elnodel Posted August 19, 2004 Share Posted August 19, 2004 We went to the oncologist for the usual checkup after the third chemo. Len's doing very well with few side effects. Had to have neupogen after his white count was down post second treatment, then had neulasta after the third to prevent it from happening again. Today his red corpuscles were down so he got a procrit shot, but that's really been it. He'll have his final carbo/taxol treatment on the 30th of August. Then....well, we're not sure. Originally the oncologist wasn't considering anything more but he conferred with someone from Mass General about Len who recommended that he have radiation -- just to be sure. We talked about the pro's and con's and are in a complete state of indecision. We don't have to decide now; he thought Len should do another pulmonary function test after chemo; have xrays -- perhaps ct scan. Then discuss it. The possible long range side effects he mentioned -- permanent damage to the lung -- sound ominous but they're only possible. Len didn't really have any major side effects, other than the blood count dips, from the chemo, but then chemo isn't radiation. I'd really like to know what others' experience with radiation has been. I know that every experience is different but still... Confusedly, Ellen Quote Link to comment Share on other sites More sharing options...
Donna G Posted August 19, 2004 Share Posted August 19, 2004 I had chemo and radiation together before they did surgery. I really didn't have any problems with the radiation, did drop WBC's from chemo. Like you say we are not all the same. Donna G Quote Link to comment Share on other sites More sharing options...
BoBennett Posted August 19, 2004 Share Posted August 19, 2004 I see so many post/question that I want to respond to but I’m afraid that my suggestion may be the wrong one for the wrong person, so I can only talk of what I feel is a decision for me. Hope it helps At diagnosis my Onc was fairly consistent in saying that he didn’t want to put me through radiation as well as chemo. Radiation only if I needed it for pain. Now that the mets have responded, outside of the lung, he still hedges toward not having Radiation. Now that I’m more comfortable with knowledge of possible causes and possible curses as well as many of the harmful later effects of chemo and radiation I wouldn’t have radiation. That being said I’m too chicken to stop chemo even though I think that its as helpful as harmful . Like Donna said she had no problems with the radiation, sometimes its a crap shoot. Good luck in your fight. Quote Link to comment Share on other sites More sharing options...
Andrea Posted August 19, 2004 Share Posted August 19, 2004 Ellen, My mom, IIIA also, had the chemo, then surgery, and then radiation. They told us it was pretty common now to get that because they want to make suer there are no floating cells and focus on the area. Radiation was not too bad for my mom. It is the type of thing that was 5 weeks and got much worse at the end, and when she it bottom, it was done. Side effects aafter a few weeks for her were trouble swallowing, esophagus pain and fatigure. Quote Link to comment Share on other sites More sharing options...
gail p-m Posted August 19, 2004 Share Posted August 19, 2004 I can only tell you about my Dad's experience. He had a very difficult time with chemo. For him, radiation was a breeze -- 35 treatments, he drove himself to all of them (he didn't have to), towards the end of treatments, he thought he felt more tired than at the start.... I have noticed that his capacity to walk distances has been somewhat diminished but then again, he hasn't tried to build up his walking too much. He's 80 years old so I figure he's doing well all things considered. Good luck to you with your decisions. It's so hard to know and everyone is different. Quote Link to comment Share on other sites More sharing options...
elnodel Posted August 19, 2004 Author Share Posted August 19, 2004 Ellen,My mom, IIIA also, had the chemo, then surgery, and then radiation. They told us it was pretty common now to get that because they want to make suer there are no floating cells and focus on the area. Radiation was not too bad for my mom. It is the type of thing that was 5 weeks and got much worse at the end, and when she it bottom, it was done. Side effects aafter a few weeks for her were trouble swallowing, esophagus pain and fatigure. These were some of the side effects the oncologist cited -- they were, as he said, temporary. They sounded fairly horrible, compared with the "cakewalk" that chemo has proven to be for him, but nothing compared with the permanent damage that could be done to what is left of his lung (he had the upper right lobe removed) and the problem that might cause for breathing thereafter. I know that this is the worst possible case scenario and that he had to spell it out, but it still gave us real concern -- things have been going so well up to this point. As the onc. said, it's quite possible that there's nothing left in there -- there was only one lymph node other than the tumour in the lobe; both came out with the surgery. All the other nodes that the surgeon removed were fine. So maybe we're worrying about nothing. But any look at the case histories on this board show that there's plenty to worry about...so perhaps we should go for broke and make sure that anything in the lung is well and truly dead. Still, it's a predicament... I appreciate all your feedback -- thanks so much. Ellen Quote Link to comment Share on other sites More sharing options...
twodogs Posted August 20, 2004 Share Posted August 20, 2004 In my case we didn't have to go through much decision making. In just a matter of hours after my original diagnosis I was getting beamed up. I finished all treatments in December, including chemo and PCI. I am currently taking Epogen every other week for my anemia. Earlier this year I had what they call an "esophaegal dilation" to expand my throat and improve my ability to swallow. I believe the radiation scarring had caused it to become restricted. Still don't have a whole lot of ambition. I did make two driving trips earlier this summer. First was to the west coast and second was to Michigan. Not unbearable at all but nowhere near the fun it used to be. Probably not much help since the only real choice I had to make was to have the PCI. Quote Link to comment Share on other sites More sharing options...
Addie Posted August 20, 2004 Share Posted August 20, 2004 Ellen... I have small cell...so had no surgery...but I just finished 31 days of radiation concurrent with chemo. I have two cycles of chemo left yet. Even the double whammy of chemo AND radiation wasn't terribly intolerable. I was a bit more fatigued....and so you know, I'm almost 58 so I don't quite qualify for "spring chicken"! My onc had me go for an Amifostine (Ethyol) shot daily prior to radiation. The Amifostine protects the esophagus...and I feel like it helped me a great deal. By the last week to 10 days of radiation, I did sort of have that feeling of a "lump" in my throat...but it wasn't too bad. Then when radiation was finished...the very next day, it felt like I was trying to swallow around a two by four in my throat! But the day after that...it was a bit better...and by now, just 8 days after finishing radiation...I'm eating anything and everything and my throat feels fine....no more lumps or two by fours! If you're going to consider radiation...please ask about Len getting the Amifostine shots. They are expensive and from what I understand a lot of oncs don't even mention them because sometimes insurance is reluctant to pay...but ask your onc anyway! They don't work for everyone...but if his doc thinks Len might benefit...they are worth it. FWIW....the release I had to sign before starting radiation(spelling out all the possible side effects) was enough to scare ANYONE away from having it! It's on the order of prescription inserts...where they mention any and all possible side effects or contra-indications. But...odds are most of those side effects won't happen. They just have to cover their butts in case there ARE side effects. As well as Len has done with chemo...he may well do fine with radiation too. I have also done very well...no weight loss and minimal side effects thus far, from treatment. I get Neulasta shots each cycle...but my WBCs have yet to drop below the normal range....and my RBCs are a tad low, but I get Aranesp shots every two weeks for that! Not trying to "sell" radiation here....but if it otherwise seems a good idea for Len to have it...I'm just saying that as well as he's done with chemo, he may do equally well with radiation. And DO ask about the Amifostine! Good luck coming to a decision.....and I'm so glad Len is doing so well thus far! Quote Link to comment Share on other sites More sharing options...
Nushka Posted August 20, 2004 Share Posted August 20, 2004 My dx was the same as yours, IIIa. I had surgery, chemo and then radiation. The radiation wiped me out. I was exhausted easily but was never sick. I just slept alot. Now, one year later, I wheeze more often and am much more prone to bronchitis. I am told that what I received was not standard of care at the time but has since been determined to be the best way to handle what I had. Faced with the same decision I think I would do it again because it gave me an added edge. My throat was sore for a few weeks but I could still eat. Mostly just tired. The after effects are worse than the intitial ones to me. Still, like I said, I think I would do it again. I want the best odds I can get. Nina Quote Link to comment Share on other sites More sharing options...
NellW Posted August 20, 2004 Share Posted August 20, 2004 Hi Ellen, I don't have any wisdom on this issue, but I will surely say a prayer for you and Len to know what is best to do for him. Glad he is doing so well on the chemo. xxoo Quote Link to comment Share on other sites More sharing options...
gerbil runner Posted August 20, 2004 Share Posted August 20, 2004 My mom had radiation also. She had very few problems with eating - actually gained weight! But now she has radiation pneumonitis. Luckily, she's responding very well to the steroids and feeling better. Don't rule out radiation - it can be very effective. Do, however, treat any side effects promptly. Just my 2 cents. Quote Link to comment Share on other sites More sharing options...
elnodel Posted August 20, 2004 Author Share Posted August 20, 2004 Thank you, everyone, for your input. At least I begin to feel that we might be able to make a more informed judgement. The side effects sound worrisome but then they did before the chemo too.... I've begun doing some research to find out more about radiation. I noticed an ad in the New York Times last week for St. Vincent's Hospital's new lung cancer programme -- and went on their website. They do a "respiratory gating" radiation for lung radiation, but I don't know if anyone around here does or is it even makes any different. That, combined with stereotactic radiosurgery, the site said. Does anyone have experience with any of that? Or any other new radiation methods? Ellen Quote Link to comment Share on other sites More sharing options...
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