| | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | OP  Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | These are the notes that my sister used to explain all of this to my folks yesterday after after I saw the Oncologist. I am looking at a second opinion, although my doctors know me well and I trust them. I would not want to get tricked into doing something that would make me feel terrible for the time I have left. See Bran Hill's Post June 13, 2002. Today I met with Dr. Mary Bretscher. She is my Oncologist. This is the information that needs to be shared: My cancer has returned. It is not curable. The goal is to have the best quality of life possible. If Clinical Trials are going to detract from the quality of life you should not do them. There is no clinical trial with this type of assurance and I will not be pursuing one. Erbitux treatments on a weekly basis will help with white blood counts and possibly reduce the tumor size but there are no guarantees. This is a temporary treatment and is not a cure for the cancer. There will be a time when it no longer works. Memorial Home Care has been contacted to set up night feeding assistance to help maintain strength and meet feeding needs. Hospice is being contacted and arranged when needed. I have chosen to stay at home and not go into the hospital. I asked what time frame we were to plan for, and the answer is months. Carolyn and I will be planning and making arrangements through an attorney over the course of the next few weeks. I am grateful for any help that anyone wants to offer. Email is the best way to contact me. Right now I am very tired and trying to get as much rest as possible. I want to enjoy as much of this time as I can and even though I may be tired I can still be happy.
48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
| | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | I wish I had some real help. A machine that would turn back time. Some way to take away all the terrible words you have had to hear in the past week. But I don't have those and I feel powerless. All I can do is stand by you, put my arm around you, and walk with you. I hope that is enough.
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)
| | | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | Thanks Donna I appreciate every hug and good thought that you and every one else here gives me.
Patty
48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
| | | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | This was a fairly productive week. My sister and I managed to get some things in order and we have set up the home tube feedings with the pump. Bought a recliner so I can sit comfortably and let the pump run during the night. Next week I start the Erbitux. We have an appointment with the attorney to make sure that everything is in order there and I am working with my friends to have my dogs all taken care of also. Then I hope that I can sit back and feel pretty good for several months. Patty
48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Patty, I know you have to courage and the will power . Therefore lets make the momnths up until 12 and then keep doing that. I know there is nothing I can do to help butpray for you and send smome of my guardian angels to you. You have had a rough go of it since I have become one of your friends and none of us are tougher. Keep your thoughts on the upper level and never give up. Wish I could be there for you to help with your everyday chores.
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: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | Thank you Jim. I will plan on getting some gas for the lawn tractor since you don't plan on coming over. The everyday stuff is really the hardest.
Off to church - how did your tests last week come out? I have probably overlooked them.
Patty
48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I get the test results back next Friday. Only thing bad right now is my tongue. Hurts like all get out but I will ignore it. I had to scrounge gasoline yesterday to do my daughters graa, so we took my exwifes LOL I did her back yard which is pretty big too, so she was happy. If I could get there and back real easy and fast, I would take care of all your chores for 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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Patty, I am so sorry. I just found this threaad and I was shocked to see what you said. I know there is little I can say or do but I am thinking of you. I'm happy your sister is there for you. Please know I am here for you whenever you need to talk.
((((((HUGS)))))))
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:)
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Patty,
No words can truly express the sorrow I feel in reading your latest posts.
I want you to know that I am thinking of you and pray that you are comfortable.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | Joined: Mar 2009 Posts: 54 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Mar 2009 Posts: 54 | Patty.There are numerous documented cases of people that were given short times to live that still were alive years later. Medicine has no logical reasons to explain this happening. Never give up hope. Drs are not always right. May the Angels watch over you.
Sweetpea
********
2/09 MEC Rt Submandibular Gland,Tumor Exc,age 68; 4/09 Rt Neck Resect, Excise Rt Lingual Nerve, 10 nodes; 1 month later- Lge Abscess Drained 5/09; 4 more cancers, final path report; 6/09 IMRTx33
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