MSI Press Blog

  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

  Although it is often difficult to find time to read while coping with cancer or providing care to loved ones with cancer, following one or more blogs on cancer and interacting with them can bring helpful information and peace of mind.  Here is a list of cancer blogs from the CCC. AONN+ Blog Meant for nurses, the topics in  this blog  are nonetheless helpful for any caregiver, such as this one on  compassion fatigue . There does not seem to be a search function, so you may need to sift through the topics to get to the ones you might find helpful, but the topics can be seen at a glance so it is not unduly time-consuming. Cancer Compass This is not a blog per se but rather an  informational message board  seeking to individualize and personalize information and care. Cancer Support Community Blog This blog  addresses specific cancers on a personal level, includes posts on multiple facets of cancer, and is very easily searched. (One cancer that it does not address is cancer of unknown pr

  With the rumors floating about these days, especially inside Russia, about Putin's health and a visiting oncologist, thyroid cancer is in the news. While I have no inside information (thyroid cancer? Parkinson's, growing old? all in the minds of the rumor mongers?) and therefore will not comment on Putin's state of health, I will note that Carl's Cancer Compendium recently fleshed out a fair amount of information related to thyroid cancer (which just might be helpful to people other than Putin who may be exhibiting some symptoms of one of the more treatable, if caught early, cancers). From the site: Thyroid cancer Definition : A cancer that develops in the cells of thyroid gland, a butterfly-shaped gland located just below adam’s apple in the neck. It causes difficulty swallowing hoarseness, lump on the neck, and swollen lymph nodes in the neck.  Types  include Papillary  Thyroid Cancer Follicular  Thyroid Cancer Medullary  Thyroid Cancer Anaplastic  Thyroid Cancer Ca

  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

  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

  By the time, Carl was diagnosed, his cancer was metastized to his liver, lungs, bones, and upper stomach. After many biopsies and scans, the primary could not be found, and the cancer was officially labeled Cancer of Unknown Primary . Impaired Mobility: harder and harder to walk and climb stairs     We associated this with worsening of gout, which had been present for more than a decade     This could have been due as well to cancer-related hypercalcemia and bone cancer Frequent urination     We associated this with normal aging     This could have been related to  prostate cancer (not the case with Carl but the case with many) Pain in the side     We associated this with a gallbladder attack; it appeared similar to what our daughter, who had her gallbladder removed, had gone through.     We did not know that this same kind of pain is diagnostic of liver cancer. Frequent dozing off while working on the computer or watching television We associated this associated with  fatigue from t

  The final conversation had with Carl's oncologist was what we needed in our first conversation but did not get. Not quite two weeks before Carl died, at which time he was in a subacute facility, having fallen the week before, been admitted to the hospital, then shifted to the care facility, the oncologist called us with the results of the latest scans. "Not good at all," he said, and he gave us three options: let nature take its course -- Carl could move to in-hospital hospice or in-home hospice (we chose the latter, and while we had a very bad experience with the initial hospice , it was still the best choice) try out another chemical compound - He told us he had given us the most appropriate and strongest ("the best") that he had, but if we wanted to try another mixture, he would look at other options take part in a clinical trial - He did not of any for Cancer of Unknown Primary and would have to do some research; there might not be any, and there might no

  Today would have been the 54th anniversary for Carl  and me. Last year, I spent it in the cemetery with Carl, as I did the year before. This year I cannot because I am in Bandung, Indonesia, but perhaps that is just as well.  On our 51st, he was alive, but not well. Three weeks earlier, he had fallen, been xrayed, and found to be in the advanced stage of cancer of unknown primary , with liver, lungs, bones, and stomach completely riddled with cancer cells, blood clots in his lungs, and his bones throwing off cells to create hypercalcemia, the reason he had fallen. It was a difficult time. We were just coming out of the covid months. We brought our CHARGE Syndrome son CB who had been living in group homes for 20 years home when they were not careful with protection from covid. At the same time, our spina bifida daughter, who lives about 30 miles to the south of us, independently, with a county-provided part-time aide lost her caregiver to surgery and no one wanted to take over, given