Inherited t790m mutation - 1245323

Dr. West: thank you for your response. My personal guess is that the t790m mutation may be less rare when additional identifications and discoveries are made. But the good thing is that gene testing is fast making inroads toward some of cancers mysteries, and hopefully toward cancer cures. In view of my family cancer history, I have long held a personal belief that my family had, or has, a propensity to cancer. Inherited, environmental, or more likely a combination of both. Our gene pool is the same and for at least a portion of our lives, our environment was similar. My sisters have preceded me in death by cancer, so unfortunately they can't be tested, but in what I hope is a step forward for our next generation, our children will be tested. So, if there is a happy side to having cancer, it is being involved in what may be a part of cutting edge cancer discoveries. I am very lucky that Dr. Carbone, of Vanderbilt, was interested in t790m mutations when our paths crossed. I think your web site also holds the potential for further discoveries as doctors and patients share thoughts, feelings, procedures, tests, clinical trials,, and discoveries at your Internet accessible format. Thank you for this contribution. I will be watching this site for further t790m information, as more becomes available.

To Cosmo 72 and Certain Spring. Thank you for your input. I hope you are dong well with your treatments.
I am in contact with Harvard re the Dana-Farber research into the t790m mutation. One of my tumors also has an L858R mutation. Should be interesting. They expect to be up and running in several months and we will be in touch. I hope that my case can provide a contribution. Dr. Carbone is part of this collaboration. They expect to be able to do gene testing by mail and counseling by phone. A giant step forward in cancer research.which should open a lot of doors to a broader range of doctors and patients.
In the meantime, I am still on Letrozol for breast cancer. No doubt, Letrozol has saved my life, which, by the way, i located on the internet in 2001. I am lucky in that I feel good and still have good air supply in spite of the fact that my lungs are quite full of cancer, and have been, since 2001 when I was told that I had one year to live. Doctors dont know what to make of me. I think my almost daily dog walks are a great help. My dog and cats make me smile, and I think Happy is the best medicine.
Take care. Be pro-active! Every day, do something that makes you Happy, even if it is just having cookies and milk! Keep in touch. I am always looking for answers and treatments.

Certain Spring. Cats are great! Independent, smart, and resilient just like us! I have three rescue cats. One was pitched out on the street when a kitten and in looking for food, came upon an outside dog with a food bowl. When I first saw her, she was screaming bloody murder at that dog bowl. How could I not bring her home? She tends to think she is a dog, turning on her back for a tummy rub. My daughter did a double take when Izzy rolled over. She wasnt about to give izzy a tummy rub and lose a hand to cat claws, until I told her, she thinks she's a dog. Loves tummy rubs. And Bitty Bob, my first, born with a half tail. Unwanted. Tiny. Vet didnt think he'd live. Bottle fed him. He slept on my chest. Now, he's a big black 18 pounder that still likes to crawl up on my chest. How can I not smile? I hope you can get a rescue cat. They are so grateful. Just like us.

Update on t790m mutation. Online with the discovery that I have this inherited gene mutation, my daughter has now been tested at Stanford, and it is determined that she, too, has inherited this mutation. Am now making arrangements to have sons undergo genetic counseling and the test. My daughter will now undergo CT screening, and hopefully she will be lung cancer free, and will continue monitoring. I am presently in a holding situation and will be receiving another CT to check status of more troublesome tumor. Am told a new drug is in the works that may be of benefit to me. Hope so. In the meantime I stool feel pretty good.

Hi, again. I've been out of the loop for awhile. Calliem3, so sorry to here of your dads diagnosis. I am sure that you have been advised to have the gene tests completed, as with your family history, you certainly sound like a candidate. My gene test was done at Vanderbilt, and it was determined that I carry the T790M gene mutation. My daughter was subsequently tested at Stanford. She has the gene and then a baseline low-level CT was done. The CT turned out not to be baseline, but instead indicated she had lung nodules. She is 50. On January 4 she underwent surgery to remove the larger od the tumors. The subsequent biopsy indicates that the removed tumor was pre-cancerous. She will continue to have periodic CTs to monitor her remaining nodules, which at this time are too small to treat. So some good has come from my diagnosis in that her early detection has probably saved her life. I see this as the future of at least some lung cancers. I have recently completed a round of radiation therapy on my more problematic tumor. Do not yet have results. Hope it helped. My daughter, and I, have joined the Registry now being formed by Harvard and Dana-Farber to further research the T790M mutation. I do not know if the Registry is limited to just this mutation. Your family certainly seems to be candidates to join the Registry. (see contact information above). My son is presently out of the country, however upon his return, he will be in contact with Dana-Farber, and they will handle his gene testing and counseling by mail. Sadly, my son John, died October 21st, suddenly of what was determined to be a massive heart attack. He had been feeling bad for several days with what seemed to be a really bad cold, and then he just collapsed and died. He suffered from Paranoid Schitzophrenia and had a very difficult life. There again, a possible inherited gene from his dads mother. Good luck.

Thank you all for kind words. It has been a difficult time and your words are comforting.

Callie. I live in Huntsville, Al. So when my tumors were deemed large enough to test and the mutations showed up when the biopsy was done, it was unknown just what that meant. My local oncologist wanted to start me on chemo, I thought it a good idea to get a 2nd opinion before doing so. He called Dr. David Carbone at Vanderbilt and it just so happened that Dr. Carbone was very interested in my mutation. I saw him two days later, and he felt that I possibly had a germ line mutation. After the required counseling was done, testing was completed, another biopsy undertaken at Vanderbilt. It was determined that chemo would not help me. As it is known that this mutation is resistant to the currently available drug cocktails. Dr. Carbone had me consult with the radiologist at Vanderbilt. It was recommended that I have radiation therapy on my more troublesome tumor pressing on my windpipe. It was determined this could be done in Huntsville. Dr. Carbone has relocated to Ohio State but I, and my daughter, are in contact with him. Dr. Carbone is also involved in the Dana-Farber research. Presently, trials for new drug combinations for the t790m mutation are taking place. I elected to try the radiation for now. My next doctor appt is Feb 12 and guess I'll find out if the CT shows any improvement from radiation. I know how lonely you feel. I was reaching out when I contacted this site in the hope that there would be someone I could connect with. I was faced with a lot of nay-Sayers (including doctors) when I spoke of inherited mutation. I feel very lucky that I connected with Dr. Carbone. It is still unknown whether, or not, I also have breast cancer in my lungs, for which I have been treating with Letrozole since 2001, when I was diagnosed as Stage IV breast .cancer to my lungs. I now feel lucky to have connected with you. Where do you live?

Lay a,. Thank you for your kind words. I am sorry that you are going through the loss of a loved one, also. John was 51, and his death was totally unexpected. But no matter when, or why, it is not easy. I, too, am heartbroken. Thank you.

Cal lie, I have responded to your e-mail. I think Grace only wants to protect our privacy. I don't believe they would object to voluntary commucations. We can also continue to update our information here in an effort to reach others. As I've said before, this site allows us to reach out to cancer patients, caregivers, and medical persons in an effort to gain knowledge and perhaps make progress in each of our situations. I really appreciate ithat it is available to us. return to the doctor February 12 and hope to find out the CT results.

Thank you catdander. You, Callie, and I are quite close. Small world. Not feeling so lonely. Not too "thread" literate. What is the advantage of moving the conversation? I want to be where I am more easily found with the t790m heading. Would that change?

Dr. West
Looking forward to Oxnard Podcast. Curious to learn how the Registry is going. Also, could you inquire if they are perhaps going to do any DNA research to determine if we t790m mutants may have DNA ancestry in common. Thank you.

Had an interview with Dana-Farber researcher this afternoon re family history. Asked if they had any plans to possibly identify similar DNA family originations. No plans, but thought an interesting question. Seems to me that is the question.

After 18 rounds of radiation completed in December 2012 directed at one lung tumor, and most recent CT scan completed in January, I am said to be "stable" with slow growing tumors. Next scan a PET scheduled may 1. My daughter has returned to work and is recovering from her lung cancer surgery. My son will be back in the country late February, and will undergo DNA germ line T790M screening upon his return.

My son received his test package from the Dana-Farber Harvard T790M research team. He swabbed his cheek as instructed, and returned the package. He has been identified to also carry the gene. They will mail him a blood test package to confirm this finding. After further confirmation, he will have a CT scan. He has children. No plans have yet been identified for testing the third generation.

I have been in contact with CallieM3. Her father tested positive for the T790M gene mutation at Vanderbilt. She plans on getting tested for the gene and a baseline CT.

Hi Catdander and Certain Spring.
Had my follow-up appointment with my Radiologist on Monday. My May 1 Pet analysis indicates that I am stable. No indication of any other activity outside the lungs. That is good news. I feel good. Am pretty active. I do tire easily, but as I tell my doctor, I figure the aches and pains are normal as I am OLD.

My daughter and I were interviewed last Friday by a reporter from an Oncology magazine. Dr. Carbone (now at Ohio State), who first diagnosed my Inherited T790M Mutation, is working with the Dana-Farber Harvard Research Team in conjunction with the Bonnie Addario Lung Cancer Foundation. They are trying to broaden the knowledge of the T790M mutation and the importance of Molecular testing and targeted treatments and that one size doesn't fit all any more. Sites such as this Grace Site are invaluable in pulling us all together to share, support, and learn from each other. Doctors and Patients. My best regards to you all.