February 02, 2019
This web page is messed up, sorry if there are multiple posts but it is not accepting comments in the normal way.
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February 02, 2019
Same situation with prostate cancer. No conversation about lymphedema. Yet very common to do an "extended lymph node removal" for more aggressive biopsies which can trigger significant lymphedema, which generally gets the response "you have to live with it". However, if your lymphedema really bothers you, check what they are doing at MD Anderson (maybe other places too) with lymph node transplant surgeries. Probably some risks involved and may not pan out always, but at least a possible way to mediate it a little.
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August 08, 2018
(Something wrong with website, I had to create empty post, then reply to it)
A very heartfelt article, very touching and brought back memories. So many challenges going through the "journey" of a loved one's cancer, so so hard to accept with hindsight often stimulating a desire to go back and do or try something better or different. The heartache of helplessness, the sadness of those little palliative medicines from the drug store that were all we could do, wishing we could shake the doctors into turning over every stone, search every corner of every research lab for something that might change the outcome, wishing we could light a fire under the medical research funding to put money where it matters, not into superficial
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July 21, 2018
I agree to a large extent with your sentiments.
For someone in remission or under treatment, I wonder if a useful attitude is that cancer can be thought of as a form of aging, perhaps "accelerated aging". In other words, we are all going to die, but having cancer you feel you may be closer to the end, but that does not make you somehow different from others. Or you may not be closer to the end we don't really know, especially in this age of breakthroughs. But you are aware of risk factors whereas people with no diagnosis can cultivate an illusion of immortality. Maybe we mourn that loss of the illusion and I know it can interfere with day-to-day contentment -
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March 22, 2018
I am a widower and my wife was my best friend and I chose to make her my whole world. Grieving is loving as far as I'm concerned. People don't have to read your blog if it bothers them, and it seems to be good for you. I wouldn't go out and get in random peoples, faces with my grief, who knows what they are going through themselves and I don't feel they have a duty to me, although I could make a case that we should all "insure" each other against bad luck by putting out at least a little for those less fortunate than ourselves. Most people want to help someone visibly disabled, but grief can go unnoticed.
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March 22, 2018
Boy, I hear you. My wife, a cancer patient, had the same experience over and over, technicians think they can do it (or want to practice, who knows) and make a mess which can really impact a patient. They have no idea how many more sticks the patient may need over the next few days. I always fought to get the best "sticker" in there early to avoid the flailers. Some workers are just better at it. For chemo patients, or people with disappearing veins, they should be brought in from the get-go to spare the patient yet more hardship in what is already the roughest of journeys. The wear and tear of cancer is underestimated. A patient's
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February 24, 2018
Sorry, I posted twice because of strange formatting in the first submission. I thought I could delete the first one, but can't find a way.
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February 24, 2018
I have debated this very concept with myself, and I have felt two sides. When I have seen the trillions spent to prevent a few terrorist attacks it makes me wonder how many lives those trillions could have been saved if spent on cancer research. When I watched all the sympathy pour out for the victims of the Boston Marathon bombing, I wondered if anyone really could comprehend the form of terror that is the Russian roulette of my wife waiting for her CA125 test results every month which could signal her death sentence. When my wife got her cancer, I stopped fearing terrorism because dying in a sudden explosion seemed tame to me compared to the slow, progressive battering that characterizes
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February 24, 2018
I have debated this very concept with myself, and I have felt two sides. When I have seen the trillions spent to prevent a few terrorist attacks it makes me wonder how many lives those trillions could have been saved if spent on cancer research. When I watched all the sympathy pour out for the victims of the Boston Marathon bombing, I wondered if anyone really could comprehend the form of terror that is the Russian roulette of my wife waiting for her CA125 test results every month which could signal her death sentence. When my wife got her cancer, I stopped fearing terrorism because dying in a sudden explosion seemed tame to me compared to the slow, progressive battering that characterizes
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November 15, 2017
(My original post didn't work, so replying to it)
I agree hope is becoming a very realistic attitude for cancer patients with the exponential acceleration of research and findings. I of course wish the new information and formulations could be made available sooner to patients, especially access for patients with no conventional options (I know that is controversial, expensive, and statistically not shown to be very successful - I don't care). Before the microbiology revolution, hope was a mixed message -- would patients running out of options be better maintaining hope or learning "acceptance". Probably depends on your personality. But now I think we can hedge closer to the hope side because of the incredible research and development of cancer treatments.
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October 25, 2017
Do some research and check low-does maintenance regimens of Metformin, COX-2 inhibitors, and non-specific Beta Blockers with your doctor (all standard available medications). If they would be completely safe for you, they could be considered for a maintenance regimen as there is some evidence they may help impede the cancer from spreading and growing. I could probably dig up article references if you are interested.
All the best,
-SB
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October 25, 2017
My wife was on Lynparza after not responding to another PARP inhibitor, Niraparib, in a clinical trial. Her doctor want her to try Lynparza anyway, then add some temozolomide to see if it helped.
My wife seemed to think she did not feel so good on the PARP inhibitors, although they are usually considered to have mild side effects. I think my wife felt a kind of fatigue, maybe some stomach upset. It is always hard to separate drug symptoms from cancer symptoms from aging symptoms as well as seasonal symptoms (summer vs winter, etc.). My wife had been through many conventional chemo drugs before trying the PARP inhibitors. Her CA125 was very high but she still did not report any
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October 25, 2017
I agree, diet may be a significant factor in going the distance, even if it extends life a small amount. This is a new era where the new lifesaving treatment may be months away, so extending survival is more than just adding some time to your life, it may open the door to a much longer time here on earth. Taking on a healthy diet also creates a positive commitment to yourself and a reminder to yourself that you want to participate in fighting the disease, which may unleash some natural healing powers in your mind and body I believe. It also can take your mind off of feeling helpless and replace it with a sense that you do have some control
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October 09, 2017
Yes, thank you for your generous sentiment and caring for all afflicted. My wife recently died of ovarian cancer after fighting hard for 10 years (she is a rare example). Ovarian cancer is more rare than breast cancer but very hard to survive. I agree with your call for scaling up the research effort. I feel the trillions we have spent dubiously on anti-terrorism could have possibly saved so many more lives, including my wife's, if spent on cancer research. I remember we did feel in competition with the "pink" campaign for dollars (ovarian is "teal"), but I could not begrudge it, breast cancer touches so many women I understand the priority. I hope that the publicity from the
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August 05, 2015
These are thought provoking tips, even for regular chemo patients who have periods of immune downtime. It's hard stuff to do, I admire your acceptance of it and the way you write it up. Even though it is probably hard to be perfect with it, doing it to any degree still increases your odds of staying healthy. Thanks for the article! -SB
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