Support for LateToSchool

Parent Cafe
641

<p>LTS:</p>

<p>On thing that I have always admired about you is your utter integrity. Your latest post shows it so well. As for being emotional, that is part of the side effects of the treatment as much as your own feelings about the illness.
How wonderful, though, to love your work so much and to find it a constant source of strength and pleasure. Not many people feel that way about theirs.
Hope the rest of the week goes well.</p>

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<p>I imagine that some of the people who do not have good insurance/ supportive jobs do indeed start lying about all sorts of things in order to get their meds and such. </p>

<p>Have a good eveing LTS, and enjoy the rest you will get from having a good cathartic cry. Your strength and spirit is an inspiration to me.</p>

643

<p>Aw baby.</p>

<p>Aw baby.</p>

<p>non ce niente da dire.</p>

644

<p>Putting together fundraisers. WOW. Why am I not surprised? :)</p>

<p>I was raised by parents who taught me taking a pen home from work is STEALING :eek:, so I am with you on the no fraud stance; I am with you 100%. On the other hand, try not to get too upset when others are not as rigorous/evolved. Because I can imagine scenarios with horrific co-pays, bad employers about to axe the person, terrible financial stresses on the family, etc (such as you have told us about in fact) where suggesting fraud is a mercy to the ill person, to build up a cushion. I suspect that is why it is done as a matter of course.</p>

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<p>LTS, wishing you the best. Hugs and hope.</p>

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<p>LTS, </p>

<p>Your integrety, joie de vivre, and compassion leave me awe-struck
You are one in a million!</p>

<p>Wishing you a peaceful day!</p>

647

<p>LTS, the world of clinical trials will test you in new ways. They don’t necessarily respond quickly when you send an inquiry. The key is polite persistence, I think. When my father tried to get into various trials for his prostate cancer, weeks would go by with no reply from the group doing the trials. He wasn’t one for making phone calls and putting himself out there to get answers, but you will do it, I’m sure.</p>

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<p>I can certainly understand LTS’ horror at the suggestion of fraud, which goes against her very being, but SBMom presents the other side of the issue. Many, probably most, people with cancer are put into horrible financial straits because of structural problems in our society. I believe that most bankrupcies can be attributed to medical problems. I know someone now who was diagnosed with terminal cancer about two years ago. He has already outlived his original diagnosis, but he is in very bad shape at the moment. He has two HS-age daughters, and the family depends on him for medical insurance. He is not really able to work at this point, but shows up occasionally so that he and his family do not lose this essential benefit. He is also trying to make a certain date which will, if he lives and “works” that long, make a major difference in his pension situation. The man is barely in his 50’s, the family is about to lose the husband/father, and primary breadwinner. It’s a heartbreaking situation</p>

649

<p>LTS: I applaud your horror at the thought of “defrauding the system” and applying for social security disability while still able to work and contribute. The one thing I’d like to point out is that qualifying for Medicare (which I believe happens automatically once one is approved for social security disability) brings with it a “cap” if you will on all healthcare costs. Medicare much more so than any other “insurance plan” sets a maximum reimbursement amount for office visits, chemotherapy drugs, hospitalization, etc. and also can’t be maxed out. One’s assets are protected in that the maximum you will ever pay for care is the requisite 20% mandated by Medicare (if you don’t have a supplemental insurance plan). You can’t lose the insurance or hit a lifetime maximum. That being said, some excellent physicians will not accept Medicare patients for this very same reason. I work for a group of physicians in a suburb of Chicago and very few of our primary care physicians take new Medicare patients which I believe is a travesty. Consequently, this may limit your ability to be treated by the best physicians at the best treatment centers. </p>

<p>This may be one of the reasons that it has been suggested to you that you apply for disability benefits. I completely understand that working for you is inherent to your mental and physical well-being; I’m just trying to point out that there may be a legitimate reason behind this advice. </p>

<p>As a side note, I log onto CC each day to see how you’re doing. You are definitely an inspiration and my prayers are with you. I recently lost my 86-year-old mom to this same terrible disease. My best to you. C</p>

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<p>In case you soften on your thoughts about applying for social security disability, realize that it takes months and months for those papers to work through the system. If you’re denied in the first round as most are (I doubt you would be, but if
) wait times to see an Administrative Law Judge to appeal it run another 12-20 months around the country, depending on which regional office. </p>

<p>And you can always pull out of an application.</p>

<p>I believe you are still allowed to earn a partial amount each month. So if you don’t want to work full throttle but remain intellectually connected with your work team, that is possible. </p>

<p>Perhaps they find people who begin to not take their treatment program fully because they can’t “get off work” so the person’s encouragement to you to apply was wrongly placed. But she may be hearing, with frustration, people who should be in doctors’ offices who can’t make appointments readily due to workload. Since she’s a medical practitioner, that would frustrate her a lot.</p>

<p>Just arguing it from the opposite direction. I understand you love to work, and that may be your answer to the whole line of reasoning.</p>

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<p>You would not be defrauding the system to apply for disability. My family is teeming with examples of people who could have and should have. Chronic fatigue syndrome for 12 years–PTSD from Vietnam for 30 years–Asperger’s Syndrome for who-knows-how-long. But I do understand the hesitancy–I just don’t agree with it. You are doing such a great job with your life that I’d never second guess you. I’d just say that if you ever needed it, that’s what it’s there for.</p>

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<p>Hell will freeze over many times, Osama bin missing will sing America’s praises, and Bush will pull the troops out of Iraq long before I’ll ever apply for disability. Stone cold not happening. I think the person who advised me was thinking wow, look at this overlooked “free money”. I’m a long way from running out of money. But even if I weren’t I still wouldn’t apply for it. I cannot imagine anything worse than waking up in the morning with no mission, no responsibilities and no substantive interaction with others. I’d prefer to not wake up at all than to not have my work. </p>

<p>Jordansmom, I am sincerely very sorry about the loss of your mother. I also know what you say about medicare is true - I see signs and documents all over my oncologist’s office about medicare co-pays. I’m not up on the subject matter but apparently whatever has happened with it makes it very difficult for physicians to accept many of these patients
</p>

<p>NYMomof2 I am sorry about your friend who is terminal and not doing well. </p>

<p>Moominmoma, the world of trials is very odd indeed. First of all, the trial I’m considering isn’t even listed anywhere. The only way I found out about it was through a series of other connections on an unrelated matter. Then, there is no central database to go look for this stuff. Now I understand why on some of the cancer support forums people are telephone campaigning all the national cancer centers one at a time looking for trials. Many of them aren’t in any databases and then some of the ones that are in databases and are updated as recently confirmed as current do not exist. Disconnected telephone numbers, bad emails, etc. Last, I don’t know how people with even just average means manage to pay for them. The research funds pay for a lot of the stuff but there are still other things that the patient must pay for. PLUS it’s almost always necessary to travel to the trial site, which just has to be beyond many people’s budgets. </p>

<p>It’s no wonder we’re not seeing very much progress in some diseases - the trials cannot happen soon enough, and the FDA won’t approve anything unless it’s had a ton of trials and all compared against the standard of care, etc.</p>

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<p>LTS, For cancers like SCL where there is a clear unmet medical need, FDA does not require a large comparative PIII trials and will approve under expedite review (within six monts) based on an open-label PII trial. For SCL, that trial will only need about 150-200 patients. That said, few cancer drug trials out there will show enoguh activity to warrant an NDA (New Drug Application) to the FDA, let alone the record approval time seen with Gleevec.</p>

<p>For any trials under consideration, you do want to ask the lead investigator to gauge its optential effectiveness. Usually, the lead investigator can summarize activities seen in Phase I, and for something that has activity in SCL, I am sure that there will be quite a bit of buzz before a PII trial is started.</p>

<p>Please consider sending me a PM if when you are considering trials. I may be able to help obtain activity information for you. Best Wishes and have a good Thanksgiving.</p>

654

<p>Here are a couple websites that might be helpful for some readers of this thread:</p>

<p>[Clinical</a> Trials Home Page - National Cancer Institute](<a href=“http://www.cancer.gov/clinicaltrials]Clinical”>http://www.cancer.gov/clinicaltrials)</p>

<p><a href=“https://www.pparx.org/Intro.php[/url]”>https://www.pparx.org/Intro.php&lt;/a&gt;&lt;/p&gt;

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<p>Dear LTS: I understand your point about applying for any aid. I went to college with money from OVR because of life threatening asthma. They wanted me to apply for permanent disability, but I refused. Having to earn my own living is all that’s kept me from being an invalid. It’s been difficult but ell worth the difficulty. However, tuck it in the back of your mind should you ever feel differently. Pretty sure you won’t.</p>

<p>What an incredible testament to your resourcefulness: “I’m a long way from running out of money.” You go girl.</p>

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<p>

</p>

<p>Don’t mince words, LTS, just tell us what you’re thinking ;)</p>

<p>How wonderful to encounter someone who means what she says, and says what she means! I respect your feelings on this.</p>

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<p>. . . heal his patients" by Rafael Campo, M.D. (doctor, award-winning poet, and Harvard Medical School professor)</p>

<p>

</p>

<p><a href=“http://www.salon.com/health/feature/1999/12/08/poetry/index.html[/url]”>http://www.salon.com/health/feature/1999/12/08/poetry/index.html&lt;/a&gt;&lt;/p&gt;

<p>See also:<a href=“http://www.rafaelcampo.com/[/url]”>http://www.rafaelcampo.com/&lt;/a&gt;&lt;/p&gt;

658

<p>LTS: I understand where you are coming from on the disability/Medicare subject. It seems that you CAN work, you WANT to work, you DO HAVE good health insurance, and you, at this time, have the ability to travel to a drug trial, experts, second opinions. Yes, SSI takes time for approval, but you can apply once there is a need, and once approved it is retro to when you did apply. There is so much fraud rampant in applying, that you have to go with your conscience on this one. When you can’t work, and your insurance is close to the limit/max, apply. Given what you believe in, what you do, and how you live your life, just cast off the suggestion like you did the one about taking an antidepressant or the one about sleeping pills. There is a time and a place for everything. And now is not the time. </p>

<p>It might be worth going through the screening process for the trial, to see where you are ramdomized. I am guessing that a trial like this cannot be a double blind study and is open label, and if so, you CAN be screened, randomized and then decide whether you continue . I agree with padad, you CAN call the lead investigator and discuss. You can also ask who the principal investigators are and if there is a familiar name, call and discuss what they know, which may not be that much. Looks like padad is someone to PM! Gosh I love this board.</p>

<p>And I have said before, either here or in a PM, whey you have to cry, you just have to cry.</p>

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<p>Sunnyflorida, perhaps you did not mean to post what you did, or, perhaps I did not comprehend what you posted, but, you seem to think that there will come a time when I will no longer be able to work. I can certainly understand why you would think that - yesterday I received the ten year survival data from SEER and it’s 1%. (While some people may think that’s drastic news, I actually found it encouraging: the number isn’t “zero”, it’s 1%, for white females 45 - 49 and diagnosed 1992 - 1994, and in a representative slice of the U.S. Even better, it seems from the data, if one can manage to survive past the three year point, mortality drops considerably.)</p>

<p>You posted “now is not the time”; trust me when I tell you, there is NEVER going to be a time. Never. My work is a huge part of who I am. If there does come a time when it is absolutely impossible for me to do my work, then, quite frankly, I will no longer be interested in continuing to live. If I cannot live under a roof secured by my own earnings, or eat food purchased by the efforts of my labor, etc., then, I don’t want a house, or food, or anything else. I would prefer to die next month, homeless and alone on a park bench than live 10 comfortable years on disability, separated from my work. I am completely polarized in my position on this and there will never be any reconsideration, under any circumstances. </p>

<p>FYI I am trying to steer a path away from things that make me cry, and instead trying to focus on positive, productive exchanges and ways I might be able to win this. Epistrophy, thank you for your post, I appreciate it, information/articles like that help me a LOT. </p>

<p>Padad, thank you for the offer. It seems to me that the dangerous time is once treatment is completed, and the initial three months and the wait for scans. That is when the cancer comes back and the greatest number of people die, from what I can tell. This also seems to be supported in the stats - I had the SEER statisticians run some numbers for me last week and, while significant numbers of people die in the first year, the largest number seem to come from the time period just after first line treatment ends. So, I am specifically looking for trials that offer vaccines or other remedies with the intention of heading off the recurrance, but also without compromising the second line standard of care treatment, should it be needed. I have asked my oncologist before but he wants to focus on the “here and now” and does not wish to speculate on six months out. Of course, he has also emphatically stated that his intention is a “cure” in my case, so, perhaps he is being very optimistic and thinking trials won’t be necessary (???). (I am assuming a lot here too - I am assuming that by the end of treatment I will be assessed as having a “complete response”.)</p>

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<p>I wonder if there is a trial out there that is looking for a test, other than scans, that can identifiy whether the treatment is working, or a just completed treatment worked? It seems in waiting three months for the scans, if the treatment didn’t work at all, it allows the cancer to get a hold. (And that’s what happened to my husband with his lymphoma, they completed the bone marrow transplant, and would go in for blood tests and see doctors, but it wasn’t until the scan three months out that they found it didn’t work.) I know for thyroid cancer there is a blood test (that was new 18 years ago when I had thyroid cancer) that detects the cancer cells. (My doctor calls it the thyroglobulin test. Back in the day, one had to go off your synthetic thyroid pills for a month, get very tired from the lack of thyroid, and then get a scan to see if the cancer was still gone. But then came the simple blood test. It’s great.) Is there a test they are trialing that would do something similar for lung cancer? If you were on a trial that runs other tests after the treatment to ensure it worked, they would be able to catch a recurrance early enough that other proven treatment could be beneficial.</p>