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Unexplained weight loss and muscle wasting starting in earnest again

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Posted 1/15/2013 7:46 PM (GMT 0)
worried & 81,

don't worry, i doubt i will go anywhere. have too much time invested here at HW. i only wish my PC journey was as simple and mundane as some of the more fortunate men here have, then i would nothing to write about, lol.

i learned a long time ago in life, you truly can't please everybody all of the time, and that is not a goal of mine. i do my thing, let others do their thing, and hope it all comes out in the wash.

i will never be able to turn my back on those still needing honest support and encouragement. i am not a quitter, despite what i have and still going through. i didnt choose for my life to end up being the way it is, but that is what it is, there's no alternative to me, other than to keep on keeping on. death doesn't concern me, because there's no way any of us our going to get out of our ultimate appointment. if it isn't PC, then it will be something else.

i have made it to 60 with all i have endured. when i was real young, i never expected to make it till 40. so i am already on the plus side of my own personal expectations.

if it weren't for the constant pain, most of my every day life would be no different than most other men here. well, that and for those fortunate enough to still be working. i miss that aspect about my "new" life as much as anything else. i had no intention on being tossed out of my beloved business world and absolutely never had a retirement age in mind. got fooled on that one and have no continency plan to be "medically" retired at such a fairly early age. still trying to make the best out of that part, not much i can do to change it.

david
Posted 1/15/2013 7:49 PM (GMT 0)
upstate guy ( i think i asked you this once before, dont remember the answer, are you in upstate SC like me? or upstate some where else?)

yes, i admit it, i am a lifetime redsox fan for baseball, and a patriots fan since 1970, probably the most annoying pats fan in all of SC. you know how much the Panthers suck, so not much motivationg to be a fan of theirs, lol, i love a team that can win and win and win.

i predict: Pats and Niners in this Superbowl.

david
Posted 1/15/2013 7:59 PM (GMT 0)
Upstate NY ... Yankees and, regretably, a Bills fan ... trying to figure out if I'll be able to cheer for Youkilis after so many years hating him ... NY / NE rivalry all in good fun (except when Belichick runs up the score!)

UG
Posted 1/15/2013 8:34 PM (GMT 0)
David,

I had sort of filed a conversation under "what was that all about?" until now. At my last uro visit, when they weighed me, I made an offhand comment about what I expected it to be. The nurse remarked that my weight had to have increased since Sept., since I was on HT, and if it didn't, she would make a special note of it.

I read your post, and called her to ask about our conversation. Short answer (besides disturbing her lunch) is that no matter how much I exercise, they don't expect me to lose any weight, only gain because of the HT. If I stay even, that is already a warning sign of excessive loss unless I fess up to a new gym routine.

I'm not expecting to lose any weight, as the HT has basically knocked me on my arse as far as desire to walk, much less exercise. I'm fighting it, but slowly losing ground.

Interesting that it seems to often be the nurses who catch on to something the doctor may not notice. I hope your conversation helps with perhaps a new perspective.

Posted 1/15/2013 8:43 PM (GMT 0)
Ahhh...another Yankee fan (Upstate Guy). David, sadly John will never, ever, ever be a Red Sox Fan...I think he'd rather eat one of his pee pads than root for the Sox!!

BTW: speaking of pee pads, some of you guys may find this helpful. When John last visited with his urologist, the subject of incontinence came out. John had been wearing one pad a day only when he left the house. All other times, while he didn't need one he did have the occasional "squirt" and a fair amount of urgency to "go." The urologist said to try this: "squeeze your butt (like you have to pass gas but don't want to) several times. Do this throughout the day and let me know next time how it worked." Well, John has been doing this and has been paid free now for 2 weeks! And, when he takes his daily walks, he no longer fights the bladder pressure he had been feeling. Who knew something as simple as holding in a fart could help!

Sounds like you had a good conversation with your therapist and glad that she was able to clarify some things. Hopefully her suggestions will put you in good stead...and yes, you must have enough high quality protein to maintain muscle mass (and yes I know the goodies are more fun to eat...). Your poor body has been (and is going through) so much that you need to treat well.
Posted 1/15/2013 8:49 PM (GMT 0)
ug,

i always enjoy the pats beating up the bills twice a season,lol. if i had to pick a ny team, it would be the bills, have no use for the jets or the giants, they can both burn in flames.

upstate ny is a great place, use to do a lot of business dealings up your way.

david
Posted 1/16/2013 12:25 AM (GMT 0)
Hi David looks like you are still battling on under great difficulty, I can only hope that a more clearer path to your situation will present itself.

Part of my own strategy is to not post very much on this site, unless my situation changes, this helps to keep my mind off Pca, and helps me along the road to living as much of a normal life as I can, don't get me wrong, being part of this forum has helped and supported me greatly, and I will remain a part of it.

However I do drop in from time to time, to follow your journey, my next PSA is in February, so that will be interesting.

All the best, Mal.
Posted 1/16/2013 1:16 AM (GMT 0)
mal, always good to hear from you, my friend. good luck on your upcoming PSA test.

i really don't think much about my actual PC situation, its all these other issues, i.e. pain, etc, that keep me busy.

david
Posted 1/18/2013 7:19 PM (GMT 0)
Go Chiefs! Yes you may pity my plight regarding what Team I prefer.

I really hate to hear of this latest news. Just read of the passing of one and am still smarting. I have been praying for you on a pretty regular basis, and have nothing to suggest other than Spiritual.

I lurk more than I post mostly because sometimes my emotions get revved up reading about how hard this cancer is on each of us. While it can be character building, it is also deadly and debilitating to those who are diagnosed.

Thanks once again for chronicling your journey.
Posted 1/18/2013 8:25 PM (GMT 0)
thank you greetings.

while there are many common factors, each of our journeys is very unique in itself. some struggle more than others. for some, it is a walk in the park, and for others, its a constant fight to stay alive or ahead in the game.

david
Posted 1/19/2013 1:30 AM (GMT 0)
Purgatory--I am there nnow,too--wasting away, but I dodn't have any "work" to interefere. on hospice trying to control the pain! LIMITED SUCESS so far! Typing here 'or anywhere" is nearly impossible. Lung mets have had me coughing up great gobs of...gob?
Posted 1/19/2013 2:52 AM (GMT 0)
seq,

i have been sadly reading your latest story as well. appreciate your input, though it sounds like even that is taking a lot of effort on your part

proper pain control is what hospice is suppose to do best. my oncologist is also my certified Pain Manager. He said that I have an unsuall amount of cancer related pain, consider this juncture in my journey. For me, most of it is still from the radiation damage that was done to me. He does a great job of finding the right balance of pain meds, so that I can still think clearly and function as much as I am able to, while saving other doses and meds for the future for when things get worse.

i hope they havey you as pain free as possible. really sounds terrible about your lung pain and lung mets. i can't honestly imagine that part. so far, all of my pain is from the waist down, well, that includes my back too of course.

the fentanyl i am on, is doing most of the heavy work, thought we may need to bump up the dosage on the patches next time i see him.

i will be thinking of you, and hoping for the best, and i pray and trust they can keep you from suffering, and able to keep your pain levels managable. for those that don't suffer from strong chronic pain, there's really no adequate for someone to fully understand the sheer struggle it is to keep sane, and not wanting to panic at times. thank good ness we live in an age of modern meds to deal with the worse of it.

good luck to you, my friend. there's a lot of us here thinking about you, you have not been forgotten.

david in sc
Posted 1/19/2013 4:01 PM (GMT 0)
Hi David ~ it was time for some catch-up reading.  My heart goes out to my pal, Bud and I know Mel has a lot of decisions to make.  With you, it's like checking up on a dear friend I haven't seen for awhile.  Ron always asks about you and realizes how lucky he has been.

People care about you so much.  When new folks join in, they often don't know the background of your complicated medical journey.  As I was reading this thread, I was thinking what a special relationship/friendship you have with Sephie.  I am glad she is here.  (Sephie, I think I would love to have you as a friend out here. You are very wise.)

Often, she will write what I am feeling but I don't write as well!

My heart is always saddened by recent news.  We think about you often...and how brave Peg is.  It is good that she is working and I pray her healing is right on schedule. How is your book writing going?  As I have suggested, it would b well to perhaps find some of your early comments and move from there.  You are such a good communicator.  I am so glad I got to hear and see your video.

It is good that you reconnected with the nutritionist on staff.  I wish you had better news about the weight and muscle tone of your body.  Yours has been such a difficult journey.  May God continue to give you strength in dealing with your pain!

Hugs,

Aimzee

Posted 1/19/2013 4:17 PM (GMT 0)
81GyGuy, David will be here writing as long as he possibly can.  He has mentioned that he was planning on writing a non-fiction book about his entire medical journey surrounding bouts of cancer and radiation damage.  I like that you wrote:

Some of us have said that Raddad is the Heart of this list. If that is so, then you are the Mind of it.

For being relatively new, you have terrific observation skills.  Right on!

Well, the pitchers and catchers are reporting to Spring Training soon.  My 5 year-old Grandson is so excited I got him a Justin Verlander and Miguel Cabrera baseball cards!  Two future Hall of Famers.  turn

Peace,

Aimzee

Posted 1/19/2013 4:30 PM (GMT 0)
Aimzee:

Are you a Detroit fan??

I am an avid Tigers fan. They have provided us with a lot of fun/excitement. When they have a need, their GM goes out and makes trades/spends money to address that need. We generally try to go see a few games a year and watch most of their games on television.

Contrast that to the Lions. They are a great team with some very specific critical needs (secondary and another good running back) yet they have done nothing to address those needs. They have a multitude of losses in the 4th quarter by a very small margin because of these deficiencies.

You are so right about Sephie. I wish I could write that well. Sephie has expressed my thoughts 100%. In fact, when I say the same thing, David takes offense and I am probably too blunt and/or abrasive. So be it.

Mel

Posted 1/19/2013 4:43 PM (GMT 0)
Aimzee and Mel: you guys are making me blush (and that is no easy feat!). Aimzee, consider us friends...perhaps someday we will actually meet but until then, I'm here for you and for all my friends on HW.

If I have accumulated any wisdom it is due in great part to the years I've spent here on HW meeting so many wonderful people and becoming a part of their lives...and they mine. My heart breaks whenever I read of someone's set-back or new set of woes. There are many here facing some very difficult challenges: David (of course), who is very special to me and my husband John; Mel, whom I've come to admire for his tenaciousness in learning all that he can and facing some tough choices; the wonderful women who come here and share their insights and stories...the list goes on and on. And, of course, a special shout-out to our wonderful friend, Sonny, who never, ever once had a mean thing to say and never, ever complained about his lot in life. I miss him more than words can convey but am glad that he is carving out a new life for himself. Last, but never least, to our moderators and fellow warriors in this battle we call prostate cancer.

Sequoia: I too have been reading of your journey and send very special hugs and tons of prayers at this time. You are just one of the brave men and women whom I've come to know and love over these past (almost) 5 years.

As my husband John approaches the five year mark, and I think back to the challenges he and I have faced both individually and together, I have to marvel at the goodness that exists in people. So much kindness and understanding and always such support. I thank you all from the bottom of my (60 year old) heart.
Posted 1/19/2013 4:47 PM (GMT 0)
Are you a Detroit fan??

 

Oh, you bet I am!  My first date with Ron was to a Tigers game!  I think I have mentioned he's a sportsaholic! smilewinkgrin

I have been blessed to have four Grandchildren and they all love the Detroit Tigers.  We don't talk about the Lions very much! 

Don't laugh, but he has set up two televisions, next to each other, so he can watch two sporting events.  When we rent a movie, he still has some sports on the smaller TV. I have wondered why there isn't a SPORTS thread here, but I realize this is a medical forum.  And there might be too much bickering going on! 

YAY TEAM!

Aimzee 

Posted 1/19/2013 4:51 PM (GMT 0)
Aimz:

Good point. We never have bickering here on HW!

<g>

Mel

Posted 1/20/2013 10:04 PM (GMT 0)
Just something to think about from a cancer book based on Natural or Holistic ideas in fighting cancers.

The subject is this: Cachexia

Cachexia is an unintended progressive weight-loss with weakness
and muscle-wasting that is common in the final stages of cancer and
AIDS. At this point it does not matter if there are tumours present or not
because the cause of cachexia is due to microbial overgrowth in the
blood. The immune system is devastated by the fungal forms of the
cancer microbe that are now polluting the whole body. Most of the red
blood cells are destroyed or unable to transport oxygen. This can only
be reversed with a concentrated antimicrobial program as explained in
Chapter 4.
If new to this program antimicrobial therapy should be increased only
gradually as there may be strong initial reactions with nausea and
weakness from microbial die-back. A high fluid intake helps, and
sometimes also the amino acids arginine (2-10g) and ornithine (1-3g).
Both reduce ammonia generated by the destruction of microbes. Take
arginine in the morning and ornithine near bedtime to improve sleep. In
addition retention enemas (or implants) with wheat or barley grass juice
or extracts of protein powders may be used.
============================================================
perhaps looking into such things as to how to boost immune system could be of value???????
Posted 1/20/2013 11:31 PM (GMT 0)
perhaps, zufus. that thought has been discussed with the oncology rehab folks.

but I have a bizzare immune system, other than being a cancer magnet, I stay healthy. I never get colds, coughs, sore throats, flu's, ear aches, sniffles, etc. I live in one of the highest regions in the country for allergies, and probably the only person I know first hand, that is obvlious to allergies of any type. so far, I am even immune to both poison ivy and poison oak. have rolled in both before with no ill effects.

having said that, I still have had 4 serious bouts of cancer within a 13 year period.

don't know if both things are connected or not connected, kind of seems inconsistent.

oh, and if I get a scrape or cut, I am one of these folks that seems to heal up almost over night or in a day or two. in almost 39 years of marriage, my wife has never even seen a bruise on me.

so why the cancer magnet part? just doesn't make sense.

david
Posted 1/21/2013 4:26 PM (GMT 0)
David,

darn, I had so hoped that the lack of posting in early January was because you had managed to stablize your weight. Although I do not post as much as many do, I check the board each day to see how special members are doing, and offer any help I can from my own experience. In over 30 years in the Health Insurance field, your case has sure been the strangest I am aware of. Your openness and courage inspire me.

I wish that some on this site would "get it" that they are not experts in medicine, and that just because something worked for them, it does not mean it will work for someone else. If "their" solutions were so good, we would all be cured and there would be no need for this web site! Somehow I have been fortunate to be cancer free for just over five years, and my only deficit from my journey is complete ED. That said, I know that it can come back at any time, as there really is no 100% cure from this cancer. It is a fickle cancer, my Grandfather and Father and one Uncle had it, my Uncle just found out at 91 he has it, and his son already had it at age 60, yet my brothers at age 65 and 70 have no trace of prostate cancer. Every case is different and there is no one size fits all tratment plan out there...yet. Keep fighting David, and we will all be praying and offering you strenth in your trials.

Posted 12/15/2013 5:13 AM (GMT 0)
David,

I'm new to this forum. I discovered this thread earlier today in a Google search for information about weight loss and muscle wasting and pain associated with prostate cancer. Although it's been a while since the last post to this thread occurred, I'm hoping you can shed some light on these issues, which I share (along with a similarly complicated case of PC that often heads in unexpected directions and leaves my doctors shaking their heads in wonder). Have you resolved them, and if so how? I'm especially interested in whether you identified the source of the pain. Perhaps you described the resolution of these problems in a later thread but I can't find this information.

Thanks for any insights you might have, and I hope these problems have resolved.

Bill
Posted 12/15/2013 5:40 AM (GMT 0)
Buffalo start a new thread on your issue by the post new topic button to the lower left. title it and make your post. Welcome here
Posted 12/15/2013 6:16 AM (GMT 0)
Bill,

You have dug up a very old thread of mine, hasn't been answered in almost 11 months.

Perhaps would be better to start a new thread, introduce yourself, and explain your particulars.

To answer your immediate question, this weight loss/wasting problem was never fully explained, diagnosed, or answered by any doctor. It comes and goes, with a mind of its own.

I went for several months this year, without these problems, like it resolved itself, then in the past month, it started up again, lost 14 lbs in a little over 3 weeks, with no attempts at dieting, cutting back eating or anything on my end. The muscles in my upper arms, always the pillar of my strength, have lost a lot of mass/strength through this last bout. Also, upper thighs and lower legs too.

My doctor examined me recently, and was equally puzzled, especially since it started again out of the clear blue.

Then in the past week, seems to be leveling off, and the weight loss has stopped, or at least slowed way down.

What started out as radiation damage, continues onward, even 4 full years later after the treatments ended. At first there was the initial severe damage with my bladder and bladder neck, then the nerve damage in my "core" area, and it's still spreading to different places.

It also seems in the past 2 months plus, to have triggered some long dormant other neuro problems I have had in the past.

By the end of this month, will be seeing a highly rated neurologist, whose job it will be to start again from scratch, and via process of elimination, see what can be scratched off the list, and see if we can hone in on what is really going on aside from dealing with the norms of advanced prostate cancer.

Hope that helps.

David
Posted 12/15/2013 12:43 PM (GMT 0)
David,

Past few weeks, my scheduled is going to bed around 9-9:30pm, awake and always up around 3-4am. This morning, have read this entire post (I'm a SLOW READER!). Found it very informative and interesting to say the least!

I was glad someone opened it up and I now know the "Rest of the story."

Since I'm very new to HW, I now have a clearer incite of some of your past medical history. I've found you as well as others, have a vast amount of knowledge about PC\PCa. Thank you for all your post and I like others, are praying for you and your wife.

One of these days (soon I hope), I still would love to chat with you (when you feel up to it) via land line.

Take care and have a great day!

Dave in Bartlett, TN
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