I am starting Chemo with Taxoteal tomorrow, with infusions every three to four weeks
are you Chemo guys finding it tolerable or are you having a real bad time,
I know it ain't no bed of roses but I am just trying to find out how rough of a road am I in for? it feels like the end of the road for me and I am scared and mentally numb
I think we try it for about two or three sessions to see if it works then if it works we keep it up for about six months and stop, then what happens I don't know.
thank you guys
jack
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MrJack
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Wow, Years ? , hey that sounds pretty good, another five good years is all I'm asking, that's not too much.
thank you
snap
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I have to add, I don't think I was classed as "high volume" as defined in the study, so I was not in the category of people directly studied by Chaarted. Suggestive. But my reaction to the chemo was mostly fatigue, as I recall.
If I were to advise myself now, looking back, I would look for trials right away. There are some trials aimed a newly diagnosed and untreated patients. Some of these might be better. At least examine them and make the decision.
my onc doc wont let me do a trial until we have exhausted all "standard" treatments, including two chemo drugs, and possibly revisit some older or already tried drugs, then we can start doing trials, so I don't know what I can take I will be pretty beat up by then,
NCCN guidelines say consider a trial at every stage. A trial is always appropriate. Trials are aimed for patients in every different spot in the treatment pathway, including "untreated so far".
Each trial specifies the intended target population.
Have had 12 infusions has controlled psa but if i have a break psa goes back up side effects are ok except for fatigue so you should try it out because it does work
My only side effects through 13 cycles of docetaxel (taxotare) was an extremely low white blood cell count during the first cycle (neutropenia). That problem was resolved with Neulasta during each subsequent cycle. After a 12 week try with cabazitaxel (Jetvana), I am now in a research study which uses docetaxel along with Carboplatin chemos as well as rapamycin which may reinforce their effectiveness. The first cycle was marginally tougher than previous, but certainly not bad. I know I am lucky to tolerate these drugs so well, but it is important for you to know that we all react differently. I wish you the best in this horrible journey we are all taking!
MY experience: please remember each pt's experiences will be uniquely different in intensity
1. BACKGROUND
75 yo male physician
Stage IV,Gleason 9
No pre-existing cardiac or metabolic disease except gout
Began a strict vegan diet ~ 1-2 weeks prior
Started supplements curcumin,ground flax, B12,VitC
Carefully counted grams of protein and calories consumed every meal (pretty anal,huh?)
Vigorous PT workouts at my cancer hospital
2. TREATMENT
ADT : Fermagon (for 1st month then Lupron alone thereafter
Chemo: Taxotere every 3 weeks + prednisone 10mg daily + decadron 8mg (day before,day of day thereafter each infusion + Neulasta shot 24h after each infusion
notes :
prednisone and decadron May ameliorate,won't prevent side efffects of taxotere but prednisone by itself MAY make your diabetes worse or make you prediabetic (me),accelerate cataracts a bit (me)
ADT,WILL make your lipid profile worse (me)
Neulasta prevents your white blood cell count from dropping to a level where you become highly susceptible to fatal ibacterial nfection. Some oncologist (not all) do it routinely (me)
3.EFFECTs
Infusion cycle 1-3-piece of cake . 1-2 days feeling blah post tnfusion then back to normal. My strength was measureably increasing during this period due to vigorous exercise. my hemoglobin A1C and fasting blood sugar got into prediabetes stage.. Lipid profile became worse. Numbnes in tiny area of tips of several fingers of both hands (peripheral neuropathy)
Infusion cycle #4. Suddenly feeling blah got worse,couldn't work out as strenuously or as frquently for two weeks then back to normal for the ~7 days before cycle # 5 came up.
Infusuion cycle # 5-6: aged me 20 years. Thought I was going into congestive heart failure (severly decreased exercise capacity,marked increase in heart rate with minimal exertion.sever peripheral edema). Marked muscular weakness.significant increase in peripheral neuropathy.. Skin changes -lost my fingerprints. NOT KIDDING-this has been noted in the literature but rarely mentioned
4. AFTERMATH:
6 weeks after 6th and final cycle,PSA down to 0.10. Thanks to strict vegan diet metabolic profile showed no prediabetes and superb lipid profile. My oncologist never recommended metformin or a statin though I questioned him about it. Also sneered in the beginning about the vegan diet I had put myself on.
Was still feeling like crap,legs always feeling like I was walking up a steep grade. Then I noticed I hadn't LOST any weight DESPITE 2-3 months greatly decreased intake. Being a reasonably adequate physician,I figured out the edema ,shortness of breath,& unchanged weight HAD to be severe fluid retention (very common complication of taxotere).
Put myself on daily diuretics (despite my oncologist telling me diuretics don't work for taxotere-caused fluid retention). Three weeks and 12-15 pounds later felt like a new man. Exercise capacity increasing,no longer marked increase in heart rate with minimal exertion ,progressive increase in weight lifting ability Now I know some of it was due to some of the toxicity of taxotere wearing off but I feel that FLUID RETENTION can be a SEVERE COMPLICATION.in some patients. Weakness,and lack of activity begets further weakness and lack of activity and has very dire consequences. I kew this & there was nothing I could do about it until I took it into my own hands.
I also felt at this point I could not depend on my oncologist to do anything other than write the order for the infusions & ADT. It's NOT that he is incompetent. It's just that he only knows how to take ACUTE care of cancer patientsor or ASSUMES the pt's primary care doc will take care of the slowly developing cardiac and metabolic complications. As a retired specialist myself,I know that is a faulty assumption.
5.CONCLUSION (TO MY RANT)
I hope you are under the care of an oncologist who restricts his practice to prostate oncologist or at least GU oncology (me). If the latter,TRY to at least get a consultation with a strictly prostate only oncologist somewhere (I did this)--cross state lines if you can afford it.
Learn as much as you can about your disease and treatments and their side effects. Dr Snuffy Myers and Dr Strum's books are good single sources in addition to this forum
TAKE THE RESPONSIBILITY OF ADVOCATING FOR YOURSELF-nobody else will. There is no "stupid" question when it's YOUR life and quality of life that matters
I hope your oncologist and/or your primary care doc in turn will TAKE RESPONSIBILITY to take care of YOU,the whole patient and have the basic clinical smarts and experience to do this well.
Lastly,if you skip over my wholly idiosyncratic experience keep in mind,if I survived and susequently thrived chemo at 75 y.o,YOU (whom I believe are younger) CAN DO IT TOO.
Thanks Pat, I really like your approach to the situation, it sounds like you handled it the best possible way, I will take what you say in heed and learn from what you said,
I am just into my 1st cycle, so I will buckle up for the upcoming cycles
I will watch my diet and try to stay active and mentally positive
thanks for all the information and detail.
I am 58, Gleason was 4+3 now with bone mets. etc, I had robotic radical prostatectomy
I had a good five year run on ADT /HT, now doing chemo.
I never felt better than when I was getting Chemo. Very little pain, no feeling the blahs like with the expensive ADT's. Got 3 then they took me off probably insurance problems I will now have 3 Radium 223 treatments before I go back,
Take that claim of years of chemo benefit with a tub of salt. The median benefit is more like 10 months.
Regarding eating a "good diet" and achieving a "good lipids profile" ... which one (of each)? They are all over the map. Look how long it took the mainstream medical community to confess that they were wrong, that low-fat diets do not manage obesity (1996, IIRC)? Then look at the ensuing 20 years during which that word has STILL not reached mainstream physicians.
Don't even get me started on lipids. I have found only two physicians to this day who understand the difference between LDL A and LDL B, and one is "just" a nurse. The rest actually still believe that saturated fat promotes high (and thus bad) cholesterol and that high cholesterol causes cardiovascular disease.
I've read the study reports, and am now reading a pile of books on the benefits and side effects of chemotherapy, They scare the living crap out of me, but with PSA of 50 and a doubling time of 4 months, I have no choice about ADT, and little about chemo. Caveats:
• I will enter chemo next month with a written directive to take me off it if I stop thinking clearly. MANY chemo patients acquire what's called chemo brain, an Alzheimer's level of dementia. It may not resolve even after quitting chemo, and it can appear years after getting off chemo. I will not do that to myself or my wife. That's not life; it's just heartbeat, and many oncologists consider that successful treatment.
• Then there's the VERY common problem of constipation, which often gets to the level that it requires trips to the emergency room or even abdominal surgery. Many patients say their constipation is the worst aspect of having cancer!
• I've had insomnia for decades. Any little trigger, from a slightly warm flush or an ant tripping over a period on this page wakes me up, and that's often the end of my sleep that night. Our bodies MUST have sleep to heal and survive even when we're healthy; cancer or a cut on our finger needs extra, not less, sleep.
• I will be studying the research literature on early chemo (as opposed to waiting until ADT fails) very closely between now and taking that first taxotere pill. I will also monitor my medical and psychological responses to it (I don't have the liver or lung mets that offer a 17-month median benefit). If I find that my expected benefit is just 6 months and/or my SEs are NORMAL (as the books claim), I may drop chemo like a hot flash. What's the point of adding 6 months if they make me and my wife miserable?
Gotta run. My second consult with Compassionate Oncology (Dr. Bob Leibowitz's cutting edge PC clinic in Los Angeles) is approaching, and I have LOTS of preparation to do. Their appeal to me is that instead of poisoning us for the rest of our lives with ADT monotherapy (which TEACHES our cancer cells to become resistant ... i.e., deadly) plus wild chemo swings once a month, they pull out all the stops for 13 months of heavy duty triple androgen blockade, meter the chemo out more evenly with smaller weekly doses, and at 13 months STOP WITH THE POISONS. The goal is to hit the cancer with three barrels up front, then coast through the rest of our lives on MUCH less onerous drugs, maybe even on very high doses of testosterone and feeling like young men again rather than feeling like roadkill and thinking like fence posts until our ADT kills us. Leibowitz's published success rate and heights are unprecedented, and if his protocol fails me I can always revert to the Standard of Care Can of ADT + Can of Chemo. Better yet, his clinic is accustomed to administering its program through patients' local medical oncologists and is mostly covered by most insurance.
Your doctors' objection to his Three-Pronged Protocol (Google it) will be that it hasn't been proven to extend our lives by random controlled trials involving tens of thousands of patients. Umm ... NEITHER HAVE SURGERY OR RADIATION. In fact, Leibowitz has treated many PC pts with his program as a first-line treatment. I.E., no surgery, no radiation, no lifelong impotence or impotence (NOW they tell me). Besides, these same doctors claim that 1) saturated fat inherently leads to dangerous cholesterol levels 2) which in turn cause heart disease, yet hundreds of peer-reviewed studies from long before I was born right up to last month have shown that both of those claims are nonsense and that Leibowitz's 20-years-old PC treatment principles have merit.
Keep asking, keep reading, and keep questioning your doctors. They're just human, they're swamped, and they don't have the time (nor often the motivation) to keep up with the research.
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Others (Meyers?) also say that you should go for the knockoout blow, rather than a series of failures.
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