MSI Press Blog

  Today's post is short -- just a link -- but it could be more important than much longer posts. I recently came across the National Comprehensive Cancer Network and its compendium of drugs. Like Carl's Cancer Compendium, this collection of searchable and readily available information is a goldmine that I wish I had had when Carl was dying from cancer. You can check out this rich complication of cancer drugs and information about them HERE .  See other posts on cancer drugs . See other   Cancer Diary   posts. Blog editor's note: As a memorial to  Carl Don Leaver , co-founder of MSI Press LLC, and simply because it is truly needed, MSI Press is now hosting a web page,  Carl's Cancer Compendium , as a one-stop starting point for all things cancer, to make it easier for those with cancer to find answers to questions that can otherwise take hours to track down on the Internet and/or from professionals. The web page is in its infancy but expected to expand into robustness.

  Carl, whose experience launched this blog and the MSI Press's Carl's Cancer Compendium (CCC) died after a very short 5 months post-diagnosis of occult cancer, or, as the official term goes, Cancer of Unknown Primary (CUP).  Carl fell February 23 and went to the local hospital where staff found advanced stage 4 metastatic cancer in five organs and subsequently transferred him to Stanford University Hospital, stating he would not likely return him. He did return home, for a brief four months--and he died at home on hospice almost a month later, having spent only 10 days in that capacity.  Stanford spent almost a month trying to determine the original cancer that had spread to these five organs (none of these organs was the original.) That is the problem with CUP. Finding the original seems out of reach and a guessing game. The doctor made his best guess, based on the spread pattern, but the cocktail he came up with for chemotherapy while doing no harm also did no good. The pro

(photo from Wikipedia)   When traditional treatments are not working, cancer patients may want to participate in clinical trials. We did not have the time to arrange for something like that -- Carl was diagnosed very late and endured a very short time. When the cancer became quite out of hand after just three rounds of chemotherapy, the oncologist offered to "look for" a clinical trial, if we wanted one. Of course, that did not work out because Carl died just three weeks later.  However, the suggestion got us thinking. What would be involved in being in a clinical trial and in finding one? What would be the pros and cons? With subsequent research, which we would not have had time to do on our own, given the speed of Carl's demise, I learned some interesting things. On the positive side, clinical trials may provide access to treatments and drugs not yet in (wide) use and will almost certainly provide personalized attention. On the negative side, there is no guarantee that

A new study from the Memorial Sloan Kettering Cancer Center has revealed a major side effect of the oral medication alpelisib that is prescribed to  breast cancer patients . Read about what the findings were HERE . Sheesh! It is so disappointing -- and frustrating -- to have to deal with the side-effects of the only drugs that can save your life. We went through that a little with Carl's Cancer of Uknown Primary. He did not last long enough to have many side effects. But many, many people do! Fingers crossed for new drugs that are free of bad side effects. For other Cancer Diary posts, click  HERE . 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 Compendium , as a one-stop starting point for all things cancer, to make it easier for those with cancer to find answers to questions that can otherwise take hours to track down on the Internet and/or from professionals. The CCC is expanded and up

  Most patients who end up at the end of life, from cancer or otherwise, experience anxiety and restlessness. Typically, medications are given to help with both of these conditions. Ironically, Carl's last days were very peaceful although he suffered from restless leg syndrome for many years (it disappeared as he entered his final month of life -- probably NOT common). To understand the differences, here are accepted definitions: Anxiety  An abnormal and overwhelming sense of apprehension and fear often marked by physical signs (such as tension, sweating, and increased pulse rate), by doubt concerning the reality and nature of the threat, and by self-doubt about one's capacity to cope with it.  Use words of encouragement and remind them that a panic attack can never harm them and that nothing is physically wrong with them. This is because many people will assume they're having a stroke, or even dying. Reminding them that they are physically okay can help. Typically when so

  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

  When Carl came home from the hospital and was put on in-home hospice, we, the members of his family (my daughter had come from the East Coast with her family and my son had come from Sacramento), did our best to learn all about his medical needs. The kids had come home because it was clear the end was near, and we wanted to make sure that his time at home was as pleasant as possible, surrounded by family. We learned about the various medications he had been taking and would be taking. He was not able to communicate well by then, but he had quite an arsenal of regular pills that he took every day, and once he stopped being able to sort them out himself, we had to figure out which he needed when. He was also given new drugs -- morphine, which he used only a little of, and an anti-anxiety drug, which he never needed. With the morphine, instructions were unclear, and we guessed at amounts. Checking in with the hospice nurse, we learned that we were giving a 300-pound man the dosage that

excerpt from How to Be a Good Mommy When You're Sic k by Emily Graves -  Remembering The following checklists are meant to be used as a quick reference or as reminders as you reflect on areas of your life that you may be able to improve or make easier using the information discussed throughout the book. Sleep •        Establish a sleep routine for your family. •        Be prepared for the initial battle to establish that sleep routine. The first week will be difficult but you can do it. Use your will to make this happen. It will benefit your entire family. •        Make a list of how an established sleep routine would positively impact your and your family’s daily lives. Use this as encouragement during the initial battle. •        Make sure your established sleep routine includes an adequate amount of sleep for each person involved, especially yourself. Being exhausted exacerbates chronic health issues. Do not leave yourself out of this process. •        Include a nap for yoursel