AnneM
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Posts posted by AnneM
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Thanks for the prayers everyone. Kasey, yes, GammaKnife is an option, but my rad. onc. is suggesting wbr because there's less chance that it'll come back. I will talk to him further about it Wednesday.
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Hi everyone, well, I had an MRI last week due to headaches and just found out that I have 2 small brain mets and they're recommending whole brain radiation. Things just haven't been going too well lately. I'm having a lot of pain in my chest, and also shooting down my leg (I have a feeling I also have a met in my hip). My pain's gotten so much worse lately, that I'm terrified to wait on the next chemo while I do WBR, and I'm a bit scared of the WBR. I really hate this, my kids (now 3, 9, and 10) need me here and healthy.
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Susan,
Sorry for the late response, I haven't been on here in awhile. I'm sorry to hear about your mom, but so happy that she is getting help with the Tarceva cost. Tarceva helped me for almost a year and a half, my positive thoughts are with you and her that it will help her as well.
Anne
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(((Lily)))
Sorry, I missed this, I'm glad you're out of the hospital and with your family. I know my hospital also has that rule about kids and I worry about having to go to the hospital and not being able to see them...it must've been so hard.
I'm thinking of you and sending you positive thoughts.
Anne
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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.
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I keep forgetting! Mon, Tues or Wed would be better for me.
Anne
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((((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
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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
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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
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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
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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
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Well, it's been a rough road. I had a dr. appt. last week and we decided to go ahead and do a new CT scan a month early because my lung pain, and cough has gotten so much worse. I got my results today and found out that the biggest nodule in my right lung has gotten a lot bigger, and all the rest have gotten bigger as well. So onto Navelbine, it's pretty much the last one I have left to try I guess. I have to get a PICC line put in tomorrow. I've made it 2 years without having to do it and I don't like the idea of this at all. Please, everyone think good thoughts for me. Right now, I'm feeling pretty down and, well, terrified. I don't feel good at all, I'm losing hope, and my kids are still so young and need their mom.
Sorry for the downer post
Anne
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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
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Richard,
Just sending my good thoughts out to you. Many of us have been there and it does get better. Hang in there.
Anne
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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
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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
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(((Sandra)))
I'm so sorry you've been having a hard time. I'm thinking about you and sending out good thoughts. Have a wonderful time on your cruise. I did an Alaska cruise at the end of June and it was so relaxing, it did wonders for my attitude.
Anne
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Hi everyone,
I'm back from my wonderful 3 week trip. We did a cruise to Alaska, then my hubby's family reunion in Canada, then drove home to San Diego via Yellowstone. It was a great family adventure, and I'm so glad we were able to do it. It's so wonderful to take my kids somewhere where they don't have to think about cancer, or mom's dr. appointments, or anything but having fun. That's the way it should be for them all the time.
Just before my trip, I had 3 weeks of radiation to the largest spot in my right lung which has been causing pain. It didn't help any
I had a CT recently that showed some minor reduction in some modules, but an overall slow progression is continuing. So, onward to Gemcitabine we go. My first one is tomorrow. I'll have 3 weeks on, one week off. I expected this due to my symptoms being the same or perhaps slightly worse, so no surprise, but bummer nontheless. I hope it's not too bad...it shouldn't be, but that's what they said about the Alimta and it kicked me in the butt.
In going back and reading many of your posts from while I was gone, it seems that many of you are also going through some bad times with this horrible disease. I'm thinking about all of you and wishing you all well.
Anne
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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
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(((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
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Hi Judy,
I'm glad to hear you are doing okay. Keep on top of the nausea with the zofran and just rest.
Anne
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Kasey, I will put a new pic of me on soon. OMG I never new frogs did that. We definitely will keep them out!
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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
Haven't written in awhile
in GENERAL
Posted
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