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Old 09-04-2006, 02:37 PM   #1
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stage 1V nsclc...brain mets....unreal story and need advice and help too

Hi....I posted a little bit, but with not much info. I have since been through quite an ordeal.......

My mom lost movement in her left side, and at first was diagnosed and was being treated for low thyroid.....when her left side was completely lifeless, we had a catscan which revealed a brain tumor.

She had the tumor removed. It was cystic and fluid filled, however part of the edge was cancer, and it was from a primary in the lung. The surgeon said the removal was a surgeons dream, as it was all contained and out. She is currently going through radiation in her head (14 sessions), and doing great. They say it is for precaution only incase of microscopic cells.

Their is a mass on her lung. They say it is Non-small....andiocarcinoma (sp?).....She starts Chemo on Wednesday.

If it wasn't for the brain tumor, we would still not know about the lung, as she has no symptoms.

So, they call it "brain mets"....Why is this so bad if the brain tumor and cancer in the head is gone? Why is this stage IV, if it is now only in the lung?

She had a Petscan last week, and there wasn't any other cancer in her body.

Does my mom have hope?

She is going to one of the finest lung cancer centers in the world. It is called Karmanos Cancer Center. They say they have some of the best lung doctors in the world. They have treated her like Gold! The Therasic oncologist told me he is God loving, and that only "he" knows what will happen to my mom. He said he has witnessed many miracles!

I have cried and lost 13 pounds in the last 1.5 months. My heart is aching and sad. I love my mom. she is my dearest friend, and such a great women. Please help me.

Sincere thanks for your time

Anne Marie

 
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Old 09-04-2006, 03:52 PM   #2
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Re: stage 1V nsclc...brain mets....unreal story and need advice and help too

Anne Marie, Sorry you are having to join us here and even sorrier that you are having to join me in dealing with a mother Stage IV NSCLC ( adenocarcinoma type). It is not at all unusual for lung cancer to reach stage IV before we see some type of symptom like your mom's reaction from the brain met. That is why it is so lethal as it grows silently until it has a major hold on ones body making it harder to beat. We all think "Oh I could not have lung cancer as I do not cough or have respiratory issues" yet we get a scan for another reason and wham there it is! Or we progress to stage IV and suddenly something happens and we learn what has been lurking within us.

Despite the fact they have removed the brain met your Mom is still stage IV as anytime the cancer spreads outside the chest it is stage IV. Once cancer does met to another place there is the very real danger there are other cancer cells out there waiting to make themselves known as they travel in the blood and spread so if one got somewhere there are others out there so she will stay Stage IV.


The good news is they have taken care of her brain met and if she is like my mom maybe they will give her Tarceva and she will have the good responce my mom did as it did away with the lung tumor and though she has been off Tarceva since Aug. 2005 the lungs have remained cancer free, so we are only dealing with multiple liver mets. I have met some people that are for now cancer free from the Tarceva or the earlier drug Irressa.Sad thing is only a small percent of people benefit from these drugs but with luck maybe your mom will! It sounds like you have great doctors, I hope they take the whole body approach to treatment like including nutrition and other alternative methods( even prayer) as well as the normal treatment. I agree with the doctor as only God does know what your mom's out come will be.

You will find people here too be very supportive as they all know what you are going through and it is a roller coaster ride. Several of us have been in the battle for awhile now ( 27 months for my mom) so we have learned alot and are willing to share it so just ask and no there are no stupid questions here. I will add your mom to my prayers. JanMarie

 
Old 09-04-2006, 04:25 PM   #3
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angelmama39 HB User
Re: stage 1V nsclc...brain mets....unreal story and need advice and help too

JanMarie..........

I was kind of hoping you would answer me! I have lerked for some time, and sometimes I couldn't finish reading some posts as they were too painful.

Janmarie, is it good that the petscan came back ok? Seeing as it "lights" up all cancer in the body, and there wasn't any additional.....she does have a very tiny spot on the liver? Are you saying at any given time it could? ~~~sigh~~~ Or, Jan, most importantly, can her Chemo take care of floating cancer in the blood?

Did your mom have brain mets? Or just the liver mets? What do people mean by multiple mets?, Or multiple mets to the liver? Does that mean more than 1 spot on the liver? (just trying to educate myself) Tell me about your mom....that is inspiring to here she did so well. They commented how my mom is so healthy otherwise.

Can Chemo eat up the cancer that floated around? Or is she doomed for life as far as it re-surfacing?

As aggressive as Karmanos is, they never mentioned anything about a pill. I have however read about it. They are doing Chemo, and then 3w off, then again on 9/26th......they are re-scanning her after 2 or 3 treatments to see what it did.

Thanks Janmarie........I'm sure my questions will keep coming.

(((((((((((hugs)))))))))

Prayer is powerful! I will also add your mom to my prayers.
My mom is Janice BTW.............

Angel

 
Old 09-05-2006, 01:21 AM   #4
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Re: stage 1V nsclc...brain mets....unreal story and need advice and help too

Anne Marie, I will try to answer some of your questions before I go to bed.Yes it is good that your mom's pet scan came back looking good and that she is in good health outside of having cancer. Did the spot on the liver light up? What did the doctors say about the spot?

Chemo is suppose to help destroy any cancer cells floating around but that is not always the case and I myself have a hard time accepting chemo as it destroys the body's immune system and I think in order to win the battle your body needs a strong immune system. I really believe that our bodies were made with the ability to cure cancer if our immune systems are functioning properly which means we are getting the right nutrients to keep them strong and aid in the fight against cancer. The human body is an amazing thing and when you understand how things work at a cellular level it is rather mind blowing! I am happy to see drugs like Tarceva which is an epidural growth factor inhibitor , and avastin which is a angiogenesis inhibitor meaning it cuts off the blood supply to tumors finally make it on the market, I also am thrilled by the work being done with white blood cells that are removed and altered then returned to fight the cancer. I believe in the not so far future chemotheraphy will no longer be the normal treatment for cancer,which is great as it is so toxic to the body.

Cancer has a primary tumor think of it as the mother tumor where it all started. It sheds cells which is sort of like giving birth and those cells or babies take off on a journey via the blood and lymph system and when they end up in a spot and begin to grow you have a secondary tumor better known as a met. If there is more then one met it is multiple mets they can be in the same organ or several different places including the bones.

In my mom's case the only place she has known mets so far is the liver. The liver is sort of a filter for the body so it is a common spot for mets.She now has multiple mets referred to as" diffuse" meaning there are so many they no longer count them, some are small and some are larger. The amazing thing is we can survive with I think it is only a quarter of our liver functioning so despite all her mets she still has normal liver function.

No my mom has not had any brain mets. I do wonder if that is because her liver does such a good job filtering out the cancer cells that none have made it to the brain but the liver is paying the price or if she just has a really strong blood brain barrier that none have made it across it? The brain's blood brain barrier is another amazing thing, since we need a brain to survive it has this barrier that does not let many things threw it in order to protect it. However despite that barrier cancer cells seem to manage to sneak in on many people so brain mets are common. Cancer cells are sneaky so you can see why it is so difficult to fight them as they hide and then suddenly pop up and make themselves known.

I will say that when my mom's cancer was found the doctor first said Stage IIIB ( B because it was found in the fluid of the pleural effussion she had developed) at that time there was 1 very small spot on her liver but they did not think it was cancer but it turns out is was so she was really stage IV and that one met soon became 2 then 3 then diffuse multiple mets. Tarceva did away with some of them but not all of them.
I don't want to scare you but when dealing with cancer you really need to have someone in your battle that has their eyes wide open and looks at what is being seen and learns all they can about the cancer and yes this website is a good place to learn and ask questions as while cancer and its treatment is very different in everyone because we are all individuals there is also alot of common things we have all dealt with or will deal with . You asked about my mom but I think this is long enough and I need to get some sleep so tomorrow I will try to post again and tell you a bit more about my mom and her battle and what to look out for with this first line chemo. Is she getting Carboplatin and Taxol? You are both in my prayers along with all the others here. JanMarie

Last edited by Janmarie2; 09-05-2006 at 01:30 AM.

 
Old 09-05-2006, 10:54 AM   #5
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Re: stage 1V nsclc...brain mets....unreal story and need advice and help too

Angel,

Your moms situation sounds very familiar to my mothers situation. My mother called the dr to make an appointment because she just couldn't think. She was not able to do her job. The dr sent her to the ER. The reason she could not think was because she had a brain tumor secondary to lung cancer. We all were in shock. She had no symptoms of lung cancer. They also did a pet scan and she did not have cancer anywhere else. They diagnosed her stage IV NSCLC with mets to the brain and nodes. They did do surgery and removed the brain tumor. I can't remember now but she had 2 or 3 weeks of whole brain radiation. She was diagnosed in Sept 2005. After radiation she started gemzar & carbo. That did shrink her tumor. After that she started Tarceva. The chemo pill JanMarie talked about. My mother did very well with these 2 chemos. She was only able to do the Tarceva pill for 6 months. Her tumor started to grow but has not spread. She is now doing her third line of chemo, Alimta. We are really hoping for the best with this one. We have heard many good things.
Like JanMarie said, we are all individuals and everyone may respond differently. My most important advice to you is not to keep thinking about that next scan. Enjoy the time you have together now. You will be wasting time and energy away worrying about what the next scan may bring. Also, there may be some bad days but remember there may be some good days too. When my mom seemed really bad I thought that we may be starting the terrible road but then she would come back with some energy again. Never give up.
Prayers to all
Dawn

 
Old 09-09-2006, 03:52 PM   #6
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Re: stage 1V nsclc...brain mets....unreal story and need advice and help too

Hi everyone and JanMarie......

Mom had her Chemo Wed. She did very very well. She had taxol and carboplatin.

The actual bags were 3.5 hrs long. They served her lunch, and it was me, my sister and her sister. She had an exceptional day. She never got sick at all. Actually, she has had more energy. Is this possible?

And really good news! There was NEVER canceher r in her liver afterall. there was a spot on the catscan, however, it never lit up on the petscan. The cancer is now isolated to her lung. (she did have brain mets)...........

Honestly, does my mom have any hope for survival? Is there any way they can really shrink this tumor? I know that she has some chest lymphnodes affected. Not sure how many? Does that change things?

thanks everyone.

It was nice to give some good ne3ws for a change

angel

 
Old 09-10-2006, 06:47 AM   #7
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Re: stage 1V nsclc...brain mets....unreal story and need advice and help too

Ok, I had a little time this AM, and I am browsing the bb here.

Janmarie, you are an inspiration, and I beleive God has sent me here to this bb for some hope. I read a post from you dated November 2005. Am I correct to assume that your mom was diagnosed 26 months ago? That is truly amazing.

Am I also correct to say that her tumor in her lung is gone? Can I ask what mm was it at time of dx?

I would really like to use your story for others, and possible down the line we could really team up to offer hope to others! (my dream of answered prayers).

My mom did have a petscan, and it showed just the lung now. Her brain tumor was contained and out completely. However, as I said before, they are doing 14 sessions of radiation to take care of any microscopic cells that may have been left there. (5 more to go)

There was a spot on the liver at the time of the CT scan, however, that did not show up on the Petscan, so they told us it was nothing to worry about.

We are working with a Thurasic Oncologist at Karmanos here in Michigan. I did bring up Tarceva, and he said that is not the reccommendation as of now. Can I ask you Janmarie why? I am reading that it did so well for your mom. He said that is something maybe "later" they would bring in. Is the tarceva a later line of chemo generally? Or is it for patients whos chemo didn't work? Did the Carbo and Taxol do well with your mom? That is what they put my mom on Wed. Were you saying that the blend of carbo and taxol did shrink the tumor? I can't beleive what I am reading. Truly amazing.

Janmarie, I never said this to my mother, but when we were at the hospital for the brain removal, she was followed around by an oncologist. Every morning he would visit my moms room at the crack of dawn. He later made himself known to us as being a part of the "team" of dr's who would be working on my mom. Keep in mind, this is not Karmanos, this was the main general hospital in Detroit where my mom had the tumor removed. Anyway, when the pathology report came back positive for cancer, he informed me that it was a brain mets from a lung primary. He also told me my mom had about 14 months to live. That was ALL I was going to hear from this man. Thats when I did some on-line investigating and found the Karmanos Cancer Center. They refused to give me months or years. They said it is in Gods hands, and that they were there to fight it.....cure it, or at least control the disease. That is their mission. Actually there motto "Cancer is on a mission, and so are we"...........The commercial says "cancer doesn't want you to get a 2nd opinion"..........etc..........

Anyway, Karmanos is one of 12 comprehensive cancer centers in the world. UofM (university of Michigan) is one of them also. 2 alone in Michigan.

But I am a bit baffled when I asked him about the tarceva, and he held up his hand (he is foreign and very hard to understand)......and said not now...etc....etc.......something about later. I can't recall now, but knew it was not an option now. He has been there for 30 years. I know it is a comprehensive center, however, I don't want new drugs to be of fear for these dr's who are older. My husband said that wouldn't be the case as he IS at a comprehensive center. But I know the older ones HAVE seen alot, and I am sure the majority of stage IV lung is not good.

At any rate, I have such strong faith, and I beleive god gave us the brain tumor in order to find the lung, as she had no symptoms, and would still be walking around with the disease. Possible spreading to other parts of the body. This was not the case, so we feel very blessed and fortunate. I have always trusted God, even when the pathology report came back positive. Maybe the reason for that was to bring me to Karmanos. I beleive it wasn't cancerous, and my mom had the beginning stages of lung cancer, we would be at the Detroit Hospital, and not have gotten the wonderful care at Karmanos. My mom is too funny.....she bought several boxes of chocolates for the staff, and is having bows made now as we speak! She loves everyone as they have been so, so caring and nice. Can't even compare to the general hospital.

Is your mom at a hospital or center?

Thanks Janmarie, I am grateful to have found you!

(((((((((((hugs)))))))))

Angel

 
Old 09-10-2006, 09:44 AM   #8
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Re: stage 1V nsclc...brain mets....unreal story and need advice and help too

Hello.. my mother had a similar prognosis as your mother, and Janmarie's mother. I found out about Tarceva through Janmarie's postings, and we had to get a third opinion from an oncologist to try the Tarceva. She started taking it in March, and thank God, the lung cancer has actually gone away. She was stage IV NSCLC, adenocarcinoma, and is a non-smoker. This seems to be the profile that is used in prescribing the Tarceva. It is used as a second line of treatment if the chemotherapy doesn't work. I did further research, and found that my mother's pathology report on her lung tissue from surgery last year shows that she has the genetic characteristics (Exon gene 19 mutation) that is favorable to a response to the Tarceva. Less than 10% of people with NSCLC has this genetic characteristic. For some reason, we had to go through two other oncologists and her surgeon who didn't recommend the Tarceva, and we were blessed to find a new oncologist who was very informed about the Tarceva and my mother's genetic characteristics. We we also very blessed to have found this message board and to learn about Janmarie's mother and her experience with the Tarceva, or we probably wouldn't have tried a third opinion. It was a struggle, but you have to be persistent with these doctors. Just keep an open mind, because these new drugs are very targeted, and a small percentage of people may benefit from them, which is probably why there is a reliance on the more traditional chemotherapy treatments. Take care, Kris

 
Old 09-10-2006, 01:15 PM   #9
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Re: stage 1V nsclc...brain mets....unreal story and need advice and help too

Chris, thank you for the very valuable post. Is there a harm in taking tarceva? Why wouldn't the Dr. try it first? Once you try the tarceva, is there no turning back to traditional chemos? Could it harm the affects of those treatments? Wow! Such wonder regarding this now. And is there harmful side effects? I don't understand why it isn't being used...well, then...I can understand that it only works on a small amount of patients, and they don't want to waste time. maybe that is the reason. maybe Janmarie can clarify.

Can u tell me how your mom is now? How long has it been?, and was their mets involved (i.e. stage Iv)?

What is the prognosis for her?

All my prayers to you and your mom. A mother is a precious gift, and as I know earth is just a passing place, I also beleive in the gift of life, and will pray that my mamas time is not over here yet........

Keep me posted please...........

Angel

 
Old 09-10-2006, 09:03 PM   #10
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Re: stage 1V nsclc...brain mets....unreal story and need advice and help too

Hi Angel,
I have read your postings, but have not responded since my husband has SCLC so cannot offer any advice. I just wanted you to know you are in my thoughts and prayers.
Kim

 
Old 09-11-2006, 04:07 PM   #11
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Re: stage 1V nsclc...brain mets....unreal story and need advice and help too

Hi Angel,

I'll try to answer some of your questions about Tarceva. As Janmarie said in her recent post, there is a possibility of pulmonary complications. I read through the Tarceva literature hat this can occur in less than 5% of people who use it, and that doctors should monitor this closely through chest xrays so that it can be addressed early on.

My mother had malignant pleural effusion on the entire right side of her chest lining and close to her heart. Her second oncologist said this was inoperable and nothing could be done. She was stage IV. She didn't have any other mets when she was diagnosed in February with this stage.

It is my understanding from reading about Tarceva, that if you have the genetic characteristics favorable to the Tarceva (EFGR Mutation) the Tarceva will not only help stop the lung cancer but the other tumors that may have spread to other parts of the body.

If the Tarceva doesn't work, or if it works for awhile, but the tumor comes back after awhile, you can go back to traditional chemotherapy treatments. There are also new clinical trials for another drug that can be tried that is taken orally like Tarceva. I'm looking into this trial for my mother in the event that the Tarceva loses its effectiveness in the future. I've been in touch with someone at Harvard Dana Farber clinic who said to contact her if this happens for my mother and she needs to get into the clinical trial.

So far, my mother's side effects have been manageable, much easier on her than the chemotherapy. The side effects come and go. First it was a rash on her face that sometimes spreads to her upper body. She'll also have dry skin, but got a prescription that helps a lot with the rash. Then she'll go through a period of fatigue, but this comes and goes to. She also had some stomach aches and diarheaa at times. She's been on Tarceva since March, and says she feels better now than she has in two years, praise God. My mother is 76 years old.

As JanMarie says, we were willing to take the risk of the Tarceva, because we had no other choice. Cost of the Tarceva is very expensive, but I applied for Medicare prescription benefits and that helped a great deal, another blessing. She is taking Tarceva every day, and her oncologist is very pleased. He won't be seeing her again until November, and will probably do another CT and PET scan at that time. She seems to have no problem breathing, and is no longer feeling intense pain in her right side, so we're very hopeful that the Tarceva is still working. Every day that she is with us is a bonus and a blessing to our family. She is able to enjoy her new great-granddaughter, which we didn't think would happen when we got the news of the malignant pleural effusion in February.

Thank you for your prayers, and we'll be praying for you and your mother too. We put everything in God's hands. God bless you both.

Kris

 
Old 09-12-2006, 01:10 PM   #12
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Re: stage 1V nsclc...brain mets....unreal story and need advice and help too

Anne Marie,

I am so sorry for the delay in getting back to you and was so happy to see Kris answer all the Tarceva questions for you. I have had a rotten weekend at work and have been feeling exhausted and nauseated when I am at home but better when I am at work thus have got nothing done at home and felt like I spent yesterday in a coma! I had to go to a skills day at work today and we are testing a new piece of equipment that is like a pulse oximeter that they put on the finger to read oxygen saturation except this one has 8 different light wave lengths and can also read what is called the met hemoglobin and carboxy hemoglobin. When it was put on my finger the carboxy hemoglobin was high and being that I am not a smoker that leaves carbon monoxide poisoning. An hour later we retested it and it was normal so I must have a gas appliance that is not working right and will need to get the gas company out to check. It was just nice to know that some of this may not be stress related after all.


My mom had a great experience with Tarceva as any side effect she did have was worth the fact she had lots of energy and claimed she felt better then she had in years. It also allowed her to build up her strength which made it easier when she did have to go back on chemo as unlike the first chemo she was strong when she had to start Alimta after the Tarceva quit working. She did get the rash but it was tolerable and her finger tips split which probably bugged her the most and some mild constipation but other then that life was normal again.


Her first chemo was Carboplatin and Taxol and she would get her treatment then for the next 48 hrs become the energizer rabbit as they usually give steroids with chemo and you get a steroid buzz or high then you crash. This chemo was very hard because it totally wiped her out. The drugs made food taste bad so she did not want to eat, she got weaker and weaker so we needed a wheelchair for her, She got very painful neuropathy in her arms and legs. ( had a hard time talking her into taking pain pills 24 hrs before chemo and continuing them for about 48 hrs after chemo as pain is easier to control if you take control of it before it gets the best of you). She was neutropenic more often then not because her white blood counts dropped so low. But she never felt sick to her stomach as they made her take meds to prevent that. The tumors shrank some and the doctor decided to give her a chemo break probably fearing the chemo might kill her if he didn?t. He told her go out and enjoy life, she replied how can I I have no energy and he assured her she would, Well that did not happen so on a visit to see him I noticed she had a low grade fever and called it to his attention, he wanted to write it off to the cancer, He listened to her lungs and said "oh she has a pleural effusion again." But did not feel an x ray or any action needed to be taken yet.

She had had 3 pleural effusions back when this all began as that is how we discovered she had cancer. After the 3rd they did a pleurodesis and there were no more so I asked how could she have an effusion again and he said oh she could. Not satisfied and concerned about that low grade fever I insisted on two things one that a urine culture be done as bladder infections can wipe you out and she had one when this all began but did not have the usual symptoms. # 2 an x-ray which he refused to do so we then targeted the pulmonary doctor that finally gave in and ordered one. Well test came back she had a bladder infection, and an obstructive pneumonia as the cancer was progressing. That is why I tell people to be on the look out as had I not been my mom would have become septic and would have died and been one of those 6 month survivor statistics. It almost took an act of god to get the tests done but I can be somewhat of a pit bull and not let go until they give in probably just to get rid of me! This is where both antibiotics and Tarceva were started and by the very next day there was a big change in my mom and each day she got better and better as the infections cleared up and the Tarceva did the rest and destroyed the lung tumor. Good bye wheelchair hello life!

A lot of doctors follow very set protocols of cancer treatment and will not vary from the set protocol and I do not think Tarceva is not considered a first line treatment yet thou there are doctors that do use it first line and doctors that use it with chemo and the rest refuse to vary the protocol. My mom's is one of these. I think your mom is lucky to be getting the treatment were she is as I like their mission statement! My mom is not so lucky as she belongs to a big HMO and thus she has to get her treatment via them and does not have the option of a cancer treatment center unless she wants to pay which is impossible considering the costs. The good thing she has only been in the hospital twice. Once when the 2nd pleural effusion got so bad we ended up in ER and she was admitted and by doing so we got the CT that we still had weeks to wait for done at the same time! She stayed a few days met the oncologist and got her first chemo before being sent home. Next time was the 3rd effusion so she could have the pleurodesis done. She hated being in the hospital but like your mom the staff all loved her. I think your mom being served lunch during her chemo is so cool, we don't see that at the HMO and because of the new HIPPA laws no one is allowed to stay during chemo, you can go in for short visits or until they are hooked up then have to leave.


My mom's lung tumor size was not in mm as it was a big one it was 7 cm. Yet they never saw it on an x-ray as it was hid behind other structures so yes you can have a big tumor but have a normal X-ray!


While my mom has done well and made it this far I am sorry to say that right now she is just totally wiped out could be the chemo, could be the cancer. This is her week off chemo so I am staying home to play catch up and just got an email saying she talked to her oncologist and he decided to hold chemo next week too so she will have a two week break in hopes she may perk up some. I have a feeling that she may be close to deciding that she wants no more treatment as she hates having no energy and we have to accept her decision as it is her life and she should have some say in how it ends . She may be willing to do alternative treatments but we have exhausted the chemo route if she can no longer tolerate this one. I would love to get her into the HKI 272 clinical trials but she has had too much chemo to qualify.


I believe that we are spiritual beings having a human experience so death is just the beginning of a new journey but to us survivors it is a huge loss and creates a huge void that is difficult to fill so we are the ones that suffer while the deceased continues on their journey. Well I had better end here and I will continue to pray for your mom as How I would love to see someone from this board with advanced lung cancer win the battle even if it is not my own mom. Maybe my mom went through all of this to show how they are on the right path with drugs like Tarceva and someday chemo will not be necessary.. Who's to say why anyone is put through this hell? JanMarie

Last edited by Janmarie2; 09-14-2006 at 09:53 AM.

 
Old 09-12-2006, 01:12 PM   #13
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Re: stage 1V nsclc...brain mets....unreal story and need advice and help too

Wow Kris, thank you!

What a wealth of information you have provided me.

The pulminary issues you are referring to.......Are you saying that monitoring can help with this? I am not sure what these issues are, however, if you have close monitoring, does it always have to mean fatality?

Why did your mom go on Tarceva? I guess that is the big question here. Is it only used after the traditional chemo stops working?

I am so happy to hear about your moms progress. I have alot of faith, and yes, I pray continuously. My moms birthday is the 28th of this month. She will be 69.

She is just now feeling the effects of the chemo. She is fatigued, her appetite is down, and the taste in her mout is of metal! It will be one week tomorrow. I didn't realize the symptoms came later.

Thank you!

Keep in touch...I am sure I will bug you with more questions, so please peek back to this thread!

Angel

 
Old 09-12-2006, 01:21 PM   #14
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Janmarie2 HB User
Re: stage 1V nsclc...brain mets....unreal story and need advice and help too

Hi Anne Marie, i just left you a post but you must have posted about the same time as yours is right after mine thus if you just skim the front page you would not see that I just posted so I am sending this one! JanMarie ( I am on west Coast time)

 
Old 09-12-2006, 01:57 PM   #15
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Join Date: Feb 2006
Location: Annapolis, MD
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kris114 HB User
Re: stage 1V nsclc...brain mets....unreal story and need advice and help too

Hi Angel,

I'm glad that I was able to help answer your questions about Tarceva. As Janmarie mentioned in her recent post, the pulmonary issue is closely related to a type of pneumonia. I read some research about it, and its called 'interstitial pneumonia.' I don't really understand what this means, but the researcher said that if it is monitored closely through routine x-rays by your MD, they can see it on the x-ray, stop the Tarceva either completely or temporarily, and give medication (antibiotics?) that can help with healing.

My mother had really bad reactions to the chemotherapy last summer. She only had one dosage of a combination of Doxcetaxel and Carboplatin. She was hospitalized twice with severe vomiting, then extremely low white blood counts where she could barely get out of bed and susceptable to infection (called neutropenia). We almost lost her both times. She also had a severe infection where they injected her with the chemotherapy treatment, but wasn't hospitalized but treated with antibiotics. At the time she was stage Ib. We asked for a reduction of the chemo dosage or an alternative therapy last summer wen this happened (July 05). Her oncologist at the time said there were no other options and basically she just has to stay with the chemo. She said she didn't want any more chemo treatments. We then had her follow-up with another CT and PET scan in February, which is when the second oncologist we found said that she had progressed to Stage IV with the malignant pleural effusion lining her chest. We were shocked that she went from Stage I to Stage IV in about 6 months. He said there was no hope, and this is when I checked out this message board. I did a search on 'malignant pleural effusion' and found Janmarie's post on her mother's experience with Tarceva. My mother and her mother had similar characteristics so I thought I'd look into the Tarceva further, and we found another oncologist who immediately prescribed the Tarceva.

I had ordered copies of all my mother's medical records from 2005 so that I could have a better sense of her situation. This is something that all patients are entitled to see, and I would strongly recommend that families do this. At first the medical terminology is overwhelming, but if you read through a few times it starts to make some sense and it helps when you do more research on the subject.

Well, I should go now. Take good care, be strong and God bless.

Kris

 
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