AnneM
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Posts posted by AnneM
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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
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Hi everyone, I haven't been posting much lately, but I have been checking in on all of you from time to time. Here's what's been going on...my scans have been stable for 14 months, but I've been having increasing chest pain/coughing over the past 3 or 4 months, so I knew something was coming. My latest scan confirms progression. I have been taken off Tarceva/Avastin and will start Alimta on Friday. Here we go again.
Oh, and on a more positive note, I participated in the San Diego Breath of Hope walk yesterday, and $129,000 was raised for LUNGevity, yeah!!
Anne
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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.
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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.
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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.
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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.
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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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I have been on 150mg for 10 months. It took 5 months for my rash to appear and it's fairly mild and easily controlled by minocycline. The worse side effect for me is the diarrea. I have the immodium with me all the time, yuck. Anyway, what about trying minocycline first before reducing Tarceva to see if you can manage it that way. At least you know it's working. I also found that Eucerin face cream helped me at the beginning of my rash.
Anne
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Hi everyone,
I got to be a dolphin trainer for a day and I had a blast. Just wanted to share.
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I just want to vent with you. My hair is still very short from first line treatment and that ended almost a year ago (Nov). I'm not sure why it's growing in so slow, but it is curly and it wasn't before. I am so ready to have my hair back. I also realized that it wasn't so much about the hair, but about not looking sick. Good luck Sandra, I imagine that after one 1 round it would start to grow quicker.
Anne
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Date Diagnosed 7/3/07
LC type: non-small cell, adenocarcinoma, stage IV, tumors in both lungs, mets to spine, rib, shoulder, hip
Treatment: first line- Cisplatin, taxotere, Avastin 6 rounds -considerable shrinkage, not much change in bones
second line - Tarceva/Avastin - much improvement in bones, lungs stable 7 months
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We are going to spend as much time at the beach as possible (this is my happy place), the pool of course (all the kids are taking swim lessons), and just have time together as a family. My mom, sister and I are planning on going on a girls' long weekend somewhere in August, but not sure where yet.
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Thanks everyone for your help. I got a prescription for Cordran tape and it has really helped the tenderness in the past 2 days. I'll see how this goes.
Anne
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I have been on Tarceva since November and am just now getting the skin rash. A couple of months ago I got this sort of blister on my big toe where the side of the nail meets the skin. It got red and very painful and is still there now, but now it is on 3 other toes. I went to a podiatrist who thinks it is problems with how the nails are growing back in after chemo and pushing into my skin. He trimmed the nail corners back last week and said if it doesn't help, that I should come back in and have a small nail surgery where they cut out the whole side of the nail. Well, a week later, they haven't cleared up and now it's on my other big toe. It's very painful to touch the area. I'm wondering if this is a Tarceva reaction and if so, I'm thinking that the nail surgery wouldn't even help. Do any of you have this sort of thing going on??
Anne
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I have not been back to work since diagnosis. I could not physically do it with my back pain. I had been planning on returning to work, but I decided about a month ago to call it quits. I figured I could manage maybe 4 hours a day, but it would be exhausting for my back and I worried what amount of energy I would have left for my kids. My kids are young, I still have one toddler, and I am cherishing every moment I get to be with them. I must admit, I have never been a workaholic and I am enjoying my leisure time (although I don't have much with a 2 year old running around)
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For me, it started in Jan '05 with a cough and aggravation in my chest/throat that was hard for me to describe. Dr. said probably acid reflux and gave me medicine. Went back to the dr. several times over the next 2 years with worsening symptoms, blood tests were normal, had CT of neck that was normal, and even had a normal chest x-ray. April '07 severe back pain began but didn't get an MRI until June which showed abnormalities in my spine, biopsy and chest CT confirmed stage IV lung cancer just before my 36th b'day.
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Sandra,
I have no surgery experience or advice, but I wanted to just let you know my thoughts and big hugs are with you. I know the kind of pain you're in. I had a compression fracture in July and could barely move. I had to use a wheelchair to get from my bedroom to the family room. I was also on a bunch of morphine. I didn't have radiation, but the pain did get much better after 2 chemos. Now, my fracture looks like it is healing finally because there is no cancer on that spot anymore and my back pain is now very mild. I wish you the best in your treatment.
Anne
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Hi Connie,
It's amazing how you've put into words the exact same symptoms as me as well. I have the Tim Conway shuffle in the morning big time. But it gets better once I've moved around a bunch. My symptoms have gotten a bit better over the past month, I think it was just waiting it out, but I did also try Turmeric supplements which are supposed to help the joints (It's just the ingredient in curry).
Anne
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It's not a drug, just a supplement...it's an ingredient found in curry I think. I get it at a health food store. Allieve helps a little too.
Anne
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Hi Betty,
I also have joint pain, although I'm not sure if it's from Tarceva. My Dr. has suggested it may also be from the Taxotere. I have been on Tarceva 150 mg for 6 months and I got severe joint pain in February. I could hardly move when I would get out of bed in the morning, and my hands would just ache in the middle of the night. It would get better the more I moved around. It has improved somewhat since then and now I'd call it mild joint pain. There was never talk of going off Tarceva. I tried adding Turmeric as a supplement because it's supposed to be good for joints. Who's to say if the improvement was the Turmeric or just time.
Anne
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Sandra,
I'm glad you posted this. I'm dealing with the same issue. My kids understand my diagnosis on a very basic level. They are younger than yours so didn't ask too many questions that I wasn't prepared to answer. I've never talked about the possibility of dying with them. My 7 year old asks me every once in awhile if I'm going to be a cancer survivor...I don't know where he heard this term, but I just tell him I am surviving every day and I'm fighting my hardest to make the cancer go away. He generally has a lot of anxiety. My 9 year old has been very quiet about the whole thing, although he has been extremely affectionate lately. They have seen my health improve greatly in the past 6 months and I think they worry less these days. I am figuring that for now, they need to focus on being kids and not worrying about their mom. If things go downhill for me, I figure I'll have time to talk to them more honestly...hopefully this will be many years down the road.
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Thanks everyone for all your support. I've just been in a slump where I can't turn my brain off thoughts of wanting so desparately to be here for my kids. For now, I'm just enjoying all the little moments of joy and soaking them all in like a sponge. I'll snap out of it. I've got 16 years until my daughter graduates high school, I have a lot of fighting to do.
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Hi everyone,
I've been feeling a little down lately and would love to hear all your voices out there. You all give me strength. How long have you all been survivors so far? It's been 11 months since diagnosis for me (although I should have been diagnosed much earlier) and I'm going strong.
Anne
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Sandra,
I'm so sorry to hear your news. I too have lumbar spine mets. For me the back pain, which was horrible, got much much better after just one chemo treatment. After chemo, avastin, and tarceva most of my bone mets have cleared up (2 to go). I'm sending good healing vibes your way.
Anne
Fear
in LC SURVIVORS
Posted
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