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Adrian

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Everything posted by Adrian

  1. Adrian

    What about

    I'm on board with that. Some oncs are very much against excessive vitamin use/supplementation as they can be "contra-indicated" (i.e. interfere with chemo). Work out, stay healthy, keep us in the loop!
  2. Adrian

    What about

    I have a mixed view on this. Nutrition/exercising your way to "beating" cancer is a farce. On the other hand, if you are ABLE to keep your appetite, maintain weight, stay strong/active and able to exercise, then you ARE beating cancer. .. my father iwas committed (his entire adult life) to diet exercise and healthy living. Within a few rounds of chemo and WBR, it was just out of the question. Hope that doesn't sound negative, what I mean to say is, you are certainly better off if you are able to exercise and eat healthily through chemo.
  3. Adrian

    Nosebleeds

    shortly after my dad was off avastin and on to alimta he had a barn burner nose bleed, the likes of which I've never seen. Took five hours to clot and we actually had to go to the ER.
  4. by the way, is she on Zometa for the bone mets? that's standard protocol, but just wanted to be sure.
  5. Johnny, could you fill out your sig line with treatment history? Sounds like your mom's first line treatment was chemo+avastin and your mom progressed on Avastin alone. According to what you wrote, she was stable for some period of time on that regimen. That's good. My dad progressed right through his first line treatment. Obviously news of progression stinks, but failure on first round chemo happens and you have several very interesting options behind it. Alimta is one of the newer approved chemotherapies out there. I know dr. west (www.cancergrace.org) has spoken of some patients being stable with advanced disease for a considerable period of time (years) on Alimta. I think I would ask your onc about the possibility of combining alimta and erbitux (a new non-chemo treatment that was shown this year to increase progression free survivial). I did a quick check on www.clinicaltrials.gov and found that, in fact, there is an enrolling clinical trial for second line alimta + erbitux: http://www.clinicaltrials.gov/ct2/show/ ... tux&rank=1 Behind alimta is tarceva which as far as current lung cancer treatment goes is like playing the lottery as when it works --- man does it work. So now is not the time to get weak kneed, though it sounds like your dr. is a bit of a schmuck. Let us know how we can help.
  6. especially for the first round of getting the chest x ray/CT, don't get too hung up on where you get, just get it. Get this looked at now, and hopefully you have "good luck" reserves built up from past, above mentioned "bad luck." Spitting up a little blood doesn't guarantee lung cancer by any stretch, but it is a red flag that must be investigated. Get this taken care of. Report back. We even want to know when your appointment is scheduled!
  7. just looking over my dad's history, it occurred to me to also advise that each medication she is on be assessed for fatigue potential. My father was getting wrecked by ativan and he was also very sensitive to some of the longer lasting opiates.
  8. The reason B12/folic acid supplements are given when on alimta is that one of alimta's operative effects is to shut down the body's natural production of folic acid/b-12, so the supplements are meant to --- you guessed it, supplement --- the loss of those naturally occurring nutrients. When my poor father was suffering through this, his biggest issue was an absolute debilitating fatigue (he also had had WBR). We tried everything. We put him on a regular dose of the steroid prednisone (that actually worked well for a short while). We also had some ADD type stimulant -- one of the real cutting edge ones, forgot the name --- prescribed. We also had them check for hypothyroidism which can also cause debilitating fatigue. In all honesty, we never found anything that did the trick for my dad, but nothing was lost in tying.
  9. Adrian

    Leroy Sievers

    mom called me crying this morning to tell me the bad news. I read his blog every morning, first thing. It was clear that things were coming to a head. He was such a genuine human being. Another good one gone too soon.
  10. echo what Ned said re: chemo: carboplatin and cisplatin are both "paltinum based" chemotherapy. The Europeans favor Cisplatin, Americans, carboplatin. It's thought that cisplatin is slightly more potent (at the margins) but is also a bit more toxic than carboplatin. Doctor is probably favoring cisplatin for your husband because she thinks he is up to it (which I'm sure he is).
  11. couple things I want to say. First, 50% reduction is awesome! and is a great sign as Dr. West has made it quite clear through his posts that "responders respond." That is to say, that people who have good responses to one kind of chemo or "anti-cancer treatment" often have a positive response to other chemo treatments down the line. (The converse is also often true -- non-responders tend never to respond, unfortunately, as was the case with my poor father). 4 to 6 rounds of first line chemo is aboslutley the norm. Dr. West and the other Dr.'s on CancerGrace have discussed this in depth throughout the board. But as Dr. West recently pointed out, there is new compelling research showing that it may be a good idea after 4-6 rounds of one chemo regimen to dive in immediately to "second line" chemo, if the patient is up to it. (The "traditional" approach was after first line chemo completed to wait until there was cancer growth before starting second round treatment) Beginning second round chemo straight away may be an option to discuss with your oncologist.
  12. Adrian

    Paul Newman

    Exactly Shellit, my dad's "smoker's lung cancer" came over 35 years after he had quit and had been living as healthily as anyone out there.
  13. Adrian

    Paul Newman

    quite aggravated on a related instance of lung cancer in the media. I'm a golf fanatic and during the US Open there was an event in which three celebrity golfers and one additional decently skilled civillian golferwere selected to play the US Open course to see just how difficult the course would be for an average player. So they guy they chose was this really inspiring guy who has stage 4 lung cancer. Every single time the disease was brought up they said he has "non-smokers" lung cancer. Of course there are many "never smokers" who have lung cancer, but I found it annoying that they kept on referring to it as if that were a clinical category of lung cancer, distinct both treatment wise and morally from the rest of lung cancer sufferers. Like we should feel compassion for this guy but not for the ex smoker and even the current smoker who brought this on themselves . . . I think it would be interesting to gauge people's reactions if they knew that the clinical dividing threshold of being a never-smoker is 100 cigarettes in a lifetime.
  14. Just to throw my lot in here: You have coughed up blood, persistent wheezing/coughing nausea, the antibiotics are not working and you have a significant smoking history. That your doctor is not now pushing for at least an immediate X-ray is borderline malpractice. Bee, you NEED to go to the ER --- perhaps TODAY. Obviously, we don't know if you have LUNG CANCER or not, but all of us agree that the delay here has to come to a stop. This doctor's pushing dates off isn't bad for HER health, and she has pretty much demonstrated that she doesn't care. But this could have HUGE implications for yours, time to take control. You go to the ER and don't leave until you have an X ray or better a CT taken.
  15. yes, I know exactly how you feel. I am sorry for both of us.
  16. Two things. 1. MAKE SURE HE IS GETTING FLUID. it may even make sense to take him in to the doctor to get him on an IV to get h8im hydrated. 2. Is he on pain medications? which? Some can definitely cause hallucinations and have psychologucal effect. My father at certain points was on pain medicines that really impacted him psychologically (talking nonsense and the like). Have your onc. fiddle with his medicines. It is very scary and lonely to see one's father in that state. Be strong.
  17. I should also add that you should definitely check out www.onctalk.com. I know Dr. West is not a big fan of RFA on lung tumors as---if memory serves-- there is evidence of lung bleeding related deaths resulting from the procedure (or soemthing else really bad, can't remember). For sure he thinks traditional radiation is the better supported treatment option when local treatment on lung tumor is required.
  18. Hi Shannon, First, I'm sorry for your mom's recent diagnosis, but given recent advances, you have reason to be hopeful. here's the deal. RFA is a promising LOCAL treatment. It kills individual tumors by burning them up from the inside. There are lots of other effective ways to kill tumors locally. Traditional radiation, certain kinds of freezing treatments, and of course, the gold standard, surgery. What's hard to wrap one's mind around when you're new to the cancer game is that at stage IV, local treatment no longer does the trick. At stage IV, there are cancer cells floating around the blood stream. So you can radiate an individual tumor in the lung, or even cut out the lung, and the cancer cells are still in the body and can eventually "land" and form new tumor sites. Because of that, at Stage IV, the usual standard of care focuses on SYSTEMIC and whole body treatment which (hopefully) attack cancer cells throughout the body, whereever they may be. The most traditional systemic treat is any of a number of chemotherapies. There are some newer, slighlty more effective chemos out there which your onc will know all about. There is also a new breed of targetted drugs which your onc will also know all about (targetted here means the though the treatment is sysytemic, the medicine, unlike chemo, attacks ONLY cancer cells and not noraml/healthy cells). One of these drugs, Avastin can be used in conjunction with chemo and then by itself (sometimes for more than a year). Tarceva is another that when it works, works better than ANYTHING out there. In sum, once stage IV, local treatments (besides brain radiation) is reserved for when a partivcular tumor is causing pain or othr is threatening to do damage---otherwise, systemic treatments will be the only meaningful way to address the cancer. best of luck. keep us posted.
  19. btw, I see from your into post that the onc told you "possible stage 3" and mostly fluid. If it is staged by numbers than the onc at least suspects it is non-small cell lung cancer. the fact that its mostly fluid suggest that there is pleural effusion. If their are cancer cells in that fluid, than the stage is IIIB.
  20. Couple questions. First: non samall cell or small cell lung cancer? Second question: are these the only potential tumors outside her lungs or are there other potential metastasis (i.e on the liver, bones or spine?). Are the potential brain mets currently symptomatic (e.g. headaches, blurred vision, balance problems)? If so, I'd rpobably be far more willing to get treatment sooner rather than wait. One additional point to put out there that would definitely affect my thinking. With brain radiaition, there is "whole brain radiation" (WBR) and various targetted forms of brain radiation. The targetted brain radiations are great for taking out individual brain tumors and very easy/quick with little if any side effects. And can be done on an as needed basis (e.g. on multiple metastasis as they appear) Whole Brain Radiaition is for extensive mets or lots of little tumor seeds. Usually you have 15 or so sessions of radiation (sometimes more depending on dose), but it's a one time deal. (if the mets come back, you can't do WBR again). In small cell lc, Its now established that WBR makes the brain a less hospitable place for SCLC, so its become extremely common for extensive SCLC patients to get WBR before brain mets have even been detected. But, WBR is a witch. Its just necessary sometimes. If I were in your shoes I'd be FAR more inclined to seriously consider a targetted radiation---and if she were asymptomatic, I'd be pretty willing to wait and see for 6 weeks.t I would only do WBR if my onc was fairly certain that the spots werte acutally mets. keep us posted.
  21. My dad who at diagnosis had stage IV NSCLC w/ brain mets was in a phase II clinical trial for chemo+avastin, looking at the efficacy of chemo+avastin in NSCLC patients with treated brain mets. As Ned pointed out above, avastin has not yet been approved for NSCLC patients with brain mets. Because of the increased risk of bleeding and clotting issues with avastin, the thought is that brain bleeding as a result of untreated brain mets could result in aneurisms and the like. Even though its a clinical trial, in the last five years Avastin is one of the most imprtant cancer drugs to come to market and has a proven medical benefit in advanced NSCLC generally. Unfortunately for my dad (and us), the cancer progressed pretty quickly despite this (and all other) treatment, but he didn't have any brain bleeding related issues that came out of his avastin use (besides one scary nose bleed event). For first line treatmenet, avastin/chemo is the current state of the art. And because your mom has treated brain mets, chemo/avastin is beyond the current state of the art. It's the best you can do. Good luck, keep us posted.
  22. Adrian

    Hello

    As long as he goes along for the treatment, let him be in all the denial he wants. Sounds like your treatment plan is well in order. Wonderful that surgery is a likely option after chemo.
  23. yes radio frequency ablation uses radio waves to heat up tumors and essentially burn them out from the inside. It's a local treatment---like radiation. If you have metastatic cancer, then RFA only makes sense if some particular tumor is causing pain or threatening to do damage (e.g. compromise the spine). Avastin: As mentioned above, its not for people with squamous type. Its a recent non-chemo therapy which in the most simplistic terms, functions by blocking the formation of the blood vessels support tumor growth. Others also mentioned Tarceva and have described it correctly. It has "third line approval' which means that its one of the few cancer therapies that the FDA has determined is a proven option to use after two prior lines of treatments have been tried and failed. For some people, Tarceva is the golden ticket and has given them profound tumor shrinkage and prolonged periods of progression free survival (e.g. periods of time where the cancer is not getting any worse). As noted by Randy, women, with adeno type cancer who are of Asian descent and have never smoked (i.e. less than 100 cigarettes in a lifetime) are the sub-group most likely to have the most dramatic results with Tarceva. But there are some non-smoking asian women who get no results from Tarceva and some people who don't fit under that classification who have benfitted quite a bit: including squamous type sufferers. I'd alos like to point you over to www.onctalk.com where you can learn everything you could realistically want to know and interface with a set of doctorsd who can answer any questions you might have (spearheaded by the incredible Dr. West.)
  24. marinal and megace are the two usual meds used for appetite stimulation (as is decadron). You may want to revisit the possibility of decadron, only in a lower dosage, becuase it can give people a nice energy boost as well as increase appetite. I would also re-emphasize the importance of keeping her hydrated as the chemo-0radiated patient is especially inc;lined towards dehydration, and its symptoms have very palpable and uncomfortable side effects that are sometimes mistakenly attributed to side-effects of the chemo and radiation themselves.
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