Guest Codybug10 Posted December 31, 2003 Share Posted December 31, 2003 I don't know if I am in the right place here or not! My son age 39 was just told he has Adenocarcinoma. The primary is in his left lung, lower lobe. It is about 3/4 inch in size. It has spread to the liver. The liver is BAD. His oncologist will start Chemo tomorrow. There will be 3 medicines given: Gemzar, Taxol and Carboplatin. He will get thye one tomorrow and then again on January 7, 2004. He will be off for three weeks and go again. The day before Thanksgiving he started vomiting and he thouight he had the flu. When on the 16th of December he was still vomiting and it was getting worse, he took himself to the ER. They ran a blood test and a reading of 195H came up on a test if the liver. They ran a cat scan and marched in and told him he had cancer and it wasn't the primary. They put him on IV's for three days with pain meds and injections to settle his stomach. They sent him home and was told to call the cancer Dr on Monday. He was released on Saturday morning, but by Sunday evening he had dehydrated so bad he was passing out in the bathroom floor, where his girlfriend found him. He was taken back to ER and admitted. He stayed 6 days, and was sent home with oral meds on Saturday morning. Sunday morning he was again taken back to the Er dehydrated again. Today the biopsy report came back. "Poorly Differenciated Adenocarcinoma" The cancer Dr decided to start Chemo in the morning while still in the hospital, because the cancer on his liver was causing his vomiting and he couldn't send him home again right now. The Dr hasn't given us a stage. He did tell us this morning that only 30 to 35% respond to the Chemo. What will they do if this doesn't help? They have done a needle biopsy of the liver and a lung scan only. My sister-in-law is an RN and has been helping me to understand some of the terms here, but I am scared to death for my son. Your kids are not supposed to die before the parents! Can someone please help me? Quote Link to comment Share on other sites More sharing options...
jess Posted December 31, 2003 Share Posted December 31, 2003 Hi! Just wanted to tell you that you are in the right place!! I am fairly new to this site as well but I can tell you that the people on this site are amazing,caring,supportive, awesome people. You'll find tons of good information here. 39 is so young. My aunt is going through this and she is in her middle 40's. It is so scary but you'll find lots of support here. I'll be saying a prayer for you and your son. Jess Quote Link to comment Share on other sites More sharing options...
Donna G Posted December 31, 2003 Share Posted December 31, 2003 Glad you found us. Sorry you needed to. Lung Cancer is a very scary diagnosis to be given. I never had metastasis to the liver but many here have . I pray we can help you and you find the info and support you need. Donna G Quote Link to comment Share on other sites More sharing options...
ginnyde Posted December 31, 2003 Share Posted December 31, 2003 Codybug, My husband is currently being treated for liver mets. He has had 4 carboplatin/taxol chemos. A CT scan after the second chemo indicated that the chemo was working. He has since had 2 more chemos. He has another scan on 1/9 to see if it is still working. Our onc. has indicated that if the chemo stops working, he has other tools in his arsenal. The treatment is tough, no question. But my husband is willing to do this in the hopes that it will put him in remission. I can't stress how important it is to drink LOTS of water during chemo. You are right, parents should not outlive their children. But there are so many things happening in medicine today - we just hope all here are going to benefit. Stay with us. This group is many times my lifeline. Ginny Quote Link to comment Share on other sites More sharing options...
shirleyb Posted December 31, 2003 Share Posted December 31, 2003 I am so sorry you had to find this board. But I will be the loudest to say this is one of the best places to come to for support and information. It has been my place to find strength and stamina. If you have quesitons, normally not one but two or three will have answers. Stick around, *WE* will help you through this. I will keep your son in my prayers. Wishing you enough, Much love, Shirley Quote Link to comment Share on other sites More sharing options...
Hebbie Posted December 31, 2003 Share Posted December 31, 2003 I am so sorry to hear that you son is having to endure this battle, but as the others have said, you will find much support and answers to your questions here. I can't answer many questions regarding liver mets myself, but if you perform a search on the word "liver" on this site, you will find MANY post discussing various treatment options. I will be saying a prayer that your son's chemo regimen is successful for him and he hears the word "remission" very soon! Take care, Heather Quote Link to comment Share on other sites More sharing options...
Ry Posted December 31, 2003 Share Posted December 31, 2003 I am so sorry about your son, but want to echo the message above about him drinking lots and lots of fluids especially during chemo. Dehydration as you have already found out will make him very sick. We will all be here to answer any questions you have. Sit back and spend some time reading up on past posts here, I think you will learn a lot. Please send your son here also, he will find lots of people going through the same thing. All the best to you and your son~ Quote Link to comment Share on other sites More sharing options...
norme Posted December 31, 2003 Share Posted December 31, 2003 I to have a son who is 37 so I know how i would feel with that news. I also know that this is a great place to learn and to get strength to carry on each day. My husband has two mets to the liver. He is experiencing pain in that area also. He is scheduled to see the chemo onc again next week to see if he is strong enough to start more chemo. If not, then maybe Iressa will be tried on him. There also are clinicial trials that can be tried on our loved ones so even though he is sick right now, this cancer can make a 360 degree turnaround after chemo starts. You will hear on here that cancer is like a roller coaster ride, it goes up and down quiet often and our stress level goes with it when it goes up. Will keep both you and your son in my prayers.... Quote Link to comment Share on other sites More sharing options...
rinksgal Posted December 31, 2003 Share Posted December 31, 2003 My boyfriend just turned 50 last April and they found his cancer May 7. He had his upper rt lobe removed. He also has adenocarcinoma poorly differentiated. The others are right this will be a roller coaster ride.. There will be bad and good and the waiting..The waiting sometimes is the worse. Darrells cancer right now appears to be stable. He has some lesions on his liver, but they have yet to biopsy them to see if they are cancer or not. He also has several lymphnodes with cancer in them, his chemo and radiation shrunk them about 50% We get another ct scan in about 2 weeks. Right now he is feeling the best hes felt in months. We have been taking advantage of this. I haven't been on here much do to spending good quality time with him. My heart goes out to you and I pray that God will give you the strengthen. This isn't an easy ride..Some days I don't think I can do it, but I have to be strong for him..This message board has been there for me and they will be there for you too. Sometimes I just sound off when I feel like I'm losing control. So many people have given me such good advice and they will for you too..I wish you and your son the best of luck and I will be praying for both of you... Christy Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted December 31, 2003 Share Posted December 31, 2003 I'm sorry about your son's diagnoses. He is so young. Please look at www.blochcancer.org for more information. When my mother was first diagnosed with LC the first book I read was by Richard Bloch of (H&R Block) a cancer survivor, called Fighting Back. You can order one for free. I got tons of info. from it. My prayers are with you. Kim Quote Link to comment Share on other sites More sharing options...
DeanCarl Posted December 31, 2003 Share Posted December 31, 2003 First off let me welcome you to this place. I am REALY sorry you had to seek us out, but very glad you found us since you had too. I don't have any personal experience with liver mets so I'll leave that to those that have. I don't think there is a one of us that didn't get terrified when we first heard the word "cancer" from our doctors. And then we find that the disease we were dealing with had such poor statistics associated with it. The fear can be overwhelming. But it doesn't need to be. Remember, the statistics are an AVERAGE of ALL the people who've been diagnosed with lung cancer. Your son is not "all the people". He is an individual and, as I've found, each individual responds a bit differently to this illness and it's treatment. Because of that I've learned there's only one real way to deal with my illness. One step, one day at a time. Don't start playing the "what if" mind games. That's a quick way down a dark street and, when all is said and done, means nothing. It's a lot easier to deal with "what is" than with "what might be". It's tough to do at times, but it will make a big difference in your life and your son's life as you go through this. The other thing is to emphasize what Shirly said. There is NO POSSIBLE WAY I could deal with this disease alone. Having dealt with another disease in my life I knew, as soon as I was diagnosed, I had to get to a place where there were folks who knew what I was going through and were willing to share a part of themselves. That place is here. This path we are on is a tough one. There is no denying that. But I have found I don't have to walk it alone. WE walk this path. WE lean on each other when there is the need. WE cry together, laugh together and, most of all, love together. So please stay with us. And when your son is able have him drop by if he wants. Please let your son know I'm praying for him. And for you. Dean Quote Link to comment Share on other sites More sharing options...
Don Wood Posted December 31, 2003 Share Posted December 31, 2003 You are in the right place and most welcome. This is a good place for venting, info and support. Since your son has lung cancer in the liver (from your description), he would be Stage IV. Of course, you need to hear that from the oncologist. My wife is Stage IV with mets to the bones. You son is the age of my kids, so my heart goes out to you. Hang in there and let us know where we can help you. Blessings. Don Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted December 31, 2003 Share Posted December 31, 2003 Hello Codybug, I feel for you, writing in the silence of the night on a board you have stumbled across in your search to make sense of what is happening... There is no easy answer. Lots of questions, though. This is a good place to ask questions. This is a good place to find a hand to squeeze yours. This is a good place to find people who care, who know something about what you're going through, and who have many answers to questions and know many more places to look for answers. As a collective body, this group is awesome. I am so terribly sorry your son is ill. I hope and pray that you will find a good oncologist with a bag of treatment options which will help your son. We are here if you need us, and we're honored to help you. Know that you are in our prayers. MaryAnn Quote Link to comment Share on other sites More sharing options...
karen335 Posted January 1, 2004 Share Posted January 1, 2004 Hi Codybug, Sorry you have to be here. But you will find caring, compassionate, knowledgeable and loving people here. There is a lot of information to be found here. I don't have any experience with the liver mets, but there are outhers here that will be able to help you. This forum has really been so much support for me. I will be praying for you and your son. Peace and God Bless Karen Quote Link to comment Share on other sites More sharing options...
Guest Codybug10 Posted January 1, 2004 Share Posted January 1, 2004 Thanks to all for the comfort I have found here! Also for the prayers! David had his first Chemo yesterday in the hospital, because he can't stop the vomiting. He will have his second on the 7th. Onc will then do a CT Scan to see if any change. The Dr told us yesterday he is stage 4. They are trying to move him onto oral pain meds now, then will try to get him on oral nausea meds so he can return home. Davis has lost a lot of weight. He hasn't had a bowl movement for almost 3 weeks. David's girlfriend is a problem to him. She is telling him that "I am going to be so prowd to drive your Harley down the hi-way next spring" She is also asking his work for information about his 401K, telling his work she needs access to it, now. I have told her he needs to leave it alone as long as possible, because he will need it later for meds etc. She won't let up! Davids medical insurance will run out 30 Apr 2004. What do we do when all his oiptions for medical run out. Hos employer has told us that he can go on Cobra but that will be expensive and another reason we need to leave the 401K alone. When that is gone what? His father is on a fixed income for heart condition, but we will do without to make sure he gets the medical help he will need. Thanks June (Codybug10) Quote Link to comment Share on other sites More sharing options...
Debaroo Posted January 1, 2004 Share Posted January 1, 2004 I, also, am sorry that you need this site, but am very glad you found us. You might want to ask your sons doctors about a procedure called radiofrequancy ablation. There are many posts here about it-if you look up posts by John/Jonathan he has made several very detailed posts about it. It is a pretty non-invasive procedure that could be done on the liver. I had asked my fathers oncologist about it when we found out that he had liver mets, and he told us that it would be possible if we could get dads other mets (both lungs/and bone) under wraps. If your son has mets only to the liver, he might well be a candidate. You can even just go on a search engine (yahoo or whatever you prefer) and key in Radiofrequency Ablation, a bunch of helpful sites will be listed, then you can even look for treatment centers near where you live to see if your son can be seen by the doctors that use this procedure. The point is, there is alot of technology out there, and it is important to know your options. Keep us posted, and try not to get too overwhelmed with the information and the statistics-everyone responds to treatments differently! Please keep us posted, take care, deb Quote Link to comment Share on other sites More sharing options...
Fay A. Posted January 1, 2004 Share Posted January 1, 2004 Not trying to practice law without a licence, but perhaps you can approach your son about obtaining a medical and general power of attorney for you to act on his behalf while he is temporarily incapacitated. I think your assessment of the girlfriend as a potential problem is correct. Threatening to ride off on his Harley next Spring is not a motivant...it's an irritant. And not what he needs right now. I'm sorry you had to find us, Codybug, but glad you did. Wishing you and your son good luck in the journey ahead. Start looking for info on Radiofrequency Abalation to treat liver mets. Some have had good luck with this procedure. Best Wishes, Fay A. Quote Link to comment Share on other sites More sharing options...
Sam'swifeShirley Posted January 1, 2004 Share Posted January 1, 2004 I'm so sorry to hear about you son. This is such a horrible disease we share. Finances can get so complicated. I'm not an accountant or a lawyer but know a few things and am happy to give opinions. As best I know, the girlfriend has no right to your son's 401-K at all unless he dies and she is the named beneficiary. He can access it without penalty (pays regular income tax) if disabled (which he is obivously). Yes, Cobra is expensive but may be his only option for any insurance coverage so don't rule it out as a possibility. I assume that he has no disability insurance coverage at work, be sure. Social Security disability is available after six months of disability but it's certainly not too soon to start looking into that either. You did not say whether your son has children but from what you do say about the girlfriend, well, I know that it's very hard for you and your son to think about but you should encourage him to have an up to date will and Health care POA, advanced medical directives, living will, etc drawn up and then hope and pray that you never need any of them. I pray that your son has an excellent response to the chemo. Sam[/u] Quote Link to comment Share on other sites More sharing options...
DeanCarl Posted January 1, 2004 Share Posted January 1, 2004 June, I don't know where you're located at, but I was able to get on State Disability here in a matter of a couple of weeks. It's not a lot and it doesn't last forever (in California it's about a year) but it's enough to hold me over until I can get something more permenent. The hospital where your son is at should have social workers who can help you out with that kind of information. The first step is to get a doctor to say, on paper, that your son is disabled. That opens up a lot of doors for you and your son. Including Social Security and Medical. It's a pain in the neck with the paper work and it can take some time, so the sooner you get started the better. Same with the power of attorney. Get that going right away. With that you can protect your son if he is unable to protect himself. I know (believe me .. I KNOW!) this stuff is so hard to think about when what you realy want is your son healthy and happy again. But it realy needs to be done. Once it IS done it's one more stress gone. Dean Quote Link to comment Share on other sites More sharing options...
norme Posted January 1, 2004 Share Posted January 1, 2004 You have just been given some very good advice by Sam and Dean. Try and follow through with it immediately. Talk with your son, you should be able to have an attorney come to the hospital to conduct this business for I had to have that done not to long ago for a relative. Your son's employer should not be answering any questions to the girlfriend without your son's approval. There is such a thing call THE PRIVACY ACT. People cannot give out info without the person's approval. I know this is very hard on both you and your husband to have a son so sick right now. Hopefully the Good Lord with help your son overcome this bad point and get him back on the road to fight this disease. Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted January 2, 2004 Share Posted January 2, 2004 You have been given a lot of good advice. Here is a website that has information about rfa surgery for the lung. The technique was developed for liver cancer and has a longer history dealing with it. We have been looking into the lung version for my wife. Anyway, the site is http://www.rfalung.com/ I would encourage you to take advantage of COBRA; it has been a while since I dealt with that specifically, but I believe it is possible to purchase it for up to 18 months, so that would get you almost through 2005. It is expensive, to be sure, but the medical bills are unbelievable for chemo, radiation, surgery, medicine, etc. Finally, your son's youth is an asset. My wife was diagnosed three weeks after her 30th birthday. And while the treatments have been rough, she has constantly amazed the doctors by recovering from them quickly. She is still able to teach full time despite two different kinds of chemo, six weeks of radiation, and a major surgery. There is always hope. There is no level of cancer out there so advanced that cure is impossible. Try to find a blessing in each day. That is something I try to do each night before sleep. Cancer is a horrible disease, but our fight has brought our families closer together, strengthened our relationship in some ways (though we are often snippy at each other too because of the stress). Best wishes. Curtis Quote Link to comment Share on other sites More sharing options...
Cindy RN Posted January 3, 2004 Share Posted January 3, 2004 It is so hard to think of all the things a person has to do PLUS worry abiout the cancer. FIRST_If you are close with your son, see if he will come to your house to recoup after discharge from the hospital. Then talk with him about POA etc. A single person needs to have a close relative totake care of this. NOT a girlfriend. Prayers are with you. Love Cindy Quote Link to comment Share on other sites More sharing options...
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