I am afraid I have some bad news to share with all of you. My mom had her CT last week and we see the doctor on Wed. to go over it:However he called her today to tell her it is not good the liver mets are getting worse and her CEA is over 300 .He said on Wed he will discuss more chemo or stopping treatment but she can not remember which chemo as I think she was so shocked by the news. She has been feeling great so figured the CT results would support that but that is not the case.
I am home in Santa Barbara having just finished my 3 -12 hr night shifts. I got up to find the E-mail from my mom. I feel so very bad that she was home alone when he called as my dad was at work and still is as I write this thus he probably does not know yet( yes at 81 despite some dementia he still goes into work doesn't do alot but goes in as he owns a business that my brother now runs).
I can tell by the E-mail that the fact she is not going to survive this has finally hit home for my mom. The safe world of denial stripped away by a phone call. She said she is not sure if she wants to go through yet more chemo as I guess he warned her it would not be an easy one.
When it is not going to save your life. Do you spend what time you have left chemo free enjoying what good days you have until liver failure sets in or do you do chemo and end up possibly not feeling so well to buy a few more weeks or months and risk the chance that you may die on this chemo?
I know my mom is going to look at me for the answer which I do not have.I want her here as long as possible but I do not want to see her fatigued sitting around saying why am I doing this? My mom is an active person so hated not being able to do anything when the fatigue of the first chemo Carboplatin and Taxol set in. I am glad this last year was not like that period. I know I should be thankful for this past year and I am but I am also selfish and don't want to have her die. Funny we all know we will probably outlive our parents as that is how life is suppose to go yet when the time comes it is no easier knowing that.
I have been crying buckets as I know liver mets are next to impossible to stop but I just do not know what to tell her. It will be difficult to see my mom who has been so willing to do battle with her cancer decide to stop and let it win, but is the battle now worth it when the liver is so involved and the cancer will win in the end?
I try to think of all the things I have to be thankful for such as the fact that I am lucky to have such a wonderful mother and to have such a close bond to her. My two sisters never had that bond they have never really known her as a friend like I do as they moved away and do not see her often so to them the memories will be of a mother but to me they will be so much more. I am thankful that she was so willing to battle this cancer and that God gave us this great past year. I am thankful that she has been so strong and pray that I be as strong as she is.
I had seen the copy of the CT we had them make us and hoped it was at least stable but knew it probably was not better so I had a feeling it would be bad news. Then all weekend at work God decided to throw end stage cancer patients in my face along with some grieving family and I thought is he telling me something? There was one man who probably will be dead in a day or two and his family was all there in agony. I apologized to him for having to poke him with a needle to get some arterial blood and he gave me a big grin letting me know it was ok and I nearly lost it, then one daughter said " it must be hard for you so see families in such pain and agony'" and for once I could not answer and had to just walk out with my blood sample and when I got to the privacy of our blood gas lab I just broke down as I knew that would soon be my family and that little did his daughter realize she and I were standing in the same boat she was just in it earlier than I.
I can no longer see the key board to type so I ask you all to please say an extra prayer for my mom tonight I guess that what ever her decision is it will be the right one. I had a dog with cancer and my dear sweet vet told me that from that day foreward there would be no wrong decision as when to put her down. that the dog would know when it was time and let me know and she did.When I waffled on my decision hours before the vet appointment my dog went suddenly into congestive heart failure and was almost gone before I got her to the vet. It was her way of telling my yes it is time I must leave.No she had not suffered as she had been fine but that morning would not eat and gave me a look that said it is time I got past my selfish wants and listened to her. Now I have to do it again for my mom and it will be so much harder.
Thanks for understanding as I know you are the only ones among my friends that do understand the price of having a loved one with lung cancer. My prayers go out to all of you. JanMarie
Oh how I can relate to what your feeling.My mom got her results of mri back today and they found it has gone to her spine.The sacrum which he says is unusual.The treatment-radiation-again.As you describe your mom it reminds me of how my mom is.Such a fighter,so full of life and not wanting to give up,but to hear it has once again spread-devastating!They have her set up for a pet scan Friday to see if it is anywhere else.He mentioned the liver.I am so scared for her.My brothers and sister know her as a mom like you had mentioned,they live out of town.My mom and I have always had a special bond.She lives a couple houses down from me,but I believe she is going to have to move in with us being her cancer is progressing.I dont want her alone,as she is widowed.You said your mother has liver mets,Can they do chemo for that?I know he said my moms as of today is showing as multiple lesions in the sacrum and thats considered CNS metastases so there is no chemo for that.If her pet scan shows it in the liver I was wondering if they can do chemo.I didnt ask that question today as we were dealing with eveything else.
I will keep your mom in my prayers and whether she decides to do chemo or not keep your faith.
I am sorry for the news, words can not express enough sorrow to relieve your pain. I pray for comfort and peace in whatever decision you and your family come to. May God Bless you and your family. Ron
JanMarie, my heart goes out to your Mom, you and your family. I pray for peace for each of you and healing. Just know that so many are thinking of you all each day. God bless all of you on these boards. There are so many and it is so overwhelming sometimes.
I want to thank you all for your prayers. I got up this AM after a sleepless night checked this web site and read your posts and they helped me calm myself enough to make the 120 mile trip back to my mom's house. It was one of those trips where I do not remember going through Ventura or Hollywood but rather suddenly found myself getting off the freeway in Orange County. If you know Southern California freeways at all it is a bit frightening to think you drove 120 miles and can't remember passing through major cities!
Tomorrow we see the doctor and discuss options so I will spend the evening doing yet more research. The good news is my mom still looks and feels great and does not have any abdominal discomfort or signs of liver involvement just that increasing CEA and CT scan saying the liver mets are misbehaving again. I feel much stronger being here and actually seeing her and her attitude is still positive so maybe she will be willing to continue this battle awhile longer.
Serinity, yes you and I do have alot in common and it is nice that we both have been lucky enough to know our mothers as not just a mother but a friend. I know alot of people that do not have that bond with their mother including my two sisters and find it rather sad. You and I will always carry such fond memories of our mothers in our hearts. You and your mom are both in my prayers.
Ron, I am sorry to hear that Bec had a few rough days but hopefully she has more good days then bad, know you two are always in my thoughts and prayers.
Pat, I recall you too were getting scan results and I pray it was good news again.
Specialbabies, Thanks for the internet hug! I hope you all realize how much just having your support helps as I know all of you understand the ups and downs of the journey. It is sad to think it is with such sorrowful reasons that we find ourselves bonded.
I did call my best friend yesterday and while she listened and offered support and I love her for it I can tell she is uncomfortable and not sure what she should say and I understand that as her parents are 85 and active and healthy as are her other family members so she has yet to walk this path.
Next I called my oldest sister who is a 10 yr breast cancer survivor and she told me she had just had a breast biopsey but thank god it came back normal. She did tell me that my other sister that lives near her will be having a breast biopsey this week, which I did not know as I am sure she thinks I have enough to deal with since I am the one helping my parents.I worry as she and her husband have been under extreme stress from dealing with a daughter with major issues for the past several years. So maybe you could all add a prayer that she too gets negative results.
I thank you all for the support as it helped me get back on solid ground and has me ready to face what tomorrow's visit with the doctor brings, Thanks and God bless you all. JanMarie
We just got home from the doctors and my mom has decided to continue her fight as she is just not ready to say she has had enough yet. She will take next week off then start weekly chemo of Taxotere and Gemzar. She will loose her hair again which she is not looking foreward too but has accepted.
I know some of you or your loved ones are on Taxotere and some on combos of it with a second agent so would like to know what your experiences have been ?
The CT is as I thought the only sign of the cancer remains in the liver, some of the mets have grown larger and there are some new ones . The lung tumor is gone thou he says it could always come back in the lungs but for now the Tarceva seems to have wiped it out. Too bad it didn't do the same with the liver mets( it started to but then quit doing so).
I did bring up RFA but he feels in her case it is not a good idea so says if she wants he could send her to see someone that does it but that he himself could not endorse it in her case. He has seen a few people with side effects like a lady that they accidently punctured her diaphragm and almost killed her and because he had encouraged her to get it as she only had one liver met he then felt quilty about it and does not want that guilt with my mom should something happen when he feels it would be of little benefit to her. ( that is why earlier I wanted cyberknife as the risks are less yet the Kaiser doctor he sent us too claimed that RFA worked just as well and had very few risks so now it is who do you believe?) I think Kaiser needs to have a tumor board like some places do where they all get together and throw what they have to offer on the table and decided which is in the patient's best interest. Rather then having a doctor that only specializes in chemo making the decisons. ERRRRR!
He kept saying if it was only in her liver he might be willing to agree that it would be best and when I said well it is gone in the lung his reply was yes but it could come back. I don't quite get that as yes it could come back maybe in a month maybe in a year or two but in the mean time her big threat will be liver failure so if you could prevent that from happening by killing the mets be it RFA or cyberknife isn't it worth it as in the mean time maybe some clinical trial will show some drug that really does wipe out the cancer.And at the very least it could buy more time. It is so frustrating to me!
It was very busy there and I no doubt put him way behind as our conversation was long and for the first time since meeting him I think he sees my mom as a person and wants what is best for her so really believes it is just the chemo but he did very quickly this time say that his knowledge of other things like RFA and cyberknife is very limited. I admire that this time he at least seemed human and was willing to discuss these issues with me and was not looking at his watch! Its a break through for us.
So for now it is back to the chemo and with any luck maybe it will get rid of some of the mets and stop growth of the others .
Thanks again for all of your support as you guys are all the best and because of you I feel I am at the moment back on stable ground. God bless you all. JanMarie
JanMarie, I am so glad your Mom decided to keep fighting. Thank you for remembering that I got results of my scan Monday. It is still clean. I had already decided I would do more, and any kind, of chemo but would think long and hard before doing more radiation. My only problems were from the radiation but of course if and when that time comes I might think differently. I am so thankful for each day now. You, your Mom and family are in my prayers. There are so many here who are fighting for their lives and I have a hard time remembering names and exact situations but just know that I know the score on the hateful disease and am pulling for each of you and praying daily that the Lord will touch you or your loved ones with His healing hands. Pat
Janmarie, Bud is on Texotere and has been on Gemzar. He never did lose his hair. It got a little thin, but never fell out. Your ma might be pleasantly surprised. Bud did real well with both. So far Texotere has agreed with him and actually looks/feels like he did back in Aug/Sept. So we pray he is making progress again. His port went in today and that was a big relief to him since all along, the biggest problem was all of the needles because his skin is so tough from working outside all of these years that the IV needles could not penetrate it. Woohoo...hallelujah. So keep looking up and ahead. Those drugs might work real well for your mom. You are so ever close to my heart.
I'm new to this message board. My mother was diagnosed with malignant pleural effusion a couple months ago, and I had no idea what it was. I did a search on this message board, and saw one of your posts about your mother's situation and Tarceva. My mother's lung cancer sounded a lot like yours, so I did research on Tarceva. It turns out that my mother had the genetic characteristics that respond to the Tarceva drug. She had been told by her second oncologist to basically go home and don't bother wasting her time with chemo. Thankfully, the third oncologist that we saw suggested trying Tarceva, as a last resort. She has been on it for 6 weeks and has been actually feeling better since she started already. Anyway, there is a good possibility it may be successful for her, but I do understand that even if she responds to it, there is likelihood she may relapse. I recently discovered a new clinical trial for people with gene mutation who initially respond to Tarceva, but later develop immunity to it. I'm not sure if you've heard of it, but I thought I would send you these links. I thank you so much for 'being there' for me when I was at wits end and didn't know where to turn. At least the Tarceva gives us some hope, especially since we had none two months ago. My mother wanted me to say thank you to you as well. You and your mother are in our thoughts and prayers. God bless you. Kristine
Here are the links to the articles:
Thanks for the information. I knew they have been working on a second drug to hopefully help when the cancer mutates so tarceva is no longer working. I looked at the phase two clinical trials and I doubt if my mom could get into them as she has had more then two different chemo agents and that is one of the qualifiers thou I will discuss it with her doctor. The fact she did respond so well would make me think they would be interested in her case but clinical trials are often run with very strict rules about who can be in them.
I will pray that your mom sees the same benefits or even better ones then my mom got from the Tarceva and that like my mom not have a bad time with side effects. The rash was never that bad and it and cracked fingers were a small price to pay for doing away with the actual lung tumor as thou there are the liver mets that at first did respond well they eventually did start growing again so the Tarceva was stopped but as of yet she still has no signs of liver trouble. Anyway what I was getting at was that the Tarceva killing the actual lung tumor has given her 15-16 months of no lung symptoms so far and when I read the struggles of Bud, Stan, Bec and so many others here who have all the lung issues I feel so blessed to not have had to deal with them all these months. I just wish the Tarceva had worked longer then 7 months and maybe it would have halted the liver mets too.
We are currently waiting for this weeks CT results which we get next Tuesday. My mom feels good except for the chemo fatigue. eats well and shows no signs of liver trouble and lab tests the liver function has been good so hopefully the CT supports this. ( thou it has not always happened that way! She has gone in thinking the CT would be good news as she felt so good only to learn it was bad news).
When I went to chemo with my mom and stayed with her while they hook her up ( then they make you leave because of the new HIPPA laws) last time I heard two other patients talking , one has been on chemo for 2 years for colon cancer the other it was her first time. The 2 yrs lady was telling her that people ask " why go through the chemo if it is not going to save your life?" as she has advanced colon cancer so chemo is pallative. She said because so far it has given her two more christmas's, two more thanksgivings, many more family birthdays and a wedding . I though Ditto that for my mom and come June if god has it my mom will see one of her Grandsons graduate high school and that is important to her and to him too.
Tell your mom I am pulling for her and I am gald that my posts about the tarceva helped, I think we all tend to learn more here then we do at the doctors office as here you have people from all over thus all seeing different doctors who have different ideas not to mention all the very different experiences we all have had. There is alot of learning in that and alot of support from people that know what it is like. Best of luck to your mom, keep us posted as to how she does. God bless you both. JanMarie
I am so sorry for what you are going through. My mother also passed away from lung cancer many years ago. She fought the good fight for over two years. When it came back again she said no more chemo. They gave her 30 days. She lived about 5 months. Told all of her friends to come visit her while she was alive rather than dead. And,,,,they did!! From all over the country. I can say the first few months she did pretty well, by the time she passed it was a blessing. Every one is different and I hope your mom can beat the odds whether she chooses treatment or not, just support her decision. I know you said that she may be looking to you for the answer and that is hard on you to say the least. Possibly if you went to the Dr. with her and had him lay out her options so all of the pressure isn't on you. God Bless
Thank you for your message. I will be thinking of you and your mother and hoping that the CT scan results bring good news. I'll let you know how things go for my mother; she has her first CT scan since taking the Tarceva coming up in two weeks, and we should know more in early May. Again, I thank you and the members of this message board for the hope and friendship. Kristine