after 2 docetaxol, psa drops just a little

Had my third chemo yesterday, after 1 psa was up from 90 to 95 which was 60, 10 days before 1st chemo, so that slowed it down and now after 2 it is down to 88, we proceeded with my 3rd as as whites were good. 27 mm into it I had a allergic reaction face turned beet red and felt very nervous, the nurse always stays with me for the first 20 minutes in case this happens, she shut the iv immediately, and I started to come back, gave me a drip of benydryl, and a drip of hydrocortisone 25 minutes later we were back on docetaxol and it went fine. Wish the drop was more, but I am happy for all time given. I suspect soon I will be looking for a good clinical trials, any one have any good ideas on clinical trials, Thanks, Dan

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  • Thanks for the update Dan. I started Docetaxel 1 week ago also. I found it pretty brutal for the first 5 days, but the last 2 have been OK. The nurse also stayed with me at the start looking out for signs of an allergic reaction, but thankfully I didn't have one. Have you done any research about protecting your hands and feet from neuropathy? I've read that ice-cold water baths for hands and feet can prevent (or at least reduce) neuropathy which some people say starts months after the chemo infusions and can last forever (though most people seem to indicate that they get some relief over time).

  • Hi Dan,

    Adding to Paul's comments about using cold socks and gloves to protect against neuropathy, I also read somewhere that Docetaxel can damage (scar and block) tear ducts. The recommendation to help with this problem was flushing your eyes every ten or fifteen minutes during infusion with saline eye drops. I can't remember the source for this. Not yet having experienced chemo myself, I can only pass on what I recall reading. Clint

  • Clint , I had not heard of that. It is so good for you to be reading these post and to know what you can do to possibly alleviate side effects if you should ever need chemo, You are a wise man, see elastogloves for chemo. I have to tell you after all my fears of starting chemo, it is not so bad.The old timers from the HRPCA list had great pages on what to do for chemo side effects, sadly they are gone now, RIP I will try to post some of their papers when I get some time. Thanks for your reply, see my response to Paul.

    Dan

  • Are you guys taking the one-a-month 75 mg dose of Taxotere? That may be part of the problem. That's a huge dose, and some medical oncs are using three weekly doses of 25mg per month instead with excellent results. I'm about ready to start my second month of chemo at 3X25, and haven't yet noticed my chemo. It's simply been a pleasant, quiet three-hour segment of time to read more books, followed by a normal hectic day. Patients with symptoms often report feeling better the rest of the day, and even without symptoms many of us feel livelier afterwards. I fly to LA for my first 25 mg infusion (plus testing to titrate the 17-18 ADT and chemo meds I receive) each month, and find that the 7-8 hour airplane/airport journey home is a good time to finish that book. because I'm wide awake and feeling rejuvenated.

    My local medical oncologist admitted that he sometimes uses that 3X25 protocol on patients who don't enjoy (i.e., tolerate) their chemotherapy, with good results. I asked him why he doesn't always use it. "Well, we [meaning oncologists in general because it's what they were taught] just start with the standard [I call it "canned"] 1X75 protocol and change to 3X25 only if they absolutely refuse any more chemotherapy."

    You've Got To Be Kidding Me!

    That's why I read so many books (several dozen so far) on PC, chemotherapy, chemobrain, etc. I hope to find the time to write to a couple of the best authors of books on coping with chemotherapy and suggest that they add another chapter to their excellent books, a chapter on managing the endless meds and tests. That's all I've been doing for 15 to 21 hours a day for the past 30 straight days, since beginning chemo. I can't comprehend how people with even ONE other responsibility manage the first couple of months of treatment and testing this heavy. But if that's what it takes to avoid SEs and get superior outcomes, it's worth it.

  • Hi, Are you talking low dose taxol ever week 3 out of 4 weeks, That does have less side effects, many of the men from the Hrpca group years ago were on that, and had few side effects. What I am on is the every 21 day docetaxol. Thank You for your response, are you at Prostate Oncology specialist ( Dr Sholtz and Lam) I have thought about them myself. Thanks for your response.

    Dan

  • Yes ... same monthly dose but spread over three infusions each month then a week off. I expect to encounter some of the usual chemo SEs over the 5-month chemo period, but escape many of the acute (short-term) SEs due to the lower individual dosages.

    No ... I'm with Compassionate Oncology/Leibowitz & Eshaghian. He pioneered this (and many other aspects of his protocol) decades ago, long ahead of the big, sluggish institutions who (correctly, it might be argued) rely more on huge bodies of evidence and huge peer consensus to determine their course of action.

  • Yes , as I said many of the men from the previous group did the weekly 3 out of 4 week taxol and had less side effects, in fact another group member who was treated by Glode in Colorado went into septic shock with the higher dose q21 docetaxol but had good response was later placed on the lower dose taxol weekly 3 out of 4 weeks and did well with it, later he got some time with cytozan an older oral chemo that was used in the Servadio protocol see link ncbi.nlm.nih.gov/labs/artic... with 5 fu and something else to give to this date the best survival in advanced metastatic Prostate cancer. My Friend did not did just the cytozan as Glode has a paper showing good response in late stage with cytozan. Sadly Craig lost his battle after helping many men with his research and words of encouragement, through the foundation online support group he started.

    I have always been a fan of Dr Bob, and have read most of his older papers, I believe he is a genius.

    Dan

  • If eccentricity is a criterion, he qualifies. How many oncologists start their first consult with a new patient just after 6:00 PM, break up after 3:00 AM, then drive the patient to his hotel?

  • Paul , Yes I have known about the ice for years , I even bought elastogel chemo frozen gloves which worked great for my wife , however they don't work so well with me without a port I get the iv in my hands so I come in with a rolling cooler packed with 2 bags of ice, and gelpack for my tows, I put ice in water bowls soak my fingers all though and put the gel ice on my toenails, this can help with neuropathy and also to prevent a nasty fingernail problem where they fall off and turn putrid, I also suck ice chips to prevent mouth sores , also if I find one coming on the next day I will mix a cold glass of water with glutamine powdr and swish, or use salt water. No problems with any of it yet. I have also heard of people using bags of frozen peas to press their fingernails in or toes, for lack of expensive gel packs, and they work good you can just dig nails into the unopened bag of frozen peas and put them back in freezer when you get home.

    Dan

  • Hi Dan, I will be receiving my first chemo and shot of Lupton on March 30, 2017. Can I ask what you mean when you said the first five days were brutal? Can you befunctional? Was it being fatigue or nauseous? I'm trying to prepare for this battle- Nick

  • Hi Nicanto, you are asking Dan for a response, but it was actually me who said the first 5 days were brutal. By this I meant, incredible fatigue (taking a rest 2 times while climbing stairs - not normal for a 50 year old!). I also had terrible aches and pains in my body, mostly down my back and sides. It is like when you have the flu and you ache all over. I also had very sore joints (knees/elbows). Thankfully, nausea was not a problem for me.

  • Thank you for the reply. I am a 52 year old man in good physical condition and I am just too eager to get started and face the side effects.

  • Nick I do not recall saying the first 5 days were brutal, because I did well mostly with the first 3 chemo sessions, You are just doing I think you are saying Lurpon, you could have hot flash, stay cool , the chemo just go about your daily business make sure you have a supply of light laxative pills as that could be an issue for a few days after, but not if you take the laxative. And watch for high grade fever , if you get a temperature of 100, best to go to Doctors.I use ice on my fingernails and suck on ice chips to try to prevent a fingernail prob and peripheral neuropathy, which is a tingling sensation in extremities many do not get any or all they side effects, But I am glad you are getting early chemo, as just like so many guessed it appears to be better than waiting to kill as much cancer as you can taking the strong meds when the cancer is weak. I wish you the best, I believe you will breeze right through it and have many years with all the advances of the last decade , and the more to come in the near future. let us know how things go.

  • Thanks Dan. I will let everyone know of my journey. I am so happy and relieved with a lot of ease that I found this group - Nick

  • Dan, I am sad to learn that you are experiencing a difficult time at the moment with chemo treatment and I am always reminded of many occasions you have been so generously offering your valuable advice and sharing your own experience to ease other people's tension. My blessings for your relief.

    Paul, yes - peripheral neuropathy affecting feet and fingers of the hands is a common side effect of chemotherapy which is also difficult to cure. Recently a friend of mine in US used ice bags on his feet, hands and also on the head to minimize the effect during treatment. I have his photograph with the cool pads whilst receiving treatment. If you wish to have a look at the photo I can e-mail to you. ( My e-mail address is ksisira1947@gmail.com )

    Sisira

  • Thanks Sisira, I'll email you now.

  • Sisera, I am doing fine, thank You for your concern, I have been given so much more time to spend with family already I am eternally grateful. I feel ok, today I am going skiing, I was up late last night on dexamethasone, cleaning and doing my laundry and cooking, could not lay down, today I am off the dex and going skiing to enoy a nice day before the rains come, see what I posted to Paul on side effects, I may post another paper on chemo side effects frm the old timers who have gone before us may they RIP

  • Dan----for clinical trials<www.cancerresearch.org> or call my advocate # there--at 855-216-0127

    I used Ext 221--where there was a Jeanine there to help--I think someone has taken her place. They can load you up on Clinical Trials. Also get an Advocate at PCRI---look up number on the Web---when calling an Advocate, they will answer and walk you thru. If you have trouble understanding trials I would ask the PCRI advocate to assist. Between the 2 you should find what you need.

    You may have to do a lot of calling as when you get lists of trials you will have to call the trials and see if you fit, and if it is open for more people. There is always a Trial Director--with a direct Telephone # for each trial. And the Lead Doctor on the trial can many times be contacted.

    Nalakrats

  • Nal, Thank You for this, I have called PCRI in the past, they are so helpful. It would be good to have an advocate. I have been searching clinicaltrials.gov for years. I was unhappy with my Oncologist recommendation after genetic testing to go into a solid tumor phase 1 test of dose escalation, at my stage in this disease I want something that has shown efficacy and not just a dose escalation trial to find out how much drug we can handle. Thank you Nal for all your very useful advice , it is much appreciated.

  • This is the second response I posted to you on this topic, I keep forgetting to push the post button, I may be suffering a little chemobrain after all Hahaha

    Dan

  • My dads drop has been slow but any drop is positive. He just had round 5 which literally has knocked him on his ass- fallen twice. But after 4 rounds he's gone from psa of 59 to 32 and bone pain is starting to subside. Prayers and fingers crossed he can get through a few more rounds.

  • C , Thank you so much for your encouragement, Prayers for your Dad to make it 2 more rounds. I am very much happy to have a decrease over a rise , so maybe it will continue. 10 years ago when my psa was falling very slowly on adt, a very wise oncologist said that's ok, maybe when it increases it will increase very slowly, and it did , and I had lots of time.

    Dan

  • Dan,

    I'm no kind of expert but, for whatever they're worth, here are some thoughts on clinical trials.

    First of all, I suggest that you go ahead and get started looking for them. Don't wait until you have definitively failed chemotherapy. The reason is that I think it might take a significant amount of time to find, and be accepted into, a trial and to begin treatment. It's like that for everything else, and it can be like that for clinical trials too. So I suggest getting a head start. It might be that you'll be able to get things going quickly but it never hurts to be prepared for delays.

    There are two sources that I know of for information on trials in the U.S. One is the National Cancer Institute's website at cancer.gov, and the other is the National Library of Medicine's clinicaltrials.gov. Both have the SAME trials listed and, in both cases, the basic facts about each trial are identical and come from the trial sponsor's submissions to the government. Either site works but they have different search and display methodology so it's possible you'll find something on one that you missed on the other. You can use the search engine tools on each site to rule out trials of no interest. For example, you probably only want trials that include Stage IV cancers, and only ones that are treatment trials (not, for example, prevention or supportive care.) You may also have geographical limits to where you can go. If you find a trial of interest, you can look for its "NCT" number and enter it in the other to see what the data looks like in the other system.

    Then comes the question of what trials to look for. I presume that you've already failed hormone treatments. That may mean that no hormone therapies will work for you or, if they do, they will only work for a short time. That isn't certain! Zytiga and Xtandi both showed significant benefit to many patients who had failed other hormone therapies and, in addition, there are types of hormone therapies like estrogenic compounds and even bipolar testosterone therapy that could work. But at the very least, you may want to only look at trials that are for "castration resistant" patients. If you've failed chemotherapy too then, while other types of chemo might work, the odds are not as good as they would be if standard chemo had worked for you or had not yet been tried.

    I'm not sure what that leaves. The two things I know it leaves that look most interesting to me are immunotherapies and "targeted" therapies. I would not personally be too interested in Provenge at your stage because it seems to work best in men whose PSA is still low. But it may be an option. There are other, newer immunotherapies that might be tried and also the so-called "checkpoint inhibitor" therapies that attempt to turn off tumor resistance to your immune system cells. I saw that in one trial with 10 men, three obtained spectacular results with their PSA dropping below 0.1. Others got no benefit. So, like so much in this game, it's a crap shoot. It's possible that the immunotherapies will require an interval of time, hopefully not too long, after the end of your chemotherapy because chemo can damage the immune system and it needs some time to recover.

    "Targeted" therapies are treatments based on a genetic profile of your tumor. For example, some prostate tumors contain BRCA1 or BRCA2 mutations. As I understand it, BRCA is the name of a gene with two variants that acts to suppress cell replication. A mutation in one of these genes can allow uncontrolled replication. It apparently turns out that cells with these mutations are particularly vulnerable to treatment with olaparib (see Wikipedia). There may be other specific genetic mutations that also make such targeted treatments possible.

    So those are two kinds of trials that, to my inexpert eye, look promising. In the case of targeted therapies, you may even be able to find out in advance via genetic testing whether they have a chance of working for you before you go through the time and trouble of trying them.

    Best of luck.

    Alan

  • Due to congenital brain fog (not caused by ADT or chemo), I responded without realizing that you already had a bunch of replies that covered some of my points.

    Alan

  • skiing was great today, so nice to get out and take a drive into the mountains on a sunny spring day, I would post a video if I knew how.

  • If you can put the video on a website somewhere I think the only thing you need to do is post a link to it and healthunlocked does the rest. At any rate, I know that works for YouTube. Don't know if it works for other urls.

    Alan

  • Dan, I have worked with a guy who also had an allergic reaction, turned out that he was allergic to the preservatives used in the docetaxel. His Doc changed him to a chemotherapy (Docetaxel related) that is used for breast cancer and made with different preservatives. Unfortunately he passed and I don't remember the chemo drugs name. Ask your oncologist to consult with the drug company and perhaps a breast cancer oncologist.

    Joel

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