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#146404 - 02/25/12 10:45 PM Re: Need help. Total glossectomy/laryngectomy/Trans fl [Re: David2]  
Joined: Aug 2010
Posts: 75
Gerri Offline
Supporting Member (50+ posts)
Gerri  Offline
Supporting Member (50+ posts)

Joined: Aug 2010
Posts: 75
Nebraska, USA
I forgot to mention a key communication method Jim used...texting. He didn't text until after his surgery but quickly became as good as a teenager. That allowed him to keep in touch with our kids who were in college too. Hang in there, it really is manageable. Even though he didnt speak I feel like our communication was strong after his surgery. I'm sure you'll find it to be the same.


CG to sp age 53
4/10 BOT IVb
6/10 Ttl Gloss Lrngectmy L Mndbltmy 5+ Nodes
7/10 Cispl & Rad
1/11 recur lung mets
2/11 Clin Tr Erb Carb 5FU last 5/11
7/11 Tumor growth began wkly Bleo, Taxol, Carbo
10/28/11 Hospice; Passed 11/7/11
#146411 - 02/26/12 05:29 AM Re: Need help. Total glossectomy/laryngectomy/Trans fl [Re: Gerri]  
Joined: Aug 2011
Posts: 593
Kerri Offline
"Above & Beyond" Member (500+ posts)
Kerri  Offline
"Above & Beyond" Member (500+ posts)

Joined: Aug 2011
Posts: 593
MA
Dear Tammy,
These all sound like great suggestions and I'm sure you'll find out which ones work best for the both of you.

As Cheryl previously said and I have expressed the same sentiment...if one of us in our family had to have cancer, I'm glad it was me, because I didn't think I would ever be strong enough to be a caregiver. I have always been an emotional weakling, in my opinion. I remember saying that to my counselor...that I didn't think I could manage things well if the roles were reversed and she said, "You'd surprise yourself.". I think she was right, because when I think back to some of the most challenging times in my life, and there have been quite a few, I did handle things, but with lots of tears. I cry at the drop of a hat, but I also am easily amused!

I guess I shouldn't equate being outwardly emotional with being weak, just one who "wears her heart on her sleeve". You can and will do this. You will stick by and put one foot in front of the other. So will your husband. It will most likely be the most difficult thing either of you will have to experience, but eventually, you will adapt to what has become a "new normal". I realize this is all easier said than done...isn't that how life goes?!

Again, I wish for you and your husband to find the strength to face each day and new challenge. Peace to you, both.

xoxo,
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
42 years old now...I wasn't sure I would make it! Hoping for 40 more!
#146536 - 02/29/12 03:40 AM Re: Need help. Total glossectomy/laryngectomy/Trans fl [Re: Kerri]  
Joined: Mar 2011
Posts: 1,005
tamvonk Offline
"OCF Kiwi Down Under"
tamvonk  Offline
"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)

Joined: Mar 2011
Posts: 1,005
New Zealand
Thank you all for the encouragement. Kris is having his surgery Thursday 8th. We are having it done in the private system as I am not prepared to wait until end of April for a slot in the free public system. We do have some insurance so will manage with family's help. Kris will transfer back to the public system after 48 hours for the specialist services e.g. Swallowing/ speech therapy that he will need. This is huge salvage surgery, very scary. But, I do know we will get through this. I can't look to far ahead. Will always now be terrified for another reoccurence.
Are there any long term survivors of this surgery out there.
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
#146544 - 02/29/12 05:28 AM Re: Need help. Total glossectomy/laryngectomy/Trans fl [Re: tamvonk]  
Joined: Jun 2009
Posts: 875
julieann Offline
"Above & Beyond" Member (500+ posts)
julieann  Offline
"Above & Beyond" Member (500+ posts)

Joined: Jun 2009
Posts: 875
Alabama
Tammy and Kris:

I marked my calendar to say a special pray for Kris on the 8th. I hope that will end his recurrences and he has a speedy recovery. Let us know how he does. You are not alone in worrying about recurrences, but hopefully that will never happen again.
julieann


Julieann
Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer smile
#146550 - 02/29/12 07:01 AM Re: Need help. Total glossectomy/laryngectomy/Trans fl [Re: David2]  
Joined: Feb 2007
Posts: 786
misskate Offline
"Above & Beyond" Member (500+ posts)
misskate  Offline
"Above & Beyond" Member (500+ posts)

Joined: Feb 2007
Posts: 786
San Francisco,CA
Hi Tammy- Will be praying for the best possible outcome for your Kris. Please feel free to send me a message if you'd like.

KATE


Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor

Finished all treatments May 25 2007
Surviving!!!
#146595 - 03/01/12 04:28 AM Re: Need help. Total glossectomy/laryngectomy/Trans fl [Re: misskate]  
Joined: Dec 2010
Posts: 5,260
Cheryld Offline
"OCF Canuck"
Cheryld  Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Toronto canada
Hi Tammy there are survivors out there - I'm sure one will be along... Isn't Mr Ebert one? Hugs - sorry you are both going hough this. will definitely say a prayer on the 8th - and so glad you are having h surgery on your own terms, waiting until April would be a lot to ask of anyone!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
#146919 - 03/08/12 01:13 AM Re: Need help. Total glossectomy/laryngectomy/Trans fl [Re: Cheryld]  
Joined: Mar 2011
Posts: 1,005
tamvonk Offline
"OCF Kiwi Down Under"
tamvonk  Offline
"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)

Joined: Mar 2011
Posts: 1,005
New Zealand
Hi All,
Right at this moment kris is 6 hours into his mammoth surgery.
We had a long discussion with the 2 surgeons who are performing the surgery yesterday. They were very positive and stressed that his CT shows the tumor to be localized at the BOT again with no spread in either the head/ neck or to the lungs. They reiterated that they would not offer us this surgery if they thought he would not be a long term survivor. The surgery is so extensive as they need to ensure that all traces of the tumor are gone and that they have very clear margins.
They were very confident that kris will eat again and he will definitely speak again. Speech will take about 12 months as they do not insert the speaking valve until 6 months post surgery. They say he will be able to hold phone conversations. I'm so thrilled. Life won't be so bad after all. Yes, this is definitely life changing, but we will get there.
May this be the last time we ever have to front up to this dreadful disease.
Thank you , thank you for all the advice and encouragement,
Tammy





Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
#146922 - 03/08/12 01:54 AM Re: Need help. Total glossectomy/laryngectomy/Trans fl [Re: tamvonk]  
Joined: Jun 2007
Posts: 9,716
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,716
PA
Tammy, Im wishing you and Kris all the very best with this surgery! I know you must be on pins and needles the whole time. Its a long road but it will be well worth it in the end. It sounds like Kris has excellent doctors caring for him with such a great prognosis.

Please keep us posted as to the progress. Best wishes!!!!


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
#146934 - 03/08/12 01:16 PM Re: Need help. Total glossectomy/laryngectomy/Trans fl [Re: ChristineB]  
Joined: Jan 2011
Posts: 123
kenswife Offline
Senior Member (100+ posts)
kenswife  Offline
Senior Member (100+ posts)

Joined: Jan 2011
Posts: 123
Massachusetts
Keeping you both in my thoughts and prayers today and every day going forward through this journey! Please keep us posted.

Jill


Jill..CG to Ken, age 43,mom of 1yr old girl.
DIAG:12/9/10 SCC BOT T4N0M0 HPV+
START:1/3/11 IMRT dailyX35 and 7 chemo
END:2/23/11 PEG IN:1/15/11 Out:4/26/11
CT/MRI 4/25/11-marked improvement CT 6/11 new spots
BX 6/23-cancer present
Total Glossectomy sched 7/20/11
7/19/11 Ken's suffering ended
#146943 - 03/08/12 03:56 PM Re: Need help. Total glossectomy/laryngectomy/Trans fl [Re: kenswife]  
Joined: Dec 2010
Posts: 5,260
Cheryld Offline
"OCF Canuck"
Cheryld  Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Toronto canada
Prayers everything goes well for you and kris! Hugs and good thought coming your way.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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