trishnmiller

What a great piece about your husband. I am devestated for your enormous loss. Prayers for you, Trish

Dear Kathi, Your Pop had a life filled with humor and love. You both are blessed to have had each other. Now, quit eating and get to work on the eulogy! Prayers, Trish

My friend and I call insensitive idiots like that nurse "Hamsters" because they get on their little wheels in life and run and run..totally tuned out to the world around them as they continue on their meaningless journey. That woman is clueless and truly not worth another moment of your time. Trish Don't let people rent space in your head for free.

My husand had 13 tumors removed from his brain in 3 seperate "sessions" of Gamma Knife. the 1st 8 were done after he had one round of Whole Brain Radiation. I would never have agreed to WBR but he needed something while we searched for a Doctor who would use the GK on that many tumors. Anyway, He had 8 done and then 5 more showed up a couple of months later so he had those done as well. Our doctor thinks nothing of it and has done as many as 40 tumors on one person! I hope your doctors will go ahead with the procedure. Keep us all posted! Trish

My husband's onc is weaning him off steroids. He went down from 8 mg to 1 mg over 6 months. Now he will be taking 1 mg every other day for the next two weeks as his body starts producing natural steroids again. Then he will cease completely. When a patient is taking steroids the body senses the chemicals and ceases its own production. This is why it must be done under a doctor's supervision. Best to you in your journey. Trish

Dear Mary, My husband is also living with stage IV nsclc. It has been 6 months and except for the first few weeks he has never missed a day of work unless he couldn't schedule his chemo around his days off. We live in a new world and many of the statistics that you read (and doctors quote) were compiled in an earlier day when there were very few options and much more guess work. Don't despair and don't think you have only a year to live! My husband had 13 mets to the brain alone and all were taken out with Gamma Knife which I know they offer at the Moffit Center. I'm glad you feel so well! Embrace your health and become a believer. Trish

My husband took Tarceva for 2 months and never got a rash and the drug didn't work so I guess there's something to the rash thing. Welcome, I'm glad you found us. Trish

We are all holding virtual hands with you in prayer for a successful surgery and speedy recovery. Talk to you when you get out! Trish

Because of my husbands remarkable response to Gamma Knife for the tumors in his brain we are certainly going after the met in his liver! Can't wait to say goodbye to that sucker too! We can't do his lung tumor because it is too close to his heart so we are relying on the chemo. If we could, we would! Trish

My husband is under the care of Dr. Aziak Wolf at Doctors Hospital in Miami, Fl. He has had Gamma Knife three times since January to remove a total of 13 brain tumors. If it hadn't been for Dr. Wolf and his willingness to use Gamma Knife on this large number of tumors (most doctors won't use it on patients who have more than 4 tumors) my husband would surely be dead. Three other oncologists and the radiologists they referred us to would only consider pallative whole brain radiation (which I refused because of the extreme side effects) and told us that he would slowly lose all function and probably die within 3 months. Well, today (six months later) he is totally lucid and still gainfully employed! He did have the halo and aside from having numbness on his scalp, no side effects at all except feeling well again! Trish

My husband is on Alimta now and it is the best respose we have had for his liver met which did not respond to previous chemo or Tarceva. His Oncologist told us that Tarceva only works for about 20% of the population and Jeffrey was obviously not in that group. The Alimta is doing the job for now. Best of luck with it. Trish

My husband was on Tarceva for 2 months with no response. The doctor has changed to Alitma and following cyberknife on his liver met he will probably add/replace with a cistplatin combo. You are in our prayers. Trish

Don't feel guilty! You give so much hope. My husbands case is very similar to yours. It's so wierd. He is in great health except for stage iv nsclc. He just keeps on keepin' on. Have a great vacation from everything! Trish

I will add you to my prayer chain. Trish

Welcome to our loving group. You are in the right place. We hold each other's virtual hands and walk through the good and bad times together. Visit all of the various forums and a new world will open up for you as it has for me and my darling husband. Trish

Dear Denise, My husband has recurrent brain tumors (13 so far)from nsclc IV. Every time he pops one out we go back to Gamma Knife. It has literally saved his life after we were given 1-3 months. Most importantly he hasn't had to deal with the side effects of whole brain radiation which I would not allow. We had to fight insurance and oncologists who were non believers but it was worth it to see him the way he is now, whole and working. We know it is not a cure but his quality of life since January has been remarkable. Best to your family and your mom during this difficult time. We used Dr. Wolf at Doctors Hospital in Miami, Fl. He will use Gamma Knife on any number of lesions unlike many other doctors. Trish

I can only wish for you the peace and blessings that come with knowing you helped him fight the good fight. He is at rest now. In love and prayer. Trish

Your story is my story too. Your husand is younger than mine but my children are 10 and 12. Although my husband came home sick today he has been working steadily for the last 6 months (after being told he had 1-3 months to live) so you never know. Today was just a bad stomach ache. We will all be praying for your husband. In the meantime don't forget to take care of yourself...it can get really hard to do that! Trish

Today is April 18, 2011. Once again I am writing during Holy Week because God is good. My husband remains cancer free. I haven't been on this forum in 2 years but Jeffrey ran into someone at a cancer benefit concert who was interested in his story. He asked me to send the gentleman this post so here I am, glad to continue to share his miracle. Bless all of you in your journey as you are a strength to everyone who struggles with you now and in the coming years as many more are counted among the long term survivors of "The Beast". Today is April 2, 2009 and as I prepare for Holy Week I have been thinking about all of the events of 4 years ago. Today my husband remains cancer free and is a working, loving productive individual. As you travel through your own personal hell with this I want you to understand that there are people who survive stage 4 NSCLC and my Jeffrey is one of them. On Friday he is having surgery for a hernia which got very large because none of us wanted to deal with hospitals again! We are grateful for the support of this forum. It was and is an enormous help. There was a time when we lived on these boards. I never thought we'd see "normal" again but here we are. Jeffrey's story Around Christmas time in December 2004 I began wondering what the hell was wrong with my husband. He was distant, ornery, and just generally awful. I repeatedly drilled him as to what was going on and he just kept saying that he didn't feel well. He went to our family doctorwho gave him Biaxin for an upper respiratory infection. He just kept getting worse and I started to suspect drug abuse because he works on South Beach and ...well, you know how it goes. Anyway, he got to the point where he was losing words for simple things. He would point and say "go get that,that,that...thing". I knew something awful was going on. Then on January 12, 2005 I brought home subs for dinner and he asked what it was and I told him it was an Italian Classic and then he said, "No, what is it..what am I suppose to do with it?" He didn't even know it was a sandwich! The next day I had my friends from the fire dept come and take him to the ER. Everyone thought he had had a stroke and was blaming me for not getting him in earlier. I kept trying to tell them there was no "event" just a progression of wierd behavior. They did a CT Scan and found the first tumors ( in his brain. I was struck dumb. I didn't even cry In fact I don't remember what I did except just sit there. He was admitted and during the next week there were MRIs and a liver biopsy and more scans. Ultimately his diagnosis was Stage 4 nsclc with mets to the brain and liver. The doctor gave him 1-3 months. He went on decadron for the swelling from the brain tumors and that helped him become much less "clouded" in his thinking. At least we were able to face this together with our children John 12 and Megan 10. I got our affairs in order, had him make a living will, got durable power of attorney and then I went on the internet to learn as much as I could about this new fact of our lives. I found out about Gamma Knife for the brain tumors but the first two radiologists refused to perform it on patients with more than 4 tumors. Then I found Dr. Aziak Wolf. We took Jeff's scans to him and he said "I can do that". The Gamma Knife surgery was performed on Feb 1 and 2, 2005. All 8 mets were done in two sessions. He was totally clear in his mind, felt great and returned to work. He also began chemo treatments which worked well on the primary lung tumor but not as well on the liver tumor. He then was switched to Tarceva. That was 2 months ago He will have a scan tomorrow to see if he needs to go back to chemo. In the meantime, he got 5 new tumors in the brain which we had Gamma Knifed out this morning. We are now prepping for cyberknife of the liver tumor but we need to get new scans before we absolutely go ahead with it. This is not a journey I would wish on my worst enemy but with the support of my friends,family, and church family we are not making it alone. Jeffrey is still working and still feeling great. We keep reminding ourselves that every day is one more than all of his many doctors (except Dr. Wolf) gave him and thank God that He had other plans.

Go ahead and scream. I'll be howling as well. My husband's MRI showed a new tumor this morning. he called to tell me on his way to a consult with the cyberknife oncologist...argghhh. Trish

I am so thankful to have found this site! On January 13, 2005 I had my friends at the Fire Station take Jeff to the hospital because he was becoming increasingly "odd". For days he couldn't remember simple words and his eyes looked like he was on drugs. I kept demanding to know what was happening and he just kept repeating that he didn't fell well. Actually this had been going on all through the Christmas Season. When I got the diagnosis that he had 8 brain tumors from nsclc and 1 met in the liver, I felt like Alice falling down the rabbit hole into cancer wonderland ...not a nice place. We have 2 kids: John,12 and Megan,10. I work full time and we have no living relatives in the area. I never had felt so overwhelmingly alone in my life. They told me he had 1-3 months to live and to get his affairs in order. I won't go into the whole saga right now but that was in January and now it's almost May. He is back at work and has been since the middle of February. We changed oncologists and protocols several times. I became agressive and pro active. This is as much my disease as his and we are fighting for our life. After months on the internet there is very little clinical information left for me to read. What I need now is to know what "real people" are doing with their situation and the results they have. Statistics are depressing and seem to have no connection to our personal reality. We rely on brains, hope, and Faith in God. Trish