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Karen Rose #101702 08-17-2009 05:38 PM
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Christine my dear....what hospital will you be in? Guess who is coming to see you? I'll bring magazines and we'll have fun. We can relax and watch tv..whatever you want. Remember when I was in the hopital and they gave me Cream of Wheat and the nurse came back and tried to take it away? I said "Over my dead body sweetie" She wanted to give me cold cereal. She obviously has all of her tongue or she would not have suggested that..lol I bet something silly will happen when you are there and we can laugh. If something crappy happens we will tell Charm and he will call or write a letter for us!!

We are going to be Christines Crew:) Oh..I like that!!

hugs and kisses

Last edited by suzanne98; 08-17-2009 05:39 PM.

Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
Karen Rose #101704 08-17-2009 06:04 PM
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Dear Christine,
Wishing you all the very best from another forearm free flapper.
Mine also took very well even though they have been nibbling away at the edges for a few years now to get it right.
The wrist healed very quickly as well as the skin graft from my thigh to cover it.
Still looks like a shark bite though!!
Using a bed pan was something I could not master. Even with my OC unrelated operation last month they kept the bag connected until I could make it to the bathroom...I think about you daily and look forward to hearing from you soon.
Love
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

Gabe #101707 08-17-2009 07:21 PM
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Ok a little help with info here....

I thought the free flap was the piece of skin used to piece together the missing section of someone's tongue. Is that what its called or is the free flap the piece of skin they take from your wrist, thigh or another place?

My new cheek will be made of part of my wrist. The plastic surgeon told me its about 2" that he needs to cover but will take a bigger section than that.

I dont know why I always thoguht the free flap was the tongue. Maybe my silliness at ... yap yap yap and that rhymes with flap. LOL

The doc said he would try to only take a piece from my wrist and if that needs to be redone then it comes from my thigh.

Oh boy, bedpans are right up there with PEG tubes. HATE THEM!!!! So how in the world do you wash your hair? Wouldnt the whole cheek and of course trach need to be covered?

Suzanne, I would love to have company. My surgery is on Monday the 24th. I probably will not be in any type of shape to even know if anyone is there for the first couple days after surgery. Im hoping by Thursday or Friday I will be thinking clearly enough able to at least communicate even if writing. I will be in Lehigh Valley Hospital Center on Cedar Crest Blvd, Allentown. I will count on Charm for his letter writing talents smile

Ok to all those who have gone thru similar procedures, please help me with some info. I already know the everybody's different speech, just looking for some general timeline to go by.

How long til you could talk?
How long til you ate food?
When you left the hospital did you still have the trach?
How long for the trach?
Did you need speech therapy?
How long were you in the hospital?

As always THANK YOU!!!!!!! Every single member who has posted a response or private message to me is unaware of how much they are helping me. Every good wish, every prayer helps me understand that I am not alone and OCF is what is going to get me thrus third round.

Suemarie helped me with my dogs. Donna (Pandora) sent me a beautiful card. Margaret is coming from Wisconsin to visit. Susan2992 is coming to visit me tomorrow. Ray said if Im up to it he will come see me in the hospital. Suzanne is coming to the hospital. All these gestures of caring and kindness make going thru this so much easier for me. I cant say thank you enough!!!!!


Christine
SCC 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 smile
Gabe #101708 08-17-2009 07:21 PM
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Christine, There are not enough words from all of us to let you know we are thinking of you.. Just know in your HEART we are all with you!! Love ya.. smile


2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
ChristineB #101709 08-17-2009 07:55 PM
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Christine,

Free flap is a reconstructive technique, not a destination. The procedure is used to rebuild tongues but also to rebuild breasts after mastectomy and apparently, to rebuild cheeks.

I don't know the answers to the rest of your questions, but I will say that after my surgery, the most painful surgical site was the thigh where they took the skin to cover the hole on my wrist. That stung like a m*@#$r.

- Margaret

PS - you are in my thoughts and prayers


Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
margaret_in_ma #101710 08-17-2009 08:11 PM
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I haven't had the same surgery - but I can answer two questions:

1) You wash your hair by leaning forward and using a hand held shower - I could wash my hair easily this way without getting the trach wet.

Other Misc: I was in the hosp for 2 weeks for the first surgery - trach was taken out before I left hospital but it took awhile to close the hole - homecare nurse changed dressings daily. I had a speech pathologist - both times - who taught me how to swallow and eat and then worked on speech for many months, including lists of words, etc, etc.

I have no idea why they call it a "free flap". I thought the name came from the fact that they didn't have to pay anyone for the skin - I gave it - hence "free". I had a graft from my thigh and it healed very well - piece of cake. The graft which went to my tongue was about 3 inches across and 5 inches long.

Hope that helps

Donna


Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
margaret_in_ma #101711 08-17-2009 08:22 PM
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My nephew recently had a flap on the heel of his foot from the donor site, which was his thigh. (His heel was shattered in an accident) His heel had an area in it which had to be filled in so therefore they took the tissue from his thigh to fill it in. Following the surgery, the next 48 hours or so are crucial, as the skin has to knit together and blood has to flow/circulate to make sure that it is alive, if it isn't knitting and circulating properly then it is dead and it has failed.

I had never even heard of a flap until I needed to have one a couple of years ago.

My first tongue flap was taken from my thigh and unlike Margaret I had no pain or discomfort from my thigh whatsoever.

My second flap was taken from my hip (also bone was taken from my hip for my jaw) that area was uncomfortable for quite a while. My first and second flap is basically an attachment to the little piece at the back left of my own real tongue. With a flap like my it cannot be lifted at the front of the mouth, it is permanently stuck down around the front (behind the line where the bottom teeth sit)

I had a trache in for about 10 - 12 days both operations. My trache was removed both times before I left the hospital.

The nurses washed my hair once - they layed my bed back flat, and had buckets and all sorts of things and somehow or another they shampoo and conditioned my hair, and then dryed it !!

They also have dry shampoo cap packs in some hospitals (especially designed for hospital use - they are heated in a microwave before use)- I have one that I would be more than happy to send to you.

I was able to talk as soon as they took the trache out. They close it up once the swelling starts to go down and they gradually close it for longer periods of time until it can be taken out. Once they are happy and confident that your airways are free from swelling and able to breathe properly without assistance it is removed.

Karen





46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
Karen Rose #101712 08-17-2009 09:09 PM
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Free flap means the donor tissue is completely removed from the donor site http://en.wikipedia.org/wiki/Free_flap.

My first free flap was a success, although I have some residual nerve damage on my wrist. They tend to build the faux tongue oversized because they can remove some later but can't add any. Lots of drains involved, so you can gauge your progress by how many are left!

I used a clipboard with a pen tied to it to communicate. I also had my plastic flies for amusement.

After stuf healed, I was able to talk in person and on my cell phone and be understood the majority of the time, plus I was able to swallow food (They only replaced 2/3 of my mobile tongue, so the muscles on the BOT were all OK. I wish I still had that free flap and was able to talk that well!

On my second free flap (entire tongue), they implanted the Doppler sensor to detect flow in the major vein and artery, but eventually the front part of the flap died from lack of proper circulation. They did let me remove the sensors myself.



Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
Pete D #101713 08-17-2009 09:20 PM
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Next month it will be 3 years since my free flap operation and even though there have been some minor issues I would have to say like Pete's first it was successful.
I was 1 week in intensive care and after they removed all the tubes another week in a room.
My Aussie friends here (Merrie and Helen) are amused at my pictorial history. I take all the photo's of myself before and after procedures. Will send some photo's via email.


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

ChristineB #101725 08-18-2009 06:41 AM
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Christine
Short and sweet answers to your questions:
I could "talk" even with the trach tube in, which amazed the doctors.
I still have not been able to eat food since the operation in February just PEG tube feedings
Trach pulled after a week while still in hosptial, just 'stoma' (medicalese for hole) left - put bandage on it
Definitely needed speech therapy, plus physical therapy and now swallowing therapy,
Twelve days in hospital (3 in ICU)

And I concur with the advice to Bring a pad of paper and pens
I wrote out in advance on index cards in block letters a series of messages: Pain pills please; suction please; when can I be washed; etc as while I could "talk", there was no guarantee of being understood

finally, zero pain on either of my flap sites, not the wrist where they took the flap, not the groin where they took the skin to replace on the wrist, they both healed perfectly.
Good luck
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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