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Purplemom

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Everything posted by Purplemom

  1. There are no words...but I'm so sorry for you. I pray that you and your family have the strength to make it through this difficult time. Lisa
  2. Grace I am so sorry for your loss. Take comfort that you did all you could for him and in your love for each other. I pray for peace for you and your girls. Lisa
  3. Dear Grace I am so sorry for all that you are going through right now. I just recently had to make the same decsion for my mom. It was hard but the nurse at hospice just kept reminding me that I would only be bringing her back to more pain. Just know that you both did everything you could for him and that he knows you love him and he loves you. Prayers for you, Carlton and the girls. Lisa
  4. Purplemom

    Topotecan

    Dear Laurie Keep in mind every person is different. My mom had 3 rounds of topotecan. She had no real side effects until the last one. Then her blood counts dropped and she needed 3 transfusions. This probably could have been avoided with procrit. Unfortunately, she still had disease progression during treatment. But there is a good chance it will work and that is what we want to look at. Sending prayers. Lisa
  5. Nicole Chemo and radiation can take real toll on the body. Both can cause appetite problems. Chemo can cause nausea and radiation can sometimes cause burns. My mom did get severe diarrhea from one of her chemo treatments. Tell your mom to make sure to call the doctor, they can give him something to stop the diarrhea and possibly fluids. Also, she may want to discuss an anti-depressant for him. Many people need them even for a short time. Your dad can make it through this. Just read through all the posts. There are many survivors of sclc. It may not be easy but it can be done. Don't give up hope. Lisa
  6. Purplemom

    Why so fast?

    Thank you ALL so much for your replies. Everyone here is so caring it warms my heart. I pray that all of us are able deal with these terrible situations and become stronger. And that a cure for this awful monster is found soon. Thank you again for all of your support, you are all amazing! Lisa
  7. Purplemom

    Why so fast?

    Please forgive me for not posting in quite some time. I read when I could and celebrated and grieved with you all. My mom passed away on 12/30/06. I knew that she would leave me one day but I guess I was so busy taking care of her that I NEVER thought about how much I would miss her every single day. She would call me 5-10 times a day. I still check the phone to see if she called. She had been battling small cell lung cancer and uterine cancer for almost a year. I moved her in with me in November. She took my room, the only one downstairs with a bathroom and my husband and I slept on air mattresses upstairs. Well, after a week I moved to the couch near her room just in case she needed me. I gave her a bell but I was afraid I wouldn't hear it. On 12/15 her onc told us her disease was progressing despite the chemo and she was too weak to try more. He gave her 6 months more or less. He suggested hospice. Mom was not really ready to hear that so we decide to get hospice for pain management and we would discuss everything else after the holidays. Hospice got her set up with meds and lift chair and other items very fast. By friday 12/22 we had met most of her team including her nurse David who was so kind. Christmas eve she was fine. Talking, eating, drinking, walking. Christmas morning she couldn't stand on her own. Hospice said it could be the effect of the new meds. We brought my youngest son to her room to open gifts. My last picture of her is them hugging. They were best buddies. She had watched him for me for a year and a half when I was working. No one made her a happy as he did. After that she seem better for a bit then she started to get aggitated, wanting to sit up, stand up, lay down, and not always making sense. We called hospice and it took the on call nurse a few hours to get to our house. it was about 10:00 pm. By that time, mom finally had passed out from all the meds. My husband and I had been holding her up and she had been rambling for about 2 hours. The nurse decided to have her regular nurse come out in the morning since she was finally resting. Right before my mom fell asleep, I was sitting by her bed crying, she looked at me very clearly and said "No crying, I told you before don't cry", that was the last lucid thing she said to me. Her nurse, David, came the next morning and was shocked at how fast she had declined. He called for a transport to the hospice unit at the hospital. I rode with her to the hospital because she would have been all alone back there and I know that the ambulance rides always scared her-being strapped down and all. The doctor there said this was the being of the end. She had all the signs, aggitated, not making sense, talking to people who had passed before her. We decided to keep her comfortable. Part of me kept thinking, no take her over to the hospital and save her, give her more time, but more time would just mean more pain, so we stayed. It took them a while to find the right dose, to keep her out of pain. I stayed with her for 4 nights. I didn't want her to die alone. We were with when she passed, but it still doesn't seem real. I just don't understand what happened. I knew the doctor was being generous when he said 6 mths but 2 weeks? She wasn't ready, I wasn't ready. We never got a chance to talk about it. To say what we wanted to say. She must have been so scared. Looking back now I can see more signs that I just didn't see then or I attribute to something else. Could the small cell have gone to her brain? The PET scan of 12/11 didn't mention this but it also said it was done from the base of skull to mid thigh. Was it there and not seen. The PET also showed her colon lite up. Could it have been colon cancer too. I asked her onc about it when we were there and he said even if it was colon cancer there is nothing they would be able to do for it at that point. I know the end result would be the same I just wish I understood why it was so fast. Thank you all for letting me tell my story and God bless you. Lisa
  8. Sending prayers for his family. The first time I came to this site I saw his post with the donut and beer and I thought what a great guy! He was and he will be missed. Lisa
  9. i am so sorry for you. Sending prayers for you and your family to make it through this difficult time. Lisa
  10. Just wanted to say welcome! You have been through so much but it sounds like you have a great spirit and positive attitude which can make all the difference in the world. You have found a great place to ask questions, vent or say whatever is on your mind. Everyone here has always been so kind and helpful. prayers for you and your family Lisa
  11. How wonderful! Her good spirits will make your visit even better. Have a great night. Lisa
  12. Yeah!!!! Congratulations! Lisa
  13. We went to see mom's oncologist today. We were there one week ago and were told things were stable and to follow up in 3 months. Because we were concerned about some of the wording in the new PET scan the onc said he would speak to the radiologist. He told us the radiologist had compared her recent scan to the one before treatment not the one right after treatment. So the results are worse not better. There has been some growth in the last 6 weeks. He said this is considered a recurrance and he wants to try a second line chemo. topotcan? He said there is only a 20% to 30% chance of response to this. She is suppose to start in 2 weeks. I feel so terrible. For the week she thought she was better she seemed brighter than she had been in a long time. Now she is so down. She really doesn't want to do the chemo again. I know she wasn't listening when we were discussing the chance of response. Also, she has never read the statistics on small cell, I have always been afraid that the more she knows the less she would fight. But is there a point when she should know more and if so when? I have so many questions buzzing around in my head but no answers. Part of me feels she is an adult and should be able to make an informed decision and the other part is scared she would not want to try anymore if she knows everything.
  14. Hoping that your evening goes well with your mom and just let her know you are there for her. Saying a prayer for a successful surgery. Good luck tomorrow. Lisa
  15. Hello All My mom(74 yrs old SCLC) and I went to the onc. yesterday to get results of f/u PET she had last week. This is the second one post treatment, the prior one was end of June. (Before these appts. I like to pick up her films just in case they need them and so I can read the report so I have a clue.) I'm certainly not a doctor but worked for doctors for 15 yrs as a med assist. So I kinda know how some of them skim reports and follow the impression at the end. The body of the new report seemed odd to me compared to the June one, however the end was no evidence of disease progression. We saw the doc. and he said it looked stable if not a little better so he would rather wait 3 mths for another scan than put her thru more chemo now.(On the drive over she had already told me she wouldn't have chemo) So this is great. He said to call gyn onc. to get his treatment started. (for the uterine ca) I felt a little silly but I asked him about how different the 2 reports were and he agreed but felt it was due to 2 different radiologists that read the films but that he would call and touch base with them just to be sure. His nurse called me today to tell me they just spoke with the radiologist and it looks worse not better and he wants her in the office next week. What a difference a day makes. Quite awhile back I started putting my phone number as the primary because she would always lose some info in the translation, so she doesn't know they called yet. Our appt is Wed. I think I will wait to tell her until Tuesday so she doesn't worry all week. What do you think? I haven't figured out how to do the diagnosis and treatment list at the bottom of the page yet, sorry. Lisa
  16. Thank you all for your advice. I will speak to my mom again to see if she might be willing to try some type of antidepressant or anti-anxiety meds to get her spirits up a little. i do have some updates but I guess I'll start a new post in the not so new section. Lisa
  17. Welcome to the site. I'm very new here myself but have seen alot of good things. The only thing I can say is don't jump to conclusions. It may be scar tissue. Get it checked out and keep your spirits high. I'll be praying for. Lisa
  18. Purplemom

    My Dad has passed

    Char, Sorry just doesn't seem like enough, but it is all I can say. Praying for you and your family. May the memories of him bring you peace.
  19. Praying that your moms surgery is successful and recovery is quick, and she feels well soon. Lisa
  20. So very sorry for what you are going through. Prayers for you, your dad and your family. Lisa
  21. THANK YOU-THANK YOU-THANK YOU It literally brought me to tears to read all the kind words from people that I've never met. You guys are amazing! Thank you for the suggestions. I belong to a great church and have some very good friends and neighbors that pitched in watching my little guy when we were having the inital testing and consultations. But my mom is very private and refuses to have anyone but me help her. Which is OK, I expected that and don't mind. As for anti-depressants, it as been suggested to her but she is quite admant that she doesn't need them, so unless I hide them in her food (just kidding) it is a no go. Silly question, but does anyone else refer to themselves as we? I always say "we" instead of "she". Like" we just finished chemo" or" we have an appt. tomorrow". Thanks again everyone!
  22. I've been on this site for awhile and it has been extremely helpful. So happy to have found it. Unfortunately, I'm computer illiterate and have had a hard time getting on. Not sure if this is right but here goes. In Agust last year my mom mentioned she was having post-menopausal bleeding. It took some convincing to get her to see a doctor, then her appointment was postponed another month due to hurricane Wilma. We saw the GYN and he wanted to schedule a D&C for the end of Dec. We put it off a couple of weeks because my 16 yr old son was having surgery then, to remove a testicular mass. Fortunately, it was benign-Yeah. Anyway, the day of the surgery, her anesthesiologist said they may want to do spinal anesthesia instead of local. Then her GYN asked if her GP had called us the night before. Well, no. So he said her pre-op chest x-ray had come back funny, but they felt it was important to do the D&C. I spoke with the GP later and there were 2 masses, 7cm and 5cm. Everything since then has been a whirlwind. The D&C results were uterine cancer but they would not do a hysterectomy until chest was diagnosed. After, PET scans, CT scans, bronchoscopy, mediastinoscopy, she was told SCLC, the end of Feb. It seemed like it took forever to get things rolling. Finally started mid March, and the end of May she finished 4 rounds of chemo, carbo and etopocide. And 30 radiation treatments. The f/u PET scan looked 80% better so the onc. wanted another one in 6 weeks, which she had thursday. We get the results in 2 days. Of course, I'm hoping for the best and being cautiously optimistic, but my mom just doesn't ever feel well. She has never looked on the bright side of anything and has always complained about something, but now I can't let any complaint go because it could be something. I try to tell her attitude is everything etc., but so far that hasn't helped. I'm so glad I can take care of her, I really am, but we have no other family members that can help, my sister lives in another state and they had a falling out years ago, so it is just me. At this point she won't leave the house except to see the doctor. She stopped driving when all this started, she still lives in her own home, 10 mins away. I do all her grocery shopping, her bills, make all her appts and take her to them, all with my 3 yr old son in tow. He knows the chemo doctor and the radiation place very well. (I just put him in pre school to give us both a break) My husband is very understanding but he is out of town alot and my other son who 17 now helps as much as he possibly can ,but he IS 17. Most days I'm fine, on occasion I lose it for a minute and then it's back to business. I don't really have any questions, just had to get all of this out of my head. Prayers for everyone out there. Thanks for letting me ramble! Lisa
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