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AnneM

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Everything posted by AnneM

  1. Hi Everyone, I've taken a huge downswing lately (since beginning of December, 2009). I'm out of medical options, no more chemo, no more radiation, there's nothing left to try, I've been on way too many different chemos already. My pain has gotten just too great to handle. I have horrendous pain in my chest, back and hips, and my left leg often just gives out on me, the nerve is very week. I have to have someone here with me all the time. It is so frustrating that I was able to do things on my own a few months ago, and now, I need help with every little thing. I had to have Hospice come in and help me monitor the pain medications and decide what was working and what was not. It's just so hard to deal with the kids needs right now too, they are now age 4, 9, and 11 and trying their hardest to be strong. Well, that's all I'm going to write right now as I'm getting too tired to hold my eyes open. Talk to you all again soon, Anne
  2. AnneM

    Bryant Gumbel

    I was watching Regis and Kelly this morning when he co-hosted and came out with the cancer news. I am disappointed he did not say it was lung cancer. I believe he is a non-smoker, and it was a missed opportunity to really raise awareness.
  3. I keep forgetting! Mon, Tues or Wed would be better for me. Anne
  4. ((((Michelle)))) I'm so sorry to hear about your husband. It's so horrible that you have to deal with all that financial stuff at a time like this. I'm thinking about you and wishing you some peace. Keep posting as long as it helps. Anne
  5. AnneM

    Taxotere Therapy

    I had taxotere in the beginning in combination with cisplatin. It is a rough one and caused lots of side effects, but the only lasting one for me is that I still have numb toes after 2 years. I think it is one of the drugs that really did some serious tumor shrinking for me. My doctor is considering using it again if my current treatment fails. Everyone is different, and sometimes it's hard to weigh if something with a lot of tough side effects is worth giving a try. Good luck to you and your sister, Anne
  6. Liz and Izumi, I had Alimta pretty recently by itself. It caused severe fatigue for me along with a bit of nausea. Pretty much I needed to sleep on days 3 and 4. I had Cisplatin as a first line treatment, but it was in combination with Taxotere so I'm not sure which side effects to attribute to Cisplatin. I had hair loss, but it was probably due to the taxotere. Also nausea and changes in my taste I think were due to cisplatin. Good luck to you. Anne
  7. Hi everyone, I was diagnosed at stage 4, adenocarcinoma with mets to my spine, hip, shoulder, and rib in July of 2007. I got a pretty good response from my first line chemo and continued on Tarceva/Avastin for 14 months after that with no progression. Lately, I've tried Alimta, then Gemzar, and am now on Navelbine and hoping it will be the one. I was extremely bad off when diagnosed and nobody thought I'd make it 1 year, here I am at more than 2 years with a lot to fight for. Anne
  8. Patti, congratulations on 3 years! You are an inspiration to all of us and I second Kasey's words "Stats Schmats!!" You will see your son graduate. Anne
  9. AnneM

    Sandra

    I am so sad to hear this awful news. Sandra was always there for me with kind words, she connected so well with so many of us. She will be greatly missed. I am thinking of her husband and children today with such a heavy heart.
  10. Patti you are the best! Thanks for getting information for us. I have also been checking here every day hoping to hear something. (((((Sandra))))) I am sending good thoughts your way. Anne
  11. Richard, Just sending my good thoughts out to you. Many of us have been there and it does get better. Hang in there. Anne
  12. Kasey, I'm so happy for you! You've been an incredible support to me and so many other people. Thanks for giving us all hope. Anne
  13. Michelle, There does seem to be correlation between rash and benefit from Tarceva, but don't worry about it too much. I have heard from many that had little or no rash, but did get benefit. I didn't get any rash whatsoever until after 6 months on it, and when I did get it, it was pretty mild compared to others. I remained stable on Tarceva for 14 months. Everyone's different. Good luck to you and your husband. Anne
  14. Hi everyone, I've so far had 11 radiation treatments (just over 2 weeks), 3 more scheduled. This has been to try to reduce some of the pain that seems to be caused by a nodule near or on the recurrent laryngeal nerve. They told me to expect some relief of symptoms after 2 weeks, but so far things are exactly the same. It's so hard to be patient when you're in pain. I was so hopeful that this would help and I would be able to enjoy my upcoming trip with less pain meds, but now I'm worried that it's not going to do anything at all. Any of you that have had palliative radiation...how long did it take to reduce pain? Did it continue to get better after radiation stopped? Thanks, Anne
  15. (((Sandra))) I'm sorry you're feeling down. I'm dealing with a lot of pain right now too, and I know it just wears down your positivity after awhile. My middle son has been so angry at everything this past couple of months and his change in behavior is timed perfectly with my worsening symptoms. It's so not fair that our kids have to deal with this. But all we can do is just be there with them/for them now. I'm thinking of you and I know that Navalbine will work it's wonders soon. Anne
  16. Hi Judy, I'm glad to hear you are doing okay. Keep on top of the nausea with the zofran and just rest. Anne
  17. Kasey, I will put a new pic of me on soon. OMG I never new frogs did that. We definitely will keep them out!
  18. Hi Everyone, It's been a long couple of months for me and I just felt like writing about it here. I started on Alimta after some progression in March. The first infusion wasn't too bad, although worse than they said it would be. I had mild nausea and threw up once. The second infusion was horrible, rivaling my first line cisplatin/taxotere. I had horrible nausea and vomiting, I couldn't keep anything down, even my pain medicine, so I was also in a lot of pain. I was trying to take the compazine I had left over for nausea, but that was doing nothing. after a little more than a day of this, my husband called the dr. for me, and after waiting a half a day for her to call me back, we got a prescription for some good antinausea meds. They kicked in almost immediately, thank goodness. My third infusion we were prepared for and I started the antinausea meds 6 hrs after leaving chemo. Finally, it was the response that they told me would happen, no nausea (except when I forgot my antinausea meds once), and extreme heavy fatigue. I basically slept for 2 full days and felt like I'd been hit by a truck. I had a CT after 2 infusions and it's good, but not great, hopefully the next one will be a bit better. Thanks for listening. This medication seems to have a wide variety of side effects, I remember reading some of you had a lot of trouble with it and some very little. On another note, I put a new Avatar up (hopefully it worked). It's a picture of the pond my husband and I just finished in our backyard. It has 6 koi and 2 turtles. If you look carefully on the rock in the middle, you'll see the turtles sunning. It's so peaceful to watch and listen to. I just love it. 51 days until my Alaska cruise, yeah!! Anne
  19. AnneM

    Fear

    I have that fear too, I think it's impossible not to. I'm stage IV too and was stable for 14 months until recently. For me, the fear has to be pushed aside every day so I can go out there and be a mom for my kids. I get my strength from them as I'm sure you get strength from yours. We all have to live for right now as we don't know what's to come. Anne
  20. Hi Ned, I'm glad you're doing this log. I'm actually just beginning on this same road. I just went off Tarceva/Avastin and will start Alimta on Friday. I hope everything goes well on your upcoming scans. Anne
  21. AnneM

    Recovery

    Hi teardrop, I'm sorry your sister is having a hard time. I had cachexia as well in the beginning of my treatment and it's pretty scary. I quickly lost 40 lbs and ending up at 95 lbs at my skinniest. I would eat, but would just keep losing weight. My family just continually pushed protein powder shakes, boost, muscle milk, etc. Anything with extra protein in it. Also, make sure she stays hydrated...I had to have extra IV hydration a few days after each chemo treatment. eventually I gained it back little by little. I'm now back at my normal weight.
  22. Hi, my results appts are always one week after the scan. I find this to be too long too, but it's the best I've been able to get.
  23. My hair has grown sooooo slowly. It really frustrates me. This is the current length of my hair on my avatar picture and it has been a little more than a year after chemo. I guess it's the Tarceva like others have said.
  24. Hi, I have been on Avastin every 3 weeks for a year and a half. The first time I had it, they did the infusion over an hour and a half, the next time for an hour, and every time after that, it's a 30 minute infusion (they just wanted to make sure there was no reaction at first). I think it's a real easy medication for most people to tolerate. I have no side effects from it so far, except for a very slight increase in blood pressure. I think the blood pressure rise is the most common problem and the reason people need to go off it. It also can cause some bleeding problems, so you have to be off it if you are going to have surgery. No hair loss with this one. Good luck.
  25. Hi Jenn, I was also diagnosed after severe back pain brought me to the ER. A little over a year ago my back pain was so bad I could not manage to walk from my bedroom to the family room, I went to my first chemo in a wheelchair. After 1 chemo it was somewhat better, and after 2 it was significantly better. Now my back is just a minor issue. I wish your step dad well through this difficult journey, there is hope that his pain will get better with chemo alone. Anne
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