Starting the journey with family

Hi all,

My father was diagnosed about a month ago with advanced prostate cancer that has metastasized. English is not his first language and he is still absorbing all the information and its implications, so I am doing my best to research and communicate information. We are being treated at NYU Langone, where18 days ago he started lupron and two week ago his first cycle of taxotere+zometa+nuelasta. He is also taking casodex. Third-fifth day after chemo were bad but then he felt better; however around day nine he started having burning knee and foot pain. Last night and today he could hardly walk from the pain. Has anyone experienced this side effect before and know how to distinguish which drug is causing what?

Best,

Anya

19 Replies

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  • Hi Anya, I am sorry to hear that your father has joined this group of fellow travelers. I have no experience to answer your questions, but offer condolences that your father is suffering from this dreaded disease.

  • So sorry Anya and Dad. Hope the pain goes away soon.

    Jackie

  • Hi. please check out my posts and bio which details treatment . I am also the daughter of an amazing man, who has to deal with advanced prostate csncer, and it breaks my heart to see my very best friend have to go through this, but stay on the forum. hope binds us, and here you will surely learn and muster the hope you need to pull through. also read the thread from a 17 year survivor and cherish the men on here who go out if their way not only to live fully but to help others learn what they go through and bring true awareness and research no Google search will give you. xoxo prayers for you and dad

  • Burning pain..describe more fully. is it muscle burning and weakness. is it a numbness and burning.? the Lupron causes muscle loss and can cause this weakening , but after Taxotere second cycle by day 5 my dad actually could not walk the pain and exhaustion were too much . it let up around day 10. write all symptoms down and chart so you can figure out which drug. chances are it's a combination of the androgen blockade and the Taxotere , both of which have the power to lengthening his life if he can pull through. what's important for you to relay are the stories of men who have gone through this and still live fulfilling lives. these men amaze me. Convey to your dad just how much research is being done with pca and also see if he is open to complementary supplementation that might ease his symptoms and help fight the cancer as well. What you described sounds like neuropathy, but you were not specific enough for me to distinguish and I am not a doctor. Taxotere chemo is known to have the side effect of neuropathy especially in the feet. I suffer from polyneuropathy which is diagnised by electricsl testing by a neurologist. But realize quite hobestly that chemi is a poisin and the body infkames frim poison, so a neerve might be impinged jyst frim inflammation even if its bot visibke. pain is an overwhelming , overpowering thing . I have chronic pain 20 years and I'm disabled so I do understand pain. it's important that he knows there will be an end to the pain and charting will help that . if it's nerve pain speak to doctor about neuropathy possibly being caused by the chemo . if it's muscle pain , just to get through look into supplements, magnesium being a big one. have him bathe in Epsom salt,,and listen to his body, as fAR as stretching and howe long to walk. Ask yout doctor avout phyducsl thetspy for him to help msintsin muscle and trear symptoms along the way . if stuck in bed little motions like rotating the feet etc keep blood flow active which is important as is distraction with something he loves. if he has no neurological issues, a tens unit will help to bear the pain naturally as will alternating ice and hear and seeing what works. wish I could hug you and let you know this will pass. Chart all treatments and symotoms, because if you see a pattern it will give you great relief to know how long thid pain lasts. Im in nj, close to whete he us being treated. Some olaces do masage therapy free for cancer patients. One i believe is near ridgewood nj, but im sure there are more. This may help ohysicslky snd mentally. My dad wibt go because his pride is too much to be treated fir free, but it is certsinly worth doing please keep us updated on dad. hope this helps. do not give up. you are probably the main reason he wants to fight so try to fight through and stay positive, but don't force anything in him. let him go through his emotions in coping, and just let him know you understand . my father pulled away from me a lot while mentally accepting all of this, and it makes me cry because we were playing a game and I asked him what his one wish would be..he didn't say a cure, he said that my children will be OK and his eyes welled up. so I cry writing this, but don't show your anxiety because the energy is contagious just reassure him , as most men on thus treatment do suffer pain in cycles at some point,,and pain shows that yes the chemicals are working and the body is responding as it knows how to, trying to defend itself inflammation is a defensive system, so his body is intelligently responding . hope I helped quell your fears. I'm here if you need me

  • When I went through taxotere treatments,the bottom of my feet on occasion burned like someone had a flame on them. I was being treated by Maha H. Hussain who is a world renowned prostate cancer doctor. She informed me that the chemo was causing the burning side effect. after the chemo treatments it went away, not to return. Neulasta is a good thing, it's forcing the bone marrow to produce white blood cells. I used to self inject myself with it the day after my chemo infusion and had zero side effects. My foot burning was caused by temporary nerve damage due to the taxotere (Docetaxel) treatment. It will pass on, hang in.

  • Thanks for the reply! He gets pretty bad bone pain on day 3-5 which may be the nuelasta but we realized the knee and foot pain is most likely gout. He is not overweight or diabetic but has had gout flare ups every year or so. I guess the chemo drugs can increase uric acid which can cause more flare ups.

    On chemo and nuelasta did your reaction and side effects vary from cycle to cycle?

    Best,

    Anya

  • Around my 4th cycle of chemo, I started to feel a little fatigued. I'm a runner and the combination of chemo and 80 degree heat did drag me down while I ran. Nuelasta never did cause me any side effects. It did keep my white blood count up. With nuelasta, timing is everything. You must inject with 72 hours of chemo or it's to late. at least that's what my oncologist told me.

    Relax, your father will be ballroom dancing in a month or two. Just get through the chemo courses and everything else is a breeze. This is just the beginning, start planning his 2018 vacation while the prices are low. Smile.

  • Ha, thank you! We sure hope so

  • And Happy New Year!

  • And happy New Year to you. My daughter lives in Brooklyn used to live in Chelsea and I visit your area frequently. I'm stuck in rural Michigan. Take care of your father, he loves you and needs your moral support. Goodnight.

  • Of course! Took a few weeks off work to help out. Glad you've had a positive experience and I hope it continues.

    Have a great night and a happy and healthy 2017

  • Hi, Did you ever have radiation while on chemo? The oncologist is suggesting it and I'm concerned the combo of chemo, radiation, lupron and casodex may be too much. However, I've read some studies that chemo can make radiation more effective.

  • No I did not. Of course each case is different, all i can say is that in my case I wasn't treated with radiation. Not yet anyways.

  • thanks for the quick reply

  • And thank you for the encouragement. He is just about to turn 60 so we are aiming and hoping he has a long and mobile life ahead of him (trying to stay positive!). The doctor called to say his uric acid level is high and if the knee and foot are painful to the touch, it's most likely gout, so we gave him colchicine. It's taking longer to work than usual but hoping it comes down bc he was looking forward to starting this New Year right. On the bright side his first psa score since treatment went from 450 to 36.

  • I was dxd with gout when I was 17 and went through all the known treatments. My brothers now suffer, however at 70 I have not suffered since I spent a few years in Greece and my wife and had a Greek GP. He took me off drugs and made me drink up to 5 pints (3litres) of water a day. Other liquids did not count in the daily total. Following that regime has also helped me virtually eliminate my diabetes.

    So gout taken care of for you.

    I, like my brothers in this forum - and we feel we are brothers - have metastatic PCa. Gone from 200 PSA in Nov 2014 to 0.09 2 weeks ago. Gone from 40+ bone mets to virtually zero. Yes, I have polyneuropathy caused by 8 months of Docetaxel. But the painful times are reducing. My own potential survival grows a little longer. Don't try to stay positive. Be positive! You are positive! And what gives me more strength is how many wives and daughters are so positive about their menfolk. I include these in my emotional band of brothers. Thank you ladies. David

  • He does have a long and mobile life ahead of him. they have more prostate cancer drugs available than brands of dog food, with more in the pipeline. Heck, he is just getting started, start getting worried in ten years or so. By the way, NYU is a great place to go for treatment. He has everything going in his favor, don't fret. The best treatment I have had so far is my wife and daughter telling me that I'm needed.

  • Any you should have your dad try some CBD for the chemo sickness. It has helped me with chemo side effects from taxotere and lupron. It also may help him for CANCER pain. Look up hemplifetoday.com or CWHEMP.COM for information. I hope it helps your dad as much as it has me.

    Dennis

  • Anya,

    Malecare has a support group in New York City for men with advanced prostate cancer, like your Dad. We meet on the third Thursday of each month in Union Square from 6:30 to 8 or 8:30.

    We are a group of guys like your dad. I strongly suggest that he come to our group. If you are interested let me know and I will forward specific information.

    Joel

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