Severe Edema during last couple cycles of docytaxel and increasing one month later. 2 lbs added per day. Severe pain. Spreading higher up

Severe Edema during last couple cycles of docytaxel and increasing one month later.  2 lbs added per day.  Severe pain.  Spreading higher up

His my friends. My dad finished chemo one month ago. The last 3 cycles were brutal on him . A persistent severe cough and then 25 Lb. Weight gain, was gaining at a rate of 2 lbs. Per day and his legs swelled AND it's very painful for him to walk. It started where just his calves swelled. It us now all the way to his thighs and around belly. He The oncologist put him on lasix with an added drug for 3 days to aide the kidneys use of the lasix. He started to lose 2 lbs per day. Then it stopped working and again the edema now traveled to thighs and stomach so swollen it's hurting his back . Once again, onco said switching lasix is not an option stay on it and he gave the other med for 5 days to prime the kidneys to help the lasix to work. Onco claims its not due to Lupron becsuse he was on Lupron 3 months before chemo. He feels it's the chemo, but basically said follow up with your gp. Pulmonary tests were fine. Ecg didn't reveal anything odd. Any experiences or advice because I feel his doctor is too non chalant and that this is dangerous and it's very painful for him. The only steroid given was with each infusion and this severity did not begin until chemo 5. Here's the good news, psa 2.34 from 75 at start. Chemo effectiveness minimal but some lymph nodes shrunk more and some Mets. THERE WAS NO PROGRESSION OF DISEASE. so although, I feel another drug should have been added to drop psa lower during chemo for better results, being hormone responsive with no progression are still beautiful words. Edema is rapid and severe... Advice? Experiences with? Doctor Poss you think he should see? Worried. Chemo ended 1 month ago. Ty and bright healing light to all of you guys who inspire me daily. I always tell my friends people think testosterone makes a man, and deprived if it, these are the toughest most tenacious kick ass MEN that I have ever met. Ty in advance for your help. Xoxo erica

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  • PS this pic is very special to me and was Taken Sept 25th before chemo . I wanted to share it because this is the image I wish to be visualized for the future... Always smiling always together . I use imagery as prayer and this is my forever prayer.

  • patandemma@Daddyishealing

    fluid retention is a known and common reaction to docetaxel but not everybody gains 25 pounds. I gained about that much, My oncologist insisted diuretics (like lasix) would not help. Being a physician myself,I knew this was idiotic so I treated myself with lasix and aldactone and potassium DAILY until I reached my pre-chemo weight. Felt greatly improved.

    I did not have a cough but a large degree of fluid retention can lead to congestive heart failure (CHF) in people who were in borderline CHF and cough is a common early sign of it.

    Hope you find a physician who understands what's going on and is willing to take responsibility for treating it. Right now I think your onco wants your gp to deal with it while your gp wants to defer to your onco.

  • Ty pat and Emma, how did you take potassium? What form so I can have it for him or is it in a drug form?. This cough he had 2 years ago with the start of cancer. It went away . At chemo 3 came back with a vengeance. All pulmonary tests were clear. CT showed same small little in lung as before no progression. How long did it take to get the edema down and get off the edema protocal? The onco won't pressure mire than 5 days of aldactone. Would it be safe to stay on if he goes to a doctor and insists on It. So grateful you got to take your care into your own hands. Potassium form? Ty so much. No one replied and I was getting worried. Happy healing my friend

  • IF he is in EARLY CHF(as a MD,I would not make this diagnosis w/o examining him) a chest xray change would be a LATE finding).In questionable cases a blood test BNP can be of help in making the diagnosis.

    w/r potassium,it is a prescription medication whose dosage has to be determined by a physician in the context of other labs as well as other medications he is taking.

    Bottom line: see a doctor who is competent AND willing to take responsibility for the non-onco care of your dad. Easier said than done,I'm afraid,in your case

  • So a heart doc? Nothing in blood work did they say indicated chf

  • did they order a BNP?

  • No.. Again seemed nonchalant about it, and he said not sure if u should send you to a heart doctor a kidney doctor etc do go see your primary care.

  • I suspected that they didn't do a BNP.

    Try a cardiologist since he/she would check his heart

    Good luck

  • Good morning Erica. On behalf of all of us thank you for the compliment. Great to know I am still a kick ass rover. Sorry to hear your dad's problems with oedema. You will recall I went thru ten cycles without a problem and just have horrible polyneuropathy. Dad's chemo seems to be working. Why is he finishing @ 6 cycles. Was it preplanned or as a result of the side effects? My chemo brought me to a steady 2.0. Best effect was loss of nearly all mets especially bone mets. On Zytiga since Sept after 5 month break from treatment and have reached 0.030. So my vital signs good so far except for the ca. drugs messing my diabetes with glucose up x 3 times. Cannot complain.

    Thanks for your picture posting. Reminds us there's more than just our words on this forum. There's beautiful people with the fight of their lifetime. Pressed on by our lovely hard assed wives and daughters. Thank you.

  • Lol. Ty scruffybutt. Due to the side effects they stopped chemo as planned according to the trial that predicts better outcome. He was suffering too much in the past few cycles, and honestly I don't believe it would have been a good idea. His body was begging for it to stop. His fingernails are falling off, now finally lost all but a lil bit of his hair , still handsome as ever because of the smile back in his eyes that I'm blessed to have. Had he been stronger going into chemo perhaps ,at a better weight and physically fit, it would have been easier, but as much as I want to hear no Mets and psa even lower, no chemo was music to my ears. I was getting a very bad feeling. He was zapped and I see the life in him coming back now off chemo. I love hearing you say no Mets.... Man,tg that I was never a baseball fan since that's my daily chant lol and yes, my friend, you are a kickass rover. Ty for the encouragement. OK let's get this glucose under control. Have you tried the gerson diet. It's very hard, but heard great results. Also I heard a certain filter can help but a friend of mine is now off meds by following a diet for diabetes. You got this man. Keep showing us how its done scruffy and Ty for the comment. I debated adding the picture,but I think this disease and all disease I suffer from myself can feel so dehumanizing, and I know that my dad and I both have a smile meant to be shared. Wish I had pics of all of you since I pray in Visualization more than words but from now on I picture one kick ass rover happy and you'll know my prayer was sent. Lol

  • Hi again Erica, ty for that. The picture was the reminder we need. I will post one of mine even one of the real scruffy but dog I substitute for myself. He's better looking. Look forward to the diet, diabetic for 30 years T2 without probs but now? Don't want to win v Ca and lose to T2. I am not a loser and will return to kicking ass.

  • Thank you so much, everyone, for all the posts here. My husband and I have been following all of them for a good few weeks now. We are still waiting to hear from hospital in Germany about LU177 and are looking into Chemotherapy for my husband as well, so it is very good to read here about the different experiences people have with Chemotherapy. It will hopefully help us to get an overall picture of how much the therapy works, how people cope with it and so forth.

  • Good vibes sent to you both. I have documented my dads progress and experience and some of my emotions in my profile. Hope it helps. I haven't gotten to update but in the last weeks his finger nails died, tear ducts leak bow, and he did not lose all hair until after chemo 6 aND he still has some. Psa down. No progression of disease. I like what I read about the liebowitz method for chemo in another post. Look into that as well. Love and hugs. It's hard to see the weakness, the paleness and the pain do be prepared to sometimes be horrified but as scared as that makes you if it should happen because you know he feeds off your strength x just by your nature you will handle it with grace. Trust me in this. Trust yourself. Please keep us posted xoxo

  • Rapid, massive weight gain is a hallmark of Prednisone, which is habitually given with Taxotere. OTOH, Yale Med's Petrylak says the Pred is not necessary. And the beat goes on.

    The pain may be neuropathy, which for me would have been a showstopper at its first fingertip appearance since it is irreversible. Its extent over that much of the body surprises me if it is neuropathy, but then I'm a patient, not a provider.

    The oncologist's advice to "See your PCP; SEs are not my problem" is endemic, according to the research. It dumps the problem on doctors often ill-equipped to deal with it (my cardiologist had to do a lot of homework to make sense of my ADT/chemo drug cocktail), it hides SEs from both the research and the public, and it treats patients like very sick abandoned dogs, but by golly it lets our oncologists rise above our mundane lives and go peddle their habit-driven elixirs on the next person who hasn't studied their disease enough to have a clue what their doctor is doing. There is a solution to all that, but I'm finding very few ... darned near no ... PC pts wiling to bother with it: RTFM.

    Polite translation: Study up on the disease and its treatment options. We don't need to know the biochemistry, but understanding the practical aspects of treatment at the level well explained in dozens of books written for patients is, in my STRONG opinion, vital to success. Success, of course, is defined by the patient, not the oncologist. I want to die knowing I made the right choices -- as defined by ME -- at every significant decision point in this journey, and so far I believe I have done so. And because there are so few absolutes in this disease (I have recognized only two* so far), what the patient believes is what counts, IMO. The vast majority of physicians care first, foremost, and often almost only about how long they can keep us above ground, at any dollar, medical, or QOL cost**.

    * 1. My initial prostatectomy became a no-brainer IN MY CASE, but only after reading a dozen books and consulting with half a dozen oncologists was I certain of that. That certainty let me accept whatever outcome ensued.

    2. My ADT became a no-brainer IN MY CASE >12 years later when my PSA was headed into the hundreds within < 4 months, my primary met was wedged between my carotid artery and my trachea, and the state-of-the-art scans *I* ... not my oncologists ... found and set up determined that I was not eligible for focal (pinpoint) treatment.

    ** Outrageous accusation? I can back it up many ways, but the most egregious support IMO is the number of physicians, even entire hospital systems, in my own city and state which publicly refuse to honor any binding legal documents, from Do Not Resuscitate to Advance Care Directives and Living Wills. These arrogant bastards think they are so GD important that THEY, not I, are the only people qualified to determine how long and how severely I and my wife suffer in my terminal phase. Sorry, you self-appointed Gods in White Coats, but I live in an assisted suicide state and I have guns. If I have to use the latter, I will make the biggest, most highly publicized, physical and public relations mess your staff has had to clean up in a long time, including laying the blame all over that nice white coat. I am not the property of the government, and am sure as HELL not your property.

    One soapbox off, another on: about that diabetes: if it is Type II, it can probably be CURED and even REVERSED, without drugs, despite what your pill-pushing doctors tell you. Read Fung & Moore's book on intermittent fasting from and see what you think.

    Third soapbox: I suspect and hope that a MAJOR difference in ADT and chemotherapy options, SEs, and outcomes (few medical oncologists even tell patients that there ARE options) is the drugs used and HOW they are used in both ADT and chemo. Unless and until my ADT and/or chemo hit the SE fan big-time within the next few months, I will attribute -- rightly or wrongly -- their success and innocuous nature so far to Leibowitz's protocol and famed thoroughness, not to blind luck. Better yet, my local med onc is administering most of my Leibowitz protocol, under Leibowitz's explicit instructions, 7 minutes from my home.

    Despite that, a local PC forum member who just began chemo, is suffering almost every SE in its long list, feels and looks like crap, and says he's not sure whether he can go through with chemo ... shows no sign of even asking his local med onc -- who strongly supports and has administered the Leibowitz protocol -- to consider it or at least discuss it with him. I've offered him some carefully chosen books (he's smart and otherwise educated), but the response is, "What", he asks, "Read a book?" Like many, if not most, PC patients I've met, he'd rather suffer awful physical misery than read a book, even though reading for information is one of the best-recognized preventatives and treatments for the mental fog that usually accompanies chemotherapy, maybe even ADT. I don't comprehend that.

  • I appreciate the diatribe, ,and may I add, you are one hell of an articulate writer. Ty. There are so many pca books. Can you recommend or anyone recommend the 3 I can start with highlight and pass on to my dad?

  • Thanks. I've always loved writing, and it's one of the reasons I will walk away from any treatment that impairs my mind, fingers, or feet significantly. A few extra months of heartbeat isn't worth being relegated to watching repeats of The Golden Girls for those months ... TO ME.

    I'd definitely start with Chodak's "Winning the Battle Against Prostate Cancer; Second Editon". It is fairly recent and covers darned near everything in good depth and excellent clarity. After that might be any of the PC books by Walsh, Scardino, and Lange (PC for Dummies). There are many more good ones, but those cover the most ground. I found very useful decision fodder in virtually every book I read, but Strum's a little daunting and most of the others provided less dense pickings ... maybe only because I read them after the first ones. The exception is Chodak; his was the last strictly PC book found and clearly covered the most ground in them most readable manner.

    There's no need to read them cover to cover, because at each stage of the disease we have only specific options and interests. I haven't studied the newer "designer" targeted drugs in any depth simply because my disease hasn't reached those advanced stages yet.

    Chapter 6 of Fung & Moore's new book "Complete Guide to Fasting" is riveting reading for anyone with prediabetes or Type II diabetes. They are curing diabetics by the thousands without drugs after their other physicians gave up on everything Big Pharma has to offer. Most of the rest of the book uses intermittent fasting to fight many other health issues such as obesity and heart disease.

    Davis's "Fight Cancer With a Ketogenic Diet" ties in a whole 'nuther facet of nutrition, weight management, cancer, diabetes, and more. It's short, and it was among my most recent acquisitions, but it still added significantly to my practical knowledge in those topics. Even more broadly important and useful, it tied the many books I've read on the methods and benefits of ketogenic eating for most carb-loving Americans and world champion athletes to to its specific benefits for cancer patients.

    And even though your Dad has completed his chemotherapy, he may still learn some useful points on managing its aftermath from McKay's & Schacher's "Chemotherapy Survival Guide; Third Edition". It has been amazingly on-target as I have gone through my first month on chemo. I can't imagine entering or going through chemo without it.

    I just wish ALL to heck that I could still comprehend and remember 1/3 of what I could decades ago, but that's not normal at my age. Oh, well ... that's what highlighters are for.

  • Ty. That means so much to me. I'm doing exactly as suggested and I'll pass on to my dad highlighted because for now his attitude is what's making the difference and I don't want to overwhelm him. I see your research is very vast and you have a gift for writing. You might consider writing a book. I know on here I'm just inarticulate partly due to treatment for my own conditions making it difficult to use my once well honey writing and reading skills, so I can spot talent. You have it my friend. Xoxo I look forward to your book on Pca. Ty for these recommendations. Amazon here I come. Lol

  • I've been asked many times to write books on many subjects. It would be great fun, but there's no way I'd spend one day on a book tour to, you know, actually SELL one. :)

    And I finally figured out who "Ty" is. You're welcome.

  • If it helps my Onco tells me I seem to have a high tolerance to all drugs used so far. Never smoked, not overweight, former boxer, footballer, rugby Diabetic for 30 years but weaned myself off drugs. Don't do painkillers even aspirin. Never had a poor drug response. I also think some of it must be mental conditioning. although having wandered around my hospital chemo ward with my IV just to chat I talked with people in different stages of different cancers. All were cheerful no matter what. When I refer to mental conditioning I think mainly of my diagnosis of Incurable metastatic. If you're told the worst (at that time) you get on with it. Am cold blooded mixed with fearsome xxxxxx..Anglo Irish with a lot of French. Co Kilkenny Butler, Twickenham English family. Maybe mixed genes help?

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