Jump to content

Petunia

Members
  • Posts

    34
  • Joined

  • Last visited

Profile Information

  • Country
    usa

Recent Profile Visitors

The recent visitors block is disabled and is not being shown to other users.

Petunia's Achievements

Newbie

Newbie (1/14)

0

Reputation

  1. I am so sorry to hear of your loss. I know how quickly things can change and how it all seems like the last months have been a fog. You have been such a wonderful daughter-in-law and your mother-in-law was very fortunate to have you as an advocate. All I can say is that this disease is horrible and we can only pray that one day they will have a cure, or at least more options to prolong a good quality of life. You and your family are in my prayers.
  2. Thank you for all your prayers and words of advice. Yes, I feel shattered at the moment and need to find my new place in the world. It is amazing how much hurt losing someone can cause. I never really understood what people went through when they lost a parent and unfortunately now I know how bad it is. I am slowly getting back into a routine and slowly getting out of my pity party because I know my mom would want me to go on. I am so sorry for all who have lost a loved one and send my prayers. Wishing 2013 is much better than 2012 because 2012 was the worst year of my life. Thank you all for everything throughout this horrible roller coaster called cancer.
  3. My mother lost her battle on December 22nd at 10:43 in the morning. We were all by her side holding her and telling her how much we love her. My life as I knew it is now over and I am trying to cope with what lies ahead. My best friend is gone and at peace. It has been 10 months since her diagnosis and I would have never thought she would be gone so quickly. Once she got the brain mets and WBR she was never the same. I am still in shock and do not realize she is gone. I miss her so much. This disease sucks.
  4. I had hope with the brain mets but that hope is now gone. Hospice came in yesterday. My best friend is dying. She has been in bed for days and is not really eating. It all came so fast...so quickly. There are no more options to help her. We just want her to be comfortable. I remember as though it was yesterday writing about her for the first time. I had higher hopes. My best friend will be leaving my life very shortly and I will never be the same. Thank you to all who have helped me through this disease. I wish you and your only happy and good things.
  5. Thank you very much for the info and good thoughts. It is much appreciated.
  6. At first "my world" as I like to call her was depressed. Now it is much more. I gave her stories of hope to lighten her day but, unfortunately, the MRI came back with mets to the brain. I have written everywhere for some hope. I really should learn where is the best place to write daily..maybe in general discussion...I know so many of the stories here and other places and I don't know how to always be kept up on the info... She was dx in February of this year and completed 6 cycles of chemo with good results. Had a brain MRI done 3 months ago that was clear. Now it is not clear. There are mets all over her brain. We have to go for WBR. She has been having horrible headaches so that is why we went to the Dr. and asked to push the MRI up. She has also been very, very forgetful. Forgetting things that we just talked about. I know I have written before for advice on pci but can anyone give information on WBR? The doctor said to be on the lookout for seizures. Does anyone have any experience with this? Does the forgetfulness go away? Can anyone share of their, or someone they know, survivor stories? Can she survive after brain mets? I have been positive, however, it is very difficult to watch her be broken. She is not only physically broken, she is also mentally broken ,and I do not know how or what to do to fix her. Am I just being naive thinking that she will come through this? i NEED to be positive because I truly believe that attitude is half the battle
  7. Hi, I am also sorry that you are now part of our "club." I just joined in March. My mother got diagnosed with sclc.ext with mets to the liver, adrenal gland, lymph nodes, bones. She received 6 cycles of chemo, 20 radiation to her bones, and two zometa IV (for her bones.) She now had to make the decision of PCI (preventative brain radiation) and she decided to wait until the next brain MRI. I feel for you because I remember how horrible it was in the beginning: not knowing what to expect, not knowing the treatment, the outcome... It is all so confusing and stressful. This site helped me so much. I came for answers, support, anything all the time. Everyone here is so nice and supportive. The only thing I can tell you is that it does get better once the treatment plan is in place. My mom finished her chemo in July and we all just went on a family vacation to Lake Placid where she went on the bobsled that went 60 mph and sideways. She did lose her hair, which is tough on her because it reminds her everyday of her "c". It is beginning to grow back. I would suggest to take your mom wig shopping now. I did before the treatments so when my mom did lose her hair it was one less thing to worry about. My mom did not experience any side effects from chemo which we were all worried about. She was tired during the week of chemo but I was not sure if it was just from the chemo or from the chemo and busy days (she is retired.) She is back to normal now except for her being a little more tired and a little colder than usual but nothing at all to notice. She still does her every day routines..shopping cooking. I wish I had the magic words or answers...I have searched everywhere. I may sound tough, however, this does break you. The only thing I can say is that I am tough because it makes my mother tougher and want to fight. There are many people out there who beat the odds. DO NOT listen to statistics because that is all they are..statistics. Everyone is different and I tell my mother that she is here for as long as she allows herself to be. DO not give up hope!!!!! It sucks but mind over matter is what I, you, everyone, needs to believe.
  8. Words cannot express how sorry I am for you to have lost your mother. I do understand the "dying"process as I have been through it before. It is extremely difficult to be there at that time, however, very comforting. Know that it is not a "lung cancer" dying process but rather a very normal dying process (the confusion and so on.) You are very fortunate that you were there to show her comfort and know that you did all you can to make her comfortable. I have followed your story since the beginning and I have always been sending my good thoughts. Know that my good thoughts, prayers,and vibes, are sent your way to you and your family as I am sure all the people that visit this sight have you and your family in their prayers. I will, unfortunately be in your shoes one day with my mother, and I can only hope that I will be there to comfort and make her feel nothing more than the beautiful person that she is, as you did for your mother. This disease could break us if we allow it to...please tell me how you survive this (as I know you will) so I can take that with me whenever I shall need it (I am really hoping not too soon.) I, as well as others, do not know you as a face to face person, but we do know you as a person who understands more of us than most of the people in our lives.... you will get through this because you now have a guardian angel with you and everyone around you. Know that there are many prayers and thoughts sent to you and your family.
  9. My mother, as some of you may know, has ext sclc. just about to do her 6th cycle of chemo (she did radiation 20 times) main tumor showed shrinkage (not her adrenal gland.) We have not done a checkup since radiation because she just ended 2 weeks ago. Recently in the last 10 days she has been spitting out phlegm during the day. She says it is clear but when I looked at it it seems a little pink/reddish (not blood but not yellow.) She was just diagnosed late February. Can this be a reaction to the radiation? She has not had this symptom for the past two months so it is worrying me now that she is doing this. She had this symptom three months prior to her diagnosis but then it stopped and now it seems to be back. She has her 2nd brain MRI scheduled for tomorrow as well as her second cycle of Zometa. She had a CT scan done a few weeks ago and I am wondering if they will do another one (Pet ? Bone scan) after her last round of chemo. I know they are waiting to see what is going on with her tumors inside her body before they begin or discuss PCI/WBR. It is just worrisome that she is now spitting up stuff throughout the day when I am thinking that she is getting better. Please any info or advice will be greatly appreciated..honest info and advice. Sending good thoughts and vibes to all always.
  10. Thank you both very much. Your advice has been helpful. I am guessing then if her last round of chemo is in July then they may not want to start the wbr until December. My mother is worried about permanent hair loss from the radiation but I think that hair loss is better than brain mets. Do you feel like it was worth the side effects to get the pci? I wish you all the best. Good thoughts and vibes sent always.
  11. Just a few questions about wbr/pci. My mother is about to do her 6th cycle of chemo of ext. sclc. (etop/cis) and she has been doing very well with side effects. She has just finished 20 rounds of radiation to her back/bones/tumor and finished her 5th cycle of chemo. Her main tumor has shrink as has most of her other tumors (her adrenal only shrunk a little bit.) She will be getting her 2nd mri of the brain in a week. The dr. recommended wbr/pci. I have done much research on this and know that there are pros and cons. I know the one con is that she may experience early dementia, however, the pro is that it may prolong her time here with everyone. Can anyone give insight of wbr/pci (especially with ext. sclc)? I have heard that they do not worry about side effects with ext. sclc because they say the patients are not usually alive long enough to experience such side effects (years later). Is it worth my mother going through this radiation? She is beginning to cough up stuff at night again (although it is clear with no blood) but this worries me. It has only been 4 months since diagnosis and you would never know she has sclc expect for her hair loss. She has been the same person except for some fatigue. What is there to expect with WBR? Thanks for any honest advice, opinion, and information. Sending good thoughts and well wishes to all.
  12. Thank you so much for the hope. The weirdest thing about seeing your reply is that I never look at this post and for some reason tonight I did. It is also my birthday and I spent my day with my mother. I came home and got very upset and my husband told me to believe. Now, here I am at 11:00 at night reading your reply to something I wrote months ago. Thank you so much. It means so much that other people are there to offer hope. I am so happy that there is someone out there that is almost 20 years from diagnosis. It gives hope to all. His story is amazing and I hope one day to write about my mother's amazing story of how she was able to overcome it all and come out the winner!
  13. Petunia

    Updates

    I am very sorry to hear about your bad news, however, there is still hope out there. You said you were from the NY area, as am I. I have my mother getting treatment at Columbia with a Dr. Stoopler (She was dx with ex. scls in February and is just about to start her 5th chemo and is on her 11th radiation treatment for her bones.) He is very well known for lung cancer. I also know how Sloan can take forever to get an appointment. I have talked to several people during my mother's chemo treatments at Columbia who are Dx the same. One said that Sloan would not even take on their "case" because it was not unique enough and the other said that Sloan's treatments are the same as Columbia. Also, if you get into Columbia and a clinical trial comes along associated with Sloan, many times Columbia's patients are also included. You can email me for my information as a referral to Dr. Stoopler. He is a wonderful doctor with a great bedside manner and he is "up" on all the new treatments. ..as you said "your dad is okay now." I know from my mother that what keeps her spirits up is that her loved ones treat her the same and not as though she has limited time left here on earth. I am sending my good thoughts your way and do not give up.
  14. Just wanted to give everyone an update of how my mother is doing. She is about to start her 4th round of chemo and is doing great. She lost her hair and gets a little tired but other than that she has been feeling great. She just got a ct-scan done and her lung tumors is now half the size and her other tumors are shrinking a bit. She will be starting radiation for mets on her back and bones and because it is so close to the primary tumor they will also be targeting that. She received Zometa one time for her bones and only got a slight fever the first night. She received the Nuelasta shot twice and she felt NO pain afterwards. She has truly been lucky with side effects and we are all very grateful. Now radiation is the new thing. I believe she will be going for about 10 to 15 times. Any information as to what we may expect? What are the chances of her tumors starting to grow once we stop chemo? Can they stay the same for a year or more? I am sending all my good thoughts to everyone.
  15. Anger is the correct word; I feel the same. We are now going to a dr. in New York so I would suggest the second opinion. Our new Dr. was just "up" on everything available for sclc: cisplatin, neulasta shot, radiation, pci (preventative brain raditaion) and he does the correct tests (bone scans, ct-scans, brain mri.) It is such a different world since diagnosis... tests every week, dr. appointments, highs and lows. There is hope out there for beating the odds so hang in there and be strong!
×
×
  • Create New...