The Stupid Cancer Forums http://forums.stupidcancer.com/ A place to discuss all things Stupid Cancer! en Thu, 17 May 2012 11:44:35 GMT vBulletin 60 http://forums.stupidcancer.com/images/misc/rss.png The Stupid Cancer Forums http://forums.stupidcancer.com/ Cook Books http://forums.stupidcancer.com/showthread.php?1512-Cook-Books&goto=newpost Wed, 16 May 2012 05:15:53 GMT Any great nutrition, cooking, healthy books for young adults? Some books can be VERY boring and old fashioned. Anyone have ideas on young adult cook... Any great nutrition, cooking, healthy books for young adults?
Some books can be VERY boring and old fashioned. Anyone have ideas on young adult cook books. Preferably Vegetarian, Vegan, or cancer fighting foods stylee.
Heard great things about:
- Crazy Sexy Diet by Kris Carr
- Betty Crocker Living with Cancer Cookbook

Haven't read them personally yet so any feedback? Other ideas? Thanks! ]]> General Discussion thekimmyest http://forums.stupidcancer.com/showthread.php?1512-Cook-Books Local BC Resource Centers http://forums.stupidcancer.com/showthread.php?1511-Local-BC-Resource-Centers&goto=newpost Tue, 15 May 2012 02:11:51 GMT I get A LOT of free wigs and knitted hats but would LOVE more info on the following: - INSURANCE info. BCCTP vs Medi-Cal vs HMO - Weekly, YOUNG... I get A LOT of free wigs and knitted hats but would LOVE more info on the following:
- INSURANCE info. BCCTP vs Medi-Cal vs HMO
- Weekly, YOUNG women’s support groups. 20-somethings! Not just once a month!
- Exercise programs (can we get a gym membership DISCOUNT already. i mean, c’mon!)
- Nutrition (found out today medi-cal doesn’t cover a dietitian. is this a joke?)
- FUN events. cancer patients like to have fun too. not just bike & walk all the time.

A popular cancer resource center on facebook hasn’t responded to my e-mail in 1 week and counting. These centers need to dump the old ladies, hire people who LOVE their job, and get with technology already. GEEZ. ]]> I Just Need To Vent thekimmyest http://forums.stupidcancer.com/showthread.php?1511-Local-BC-Resource-Centers What to do... http://forums.stupidcancer.com/showthread.php?1510-What-to-do...&goto=newpost Mon, 14 May 2012 19:33:11 GMT So I finally got the report from the second opinion I had done on my pathology..and may be more confused than before. Especially since both hospitals... So I finally got the report from the second opinion I had done on my pathology..and may be more confused than before. Especially since both hospitals are great institutions, well known for their neuro-onc departments

My pathology was originally done at Johns Hopkins. They diagnosed a difficult to classify "Unusual Grade 2/3 Astrocytoma" that was "insufficient for a higher grade designation". There were some features "reminiscent of but not diagnostic" of a pleomorphic xanthoastrocytoma. My neurosurgeon, neuro-oncologist & radiation oncologist all agreed with a watch and wait approach to treatment (after complete resection). My most recent MRI showed some new enhancement believed to be scar tissue.

Today I received a pathology report done at Dana-Farber in Boston. They diagnosed a Pleomorphic Xanthoastrocytoma with Anaplastic Features (differential diagnosis for them was GBM or a non-categorical High Grade Glioma). On the report it says my case was reviewed at their neuropathology review conference and the opinion was that the tumor was a PXA w/ anaplastic features, with the GBM diagnosis NOT being favored.

I am planning on sending my patho to one more place (memorial-sloan) but was wondering if anyone had any experience with this tumor. I have not done a ton of research yet but it seems that there is little treatment info available on PXA's with anaplastic features because it is so rare, from what I've read so far it does seem to be highly recurrent but it is unknown if temodar is effective against it.

Also as far as discussing this with my docs at hopkins do I have to make more appointments with them? I have a follow up with my surgeon in July but currently do not have any plans to see the oncologists again. Does anyone know if when a pathologist receives a report from an outside institution that is different from what they diagnosed, do they contact the patients doctors? So many questions on how to go about this, do I make an appointment with my docs at JHH, or try to see new docs at Dana Farber (which would require quite a bit of travel but I am from Boston so it's a trip I make frequently enough).

Would love any insight/opinions. Thanks! ]]> General Discussion eakelly87 http://forums.stupidcancer.com/showthread.php?1510-What-to-do... Different Second Opinions... http://forums.stupidcancer.com/showthread.php?1509-Different-Second-Opinions...&goto=newpost Mon, 14 May 2012 19:31:55 GMT So I finally got the report from the second opinion I had done on my pathology..and may be more confused than before. Especially since both hospitals... So I finally got the report from the second opinion I had done on my pathology..and may be more confused than before. Especially since both hospitals are great institutions, well known for their neuro-onc departments

My pathology was originally done at Johns Hopkins. They diagnosed a difficult to classify "Unusual Grade 2/3 Astrocytoma" that was "insufficient for a higher grade designation". There were some features "reminiscent of but not diagnostic" of a pleomorphic xanthoastrocytoma. My neurosurgeon, neuro-oncologist & radiation oncologist all agreed with a watch and wait approach to treatment (after complete resection). My most recent MRI showed some new enhancement believed to be scar tissue.

Today I received a pathology report done at Dana-Farber in Boston. They diagnosed a Pleomorphic Xanthoastrocytoma with Anaplastic Features (differential diagnosis for them was GBM or a non-categorical High Grade Glioma). On the report it says my case was reviewed at their neuropathology review conference and the opinion was that the tumor was a PXA w/ anaplastic features, with the GBM diagnosis NOT being favored.

I am planning on sending my patho to one more place (memorial-sloan) but was wondering if anyone had any experience with this tumor. I have not done a ton of research yet but it seems that there is little treatment info available on PXA's with anaplastic features because it is so rare, from what I've read so far it does seem to be highly recurrent but it is unknown if temodar is effective against it.

Also as far as discussing this with my docs at hopkins do I have to make more appointments with them? I have a follow up with my surgeon in July but currently do not have any plans to see the oncologists again. Does anyone know if when a pathologist receives a report from an outside institution that is different from what they diagnosed, do they contact the patients doctors? So many questions on how to go about this, do I make an appointment with my docs at JHH, or try to see new docs at Dana Farber (which would require quite a bit of travel but I am from Boston so it's a trip I make frequently enough).

Would love any insight/opinions. Thanks! ]]> Brain Cancer eakelly87 http://forums.stupidcancer.com/showthread.php?1509-Different-Second-Opinions... New Here from Los Angeles http://forums.stupidcancer.com/showthread.php?1508-New-Here-from-Los-Angeles&goto=newpost Fri, 11 May 2012 05:16:46 GMT Hello, My name is Paul and I have recently been diagnosed with Pleomorphic Undifferentiated Sarcoma. While I wish none of us were going through our... Hello, My name is Paul and I have recently been diagnosed with Pleomorphic Undifferentiated Sarcoma. While I wish none of us were going through our battles with cancer, it's nice to find a site with people sharing like experiences. I've been emboldened by what I have read. ]]> Introductions PCMiller http://forums.stupidcancer.com/showthread.php?1508-New-Here-from-Los-Angeles New on the Sarcoma Board http://forums.stupidcancer.com/showthread.php?1507-New-on-the-Sarcoma-Board&goto=newpost Fri, 11 May 2012 03:55:03 GMT Hello Everyone,

My name is Paul and I was recently diagnosed with Pleomorphic Undifferentiated Sarcoma. I'm on the older side of the group (48) but to be honest, cancer sucks no matter what the age! My tumor (the size of a flattened golfball) was removed from my side with a couple of narrow margins so I'm beginning 2 months of radiation treatments on Monday. Perhaps more daunting, I will be finding out my recommended "cancer diet" tomorrow. I am determined to eat whatever I'm told to thwart this stuff.

I've been reading posts and have to say that I've been encouraged by the bravery, courage, and honesty displayed by everyone, even in the darkest times. Thank you for sharing your thoughts and words.

Paul ]]> Sarcomas PCMiller http://forums.stupidcancer.com/showthread.php?1507-New-on-the-Sarcoma-Board Gah, why are you giving me such trouble body? XD http://forums.stupidcancer.com/showthread.php?1506-Gah-why-are-you-giving-me-such-trouble-body-XD&goto=newpost Wed, 09 May 2012 15:13:24 GMT So recently I've been having trouble walking (left leg) and well, I had an MRI and found out that because of the steroids I'm on, somehow they messed with the oxygen levels in my hip (or hips, I haven't asked yet, my parents got a phone call)... so I'm going to need at least one new hip.

So I'm nervous about going under. I've done that before when my lung collapsed, but yeah, I'm still nervous. I also don't know when I'll be going to get the new hip and I think my trip to England has been cancelled (if I get the surgery done soon then no trip). I was looking forward to that trip too. Why must anti-cancer drugs drive my body crazy? XD

Thanks for listening :) ]]> I Just Need To Vent Crazycatlady360 http://forums.stupidcancer.com/showthread.php?1506-Gah-why-are-you-giving-me-such-trouble-body-XD Thyroid Cancer in the news http://forums.stupidcancer.com/showthread.php?1505-Thyroid-Cancer-in-the-news&goto=newpost Wed, 09 May 2012 13:59:37 GMT http://health.msn.com/health-topics/cancer/lower-dose-radioiodine-effective-against-thyroid-cancer *Lower-Dose Radioiodine Effective Against... http://health.msn.com/health-topics/...thyroid-cancer

Lower-Dose Radioiodine Effective Against Thyroid Cancer
Patients may be able to skip high doses of radiation, painful thyroid hormone withdrawal, studies find
By Carina Storrs
HealthDay Reporter

WEDNESDAY, May 2 (HealthDay News) -- People with thyroid cancer are often given a radioactive iodine treatment to wipe out stray cancer cells, a treatment that comes with its own health risks.

Now, two new studies find that a safer, lower dose of radioactive iodine is just as effective as the higher dose at getting rid of any such cells that remain after surgery.

The research also found that patients were just as likely to have their thyroid shrunk away if they took a drug called Thyrogen (thyrotropin) as if they underwent thyroid hormone withdrawal -- which leads to fatigue, pain and weight gain -- before embarking on the radioiodine treatment.

The two studies, published in the May 3 issue of the New England Journal of Medicine, compared low- and high-dose radioactive iodine in a total of more than 1,000 patients. The participants, from Britain and France, also received either Thyrogen or thyroid hormone withdrawal as part of the therapy.

In either study, the researchers found that patients who received the low-dose (30 millicuries) of radioactive iodine in combination with Thyrogen were just as apt to have their remaining thyroid cells mopped up -- with fewer side effects -- than patients who received higher-dose (100 millicuries ) radioiodine along with either Thyrogen or hormone withdrawal.

However, the researchers say they plan on monitoring the patients for several years to see if rates of cancer recurrence are similar in the different groups.

"We try to give the lowest possible effective radiation dose so that we cure the current cancer, but we do not increase the risk of producing a second cancer resulting from the radiation itself," explained Dr. Ujjal Mallick, an oncologist at the Northern Centre for Cancer Care in Newcastle upon Tyne, in England, and lead author of the UK study.

Radioactive iodine has been associated with increased risk of a number of cancers, particularly leukemia, as well as short-term side effects such as nausea.

"Our study shows that clinicians can consider low-dose radioactive iodine in selected patients that have up to a four-centimeter tumor in the thyroid gland that has not spread outside the neck and have been operated on by expert surgeons," Mallick said.

The number of people diagnosed with thyroid cancer has been on the rise in the past decade, and there will be more than 56,000 new cases in the United States in 2012, according to the American Cancer Society's estimate. The disease, which is highly curable if caught early, affects more women than men, with patients tending to be diagnosed in their 40s and 50s.

The new studies suggest that, "we can spare a lot of young patients by using low-dose radioactive iodine," Mallick said.

However, Dr. David Cooper, an endocrinologist at Johns Hopkins School of Medicine in Baltimore, said that patients under 45 probably can probably avoid radioactive iodine altogether if their tumors are small (less than 2 centimeters) and the cancer has not spread to other parts of their body. Cooper was not involved in the new studies.

In fact, some of the low-risk patients in the current studies might not have needed radioactive iodine treatment at all, Cooper said.

"The chance that a person with low-risk thyroid cancer is going to come back in a year or two with recurrence is no different whether they got radioactive iodine or not," Cooper said.

In low-risk cases, the whole point of radiation treatment is more about getting rid of the normal tissue, which makes monitoring patients for recurrence easier, and less about wiping out disease, which surgery usually takes care of, Cooper said. However tests are usually sensitive enough to pick out recurrence even in patients who do not receive radiation to help eliminate their thyroid.

The research, led by Mallick and his colleagues, involved 421 patients at 29 centers in the U.K. who had thyroid cancer that had not spread outside the neck. The other study looked at 684 patients in France who had small thyroid tumors that had not metastasized (spread) beyond the neck.

All of the patients had undergone surgery to remove the bulk of their thyroid gland and were receiving thyroid hormone therapy to replace the natural thyroid hormone.

In both studies, researchers found that the rates of effective thyroid reduction in the months after treatment were similar in both the low- and high-dose groups.

Mallick and his colleagues found that about 84 percent of patients who received low-dose radioactive iodine along with Thyrogen had undetectable levels of thyroid tissue six to nine months later, compared with about 90 percent in the high-dose-plus-Thyrogen group and about 88 percent in the high-dose-plus-hormone-withdrawal group.

In addition, the rates of common side effects of radiation such as neck pain and nausea were higher in the high-dose group than in the low-dose group.

"These studies are not all that earth shattering" because smaller studies have shown that low-dose therapy is effective, Cooper said. "However these studies add something because they involve hundreds of people that were monitored carefully."

Many doctors in the United States are already using Thyrogen for thyroid ablation because patients feel awful during the weeks of thyroid hormone withdrawal leading up to radioactive iodine therapy, Cooper said.

However, a major problem with radioactive iodine treatment in the United States is that doctors use it in patients outside of the 2009 American Thyroid Association recommendations, which state that radioiodine should be used for certain people with tumors larger than 1 centimeter that have other properties, such as invasiveness, Cooper said. (Cooper was the lead author of these recommendations).

The current studies could help doctors at least see that a large dose of radioactive iodine is not necessary, Cooper said.

For his part, Mallick said, "In our hospital, we are going to start to implement the low-dose radioactive iodine for patients who match the criteria in the study."

He and his collaborators are about to start a new trial comparing low-dose with no radioiodine to see if radiation is necessary in selected low-risk patients after surgery. "This will answer a question that has plagued clinicians for several decades," he said.

More information

To learn more about radioactive iodine, visit the American Cancer Society.

SOURCES: Ujjal Mallick, F.R.C.R., master of surgery, clinical oncologist, Freeman Hospital, Northern Centre for Cancer Care in Newcastle upon Tyne, England; David Cooper, M.D., professor, medicine and radiology, Johns Hopkins School of Medicine, Baltimore; May 3, 2012, New England Journal of Medicine ]]> Thyroid Cancer jadefu http://forums.stupidcancer.com/showthread.php?1505-Thyroid-Cancer-in-the-news Movies that define us http://forums.stupidcancer.com/showthread.php?1504-Movies-that-define-us&goto=newpost Wed, 09 May 2012 11:52:55 GMT The other day I was reminded how much the movie Philadelphia (starring Tom Hanks and Denzel Washington) has spoken FOR me. Although I have never... The other day I was reminded how much the movie Philadelphia (starring Tom Hanks and Denzel Washington) has spoken FOR me. Although I have never been diagnosed as HIV+, the experience Andy (Tom Hanks) has with the medical community resonates with the story of my own life.

You will find on this journey of life that there are those in this world who 'see' you in just one glance. They barely need to know the of details of your life--they just see you. They recognize it in the way you treat others, look out for community and if their own life story has any overlap with yours--they will simply know it by looking at you.

As a long-term survivor of a pediatric bria tumor (dx at 4.5 years) I have become quite familiar with hospitals, nurses and EMTs. These selfless individuals work each and every day--desperately trying to save humanity--one human being at a time. It's an uphill battle filled with medical school shortcomings (functional medicine), insurance industry power grabs, pharmaceutical industry coercion and the ivory tower/silo'd research phenomenon.

Despite this our Nation now appears ready to take the helm of this massive ship. Its never too late to course-correct but it requires the cooperation of an entire army of hearts and minds. In doing so we must respect rank and have faith in the process. A whole new generation of informed political advocacy is about to begin.

Welcome aboard. ]]> Spirituality and Personal Growth James Manning http://forums.stupidcancer.com/showthread.php?1504-Movies-that-define-us Self reflection http://forums.stupidcancer.com/showthread.php?1503-Self-reflection&goto=newpost Wed, 09 May 2012 00:40:15 GMT
Excerpt from
The Book of Awakening
by Mark Nepo
page 42

A Set of Inner Doors

The stuff of our lives dosen’t change.
It is we who change in relation to it.

- Molly Vass


Whatever our gifts or wounds or life situation—whether we have been married several times or have never been in love, whether we have plenty of money or are sorely in need of more—the core issues of our lives will not go away.

There exists for each life on Earth a set of inner doors that no one can go through for us. We can change jobs or lovers, travel around the world, become a doctor or a lawyer or expert mountain climber, or nobly put our life on hold to care for an ailing mother or father, and when we are done, through the worthy distraction could take years, the last threshold we didn’t cross within will be there waiting. There is no substitute for genuine risk.

Stranger still is how the very core issues we avoid return, sometimes with different faces, but still, we are brought full circle to them, again and again. Regardless of how we may try to skip over or sidestep what we need to face, we humbly discover that no other threshold is possible until we use our courage to open the door before us. Perhaps the oldest working truth of self-discovery is that the only way out is through. That we are returned repeatedly to the same circumstance is not always a sign of avoidance, but can mean our work around a certain issue is not done.

In my own life, it is not by chance that struggling to adulthood with a domineering and critical mother, I have been thrust again and again into situations with dominant men and women, struggling painfully for their approval and fearing their rejection. For years, I tried to manage the circumstance better, which was like sanding and varnishing the door without ever opening it. I was destined to repeat the pain of rejection, no matter how skillfully I handled it, until I opened the door of self-worth.

Even my calling to be a poet became a distraction that lasted many years. Feeling rejected and insecure at heart, I quickly made a mission of becoming a famous writer, only to find myself one day replaying the issues of approval and rejection a hundredfold at the mailbox, as I awaited word from countless critical strangers known as editors. I was stunned and relieved to finally discover myself at the same threshold of loving myself that I had run from years before.

The thresholds go nowhere. It is we who, in our readiness and experience, keep coming back, because the soul knows only one way to fulfill itself, and that is to take in what is true.
  • Meditate on an issue that keeps returning to you.
  • Relate to it as a messenger and ask the messenger what door is trying to open for you.
  • How will your life change if you move through this threshold?
  • How will your life be affected if you do not?



SOURCE:
The Book of Awakening: having the life you want
by being present to the life you have
ISBN: 1-57324-117-2
IndieBound: http://www.indiebound.org/book/9781573241175
New York Public Library: http://nypl.bibliocommons.com/item/s...k_of_awakening ]]> Spirituality and Personal Growth James Manning http://forums.stupidcancer.com/showthread.php?1503-Self-reflection this is awesome http://forums.stupidcancer.com/showthread.php?1501-this-is-awesome&goto=newpost Tue, 08 May 2012 20:47:41 GMT http://youtu.be/ihGCj5mfCk8 http://youtu.be/ihGCj5mfCk8 ]]> General Discussion mermer4 http://forums.stupidcancer.com/showthread.php?1501-this-is-awesome Second line http://forums.stupidcancer.com/showthread.php?1499-Second-line&goto=newpost Tue, 08 May 2012 00:50:15 GMT Hi out there. My husband was diagnosed in January and just started second line chemo after the first line failed. The doctors have high hopes second... Hi out there. My husband was diagnosed in January and just started second line chemo after the first line failed. The doctors have high hopes second line will work. It's been very rough so far. We just got married in December and was then hit with this. Stage 4 nsclc. It sucks to say the least. We haven't even had a honeymoon yet. He's lost 50 pounds and chemo has exausted him. We are only 43. I forgot to mention that. Although I know the statistics and grim outcome of most with lung cancer. I choose to be positive. Miracles happen, we have faith and there are plenty out there that have beat the odds. I'm new to this sight. I'm glad I found it. The fight against stupid cancer continues. God bless you all. ]]> Lung Cancer Micks wife http://forums.stupidcancer.com/showthread.php?1499-Second-line Raw Milk and Digestion http://forums.stupidcancer.com/showthread.php?1498-Raw-Milk-and-Digestion&goto=newpost Mon, 07 May 2012 23:43:25 GMT For anyone who has found difficulty digesting commercially sold milk (from the grocery) which is both pasteurized and homogenized I would strongly... For anyone who has found difficulty digesting commercially sold milk (from the grocery) which is both pasteurized and homogenized I would strongly suggest you check out this video from Harvard University featuring Weston A Price Foundation executive director Sally Fallon Morell. Give the debate a chance, you will find it quite informative.





]]> James Manning http://forums.stupidcancer.com/showthread.php?1498-Raw-Milk-and-Digestion Medulloblastoma http://forums.stupidcancer.com/showthread.php?1497-Medulloblastoma&goto=newpost Mon, 07 May 2012 00:40:29 GMT I am just wonder if there are any Medulloblastoma patients/survivors on here. I am just wonder if there are any Medulloblastoma patients/survivors on here. ]]> Brain Cancer Survived http://forums.stupidcancer.com/showthread.php?1497-Medulloblastoma Done with chemo! http://forums.stupidcancer.com/showthread.php?1496-Done-with-chemo!&goto=newpost Sun, 06 May 2012 03:55:52 GMT Well it's been 12 days since my VERY LAST CHEMO!!! Got through six rounds of R+chop! Now I wait for my Pet scan on the 14th and we go from there. Thought I should check in with everyone seen I was away for a little bit. Neausea still comes and goes and I am so very tired, but it's been normal over here. Counts went down as predicated and I hope they are back on the rise :) ]]> luv4potter http://forums.stupidcancer.com/showthread.php?1496-Done-with-chemo!