Support for LateToSchool

Parent Cafe
1281

<p>Goodnight noises everywhere.</p>

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<p>Latetoschool, I hope you are watching peaceful dreams as I write this. Your perseverance is amazing, and I’m glad your quest for a new doctor is coming to a conclusion. Intuition is a powerful thing. Several years ago, I had some (minor) health problems. Being always healthy and fairly young, the only doctor I was seeing regularly was my dentist. I started my search for a doctor who’d be willing to find out what the heck was going with me, and it was not an easy task! I ran away from a very modern, well equipped clinic where I felt all the doctors and their assistants were robot-like. I ran away from the sappy doctor who was trying to reassure me that his wife had problems similar to mine (I later compared notes with one of my co-workers and discovered that the doc’s wife was suffering from my co-worker’s ailment, too). Finally I settled for an older doctor who was not just ordering more tests, but was actually going through the results with me and trying to put together a treatment plan! I trusted my instinct that this guy was the doctor for me…
Sleep well. As always, you are in my prayers.</p>

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<p><a href=“http://www.timescall.com/Health-Story.asp?id=6019[/url]”>http://www.timescall.com/Health-Story.asp?id=6019&lt;/a&gt;&lt;/p&gt;

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<p><a href=“http://news.enquirer.com/apps/pbcs.dll/article?AID=/20080129/NEWS0105/801290392/1061/NEWS01[/url]”>http://news.enquirer.com/apps/pbcs.dll/article?AID=/20080129/NEWS0105/801290392/1061/NEWS01&lt;/a&gt;&lt;/p&gt;

1284

<p>LTS, Good morning! Our roads are filled with ice this morning, and our emergency room is all tied up with traffic accident-related cases.</p>

<p>Wish you a good day.</p>

1285

<p>LTS, has the progression been confirmed? Are you having a CT scan before starting treatment?</p>

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<p>NYMomof2, progression was indicated only with a PET scan and no corresponding CT. My new doctor is not wanting to do any scanning now - except a brain MRI to make sure that’s still clean, and this is primarily because this cancer does go to the brain quickly and he doesn’t want to risk a seizure or something during treatment. (I guess the other doctor didn’t care about this because he decided I was pretty much dead anyway.) I had a clean brain MRI in September but no guarantee everything is still the same. He will have CT/PET scans after two more cycles of treatment. </p>

<p>Progression is now questionable because blood work comes back “normal”, the areas in question aren’t logical for mets, and in any case I was having some aches and pains in those areas that are now gone, and performance status doesn’t match the report. But even if there is/was progression there is an overall minimal amount of disease left, according to my new doctor. </p>

<p>I don’t know how to measure this optimistic point of view against that of the immediately previous doctor who decided I was already dead, but
I guess I have to measure it in terms of how I feel physically. I feel fine, normal, outside of being just simply exhausted from the stress of the last two weeks. But I am also no longer worried and frightened. </p>

<p>I did talk to the long term survivor in Texas last night; I told him the whole story. He is a huge fan of Topotecan because that was his last chemotherapy five years ago. He is in total agreement with me and even agrees that the reprimand from the medical board is not a big deal and would not bother him. Also, he told me it was a smart decision to move quickly away from the first doctor; he told me that what would happen is that the doctor would do the second line, and then if there was progression or a relapse (the second is almost a certainty with sclc) the doctor would say “treatment over, there is nothing more we can do”. He also agreed with me is that the best possibility to recover from this is if the envelope is really pushed - his doctors did with him; they aggressively treated him. If they had gone strictly by the book, he would likely not be here today. Even though he is five years out, he follows this subject matter very closely and stays very current. He is keeping himself educated and prepared - eventual relapse.</p>

<p>I did sleep well last night. My daughter arrives from Miami today; she will stay with me through Monday nignt and go on my appointment Monday afternoon to meet the new doctor.</p>

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<p>LTS- So glad D will be arriving today! Enjoy your weekend.</p>

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<p>LTS, I am wondering why the recommendation is to go ahead with second-line treatment now without confirming the presence of disease. Isn’t it usual to wait until the disease comes back before treating again? I gather that the new doctor believes that even if everything seems normal there is microscopic disease that he wants to treat? When you talk about the areas of PET uptake that were painful but are now fine, you are referring to non-lung sites, right? There was some PET uptake in the lung - that may have been infection or may have been cancer - was that in the original disease site?</p>

<p>I remember that even “Dr. Doom” was puzzled by your “performance status” as it was incongruous with his take on the PET scan. Were there substances in your blood before treatment that are now gone, that would be expected to reappear if the cancer had progressed?</p>

<p>I’ve lost track of what the new treatment will be - Topotecan? Is the plan to treat with this alone, or in combination with something else? </p>

<p>Sorry about all the questions, which you should feel free to ignore. I have the kind of mind that can’t stop thinking.</p>

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<p>Excellent news about your daughter arriving. That must really lighten your heart a bit. You can even watch the Superbowl together!! </p>

<p>I also want to say how fortunate it is that you recently had that wonderful career moment
with the 4 star general
it sounded like that might have been a very significant professional accomplishment
 and I think it is very fortuitous that you have already had that success. I know I have had career highs
 and career lows
 and it is all fleeting
 I like to think that is why everyone always says enjoy the NOW. I do know that I am at my worst when I “project” the future
 so, savor the high of that work effort
 and keep it in your quiver for confidence going forward. Those moments are like catching the perfect wave, when body surfing. One of my favorite summer activities
 which I almost never do anymore because the water is too cold and the bathing suits too small
ha ha
 but once upon a time, I could ride waves!!</p>

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<p>glad this week’s decisions are made, and your daughter is in for the weekend! I appreciate that your physician was forthright with you re the merit of the violations. Lots of foreign born physicians with confusing credentials in the NOVA corridor, and although care must be taken re credentials, and one wonders who complained in the first place, and what quality of legal rep your new physician had in his corner in this process (married to a lawyer)
 the physician’s lack of defensiveness in his response and full disclosure with you is a solid marker
and perhaps indication that he is the kind of person who will fully disclose and discuss as his style.
I also like that the violations were very cut and dried and do not think they imply further questionable practices. If anything, they imply to me that a small practice equals more personal care but also more risk of fatigue for the main MDs and therefore he may have been looking for doctors needing medical hours in the US as part of his care delivery team. It is possible that these individuals although not credentialed properly, had a lot to offer patients in oversight and he simply made a mistake in not researching the rules thoroughly enough.</p>

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<p>NYMomof2, the questions are fair, and there isn’t nearly enough brain trust for this in my opinion. </p>

<p>Let’s start with the premise that small cell lung cancer is divided into only two stages: limited, or extensive. There isn’t a numerical staging system for this cancer as with other cancers. The diffierence between limited and extensive is what can be targeted through a single radiation port. </p>

<p>The majority of sclc diagnosises are extensive disease, which is considered to not be curable, and the survival rate is 1% - 6%; even when remission can be achieved, nearly 100% of persons relapse, and the majority of those die. </p>

<p>I have extensive disease; cancer in one lung with mets to the liver. The standard of care is chemotherapy only, and there are only a few options. Topotecan is the second line, and, in cases where the third and subsequent lines are used, typically the response becomes progressively poorer. But even persons lucky enough to be categorized into limited stage typically end up with extensive disease. </p>

<p>The first scans - PET and CT - after two rounds of chemotherapy showed an 85% reduction in the amount of cancer. The second scans - PET and CT again - showed even more regression, and an “excellent response”, according to both my radiation oncologist and primary oncologist in Miami. I asked both of them if they compared both films and they said that they did. </p>

<p>This third scan, PET only, no CT, done after my 6th cycle of chemotherapy, uses the phrase “interval progressive disease”, and says there is increased uptake in the lung, in the remaining 1.1 cm spot on the liver, and in three other areas (except that these three areas are imprecise and do not speak to anything measurable, just “uptake area”). </p>

<p>My Miami oncologist’s response to this was to order an MRI of the new areas. A mammogram might have made more sense but he thought an MRI would be better. I thought this was a ridiculous approach but his “good news
” announcement caused me to terminate our relationship. </p>

<p>The first Virginia doctor who decided I am already dead, based on the PET report and nothing else (no films, medical file, etc.) wanted me to start with Topotecan. He immediately assigned me to the category “refractory disease”, a fatal situation - and it may still be true, I don’t think we know enough one way or the other. I didn’t want to do this, because at the moment, there are four or five trials involving Topotecan and another drug, and there are even more planned trials in the pipeline, and, if I do Topotecan now, those trial options are foreclosed. I tried to convince him to use other combinations of chemotherapies that are commonly used with sclc, but, he wouldn’t even consider listening to me. I flat-out asked him if his treatment plan was in any way curative, and he said no, absolutely not, palliative only. </p>

<p>My new doctor agrees with my strategy of saving Topotecan and playing that card if it’s needed, and instead moving on another chemotherapy combination, and even using radiation, if possible. My Miami oncologist was always promising to do radiation (the standard of care for limited disease and a potentially curative situation) but never quite doing it; I would arrive for the appointment and be told “next time”.</p>

<p>The reason it makes sense to move on to more chemotherapy is because - even if I had a scan showing no evidence of disease, there would almost certainly be micrometastatic disease floating around; stuff that cannot be picked up by a PET or any other technology.</p>

<p>The long term plan is to get rid of all the disease, and then move on to a trial vaccine, a maintenance situation, or some other scenario that might keep this at bay long enough to defeat it. This is where the first Virginia doctor became useless - if he won’t even listen to a well reasoned, carefully researched dialog for a treatment plan, there is no way he is going to consider some of the less-studied and perhaps even experimental issues I am going to need to look at later. These would include some controversial approaches such as thalidomide for adjunctative care etc. I literally took a file five inches thick to my meeting with him - proving other chemos used as a second treatement and showing the Topotecan trials (which are taking place at JHU, MSK and other reputable cancer centers) and even documents from NHI and he would not look at even one single document. </p>

<p>The very few long term survivors of this have all had aggressive treatment. The gentleman in Texas had 30 days of radiation, which is usually only for limited stage disease; his oncologist ignored the rules. Another person I know of had ten cycles of chemotherapy in first line treatment, still another had extensive radiation at the direction of their oncologist. These people are five+ years out and while they still do live between scans, QOL is excellent.</p>

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<p>I forgot to add - there is some question in the new oncologist’s mind that the lung uptake is actually infection. He’s correct in that what I did once released from the hospital is fly to Washington and rent my new offices, then, I began flying back to Miami for treatment only, and of course for the holidays. The difference between the two climates was causing a bit of a problem for me - 80 degrees and humid to cold and on some days even snow. There were a few days I was fighting with a cough, around the time of the PET
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<p>Having said that, I am very leary of accepting just the information I want to hear, and ignoring or disregarding the information I don’t like. A PET with no CT comparison is sort of goofy though in my mind so it’s hard to know what to believe, and what to discard.</p>

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<p>LTS, Thank you for that summary. I knew some of the elements, but not everything. I see now that with this disease, “wait and see and hope for the best” after initial treatment is not a good strategy; you must be aggressive. I’m glad that the new treatment will be not-Topotecan, and will not preclude later participation in promising trials. </p>

<p>That first VA doctor was certainly wrong for you! I have encountered doctors before who were not willing to even listen to reasonable questions or consider other ideas, and I absolutely can’t deal with them. I came to the conclusion years ago that many doctors operate by using algorithms, and do not think at all. </p>

<p>Your plan appears sound to me - and I am honored to be a part of your brain trust!</p>

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<p>LTS,
At the leukemia practice at JHU/Kimmel, there is a set protocol for patients, depending where they are in their disease. Their standard of care is X, as determined by the head of the service, and everyone else falls into line. (I did not know that when I first went there for consults almost six years ago.) Now if they want you for a trial, that may vary. I was a pretty plain-vanilla case. I have a friend, also with CML, who is on a trial there now and finds herself spending great amounts of energy advocating for her needs vs. the needs of the trial. (This is a big reason I haven’t joined it, even though I qualify.)</p>

<p>When I was diagnosed, they did not offer Gleevec as a first-line drug (and this was a year after FDA approval). They wanted an initial period on Inerferon, assess for response and tolerance, and then move to Gleevec if warranted as second-line. This coincided with my preferences – I wanted to give Interferon a shot and see if I was one of the lucky 20% who got a partial response, or one of the even fewer who got a complete response. I was in the latter category, and did 10 miu of IFN every day for two years. (Doctors in the house can testify that is a huge honkin’ dose.) I was willing to tolerate the side effects as long as I had a response. When I started losing my good numbers, I switched to Gleevec.</p>

<p>My current onc was at JHU for about ten years, and from what I have gathered, left in part because of this inflexibility. She was one of the early backers of Gleevec. She has been encouraging me to switch to the newer CML drugs because of severe Gleevec intolerance, but I am one who likes to keep something in my back pocket. I strongly prefer that I not be on the bleeding edge of trials and research unless and until I have no other choice.</p>

<p>I don’t know if other practices at JHU follow the same sort of “party line” in terms of treatment protocols, but it would be something to question thoroughly if you find yourself investigating their trials at some point.</p>

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<p>Countingdown, The first principle of medicine is always “do no harm” rahter than to defy statistics with aggressive treatments that are not based on solid clinical evidence. Not that I think this principle should apply to all cases, but it is generally used for ethical reasons as well as to avoid malpractice litigations. Thus, when Gleevec was first approved for secondline, many physicians would not use it for frontline despite its unparallel efficacy seen in second line settings.</p>

<p>For acute leukemia, the standard treatments for both frontline and relapse settings do work well, and it would be unethical to go outside the guideline unless something spectacular comes along. Fos SCL, treatments in frontline and relapsed settings are less-well defined, for reasons that no single regimen has shown uncontested superiority. While it is true that Topotecan has been the only drug formally approved by the FDA for second line, it is only because of economic reasons that regimens with more established drugs did not formally seek approval. Nonetheless, they are used as much as Topotecan for a variety of reasons. The guideline for SCL relapse includes clinical trials, which pretty much indicates the absence of an accepted standard treatment.</p>

<p>LTS, Hope you will make the right choice. Don’t second guess it though. I think any phsycian who takes you on would know at this stage that you are a formidable self-educated patient. Hopefully, your new doctor will view that as a super positive but yet has the self-confidence to led you know why you may be wrong when a disagreement arises. Best wishes.</p>

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<p>Keep fighting. Maybe others aren’t as aggressive (compliment) as you. Maybe others don’t want to consider doing hard treatment days. Maybe they are older so they have more willingness to give it in. </p>

<p>Maybe it’s the money for the treatments that causes these protocols. </p>

<p>But you are an individual, ready to do differently than others on the table and carry out many more treatments than most would. </p>

<p>So, keep fighting for the outside-the-box plans and protocols, and the doctors who will consider them. MHO.</p>

<p>PS, I’m so moved that despite your feistiness, you want others to pray for you, and so I will, along with others. Whether we say “you’re in our thoughts” or “you’re in our prayers” I think it amounts to the same thing. Have a peaceful evening; we’re all with you.</p>

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<p>Clean brain? Does anyone have a cleaner, clearer brain than yours, lts? I don’t know what the future holds, but your brain is an amazing organ! Glad your daughter is with you.</p>

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<p><a href=“http://www.courierpress.com/news/2006/Sep/15/oncologist-raises-bar-on-cancer-treatment/[/url]”>http://www.courierpress.com/news/2006/Sep/15/oncologist-raises-bar-on-cancer-treatment/&lt;/a&gt;&lt;/p&gt;

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<p>I am on Covenant House’s emailing list for daily, brief quotes. Yesterday’s (I’m a little behind) brought LTS to mind instantly:</p>

<p>The person who says it cannot be done should not interrupt the person doing it.</p>

<p>:)</p>

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<p>ADad, you’re right about that. I don’t usually post on this thread, but read it every time I’m on. LTS, It’s amazing how you’ve opened yourself up to us here on CC, and you’ve got LOTS of people being reminded of you every day, and sending good thoughts your way.</p>