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
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.
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
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
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!
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
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
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.
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
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
Thanks again. I whole heartedly agree with you, Danny G., it feels like they are saying, "You aren't important enough to waste our time on" each time they turn you away. My brother has great insurance, so the money issue is not the problem. We are hoping to hear from them today or tomorrow. At first I was excited, because surely now that he has a fighting chance they will take him. But I was disheartened to see a post from Danny Boy about them not taking him because he was improving where he was. Is this still the situation Danny Boy? I hope you have managed to break the code and get in. Meanwhile, Danny G. mention Sloan Kettering. What other "breaking edge" centers can anyone recommend?
Thanks,
Tonya
Just a thought: Maybe what Anderson Cancer center is saying is "You are getting the best treatment we know of where you are right now," or "You are getting state of the art treatment." I know little about Anderson and I only offer this because there are wonderful doctors who keep up on the latest developments in their field and they may be able to offer the most recent, state-of-the-art treatment. Any new trials of experimental drugs are probably targeting certain people, for example those who are Stage III but not Stage IV with tonsil cancer. Tonya's brother may not fit their research protocol. This doesn't make him any less important as a human being.
I offer this speculation because I suspect that even the big cancer centers don't have answers for all the difficult, likely-to-be terminal cases. Even with great insurance they may not be able to do anything more than his current doctors. - Candace
Candace,
I'm not saying they should take him because he has good insurance, just that there is not a financial reason for them to turn him away, so it must be medical or some other reason. Originally his doctor said, "We're doing everything for him here that they can do in Houston." In fact, he said it several times. Now that David has responded so well the same doctor said, "You need to go to Houston. They're five years ahead of us down there." Hence the frustration. My brother just wants a second opinion and his doctor said if he was going anywhere to go to Houston. David said even if MD Anderson had been the ones to give the original diagnosis he would want to seek a second opinion somewhere. Anyway, maybe we will have our answer soon.
Tonya, if MD Anderson doesn't work out, you might want to try the Sylvester Comprehensive Cancer Center in Miami. I was treated there as a Stage IV patient and have been given a clean bill of health, at least so far (less than a year). Tower is being treated there now and it is a first rate cancer treatment center. There is also free rooms available at the center, just a short walk from the radiation treatment department. Check with the social services department. Pray it will all work out for you.
Tonya,
I know I mention the Simmons Comprehensive Cancer Center at University of Texas Southwestern Medical School here in Dallas but I want to add a new plug. Yesterday it was announced on the news that they are completing the process of becoming a National Comprehensive Cancer Network member! Many of the doctors were previously at MD Anderson which is also part of the University of Texas system. I would be glad to do anything to help make it happen and I would certainly be willing to go with y'all if it helps. I know we are as close as anywhere in the country for you.
Ed
Tonya,
this is precisely why we always recommend to people here to seek out a comprehensive cancer center initially. I hate hearing stuff like "They're five years ahead of us down there". That "five years" is a world of difference in the state of the art perspective on curative methodology. We need every weapon in the arsenal for this fight.
This is not meant to be critical of the path you took, only to emphasize to others why seeking the best possible treatment should be strongly considered in the very beginning.
Here are 2 resources for comprehensive cancer centers nationwide:
http://cis.nci.nih.gov/fact/1_2.htm http://www.nccn.org/
Kirk,
Thank you for the recommendation. I will visit their website and check it out.
Ed,
Thank you. I may be calling on you. I spoke with Houston this morning and they finally have all the test results needed and are sending them over to a doctor to look at. Cross you fingers. If we can't get in I will definately be contacting you.
Gary,
I did not take your comments as crital. I wanted him at a better place from the get-go, but after being cautioned by the nursed and doctors to let he and his wife make the decisions I backed off.
To anyone just diagnosed with oral cancer - please get to a solid cancer center now - before you have any radiation, chemo or surgery. It seems almost impossible to get in after receiving treatment elsewhere. It may be further to travel, less convenient and even more expensive if you don't know anyone to stay with- but push that aside. This is your life and you cannot limit it by compromising your medical care - no matter how much you try to rationalize it, like we did.
Update:
MD Anderson called late Thursday and will see David tomorrow (Tuesday). We are flying down today. I can't explain the emotions I'm feeling right now. Relief, excitement, sadness, everything at once. Wish us luck!
Tonya
Tonya,
WOOHOO! I am hoping some new and more experienced eyes reviewing everything and seeing David will give him the best possible treatment plan to battle this beast. I will be thinking of him on Tuesday especially.
Ed
Tonya,
I'm with Ed, and wish David not just luck but all the positive vibes that we can send his way.
Peace
Jack
..........
Dx 1/15/97 SCC rt. tonsil met to rt lymph node Stg IV,
Srgry 1/23/97 tonsillectomy & mod radical neck dissection,
Radiation 35 trtmnts both sides
Thank you both so much. We have arrived back home. David has a great deal of pain on the right side of his tongue that the previous doctors thought was an infection. MD Anderson did several tests Tuesday and we don't have the results yet, but the doctor said it looked and felt like cancer. So, while the surgery is not set in stone yet, the doctors are basically sure that will be the next move and hope to have it done by the end of the year, if they can coordinate schedules with the plastic surgeon. The doctor said alot of the time it is too late when people who have had chemo and radiation come to him, but he thought they might still be able to help David. David returns to Houston on Tuesday. I'm sure we will know more at that point since the tests results will be in and the doctors did not want to get too ahead of themselves talking about the surgery details yet. They said he would be in the hospital for 7-10 days and he would need to remain nearby for an additional 10 days. I'm sure my parents will be there and his wife and daughter so I'm now searching for some type of reasonable housing and airfare. Any tips are appreciated.
I am so greatful for this site and the unique perspective of patients who have been through the surgery so we have an idea of what to expect - though I have a feeling even armed with knowledge it will more of a challenge than we can even imagine at this point. I also appreciate any insight on the surgery - like average recovery length, etc. We did meet many wonderful people there and many shared their stories of miracles and that gives us hope.
I wish you all the best and you remain in our thoughts.
Tonya
Tonya, glad things have gone well and Anderson is working with David. My cancer was in the tonsils, so I can't help with tongue issues, but I'm sure it will go as well as possible as the doctors at Anderson have a very good reputation. You, David and your family are in my prayers.