sophiesdaughter

Thank you so much for your responses and support. These are excellent suggestions. I will try the letter as a start, since I live far from her, and will try talking to her as Kate and others have suggested when I next visit. I'll keep you posted. Dana, I am sorry that you are also going through this, it is a very difficult place to be. Regards, Rana

The latest on my Mom is that Tarceva didn't work and the tumors in her lung progressed, her brain mets have been stable though. So after being 6 week in hospital for shortness of breath due to plural effusion and severe back pain (not related to the cancer), she was told that there were no more options for treatment and was sent home on hospice. She has been home for a month and a half. It is a very difficult time for us, especially since I don't live close to her, she lives in Toronto and I live in New York, and I work full time and have small kids; my Dad is her caregiver, I visist her on weekends when I can, but am not there for her day to day care. My Mom is on morphine and on oxygen, but although she gets up and can still do a few things around the house, she has no desire at all to leave the house, she is very lucid and alert though..She has good days and bad in terms of the pain and shortness of breath, and they had to up the dose of morphine a few times in the last 6 weeks.. My questions are: does the end happen quickly and suddenly, or does it progress slowly? Also, I would like to have a honest talk with my Mom about what is happening and tell her how much I love her and will miss her and how much she means to me, but I find it very hard to bring up the subject, and my Mom doesn't discuss this topic at all.. Any ideas of how/if I should bring this up? Thanks as always for your help and support. It has been almost 5 years since my Mom was diagnosed, and this site has been a great source of support and information... Regards, Rana

My Mom has been on Tarceva for 2 months, and although the brain CT scan showed some reduction in brain mets, we just found out that she now has increased pleural effusion which is causing shortness of breath, and the largest nodule has increased slightly... Her oncologist has requested that she get the fluid drained, but said that it will return and her situation will only get worse. I would love to hear people's experience with pleural effusion, how it was treated, the symptoms, etc. Thanks, Rana

Thanks everyone for your response. Debbie, it is very encouraging to hear about Alan, I wish him continued succcess in fighting this disease. Carole, the radiation oncologist did not recomment WBR due to the side effects, and felt that since my Mom had just started on Tarceva and she had no symptoms from the brain mets, he would not do radiation at this point.. I don't know if I am comfortable with that decision, but she is meeting her oncologist next week and will discuss this further with him...Thanks for the article, it is encouraging to hear that the response to Tarceva happens early... I had also heard that Tarceva crosses the blood-brain barrier, and the response in brain mets was similar to response in other parts of the body...

Hi Anne, My Mom was diagnosed four and a half years ago stage IV. She has been doing great and only recently developed brain mets.... I wish you the best of luck in fighting this..... Rana

A few days ago, four and a half years after her diagnosis of stage 4 NSCLC, we got the terrible news that my Mom has brain mets. Since she has numerous nodules in different parts of the brain, the only option for her is WBR, which the doctor opted not to do because of the side effects, he said he will wait to see if Tarceva, which my Mom started a few days ago, works. My Mom is very scared, and I would like to hear if there are members who had long term survival after diagnosis of brain mets, and if anyone had sucess treating the brain mets with Tarceva (or any other systemic treatments). Thanks as always for your support. Rana

Mark, It's great to hear that Iressa has been working for you for so long. My Mom was on Iressa for 2 years, then she had some progression, so she was taken off, now she is on taxotere and is handling that well and had significant reduction in her tumors, I think Tarceva will be her next option. I wish you continued success on Iressa for many more years. Rana

My Mom has been on Taxotere since September, she had low blood counts on the first cycle, so they reduced the dose, and since then apart from feeling fatigued sometimes, she is tolerating the chemo well. She had minimal nausea and sometimes had a mild metallic taste in her mouth. This chemo has kept her stable and today she has an appointment with her oncologist and he will decide what the next steps are. Rana

I'm very sorry that you got this news!! My Mom also recently had progression after being on Iressa for 2 years, and off course it was a shock: back to reality! But, progression doesn't always mean the beginning of the end, aren't there more chemos your Dad can try? did he try Avastin or Tarceva? We have a game plan for my Mom, she is now on Taxotere and will go on to Tarceva after that. As far as your wedding plans, I agree with what others have said: I'm sure your Dad would love to be at your wedding, and no doubt it would mean a lot to you to have him at the wedding, plus planning for the wedding would a happy occasion which would distract from the pain and uncertainity of the cancer. I wish you the best of luck! Rana

JanMarie, Your post really touched me, I am sorry you are going through this, it must be so hard. Off course it's not selfish to wish her to keep fighting... but at this point all you can do support her decision to not fight, just like you supported her in her fight before. I hope the weeks/months ahead will be comfortable for her, and remember to cherish every moment you have with her. Prayers for you, Rana

Nick, I am so sorry for your loss. Prayers for you and your family during this very difficult time. Rana

Kim, your post made me cry. I am sorry for all the pain that you have been going through. It sounds like you were such a wonderful daughter to your mother.

Melissa, That is excellent news. It's great to see your Mom doing so well. 8 years since diagnosis!!! Rana

Thank you very much for your responses. My Mom is still in hospital, still in pain, but the pain is better. They still don't know what the cause of the pain is, it's not pneumonia, and Mum's bone scan is clear (thank God), they will be doing a CT scan tomorrow, and they did some liver tests today. Hopefully we'll find out soon what is causing it, and off course we are hoping it's not cancer related. Jyoung20 and Pam, Did Taxotere work for you? Rana

My Mom started Taxotere a week ago and has been having very bad back pain since the third day of the chemo. Tonight the pain was so bad that she was screaming and couldn't tolerate it, so my Dad called 911 and took her to the emergency room. I live in New York and my Mom lives in Toronto, and I feel so helpless and so worried; it was especially awful because while my Dad was talking to me on the phone, I could hear my Mom screaming. Will they be able to help control the pain in the hospital? Does anyone have experiences with severe muscle pain? and how were you able to control it? Thanks, Rana

I am very sad to hear of Jimben's passing. His posts always gave me hope. My condolences to his family, and specially his 'shadow'.

Lori, I am so sorry to hear of your loss. You have been such a wonderful and brave daughter to her throughout her illness. Rana

The inevitable has happened: after my Mom has been on Iressa for 2 years, Iressa stopped working and she has progression. Her doctor would now like to put her on Taxotere. My Mom wasn't able to tolerate the first chemo that she took (navelbine and cisplatin), and although her doctor reassured her that Taxotere (every 3 weeks) is milder, I am still worried and would like to hear of people's experience with Taxotere vs. other chemos that they took. Thanks as always for all your help and support. Though we never expected Iressa to work indefinitely, it was still a shock to hear of her progression. Rana

My Mom has been on Iressa for a year and a half and it initially shrunk the tumor, and then kept her stable. In the last 10 days she has been having shortness of breath on exertion. An x-ray showed a new 1.5 cm shadow in her lower left lung, and she will be having a cat scan tomorrow, and will see her onclolgist on Thursday, where she will find out if it is progression or not. My question is: in the event of progression, would Tarceva be a good next choice? How common is it for Tarceva to work on someone after Iressa stops working?. Do you have any other suggestions? My Mom had a very hard time with chemo, but maybe she might be able to handle another chemo better? Thanks as always for your advice and support.

Carleen, First I'd like to say how much I admire you for the very strong love that you have for Keith! Regarding your dilema, I think it is a wonderful idea, and I would say go for it! It would be a wonderful gift for you and Keith, and would give you something very important to live for. You obviously are a very loving person, and could give a lot to a child... Rana

Sending prayers for you and your Mom. Rana

Janet, Why is Ron seeing another oncologist and not the original one? did you like the original one? It seems that there are more options: tarceva and alimta, both more tolerable than other treatments. Does the oncologist just want to wait until Ron is stronger? remember you always have the option to get a second opinion if you feel that this oncologist is too negative. Good luck tomorrow, please keep us posted.. Rana

J, Yes, my mother has now been stable for more than a year. The 'ask the experts' category is the category under 'General', and you can post there the same way you post under any other category. Dr Cunningham usually responds in a day or two. Rana

J, I think your question would be a good question for ask the experts. When my Mom started taking Iressa over a year ago, she had innumerable very small nodules throughout both lungs, and a large nodule 2.9 cm, now all the small nodules have gone except 2, but the large nodule hasn't changed, it's still 2.9 cm, so like you I have this hope that it is scar tissue, or if it's not scar tissue, I don't know how long it will stay stable, also, if it is a live tumor that's not growing 'stable' is it because of the drug? or is it a very slow growing tumor? I don't have answers to your questions, because I have similar questions... Rana

Frank, I always enjoy your jokes!!! Rana