I offer this note as hope for you all. My wife. a previous smoker was diagnosed with NSCLC stage IV/ Adeno in April 05. Her medical care team told me she had maybe 30-40 weeks, less if she didn't respond to treatment. It is now November and the orginal 5 x 8 cm tumor in her left lower lobe is all but gone! We walk about one mile nightly and her spirit is getting better. She isn't out of the woods, so to speek, but the aniexty of pending doom is waning. The cancer is in remission. I credit this to an agressive onoclogy team and prayers, prayers from you all here friends and family. I urge you, family and cancer patients to never give up, fight for your life and the lives of the ones we love. Ask questions, get answers you understand, research the new treatments and trials. And by no means suffer from the pain of Chemo, there are goods meds to help, ASK for them. There is no automatic offer, no protocol offered.
Sorry for this, get a good laxative, we found Polyethylene Glycol 3350, NF powder for solution, NDC 10572-810-03, this is a prescription required med, BUT IT WORKS better then anything we found.
My visits here have been slow, but I read your notes daily. I pray for you all daily as I am thankful for the time we have together.
WOW This is excellent news! I was just thinking about you two and hoping that the silence was not an indication of a worsening condition. Instead, now I feel injected with new hope for another remission for my husband who has been on Tarceva for one week. I have heard some very good things about it and am praying this will work better than the first line chemo did. We completed our move into our house and have been getting outside to work on the yard together and getting more excercise than we used to in our mobile home. Bud has established his music studio in our basement, and as I am typing this, he is fiddling with his speakers, mike, and various other gadjets (pardon my ignorance on this subject). He even had a couple of buds come down and jam with him for a couple of hours the other night and I know it did his morale a world of good (he sounds like Johnny Cash and does a great Elvis too). YEAH! We have a family get together tomorrow -- an early Thanksgiving -- with all of our grown kids and we will need to communicate to them the most recent developments. We hope to be able to do this in a manner that won't upset his youngest daughter (she's 21) who is very emotional as a whole.
I keep everyone here in my thoughts and daily prayers. Although it is really a sad thing that life has brought us to this place, I must thank God that we are here to help eachother through these difficult days, weeks, months, years. I have met so many wonderful people and truly miss stopping by here when my days get so busy that I don't get a chance to log on. As new people join us and as others leave us, it is my sincere hope that one day this terrible disease will be able to be caught so early in stage that the fight and therapies will allow for a complete cure.
Remission! What great words to hear. I am so glad that Bec is doing so well and will pray that others not now in a remission will soon join her as it is a good place to be. Jan, I do hope that Bud responds to the Tarceva as I have said many times my mom's lung tumor is all but gone since the Tarceva so when it works it can do great things. I think with the new drugs like Tarceva and Alimta out there the doctors are not really sure what to expect. Thursday is Thanksgiving and I know I am thankful that my Mom feels good so that she will enjoy it this year. Last year she had the pneumonia and UTI that made her feel rotten so while she joined us at my brother's house for Thanksgiving dinner she ate little and pretended to feel better then she really did so I am thrilled that this year she is back to being her old self and will enjoy the holidays. I thank god for everyday she is able to enjoy and pray that the Alimta continues to work its magic and with so few side effects too. It will be a hectic week coming up so if I do not post again in the next few days I want to say Have a Happy Thanksgiving to all of you. Enjoy your family and friends as they are what makes life important. Take a moment this Thanksgiving to tell them how much you love them. Best wishes to all of you and my continued prayers to you all in this battle. JanMarie
The time of remission is good, very good. But I think the change is coming, a couple of weeks ago Bec started to have headaches, of various degrees of severity, nothing regular, thank God!
She is still having lower back pain, mets at L-1,3,4 and 5, treated with Radiation back in April.
She has been getting an infusion q 3 weeks for 4 cycles so far, no better. The infusion was to help the bone strengthen and and grow,???. Now she is having bone pain in distal femurs, lower legs, R elbow and sometimes shoulders.
4th scan since end of chemo is tommorrow morning, chest and head scan is scheduled. I am uneasy about this one, I just worry alot.
You all have provided me strength and hope and I ask of you prayers, prayers for my wife. I pray the scan is negative and I prove to be a worry-wart, again. Thanks to you all, Ron
Ron, my prayers are with you my friend. You take Bec there and keep your chin up. Sometimes the symptoms are not the problems. I do not know how old she is, but as for myself at 46 trying to get all of the Christmas stuff up last weekend, I hope it is arthritis acting up in places newly healed. Keep in touch with us Ron. This is a tough time for so many of us. We can gain strength together and help eachother. God keep you and bless you and Bec.
Evening to you all, I have been holding back writing until we get more details.
Tonight I got a copy of the results and they aren't good. After a CT on Tuesday and a PET on Thursday, the cancer has returned to my wife Becky. She doesn't want to know the results until we see her Oncologist on Tuesday.
I had noticed suttle changes in her energy level and a cough.
With the weather changing here, she thought it was allergy and sinus.
Bec is scared as I am, I believe she knows in her heart the cancer is back.
I mentioned early on that Bec is one of three ER employees in addition to Peter Jennings diagonosed with cancer the same month. Bec is the only one left, the second person, Ollie Peebles passed away this past Tuesday early in the morning. Bec had spent several of Ollies last days talking with her while visiting her in the hospital. Bec is an incredible person and I love her. She has come a long way since April, on diagonsis they gave her only 30-40 weeks....Christmas. She made it and I thank God for this gift.
Merry Christmas to you all. Ron
Dear Ron and Bec, I am so sorry about the news. You both have been on my mind and even inquired if anyone had heard from you. My heart goes out to you and I know what you are going through, as I myself became aware of the subtle changes taking place with my Bud's health. Here the weather is turning cold and damp and prayed it was sinuses, bronchitis, even pneumonia. But, in my heart of hearts, I knew it was the cancer growing and it meant the Tarceva was not working. This was confirmed yesterday by his onc. All of the ground we had gained is lost and even worse.
We are here for you Ron. Will always keep you in my prayers and give Bec a big hug from her online fan club.
Thanks Jan, I am sorry for not responding to earlier posts by you guys.
During the short remission we had been getting out and enjoying the nice weather here in Savannah.
You mentioned Bud was taking Tarceva, this one of the few drugs previously discussed with Bec's Oncologist as a second round choice. I am concerned with your husband not responding to the treatment.
I guess they will do another bronch first.
By the way you inquired about Bec's age, she will be 52(12/27).
My prayers are with you all, Ron
Ron, as I understand it, the Tarceva is a 50/50 drug. It either really works or it really doesn't. My hubby's onc told us that in advace, but the reputation that came with the drug was a good one and we definitely wanted to give it a shot. Plus, it involved NO NEEDLES. This therapy might work very well for Bec and it is worth consideration. The way it works is that it inhibits the production of a hormone/chemical that the tumor cells NEED to grow on. In theory it is an excellent concept. I wish like heck it had workd for Bud. Now, we need to recoup a lot of lost ground. He's back to work this week and he is totally wiped out by the end of the day. He is depressed because he's not had a chance to go out and get me Christmas presents. I can't seem to get it through his thick skull that I have already received my gift and that is the fact he is here with me this Christmas. A month ago, I wondered. I cannot possibly think of anything worth more to me than that.
I read with concern and curiosity that Bec was among 3 ER workers that were dx with lung cancer. Is there a possibility that they were exposed to some carcinogens? That's a really high ratio.
Well, need to get ready for work. My computer has a virus and I was unable to reach this board for a day. I just wanted to tell you about the Tarceva and let everyone know I am praying for you and your loved ones. May our Lord give us the strength we need to get through each day and the ability to see his amazing grace in each new day that is gives to us with our loved one.
Merry Christmas to all and may you all find peace and Joy for these holidays.
Well, Bec and I met with her Onc, and he showed us the "hot" spot in her LLB, the site of her primary tumor. Bec is scheduled for bronc on 12/28 and another Onc visit to finalize the decision or start round two of chemo. The choices considered are Pemetrexed or Docetaxel. The Onc stated, by stats for her CA these two show the best results. No other details of dose or rounds were discussed.
Bec's first concern was, "Am I going to loose my hair again?" Of course she is thankful for the treatment!!
We have researched the meds, doses, adverse effects, and trial results, etc.
The other good news is that the CA in her lymph nodes and her spine did not show with the PET. Can anyone answer this question for me, Because the previous mentioned area were clear, does that mean the CA is gone for good or just remission for now?
I know I should ask her Doc, but he is always busy and you think of these things after. I did write them down for next time in his office or when I see him in the hospital.
Again, I DO think of you guys all the time. I pray for you, my firends. WE all must hang tough for our family and loved ones fighting this damn disease. Ron
Sometimes Ron words run short of what we wish to impart to others. I pray, oh my do I, that Becky's new chemo round does the trick. When you come out of remission, the whole world comes crashing down...for yourself and for those that love you and are your caregivers. So, each day again is a gift that we embrace wholeheartedly and wholly. May you be blessed with another remission and more months/years with your lovely Bec. Our loved ones are so special to us. I can barely stand the thought of being without my Bud. But, I know my/our time is running low and if weeks/months are allowed us, God bless it. I am soooooooo grateful. Ron, take Bec in your arms and love her and thank our Lord for another day with her. Walk your mile or half mile or quarter mile...whaterver she can do. Hold her hand and look into her eyes and wish for your fear to be replaced by hope and love and peace. Give her the strength to carry on, even though you know that afterwards you will be torn to pieces. But, for right now. Smile. Hug. Be her fortress. I know because I am that for my Bud. I keep getting up each morning thinking OK...this is another day that I am the rock. The pillar. So be it. Amen. And I compose myself and try harder to find inner strength. The granite that holds me up. The concrete wall that refuses to fall down. So my friend. Hold fast. I pray for you both and hold you up.
Thank you so much Rockie,
Your words are truly heart-felt. Bec has started her chemo, last Wednesday. Saturday the post-chemo pain began, she spent the next two days bedridden, yesterday she forced herself out of bed for awhile and was weak. Today she is ignoring the discomfort and roaming around the house directing me as I hang clothes outside(don't laugh guys).
The pain is almost as bad as the Carbo/Pacataxial round, but seems shorter in duration and intensity....thank GOD!
Our kids, 22 and 18 have started to ask questions again, the answers are hard to accept. They thought it was better but with the recurrence they too are scared. I have given them easy to read/understand books about NSCLC, 100 questions.
Bec talks openly about dying(to me) and knows she is buying time, the depression is obvious. Her Oncologist was not optomistic this time, told her to live each day.
She takes meds for just about everything to deal with this cancer. I have reviewed her meds with my daughter, she wants to help care for her Mother.
Thanks again to all and my God Bless each of you, Ron
Ron...no one here laughs at you for hanging laundry on the line as matter of fact we applaud you. I do just about everything that needs to be done around the house. I take care of all of the trash and the laundry and...all else. Sometimes I feel so alone because we are it...no one else around except for my short sighted son that refuses to see the empty trash can than could be moved to the back of the property. So, instead I find myself being wife, mother....stilll....and caregiver for his grown kids. I am soo sorry....for the twinge of bitterness..but, it is so easy to call once every couple of weeks to check on someone....and another to be actively involved in their care. You would do good to involve your children so that they can appreciate your struggle and your hard work.
Sometimes I worry that when my time comes and I am older, that no one will be here to help me and then what. But as long as I have control of my faculties....I will choose my end.
I sometimes wonder if that is not where my hubby is with things....where he still has some control. Am I cruel by watching this and trying to conrol? For his welfare?
You all take care and keep close in touch. God Bless each of us. Amen.
My name is Janet and I also have Stage IV nsclc. I was diagnosed originally back in June of '04. I had a lobe removed at that time and underwent a round of chemo. My last cat scan in December showed the cancer has spread to my lower spine, pelvice area and lobe on my right lung. It has been a whirlwind since that time. As a matter of fact, I just went to the drug store and dropped off my prescription for Tarceva. I did not realized I would have to wait a day to get it. I had been putting off starting it because I was scared. My question to you if you don't mind my asking is why did they not put your wife on Tarceva. It sounds to me like she and I are somewhat going through the same discomforts. I am always worried that my doctors will miss something. I am currently doing radiation to shrink the tumor by my spine because it is pressing against it and causing a lot of pain. This is a terrible disease and I am grateful that I found this board.
God bless you Janet and for what you are going through. I have read your posts and it never mentions you having someone else helping you with this. If you can forgive me for asking, do you know have anyone to help you at home? I read stories of people that have not been blessed with kids of their own where a niece or nephew or cousin have stepped in to assist. I hope this is the case with you. I don't think my hubby (and I am in no way bragging about myself here...argh...no way.. this is me a humble servant) could would have done this hadn't he someone riding him to get medical care (to begin with) and continue with it if he had chosen to do so initially. He is a very proud person and would not want to be seen as "weak" in any way. Janet, please keep in touch with us as I will now be thinking about you and hoping you are doing OK and praying for you. You hang tough girl and know KNOW we are rooting for you.
Hi Jan, That hanging out the clothes thing was for the guys, lol.
For you to care for your husband and his kids, your step kids, not willing to provide any assistance, bitterness is OK, some choice verbage would follow form me. I am blessed with a great support team, at work. At home, my kids have started to see changes in their Mother and they are scared and asking questions. I gave them a book on 100 questions I picked up at the Oncologists office and told them all the questions and answers are here. Of course I offer updates or answers when they are ready.
Janet, My wife was not offered Tarceva, she was a smoker. Surgery was not an option, she has mets to spine and lymph nodes. She received Carbo/Pacataxel for 6 rounds and enjoyed a partial remission for 3 months. Now the primary tumor is active again and she started docetaxel. She will be on this indefinitely. The Oncologist told her to live each day. I was told to expect the CA to progress rapidly now. I am scared for her and I watch her like a hawk for anything different.
Janet I pray for you as I do for all the rest of us here or those searching for this site. A friend to you all, God Bless----Ron W.
Ron, I too was a smoker up until the time I was diagnosed. That is why I was wondering why your wife was not offered Tarceva. My understanding is that Tarceva works best in females that never smoked but may also be of benefit to those who did smoke. I took my first pill last night and I will let all know how I make out.
I do have three wonderful kids; unfortunately two of them live in California. My daughter, Camille is flying in on the 21st to spend a few weeks with me. My youngest who is 22 still lives at home with me. He is not as supportive as I like him to be. I believe he is still trying to get a handle on this. The seriousness of this hit him a couple of weeks ago and he is dealing with it in his own way. Since then he has been withdrawn. My other son checks in daily with me by phone. I have wonderful siblings also. On my doctor's appointments someone is always with me. Day to day though I feel so alone in all of this. This is the place I come to because I feel a kinship.
I just want to say good luck with the Tarceva as I will pray that it does help you like it did my mom. Her lung tumor is gone and the lungs remain clear since the Tarceva. She quit taking it back in Aug when the liver mets started growing.( ERRR! Those darn liver mets). Because the lungs are clear at this time she does not have the shortness of breath or cough that most people with advanced lung cancer suffer with and that makes the world of difference in how she feels. And yes you are correct it can work for smokers too as I have met a few smokers that got good results. So hang in there and my prayers are with you in this battle. JanMarie