January 1, 2007
.........PREAMBLE Come 1/8/07 (my next Dr. Hausdorff appointment) I will find out what has been going on since 10/02/06 when I went off all cancer treatment. This, after four cycles of Taxotere 30mg/M2, Decadron 8mg 3 wks on 1 wk off. When I stopped, my PSA had fallen from 9.86 to 0.86 and my CEA was down from 38. to 11.4. After six weeks the PSA had hopped back up to 3.64 and the CEA was flat at 11.4. An upcoming CT scan on January 2nd and blood numbers taken on 12/29/06, will tell the tale on January 8th when we look into the crystal ball like a gypsy fortune-teller
........One thing I do know is that when I go back on Taxotere I will keep my fingers in Elasto Gel Therapy Mittens. I have lost a number of fingernails which wouldn't have happened had I known about this French study. http://www.cancer.gov/clinicaltrials/results/frozen-glove0805. On my first go round with Taxotere 25mg/M2 every week (eighteen months) I suffered "pn" (peripheral neuropathy) and lost the feeling in my toes but no fingernail problems. So for the last four cycles I kept my feet and toes on ice pads during the infusion and the problem got no worse. I don't know why I can't find out about these helpful hints before the fact instead of learning the hard way. At the moment I feel fine. No fatigue as we move into 2007, and begin year Nine on March 4th.
........One negative note For me the Holidays are full of what I call "marker days." Thanksgiving, Christmas, New Years, the Super bowl, etc., and as someone with an incurable disease I can't seem to keep myself from speculating that this could be the last year I will be here to celebrate these events with my family and friends. And even though I realize that this is a foolish waste of energy that keeps me from being in the "here and now" I do it and am very displeased with myself for playing such a negative stupid game that has me missing the all the fun feeling queasy and a bit uneasy.
........I recall First Night Monterey, five years ago, when after I had finished doing my program a young fellow with his wife and family came forward and told me that they were from the Bay Area and had always been a fan of mine since hearing me speak on KGO in San Francisco every November with Jay Snyder and then John Hamilton. He bought a book and gave me his card. The following day I read in the paper where this same young man had drowned scuba-diving in the Monterey Bay. But when we are young and healthy "marker days" don't really exist and certainly don't carry the weight that they do at my age and in my condition. So this years New Year's Resolution will be to cut this pointless harmful "marker days" behavior out.
........See you next week after I find out what has happened to me in the 12 weeks I have been off of all PCa medications.
January 9, 2007
........Well, I really wasn't expecting miracles. And I didn't get one. During my 12 weeks of doing nothing, except watching my diet, my PSA jumped from 0.68 on 10/02/06 to 8.0 on 12/29/06. And in that same period the CEA jumped from 11.4 to 20.6. Therefore, I am going back to Low Dose DES 3 mg/day, Warfarin 2mg for 6 weeks. DES never drove my PSA down but it slowed the rise for almost 3 years. Of course if things keep climbing rapidly I'll return to Taxotere.
........Dr. Hausdorff told me about an upcoming new trial he will be involved in having something to do with an ingredient obtained from the sea sponge. I didn't have Ron my usual "onco roadie" with me to take notes. I went deaf, dumb and blind when I saw that both my PSA and CEA had doubled and April, my daughter, didn't write the information down either. It is something new and I have a call in to find out what Dr. Hausdorff was taking about. My friend Howard Hanson on the HRPC list gave me the web address below and this information: "Official Title: A Phase II Trial of E7389 (Halichondrin B Analog), in Patients With Metastatic Hormone Refractory Prostate Cancer. The NCI identifier is NCT00337077." http://www.cancer.gov/ncicancerbulletin/NCI_Cancer_Bulletin_081704/page4
.......I guess good news comes in strange packages. It sounds fishy to me - that's a joke son!
February 12, 2007.......
..........I see my oncologist a week from today, Feb. 19th. Dear Dr. Hausdorff has never put much store in the fact that six years ago I went on a vegan diet, except for ocean caught fish. No dairy of any kind, olive oil only, and of course no red meat or booze. I do consume lots of tomatoes, tomato paste, green tea, shiitake mushrooms, pomegranate juice. I take supplements, Calcium, Selenium, vitamin E, vitamin C, Garlic in tablet form and soy protein powder. Although I must admit that once in a great while I fall off the wagon and gobble up a piece of Camembert cheese and sip a very dry martini. I once asked Dr. John if I could have one martini a month with out screwing up my treatment. He considered my question a moment and then told me that keeping myself from having one martini a month would do me more harm than enjoying the forbidden drink. Even so, I'll bet Dr. John's brow will deeply furrow when I announce that, "Starting tomorrow morning, February 20th, with a six week interval till my next appointment, I am going to take a run at a product called Mannatech and the Glyconutrients found there in!" I realize it is a long long-shot, but you know what? If it works I'm a winner! And while I’m honestly giving it a try, In truth, I’ll be aggressively fighting cancer with Spiritude!, which can only help. Put poetically.....
...................................WITH WORDS & DEEDS
...................................in restaurants my grandson
...................................heads for the Men’s room
...................................the moment the waiter announces “My name is Ted.
...................................and I will be your server this evening.”
...................................Nathan knows what’s coming
...................................“Hi Ted, my name is Ric. I have “terminal” cancer
...................................and need you to work with me here
...................................to keep me from being too soon dead.”
...................................no dairy, no egg yokes, olive oil only
...................................tomatoes and ocean caught fish are OK
...................................etcetera, etcetera
...................................and though Nathan remains incredulous: “Grandpa!”
...................................I find that the Ted’s of the culinary world
...................................are only too happy to guide me
...................................through every entrée’s ingredients
...................................adding and subtracting
...................................until we come up with a perfect cancer fighter’s meal
...................................whether this bizarre conduct helps is not the point
...................................I strongly feel that by so doing
...................................I am aggressively addressing cancer
...................................plus it’s always fun to see the chef
...................................at the kitchen door peering into the candle lit gloom
...................................to see who is dying in his dining room
...................................certainly this is not the behavior
...................................of a passive cancer “survivor”
...................................It is the action of an assertive cancer “combatant”
...................................battling with a disease that even
...................................in this day and age can not be beat
...................................but with effort and attitude it can be held at bay
...................................for instance saying “chemo” without adding
...................................“therapy" is a dangerous practice
...................................“chemo” is a poisonous monster to be avoided at any cost
...................................while “chemoTHERAPY” can be a street to wellness and health
...................................so watch what you say
...................................and watch what you eat
...................................+++
..........If the Mannatech products turn out to be a pipe dream I’m only out a few bucks (quite a few in fact, but money is just metal and paper). Then again, if by some miraculous turn of events the stuff works and really does improve my health, all the better!
..........Actually now is the perfect time to "guinea pig" myself, because, at the moment, I’m feeling very well (no pain in the known bone mets and the nodules in the lung and lymph nodes are still quite small). So why not see if something like Mannatech might actually help. I don’t want to be like so many frightened cancer patients waiting till they have almost reached the end and then desperately clutching at straws willing to fly anywhere for odd ball treatments willing to try anything like apricot pits and god knows what other weird "eatments" this, when the battle is all but over. For more information on Mannatech 
So the dreaded numbers came in. The PSA 7.35 down from 8.00 on 12/29/06, which means that the DES 3mg is controlling the slow growing run-of-the-mill PCa. However, the CEA went up from 20.6 on taken on 12/29/07 to 35.3. So the aggressive neuroendocrine disease that in my particular case produces CEA is rapidly rising . Nevertheless, Dr. John and I decided I will keep doing Low Dose DES 3 mg/day, Warfarin 2mg, and start taking the Mannatech products tomorrow morning February 20th. Doc Hausdorff said that now is the time to experiment around while I'm feeling so good. I am due to have labs taken on 3/26/07 and a CT scan three or four days before I see the Dr. John for the six-week appointment on 04/02/07. Somehow, this evening it feels like I am about to embark on an exciting expedition into uncharted water. So keep your fingers crossed and......
PS.
..........A follow up tag to my use of the Mannatech products which I have been strictly following for the last 14 days when I began the regime. Some of you have written thinking I'm expecting Mannatech to cure my cancer. Far from it. I know that I will be going back on chemoTHERAPY (probably as soon as my next appointment with Dr. John, April 2nd) Happily, the DES 3mg/d plus Warfarin 2MG/d seems to be holding the PSA number down but as I also have neuroendocrine disease and the CEA is still climbing. But not to worry history tells me that it will knock the CEA number down again.
..........So what I can tell you about Mannatech is that after 15 days on the stuff I have more energy than I usually have. I feel almost euphoric. And that comes from a high energy kind of guy. Like I said I’m not looking for Mannatech to cure PCa. What I’m after is that when I go back on chemoTHERAPY Mannatech will help keep my white blood count up, strengthen my immune system and keep me from being as terribly fatigued as I got when I was on Taxotere the last two times. So baring some weird miracle my next go around with chemoTHERAPY will be better tolerated than the last two times that I have been on the nasty stuff. (Taxoter). And I can live my life (poetry readings, out on tour. etc.) and not be so tired that I have to cancel future engagements.
http://cosmos.bcst.yahoo.com/ver/230b/popup/index.php?cl=2866086
April 3, 2007
c..........Life can be as exciting as hell in the fast lane. First of all the Mannatech product has me feeling absolutely great, euphoric even. My friends all say that the sparkle is back in full force! Feeling good enough to go off DES & Warfrin starting yesterday evening 04/02.07
..........My lab report had my PSA down from 7.35 to 4.98, the CEA up from 35.3 to 37, and the PAP up from 0.7 to 2.9. But the CT scan showed a few more small nodules in my lungs the largest growing from about the size of the fingernail on my pinky to the size of my thumbnail. So it seems that in my case the blood lab work doesn't tell the whole story. Dr. John and I talked about three options. I could go back to low dose Taxotere that handled the nodules on my last go around and also continue DES as it obviously has been controlling the PSA. In the past Taxotere has handled my dedifferentiated neuroendocrine disease, knocking it down from a high of 898 to 5. Or I could try a different chemoTHERAPY much like Taxotere. (I forget it's name now, but it wasn't Taxol though much like it.) The other option was to try to get into a new phase 2 trial on E7389 (Halichondrin B Analogue).
..........Dr. John called last evening and told me that I met all the criteria for the trial except that I had to have a rising PSA, which I don't. So we are pulling me off DES for 8 weeks in hope that the PSA begins to rise again. Now ain't that a turn around, if there ever was one? For 8 years now I have been trying to keep my PSA down as low as possible and now here I am trying to get it to rise. If the PSA starts rising again during the four weeks off treatment I will be accepted into this new trial, which entails more CT scans, a bone scan, more blood work, and much closer monitoring
..........I like the idea because in place of the 1 hour Taxotere drip this new approach entails a five minute injection. Dr. Hausdorff asked if I would be willing to go off DES for four weeks (in other words take no treatment at all). I said sure. But before the good Doctor called the trial people he asked me if I would be willing to go off Mannatech if they demanded it. I said "No!" So the long and the short of it is: I will be doing nothing that addresses my PCa for four weeks. That is if the trial gives me permission to continue the Mannatech like I want to. And I do. If not it is back to Taxotere (lower dose this time. (Taxotere 25mg/M2, Decadron 4mg/3 wks-1wk off, and also continue DES 3 mg/day, Warfarin 2mg) So, here I am hoping to enter uncharted waters again, which is more than exciting. I like the feeling (probably Mannatech induced). If the E7389 B doesn't work for me I will then go back to DES which controls the run-of-the-mill PC and add low dose Taxotere 25mg/M2 to control the neuroendocrine disease. I go for labs on April 23rd having done nothing in the way of treatment. Then I'll see the doctor on May 4th. hoping that my PSA has risen and I can make the sponge trial. I have always been a gambler and the "well being" feeling that Mannatech is giving me says, "Roll the dice!
May 4, 2007
..........Yesterday, Friday afternoon, I went to see my medical oncologist to find out if my PSA, CEA & PAP numbers had risen during the last eight weeks of no prostate cancer treatment of any kind. They had!!! My PSA went up from 4.98 to 13.45, my CEA was up from 37.3 to 48.7 and the PAP up from 2.9 to 3.6. Believe me it is really weird hoping your numbers are rising when for the last eight and a half years we have diligently tried to keep driving the numbers down.
..........Happily, they all went up which makes me eligible to get into a new phase 2 trial on E7389 (Halichondrin B Analogue), the sea sponge alternative (made synthetically now) which I mentioned above. So after a few more scans (CT, Bone) and blood work I will begin the new protocol on May 21st.
..........I'm sure that I will have a lot more to say once I start this trial. For now you can go to the links for some information on what I'm in for. Dr. Hausdorff outlined the side effects that I might experience. Things like pn (peripheral neuropathy) loss of hair and perhaps some nausea. It is a five minute IV for two weeks and then one week off. Before the five minute IV they will give me about twenty minutes of steroids to handle side effects. It sounds much like Taxotere so I am going to keep my feet on ice packs and hands in frozen mittens a half hour before the injection and keep using the ice packs and mittens for a half an hour after the injection. Also we definitely are going to find out if Mannatech can keep my red and white blood cells normal and also help fight off the fatigue that is also listed as a potential side effect. I just got back from a six day tour in North Dakota -- 9 different gigs and I haven't felt this energetic since before I began my battle with the big "C" monster. Here are a couple of links that you can look over. But like I said as I get more into this new adventure I will become much more knowledgable and able to pass the information along to other interested parties!
http://clinicaltrials.gov/ct/show/NCT00365157;jsessionid=13BD75B6431371A04553607632E8C306?order=7
http://dtp.nci.nih.gov/timeline/flash/success_stories/s4_halichondrinb.htm
http://www.medicalnewstoday.com/medicalnews.php?newsid=34750
http://acs.confex.com/acs/56serm/techprogram/P12747.HTM
May 17, 2007
..................................TRIALS & TRIBULATIONS
..................................once again I feel the need
..................................to war with the medical establishment
..................................and the stupid words they tend to coin
..................................perhaps because I’m a candidate
..................................for a new cancer “trial”
..................................it seems
..................................a research team has located
..................................an ingredient in the sea sponge
..................................that causes cancer cells
..................................to turn around, wither and die
..................................so hopefully if I remain eligible
..................................I will soon be on
..................................the Sponge Bob Square Pants trail
..................................trail
..................................now isn’t that a more positive word
..................................than “trial”?
..................................“We tried but we failed.”
..................................somehow the word “fail” has insidiously
..................................coupled itself with “trial”
..................................in the fight for life
..................................language is most important
..................................therefore it’s time for trail
..................................to replace the word “trial”
..................................what a difference
..................................the juxtaposition of two letters make
..................................or how about path?
..................................at least a path always
..................................leads somewhere
..................................and trails are always worth following
..................................something not implied
..................................by the medical term “trial”
..................................so know that he, ol’ Sponge Bob
..................................will be on a more positive path
..................................going down a different trail for a while
..................................eager to see where it takes me
..................................+++
......... gave the above poem to the staff and nurses at Monterey Bay Oncology, who have all read it. Those of you that know me first hand are aware that I think the language we use has as much to do with survival as the medical course we take. So the other day at MBO by mistake I said "trial" and Andréa scolded me, "Don't you mean trail?"
.........May 17, Thursday after a week of scans, X-rays and blood work, Doctor Hausdorff was able to get me into the E7389 (Halichondrin B Analogue) trial, now known as the "Sponge Bob Trail." I had to sign a million papers containing phrases such as: "Although it is very rare there is a possibility that death could occur." Well, I suppose old Sponge Bob has to cover his ass in spite of the fact that he wears square pants. ..........As John left the room I was told to get ready as I would soon be visited by an angel. And sure enough Sue Lovecchio, MS, the Oncology Data Manager for CHOMP (the Community Hospital of the Monterey Peninsula) appeared in the examination room. Blond, shapely, wearing a white blouse and tight fitting tan slacks. Even a guy whose apricots have been pitted knows an angel when he sees one. She is a very nice person and who has been most helpful in readying me for the Sponge Bob trail, which I was supposed to start [driving/walking] down Monday May 21st. However, the next day there were messages on my answering machine that made me think of the line: "The best laid plans of sponge and man can often go astray." .
.........When I arrived home from a luncheon engagement the next day, there were two messages on my answering machine. One from Andréa, who does appointments, canceling Monday’s visit to Monterey Bay Oncology which was when I was supposed to start down the Sponge Bob trail. The second message was Doc Hausdorff explaining for five minutes the ins and outs of what was going on. It seems that the company that manufactures the Sponge Bob product has run out and won't have any available for anyone (even men who are already in the trial) for two more weeks.
..........Now this kind of information is not for the faint of heart. I have already been off all cancer fighting drugs for eight weeks trying to get my PSA to rise so that I could buddy up with ol' Sponge Bob, and it rose alright, doubling every four weeks. In just eight weeks it had risen from 4.98 to 20.5 and I'm told that I will have to wait until June 5th when MBO has been promised the product. .
..........John told me that I could go back to Taxotere if I really wanted to but I'm going to hang in for the next couple of weeks. The Mannatech products have me feeling fine. But one does wonder how the reputable group that is running this trial could come up empty. Jeeze! Fortunately I always say, live dangerously. So I will continue walking on the edge, as it is anything but dull and certainly keeps life interesting and sharp
June 6, 2007
..........I believe it was Shakespeare who said: "Troubles come not single spies but in battalions." First, the Sponge Bob product (Phase 2 trial on E7389 (Halichondrin B Analogue) was unavailable until Monday June 4th. Which had me off of all PC medications for 10 weeks with my PSA rising rapidly. Then my urologist found a lump inside near the tip of my penis. He tried the stretch routine which has helped for years but this time fixed so I couldn't urinate at all and had to ware a catheter for five days. It came out the same day I started Sponge Bob. I can feel the lump and it is still difficult to pee but at least I can. When things calm down Tony Shaheen, my urologist with take a biopsy of the lump. So I have that to look forward to. I asked him if he had ever heard of cancer in the penis. He said that he had never experienced such a thing but had heard that it was possible.
..........At least there were absolutely no side effects to my first 5 minute Sponge Bob drip. When you have been used to 20 minutes of Decadron and then an hour IV of Taxotere. Sponge Bob is a breeze. I do have to see the doctor before each Sponge Bob drip. And Doctor Hausdorff is always tardy. But I have got used to that. I will be looking for some results from this new protocol and will post again as soon as I have something to report.
Saturday June 30, 2007
........A lot of you have written wanting to know how things are going on the Sponge Bob trail (Phase 2 trial on E7389 (Halichondrin B Analogue). The simple answer is queasy, queasy, queasy, retch, retch, retch, nausea, nausea, nausea, vomit, vomit, vomit!!!!
........I guess being on an an untraveled path is always a crap shoot, especially when it comes to the side effects. Sponge Bob has this odd nausea side effect, at least for me. Though it is only a 5 minute infusion, it seems that 5 to 6 days out around 2 AM in the morning nausea arrives, wakes me up and fools around with me the rest of the night. When I was on Taxotere off and on for two years I did suffer pn (peripheral neuropathy) the lost the feeling in my toes, lost both my thumbnails, beard and hair. But never nausea which is far worse than any of those other Taxotere side effects.
........I have learned that there is another local guy who is also doing Sponge Bob but no one at Monterey Bay Oncology will tell me who he is. I suppose to keep us from influencing each other. That is a trail "no no" but I did find out that he too is having some nausea side effects but not as severe as mine. Not long ago I got an email from a fellow in Britain who had done 14 cycles of Sponge Bob and he warned me about the delayed nausea side effect. Probably his message wrote the script and set the stage for my Sponge Bob reaction.
........I had to spend 6 hours last Friday at CHOMP (Community Hospital of the Monterey Peninsula.) surprisingly in the middle of my second week off. They pumped me full of some anti nausea medicine (Zofran) and gave me a prescription for it in pill form but when I went to get the prescription filled at Longs Drugs I found out my Humana drug plan wouldn't cover it and it cost over $600. Way out of this retched :o) poets league. However one of the nurses at Monterey Bay Oncology who has become a close personal friend loaded me up with 10 boxes of Kytril. 2 taps in each box to be used over a 24 hour period. Also I was given a week off last Monday to try and get my tummy back in shape. The shamans of the Sponge Bob trial said that to skip a week was OK. I have a couple of poetry readings in Petaluma this coming weekend so this is just fine with me.
........At least now I have a plan when I visit Sponge Bob again beginning cycle 2 next Monday, July 2nd.
........1. We have raised the head of the bed 3 inches on blocks in case there is any acid reflux going on. I don't think so but I'm 3 inches taller when I lay on my back.
........2. I will start taking the Kytril. (granisetron HCI/1mg) Friday morning before the big black nausea train historically arrives in my station!
........3. Eat a good breakfast and lunch but not much and real bland for an early dinner on the target days. I also have quit taking Mannatech until I get on top of the sea sickness. Then I will add the Mannatech products back in one week at a time.
........No doubt the next question is, "Well is Sponge Bob controlling your PCa? I've learned that when you are sick at your stomach one doesn't much care it it is working or not. But I can tell you this. I did get my PSA to rise over two months which was a must to get into Sponge Bob. Over the nine weeks of doing absolutely nothing about the PCa my PSA rose from 4.98 on 03/26/07 to 20.28 on 05/14/07 the day I also had a CT scan, chest x-ray, and Labs, So I was ready to start off on down the Sponge Bob path on Monday 05/21/07. But for some reason the Sponge Bob boys didn't have the product to ship. Evidently 4 trials all started around the country at the same time and the company was simply caught short for two weeks. Which certainly didn't fill one with confidence. I had to wait two more weeks doing nothing that addressed the PCa which would have been a time of fingernail biting that is if years of Taxotere had left me any fingernails to bite. Obviously at the rate my PSA was rising it must have gone up since the base line draws on 05/14/07. At long last on 06/04/07 I had my blood drawn and my first infusion. But somebody forgot to do a PSA that day. Dr. John was furious at the folks at CHOMP who did the blood draw. So I really don't know how high my PSA was the day I started ol' Square Pants. We did a PSA the 2nd week 06/11/07 and it came in at 20.02. This a little lower the the supposed base line of 20.28, This says to me that it is working because I know my PSA was rising during that unexpected two week wait.
........They make the first real assessment after 3 cycles. But I have to beat the dragon that visits my stomach Friday or Saturday evening. Fighting the big PC monster ain't for the faint of heart. We will just have to wait till after the 3rd cycle is finished to see the effectiveness of this new protocol.
July 10, 2007
........As (Phase 2 trial on E7389 (Halichondrin B Analogue) is the first trail (don't like the word trial) I have been down. When it came to Sponge Bob we enter pretty much like a virgin not knowing what to expect. The doctor and oncology nurses don't really know what to expect either. So I learned on my first two go rounds which are on Monday morning that nausea rolls in like a big black train Friday night, actually 2 AM Saturday morning. The nausea is gone by Sunday morning.
........Knowing this last week when I started the second cycle this time on Friday after dinner I took Kytril 1mg., another Saturday morning and Saturday evening. No nausea at all. Hooray! As I write this I am on the 2nd leg of 2 weeks on 1 week off and plan to do what I did last week. Dr. John is doing a PSA this week and after the 3rd cycle I must take another CT scan, bone scan, chest x-ray and blood panel. I have discovered that when you head down a new trail they really keep track of your progress.
........We discovered that Sponge Bob is making me a bit anemic so Procrit was added to the mix this week. Also learned that dried apricots, prunes and walnuts help boost the red blood cell count. These are the treats now when Ricky is a good boy.
July 16, 2007
........Hooray!!! I found out today that old Sponge Bob Square Pants (Phase 2 trial on E7389) in one week, starting 07/02/07 knocked my PSA down from 26.73 to 18.03 on 07/09/07 and as far as I'm concerned a drop of 8.7 in one week ain't bad. As I said above we have the nausea thing figured out and under control now. And the fact that in my case at least, Sponge Bob makes me anemic, so each week I will be getting a shot of Procrit. I quit taking the Mannatech product because of the two weeks of nausea but have added it back in into the mix, but only in the morning. When one starts down a trail that so few have traveled none of us including the doctors really knows what is just around the bend. But with my PSA load 8.7 lighter at this point I'm glad to be a pioneer.
August 14, 2007
........I fully realize what they mean when they say, “We are going through a rough patch!” In the middle of the night on August 4th my wife, Billie Barbara fell on her way to the bathroom and broke both her right hip and her right wrist. The top of her femur had to be replaced and she has a cast on her right arm, which makes using a walker a problem. She is making good progress though and is getting around Westland House (rehab) quite well with a four-footed cane. So this is the background against which I went to my oncologist, John Hausdorff yesterday, 8/13/07 to see where the Sponge Bob trail [Phase 2 trial on E7389 (Halichondrin B Analogue)] was leading me. We would do this by comparing recent labs, Bone & CT scans with labs and scans done eight weeks ago when I started down the Square Pants trail.
........After about an hour comparing the scans, the good doctor said that it was really "a wash." Some of the mets in my lungs were larger and about an equal number of mets were smaller. The bone scan did not show any new mets but the known mets seemed to be more active, which I found out from Dr. John sometimes happens when someone in my condition uses Zomeda, which I do. The PSA and CEA were both down about five ticks, which was good.
........Then I showed him the hard lump that has developed on the right side, at the head of my penis in the last six weeks. It is now about the size of the tip on my little finger. And makes the stream rather thin when I urinate. So Hausdorff called my urologist Tony Shaheen who will do biopsy and cystoscopy (clear the channel). These are out patient procedures that he’ll do at CHOMP, the local hospital, as he will need to anesthetize me.
........If the biopsy is negative I can go back to Sponge Bob if I want; if it is malignant it will be back to Taxotere, which was working when I last went off it. Hausdorff told me that surgery was out of the question and since the bilateral orchiectomy my penis is so small that radiation is also out of the question. The worst part is that I’m going to have to wait till Wednesday, August the 22nd at 2:30 PM for the procedure and results, a long wait for a nervous Nellie like me.
........Every Tuesday I have coffee with a bunch of local cartoonists, poets, and writers. So I left Westland House where Billie Barbara’s rehab is taking place for the usual 11 till noon get together. It is called “Toonsday,” as a bunch of well known cartoonists started the event about ten years ago (Hank Ketchem, Eldon Dedini, Gus Arriola to name a few) and this caregiver did need a break from all of the above. However today Carmel was having a Classic Car Show down its main street so I parked in a green space a block over from Ocean Avenue and hung my blue handicap placard on the mirror. When I returned from "Toonsday" I discovered my car had been towed away. I had to walk ten blocks to the Carmel Police Station and pay $90, and then go to the gas station that towed the car and pay another $122.50. I figure today’s cup of coffee cost me $212.50. Like I said at the start of this “We are going through a rough patch.”
........I will let you know how the biopsy comes out and what treatment I will be continuing on as soon as I know myself.
PS Last night August 22nd I had an almost impossible time urinating. So I went in to my urologist, Tony Shaheen who had a hell of a time inserting a catheter because of all the scar tissue or cancer mets inside the urinary tract. Tony said he had never encountered anything like this before. After about a half an hour with the smallest catheter he had, Tony managed to get it installed. But he told me that the urinary channel was so blocked up that he couldn't get the tools needed to do cystoscopy. So after he takes a biopsy of the hard lump at the had of my penis he will then punch in a suprapubic tube from the outside and for the rest of my life I will be peeing through this contraption. First a urologist took my balls and now one is rendering my penis irrelevant. In the right light it is funny and I am I'm trying to keep a sense of humor about the upcoming episode.
August
.......Well, Monday 8/27/07 with the urologist was one of those DAYS. The Suprapubic tube I had installed 8/22/07 quit working Saturday and on Sunday morning I had to go to emergency at the hospital. They tried, but they just couldn't flush it open, so they installed a regular catheter and I left the hospital with two tubes running out of me. Without my pants I looked like a gunslinger with a holster on each leg. This morning my urologist tried to get the Suprapubic to work, but to no avail. So I may be toting a urinating catheter for the rest of my life.
.......The worst news of course is that the mysterious lumps in my penis, which neither my oncologist and urologist had ever seen before, are cancerous, which means tomorrow morning at 9:00 AM I leave the Sponge Bob trail and go back on down the Taxotere path. (Taxotere 30mg/M2, Decadron 8mg -- 3 wks on, 1 wk off) It was working when last I went off it.
.......In technical talk the biopsy report put it this way:
"Given the tumor morphology and the patient's history of prostatic adenocarcinoma Gleason Grade 4+4 (599-1916), the findings are most suggestive of metastatic adenocarcinoma.”
.......This morning 8/29/07 I had to have the Suprapubic tube removed being as it wasn't working and my oncologist wanted it gone. The site where it enters the bladder could be a source of infection, something I need to look out for as antibiotics cause chemoTHERAPY to stop working.
.......August was a month I could have done without. First my wife falls and breaks her hip and wrist. Then I have to be catheterized because I couldn't pee. Then I had to go under anesthesia for the biopsy and Suprapubic Tube installation. After which, for three days, I had terribly painful bladder spasms and in the end the damn thing didn't work anyway.
........When I was having the Suprapubic tube removed the urologist mentioned that my bladder was quite small and the wall of the bladder was keeping the fluids from draining out. I must admit all this has made me feel pretty low down. Still I found it kind of funny when I went into the bank on the way home and a friend of mine slaps me on the back and shouts: "Ric, you look great!" I just said "thanks" and went to the teller's window.
........All of this is in keeping with my battle with PC. First I found out that my disease didn't produce much PSA but lots of CEA. Now I discover that I have a tiny bladder and have developed tumors in my penis. I guess I will do anything to be different. I am sorry that the Sponge Bob trail didn't lead anywhere though. It was fun while it lasted (especially the 5 minute IV). Helpline Harry sent me this abstract, so be on the look out. Tumors in the penis ain't impossible.
http://www.ncbi.nlm.nih.gov/sites/entrez?
db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=17430269&query_hl=1&itool=pubmed_DocSum
........So we will have to wait some more to find out if the Taxotere will do it's job for the third time. My next appointment with doctor John is 9/17/07
September 17, 2007
........When my oncologist walked in to the examination room he said, "Well, you look a lot better than you did the last time I saw you." In fact when I went to my Tuesday coffee "get together," known as "Toonsday" all the fellows said the same thing: "You looked like you were ready to cash it in." Of course I was in deep fatigue having come off Sponge Bob and having the suprapubic tube operation fail and starting Taxotere again. But this week I'm on the Taxotere's first cycle week off and I feel like my old self again. Yaba daba do!
........On Sunday, Sept. 9th I woke up with my catheter night bag full of a deep red burgundy (blood) and was told to go immediately to emergency at CHOMP the local hospital. It took 5 hours before I saw a doctor however and by then my pee was the color of a nice rosé. By bedtime it was a pale lager beer. All the five hours in the emergency ward produced was some antibiotics. Off and on I see rosé but mostly lager since that trip to the hospital.
........The worst thing about having to use a catheter is that it is a constant reminder that I have incurable cancer. Dr. Hausdorff looked at the mets in my penis and found them no larger, so hopefully the Taxotere may reduce them in size and free up my urinary tract. I need to quit whining about the catheter I have a good friend who has been pooping in a bag and living a full and rich life. Way to go Lee!
........We had no new PSA number to compare with the one taken when I resumed Taxotere. Hausdorff wanted to give Taxotere some time before I got all excited about the numbers not going down immediately. He knows me pretty well. So I will get the 2nd PSA drawn on the third leg of cycle 2 10/08/07.
October 12, 2007.......
........With almost everything there is always some "Good News" and "Bad News"
The "Good News" is that for the third time in eight years Taxotere seems to be working once again. Driving my PSA from 31.01 down to 14.03. This after only one cycle. So at least the early results are most positive.
.......The "Bad News" is that I forgot how fatigued this chemoTHERAPY regiment makes me. There have been times in the past that I had to cancel tours, gigs and weddings. So yesterday I canceled three engagements not knowing how I was going to be feeling down the road energy wise. I'm also passing the pespective weddings along to a friend of mine. I have three more cycles scheduled (3 wks on, 1wk off) Hausdorff and I will see how the numbers are December 10th. Hopefully we can get the PSA under 1. once again On 10/02/06 my PSA was 0.86 after which I went on Low Dose DES 3 mg/day, Warfarin 2mg. And although it is expensive I will go back to the Mannatech product as it gave me a great deal of energy until I had to quit taking it because of nausea when I started down the Sponge Bob trail. With hind sight Sponge Bob was a bad mistake.
November 9, 2007.
........While the main battle with the big "PC" monster is ongoing, let me tell you, it is the bumpy side streets, the peripheral skirmishes, that can really do you in.
........As you know I have been forced to use a catheter because the PCa has invaded my penis and blocked my urinary tract. The instalation of a Suprapubic tube didn't work be cause of cancer surounding my bladder and so I am doomed to wear a catheter from here on out. I don't like this but I’m trying to take it in stride. However, I wasn't prepared for the blood clot issue. One morning about three weeks ago, I woke up to my urinary bag (brand name Bard which seems fitting) full of liquid the color of Pinot Noir wine, perhaps even as dark as Cahors red wine. So my friend Owen Greenan took me to the emergency ward where we waited for five hours before we could see an ER doctor. By the time he saw me, my urine had turned the color of a delicate rosé. So after conferring on the phone with my urologist he sent me home with some antibiotics. By bedtime my urine was the color of a light Chablis.
........Now fast forward to Tuesday, October 30th, when nothing was draining into the bag, so it was back to the ER. This time it was blood clots that were stopping up the Foley (the tube that goes into the bladder to which the drainage bag is connected). The nurse tried to irrigate the blood clots out. Despite flushing out many, many clots, I was still not draining so it was decided that I should stay in the hospital until the problem was resolved. For four days, three shifts of nurses each day (wonderful beautiful caring people) grabbed my Johnson and irrigated my bladder (I don't even remember what modesty feels like) by forcing a saline fluid up the Foley and into the bladder and then trying to suck the liquid back out and with it, hopefully, the culprits (blood clots) that were shutting things down. Sometimes it did work, and I felt relief for a while, and sometimes it didn't, and I felt terrible pain. When the nurses forced in the saline solution the spasm of pain was such that I thought I was having a baby. I mean, far and away, four of the six days I have just been through were the most painful I have experienced in my life. Vicodin and morphine did not help a bit. Finally, at three in the morning on Thursday, November 1st, my urologist Tony Shaheen decided to go into my bladder, and did so at around 4:30 AM. When I woke up the pain was gone and when I saw Tony later that morning I asked how many blood clots there had been. He cupped his hands and held them together, "About half a quart," he said. He also discovered a number of bleeders and cauterized them. Both Tony and Dr. John my oncologist wanted me to stay in the hospital until Tuesday. During that time I had six blood transfusions as my red blood cel count was very low. The last three days found my urine running clear and clean.
........Delighted to go home, I was swept back into fear and despair on Wednesday, the day after I returned home when the bleeding returned. I passed eleven blood clots that looked like black baby eels, pollywogs with long tails. Perhaps even a menacing sperm come back to punish me for having my apricots pitted. Yesterday, was better. I just showed blood twice but only for a short time. This morning, so far, only one blood clot.
........What I have discovered is that when I sit on a chair the pressure where the Foley is starts the bleeding. So yesterday my daughter Jerri rigged up a couple of chairs so that my genitals, or what is left of them, rest on nothing but air. Edema had filled my empty scrotum with liquid until I was hung like a prize Brahma bull and the pressure caused the irritation (now I understand why cowboys walk bowlegged). The swelling is going down, thankfully, but I must say that last week, lost and afraid on an unknown side street, was the worst week of my life.
........Next Monday it is back to the real war chemoTHERAPY (Taxotere) but I must admit that I will be keeping an eye on the Bard bags praying that I don’t have to get stuck in the blood clot cul-de-sac again. Also, I am back on two Mannatech products ambrotose AO (1 cap morning - one cap night), Advanced ambrotose (3 teaspoons per day)
November 19, 2007
……….Saw Doctor Hausdorff, my onco, yesterday before beginning the forth cycle of Taxotere 30mg/m2, Decadron 8mg -- 3 wks on,1 wk off. I never finished the 3rd cycle what with all that blood clot business and Seven days in the hospital. Looking over recent labs we discovered my PSA went up from PSA 13.39 on 10/19/07 to 19.23 on 11/12/07. So we don't really know if after 9 and a half years the PCa has found a way around Taxotere and I will be looking for another alternative. We will take a blood sample on 12/10/07 and decide then if Taxotere has run its course.
……….What is interesting to me is how good I feel even with the PSA bad news. Up until recently I had been waking with anxiety each morning and it wouldn't lift until about 4 in the afternoon. But when I came home from the hospital (thank heaven for Medicare & AARP) I felt renewed. Probably it was the 6 blood transfusions I had there at the end of my hospital stay. Anyway, I immediately rebooked three gigs I had canceled during that anxiety period. So I will be performing at FIRST NIGHT MONTEREY, and at the Unitarian church service and an afternoon gig on January 20th promoting a biography that Steve Edington from Nashua New Hampshire has done on me. Steve did two books on Jack Kerouac so I am in good company. Later in April I will do a workshop and be the banquet speaker for a Poetry Convention in Ontario down in Southern California.
……….As you can see I'm just bursting with energy. I also did start some of the Mannatech products again the day after I got home from the hospital (ambrotose AO (1 cap morning - one cap night), Advanced ambrotose (three 3 teaspoons per day), and PhytoMatrix (one in evening). Also decided to bring out my WORDS & ONE-LINERS - TAKE 3 book, which I had put on the back burner. It is almost ready for the printers. I have no idea where all this energy is coming from but it feels good to be back in the saddle again. Well, more like back on the catheter bag, brand name Bard which fits me to a tee) again, riding the Foley like the trooper that I am.
December 14th, 2007
...........I met with Dr. John at 3:40 (Well, he was an hour late) on December 14th. We reviewed the lab work done on December 3rd. PSA 15.15, CEA 24.7, PAP 7.7 Not as dramatic a drop as I would have liked but the PSA was down and the CEA was flat but the PAP was up to 7.2 which usually indicates activity in the bone mets, so it was decided that I would continue with the Taxotere 30mg/m2, Decadron 8mg -- 3 wks on,1 wk off for another cycle and two thirds. Christmas interrupting the third leg of the forth cycle. So it's back to the grindstone on New Years Eve morning. That evening I will be doing two presentations for FIRST NIGHT MONTEREY at the Maritime Museum just off the plaza. Show times are 6:15 - 6: 45, 7:00 - 7:30. I ought to be all fired up as the 8 mgs of Decadron will have me talking fast and feeling exuberant!
...........The best thing that has happened since my last posting is that I finally got on top of the bladder blood clots. Nurse Vivian at the HOUSE OF DRIPS had me get a bunch of Cath-Secure gizmos which holds the Foley against my leg and keeps the part that enters the penis to my bladder from moving around which has been causing all the bleeding.
...........I haven't seen the deep Burgundy color for over two weeks now just a little rosé now and again which will be followed with a single red colored blood clot floating in Bud Light, So as a gunslinger I'm ready to take on the world.
...........My HRPC list friends have many suggestions to try once Taxotere all by itself no longer works in my case. Which means I am going to have to call on SPIRITUDE to carry the battle on. Keep a positive spirit goes without saying but because Dr. Hausdorff shook his head over some of the suggestions that the moderator of the HRPC list sent me. The 2nd part of the word SPRIITUDE means that I'm going to haul out and clobber Dr. John with what I want to do exercising ATTITUDE with the good doctor. In the end John always lets me do what I want to do.
...........Next labs on January 21, 2008. Next meeting with Doctor Hausdorff on January 28th.
...................................A WORD FOR SURVIVAL
...................................(Dedicated to William Hoyt Jr.)
...................................© ric masten
...................................The man who coined the word
...................................Had a terminal disease
...................................A realist who knew that language
...................................Strengthens, heals and frees
...................................Fear the silent assassin
...................................Will bring you to your knees
...................................While faith can pull Excalibur
...................................From stubborn stones with ease
...................................The outcome of any illness
...................................Is never absolute
...................................No matter what the odds are
...................................The end is always moot
...................................It’s only in uncertainty
...................................That true hope can be found
...................................And you can bet a sure thing
...................................Will always let you down
...................................He fought the “Big C” monster
...................................With spunk an attitude
...................................Another cock-eyed optimist
...................................You should not conclude
...................................So like the fallen colors
...................................I’ve taken up his word
...................................I’ll shout it from the hill tops
...................................Till the echo can be heard
...................................He was no Pollyanna
...................................His word no platitude
...................................To things considered saccharine
...................................He was abrupt and rude
...................................In the present day vernacular
...................................He was a righteous dude
...................................Let’s hear it for the man
...................................Who coined the word
...................................Spiritude!
...................................+++
..........Stay tuned