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My Zytiga Journey

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Posted 10/30/2012 5:45 AM (GMT 0)
SR...been awhile, I am so sorry to read about the pain you are having.
Sending prayers and good vibes to you. Hang in there...

Kathy
Posted 10/30/2012 9:51 AM (GMT 0)
Sequoia-hoping it is working for you. My husband was on zytiga and now I don't think the doctor gave it a fair shot. We are much in the same boat as you with MDV3100: it might be failing. We HOPE not.
And pain is a rotten SE.
Wishing you well.
Posted 10/30/2012 3:28 PM (GMT 0)
Ms.WW, nhwife, KJ63--thanks.

I *KNOW* I have to give this Zytiga a "breaking-in-period", but my state of pain today vs two weeks ago is markedly different, in a BAD way. I have purposely refrained from doing anything rigorous to give my body a chance to "heal" from something I inadvertently did, but that doesn't seem to be helping. Also not helping is I had some periodontal work done a week ago, and my mouth is so sore I can hardly eat (and food has kinda lost its appeal). (Sigh) Bring on the Drugs!!

If any of you "out there" are taking mild doses of Vicodin or Percoset (I usually take only a half-pill), have you noticed any "tolerance"? That is, the same amount of painkiller is no longer giving you the relief it once did? I *MIGHT* be there. I try to alternate between a half-Vicodin and half-Percoset, but the truth is, they are BOTH opiods (is there a difference between opiods and opiates??) and I would suppose that "tolerance" could be an issue, even in the low doses I take.
Posted 10/30/2012 4:15 PM (GMT 0)
Hang in there Ranger! My experience with those is that you dont notice how bad the pain can be, until you stop taking them. Also take care to not get constipated while on them. Nagging pain sucks, so try to distract yourself somehow and not keep it at the front of your mind. Sending very good vibes to ya!
Posted 10/31/2012 12:24 PM (GMT 0)
sequoiaranger

Hey brother, so sorry to hear about the pain you are going through.

I have no information at all for you.

Prayers on the way that the Zytiga is working for you!

Hugs

Bud

We will beat this crap
Posted 10/31/2012 5:47 PM (GMT 0)
Startech and Raddad--I will take "good vibes" and prayers from any quarter!

Miraculously (?) I feel MUCH BETTER today, free of the myriad muscle/bone pains of the last few days. I did a lot more sleeping in the past days, and was "lazy", so maybe that AND the good vibes/prayers paid off! A respite from the pain paradigm just does WONDERS for the psyche!!

Still, I do NOT know what the underlying CAUSE of the bone/muscle pain is, otherwise I would avoid whatever it is I am doing to "cause" it. I can't be "lazy" on a permanent basis-- too much to do!

Posted 10/31/2012 6:26 PM (GMT 0)
sequoiaranger,

I'm glad to read that.  Been thinking of you as well.

Jerry L.

Posted 10/31/2012 7:20 PM (GMT 0)
Glad you had a pain free and restful night. Hope things continue to hold for you. You'll be in our prayers...
Posted 11/1/2012 3:55 PM (GMT 0)
"There's no fool like an old fool". Dat's me.

"State of pain" today? Mild discomfort ('cept for my gums, which haven't seen an OUNCE of improvement in the week since being worked on).

FINALLY figured out why I was in so much pain last week. *MAYBE* I will learn from this horrendously painful experience. I was doing yardwork and bending and breaking some REALLY TOUGH STUFF to fit it in the refuse cans. I was STRAINING to do it (but I could). That is, it took "all my might" to do it, and I did it repeatedly. I had been deliberately "pushing envelopes" and trying to see how much strength I have recovered, but I can now see that the above was WAY TOO MUCH. I think that not only were my weak muscles duly strained, but that my cancer-ridden bones around my ribs and shoulders "broke" and gave way slightly. That is, mini-breaks where the tendons connect. Typically, my system doesn't tell me AT THE TIME that what I am doing is too much (I guess it's the "fight or flight" adrenaline kicking in to "save" me this time, but I'm gonna PAY for it later when presumably I'm safe from the "peril" I was saved from.)

It is amazing to me, in contrast, how much the mind is "influenced" by pain. That is, it is so hard to be optimistic and plan for even the near future when you HURT. My mind again went to a "dark place" of impending doom and feeling of fading hope last week. I was thinking I was going downhill fast. I fought the idea that I would have to take stronger meds continuously, and all kinds of other dark thoughts flooded in. Now that I have "recovered", the darkness has indeed receded.

I *KNOW* I am weak, compared to last year at this time---radiation and six months of chemo have taken its toll. So I think that my "guideline" from now on is that I will NOT STRAIN my muscles. I will use only some 75% of my strength to do anything---if I use more *I WILL BE SORRY*!

I just HATE IT when my pain is my own d__n fault. Gotta be wiser and not be such a fool.

Post Edited (sequoiaranger) : 11/2/2012 2:03:46 AM (GMT-6)

Posted 11/1/2012 8:57 PM (GMT 0)
SR...LOL, great post. So happy your pain has decreased significantly.
Posted 11/2/2012 4:10 AM (GMT 0)
SR. The same thing happened to me. As soon as my PSA went below 10 and all my bone pain was gone, I went to the gym and did an hour on the exercise bike. A day later I was calling my oncologist frantically saying "THE CANCER IS BACK! MY LEGS HURT!" It took two weeks for me to calm down and the pain of the single hour on the bike to go away.
Posted 11/2/2012 5:00 AM (GMT 0)
Zytiga worked for 10 weeks, after one month his PSA went down to 38! 1 weeks later went to 211 , one week later 269, one week later 1035. Next treatment Taxotera downto 965, with on that last month 2 spinal surgeries, waiting for next chemo Nov6th... : No idea what to exect, cancer has taken over right thigh bone, severe weakness, can't even lift left foot high enough to put on soak or pants, but surgery did help spine pain from a 10 to a 4. Cancer lesions in lumbar and pelvis was innumeral
They are thinking maybe 4 months, 5 max months left, standard radiation for spine pain as last resort so he can keep what healthy bone marrow for as long as he can. If leg use gets worse I can see him stopping chemo and looking for quality not quantity.
Posted 11/2/2012 8:51 AM (GMT 0)
Jitters99...I am so sorry, your post brought tears.
Prayers and good thoughts,
Kathy
Posted 11/2/2012 4:55 PM (GMT 0)
Jitter, so sorry to read your post. Both of you will be in our thoughts and prayers. As tough as the next few months may become, remember to take care of yourself- as a caregiver the demands will be great and you may have the tendency to ignore it. Keep in touch and if there's anything we can do........
Posted 11/2/2012 7:12 PM (GMT 0)
Sequoiaranger,

Grins and hugs. Ok you figured it out - Don't do that again!

Hugs!

Bud

We will beat this crap
Posted 11/2/2012 10:03 PM (GMT 0)
Raddad: >Ok you figured it out - Don't do that again!<

Yeah, reminds me of the Borscht Belt-type comedic schtick like:

"Hey Doc! It hurts when I do THIS (arm motion or something). What should I do?"

Doc: "Don' do dat" That'll be fifty dollars, please."
Posted 11/8/2012 5:01 AM (GMT 0)
My Zytiga journey is *OVER*.

EXTREME muscle cramping (even while doing nothing, but especially while sleeping) sent me into "10" pain some of the time, and "9" pain the rest. There was NO position of comfort that would even get the pain to "3" or so. Funny it did not affect my lower body, but my upper....UN-F-ing Believeable.

I started taking Zytiga in early October, and had seemingly NO side-effects whatsoever. Around mid-October I started getting minor aches in the back/neck, but attributed them to "overdoing" some physical activity. The aches came more frequently and intensely, and the latest bout a few days ago was immobilizing without beaucoup drugs. I had deliberately NOT done any physical work that might "set off" the cramping a few days prior to Monday the 5th, because I had to drive my spouse to the airport early in the morning, before sunup (she can't drive in the dark). Sunday I was having doubts, as I had periods of INTENSE back pain, but also periods of relative calm. Monday I duly drove (hurting, but not too badly) her, and got some shopping done, but was hurting badly later. THEN, on Tuesday I had *THE WORST DAY OF MY LIFE* when agony was my constant companion. I mean SCREAMING OUT LOUD agony. Luckily, a phone call to my onc got me a prescription for "Soma" a strong muscle-relaxant, and the order to stop taking the Zytiga. I had a small window of "medium" pain, so drove myself to the pharmacy. I am assuming I have a build-up of Zytiga in my system that will take a while to purge, but at least with the Soma and Percoset my pains are now minimal again. But I am in a drugged haze, having difficulty typing (probably 10-15 errors per line I have to go back and correct).

My reactions to Zytiga might be extreme, but there is NO WAY I can continue. I see my onc tomorrow, so we will re-stratigize then.
Posted 11/8/2012 11:20 AM (GMT 0)
Sequoia, sorry to hear of this. When my husband was on the zytiga, he had few SEs.
If you are considering xtandi, ask your onc about the SEs of fatigue, bone and muscle pain, and the spine compression we have just learned about. We think that due to the years on HT, my husband does have less bone density and so it was already leading to the bulging discs. The xtandi seems to have made it worse. My husband is currently getting therapy to deal with the spine issues. He is also seeing an acupuncturist to deal with the fatigue.
Of course, that all being said, everyone is different and you may be lucky to have few SEs with xtandi. I hope so!
We'll know tomorrow if we continue with this.
Posted 11/8/2012 12:52 PM (GMT 0)
Seq,

I am sorry to hear Zytiga was so bad for you. Hopefully the meeting with your onc goes well and you guys come up with a good plan B. Take care.

SC

Posted 11/8/2012 8:20 PM (GMT 0)
I nowbhavebread your journey. hate to hear about such severe SE, sonwasntvsure i wanted to hearnall the pain - just hard for me sometimes. Even though you and my husband have finished your Zytiga journey for different reasons, I will be interested in what is next for you. As I said before, our journey with little SE may be because he wasn't on it too long.....but longer than you, so who knows.
Posted 11/8/2012 8:28 PM (GMT 0)
Sequoiaranger,

So sorry to hear this.

Do you think the Zytiga was causing the pain? I've looked at side effects listed and do not see that for Zytiga.

Good thoughts and prayers on the way to you my brother!

Hugs

Bud

We will beat this crap
Posted 11/8/2012 11:37 PM (GMT 0)
Thursday (two days after the intense pain): Haven't taken Zytiga for three days. Back to "normal" hurt. Onc was surprised--no one he knows on Zytiga has reacted like me. Of course the only way to really tell if it was that Zytiga is to start back on it again. NO THANKS!! PSA shot up to 103 (from 19 under chemo). Need to re-strategize. I am taking a new bone scan (last one done in March) and will probably undergo some spot radiation on sore spots. Seems like Xtandi has its own set of SE's ;(

So I don't really know where I will go from here. I fly to Montana to see my brother in a couple of days--a MUST, as I really think it's the last time I will see him before one of us passes. THEN an new regimen of anti-cancer strategy can begin.
Posted 11/9/2012 12:11 AM (GMT 0)
Sequoiaranger,

This was not was I was hoping to read!
I was hoping by some fluke it was something else causing the pain and that it could be addressed without having to take you off of Zytiga.

Husband is on month two. So far just extreme fatique (which never subsided from radiation) and some joint pain, which we were told could be normal. Overall, he's not having any trouble with it. Will see how much good it's doing in about 3 weeks.

Blessings to you...
Posted 3/14/2014 10:21 PM (GMT 0)
My husband has been on Zytiga for 3 months and his PSA has gone down each month by about a third each time ,and no SEs. We are hoping it will continue working we have heard of people on it for 13 months and still working but who knows -it is unchartered territory -all the best to those also going through this journey , it certainly wasnt on any of our life plans!!!
Posted 3/14/2014 10:39 PM (GMT 0)
Welcome to the forum, kayemcA. Sorry you need to be here but glad you found us.

I've started a new thread for you so folks can say hello. This thread is kind of old.

Click here: www.healingwell.com/community/default.aspx?f=35&m=3020821
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