| | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | OP  Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I just received the phone cal I have been waiting for. I go see Dr Chess from Allegheny General on the 20th to discuss whatever the Scan shows for this anneurysm. I tried to at least get a hint for what it showed , but the nurse said the Dr will tell me about it on the 20th. Geez, I hope it is half way decent news.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: May 2004 Posts: 218 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: May 2004 Posts: 218 | 7 Years Out.
Man o man it hard to believe 7 years ago I was literally at the lowest point of my life.
My wife was pregnent with our 5th child and I I was diagnosed with stage 4 Tonsil cancer.
My goal at the time was to make it to his birth. I just saw him march off to 1st grade last week. He is 6. He will remember me! Even if its not that clear. No matter what, if it came back today, he will remember me. My biggest fear was I wouldnt live long enough for that.
OCF was one of the biggest reasons I made it through. There was always someone to talk me off the ledge.
Back then all I wanted was to talk to a long term survivor as you just didnt see a lot of them.
Well, looks like I am a long term survivor now!!!!!!!
Still have dry mouth. Still have neck pain. Still lack the ability to taste certain foods. All in all a small price to pay.
Thanks to all for their love and support.
Prayers to all who didnt make it through (Marci, Danny Boy, Sam).
Hope, prayer, family. Every day is still a gift.
Love
Robert, Christine, Alison, Bob, Tommy, Billy, and Scotty Hamilton
SCC 1.6cm Right Tonsil 10/3/03, 1 Node 3cm, T1N2AM0, Tonsil Removed, Selective Neck Disection, 4 Wks Induction Chemo (Taxol,Cisplatin), 8 Weeks Chemo/Radiation (5FU,Hydroxyurea,Iressa), IMRT x 40, Treatment Complete 2/13/04.
41 Years Old At Diagnosis
| | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Great to hear Robert! Since I have never known exactly which date to celebrate, I use my end of treatment which is coming up on 7 years October 8! Like you, I wanted to see my boys graduate from high school. My youngest is a sophomore at my alma mater, the University of Kansas (3rd generation at that) so mission accomplished. I have officially made it to the first day of school every year with both boys! I tried to renegotiate with God but He reminded me I have packed a life or two into the past 7 years alone and I only asked for 5.
Congratulations to you and good to hear from you.
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Congrats to both Robr and Uptown. This is great to hear about both of you.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Aug 2005 Posts: 307 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Aug 2005 Posts: 307 | Congratulations Robert! I remember you....so nice to see your post. You are so right about every day being a gift. All the best to you and your family.
Shelley
Caregiver to husband Ron. Throat Cancer. Finished 35 radiation treatments on 11/21/04. 8/2/11 small lesion on lower gum, laser Procedure to remove. 3/6/12 Doc. removed another lesion on outside of his neck. Did a skin graft from his chest to replace the skin on his neck. Went to Heaven on 6/24/12.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Best of luck with your appointment Jim.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Thanks Christine. I go this morning to meet with the Dr and get his views about this anneurysm. I hope he says it is no worse and we can wait longer. I hate to face another major surgery.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Here is the latest from the Drs. The anneurys has grown from very small to a 5, which is the ready to burst stage. The Dr asked me if I knew that it could brak at any time and I would be history, I already knew that. LOL He thinks because of the location in my lower body that he should be able to go thru my groin and repair it. WOW is that ever good news . I would be up the next day and go home but have to rest for a month. The earliest the operating room is available right now is November but if there is a cancelation, they will take me. I told him I need a couple of weeks to get a few moere things ready for winter but when he calls for me to just do what he wants to. He then told me that he heard from other Drs that I am a tough man and he like them likes it that way. I never complain or interfere with their job. Hell, I have trusted all of them and still do.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Jim Im glad you are finally getting this taken care of. Nov is only about 6 wks away. Please dont overdo it before the surgery.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 701 Likes: 1 | Hi, Jim, I agree with Christine. Take it easy...also, no climbing trees, no jumping jacks, no roller coasters. LOL!
Both my parents had this surgery...called triple A. Her procedure was in 2005 and his was in 2002. Mom is now 82 and Dad turns 81 on the 29th. They are doing great!
You still have a lot of life in you. All the best as you get ready for your surgery.
Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Best wishes for the surgery Jim. As Christine says November is not that far away but it would be great if they do get a cancellation and get you in earlier. Hope those things you need to get ready for winter are not going to involve anything physical  Take care of yourself. Angel Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: May 2008 Posts: 357 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: May 2008 Posts: 357 | Hi, Jim -
I hope the dr. gets a cancellation - you don't need to be walking around with a five. Take it easy. No lifting.
Hoping all turns out well.
Marlene
Marginal mandibulectomy 6/17/08 resulted in DX of Stage I SCC - gingiva (3 mm) right mandible, buccal side. Clear margins. Occasional social drinker. Smoked last cigarette in 1979. Clear pet: 12/08; 7/20/09. Yay!
| | | | | Joined: Feb 2010 Posts: 235 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Feb 2010 Posts: 235 | Jim, a very good friend of mine had a similar thing. She had the surgery a few years back and is doing great. They also had her wait a few weeks and was told no heavy lifting,etc. I hope any "take it easy" type instructions you get from the Dr you are listening to. Thinking of you.
CG to Spouse BOT, Chemo and radiation started on March 29,2010
Ended on May 14,2010. LET THE HEALING BEGIN!!!
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | This is a minor surgery after the 1st 2 I have had. If I don't keep busy, that will cause more stress than just sitting and just doing the easy things. I figure I won't die until he looks down and says, Jim, it's your time.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I had this surgery in 1999 and 2009 the hard way. LOL This time will be much easier and not much recovery time. WHEW. LOL
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Nov 2009 Posts: 212 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Nov 2009 Posts: 212 | hello Jim, this should be a snap for you after the time with cancer!eaiser than an oil change! Just don't go out and wrestle any beard between now and November.
Stay well
Steve
70 male, athlete...again
SSC of undetermined orgin , early july 09
40 tx radiation, 8 chemo cisplatin and ebuterx
finished TX in mid Sept 09
Clear at the 6 year mark!
Back to swimming, biking and running! just a tad slower
never regained my weight, even when I eat lots and lots, just a skinny guy now
Just way glad to be seeing the green side up!
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | I find it hard to believe that a hospital can't get you a surgery date before November on something that is a 5, ready to burst and will kill you if it does. What are they thinking? Where are you having this done?
Glad to hear that they will be able to do the surgery through the groin. That should make it so much easier.
Good luck to you and PLEEEAZE take it easy until you can get it repaired.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Jul 2010 Posts: 49 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jul 2010 Posts: 49 | Hi Jim,
I've been reading your posts, you are a very strong person. I'm glad they scheduled your surgery, I hope someone cancels or that they make room earlier if possible. Time flies when you don't want it to and it is a turtle when you are in rush :p. In the meantime please take care.
My Dad:
Squamous Cell Carcinoma,Stage 2, Right side of Tongue
Dx 7/19/10
Partial glossectomy and neck dissection 8/18/10
Reocurrence: 04/2011 Base/back of Tongue right side
Surgery: Partial glossectomy, flap 06/15/2011
Rad and Chemo finished on Sept/ Oct 2011
Recovery and assimilation. Enjoying life
| | | | | Joined: Sep 2009 Posts: 229 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Sep 2009 Posts: 229 | I have no doubt you'll do fine! You're one strong fella!
Patty
08-10-09 Partial Glossectomy w/suprahyoid neck dissection
SCC T1NOMX Stage I | 46 years old
| | | | | Joined: Aug 2008 Posts: 238 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2008 Posts: 238 | Hey there, Jim. I will continue to keep you in my prayers. Glad to hear they can do the surgery an easier way this time. A month for recovery from surgery is not bad at all! Hope the time passes quickly for you - Nancy T.
CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Thanks all. I am taking it just a little easier but thinking about this jaw bone that can break at anytime and either side. I have to make sure to tell them before they put me out to not bother my mouth by probing around with the mask and things. I am having the surgery at Allegheny General in Pittsburgh , which is the same Hospital I went to in Jan 2009 for the anneurysm surgewry. The 1st time was in 1996 in Wheeling by a very good surgeon. This was supposed to be done in Jan of this year.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Jim, glad you finally have the surgery set up. Now just take care of yourself before this!!! Slow down and get rest, bulk up as much as you are able to. Drink ensure or Carnation VHC to put some weight on and increase your protein intake to help you heal better. One of my pals here sugested a hi protein powder that I add to my feeding formula. It can also be mixed with any type of liquid, it dissolves easily and has 25 grams of protein per scoop. I get it thru the OCF Amazon link. Its something worth a try. http://www.amazon.com/gp/product/B000GE0D8O/ref=oss_productWhen you have the pre admission testing, tell them about any mouth problems you have. Make sure you stress the fact that you are not a regular person and care must be taken with your mouth. They will use a breathing tube. If you have any throat issues, make sure you speak up during this testing.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | Joined: Feb 2010 Posts: 38 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Feb 2010 Posts: 38 | Hi Jim,
Although I have only been around this site for the past 10 months, you are always one who tells others to 'hang in there' and 'be strong' or let folks know that you are thinking of them.
I hope for you, all of the good thoughts and positive strength that you have shared with them, so that your spirits are lifted and that your burden is lightened.
Hang in there, be strong, and I will be thinking of you during this new chapter of your fight!
Bee-Boppin' Barb
Teacher aged 48, SCC Left side and floor of Tongue, Dx December, 2009. Stage II T2 N0 M0 Successful partial glossectomy surgery with thigh flap and neck dissection 3/8/10. 6 weeks of radiation tx ended 6/30/10. Happily surviving!
"Get outside every day. Miracles are waiting everywhere."
| | | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 618 | Jim,
My father died from a AAA. I get checked every few years for one as these things are genetic. They tell me these things are very treatable when you get in front of them as you are doing.
I know your strength and wonderful attitude will carry you though with flying colors.
Keep the faith buddy!
Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 |
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Thanks all for the boost. I do drink the ensure Christine as you told me to before. I am having problems with my Big Mouth hurting tho. The left jaw was a little bloody this morning, but I will be easting, not with a smile but a grimace. LOL The left side was bloody and the right just hurts like an elephant standing on private areas. LOL I'm all the way back up to 142 lbs. I have to tell this story. I was getting an oil change where my son works and a guy standing beside me asked Ryan how I was doing now. LOL Ryan told him , " my dad is standing beside you so ask him". That was funny. He didn't recognise me because they all tremember when I was big and strong and I remember him with hair. LOL We both had a good laugh and a lot of talk after.Over 55 years of friendship.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | Hey JIm, you are one strong man, and I know you will get to November. Do take it easy. I will keep you in my prayers.
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Jim
You have a lot on your plate brother. Of course I wish you well and await a glowing report in November. As a diversion in the meantime, I used a Body Mass Index calculator to find out that 142 lbs is technically within the "normal" weight range for a man up to six foot one and half inches tall. Just trivia. You are still a heavyweight in my book though.
Charm
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
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