Adenoid Cystic Carcinoma - One Man's Chemotherapy Journey

© AUTHOR: Steve Kenney
*reprint by permission of the author only*

Date: Fri Mar 17, 2000 11:25 am
Subject: CSCGP(Chemo Sissy Club Guinea Pig) Diary

Monday 3/13/00 Only preliminary tests to take but still a big snafu. I was told to come in for 3 tests at 10AM. Arrive at 9:45 to find them all scheduled for 10. No phone or mail notification either (at least my last medical facility was good at that part). No one seems to want to make a decision, so I tell what I will do. I go and have my blood work done since their is no line. All goes smoothly (I have huge veins for them to stick needles in, a real plus), except nurse keeps all the paperwork I was given. She says they were all for required blood tests. I still have HMO referral for CT and EKG so its OK. So off I go to CT Scan. There I find I should have come in last week and got some barium to take Sunday night and Monday before coming. So I have to go into 2nd option mode and I am given a glass of goo to drink at 10:30. Then given 2 syringes to put into juice and take at 11:30 and then get the scan at 12:30. I tell tech to give it to me to go. So I'm now off to take EKG. Here the tech has a fit because I have not been to central registration (checked in thru Cancer Center as always) and CT dept. has kept all my paperwork. Spend 20 minutes waiting while this Tech is told by everyone to give me the test and they will straighten it out later. Once wired EKG takes 20 seconds. Now go home (live 10 minutes away, another plus). Mix up a batch of goo and drink at 11:30. Kill time and return to try CT again. All goes smoothly and I am back home at 1:22. So 1 hour of testing took 3 hours and 40 minutes and 2 parking fees (don't get me started on patients paying to be guinea pigs!!!). Now the wait till Thursday at 10AM and the Big Shot begins. Have to start my ST. Pat's day party early.

Date: Fri Mar 17, 2000 1:14 pm
Subject: CSCGP Chemo Trial Diary II

Big Snafu number 2. The Big Shot is postponed for 1 day since I was to have taken steroids yesterday. Not having been informed I hadn't. So we try again Friday 3/17/00 at 11:30AM. Not what I had planned for St. Pat's Day. After checking we find that, the trial coordinator has left the hospital (unknown to me as to why, but give me time) and my onco's nurse was off in Feb. and that is why the lack of communication. I hope things go smoother because snafu #3 and I will have to vent steam! However, we run thru the lab results and all are normal except the tumor in the liver, in 2 months, has grown from 4CM to 6.9CM. Better news is that carotid/ear canal tumor, radiated in Oct. 99, is not showing up on CAT Scan. Balance of small lung and liver mets show no change. General health is good and have no pain from liver, no elevated blood pressure (resigned to being abused) and weight steady (had been gaining). Trial coordinator and I go thru the side effects and testing to be done during and after the trial. Most were minor (maybe some nausea & likely numbness/tingling in tips of fingers & toes)(I need to self-inject in muscle or have nurse do it, medication for 7 to 10 days after Big Shot to raise white cell count to fight infections, the biggest risk)(Big Shot given once every 3 weeks)(2 Big Shots and then retest to see if tumor stable or shrinking)(If effective then we go on) Seeing no big downside except infection risk (guess no Frenching) I sign the rest of my life away. Only kidding! I can quit the trial at any time but they would like to follow me the rest of my days. Oh yes, more good news! If I can stomach it I may have my daily beer ration. So off I go for my steroids. I take the day before, day of & day after The Big Shot. More tomorrow.

The Big Shot is now The Big Drip! Arrived at Cancer center at 11:15AM to run thru the schedule of chemo, white blood cells booster shot and blood work. Being a trial I have to take more tests than is normal for approved amounts. The schedule in 3 week cycles goes like this: Day before, of and after the chemo take heavy duty steroids. Day of chemo weight, blood pressure and general health. 2nd day after chemo and from 7 to 10 days, thereafter, take shot to boost white blood count. These can be self given like insulin in muscle. 3 times weekly have blood work done. Finally the moment I feared most. The procedure was done in a nicely appointed individual examining room. I sat in a lounge chair with my coffee, crossword puzzle and my wife (Lisa) sat across room reading. I was hooked up to saline IV and automatic blood pressure cuff. Then nurse was off to get the good stuff mixed and warmed. 10 minutes later she was back and The Big Drip was started. During the next hour, I worked and completed my crossword, took anti-nausea pill w/ cranberry juice, drank coffee, kept calming my wife down and was enlisted into another trial about effects of disease and treatment on my expectations and goals (that is why guinea pig II in title) filling out their forms. Then the IV was pulled, The Big Drip was over! I was given times for shots and blood work and the wife and I were off to lunch. I drove! It is now 10PM and after having a steak and potatoes dinner I have felt nothing from the chemo. Only effects I have are a red face and some facial warmth from the steroids. In true St. Patty's fashion I took my dose this evening with a Killian's and a get well toast to all our members! To be honest, most side effects from chemo take from 48 to 76 hours to start. Will keep you informed daily I hope. If all goes well, the balance is as follows: Take 2 cycles. Have CT scan. If liver tumor and balance of mets have shown no growth or receded then we go on. If they are still growing then we stop and I pursue other methods, ie. surgery or radiation. If we go on then we keep going till it stops working with CT scans after every 2 cycles. If it goes away completely then 2 more cycles and its over! Now off to bed since between my steroids, my wife's nervousness and my 3 dogs I only got 3 1/2 hours sleep last night.

Date: Sun Mar 19, 2000 4:10 am
Subject: CSCGPII DIARY FOR SATURDAY MARCH 18TH

Pretty uneventful day, this first day after The Big Drip. Slept from only 1AM to 5AM (the steroids). Got my coffee going and did my daily crossword solving. I hate Saturday's puzzle, too many big words. (the Chicago Tribune-tempo section) Then re-read all my trial info to get it fresh in my mind. The steroids are to prevent fluid retention to help flush out the kidneys. I took the last tonight until the next cycle. The shots, starting tomorrow, are to boost the white blood cell count to hold back infections. Still no noticeable side effects from the Taxotere (Docetaxel). I am to take plenty of liquids and 6 small meals a day avoiding spicy and greasy food (all my favorites). Just a note: I did find out what happened to my original trial coordinator. She had child care issues and retired for a spell. I did normal stuff all day. Hacked around on the computer, chatted with the Sisters of Bloat, put in a new circuit breaker for my family room, watched some B-ball, ate only 4 meals but kept up with the liquid intake. Snafu #3 is shaping up but won't be resolved until Monday's diary (such suspense).

Date: Mon Mar 20, 2000 2:21 am
Subject: CSCGPII DIARY FOR SUNDAY MARCH 19TH

A little more sleep last night as from 12 to 6:30. Did my usual coffee, read Sun paper and then the crossword (95% of Sun - pretty good for me). Went to the hospital emergency room around 9 for the 1st of my booster shots. Took about an hour but that included 10 minutes to see if I reacted to 1st one (didn't) and 10 minutes more to finish magazine article I had started. Got home and did Cheerios for food and then went office supply and grocery shopping with Lisa. Back home and made power smoothie to satisfy liquid and protein needs. Spent the rest of the afternoon installing and trying out a new All-in-one printer for the computer to upgrade for our business. Time outs to play with dogs, catch some B-Ball tournament action, etc, etc. Had dinner, soup, fish, bread, cukes and tomatoes. I can't hack 6 meals a day. Too much time wasted. Will have some cherry pie later. No side effects from shot. Some residual from steroids but are receding and I'm off them. Nothing yet from The Big Drip. On the outside but we hope something on the inside. Not much sleep tonight because I'm up at 5AM to get to my far southwest surgeon for a checkup. My HMO loves me as I keep changing systems to get treatment!

Date: Tue Mar 21, 2000 11:22 pm
Subject: CSCGPII DIARY FOR MONDAY MARCH 20TH

A very lethargic day! I had to get up at 5AM for early ENT surgeon's appointment. Thanks to Chicago traffic took 1 hour and 20 minutes to get there and 45 minutes to get home. All is good w/surgeon and return in 6 months. MRI and radiologist in 2 months. Had bagel and read balance of paper and then puttered around office making catalogs. I have some muscle and joint aches and do feel tired. I think The Big Drip kicked in! Lisa and daughter were out shopping and called to meet them for lunch. Off to Jewish Deli: mish-mosh soup (chicken broth, rice, noodles, kaisha, krepluch, motza balls)(6 bucks for soup?) chopped liver and other stuff. Ate pretty good. Then home to take a nap. 1st nap in four days and it felt good. Then off to Cancer Center and blood work and blood booster shot 2. We just sign in and get blood work forms and go 20 paces to blood room. Usually empty or 1 other waiting and so we are in and out quickly. Then hit the waiting room for a couple of minutes and they call u for the shot. 15 to 20 minutes and you're out. Less shot only. It is very informal and cheery and there are lots of others coming and going. My trial coordinator informed me that the muscle and joint ache is from the booster shot. It stimulates bone marrow growth and that is what is pressing on joints. I really feel it where surgeries were done. Not sharp pains, just dull achy. So, still nothing from The Big Drip. All side effects from the add-on meds. Oh, well. Back home and have another nap! Another daughter and the granddaughter come over for dinner. Got down the rest of lunch's soup, 2 cheeseburgers sans buns, and some kernel corn. I packed on a few pounds to get ready for this so I won't waste away. Usually have ice cream before bed. Worked with daughter tweaking up the computer and the balance of the evening spent napping and watching TV.

Date: Wed Mar 22, 2000 10:10 pm
Subject: CSCGPII DIARY FOR TUESDAY MARCH 21ST

Slept better last night for a change. Might have been good except for a sick dog going out every 3 hours. English muffin w/ orange marmalade is today's change. Did crossword in 30 minutes (must have been easy one, huh), but Jumble vexed me all day. (do jumble only if I finish crossword, usually) (if crossword is too tough, I quit, and do jumble) Due at Cancer Center at 9:30 to get shot. I'm not too fond of previous afternoon, next morning but it can't be helped. Spent the balance of the morning writing a few letters and doing yesterday's diary (was doing it before bed but lack of sleep caught up). Just beet borscht and sour cream w/ crackers & milk for lunch. The afternoon is spent working on items for our business, quick checks around the web for e-mail and messages, 11/2 hour. Dinner was clam chowder, chicken breast (whole roasted not little boneless things)1/2 yam, some cukes and tomatoes w/ glass of milk. 1/2 pint of Ben & Jerry's later that night. I have stopped my daily ration of beer. Dr. said I didn't have to but it could do more harm than good. Lay down on couch to watch TV and when the Millionaire was over so was my day! Slept thru the night with only 2 let me out from the dogs. Note: There will be a supplement for today’s diary posted separately. I am going to list all the side effects that can occur with my meds and tell you what is affecting me and how. This will give you an idea about the medicines and there reactions to a large group and just 1 person. See you Wednesday.

Date: Fri Mar 24, 2000 2:30 am
Subject: CSCGPII DIARY SIDE EFFECT SUPPLEMENT

I will list the drug and the effects as they are on my trial sheet. I will give you yes or no and what the effect on me is. Dexamethasone (steroid - stops fluid retention) More common: indigestion - no nervousness, restlessness, trouble sleeping - yes, all were felt. increase in appetite - no remained normal elevated blood sugar which could aggravate diabetes - no less common: loss of calcium from bones, possibly causing bone fractures - no broken bones yet weight gain and fluid retention - no weight same and fluids just run thru me. muscle wasting and weakness - no acne, rash, changes in hair & skin - yes started rash yesterday but all 3 drugs can cause rash, no to rest. increase risk of glaucoma and cataracts - no to this point. menstrual problems - no stomach ulcer - not yet increase in blood pressure - no staying pretty steady. increase in white cell count - offset by loss using docetaxel - increased susceptibility to infections - no, at least no infections at this point. elevated moods, depression, psychosis - no, my wife may think psychosis (who's watching?) rare: increased facial hair growth - no, thank goodness. increased sweating - no vision problems, including bulging of the eyes - yes, trouble focusing and feel some pressure inside but no bulge. Taxotere (Docetaxel) More common: lowered white cell count risk of infection - yes but no infection so far. lowered red cell count risk of anemia requiring transfusion - no lowered platelet count which can cause bleeding - no, needles and shots show regular clotting. temporary hair loss which may be total - no, but it won't take much to lose it. mouth sores - no, but mouth feels like when you first wakeup and it lasts all day. Food taste a little off and spicy stuff irritates. skin rashes are common (severe in about 5% of cases - yes, back from neck to bottom of shoulder blade and left neck by Adam’s apple. nerve damage, causing numbness, tingling or burning sensations in hands and feet - no Less common: fluid collection in the body, especially in the hands, legs, and sometimes around lungs or heart which may result in difficulty breathing. Dexamethasone is given to help prevent this - no. color changes to finger and toenails may occur. In rare cases, nails may fall off - no. pain in muscles and joints - yes, not bad but there. headache, weakness, fatigue, loss of appetite - yes, weakness and fatigue, no to rest. nausea, vomiting and diarrhea - no, to all (thanks). abnormal blood tests of liver function - no. irritation of the eyes (conjunctivitis) - yes as noted earlier. Rare: allergic reactions causing skin rash, difficulty in breathing and a lowered blood pressure - no. skin irritation and swelling if drug leaks from the vein into the surrounding skin - no, but had no leaks. irregular heart beat, heart failure - no, still typing. liver failure (resulting in death) - sure hope it's no. intestinal bleeding and sudden death - see above inflammation of the pancreas - no, have no idea where it is, either. irritation of the esophagus which may lead to chest pain or difficulty swallowing - no. G-CSF (Filgrastim, Filgrastim) More common: pain in muscles, bones and joints, usually relieved with acetaminophen - yes!! Less common: redness, swelling, itching and pain at the injection site - no. Rare: allergic reaction, characterized by skin rash, itching, flushing, chest pain, rapid heart rate, and low blood pressure - no. elevation of enzymes found in the bones and liver - ?? minor changes in uric acid levels, which may worsen of bring on a case of the gout - no. rash, or worsening of a rash already present - well I have rash and it gets worse, for now. increase in size of spleen - CT to know. headache - no. flushing or low

Date: Fri Mar 24, 2000 2:54 am
Subject: CSCGPII DIARY FOR WEDNESDAY MARCH 22ND

Pretty good night! Long nap early, ice cream and TV around midnight and only 1 bathroom break (for me not dogs) till morning. Crossword done except for 2 words and jumble also finished. Bowl of Cheerio's and then off to the Cancer Center for the drawing of the blood and shot. Moving about like a little old man thanks to the joint aches. Nothing really hurts bad, it is just all the little aches. Take nap and wake up feeling good for 30 minutes and then start regressing till next nap. Bursts and slowdowns. Spent most of the day running off catalog pages for our business. We have to mail about 75 of them, around 20 pages each, in the next few weeks. Not hard but it sure is boring. Also spent time adjusting watch sizes for some of our retail customers. That was more difficult because of the eye pressure and focusing (see supplement). Had English muffin with extra chunky peanut butter and a tin of pineapple for lunch. During the early afternoon I started to get a rash on my back, covering the shoulder blades, and a spot on the left side of neck by the Adam’s apple. Not bad at the moment, like mild poison ivy. Dinner was late as we did invoices so we could ship orders tomorrow. Soup (lousy chicken noodle), pork chop, mashed potatoes and asparagus. TV & naps and that was balance of the day. This is exciting, huh?

Date: Sat Mar 25, 2000 3:10 am
Subject: CSCGPII DIARY FOR THURSDAY MARCH 23RD

All around a pretty lazy day. Just a note: I am taking 4 to 6 500mg Tylenol 2 to 3 times daily. No pain is very hurtful but feel weak and achy. Got thru the night and up at 7am, for my longest night of rest. Crossword and jumble both completed. Muffins and jelly for an uninteresting breakfast. Went to the office supply store and then took a nap after making some business calls when I returned. A couple of grilled cheese for lunch and then another nap. Off to the Cancer Center for shot and visit with Doctor to look me over. Doctor's report is that I'm doing good, rash probably won't spread more, but will intensify in the areas it now covers. Next 3 days will be the worst and if a fever develops I am to go to the hospital. Infection is the big worry. Then I will slowly recover to take the next Big Drip. Went grocery shopping on the way home. (No baggers and a new scan clerk - my luck). Dinner was a disaster. Tried to eat chili and the spices just killed my mouth. Had cheese only pizza to follow but couldn't get much down from mouth burn. A couple of hours on the computer and that was the end of day 6. Note: Another Doctor heard thru the grapevine of my testing Docetaxol and called my oncologist about his ACC patient.

Date: Sun Mar 26, 2000 4:42 pm
Subject: CSCGPII DIARY FOR FRIDAY MARCH 24TH

Day off to a lousy start. Awakened at 5am by back spasms. Immediately gobbled 2 Tylenol and settled in with the crossword and coffee until they could take effect. Both Lisa and I were scheduled for the Doctor's and cancer center around 9am. We got ready to leave and our Tahoe would not start. Lisa ended up taking a cab to her 3 appointments and I waited for the tow truck. While waiting I had to pack and get ready to ship 7 packages for our business. This was quite a chore as I had a lot of achiness in the thighs and hip area. It was painful to move around. Lisa got back around 12:30pm at the same time as the tow truck arrived to haul the Tahoe to the dealer. Now it was my turn to cab it to the cancer center to get the blood work and my daily shot. Then home for naps and rests the balance of the afternoon. Late dinner of clam chowder, baked potato & beans with cukes and tomatoes. Then daily diary, TV and off to bed.

Date: Sun Mar 26, 2000 5:04 pm
Subject: CSCGPII DIARY FOR SATURDAY MARCH 25TH

The best and worst of days! Woke up at 5am and stayed up. Just tired of sleeping. Felt great! All the achiness in joints and muscles was gone and the rash itch was not very prominent. Did most of the crossword (usually get very little of Saturday's done - long words) and did the jumble. Had a 3 egg cheese omelet and toast for breakfast, read my e-mail and posts and thought the day was going to be OK as I headed off to the hospital for my shot. By the time I got home my day was done. All energy and desire to do anything was gone. I spent the rest of the day in my lounger, watching TV, napping, and doing little else. Played ball a few times with the dogs and forced myself to write Friday's diary page but never did put it online. Had cheerio's, mid-afternoon, and dinner of soup and macaroni and cheese but they tasted crummy. The funny thing is that my mouth feels better today, also. The filmy feeling and soreness are gone. But food does not taste good at all. So a strange day all around. Felt better but day seemed like a big downer!

Date: Mon Mar 27, 2000 8:46 pm
Subject: CSCGPII DIARY FOR SUNDAY MARCH 26TH

A good day! Finally! Up at 6am and my usual morning routine. Just added an hour because of the bigger Sunday paper. Off to the Hospital for the last shot? (if white cell count is OK Monday) and then home to get some work accomplished. I actually do some work for the business and get the diary stuff done and posted. Watch basketball and golf, on and off all afternoon, while still working. I even get through the entire Academy Awards show without conking out. No naps all day! The aches and pains are pretty much all gone. The rash is starting to dry out and doesn't itch too much. No pills all day. The only negative is that my taste buds are still shot. Food tastes bad. I get a little of everything down but not a lot. Oh well, I got myself 10 lbs. overweight going into this, so I have some cushion (no pun intended) (yeah sure). Now start wondering if round 2 will be much worse?

Date: Tue Mar 28, 2000 9:53 pm
Subject: CSCGPII DIARY FOR MONDAY MARCH 27TH

A mostly good day! Up at 5am again, can't seem to sleep late. I puttered away the early part of the day with extra time to kill since blood work not till 10:30am. After blood screen came some good news! White cell count was high at 35.9 (don't ask me what number means) and I don't need anymore G-CSF shots this round. Had to get a prescription to get Friday's test done on the road since I will be in Cleveland, Ohio. Spent the day working on business to get ready for the show and running to the dealership, checking on the truck status. We finally got it back late in the day. Only blip in an uneventful day was that I crashed about 4:30pm. Felt tired and stomach was a little queasy. A nap and dinner seemed to do the trick and I felt OK the rest of the evening. Splurged for lunch (tired of what was in the house) by going to my favorite hot dog joint. Cheddar burger and cheese fries! I usually have jumbo char dog, but with mustard and onions, and did not want to mess up stomach. Still tasted a little off but got most of it down. Dinner of clam chowder, salmon, with asparagus was a little better. A short nap and surfed around online the rest of the evening.

Date: Tue Mar 28, 2000 10:45 pm
Subject: CSCGPII DIARY SUPPLEMENT PROFILE

The following is a quick background of my fight with this cancer. Prior to ACC: Had appendectomy in high school. Mid 30's I had heart attack (2 on scale to 10) caused by overwork. Nothing heart related since. Fall '90 Right side of face lost nerve function. I noticed because I could not blink right eye. DX'ed, Bells Palsy by GP & neurosurgeon. Jan '92 After no improvement of symptoms an MRI & facial nerve test performed. DX'ed ACC of the parotid gland. Feb '93 Total parotidectomy w/ radical neck dissection & lymph node biopsy (clean). Jun '93 Full course post-op radial therapy. to 200cGY/fraction, 30 fractions, total Jul '93 6000cGY over 43 days. Apr '95 MRI shows 2 isolated recurrences at extra cranial origin of jugular foramen. May to solicited treatment options since my Jun'95 quack (more below) 1st surgeon couldn't do (saved me from telling him) operation. Chose a doctor to do procedure. Aug '95 Surgical resection of jugular foremen yes"> lesion & muscle skin w/ facial nerve yes"> grafts & eyelid repair. Feb '99 Ear canal closure & loss of hearing. May '99 DX'ed bone spur & cleaning of canal restored hearing. May '99 2nd DX of bone spur & leave alone because it would grow back if removed but hearing loss returned (this DX was by 1st surgeon & his associate)(quack it is). Aug '99 Tumor return and MRI confirmed 3CM tumor from carotid into ear canal. Aug '99 Pre-op CT scan reveals mets in lungs & liver. Operation to remove tumor & right yes"> ear cancelled. Mets are small cystic anomalies. Follow up 4 months. Sep '99 Tumor options & MRI to position and see if radiation feasible. Oct '99 Stereo-tactic high dose radiation to try neck tumor shrinkage. Dec '99 One tumor in liver now grown to 3CM. Rest unchanged. Recommends chemo (taxol). I take under advisement. Feb '00 Hearing has returned and MRI confirms shrinkage in the neck tumor. 4 month check-ups since shrinkage can continue for up to a year. Feb '00 CT shows liver tumor now 4CM. Find 2 cases of chemo working on ACC and decide to go whole hog. Surgery and Radiation of large tumor are options after chemo. Mar '00 CT shows liver tumor now 6.9cm. Take 1st round of Docetaxel(taxotere) 3/17/00.

Date: Wed Mar 29, 2000 2:33 am
Subject: CSCGPII DIARY TUESDAY MARCH 28TH

An hour more sleep today. Lasted to 6am. Crossword done in 25 minutes and no trip to Cancer Center for shot or blood work so the day is off to a great start. Rash almost gone but since there is no more itch, who cares. Spend the day getting things ready for the trip to Cleveland. That included loading about 1200 lbs of stuff into a 5x10 trailer (another 1200 tomorrow with Lisa's luggage). My concession to chemo was that I ordered union labor to unload and load it at the show. Cheaper if ordered in advance but if I knew I would feel this good then, I would not have done it. Food taste was also up today. I would say 90%, back, so it was not a chore to eat. So good, in fact, I wanted to use pepper at dinner, but hold off till tomorrow. I will be working till next Monday afternoon so there will be a diary delay.