Julienyc

I've had a similar experience with my mom- she has been relatively healthy since starting this crazy journey. (I am so grateful.) She rebounded well from brain surgery in January, and although she has had some progression of disease in her lungs, most of her symptoms are from the chemo or radiation. I am noticing a change in her voice a bit an some episodes of dry cough but ultimately she's doing well. Still active and keeping active... I'm not sure of your mom's history but I hope she continues to do well. All the best, Julie

What amazing news- congrats to you. You are truly an inspiration!

Robin, Thanks for you words of encouragement and support... so apprecaited. Had another couple of questions for you... Did you find you had sensitivity to cold, and what about your fatigue level. Did you take anything for nausea during treatmetns? Thanks, Julie

Well- my mom had a nice run of stable for about 2 months. Now showing increase in primary mass on left and new small tumor in upper right lung... We are stopping Tarceva after 2 months and moving on to clinical study- Mom will be getting Gemzar and oxaliplatin (Eloxatin) ... I think generally used for colon cancer... Is anyone familiar with this drug? Side effects? Thanks, Julie

You can totally live a normal life. My mom has very small veins and the port made her chemo treatments so much more manageable. It's been in for 6 months and she doesn't even know it's there usually. Once in a while she feels it but not much- she swims, showers and everything else... Julie

I totally understand the craziness. I live in NY and my mom and dad live in Florida. My father has been devistated by my mom's diagnosis and conceded all caregiving responsiblities to me. I had to move in with my boyfriend in February because I couldn't afford airfare every month and pay my rent. I had to drive my dog to Florida because I was never in NY to look after him. My brother lives 4 miles away from my mom and dad and has only gone to 1 MD visit and only because I forced him to go- talk about denial. I have been shuttling back and forth nearly every week to attend MD appoints, scans, test, etc. I have been on the phone and email contstantly to get authorizations for treatment, activate my mom's disability benefits, retire her from her job.... whatever. I was so overwhelmed by it all the time... and still am depending on the day. Probably the worst day was at the end of March- my mom had survived a craniotomy in Jan, WBR in Feb, and had started chemo in March. I felt like all things were starting to gel. We had gotten thru so much and had put so much behind us-we were just moving along... shaky...but moving along. Then we did our 1st brain MRI 2 months after the WBR and her neurosurgeon told us her tumor was back. I was beyond devastated... we couldn't believe the news. I was so upset that despite my best efforts I couldn't control what was happening-- I went into action mode... and mom had gamma knife in April... and now 4+ months later we are stable... a place I never imagined we'd be. It is only in the middle of June that I had a reprieve from panic attacks about my situation I still have them but less frequently. Luckily, I work for myself so I could be flexible with my schedule but my business has suffered... I work as much as I can remotely and I do what I can... but my priorities have changed completely... and I've never had a clearer sense of purpose. My priority was caring for my mom and making that decision was the best I could have made. I don't know what tomorrow will bring but I know my family is priority. You are doing all you can... and I'm sure your mom is cherishing the time you are spending with her as much as you are. I hope you can find comfort in knowing you are not alone in your struggles- I always felt better after reading posts that conveyed a similar plight- I wasn't alone... and you aren't either. You will get through- you can't accomplish everything all at once... take it one day at a time.

fabulous news...

I don't post as much as I'd like but couldn't contain my mom's good results. I have been near hysterics(but keeping to myself)leading up to today's news- I was so nervous about getting less than favorable results for my mom's PET scan. Results were so much better than I expected and indicate no new growth in primary mass and shrinkage in 2 smaller masses in right lung. MD confirms no new mets anywhere else. No one else around me seems to understand what great news this is-'s not NED but she's STABLE 8 weeks after chemo- plus mom is feeling great- she exercises daily and feeling pretty darn good... which makes me so happy. I just had to share my news in a forum where it can be most appreciated. So here we are living with cancer... and I couldn 't be happier right now. Julie

Thank you Kasey!!

Does anyone have any advice? My mom has been responding well to chemo after completing 6 months of tx (6 sessions of carbo/taxol every 3 weeks). She is stable and healthy (exercises daily and active, overall in good spirits) - with 2 confirmed masses in right and left lobes. (Plus a couple of small blemishes suspected, but not confirmed CA) CT scan from this week indicate all is stable except slight change in lymph node- my dad says the MD says it looks slightly inflammed. (And since I was not at the appoint so I don't know which one.) MD said he would not recommend radiation as it would fatigue her too much but thinks cyberknife is something we could consider for lung lesions. We are doing PET scan next week to get more precise picture of chest. Has anyone any experience with cyberknife (good or bad)? My mom had gamma knife on her brain mass a few months ago- should I expect same protocol? Also, is it jumping the gun to ask about removing lymph nodes to limit further progression? I know my mom is stge IV with solitary brain mass but still hopeful to contain as much as possible. Thanks, Julie

Stay strong Robin- you have so many here to support you. Sending positive thoughts and energy your way...

My mom had her original tumor (1.3 cm)surgically removed in January and then had WBRT for 3 weeks following (with 2 week break for wound to heal). Follow up CT scan indicate small brain lesion 1 mm at same spot of original tumor... regrowth of original tumor...decided against surgery and completed gamma knife procedure instead. Should I expect tumor to disappear altogether or does it just sit stable (and hopefully dormant). I was expecting it to break up and disappear but neurosurgeon claims most don't... any thoughts or commendts?

This is fabulous news Ned- so happy to hear you are responding well... Julie

My mom managed well with 3 weeks (15 sessions) of WBR. She finished at end of Feb. loss of hair and sensitivity to head were most noticable... flush of face and fatigue as well... but not awful. Mom does get tangled in her words from time to time now- I think this is resiudal of tx but overall I think benefits are well worth risks, at least so far... good luck with WBR... I've been doing research about cyberknife as well seems really fabulous as well... at least for lung lesions... not sure about brain...good luck with all... Julie

Barb- After my mom started whole brain radiation she had very same symptoms... very sore tender head- over time the tenderness did go away... She stopped wearing her wigs and resigned herself to soft terry cloth turban and very soft smushy pillow to sleep. I wish you all the best! Julie

I can't believe the response to "my story"... I am so encouraged. Thanks for all your recommendations regarding treament for nausea during chemo... I promise to keep you all updated on my mom's condition... Julie

My mother was just recently diagnosed (Jan 5, 2007) with stage IV NSCLC with metastisis to her brain. She has the primary lesion in her left lung and smaller diffuse lesions in her right. On the 15th of January she proceeded a craniotomy to remove a 1.3 size tumor from her frontal-temporal lobe. Surgery was a huge success and her brain looks clear at this time. She has just begun whole brain radiation this past week (1st week done!!) and we are on our way. Her plan of care at this time is for 15 sessions of whole brain radiation followed by 6 sessions of chemo to begin after her radiation on 2/27/07 (a combo of Taxol/Carboplatin). At this time PET scan indicates that it has not spread to additional organs which is a relief. My mom is such a vibrant, happy woman and truly makes an impact on everyone she meets. She is healthy in all respects except for this cancer. I am so concerned about how the chemo will affect her- she is so scared of being sick or experiencing nausea... I know this should probably be the worst of our concerns but my fear is that she will give up if she can't handle the conditions. Anyone have suggestions to prepare for the worst case scenario? She is already drinking lots of liquids and she exercises daily. The case becomes further complicated because I live in NY and my mom and dad live in Florida. We have very little family so I have been flying down every week to be with her. Luckily, she has good support of friends in Florida... we are all optimistic that she will respond well to treatment... the stories listed really give me hope... I am relieved to make contact with others who are struggling and have struggled with this disease. I always thought my family genes were pretty hearty but now relize that lung cancer runs in the family. My mom's father died of cancer when she was 13... and now it's back. Both were heavy smokers, although my mom has not had a cigarette in almost 30 years. She is only 58 years old... I still ahve a hard time reconciling that living with cancer is my new reality... it just hasn't sunken in yet...