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Re: Field cancerization.....& I am still battling.. [Re: PaulB] #198936
08-26-2019 06:04 PM
08-26-2019 06:04 PM
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
PaulB,

You have been so nice to answer my questions, so thank you for that!

I hope you are doing as well as you can, considering everything. Did you have to have hip surgery? I wasn't quite clear on what happened....

Take care!

Crystal Jenidoll


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] #198949
08-27-2019 04:52 PM
08-27-2019 04:52 PM
Joined: Jul 2012
Posts: 3,253
NYC
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PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)
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Joined: Jul 2012
Posts: 3,253
NYC
Thank you Crystal! Yes, I had a left hip surgery in the beginning of the month, which hasn’t gone well recovery wise. Now, tomorrow I’m having re/surgery to get the infection out or reconstruction! of the hip!

Thank you for your thoughts!


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] #198953
08-27-2019 08:31 PM
08-27-2019 08:31 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
On my, Paul...
Oh no. You have been through so much, and you surely don't need this complication.

With you, I would be willing to bet that you too, are immune compromised/ immunosuppressed, both from years with a cancer burden & also from the treatments ( chemo & Rads).
Thus, you are more prone to infections.

I am storming the heavens tonight, Paul, with pleading that everything will go well tomorrow, and that you can rest comfortably soon. And start to heal.

Paul, I too will have to live in a facility eventually. Because I have No One willing to help me and he a caregiver, whenever I cannot do for myself anymore.
Right now I live in a condominium that has 24 stairs! Yeah, 10 steps up the front ( and back) from ground into the condo. Then 14 more steps to my upstairs bedroom & bath.

Please let me know how you are, whenever you feel able.
And know that you are in my thoughts !!

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] #198972
09-01-2019 08:59 AM
09-01-2019 08:59 AM
Joined: Jul 2012
Posts: 3,253
NYC
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PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)
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Joined: Jul 2012
Posts: 3,253
NYC
Hi Crystal,

I finally have some time to write back as I’m hooked up to IV antibiotics, and have to keep my right arm still, and my left arm is paralyzed.

Some of your ailments are the same as I had like c-diff back in 2010 as it was caught in the nursing facility as with other infections, so my immune system is not 100 percent, but it’s much better than it was.

Surgery went well, but it was more painful than the first when they said it wouldn’t be. Pain meds were more delayed than I thought, but was so happy when I arrived to my room and was already receiving as much as I could, thenurse wasn’t that nice cause I kept asked for pain relief. There still seems to be an infection in the leg, so at some point I may have to wear antibiotics when and if I leave here for a nursing facility. I have Medicare, but took out a supplemental plan which I have to look over as far as my coverage being I live alone!

24 steps is slot let alone two for myself!

You’re better off getting a jump on everything before you can’t or it becomes more difficult, but would say you’re handling things very well!

My brother bought a new hospital bed for my mother the type you describe and can fold into a seat, but instead of coming home she became a permanent resident of that heath care


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] #198975
09-04-2019 07:13 AM
09-04-2019 07:13 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
Hello dear Paul,

I am getting my new Hospital bed, This Friday!!! Free, from my local Cancer Services.

I am strongly hoping that your Pain is some diminished, or under better control. And that they get a handle on the Infection and that you don't need more surgeries. Enough already, right ??!
Please let me know where things stand ( pardon the pun!)-- As you can ...
I am thinking about you, and hoping for Comfort and we'll deserved & needed pain free Rest!!

Please let me know how you are, Paul.

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: Field cancerization.....& I am still battling.. [Re: Crystal J] #198977
09-04-2019 03:13 PM
09-04-2019 03:13 PM
Joined: Jul 2012
Posts: 3,253
NYC
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PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)
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Joined: Jul 2012
Posts: 3,253
NYC
That’s great you got a hospital bed!!! You’ll find it easier for your comfort! As I mentioned, my brother just bought one for my mom, but she
went into nursing care before she could use. It’s brand new, but too much bed for me, I think? I have a regular electric bed, so I used that. The hospital bed is like 600lb and tooki four young men to drag it in!!

Don’t go crazy moving anything yourself. Hopefully there will be enough people to volunteer!

I’m happy for you, and hope it makes life easier!

Be well!
Paul


Last edited by PaulB; 09-04-2019 03:15 PM.

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] #199022
09-11-2019 09:05 AM
09-11-2019 09:05 AM
Joined: Sep 2018
Posts: 71
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VirgoMomof3Boys Offline
Supporting Member (50+ posts)
VirgoMomof3Boys  Offline
Supporting Member (50+ posts)
V

Joined: Sep 2018
Posts: 71
Hi Crystal!

I see you're still active on here! I'll have to take more time to read all your going-ons. I did see you had your surgery and seem to be recovering.

Well I don't know if you remember but I had a mass in a breast, turns out I have breast cancer now. So all this time I was worried about an oral cancer recurrence, and instead I get a secondary cancer! This one isn't a huge surprise though, it's the same type of breast cancer my mom got when she was 50.

I will be seeing a breast surgeon soon to get the breast cancer journey started. They will be calling me back with an appointment.

Our journeys continue...unfortunately!!


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: Field cancerization.....& I am still battling.. [Re: VirgoMomof3Boys] #199027
09-11-2019 05:18 PM
09-11-2019 05:18 PM
Joined: Jul 2012
Posts: 3,253
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: 3,253
NYC
Virgomomof3boys,

I’m sorry to hear of your recent diagnosis of breast cancer! I wish you the same strength you had with oral cancer to beat this disease!

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






Re: Field cancerization.....& I am still battling.. [Re: PaulB] #199032
09-11-2019 06:26 PM
09-11-2019 06:26 PM
Joined: Aug 2018
Posts: 268
C
ConnieT Offline
Gold Member (200+ posts)
ConnieT  Offline
Gold Member (200+ posts)
C

Joined: Aug 2018
Posts: 268
hugs to you virgomomof3boys. my heart hurts for people on this board, they have become a little like family.


Spouse of 56 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
Re: Field cancerization.....& I am still battling.. [Re: PaulB] #199034
09-12-2019 08:32 AM
09-12-2019 08:32 AM
Joined: Sep 2018
Posts: 71
V
VirgoMomof3Boys Offline
Supporting Member (50+ posts)
VirgoMomof3Boys  Offline
Supporting Member (50+ posts)
V

Joined: Sep 2018
Posts: 71
Thanks Paul! The upside of having a previous cancer, is it's really not as scary this time around. At least that's how I'm feeling at the moment. I know there will be completely different experiences with this one (such as chemo). The best thing I've learned from cancer the first go-round is that we cannot control our cancer, only our attitude about it. I also feel like I went through so much emotionally from it, I came out stronger which is helping me for this one.


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
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