#44276 11-30-2004 06:45 AM | Joined: Sep 2004 Posts: 153 Gold Member (100+ posts) | OP  Gold Member (100+ posts)
Joined: Sep 2004 Posts: 153 | I am happy to report my brother's checkup went well. There is no longer activity in the chest or lymph nodes and they thing the spot on his lung is a scar from radiation. He is having a great deal of pain in his mouth right now and the doctors cannot tell if it is an infection or cancer. They think the tumor is still shrinking on this tongue. I'm just so relieved it is out of the secondary areas! They send him to the first doctor he saw back in July to further evaluate the infection and that doctor asked him where he'd been. Seems David was suppose to see him every 4 weeks since JULY! We had continually asked his other doctors when he would see the first one again and they said, "Not till we're through with him and this is over." The first doctor said he was the only one who could evaluate the status of the tumor and could have helped head off this infection and is now trying to help my brother manage the pain he has been dealing with for so many months now. That was the last straw for me. I said, we've got to get you to Houston! So we are trying our third time for admission. Please keep this situation in your prayers. The radiologist said he is still terminal, but his body's response to the radiation and chemo has definately prolonged his lifespan. We are so thankful for each day, hour and minute, realizing, while some have more, so many have less.
We buried my husband's cousin's wife yesterday. She was 41 with a husband, a 13 year-old son and a 2 year-old daughter. Uterian cancer. We loved her so. She was such a good person and faithful to God until the end, thanking him, even in her pain, for his blessings. When the preacher left her bed the night she died, she reached for his hand and said, "Bless you." I am in awe of her strength and wisdom. We had sheilded my 5 year old niece from JoLynn's death, thinking that as a child, my brother's illness was enough for her to deal with. When my sister had to take my place at my brother's doctor visit, so I could attend the funeral, my little neice was upset and said, "Why didn't you tell me Kelby's mom was sick? I could have prayed for her." She has prayed so hard for my brother, even praying for him in her sleep. Quite the little prayer warrior.
Anyway, I seem to have gotten off topic, but I wanted to give you an update.
As always, you are each and everyone in our thoughts and prayers daily,
Tonya
Sister of 32 year-old oral cancer victim. Our battle is over but the war rages on. My brother passed July 26, 2005. He was a smokeless tobacco user.
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#44277 11-30-2004 09:17 AM | Joined: Dec 2003 Posts: 116 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Dec 2003 Posts: 116 | Thanks for the update and glad to hear some things are going well. We will all pray and send the positive vibs to help your brother. Please tell him our concern and support which may give him strength for the pain. That's wonderful about you niece and her concern and prayers.
SCC R-Tonsil T2 NO MO Dec 2003. Completed IMRT Radiation only to tonsils(72Gy) and neck(55Gy)March 04. Detected at age 50.
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#44278 12-02-2004 11:36 AM | Joined: Jun 2004 Posts: 85 Senior Member (75+ posts) | | Senior Member (75+ posts)
Joined: Jun 2004 Posts: 85 | Tonya,
Thank you for the update. Sometimes I am amazed how much we learn from the children. Tell your prayer warrior, that she is not the only one in the battle.
David
T1N0M0 Partial Glossectomy 2/04, Recurrance w/ another P.G. 5/04. IMRTx33 7/04-9/04. T2N2M0 recurrance in throat, 11/04.
2nd tumor 1/06/05, Chemo 1/11-05 Died 02-16-05 Wife: Brenda
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#44279 12-02-2004 01:51 PM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Dear Tonya
Sometimes it just seems that we are given so much more than we can handle and then " out of the mouth of babes".
Our thought are with you and your family .
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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#44280 12-02-2004 05:35 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Tonya, I for one think the radiolgist is wrong for telling anyone that he thinks your brother is terminal.
I am happy for the good news!
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#44281 12-02-2004 06:39 PM | 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 | Tonya,
I am so excited to hear some good news about your brother. I know it has been such a rough road for so long for him. I know you already have a brother but I don't know if he is your big brother so I am going to take a chance here. As tough as it is, do not let anger towards the bumbling fools (medical team) prevent you from being the rational one of the group. You have the knowledge, the intelligence and the wherewithall to steer things in any direction you want. If the won't see him in Houston, there are options here in Dallas, too.
Your brother is so fortunate to have you and you are so fortunate to have your little warrior. May miracles drop in your path and may your blessings continue.
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
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#44282 12-03-2004 07:28 AM | Joined: Sep 2004 Posts: 153 Gold Member (100+ posts) | | OP Gold Member (100+ posts)
Joined: Sep 2004 Posts: 153 | Thank you all. Your responses have given me the boost I needed, as I was beginning to tire of the rat race of the a medical system. You're right, Ed, there are other places than Houston and if that door won't open I will have to bang on another.
Thanks,
Tonya
Sister of 32 year-old oral cancer victim. Our battle is over but the war rages on. My brother passed July 26, 2005. He was a smokeless tobacco user.
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#44283 12-03-2004 08:11 AM | Joined: Sep 2002 Posts: 642 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2002 Posts: 642 | As a Houston native and MD Anderson patient I am offended that they spend millions advertising on T.V. and in magazines, telling us how wonderful they are, and yet make it difficult for people in need to obtain their services.
Brian explained to me that they want to keep good statistics to remain number one in their race with Sloan Kettering to be the best cancer hospital in the U.S., and therefore they turn down many difficult or apparently hopeless cases. At the same time it is difficult to turn on the T.V. or open a Newsweek without seeing their very slick ads.
Best of luck Tonya,
Danny G.
Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
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#44284 12-03-2004 01:56 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Hello Tonya,
Congradulations on the good news about your Brother. News like this picks everyone up. Kind of like balancing the scale if you will. I am also terminal but the chemo seems to be holding it at bay for now. I plan on being around for a long time. Wishing you and your family the best,
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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#44285 12-03-2004 06:15 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | I'm right there with Mark, I don't think the radiologist should be claiming he is terminal. Just my opinion.
I'm praying for you and your family, Tonya.
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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