new Primary ?? Or, it spread by my PNI ??
Whatever the case , it never showed up on the scans. How did we discover it? Surgery and pathology.

Ok, Thursday's double surgery. My 2 surgeons were in the hall talking, as I walked in. I got there at 5:15 am, ... They did Intubate me-- Endotracheal intubation to establish an airway... Surgery was over 2 hours...
3 biopsies submitted to Pathology lab, I was expecting only 2. But I can see a Punch, in the back of mouth, right side. So, no idea yet about that one.
The deep biopsy and then Laser surgery, to lesion beside vocal cords , caused bleeding and if one can fathom it-- my Speech became even worse than usual.
To add to it, the second surgery in front mouth, with sutures...just added to the poor speech! I truly don't see how anyone understands me!!

The mouth tumor/ lump/ whatever it shakes out to be-- feels So Much Better to have that large painful thing outta there!! I can tolerate the sutures, better than the lump/ growth.
He did have to cut into my tongue Flap-- but since the tongue Flap remains Numb, almost 2 years later-- I don't care!

Pneumonia-- March 19th, my GI doctor's PA heard Crackles in my Lower Left lung. She heard it repeatedly. So, I told my immunologist and he called in Levaquin for 7 days. No one bothered to x Ray me, before my 3 surgeries this week...
So, I come home from Thursday's double surgery, and feel increasing Worse.
My temp spiked to 101.3, which is high for me ( I run very low, 96-97. That's my normal).
I called the on call surgeon ...he said call back
Friday and report again.
Run around... Finally the Anesthesiologist calls me, and orders an x ray.
Which showed pneumonia.
We don't know yet if from Aspiration or if bacterial. But I'm on antibiotics again now.

I'm weak... Tired, nauseated and have awful coughing. They want a Sputum culture....And my goodness, I have tons of new appointments coming up, including more scoping the throat and my next Laser surgery has already been scheduled.
My eye doctor is screaming at me to come in, for my Radiation induced cataracts, and I have no time.
And my Prosthedontist wants me to come to his office, 1 1/2 hours away to try my new upper, but I do not feel like making that drive right now.
Gotta treat this pneumonia. It's my 5th one, since cancer diagnosis.

Crystal


4/2017- Stage III SqCC- Tongue
+PNI
Posterior Margin +
Invasive moderately differentiated keratinizing SqCC
Tumor- 6.3 Centimeters
Invades tonsil & salivary glands
Negative for all HPV types
Subtotal Glossectomy, bilateral ND, Tracheo, Mandibullect, Free Flap reconstruction.
10/2017 Relapse, Recur to tongue, Mets to lip, All Pos. Margins.
12/2017 Recur BOT + Marg, re-xcisn Lip, + Marg
2/2018 - 7 wks IMRT
4/19 New Primary SqCC, Floor mouth & tongue flap . 1 mm Marg
New Dx Field Cancerization

Re: Updates for my OCF friends [Re: Crystal J] #198139
04-16-2019 09:25 PM
04-16-2019 09:25 PM
Joined: Sep 2018
Posts: 71
V
VirgoMomof3Boys Offline
Supporting Member (50+ posts)
VirgoMomof3Boys  Offline
Supporting Member (50+ posts)
V

Joined: Sep 2018
Posts: 71
Yowza Crystal!

Well I figured this double surgery wouldn't be a walk in the park for you. The pneumonia sucks....you knew they were afraid you have been aspirating (which I realize may not have been the reason for your pneumonia). I'll take it that you didn't mention any other complications, then the surgeries were a success?? I don't mean to make light of pneumonia at all I know that is a serious infection. I guess what I'm getting at is aside from that, did your doctors feel satisfied with the outcome of their surgeries? Were you in for just overnight? Maybe they should have kept you longer to watch for any signs of problems??


I hate that your weak and have terrible coughing but GIRL, getting the tumor cut out has to be such a relief!! Just knowing you have cancer growing in your body really messes bad with your head! That wait is just agonizing to have it CUT OUT. I know you're in pain with the sutures and coughing and vocal cord but I am happy for you that your surgeries to get it cut out of you is done.

The weather has been amazing here (it got up to a beautiful 81 degrees), I went back to work on Monday and I always keep busy with 3 boys! Two of them had dentist appts today and the other I had to get back and forth to baseball practice. So, I have residual fatigue and still on oxycodone but I'm trying to get back to my old life as completely as I can. The rad onc also has me on gabapentin but I don't think it's really doing anything for me.

Even though I'm getting back to my old life, I still feel a strong pull to this site and just to not ignore the fact that I had cancer. It's weird. I want all the symptoms to be GONE but emotionally, this requires a longer healing period is what I'm learning.

I hope your dogs are keeping you company and that you've been able to maybe have been able to have a window open or two to get some fresh air lately. I know you have bigger things to worry about but a nice day or nice weather can improve our moods and we need all the help we can get some days. Especially after everything you've had to deal with, and the stuff you've not be able to deal with because you've been too busy!


Laura Age 40
Tongue lesion on left side grew and was hurting in mid-August
Dx as squamous cell carcinoma on 9.18.18
Left Neck Dissection and tongue surgery, lost a fourth of my tongue on 10.1.18, tumor had grown to a T3
Margins were clear except front section of tongue margin had three stray cancer cells that were not in the tumor
Additional surgery 10.18.18 to remove another cm near where the stray cells were found
33 radiation treatments from Nov 2018 through Jan 2019
Re: Updates for my OCF friends [Re: VirgoMomof3Boys] #198140
04-16-2019 10:04 PM
04-16-2019 10:04 PM
Joined: Mar 2019
Posts: 77
C
Crystal J Offline OP
Supporting Member (50+ posts)
Crystal J  Offline OP
Supporting Member (50+ posts)
C

Joined: Mar 2019
Posts: 77
Hi Laura,

Great to hear from you. Yes, I bet those 3 boys do keep you busy!!

I am awaiting the 3 Pathology reports, from surgery.
Yes, taking Levaquin for the pneumonia, but they also are making me turn in a sputum receptacle, for culture. I may not be taking the correct antibiotic, we will see. I have a tendency to grow Opportunistic infections in my airway, so they wanna rule out anything unusal.

Unfortunately Laura, I will be repeating this Laser surgery quite soon. He told me that he cannot eradicate this lesion this way-- so, he has to keep hitting it again and again.

He is trying to save me from another radical surgery and more radiation....I have the newest photographs of the mass-- and it grew right back after the 4 punch biopsy, done in February 27th. It recovered and grew back. That's why the urgency of him wanting to get in there and try to knock it back.

He said this is going to be an Ongoing thing, Lasering it. C02 Laser.

Just like with my ongoing esophageal dilation. ( yes doing my next one, only 5 weeks after the one last week, it's May 15th.)
I am covered up with appointments, post ops, upcoming infusions, eye surgery ( I have Radiation induced cataracts!), Prosthetic dental appointment 11/2 hours away....and an appointment with new Pulmonary doctor soon.

Yes, yes, it did feel such Relief to get that tumor out!! Believe me, I emailed my wonderful surgeon and Thanked him, telling him the sutures feel so much better, than chewing on that lump!
It was attached to my Flap ( which is Numb so I didn't care) and my poor chin is still puffy and swollen, ....

I hope you are feeling better and can continue the taper. If the Gabapentin is not helping, try to cut it out too.

Crystal


4/2017- Stage III SqCC- Tongue
+PNI
Posterior Margin +
Invasive moderately differentiated keratinizing SqCC
Tumor- 6.3 Centimeters
Invades tonsil & salivary glands
Negative for all HPV types
Subtotal Glossectomy, bilateral ND, Tracheo, Mandibullect, Free Flap reconstruction.
10/2017 Relapse, Recur to tongue, Mets to lip, All Pos. Margins.
12/2017 Recur BOT + Marg, re-xcisn Lip, + Marg
2/2018 - 7 wks IMRT
4/19 New Primary SqCC, Floor mouth & tongue flap . 1 mm Marg
New Dx Field Cancerization

Re: Updates for my OCF friends [Re: VirgoMomof3Boys] #198148
04-21-2019 08:25 AM
04-21-2019 08:25 AM
Joined: Mar 2019
Posts: 77
C
Crystal J Offline OP
Supporting Member (50+ posts)
Crystal J  Offline OP
Supporting Member (50+ posts)
C

Joined: Mar 2019
Posts: 77
Hi Laura,

I hope you are doing better than I am!
My recovery from surgery is being complicated by having E. Coli pneumonia.

My pulmonary doctor had me do a Sputum culture, I turned it in early last week and Friday she told me it has grown out E. Coli.

E. Coli in my lungs? How did that happen?

She said either by aspiration my stomach contents, Or from being on mechanical Ventilator during surgeries.... Or from aspiration during the many other produres, surgeries, scoping I've had in recent minths.

When one gets E. Coli in the airway, it settles in the lower lungs, which is exactly where this pneumonia is for me now.

My pulmonary doctor decided Friday to let the Lab continue to grow out this culture, until tomorrow. She wants to see if it grows anything else in addition to E. Coli.
I usually get Klebsiella pneumoniae, which is a respiratory bacterium.
She is going to switch my antibiotic, tomorrow, because the one I'm on is only 70% effective against E. Coli, and she wants to make sure everything that grows out, is covered....

I don't have a fever now, but still have productive cough....and I'm a little tired.

My sutures have to stay in until end of month when I see my surgeon in post OP appointment. I hope it heals okay, because this was in the irradiated field.

Hope you have great weekend!

Crystal


4/2017- Stage III SqCC- Tongue
+PNI
Posterior Margin +
Invasive moderately differentiated keratinizing SqCC
Tumor- 6.3 Centimeters
Invades tonsil & salivary glands
Negative for all HPV types
Subtotal Glossectomy, bilateral ND, Tracheo, Mandibullect, Free Flap reconstruction.
10/2017 Relapse, Recur to tongue, Mets to lip, All Pos. Margins.
12/2017 Recur BOT + Marg, re-xcisn Lip, + Marg
2/2018 - 7 wks IMRT
4/19 New Primary SqCC, Floor mouth & tongue flap . 1 mm Marg
New Dx Field Cancerization

Re: Updates for my OCF friends [Re: Crystal J] #198185
04-24-2019 02:00 PM
04-24-2019 02:00 PM
Joined: Sep 2018
Posts: 71
V
VirgoMomof3Boys Offline
Supporting Member (50+ posts)
VirgoMomof3Boys  Offline
Supporting Member (50+ posts)
V

Joined: Sep 2018
Posts: 71
Man you do keep those specialists on their toes! E. coli in your lungs on top of the pneumonia whew!!!

I thought it was weird that you said you had radiation induced cataracts. How does that happen if we're not getting radiation to our eyes? My understanding is the radiation is, you know, a laser beam type of thing that is targeted to the specific areas in the head and neck that they want radiated. And by gosh I sure hope they aren't by chance directing that to our eyes!

Do your dogs lay with you and keep you company? How are you eating these days? Bummer that you have to wait for the sutures to come out, I remember waiting to have my sutures removed that was holding the bolster to my tongue, what a crazy experience that was.


Laura Age 40
Tongue lesion on left side grew and was hurting in mid-August
Dx as squamous cell carcinoma on 9.18.18
Left Neck Dissection and tongue surgery, lost a fourth of my tongue on 10.1.18, tumor had grown to a T3
Margins were clear except front section of tongue margin had three stray cancer cells that were not in the tumor
Additional surgery 10.18.18 to remove another cm near where the stray cells were found
33 radiation treatments from Nov 2018 through Jan 2019
Re: Updates for my OCF friends [Re: VirgoMomof3Boys] #198192
04-25-2019 02:56 AM
04-25-2019 02:56 AM
Joined: Mar 2019
Posts: 77
C
Crystal J Offline OP
Supporting Member (50+ posts)
Crystal J  Offline OP
Supporting Member (50+ posts)
C

Joined: Mar 2019
Posts: 77
Hey Laura,

My SCC cancer has returned. The fast growing Oral Tumor-- Pathology report reads:
Invasive squamous cell carcinoma with Deep Positive margins.

Had my CT scan yesterday and I will be in the Hospital all day today getting my infusion. I

Hope you follow me as you can. My immunology called in another antibiotic to the cancer center pharmacy. Maybe it will be ready today and I can pick it up while there.

Crystak


4/2017- Stage III SqCC- Tongue
+PNI
Posterior Margin +
Invasive moderately differentiated keratinizing SqCC
Tumor- 6.3 Centimeters
Invades tonsil & salivary glands
Negative for all HPV types
Subtotal Glossectomy, bilateral ND, Tracheo, Mandibullect, Free Flap reconstruction.
10/2017 Relapse, Recur to tongue, Mets to lip, All Pos. Margins.
12/2017 Recur BOT + Marg, re-xcisn Lip, + Marg
2/2018 - 7 wks IMRT
4/19 New Primary SqCC, Floor mouth & tongue flap . 1 mm Marg
New Dx Field Cancerization

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