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Cancer: Lung Message Board

Cancer: Lung Board Index


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
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

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