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Re: Updates for my OCF friends [Re: Crystal J] #198492
06-10-2019 01:22 PM
06-10-2019 01:22 PM
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Posts: 63
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VirgoMomof3Boys Offline
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OMG ALL those desserts sound AMAZING!! Did you say butterscotch cashew brownies?? Amaretto cheesecake?? Man desserts are my absolute favorite thing ever! Some people are not 'dessert' people but I don't skip dessert ever! I know most of it isn't good for you but I always say, the people on the Titanic that skipped dessert sure wish they hadn't so HAVE THE DESSERT! One of my all time favorite desserts is the blondie at Applebees. What sucks is a lot of things don't taste the same and with saliva issues I don't enjoy soooo many foods and especially desserts that I used to so whether it still tastes the same is something I have yet to find out.

And yes I remember that you said you can't eat anything and that you aspire liquids which is why you've had pneumonia. frown I just hate that for you but it's amazing that you still bake when you can to bring happiness to everyone that enjoys your efforts. That really does show that your dedication to continuing to live the best life you can even with the setbacks.

I hope you've had some healing with your sutures to your mouth and lip and that things are improving for you.


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] #198493
06-10-2019 09:26 PM
06-10-2019 09:26 PM
Joined: Mar 2019
Posts: 59
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Crystal J Online OP
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Crystal J  Online OP
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Joined: Mar 2019
Posts: 59
Hi Laura,

Ha! I'm actually watching a Baking competition in TV right now!

Yes, all my sutures are still in-- I can see the ones on top of my tongue flap, which is still sutured down to my bottom lip. One of them on top, is a tied one.
The pain is not as intense now, but I still have some infection in there.
I go back to my surgeon June 26th.
Radiation Oncology-- I see my R O in July ( the 19th, I think)
And I'm awaiting an appointment with Medical Oncology

And I have eye appointment coming up for the radiation- induced Cataracts.
I see my PCP in July, for year check up....and I have my inpatient infusion next week ( I think)

Anyway, what have you found out about the breast lump?? Let me know.

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] #198514
06-16-2019 04:12 PM
06-16-2019 04:12 PM
Joined: Mar 2019
Posts: 59
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Crystal J Online OP
Supporting Member (50+ posts)
Crystal J  Online OP
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Joined: Mar 2019
Posts: 59
Hi friends,

It's over a month now, and my tongue Flap is still sutured down to my bottom lip !!
May 14th was this latest surgery-- very extensive, my surgeon Gutted my front Floor of mouth, going over 2 Centimeters Deep in places, trying to get Clear Margins from my Invasive tumors. The tumors originated in Floor of mouth and as they quadrupled in size, they grew into / invaded my tongue flap.
All told, this was my 4 recurrence to tongue flap... 5 or 6th overall recurrence. ( plus it spread twice to left lower lip, and extended deep into my chin.

But this recurrence is 1 year after my Radiation treatments. Yeah, really nice....

I go back to see my surgeon June 26th. On the day I say him Post Op, I had a fever, heat & swelling in face , neck. chin-- and one of the wounds as very infected. Yuck, yuck ..!!
Also, the edges of the wounds on left floor of mouth were Retracted and open-- Not healing. Why ? Because that's exactly where I got a super heavy dose of Rads, because of the cancer there (it was so deep in my chin/ jaw, it was inoperable, so they had to really target it with radiation. Surgery After Rads can be a huge problem, as I am showing.

So, over a month with sutures and my tongue sutured down To My lip .
I've no idea what it will look like when released.
I also don't yet know what treatments in doing next.
I see Radiation Oncology in July ( he is a great doctor!! I enjoy seeing him) and I'm awaiting Medical Oncology.

My swallowing ( I can do liquids only) is terribly difficult, and I'm due a Modified Barium Swallow test, but my GI doc says I have to heal from my 2 surgeries first. And then another esophageal dilation.

So, I wait to see what is next for me.
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] #198518
06-17-2019 03:14 AM
06-17-2019 03:14 AM
Joined: Oct 2017
Posts: 16
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Michael Young Offline
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Michael Young  Offline
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Joined: Oct 2017
Posts: 16
my neo-tongue was sutured to the floor of the mouth. That's the plan, ie, there is no plan to release it anyway


T4aN2cM0 left tongue SCC 10/17
Moderately differentiated SCC
PEG, Trachy, glossectomy, en bloc neck dissection and reconstruction 11/17
Radiation (IMRT variant) and Chemo therapy ( 2xcispltn) completed 2/18
PET - no evidence of disease 05/18
CT - no evidence of disease 07/18
CT - no evidence of disease 10/18
CT - no evidence of disease 02/19
CT - no evidence of disease 06/19
Re: Updates for my OCF friends [Re: Michael Young] #198521
06-17-2019 08:34 AM
06-17-2019 08:34 AM
Joined: Mar 2019
Posts: 59
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Crystal J Online OP
Supporting Member (50+ posts)
Crystal J  Online OP
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Joined: Mar 2019
Posts: 59
Hi Michael,

I answered more thoroughly on the Introduce yourself thread...

If you read my Signature, you'll see that my Primary surgery was in 2017. ( glossectomy, mandibullectomy, neck dissection, etc)

But this year, I've had to begin all over again Because My Cancer Has Returned .

I don't know what's coming next because I have to first heal up from these two surgeries from April & May. But I can tell you my calendar in full of appointments. And I have very complicating comorbidities, like my underlying Genetic Immune Deficiency. Yep, I was born Immune deficient. Every 28 days I am admitted to the hospital to get my infusion of intravenous Immune Globulin. That replaces a small part of what I do not produce...

Anyway I am quite tired now!! And because of my continuing aspiration pneumonia problem, they are also discussing taking me off of my liquid diet. And that's all I have left !

I will get through it somehow..

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] #198760
07-24-2019 10:17 PM
07-24-2019 10:17 PM
Joined: Mar 2019
Posts: 59
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Crystal J Online OP
Supporting Member (50+ posts)
Crystal J  Online OP
Supporting Member (50+ posts)
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Joined: Mar 2019
Posts: 59
Hi Michael, and others,

I saw my Radiation oncologist last week for 3 month clinic visit and to discuss the fact that my Invasive SCC Relapsed, one year Post my Radiation treatments.... Not good.

He is worried and reluctant to do a second round of Rads ( and I myself volunteered to do more Rads)---- one thing he is worried about #1. He said it could rupture my Carotid artery & I could Bleed out from it.
#2. Over & over he said " Dead tissue, Dead patient" he repeated it 5 times! See, one thing that happened with my recent 2 surgeries, is that one side of floor of mouth wound Did Not Heal . The wound retracted, opened up and then became infected. Deep. My chin/ neck became deep red, hot, swollen.... I had a fever and bad pain.... Anyway, that very specific site was one that received a very heavy dose of Rads, because of the Tumor there, in my Mandible.... Dead tissue not healing.

#3 The fact that I was admitted Twice, during my treatments course. For pneumonia, dehydration, fevers, failure to thrive ( I went down to 69 pounds during my Radiation treatments )

He said I am very High Risk for Recurrence secondary to (a) the Multiple recurrent nature of my cancer and ( b) Very close surgical margin . From my Path report " Minimum tumor free distance, 1 millimeter, anterior mucosal margin. "

A 1 Millimeter margin. ??? Too Close !! He & I agree that that's more like a grey area, than a clear margin.. It's just too close.

He talked about the possibility of starting immunotherapy--- and he also took my case back before the Tumor Board. But all of them are scared and concerned about using immunotherapy in me, a person who was born with a genetic Immune Deficiency!

So, yes, I am immune deficient. I recently had Labs done, and it showed how low my white blood cell count is and remains. My Lymphocytes are Low, and that's what is driving my white count to be so low. So here is another big question:
Do I even have enough of an immune system, for the Immunotherapy agent to Work With ??

My Voice & Swallowing disorders surgeon saw me days later in his clinic, and he said the Immunotherapy is a Risk, but so is letting the cancer come back.....

This was my 6th recurrence of my Invasive SCC. Or was it a new Primary tumor?? It doesn't matter. Either way... It was invasive and had deep positive margins. It grew from Floor of mouth-- it grew so large, very fast-- and it grew into / Invaded my reconstructed tongue flap!!! So, my Primary surgeon had to excise the floor of mouth, extensively from left to right and had to cut 2 large holes from my tongue flap.
the first biopsy of it, in late January, was abnormal but benign. Then after the biopsy it grew very fast and quadrupled in size! In April, it biopsied Invasive SCC, keratinizing type. Ugly... Bad... And I bet it's coming back yet again. This was #6. My Primary enveloped my tongue, 6.3 Centimeters, invaded my tonsil, salivary glands, gumline , mandibule... Then 5 months later-- Dorsal tongue ( on tiny sliver of my natural tongue) , then Base of Tongue, invasive extending down throat. Then 2 tumors to bottom lip, so feel into chin he could Not get it all. A floor of mouth 1.
And now After my Rads-- this new aggressive 1 floor of mouth / into my Flap.

I'm quite tired...

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

Field cancerization.....& I am still battling.. #198836
08-04-2019 09:18 PM
08-04-2019 09:18 PM
Joined: Mar 2019
Posts: 59
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Crystal J Online OP
Supporting Member (50+ posts)
Crystal J  Online OP
Supporting Member (50+ posts)
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Joined: Mar 2019
Posts: 59
Hello friends,

Interested to hear it anyone here has had this diagnosis applied to their case-- Field Cancerization, also called Field Carcinogenesis.

My case was taken back before the Tumor Board recently, because I had a New Primary invasive SqCC develop early this year-- which came up Only 1 Year Post my Radiation treatments.

This is tumor #6, in a 2 year period. #6....

The January biopsy of it was " Atypical squamous proliferation, complex architecture" It was abnormal but " not cancer" at that point. But after the 2 punch biopsy-- it took off and quickly quadrupled in size. It grew from front Floor of mouth and it grew into / invaded my reconstructed tongue flap. It grew so large I was chewing on it! And pain deep into jaw and neck... Cancer pain returned.

What a mess.... Now, my tongue flap is permanently sutured down, Flat, to my bottom lip. It Cannot be released because of the 2 large holes cut from it to remove tumor. Floor of mouth was literally gutted out, entire front. Bone exposed, ...tongue flap covers a lot.
My CT showed the tumor, enhancing in my front flap & in floor of mouth.

My Radiation Oncologist, who is one of my favorite guys !!-- Has put the new diagnosis on me, that of Field cancerization...
I can't even get a clear NED out of him, partly because of the field cancerization... But also because the front margin of this new invasive tumor was ... 1 millimeter. ( Minimum tumor free distance, 1 millimeter, anterior mucosal margin). That's waaay too close !!!
" She is at High Risk for recurrence secondary to (a) Multiple recurrent nature of her cancer (b) Very close surgical margin. "

What's next, I dunno.

Then last week I had my cancer Modified Barium Swallow study, which once again showed the severity of my aspiration problem-- it showed I am Aspirating With Every Swallow., no matter if it's thin liquid, thickened liquids, or pudding ... And now she told me no more pudding consistency of anything, because it went down, sort of, and then it came back up! ( my esophageal stricture blocked it). And of course some went into my trachea. ( in March/ April, I had E. Coli pneumonia, from aspirating my stomach contents)

So, my SLP told me last week as we watched the videos of my swallows-- that I have to decide When to Stop taking in orally, completely. No more liquids, ...go NPO completely.

I'm already 100% dependent on my G tube, but I'm fighting taking this last step and having to give up yet another very basic life functions, that makes us " human"-- drinking by mouth. I had to give up Food in late March 2017. I even remember the last things I ate ( or tried to eat).

Anyway, that's a little bit of me lately ( oh, and I have another case of C. Difficile infection. Refuses to go away).

If anyone else out there familiar with the concept of Field Cancerization, let me know. It's too lengthy for me to write about it tonight. ( and you are thinking " thank goodness! ") LOL

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: Field cancerization.....& I am still battling.. [Re: Crystal J] #198839
08-05-2019 08:45 AM
08-05-2019 08:45 AM
Joined: Jul 2012
Posts: 3,213
NYC
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PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)
P

Joined: Jul 2012
Posts: 3,213
NYC
I picked up quite a few articles about “Field of Cancerization I posted. You can look for them in search by typing the word you want!


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Re: Field cancerization.....& I am still battling.. [Re: PaulB] #198843
08-06-2019 12:09 AM
08-06-2019 12:09 AM
Joined: Mar 2019
Posts: 59
C
Crystal J Online OP
Supporting Member (50+ posts)
Crystal J  Online OP
Supporting Member (50+ posts)
C

Joined: Mar 2019
Posts: 59
Thank yoy, Paul B,

This morning Scheduling called me to tell me I'm having an emergency esophageal dilatation, Wednesday . August 7th. It's based on the cancer MBS swallow study I had done last week August 1st.
We already knew that I'm aspirating " With Every Swalliw", but also, the Pinpoint stricture in my distal esophagus is again obstructing liquids, thick and thin, and it has to be opened. Or, attempted to be opened. We will see how it goes Wednesday. Once again.
My last one was April 9th.

For this one, they apparently had to bump someone else out of the schedule, who was having an elective produre, and then put me in..

I can't express how very thrilled I am to be going under and coming out, in pain yet again, this year... Sigh !!!
But whatever it takes to help.... This stricture has been a dangerous one to try to open ( he has to thread a Guidewire through it, just to gain access. Very tight... Bleeding & ulcerated) and he is constantly worried about Perforating me-- because over the years I've sustained 2 serious Perfs that requires extended hospitalizations...by 2 different surgeons.

Paul, I'm curious , is Field Cancerization one of your diagnoses as well? If so, has it been a matter of watchful waiting and increased surveillance, or was some kind of treatment used to " prevent "?

Thanks!

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: Field cancerization.....& I am still battling.. [Re: Crystal J] #198845
08-07-2019 07:29 AM
08-07-2019 07:29 AM
Joined: Jul 2012
Posts: 3,213
NYC
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PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)
P

Joined: Jul 2012
Posts: 3,213
NYC
Crystal,

I’m glad you’re having the dilation sooner rather than later, and hope it helps your situation. I’ve heard of perforations this can cause. In my case, I never had any in the 8 or I had. I’m due for another one myself, but have been busy with health related matters. Mine weren’t bad, and after recovery I was soon eating, and drinking coffee. At the same time the gastric doctor does the throat he does a biopsy of the digestive system for the Barrett’s esphogus I have. probably caused by the acid reflux.

As far as Field of Cancerization, I’m not sure! I think my cancer is more HPV related, although I was never tested with cracks in my health and system. It’s usually smoking or other relations, and has been a while that I mentioned it. For some reason or many reasons, my cancer was allowed to spread, even after having chemo, radiation and surgery multiple times, but this it past January i’m considerate Cancer Free after 10 years
It took to be clear for 5 years!

I’ve always been watchful and waiting! I discovered 6 of my 7 cancers. The other was found during a CT Scan my new dr ordered for surgery, and found it when he asked if I had new swelling since my surgery schedule, and I was right. It was the new spot! I had looked into cancerization articles and found a chemo they were using, and others things. The chemo later failed, so that put a end to that for me, but I’m always keeping an eye outfit mew treatments and long term survivorship!

Good luck with everything!


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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