ljdub
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Posts posted by ljdub
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Honestly Beth, things DO seem to have a way of happening to you and have right along, but you always completely amaze me by your ability to laugh and be funny in the face of whatever stuff is being thrown at you. I have SO much admiration for your way of handling whatever setbacks come your way, but I truly do feel you are WAY overdue for something good, so I'm putting my money on a clear MRI. If it takes getting there in a snowstorm to get a clear MRI, I'll wish that for you! I'll be sending good thoughts to you, my special buddy - just be careful and get there safe!
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WOW! You sound as stunned as I was to read this wonderful news! I had no idea there could be such incredible results and I am so HAPPY for you! Congratulations and I add my happy dance to all the others for you!
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Hi MaryAnne, I also had the carbo/taxol regime but mine was once a week for six weeks. So they did a new IV each time I went in. It took about 4-5 hours the first time for them to first put in the drugs they use to prevent nausea, etc. and then the chemo drugs, but I tolerated it well so they were able to speed up the infusion. After the first time it usually only took about 3 hours total. I hope it all goes well!
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I will definitely add my prayers to so many others that your mom will see spectacular results and will soon begin feeling so much better. You'll be in my prayers, too, as someone who is such a wonderful support for her.
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NED!
in NSCLC GROUP
I mostly lurk about and commiserate in my heart when I read about the struggles of so many on this board, and celebrate the good news when that happens, as well. I try to offer helpful info when I can, which doesn't seem to happen nearly often enough. But, I wanted to share a bit of good news.
Went to Mayo yesterday for a full body scan and everything is clear - I was pronounced NED, sweet music to our ears! I'm sharing this great news hoping that it will be a bit of good news and might offer others hope. We all need to hear about the good things and share those, too, and I know how blessed I am by the support I've received from many here. (especially you, Beth!) So, my thanks to all of you, and I hope and pray for good things for all of you, as well!
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As you can see from my profile, I am 9 months out from surgery and still don't have my normal voice back. I guess I'm thinking I never will at this point. Mine also got deeper, and raspy a lot, especially the more talking that I do. Unfortunately I have to speak in front of large groups fairly regularly, and even with a glass of water by me constantly I find my voice getting more and more raspy or even giving out. My surgery also was only for the lungs rather than near the vocal chords, except I did have a mediastinoscopy to determine involvement of the lymph nodes in the mediastinum/hilar area. The raspiness didn't seem as bad after that smaller surgery as it did after the larger one when they removed the lobes, but maybe it was cumulative? I have been putting it down to the tubes they put down your throat during surgery and just figured maybe for some percentage of patients the irritation/damage to the vocal chords is permanent. I could be way off base, but that was my thought process. I see my oncologist Tues for the 2nd scan since I finished treatment and I've felt pretty normal for a while now after finishing chemo and radiation, but I plan to ask him about the voice, hot flashes, achy joints and other assorted things that seem new since all of this began! Also, I can tell you, I stayed on the fentanyl patch for months after finishing treatment - it was so effective and didn't make me sick or loopy like vicodin or percoset, but it allowed me to get back to work and even feel pretty human during the long healing process. I thought it was a miracle how much better it would make me feel when i was still recovering from all the assaults on my body. Hope all this helps answer a couple of your questions - other answers will follow if I get any! Best wishes to Joel and to you!
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On the other side of the coin, I've had an amazing number of people (mostly volunteers that I work with) come and tell me their stories of being cancer survivors, for 5, 10, 20 years or more. I was astonished at how many of them had been through cancer and came out on the other side, and they were so pleased to be able to share with me their success stories as a way of giving me hope and support. I've found these people to be much more common than those who want only to hear tales of woe. Maybe I've just been lucky with the people who have chosen to talk with me about it, and for that I'm grateful. People seem to want to give me nothing but positive messages - they've been truly amazing!
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Hi Herman, I don't post often but mostly just lurk and read, but when I saw your parents were considering Mayo in Scottsdale, I just had to respond that I think it was the best decision I ever made to go there for my cancer treatment. I see Doc Hogan there, and think he is wonderful. I have been so impressed with the whole way of operating there; I can't say enough good things about them. They have been available 24/7 for any questions or concerns I have had, and I live 2 hours the other direction from the Clinic (Prescott). Dr. Hogan is my oncologist and Dr. Vora my radiation oncologist - they are both terrific. I will keep your whole family in my prayers as you go on this journey together.
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There is NO reason for you to have to beg for medications to relieve your pain - this is obviously a sticking point for your particular doctor and frankly, is an old-fashioned and outmoded way of looking at it. Fear of creating a bunch of addicts post surgery is ridiculous. One of the things ALL my caregivers stressed was that keeping in front of/on top of the pain was key, and that it was much easier to control BEFORE it got bad, than to try to catch up once it was hurting badly. They've actually found (so I've been told) that patients take LESS medication than expected when they're given some control over it, and obviously confirmed what seems obvious - it's different for every patient, with some needing more and longer than others. I work in a hospital so this is the opinion of more than just a few - this is system-wide where I work, and the comfort of the patient is of paramount importance. While you're recovering, you should have the meds you need to ensure your body can use its resources for HEALING, not for fighting terrible pain and stressing about the number of pills you have left. I would DEFINITELY pursue with physicians, case managers from your insurance company - anyone who can help get you the relief you need. But be assured, this is NOT the standard everywhere - just with your doc, it appears. Best of luck with getting some help!
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Hi Beth - I've held off writing since I had a bad week, too, but sent you a pm just now. Hope the percosets are having the desired effect and giving you some peace. Please take good care - I'm keeping you in my prayers. Lynnel
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Wonderful news for you! It is always heartening to see someone get some GOOD news on this site. I'm glad for you and wish you continued clear scans in the future. Yes, enjoy the next few months!
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I was really hoping for no lights at all and I'm sorry that didn't turn out to be the case. I had carbo/taxol chemo which I finished last week and I have to say it wasn't bad at all. I had much worse effects with the radiation. I didn't have the gemzar/navelbine so can't speak to that directly, but thought I'd at least say the chemo I DID have wasn't a terrible experience. Don't know if that helps with your decision but unfortunately that's one we all have to make individually, I guess. I will be adding my prayers to so many others on this site to give you strength and guidance as you make these choices.
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Thanks to you that responded, and yes, you helped me make some decisions! I appreciate this site and the wonderful people on it so much!
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For those of you with early stage who also were recommended either chemo or radiation, I'd like to know how many radiation treatments were recommended, either alone or in conjunction with chemo treatments. Thanks for your feedback!
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Perhaps this isn't the best time for me to be answering your post - this past weekend has been the worst I've had and I don't want to be the bearer of downer news, however........ I do want to be honest and at least owe you that kind of answer. I've had four chemo treatments - mine are supposed to be low dose and once a week for the 6 weeks I do radiation. I would say I feel kind of "funky" the day of chemo, and I certainly tire more quickly the rest of the time, but they tell me that's normal, too. I haven't had any vomiting but I think they've gotten the pre-meds etc. down to a real science to try to prevent that for most people. You didn't say which chemo plan your mom is on - for me it's taxol and carboplatin. Prepare her for the hair loss - strands are following me around falling to the ground wherever I go. So she needs to be prepared for that. I didn't expect joint aches, but had some of that - mostly in my hips. Have read here that that's pretty typical, too.
More than the chemo, I think it's the rad that's bothering me, which was a surprise. I tolerated the rad well at first but seeing everyone post about the cumulative effects helps explain why I felt so lousy this weekend. The part the med profs mention but don't really tell you thoroughly what to expect, so far for ME, anyhow, is the tennis ball stuck in your neck/chest feeling. It's been terrible for me the last few days. Problem is, it NEVER goes away, so it's not just a swallowing thing. It certainly does DETER you from wanting to eat, but also drink, even sips of water, which means danger of dehydration. It hurts bad enough to think you could be having a heart attack. They prescribed Aciphex for indigestion/acid reflux that I never had before, but so far its done nothing, nor has Prilosec, Zantac, or anything. I would help your mom to be aware that these are some of the things that can and apparently frequently do happen. This site has been invaluable with advice, and everyone has been so helpful with making me think I'm not crazy but going through very typical stuff, so it's a very smart thing to do to ask any questions here and let all these wonderful people share their experiences. The best thing you can do is to stay informed, and the people here are the best at helping with advise on how to do that. Sending good thoughts to you and your mom.
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Hi there, your story sounds similar to mine in that we went into surgery expecting stage 1, just the lower right lobe, but there was a lymph node sitting right on the middle lobe that looked suspicious so the surgeon took the middle lobe as well. So they staged me a 2A. They initially didn't think they'd recommend chemo or radiation, but did suggest I might be interested in a clinical trial of Iressa, which they are studying for effects on earlier stage lc. Ordered a PET scan to see what else might show up. As it turned out, a lymph node in the hilar area lit up and there was another in the mediastinum that was "inconclusive", so that meant I went to stage 3A. They then said I definitely needed chemo and radiation, which I am now 2/3 done with. I would definitely question them about this...are there other health conditions which might make it tougher for you to handle the chemo/rad? I myself haven't needed any oxygen treatment at all and I think you said you did, so maybe there is something else going on that makes them advise against it. I'd certainly ASK though! Sending prayers to you
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I'm not sure if the clinical trial you said had closed is the same one, but my oncologist at the Mayo Clinic - Arizona - was suggesting I get in their clinical trial for Iressa when I first saw him in May. I was diagnosed with earlier stage lc and I think this trial may be to explore that use to go along with the usual use in later stage lc. In the end I was restaged and am doing radiation and chemo because PET showed one or two lymph nodes "hot", so we put any thought of the trial for Iressa on backburner for now. It might be worth checking it out, though, I know they had a clinical trial going as recently as June through Mayo. May enable someone to get it without the exhorbitant cost. Good luck!
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I haven't been in your situation, but I keep tabs on the early stage postings so I can be informed about what others are have happening and offer support if I'm able. Do I take it they did no chemo - radiation only? Just thought if they restaged you after surgery (lymph involvement? that's what happened to me) maybe they would have suggested chemo to take care of any errant cells floating around. That's what they did in my case - radiation directed at the node that lit up on the PET scan, but chemo in case cancer was floating around looking for somewhere else to take root - such as adrenals..... currently I've had 3 chemo treatments out of 6 planned. I'm curious what they advised you.
Also, I'd still keep hoping that even tho you have the lc history, that doesn't mean your adrenal can't have adenoma or anything else someone without our history could have. It could still be nothing to worry about, and that's what I'll keep praying and sending positive thoughts out into the universe for you. Please come back and let me know what the biopsy shows.
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I feel like a complete whiner asking about this when so many are dealing with so many more serious issues, but I want to know if sudden onset of extreme indigestion problems is common after surgery, and/or after beginning chemo and radiation treatments. It's been getting steadily worse and today had me doubled over occasionally - it's lasted all weekend. I'm already taking a Prilosec in the morning and gaviscon or anything that might help, but it never really goes away. I never had this at all prior to starting treatment for lc. Any help or advice would be appreciated!
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I'm so very sorry to hear the news of a turn for the worse, but am keeping you, your Robert, Alex and all your family in my prayers. Hospice workers and volunteers are true angels - they have such a special gift of compassion. I will pray for peace for you all.
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Hi Rich, I see you seem still to be looking for options in lieu of surgery, and i'll be interested in the replies you get, as well. Too late for me, I had the surgery in May and am glad I did, but the one thing I said in my very first post was that it all seemed to be moving so quickly, I didn't have time to think before my gp was referring me to a surgeon, and then on to an oncologist. I think I would have held out for a little more time to explore options if I had it to do again, but then again, once you know it's there it's natural to want it OUT of there, if that's an option. I have also seen the posts about the cancer specialty centers, and there seem to be mixed reports about the results, but I can tell you that I feel very fortunate to be living in close proximity to the Mayo Clinic and their cancer center here in Arizona. Their professionalism has been very impressive, and I found it reassuring that they see SO many people with our disease. I wanted someone who does this kind of thing all day long, has much experience in the field, and who I was confident would be up on the latest developments, etc. I feel comfortable that I found that at Mayo. Wishing you the best in your search for the right answers for you.
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Hi Jamie, I'm mostly a lurker but thought I'd answer your question as best I can. (BTW, I was shocked to hear how many people had their epidural come out - I thought that was an unusually weird thing that just happened to me - and because it hurt so badly to breathe I ended up on a Bipap machine, just short of being put on a respirator, until we found the problem and got me on pain meds that allowed me to take breaths - apparently it's not that uncommon - but it SHOULD be!)
Anyhow, I frequently have to walk several miles a day in my job, although I can usually pace myself some and stop briefly if I need to, and I often carry things and/or push carts, tho admittedly not particularly heavy ones. Maybe not as strenuous as your dad's jobs, but I just wanted to say that just after surgery I was very afraid that even a LITTLE walking would be out of my reach and I could never go back and function in my job. I just want to reassure you and your dad, and to say, DON'T panic if the slightest exertion brings on extreme shortness of breath. It's very temporary! I had 2 lobes removed, and at 9 weeks out from surgery I can do anything I want to do short of major exercise sessions. I worked very hard with the spiro-thingy inhaling to move the balls, and it paid off. I have excellent blood oxygen levels and with continued work, I expect to be able to do most anything I did before. I'm betting the same will be true for your dad, but remember not to panic if he gets very short of breath just at first! I'm sending lots of healing thoughts to him. He's lucky to have you there with him - my daughter/best friend moved TO Chicago last fall- it's the first time we've been really apart, but she came and was my caregiver after surgery, bless her. I know your support must mean so much to your dad!
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Hi there! I, too, questioned the need for surgery and/or was interested in other options, but my surgeon was straight up with me....surgery offers the best chance for a cure. I was thought to be stage 1, ended up stage 2 because of a lymph node found during surgery, but still, he and my oncologist tell me "I am at very high risk for living a very long life". When they tell you that, it's hard to argue! Also, in reading the posts on this site I have since come to appreciate how very lucky I am that surgery WAS an option, since many are not so lucky. I have to say, prior to diagnosis I was a life-long believer that I would refuse extreme measures (extensive courses of chemo, etc.) because I also kept hearing and reading the survival stats were so bad for some (not all) kinds of cancer, vs what was given up in quality/extension of life. I know not everyone agrees with me on that, and it's a very personal choice. At this point, I agreed to a course of radiation and a low dose 6 week course of chemo, and just finished in my 1st week of that. The expectation is that these adjuvant treatments after my successful surgery will cure me. If not, then that is something I will have to address as we go along. But I will say, as far as the surgery, it was a bear, but outside of the first few days, pretty tolerable, and I made a fantastic recovery. I am now 9 weeks post surgery, and there isn't really anything I can't do, except exercise really heavily. I have no residual pain and my movement isn't inhibited at all. If I try to exercise too heavily, I get short of breath, but then I did that BEFORE surgery! My advice, along with most of the others, is have the surgery if it's an option, and get that nasty stuff OUT of there, AND don't try to be brave - ask for all the pain meds you can get - it will truly get you through until you can do some healing. I was off all pain meds at 5 weeks, but I can't imagine it without them for the first 2 - 3 weeks, anyhow. I, along with so many other supporters here, will be waiting to hear how you are doing.
age 50, dx 4/04 adenocarcinoma - 3 cm tumor right lower lobe
4/15 mediastinoscopy - benign
4/29 thorocotomy right middle and lower lobes - found right hilar lymph
involvement
6/04 - radiation and carbo/taxol - six weeks
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I'd like to ask about the side effects you experienced with carbo/taxol. I just began these two chemo drugs and am wondering about others' experiences with them. Thanks!
The Bar is OPEN
in NSCLC GROUP
Posted
I was thinking a pina colada and imagining a sunny beach somewhere, but now I'm thinking the Orgasma sounds like just the ticket - yummmm!