carrie

Charlotte, I have said a prayer to Saint Peregrine (the patron saint of cancer) and to god for you and Rich. Carrie

Marge, I am so sorry about your sister. My mom had a major stroke at 36 years old, she is now 64. I know how frustrating it can be - but I can't imagine having to deal with it and lung cancer. Your family is in my prayers. Carrie

Hi Deb - The first thing you all will probably need to do is find an oncologist. I too had my primary mass in the upper right lobe of my lung and a mass in my mediastinum area. The mass in my right lobe according to the doctors was fairly large. The surgeon planned to operate - but would do a mediastinascope while I was under anesthesia to make sure the mass in my mediastinum was not cancer, well it was so he could not go through with the surgery. I was told by the oncolgist (chemo and radiation) and also by the thoracic surgeon that they would probably not be able to operate at all. I went through 5 weeks of chemo (once weekly) and radiation (daily), and told all of my doctors that I was not giving up and wanted to look at doing surgery after this round of treatment, I was not giving up. After the treatment I had another pet scan (upon the request of my surgeon) and much to the surprise of all of the doctors the treatment had done what it needed to and I was able to have surgery. I was diagnosed in Feb 2004 with non-small cell adenocarcinoma, stage IIIA and in May of 2004 had surgery. I am now going through another round of chemo to get any residual cancer that may be hiding in there. My point is always get a 2nd opinion, and let your doctors know that you want to be as agressive as possible with treatment. I had more scans ran in June and they all came back clean. If I had listened to the doctors in the beginning I would have never come this far. Tell your mom to hang in there and Good luck. P.S. Also want to let you know for the future, according to my radiation oncologist you can only have so many rads of radiation if you all are looking as surgery as an option, I am telling you this because none of my doctors told me this in the beginning and I almost went over the amount. Carrie

Beth, Sorry you ar having such a problem with the Taxotere. Hopefully the doctor can find something different since this one causes you so much pain. Good Luck. Carrie

Ella, I just read your post in response to justakid and it gave me a great laugh. I am still laughing (out loud) and will be the rest of the evening when this crosses my mind. I am here alone and my two german shepherds look at me funny every time I bust out laughing. That was a great story, I love your attitude. Keep it up! Carrie

Kate, What an experience. I would immediately start looking for another Oncologist. I had cisplatin once and it made me so sick (vomiting, constipation) that I told my oncologist that I would not take that one again and he is putting me on Navilbean along with the Taxol that I also take. Good luck and I hope things get better for you and J. I will keep you in my prayers. Carrie

I was diagnosed as nsclc stage IIIB and they were able to do surgery so I don't know if that is the case. Carrie

Ry, I totally agree with you. Everyone should have someone with them during chemo. I am lucky enough to have my life partner she goes with me every tuesday and has since all of this started she also goes with me to all of my doctors appointments. I too had an allergic reation a few weeks ago to the carboplatin (I had been taking it this whole time and was 10 minutes from being done with the iv (it is cumulative, over time it built up in my system and I developed an allergy to it, imagine after 6 mos.). Anyway I don't know what I would have done if I had been alone. Carrie

Congratulations David and thank you for being such an inspiration to this board for so long. That is truely giving back. Carrie

Hi Everyone, I am starting Taxol/Navilbean combo next week. I was on Taxol/Carboplatin this whole time and had a bad allergic reaction to the Carbo (that is cumulative, over time as it builds up in your body I guess you develop an allergy to it, or some do). My doctor gave me Taxol/Cisplatin the next week and the Cisplatin made me deathly ill - I will not take that again. I have just been taking Taxol the last couple of weeks to let my body heal from the Cisplatin illness. I would like to know if anyone has had Navilbean and what side effects they experienced. Any info would be greatly appreciated. Everyone have a great Weekend! Carrie

cappy - Congrats on your first radiation tx and it being so easy. The others are right about the side effects being cumulative. I had 5 weeks of radiation daily and although in the middle it got a little rough it was nothing like I thought it would be, it was much better. So good luck. Carrie

You all are in my prayers, hang in there and hopefully this set back will pass. Carrie

Cheryl, Congratulations! 21 years is awesome. I agree with Peggy, The glory you gave to God was incredible. Thank you for giving us that to read. Carrie

Hi Don - Glad to hear the good news. Please know you all are in my prayers. carrie

Hi Beth, Glad to hear your chemo went well. Rest, Rest, Rest. I know that is the hardest thing for me on this chemo - I am not a "rester" I get very discouraged when I can't do things that need to get done - but I have learned to rest when I need to, and I do all I can when I have some energy. That works much better for me - physically and mentally. Take Care. Carrie

Hi Dreamer, Welcome! I was diagnosed with nsclc stage IIIb in February of this year. I am only 40 years old. After seeing my onco's (chemo and radiation) I was told that surgery is usually not an option with this stage of cancer, especially since thewy suspected mine was also in my mediastinum area according to the pet scan. I also went to see a Thoracic surgeon, he scheduled me for surgery - if the area in the mediastinum was not cancerous he would do a lobectomy and remove my upper right lobe. If the mass was cancerous he would not do the surgery, I would not know which he did until I awoke from the anesthesia. Well, when I awoke I immediately knew he had not done the surgery. That was hard to swallow. He said I would start on chemo/radiation treatment and would look at possibly doing surgery down the road (he was not very convincing). So I went through 5 weeks of chemo and radiation, mentioned to my rad onco that I am going to look at having surgery again and she immediately stopped the radiation - she said that most surgeons would not do surgery after 55000 rads (I think) of radiation. I did not have radiation that day, she called my surgeon and they scheduled me to go have a pet scan to see what the chemo/rad treatment had done. I had the pet scan, went to the surgeon to get the results and he was amazed that I was to the point where I could have surgery, his exact words were "I never thought this would happen". My surgery was done on May 20, 2004 and according to him he feels like he was able to get everything - he restaged me to a IA. I am now having chemo to get any residuals that may be there. I am sorry this is so long - but my point is doctors tend to group a everyone in the same category according to the type of cancer they have and the stage and if I had allowed them to do that with me I would have never had surgery and probably on treatment for the rest of my life. Hope this helps. Carrie

Hi Deruo, I am glad you all finally got your results back. It took about that long for me to get mine as I went through the bronchoscopy and then a Lung Biopsy. I think the medical community is using the Bronchoscopy before they use a lung biopsy because the bronchoscopy is new and they want to "test" it. Knowing what I know now I would not let them do a bronchoscopy again I feel like it is just a waste of time (and money). But now that you do have your mom's results you all can get a plan of action started for your mother. I would like to suggest that you read everything you can on your mom's type of cancer and the treatment she will be getting. There are also other things you can do - i.e a new diet of fruits and vegetables, protein drinks, flaxseed oil (the refrigerated kind - mix it in yogurt), cut out all sugars. Knowledge is really powerful when dealing with this, I have found that in my case the doctors wanted to place me in a specific group with my type of cancer and treat me as they do everyone else with my type of cancer (non-small cell lung cancer stage iiib) that would have meant no surgery just chemo/radiation - However, since I am only 40 yrs old and in great health except for this I would not allow it. 2 months after my diagnosis and after 5 weeks of chemo and radiation and made them go back and look at doing surgery and we did (my surgeon was truely amazed, his words to me were - I never thought this would be possible) so find out all you can. Sorry this is so long just wanted to give you as much info as I could since you all are just starting this journey. Good Luck. Carrie

Thanks Everyone - I am so glad I finally joined the site also. It helps immensly to hear everyones stories - for this I am so thankful. I will be keeping everyone posted as well as watching to see how all of you are doing. Thankyou for your support and encouragement. Carrie

Hello everyone, I have been reading the boards on this site for a couple of weeks and just joined. All of your support is very encouraging. I have been in treatment for 6 months for nsclc stage iiib. I am 40 years old. This has been quite a journey god has put me on. Just wanted to introduce myself. ___________ 40 yrs old DX 2/4/04 ncslc stage IIIb 5wks of daily radiation and chemo weekly taxol/carboplatin 5/4/04 Surgery - removal of two upper lobes in right lung and lymph nodes in chest wall (this surgery according to my surgeon was a miracle, it was not ever suppose to be able to happen - got all of it) Prayer is sooo powerful. another round of chemo (4 months) taxol/carboplatin(to get anything that may be hiding) - allergic reaction to carbo, taxol/cisplatin - cisplatin made me to sick. Taxol only for a couple of weeks then taxol/navilbean combo. Scans in July showed no signs of cancer

Welcome Sean, I am so sorry about your dad. Very glad that you all did not accept the first doctor's prognosis and sought a second opinion. I do not have any answers for you but I encourage you to read and research everything you can find. Again welcome. Carrie