#34141 07-02-2005 10:31 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | OP  Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | hi everyone
I've not posted much lately, two reasons. firstly my surgery with the ENT didn't go as expected, They couldn't laser as there was no scar tissue in the trachea, just a narrowing giving me 30% less air than I should have and the only way to fix this is by resection of my trachea, a procedure that sounds pretty major to me.
Secondly my Mum has just been DX with stage 3 inoperable oesophagus cancer, they have put in a stent so she can eat soft food, but it's only 4 months since my Dad died and they had been married almost 60 years and I'm not sure she is ready for a fight with radiotherapy and chemo, I know she is 80 years old but she is bright as a button and supported me all through my ops, looked after me and my blind husband, so she put all of us first and now she is so ill, she has lost at least 44lb and I think only the morphine is keeping her going.
Just needed to vent and explain my limited posts
What a s###ty mess
Sunshine... love and hugs
Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#34142 07-02-2005 10:47 AM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Life isn't fair Helen. Sorry to hear about your Mom. I don't know if I would go thru surgery, chemo and radiation at 80 years old. It's tough enough at 55.
Hoping all turns out well with you.
Danny Boy
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#34143 07-02-2005 10:57 AM | Joined: Jan 2005 Posts: 191 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Jan 2005 Posts: 191 | So sorry to hear of your sad news, Helen. You aren't the only one suffering, as my best friend for the past decade suddenly died this week, at age 40. Like your mother, she was my number one supporter through all of this cancer business and the loss of her has been quite palpable.
Despite my grief, I keep pushing myself to make progress, as I know she wouldn't want me going down the deep hole again. Several months ago she verbally kicked my butt to get out of my "angry place" and find more of my own self again.
All I can say is that 2005 isn't going to be my favorite year on this planet. I'm hoping all the bad stuff is behind me now.
My hand is in yours, and I hope we both have better times ahead of us.
Jen | | |
#34144 07-02-2005 01:22 PM | Joined: May 2005 Posts: 497 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: May 2005 Posts: 497 | I will light a candle in prayer for you and your mom as well Helen. Life can be so hard sometimes. One day we will find out why some lives are harder than other ones. I hope you keep coming in here so we can all have hugs. You are loved.
May God be with you,
Barbara~
[i]"The artist, a traveler on this earth, leaves behind imperishable traces of his being." -Fran
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#34145 07-02-2005 03:51 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | Helen, You and your Mum will be in my prayers also. Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
:
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#34146 07-02-2005 03:58 PM | Joined: Jul 2003 Posts: 235 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jul 2003 Posts: 235 | Dear Helen,
I'm so sorry to hear about all of the sh*t you've been going through. You've been through so much and I want you to know that you're in my thoughts. I'm sending you a giant hug across the pond.
All my best,
Dave
Mom's caregvr. DDS failed to dx 01/03. Dx Stg IV SCC 05/03. Induct. chemo, IMRT, 5FU, H, Iressa, Neck disect, radiation. Dad's caregvr. Dx 01/04 Ext. Stg SCLC. Mets to liver/bone 08/04. Died 11/12/04. Mom tongue CA dx 06/13, hemiglossectomy (80% removed) 08/13. Clean margins and nodes, but PNI. 6/15/15: Tongue CA at base of remnant tongue. Declined further tx; hospice.
Died 10/13/15. What a long and difficult journey.
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#34147 07-02-2005 06:50 PM | Joined: Jun 2005 Posts: 20 Member | | Member
Joined: Jun 2005 Posts: 20 | Helen, to quote my students, sometimes life "just sucks", but people are here for you. Good wishes coming your way from this side of the globe. | | |
#34148 07-02-2005 08:02 PM | Joined: Jan 2004 Posts: 316 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2004 Posts: 316 | Hi Helen,
As the other Aussie "oceanangel" qouted, "life sucks" ...very damn true at times.
To quote someone who is so strong: "...Sunshine, love and hugs"... from me also, and if you were here in "Down Under", I'd get you the nicest red available.
Tizz
End of Radiation - the "Ides of March" 2004 :-)
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#34149 07-03-2005 04:21 AM | Joined: Apr 2005 Posts: 68 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Apr 2005 Posts: 68 | I keep asking myself what I did to deserve all of this. There is no answer. Try to stay positive. (easier said than done)
You and your mother will be in my prayers.
Mucoepidermoid carcinoma-intermediate grade. Removed 3/05. Additional surgery to get clean margins and selective neck dissection 4/05. 30 lymph nodes removed. All clear!!
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#34150 07-03-2005 06:05 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Helen, I'm so sorry about how things are going. Your mom sounds like such a fighter going through surgery chemo and rad at age 80. Life really does just suck at times and there is very little else to say except you are in my best and warmest thoughts, hoping you can find the light where it still shines.
nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#34151 07-03-2005 08:28 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Helen
Oh My girl,you have really been thrown in at the deep end haven`t you.
Kind of reminds me of " If it were not for bad luck I would have no luck at all".
You know what Helen ? you are one of the strongest, kindest, women I know. You have been so generous with your time to others on this board and you can bet that if good wishes can make a difference you will find your way through all this.
Our very best wishes for you and your Mum.
Take Care
Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#34152 07-03-2005 11:17 AM | Joined: Dec 2003 Posts: 528 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: Dec 2003 Posts: 528 | Dear Helen
You have a lot to deal with at present. I am thinking of you along with all your supporters here - you have offered so much to us.
I send love and light to you and your Mum. Helen
RHTonsil SCC Stage IV tx completed May 03
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#34153 07-03-2005 11:51 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Helen, My thoughts and prayers are with you and your Mum. Oh my, you have a lot on your plate, wish I were there to help in some way. Love, Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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#34154 07-03-2005 06:10 PM | Joined: Jun 2004 Posts: 155 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jun 2004 Posts: 155 | Helen
I if good thoughts could fix this you have them for sure...I don't know how hard it is to be in the driver seat making treatment decisions but I do know how hard it is to be a passenger,re your Mom...THe only way to is to have a frank disscusion with her regarding treatment and of course encourage her to be aggressive but be prepared to accept her choices..my granddad is 92 and also bright as a button dealing with several TIA's and possible carotid aterey surgery which they are not sure he can survive and his attitude is GO FOR IT..He is not saying that lightly he knows without the surgery he has a possible greater chance of survivng with a lesser quality of life but ultimately it will be his choice
Caregiver Husband Bob SCC tongue t2nomo Partial Glosectomy/neck disection 6/04 rad ending 9/23/04
Osteoradio-necrosis of the Mandible (ONJ) DX 6/09 Surgery 7/2/09 mandible resection/ several teeth extracted/ neck dissection NO FLAP and aggressive antibiotic therapy.
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#34155 07-04-2005 05:10 PM | Joined: Jun 2005 Posts: 349 Likes: 2 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2005 Posts: 349 Likes: 2 | Helen. After so many supportive, kind and loving thoughts you have posted to me, I can't believe you had all this going on !! Please accept my "hugs" and to wish you the best. I wanted to ask if you had heard of the CyberKnife...? You might look into possible implications for one of you. http://www.stanfordhospital.com/clinicsmedServices/COE/cyberknife/ckHome.html
Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
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#34156 07-05-2005 03:45 AM | Joined: Jun 2005 Posts: 3 Member | | Member
Joined: Jun 2005 Posts: 3 | dear Helen,
All my prayers are with you and your mother...
God bless you.
yuumu | | |
#34157 07-05-2005 03:59 AM | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2003 Posts: 382 Likes: 3 | Helen-
Many prayers sent your way. Sometimes you just have to close your eyes and hang on for the ride, but wanted you to know you are not alone! Across the miles with love, Kris
SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
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#34158 07-07-2005 10:06 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Thanks all for you love, hugs and prayers.
Well my Mum has been told no treatment is available and I just hope that is not because of her age, the family has been told months rather weeks, but we will see.
I saw my ENT doc on Monday and he says to operate would possibly make things worse.
I have a paralised vocal cord and to repair that would make worse the 30% of narrowing of my trachea, so when you ask about side effects, remember that some are so rare that no-one ever mentions them.
Once again thanks to all my friends and fellow travelers....
Sunshine... love and hugs
Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#34159 07-07-2005 03:20 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | Helen, please try to hang in there, and try to enjoy every day that you and your Mom can share. Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
:
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#34160 07-08-2005 04:14 AM | Joined: Apr 2005 Posts: 80 Senior Member (75+ posts) | | Senior Member (75+ posts)
Joined: Apr 2005 Posts: 80 | We get caught up in our own trials and tribulations...feeling sorry for ourselves, and then hear of someone going through unimaginable pain, as you are now. My issues pale in comparison. Losing your Dad, your Mom's prognosis, your health worries.... I am so sorry you are dealing with all this now. I know you will be a "rock" for your Mom and help her however you can.
Hugs to you and your family.
Jennifer
Jennifer
Stage II (T2N0M0) SCC diag 4/21/05; partial glossectomy & selective neck dissection (good margins and lymyph nodes negative), jaw split, 1/3 of tongue removed, free flap from left forearm - 5/23/05; 42 years old at diagnosis
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#34161 07-08-2005 03:24 PM | Joined: Mar 2004 Posts: 117 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Mar 2004 Posts: 117 | Helen,
I am so sorry to hear about your mom. I wish there was a way I could really help, but I guess the best I can do is to let you know that I am praying for you and your mom. I am sorry that you are both suffering.
sunshine, love and hugs to you both,
Barb
SCC tongue, stage I (T1N0M0), partial glossectomy and modified neck dissection 7/1/03
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#34162 07-08-2005 03:35 PM | Joined: Aug 2004 Posts: 217 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Aug 2004 Posts: 217 | Helen,
Tom and I join our prayers and support with the others being sent your way. You have been so generous with your caring; I hope ours will affect you in a positive way.
How fortunate you have been to know your parents as a grown woman - and how wonderful it is to know you can be there for them in their time of need. God has blessed your family and He'll not forget you.
All our best.
Nicki and Tom
Nicki, wife of Thomas
dx July 2004, SCC, Stage 4 Tonsil. Tx begun 8/4/04. Cisplatin/Xeloda x 4; IMRT 7 wks, 8/7 - 10/25/04 Modified Radical Dissection (right), Selective Dissection (Left) 12/10/04.
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#34163 07-12-2005 04:09 PM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Dear Helen,
I am so sad to read of your mothers cancer and the fact that they cannot fix your thorax problem.
My cousin's motherin-inlaw had esaphegeal cancer at about the same age as your mother. She did not survive it, but I do not remember what the treatment was, if any. I will email him and ask. Of course every case if different so the info may may useless.
You are having an absolutely horrible year. Hopefully things will turn into sunshine and rainbows soon. Keep your chin up.
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
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#34164 07-20-2005 04:15 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Dearest Helen,
I'm sorry to hear that things have been so rough for you. I've been out of state for awhile and am reading about all that's gone on with you, I wish I could make it better.
Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#34165 09-02-2005 08:51 AM | Joined: Mar 2004 Posts: 76 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Mar 2004 Posts: 76 | Dear Helen,
I am so sorry; they say God never gives us more than we can handle but I think some folks go thru the line up more than once!
I pray things get better for you and yours.
Love Maria
01/04 SCC of tongue base, T1N0M0
03/04 Partial glossectomy
04/04 Rad
12/04 Throidectomy(follicular cancer)
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#34166 09-06-2005 07:26 PM | Joined: Jan 2004 Posts: 134 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Jan 2004 Posts: 134 | Helen,
My goodness! I am so sorry...You were so helpful to me through my mom' sickness..I cant imagine what you are going through now..With yourself and your mom going through what you are goin gthourhg so soon after the loss of your father.
Helen, I am praying for you and sending you a huge hug! You need it. Please let us all know how you are doing. I am so sorry about your vocal cord and your mom's illness as well...My heart really goes out to you in this time. I am here for you
Love and hugs
Stephany
Stephany.Daughter of mother who passed away 3/26/05 from Recurrent Gum Squamous Cell Carcinoma. She had 3 surgeries, and 6 weeks radiation, and then passed due to infection. I miss her very much. She was 65 years young when she passed. Love you Mom!
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