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Cancer Diary: Immunotherapy Update

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  image from www.cancercenter.com When Carl was diagnosed with cancer, our vet-oncologist, who was successfully treating several of our cats who have various forms of cancer -- skin cancer, lymphoma, breast cancer, lung cancer -- with immunotherapy and encouraged us to ask for immunotherapy for Carl. If only... As it turned out, immunotherapy has to be targeted as the primary cancer organ, and that organ could not be found for Carl, who was eventually (but quickly) diagnosed with cancer of unknown primary (a very rare and deadly form of cancer, but we have heard of a couple of other folks in our social circles who experienced it -- and died as quickly as he did). Fortunately, for most of the organs, there are now immunotherapies (and research is finding/creating more). So, most people now have a choice between chemotherapy and immunotherapy -- and maybe some other treatments. For an updated list from the Cancer Research Institute on the latest immunotherapies, check here . This page a

Cancer Diary: Yeah, Carl Lost a Lot of Weight, but It Was Nothing to Celebrate

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Carl, so proud in his new, smaller, fully fitting Scott vest   Indeed, several months before Carl was diagnosed with advanced metastatic cancer (stage 4), he lost quite a bit of weight. Nearly 50 pounds overnight. Now, he was big, very big. Any weight loss, in our thinking at the time, was to be applauded. And so, he ordered s smaller Scott vest and showed off his new slimmer self. (Not slim, mind you, but slimmer -- he was still nearly 300 pounds when he died.) What we did not realize -- and I certainly wish we had is that such a weight loss is not to be celebrated. It is a sign of dying, or at least, of advanced cancer. Instead of showing off his success ("achieved" -- more accurately, "experienced" -- though he was not on a particularly regimented diet), he should have been rushing to his doctor and asking, "What is wrong with this picture?" Perhaps, hopefully, the doctor would have figured out the cancer diagnosis early enough to do something about it,

Cancer Diary: Some Doctors Will Not Recommend Hospice until Too Late

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  I like to follow the blog of Barbara Karnes , hospice nurse par excellence. Much of what she has to say to hospice nurses about end-of-life issues in general apply to caregivers of cancer patients in particular. Her latest post, " For some doctors, it just isn’t in their tool kit to stop trying to treat,"  reflects our experience very well. Only when Carl fell and needed four people to lift him and get him to the hospital and x-rays showed complete take over by cancer of four major organs along with blood clots in his legs and lungs did the doctor suggest hospice (although he also expressed a willingness to continue treatment -- a different treatment -- if we wanted). We chose hospice, but the period of time was short. Carl returned from the hospital and went on hospice August 7. He died August 16. I have always wished that the doctor had put the hospice option in front of us much earlier, perhaps even at the beginning of the 5-month period during which the doctor tried eve

Cancer Diary: Cancer Is Not Cancer Is Not Cancer Is Not Cancer

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  Recently on Twitter, a cancer victim complained that friends kept elatedly sending her information about a potential cure for rectal cancer. She suffers from breast cancer! Sort of like rubbing salt in a wound, but the confusion is understandable for those who know little about cancer. Our vet (oncology expert) suggested that we ask Carl's oncologists to consider immunotherapy for Carl. We clung to that possibility initially since immunotherapy had thrown our little Snyezhka into full remission after having been given a maximum of four months to live. Nearly two years later, she is still with us and is healthy.  Carl was given just days to live when he was diagnosed with advanced metastatic cancer involving five organs. We clung to the hope that Stanford University Cancer Center might recommend immunotherapy; that was one of the possibilities the oncologist mentioned. Yes! However, immunotherapy is highly targeted -- against the source cancer. Test after test ruled out each of th

Cancer Diary: High Heat/Charred Meat, a Surreptitious Potential (Likely?) Cause of Some Kinds of Cancer

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We love grilling. Carl had quite a reputation for grilling hamburgers, hot dogs, salmon, and more, a tradition carried on by his children (son Shawn in the picture) and grandchildren (granddaughter Neela in the picture). Friends, family, and neighbors always loved coming by for Carl's BBQs.  Then, Carl fell and was diagnosed with stage 4 Cancer of Unknown Primary , which is an aggressive cancer, leaving little time to cope with rapid changes , let alone grilling or any kind of final fun. His oncologist thought that the primary probably was in the GI tract. Carl had skipped his colonoscopy (no one should ever do that). He was treated with a generic mix of chemicals as well as a mixture for colorectal cancer. It was too late! What we never realized during all those years of grilling was the potential connection between grilling and cancer. Had we known that, maybe Carl would have grilled less or differently. Perhaps he would have been more diligent about getting his colonoscopy. By

Cancer Diary: Focus on Living? Focus on Dying? An (Almost) Unwinnable Scenario and Two Different Paths Chosen

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  In March, Carl was diagnosed with advanced stage 4 (metastatic) cancer of unknown primary. In August, he died.  When we got the diagnosis, we had to choose a detour from our normal life. There was no way to move straight ahead with life as usual because, you see, there was this big obstacle, called cancer, straight ahead. So, the question was to detour to the left and choose a treatment option, hope, and focus on the living or detour to the right and let nature takes its course, choose to accept the situation at face value, letting nature take its course, and focus on the dying. To fight or to surrender? There was no logical superiority of either path, not knowing what lay behind the cancer tree and how long was the path for it  continued out of sight. We decided not through reasoning but through conditioned reaction to fight. That is what we had done all our adult lives, as we successfully navigated life for four children, two with rare birth defects, and three grandchildren, two wi

Cancer Diary: Pelé, Another Victim of Colon Cancer

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  Earlier, Cancer Diary reported on the death of Kirstie Alley due to colon cancer. Now another well-known person has died from it: Pelé.  Carl Leaver , MSI Press typesetter and co-founder, died of Cancer of Unknown Primary ; however, his oncologist suspected that it started as colon cancer (though, typical of CUP, the colon was clean by the time CUP was diagnosed at advanced Stage 4). Carl had skipped his colonoscopy, not with a great deal of thought but just because he did not want to be bothered with it at the time. Advice to everyone: be bothered with it! Read about the symptoms of colon cancer and issues of colonoscopies HERE . There is also a good deal of information about colon cancer at Carl's Cancer Compendium (cancers are listed alphabetically). Click HERE for more Cancer Diary posts. Click HERE for more posts about colon cancer. Blog editor's note: As a memorial to Carl, and simply because it is truly needed, MSI Press is now hosting a web page,  Carl's Cancer

Cancer Diary: Palliative Chemotherapy

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(Carl, returning from chemotherapy, getting out of car and onto chair lift)   An inescapable decision--and a potentially life-changing one--can be whether or not to provide chemotherapy at advanced stage 4 of cancer. Chemotherapy given when a cancer is incurable (and side effects are minimal, manageable, or acceptable) is called palliative chemotherapy .  As with nearly anything medical or existential, there are pros and cons.  On the PRO side are the intents (if actually realized) shrink the cancer reduce the symptoms (e.g., pain) improve quality of life prolong life On the CON side are the peripheral aspects uncomfortable and/or disconcerting side effects (the same that accompany any chemotherapy: nausea; neuropathy; in the case of some compounds, hair loss) "end of life" chemotherapy can feel like grasping at straws, especially when/if the intents are not all met or met at all (an emotional side effect of depressions, desperation, anger--it depends upon the person) difficu

Cancer Diary: Skin Cancer Awareness

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  May is Skin Cancer Awareness Month. That gains attention close to home. I just had stitches removed from skin cancer surgery (last week).  According to my surgeon, skin cancer can take the form of melanoma , basal cell carcinoma , or squamous cell carcinoma . Of the three, melanoma is more dangerous because it spreads easily and quickly. Squamous cell carcinoma and basal cell carcinoma can usually be excised.  Both my late husband and I have experienced squamous cell carcinoma. For him, it appeared like a little horn on his forehead. It was easily excised and left no scar. Mine was more insidious. An "age spot" appeared out of nowhere, then grew, then changed shape, then because pussy, bled, and itched. The Skin Institute did not believe it was cancerous, but I insisted on an early biopsy -- and I was right. When something appears to be very wrong, it usually is very wrong, and the patient is still his or her own best advocate. We were fortunate. With squamous cell carcinom

Cancer Diary: And this is how it happens when Stage Four is the first diagnosis

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  A recent article brought back a raw memory:  Dad died 44 days after his cancer diagnosis. He never received the chemo he was promised (msn.com) . That was pretty much what Carl experienced. He fell February 23, was diagnosed with late stage 4 cancer in five organs, and was set up for testing to determine the primary (never was found, and the diagnosis became cancer of unknown primary ). He had to wait to begin chemo until he could receive the second covid shot (remember back then?). Once all the tests and shots were over, it was the end of June. He received three rounds of chemotherapy before falling again on July 23, at which time, tests showed that chemotherapy was not working. From that point, it was only 23 days until he died. It felt like chasing after water as it was flowing over a waterfall. No way to keep up. Would those original 4-5 months have made a difference had he started receiving chemotherapy earlier? It is impossible to know. Could those early tests have been pushed

Cancer Diary: (Not) Talking about Death

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  When Carl , MSI Press LLC graphic designer and co-founder, was dying from cancer of unknown primary , which has a very grim prognosis and no routinely accepted treatment, he wanted only hope -- that he would be in the 1% that has been reported to survive CUP at least for a year or more. He steadfastly avoided talking about death with his children, friends, and me. He resolutely did not want to talk to a professional of any sorts although he was willing to talk to a priest friend. Unfortunately, he was semi-comatose and near death before even one meeting could take place, given his frequent unplanned trips to the ER and regular trips out of town for chemotherapy. (The oncologist made an educated guess as to the possible primary cancer and gave two drugs, one a wide-sprectrum which generally does not work well because it is not targeted and the other targeted against his best-guess that the cancer started in the GI tract.) So, when the priest was finally able to connect with us, it was