Talk Cancer

Question:

Thank you. Frank

Response:

My protocol calls

Thanks for posting this, lowkey.  It is quite an education for me, being an inexperienced newbie who has never taken even the mildest chemo.  :-) It’s also *very* well written.  I’ve saved a copy down in the basement of my hard disk.  Would you mind if I used it (with attribution, of course!) if I ever get around to adding a ‘cancer’ section to my web site? — Oisin  "Curly++"  Curtin               http://pages.infinit.net/curlypp/ oligo 3, szr 6/1/2k, biopsy 6/19/2k, rad 30 8/24/2k-10/11/2k,    stable!

Response:

My protocol calls Thanks for posting this, lowkey.  It is quite an education for me, being an inexperienced newbie who has never taken even the mildest chemo.  :-) It’s also *very* well written.  I’ve saved a copy down in the basement of my hard disk.  Would you mind if I used it (with attribution, of course!) if I ever get around to adding a ‘cancer’ section to my web site?

Thanks for asking, and the kind words you and others have said about my posting. Once it is posted, IMHO, all are entitled to do whatever they want with it. You do so with my blessing. Spread it as far and as wide as you can, please. I am humbled and flattered. Bear in mind that the primary reason I decided to post an on-line journal of a clinical trial was therapeutic. It is helping me maintain a state that closely mimics sanity – close enough to fool the layman anyway (but not my wife, surely). It also helps me gather my thoughts and forces me to THINK about what is happening to me. Finally, it allows me to believe that I might, in fact, be able to help someone else work thru the terrible choices I have had to make. By spreading my lab notes around, that wonderful possibility, of helping others thru this, becomes just a tad more likely. In the final analysis then, perhaps I should be asking YOU if you’d add it to your web site, and not the other way around. Once again, thanks. lowkey the lowly lab rat. Aside: I love the hiatus in the ’standard of care’ chemo. I am feeling better and stronger with each passing hour. I have done a full day of computer consulting work, took my indoor cat for a walk in our back yard (on a kitty leash, of course) and cleaned the kitchen after cooking my own humble supper. Even washed the pots and pans. Life is good.

Response:

snipping to Once it is posted, IMHO, all are entitled to do whatever they want with it. You do so with my blessing. Spread it as far and as wide as you can,

please. I am humbled and flattered. Lowkey, your accounts will go at my site, Phoenix5, because they are the best I’ve seen of this journey. I might add that I share your view on the writing. It was what kept me sane. You can find mine at http://www.phoenix5.org/menup5welcome.html I’ll post to the group when I have the first parts of yours on line. Hopefully, it will be this week. I have some other things I’m finishing. Robert Young Webmaster Phoenix5 – Hide quoted text — Show quoted text – Bear in mind that the primary reason I decided to post an on-line journal of a clinical trial was therapeutic. It is helping me maintain a state that closely mimics sanity – close enough to fool the layman anyway (but not my wife, surely). It also helps me gather my thoughts and forces me to THINK about what is happening to me. Finally, it allows me to believe that I might, in fact, be able to help someone else work thru the terrible choices I have had to make. By spreading my lab notes around, that wonderful possibility, of helping others thru this, becomes just a tad more likely. In the final analysis then, perhaps I should be asking YOU if you’d add it to your web site, and not the other way around. Once again, thanks. lowkey the lowly lab rat. Aside: I love the hiatus in the ’standard of care’ chemo. I am feeling better and stronger with each passing hour. I have done a full day of computer consulting work, took my indoor cat for a walk in our back yard (on a kitty leash, of course) and cleaned the kitchen after cooking my own humble supper. Even washed the pots and pans. Life is good.

Response:

My protocol calls for infusions of SU5416 (in polite company, Also Known As ‘The Trail Drug’, ‘SUE’, ‘Ess You’, ) twice a week, for six months. It also calls for weekly infusions of 5FU, LV, CPT-10. These drugs are given for six months as well, and in my case, the schedule is four weeks on, two weeks off. So, I’m in my fifth week. That means I do NOT get the 5FU, LV, or CPT-10 but I do get the trial drug. Due to the Holiday in the Peoples Republic of Massachusetts, my normal schedule of Monday and Thursday chemo was changed, for this week only, to Tuesday and Friday. That gave me one extra day to throw off the nasty side effects of EVERYTHING, and it promises to let me have a couple of weeks where I won’t have to put up with the constant weariness caused by the standard of care drugs. New things I have learned: How to put this delicately…I have mentioned that the protocol sign-up papers have a lot to say about the drug – lots of good info. They INSIST that all participants who get the trial drug use some type of Birth Control. They also plead with the male participants to use a condom or other barrier mechanism. So guys, read between the lines; the SU colors every bodily excretion a bright yellowish orange, so it lets you know where it is. Note the phrase ‘EVERY secretion’. Use a condom. Or if you prefer, just abstain. The SU and the SU by-products have no place inside the body, or even ON the body, of your healthy partner. Other nasty effects. Well, trips to the potty are almost as ‘interesting’ as they are frequent. As a patient in chemo, you should drink a lot of good stuff. It will help wash the toxins out of you after they’ve done their job. It will also keep you active. Its during the forced activity brought on by these unmaskable biological interrupts that one first notices the technicolor side effects of the trail drug. But beyond that, chemo has even more rare and wonderful surprises awaiting you in the lavatory. Yes, yes indeed! You see, I think that ’standard of care’ chemo was developed from recipes for various styles of Cajun and Mexican cuisine. Jalapino’s, Cayenne pepper, Tamales 1,2, Dimethylbenzine and Methyl Ethyl Ketone Peroxide I cannot recall how often I called out this immortal phrase to my beloved wife "Hey, Honey? Could you get the toilet roll I put in the fridge and toss it up the stair to me……. again?" My main complaints: Mild headache, persistent but very mild nausea. The focus in my eyes is constantly changing. Some bouts with loose bowels, followed almost immediately by cramps and constipation. heartburn, burning sensations when using the potty. Toenails and fingernails are getting discolored. On the good side, my weight has stabilized at 191-193. My liver seems okay. Not palpable. My appetite is very good. And I haven’t lost any hair yet. None. The main problems are physical and mental. Terror and Weariness. As the course of chemo progressed, this was my main problem: weariness. It eventually got to the point that I couldn’t even walk around the neighborhood. At the end of last week, I could walk around my yard about a dozen times, but I needed a nap afterwards. And as for terror – well, I had one very bad incident on Easter Sunday Morning, around 3 AM. It takes a tough man to admit he’s a weenie, and I am in the Oscar Meyer class. But, in my defense, I have seen a couple of people, one a very close friend, just up and die. They had my same illness, a bit more advanced perhaps, but still up and around. And they were getting wonderful treatment. More, they were RESPONDING to it. It was working, They were rallying. and seemed to be doing spectacularly! One death hit me really hard. She was released from the hospital. Doing great. Home for almost a week. She was making plans for her Spring Garden on Monday, and on Tuesday morning she was rushed to the hospital and just . . .died . . . wore out. So, knowing I am prone to self induced terror . . . Saturday night, I was dozing in the living room with the TV on. Why not in bed? Well, my sleep cycle was all dorked up by the digestive problems – oscillating between constipation and diarrhea is no picnic at any time. It is less joyous at 2:45 in the morning, let me tell you. In any event, I woke up and felt ‘weird’. Hard to put into text. I was stiff, sore muscles, disoriented, and prickly – like pins and needles in my forehead. I decided it was due to the unorthodox position I took on the sofa, so I went up to bed. As soon as I reclined, I was hit with a bad attack of heartburn. Then dizziness. I got back up to go downstairs and take some stuff… antivert, a bit of Maalox perhaps. Halfway down the stairs, I stopped. The world was spinning around. The left side of my face was numb, and those pins and needles were now down my left arm and my left side – almost to the level of the abdomen. I managed to get down stairs without falling and then I began to check a few things out. Blood sugar was okay – about 135. Temp was normal. Heart was in arrhythmia, A-fib, but it does that when I get scared anyway. Log it down to a reaction, not a symptom of the current problem. The rate wasn’t high enough to be scary in itself. Even though the dizziness was getting worse by the second, I decided not to take any medicines- they might just be the cause of the problem and not a cure. I called the doctor instead, intending to go to the ER ASAP. I was so sure I was gonna go to the ER I woke up my wife (actually, I woke her first, she called the doctor’s Answering service  and I picked up when he called back. And listen to this folks! I called at about 3 am. EASTER MORNING! My doctor was on the phone with me in SECONDS!!!! Less than 2 minutes. My OWN Oncologist, not the covering Nurse Practitioner or another guy in the OC group. MY OWN Doctor!! Eat your little green hearts out!) If I was going to the ER, my wife would have to drive me, or we’d need an ambulance. By this time, the dizziness was so bad that I was keeping my eyes closed as much as possible. Every time I opened my eyes, the world would start spinning on a horizontal axis. And it would try to take my stomach with it. . . I spoke to the doctor with my eyes clamped rigidly shut. After a few questions and replies, the doctor told me what was happening was, without a doubt, scary as all hell, but he assured me that it was not particularly dangerous. If I wanted to go get checked out at ER, that was okay, but he was quite sure that they would not find anything that they could treat any better than I could treat it with the meds I had on hand. (More on this later) He suggested a drug combo to relax me, make me sleepy and to fight the symptoms, then he STRONGLY recommended that I get to bed. He also said if things got any worse, or if they did not improve drastically in the next hour, call back or go to the ER. I feel asleep about 20 minutes later, calm as anything. You see, the answers to what the hell had happened finally dawned on me. The answer? It was very obvious. I have been prone to cluster migraine all my life. When I stopped smoking, the incidence of the headaches dropped dramatically, but I still got attacks about four times a year. When I developed cancer, the incidents of headaches dropped to nothing  . .. BUT cluster headaches are one of several types of headaches that have an ‘aura’ associated with them. You get a warning. In some people, the warning changes from headache to headache, and in others, the warning is pretty predicable. Warnings include bright spots or shimmering areas in the field of vision. Lost or distortion of the peripheral vision, dizziness, nausea, vertigo, stiffening in the neck, numbness in the head or face, runny eyes, etc. Now just because one gets an aura does NOT mean they WILL get a headache. And not EVERY headache will be preceded by an aura. But 10 years ago, if I got an aura, I left work INSTANTLY, while I could still drive. So, what’s this got to do with anything? Well, on reflection, what I was suffering from was an intense migraine aura, perhaps mutated and exacerbated by the wonders of modern pharmacology. It had been so long since my last migraine attack, I just failed to recognize  the symptoms. And my aura isn’t USUALLY like that. It’s usually a few shimmering areas in my left eye and some bright spots followed in 30 minutes by a headache. Usually. So, if these symptoms were so different, why am I so sure it was an aura? Because in 1986, while working in a paper mill on the west coast, I had another aura almost exactly like this one. Face went numb in a matter of seconds, pins and needled down the left side of the body. No dizziness, but THAT 1986 aura was followed by the worst headache pain I have ever suffered in my LIFE – and that was AFTER the people in the ER dosed me up with a quart or so of Demerol (sp?). This 2001 aura – well, as soon as I stopped panicking and let the drugs kick in, this aura was followed by a few hours of peaceful sleep and a very nice Easter. And as soon as I knew it was an aura, I no longer felt that anyone in the ER would be of help to me. Remember I said there’d be more on this later. Well, here it is. You see, I’d arrive there with a heart in a mild form of arrhythmia. They’d pick up the arrhythmia on the cardiogram, but the trace would be very unusual. My specific, classic, well known arrhythmia has been complicated by two Radio Frequency Cardiac Ablations. If I am in a specific kind of afib-aflutter – the kind I drop into rather easily, it makes the cardiogram very hard to read. A board certified cardiologist has told me that it looks scary as hell if one hasn’t seen it before and if the poor sucker trying to read it doesn’t know about the two ablations and their effects on the internal ‘wiring’ of my ticker. And on top of all that, I’d likely arrive … read more »

Response: