Support for LateToSchool

[mythmom]

<p>OMG, LTS. Another horror story. Thank goodness you are so insightful and quick at representing yourself.</p>

<p>Your primary doctor sounds wonderful so yea for him, and I am so relieved he is pleased with your progress.</p>

<p>Good to know you are not being rushed.</p>

<p>All my prayers and love.</p>

[aibarr]

<p>You’re more than welcome for the spandrel beams. If you want, I can have my guys pull some extra rebars for you so you can club people over the heads with them when they come near you with unauthorized treatments…!!! </p>

<p>(HOLY SMOKES!! I’m really glad you have a great and trustworthy oncologist, and that you have the wisdom and tenacity to seek out his opinion…!!)</p>

[NYMomof2]

<p>Yet another unbelievable experience! LTS, this is a real saga!</p>

<p>I, also, want front-row tickets for LTS’ congressional testimony. Let’s plan a cheering section!</p>

<p>Love the spandrel beams! What a lovely idea, aibarr! </p>

<p>esobay, How thoughtful of you to think of taking LTS’ headache - perhaps, although she had a metaphorical headache today, she was spared the real one?</p>

[churchmusicmom]

<p>I think we should definitely plan to be there in the gallery for the testimony. I know I want to…</p>

<p>Prayers, prayers. Still going up and out!</p>

[Karen_Colleges]

<p>OMG, it sounds like our natural fear of doctors and hospitals is well-deserved.</p>

<p>Your journey makes me thrilled that I only had breast cancer. The treatment was very straight forward. My heart aches when I read what you have been going through. </p>

<p>I hope you are having a good day.</p>

[4Giggles]

<p>LTS- OMG!! If we were not reading this we couldn’t even imagine! But what stands out the most is your unwavering strength and clarity in the most unbelievable situations. </p>

<p>Have a good trip to NY tomorrow.</p>

[CountingDown]

<p>LTS and DC-area CCers,
So when shall we walk among the cherry blossoms??</p>

[SBmom]

<p>I am just SO happy you found the right oncologist. It sounds like this doctor is right on your same page, all the time.</p>

[sax]

<p>oh my LTS, your post reads like a bad horror movie script. I realized I was holding my breath until you wrote that they let you up!</p>

<p>Battle On!</p>

[keymom]

<p>That is truly ridiculous practice. When we do a simple labor epidural we have to do a timeout and a permit. The timeoout states we have the right procedure, patient, permit, allergies, medical conditions. All in front of the patient with all the players there. It is done for every procedure that I can think of. Can’t believe for something as big as wbr, they wouldn’t do it.
Outrageous.
Prayers continue.</p>

[mstee]

<p>Amazing story. Unbelievable. You are teaching these people so much about respecting a patient. You are awesome.</p>

[NYMomof2]

<p>That’s just it, mstee. Somehow the medical profession does not see patients as partners in their own care. Most patients do not obtain their test results, read the reports, question their doctors, and expect to participate in decisions. And this behavior is not encouraged. Patients are kept in a subordinate position. The typical introduction - I’m sure you’ve all heard it - is telling:</p>

<p>“Hello, Suzie. I’m Dr. Jones.”</p>

[mommusic]

<p>NYMom–some doctors don’t even see other health care professionals as partners. I heard one doc scoff at the dietitian my diabetic H has been seeing, who is helping him lose weight. Well, the doctor hadn’t been any help–he even made light of diets, saying “people don’t follow them.” :eek:</p>

<p>And the nice dietitian made excuses for the doc–“He means well, he’s just too busy to read up on diabetes…”</p>

<p>So it behooves all of us to be our own best advocates. You go, latetoschool!</p>

[Muffy333]

<p>the image of you screaming behind a mask is really powerful. Sounds like a metaphor for my relative’s experience at a world-famous cancer hospital - “we’re going to do this do that do this do that…do you understand? You aren’t allowed to not understand, just sign anyway…You want to READ the form? DISCUSS the treatment? We’ll all just go away and leave you helpless if you’re going to be difficult like that…” </p>

<p>I know doctors who are compassionate and caring. But too many patients are already exhausted from fighting their illness; it is terrible that they have to fight the health system as well.</p>

<p>Best wishes to you!</p>

[epistrophy]

<p>another lung cancer “survivor”</p>

<p>

Kate has never smoked, doesn’t drink, is a longtime vegetarian, and, a mother of two. A former registered nurse, she understands the importance of regular health screenings and has them religiously.</p>

<p>When Kate, then 44 years old, was diagnosed with lung cancer that had metastasized (spread) to her brain, she was stunned. “I’d been having severe headaches and suspected something was wrong, but when I found out I had advanced lung cancer, I was in total shock.”</p>

<p>Kate’s prognosis was not good. In fact, the average length of time most patients with lung cancer as advanced as hers survive is about eight months.</p>

<p>Her brain tumor was surgically removed and she began chemotherapy at a hospital in Connecticut, where she then lived. Investigating all her options, she decided to visit the Massachusetts General Hospital (MGH) Cancer Center to meet with Thomas Lynch, MD, director of the Center for Thoracic Cancers and chief of the Division of Hematology and Oncology.</p>

<p>“After meeting with Dr. Lynch and Dr. Noah Choi, [her radiation oncologist], I decided to receive my care at the MGH Cancer Center,” said Kate, who eventually relocated with her family to a Boston suburb to be closer to MGH. “I was extremely impressed by the Cancer Center’s facility and staff, as well as its many support services.”</p>

<p>The next six months of her life tested her mettle: While trying to maintain some semblance of normalcy for her family, she underwent a host of often-difficult treatments, including more chemotherapy, radiation therapy, and another major operation [performed by MGH thoracic surgeon John Wain, MD] to remove her lung tumor—all the while praying for some good news.</p>

<p>Unfortunately, that was not to be. By early fall of 2002, four large tumors were detected in her liver and the cancer had metastasized to her pancreas. Nothing was working. “The news was devastating,” Kate admits.</p>

<p>Lynch suggested that she consider participating in a clinical research trial under way at MGH and other U.S. hospitals of a drug called Iressa. This is one of a growing number of “smart” cancer drugs aimed at specific molecular targets known to play a pivotal role in cancer. Iressa was being evaluated in patients, like herself, with advanced non-small cell lung cancer (NSCLC, the most common form of the disease) for whom conventional chemotherapy had not been effective.</p>

<p>The active ingredient in Iressa, gefitinib, works by disabling a receptor on the surface of lung cancer cells called epidermal growth factor receptor (EGFR). It essentially halts a sequence of signals that can lead to the wildly uncontrolled proliferation that characterizes malignant tumor cells.</p>

<p>With limited options, but with “a lot of fight left in me,” Kate began taking a daily Iressa pill in late fall of 2002, roughly nine months after her diagnosis. “I wasn’t expecting miracles from Iressa. I just wanted a little more time with my family,” she says.</p>

<p>At eight-week checkup, not much had changed, but then again, nothing had gotten worse. By four months, there was no evidence of tumor in her pancreas. By six months, she was once again in shock, but this time because the news was so unexpectedly good. “There was a dramatic change,” she says. “Multiple tumors had disappeared entirely and larger ones were measurably smaller.” Moreover, no new metastases were evident. Though Kate hadn’t been expecting a miracle, she felt she had gotten one.</p>

<p>Today, she continues to take Iressa and, by her own and Lynch’s account, is “doing great”—basically being an active, involved, stay-at-home wife and mom to her children, who are now 12 and 14. “I feel very energetic and totally back to normal,” she reports. Her most recent checkup showed no discernible signs of cancer.</p>

<p>Since there is no way to know if or when her cancer might recur, neither she nor Lynch uses the word “cure.” But she doesn’t seem to mind.

</p>

<p>[Massachusetts</a> General Hospital : Stories of Strength : Kate](<a href=“http://www.massgeneral.org/cancer/singleplace/stories/kate.html]Massachusetts”>error)</p>

[jym626]

<p><a href=“http://abcnews.go.com/US/wireStory?id=4514943[/url]”>http://abcnews.go.com/US/wireStory?id=4514943&lt;/a&gt;
A patient with a large abdominal tumor was told her cancer was inoperable. She persisted, finding a physician in Miami who performed groundbreaking surgery, temporarily removing several of her major organs to access and remove the tumor. She is reportedly cancer-free and, according to the news report, has been discharged from the hospital.

Dr. Tomoaki Kato had to remove a lot more than a cancerous tumor during an unprecedented operation on a 63-year-old Florida woman earlier this month.</p>

<p>To get to the tumor, which was buried deep in Brooke Zepp’s abdomen and threatened to kill her within months, the organ transplant specialist said he first had to remove her stomach, pancreas, spleen, liver and small and large intestines.</p>

<p>The organs were chilled and preserved outside Zepp’s body during a painstaking 15-hour operation at the University of Miami/Jackson Memorial Medical Center.

</p>

[overseas]

<p>“Overseas, I am glad that you came through your radiation o.k. I am curious to know what you have done with your diet.” </p>

<p>I went to a dietician. She is NYC trained, young, full of life and well, I saw her every week for awhile. I decided that I needed to be on the slim side to fight the beast. But what I discovered, if we eat right the weight rolls off so to speak and now I spend most of my time in the fruit and veggie section. I try and make all my own food, like bread. I have a thyroid problem and she taught me how to combine foods, how to stay away from foods that play negatively with my thyroid pill as well. I stay away from anything fast. I still go and see her, but now once every 6 months.</p>

<p>"There is so much information out there and much of it conflictive, so, for the past several months I have just been eating whatever I want, trusting that my body wants to win this fight so it will demand what it needs; I just have to listen and respond. This has resulted in some very strange meals though. For example, it’s not unusual for me to eat something like 20 tomatoes in two or three days. Five or six bananas a day has been rather normal for the past month. Orange juice and apples I crave almost obsessively. Also, cottage cheese and olives, and insane amounts of ice cream. I have tried to read the labels and ingredients or vitamin content of the foods I have been craving in order to try to understand why I want them so badly, and, none of it makes any sense to me. "</p>

<p>Sounds like you are getting lots of good food. I do agree that we crave things we need, if we are sensitive to those things.</p>

<p>“I know that there are diets proven to reduce the risk of cancer or recurrance, I just cannot seem to get the information all together in one place, and, a lot of the foods I have tried (broccoli or even just the sprouts, yuck) are simply disgusting, or at least intolerable to eat on a regular basis.”</p>

<p>I think the big things to watch are weight, exercise and booze! At least with breast cancer, studies have linked alcohol with recurrance if it is more than 14 units a week. So I am very careful with how many Merlots I drink and at the start, I gave it all up. I go for weeks without any alcohol. But I haven’t given up anything. I think that is stupid as well. We need a little fun!</p>

<p>I have added walking to my life. Walk to the bank, the store, park far away from where I need to go to get those steps in. I don’t go to a gym. I have never been that type of exerciser and always it is not cost effective for me. I would rather spend the money on advice from a dietician. That has been very helpful to me.</p>

<p>I have to watch my sprouts and brocolli! And I love them but they conflict with my thyroid stuff. I stopped combining yogurt and lentils. Ouch, I loved that as well.</p>

<p>Finally, your situation and needs are different from the next person. I do have a very best friend who is two years out from lung surgery and chemo. She is doing fantastic but she now has curly hair. It used to be straight. We both met up in the SF bay area last summer to take stock of what we have, our friendships, family…the important things! What we have learned as well. It isn’t all bad, just seems that way sometimes. All my best.</p>

[overseas]

<p>Jym626, my dad died because he had that form of cancer just under 2 years ago. They couldn’t operate. He wasn’t willing to try anything, was 95 and pulled in all his friends and got the hell out. That was the type of fellow he was, but I saw that article and thought about all the folks now whose life will be saved. Bless the researchers and the doctors.</p>

[keymom]

<p>Diet: My dietician emphasized building my immune system to help fight the cancer. She recommended flaxseed (for breast cancer not flaxseed oil because it doesnt contain lignans which are important to prevention and recurrence), selenium (eat two brazil nuts a day and you are good) and carotene (found in abundance in highly colored fruits and vegetables.)
I too have been craving certain things during my chemo tomatoes being one of them. I can eat a whole carton of those grape sized tomatoes. I crave mangos and vanilla yogurt.
If you are able a good dietician who specializes in cancer might be a big help even in a one time consultation.
Prayers</p>

[overseas]

<p>I take flaxseed, that I grind up, if I can remember…daily! Oh yes, and raw nuts are a constant snack.</p>