Update on the battle
Posted: Sun Jul 30, 2017 1:10 pmThought it is time for an update on us. As most know, my hubby, Mel, has been battling a very rare palate tumor since June of 2013. Now in 2nd recurrence battle. Having won over prostate cancer in the intervening time. Cancer has reappeared in his chest beginning late last year, growing unfortunately. After a chest biopsy and numerous scans, and being told maybe then, I got nothing, by a Fellow ( a Dr taking extra training beyond normal specialty training) several times, I got fed up and fired him. Due to encouragement of a couple of high school friends plus a friend of one who spent a career as a geneticist, I got Mel assigned to a attending physician at UCD who seems determined to help. We are in midst of testing, haing been approved for a two drug ( oral not iv) trial in its latter stages of testing. He needs a chest biopsy and EKG, plus a physical and blood tests before, hopefully within a week he will begin the chemo drugs. That will entail a all day stay at UCD to have blood drawn before and after first dose of the drugs, a total of ( yikes) 10 blood draws through the day! He will be on a cycle of taking the drugs at home or at the hospital,some days with being there for blood draws some not. A couple of weeks in he will have a scan which will either show the two largest tumors are either same, smaller or larger. As long as they are not a lot larger, the cycles of chemo will continue. The drugs are in 21 day cycles I think she said with a week off between. Fortunately at this dose, we are told most have only mild side effects such as nausea, without vomiting, and fatigue. We shall see. He remains hurting from arthritis and can't take conventional pain meds for that so takes powdered cannabis in his morning and evening puréed meals which he says makes that tolerable. What has been difficult is the cancer is irritating the lining of his chest where the tumor is growing ( not IN lungs but around them in pleural lining of chest) it is producing a lot of fluid which is pushing both on nerves and on his right lung. It's caused a lot of pain making sleep difficult but the new Dr ordered a Lidocaine patch to apply nightly for 12 hours ( longer produces tolerance so it won't work). It helps some, but pulmonary Dr plans tomorrow to drain some fluid to see if that reduces his pain by reducing the pressure. It will be a busy week as radiology tries to fit in the CT guided biopsy and the chest Dr does drainage and maybe a trip for physical and EKG and labs. Mel continues to putter around the house when he feels up to it and likes to help with cooking. He is maintaining his weight and looks pretty good but pain can wear you down. He is not ready to give up by any means. Neither am I. I have another oncologist standing by away from UCD if this Dr stumbles or this trial doesn't work. Sometime in all this I hope to get my van across town to the generator repair place to get that done. I want my van boondock capable for just in case. I have solar but with this our 23rd day this summer at or above 100 and at least 5 more 100 this week!! I would need generator for AC. I so hoped we could enjoy alittke trip like a weekend but just haven't done that because of his ongoing pain. The good news is, if these drugs (one taken first helps keep the cancer killing drug in his system longer, thus killing more cancer), help we will know soon as a few weeks, then he can stay on them indefinitely, as long as they seem to help. Also every month and year we buy brings other drugs that may help if this stops working. As the new DR, who I really like, says, it's about slowing or hopefully stopping growth and fluid production of this cancer so he can live with it on a chronic basis since its unlikely it can be completely cured- its a very nasty bugger!
I do my best to get rest and go to Curves and keep my health up. We both began the very low carb Ketogenic diet in May, him because it has shown promise in early study in slowing or stopping some cancers, and me to finally lose the weight I have put on over many years. His weight is where he wants it and his insulin needs for his type 1 diabetes has decreased greatly ( insulin pushes glucose into cells including cancer cells) so his insulin needs have dropped more than 60%! That's a very good thing ! His endocrinologist was so pleased. And yet the stupid American Diabetes Associaton continues to push 40 to 70 carbs a meal! But that's another soap box of mine!! LOL meanwhile I've lost about 23 lbs and counting since Late April!
Velda and Mel plodding along in Roseville in Noethern California
I do my best to get rest and go to Curves and keep my health up. We both began the very low carb Ketogenic diet in May, him because it has shown promise in early study in slowing or stopping some cancers, and me to finally lose the weight I have put on over many years. His weight is where he wants it and his insulin needs for his type 1 diabetes has decreased greatly ( insulin pushes glucose into cells including cancer cells) so his insulin needs have dropped more than 60%! That's a very good thing ! His endocrinologist was so pleased. And yet the stupid American Diabetes Associaton continues to push 40 to 70 carbs a meal! But that's another soap box of mine!! LOL meanwhile I've lost about 23 lbs and counting since Late April!
Velda and Mel plodding along in Roseville in Noethern California