FIGHTING BACK

[CERICWIN]

I've been called a "warrior" a number of times, but I didn't really feel like one until I began radiation this past Tuesday, March 28.       Somehow just taking the hormone therapy didn't seem like actively fighting against the cancer, but now it's different, somehow.        Even having my testicles removed last November with a bilateral orchiectomy seemed more like a defeat than fighting.

And it also felt like a defeat when my radiation oncologist didn't think that rad. would be too risky, possibly opening a stoma in the rectum or bladder.    The alternative was surgery to remove bladder, prostate and a colostomy, which was the most frightening possibility for me---very invasive surgery.

Now with 20 rounds of radiation scheduled to fry, to zap the prostate and shrink the cursed thing again seems to me more actively fighting back.       It's only palliative, which I realize, but it's like attacking an enemy that has tried to destroy me.       The hormone therapy seemed more passive, but now I eagerly look forward to the radiation treatment, so far.       I've only had three (the machine was down one day) and I know that there can be complications, but it has given me some new hope.      My first round of 10 radiation treatments to the sacrum back in July, 2014, went well, without complications.

Monday I'll have my next treatment, immediately followed by the monthly labwork, with new PSA and testosterone levels, and it's anyone's guess whether either or both will be up or down.

Spring has given me new hope; a season of renewal and rebirth, and I'll win this skirmish in the battle against prostate cancer.

CERICWIN

[Aussiedad]

Hi, 

     Best wishes for your current treatment. 

I've had a radical prostatectomy followed by radiation of the bed the prostate with adjuvent and neoadjuvent hormone treatment (Zoladex implants for 12 months ) followed, when my PSA began to rise again, by intermittent Lucrin with it's very unpleasant (for me) side effects so you have my sympathies for your treatment.

One thing you might consider is boosting your immune system ... Besides using the Mediterranean diet I have used Astragalon 8 for some years and feel that it probably provides some good help. It was tested in a respected large-scale double blind study in a large Japanese hospital and those who were treated with the Astragalon 8 (whatever their disease/treatment) recovered much more quickly than the control group which was given a placebo. It's use has been long term in Japan and China. 

It comes in liquid form and I take it with water each morning. Recently a capsule form has arrived on the market but I don't know whether  careful tests have been done on the efficacy of the capsules as opposed to the liquid form which is the traditional.

Cheers, Aussiedad - 75 not out!

p.s. Your treatment was on my birthday!!!

p.p.s Recently had PSMA Gallium scan which picks up down to approximately 1-2 mm which is far better than previous scans such as the Choline based which was only used for about 6 months. The development in scans is progressing very rapidly.

p.p.s. Look for an excellent talk on advanced prostate cancer by Associate Professor Henry Woo of the University of Sydney who mentions a small study by Professor Emmett of St Vincent's Hospital in Sydney - you will find it on YouTube. (Be sure it it the talk on the Gallium 68 because Professor Woo has another earlier talk which covers use of the Choline one.

[CERICWIN in reply to Aussiedad]

Thank you for your reply.       I tried a mainly plant-based diet, but I've lost so much weight and strength that I must have food that's more densely packed with nutrition.      And the side effects of the Lupron and Xtandi were very hard on me.       Most guys gain weight on hormone therapy, but I have a weird metabolism, and have to force myself to eat to maintain even 125 pounds.      

Eric

[lyrikos in reply to CERICWIN]

You are a warrior Eric...in my book you are...keep this spirit....

Nick

[CERICWIN in reply to lyrikos]

Zapping the prostate with radiation has given me more of a sense of fighting, so I finally can accept completely accept being called a warrior.        But a true warrior volunteers to fight, and I had this role forced on me, the only option open to me.

But thank you, it does take some determination to stay the course and deal with the adversity.

Eric

[Aussiedad in reply to CERICWIN]

Hi Eric,

       The Mediterranean diet isn't just plant food but you might try highly rated omega fish meals at least three times a week together with lean beef meals rounded out with white meat (chicken etc.) for a number of meals and you should be getting the protein that you need to build muscle (and weight). The hormone treatments rapidly reduce muscle bulk so do make sure you have a reasonable amount of resistance exercise and if you have protein after you exercise you will build muscle. Muscle builders and weight lifters have a protein powder in milk after their exercise to build muscles.

Cheers, Aussiedad

[Aussiedad]

A further point ... When it was proposed that I have radiation treatment after the radical prostatectomy I asked for adjuvant and neoadjuvent hormone treatment and was told that was done when the radiation treatment fails. The radio oncologist agreed, did studies and now it is the normal treatment. Do keep on with the hormone treatment and any complementary treatment suggested.

You might also investigate the various trials being done to see if you can join an appropriate one. I feel that these trials may give one the jump on conventional treatment which you would continue with in any case.

Cheers

[CERICWIN in reply to Aussiedad]

My radiation treatments are palliative, and I've been under palliative care since August, 2014.          I'm on Xtandi, Xgeva and Avodart, and a lot of other meds for various bodily functions and pain, since nothing works normally anymore.

Eric

[durango]

I wish you well with your in fight against our common enemy  I went to see the consultant Thursday he wants me to have a bone scan which he has booked for me I have to phone back Monday I,m not looking forward to it but what can we do I have started to take my Tamsulosin in the evenings instead of after the first meal of the day it has started to let me go to the toilet less during the night I can be up 6 to 8 times a night and pass very little water each time but the first time I did this last Wednesday evening I passed 300 mill in one go I haven't passed that much water in one go in a long while  and I am down to 4 to 5 times a night as of tonight I am going to take notes of the times and volume and I must cut down on when I have my last drink of the day by the way he said my options are to self catherter of have a permanent catherter  in place  or have a turps operation nice choices I have to say  anyone got any advice I have tried the self catherter  I just cant do it best regards Dave .

[Blasterbob in reply to durango]

Dave, we are all different and having to make a choice between a catheter or have a TURBT, for me/myself, I personally would have the TURBT.  I make this choice since I had the TURBT last week and that procedure itself was no big deal when I compare it with having to wear the catheter for a week -  that will be removed in just two more days.  Easy choice for me but others may see it in a totally different manner. 

[CERICWIN in reply to Blasterbob]

I tried tamsulosin, but it didn't work for me.      I read about Cialis being the only ED drug prescribed and approved for symptoms such as urinary difficulties, and i've been on it for several years, now. 

Do you have a lot of pain with catheterization?      I'd rather avoid the Turp or any surgery, if possible, and I'm hoping that the radiation will resolve pain and urinary problems.

CERICWIN

[Blasterbob in reply to CERICWIN]

For ME, no real pain associated with wearing a catheter just a slight pain (meaning more of an inconvenience) moving a hose around and sleeping or attempting to sleep with a hose and bag attached to you.  If I have to sleep with a bag, I much prefer it to be my wife...Ha ha..

[Aussiedad]

Hi Eric,

       Thanks for your reply. You have certainly had a lot on your plate and thanks for sharing your story. With the extreme fatigue I get from the various treatments I've found that besides the palliative treatments I have each day I use a cold press juicer with four Granny Smith apples (only Granny Smith's will do), a couple of carrots, a stick of celery (no leaves), a chunk of raw Beetroot, a half inch of fresh ginger all kept cold on the fridge and drink the lot - within 5 minutes you'll have a surge of energy. Juice the lot, skins seeds and all! Everyone I have had try this tells me it works and they get a boost. Give it a try.

Let us know how you go and try to maintain a positive outlook.

Cheers

[maack1]

I always support the glass half full approach that shows optimism rather than pessimism.  This approach gives us strength and encouragement to plug ahead despite the odds that are trying to drag us down.  You have been an inspiration to me, Eric and I always enjoy our personal exchanges.  Love the photo!

[bhammel]

Go friend! My motto has been and will be KCA...  Kick cancer's ass!

[Jonlaco]

Eric: First of all that is a great picture you posted, looking very good.  Yes, you are a warrior and must keep on fighting whatever is thrown your way.....

[CERICWIN]

Thank you Chuck, Jonlaco, and everyone.       The picture is of my physical therapist and myself last year.        She was expecting a baby girl---7 months pregnant.

Eric

[Ladysingstheblues]

You are a warrior!  I don't post much, but read a lot. My husband  has Stage 4 also.  He has had it for 4 years. Diagnosed at 55. It's in his bones etc. It totally suck.... I foolow all of you strong men.  Prayers to all of you.

[CERICWIN in reply to Ladysingstheblues]

Hi Ladysingsthe blues,

             You are also a warrior!      You fight this disease, alongside of your husband.       And I'll bet that you never thought of yourself as a warrior, but you are indeed, fighting alongside your husband.       I'm alone, but I know what you are going through, too.       I was diagnosed at 64, but I am so sad for the younger guys who are hit by it in the prime of life.

             And you are a loving, caring, kind and compassionate lady---your words shine through.     

           My best wishes, thoughts and prayers are with both of you.

           Eric

           

           

[Ladysingstheblues in reply to CERICWIN]

Hugs

[charmander]

Warrior:  a person engaged in some struggle or conflict.  Used in a sentence:  A program of tough training and discipline that turns untried civilians into warriors. Ahem...that's you brother.

You are the strongest man I know!! I sit around worrying and fretting about my future and planning ways for an early demise.  You on the other hand always have your head up and your eyes on the horizon.  You  are not fazed by the pebbles beneath your feet while you keep walking one foot in front of the other.

Thank you for modeling being a warrior.  I  hope to be you some day.  Love you brother.

[CERICWIN]

charmander, thank you.      I guess that you are right by definition, but I'm not ashamed to say that I have times when I falter, when depression and self-pity can get the best of me temporarily, which is inevitable and excusable in view of the hormornal disruptions.          

The pain doesn't even matter that much, it's just feeling so very ill at times and worrying about becoming totally disabled.       I live alone, with a paid caregiver who comes in four times per week to assist with shopping, laundry, cleaning and escorting me to medical appointments, and I'm trying to get him for five days per week, as I've deteriorated a little, and also have my treatments five days per week at present.

I guess that I'm just like an old Timex watch that "takes a lickin' and keeps on tickin' "

Eric

[erjlg3]

Hi Eric, I'm still not so sure how to write to you besides privately on here.  I'm not sure if I'm to start a new post or find a previous message and start from there.  I'm hoping you are doing better than you were yesterday and the doctor was able to help you and figure out what is going on.  Thinking about you my friend. 

Hugs,

Jackie

[CERICWIN in reply to erjlg3]

If there is a private messaging feature on Health Unlocked, it's pretty well hidden,    I haven't found it yet.  

But, Jackie, after a miserable weekend and a totally disastrous Monday, everything's better today, it went as smooth as silk.       I had some kind of odd skin infection, and my medonc prescribed a topical antibiotic and a steroid, which knocked it down immediately.      I even got my radiation treatment early, having missed the one on Monday because the machine was broken again.

And between appointments, there was an indoor cafe, styled like a sidewalk cafe in the hospital, where I bought a salmon salad, which was outstanding, fresh and crisp and with everything in it.      

How are you and Elgie?     I hope that both of you are okay and feeling well. 

Are you having a problem with your phone?  You haven't texted me lately, and is your computer working okay?   

     Eric

[Darryl Partner in reply to CERICWIN]

For private messaging, click on the persons name and write them a message

[CERICWIN in reply to Darryl]

Thank you, Darryl, for your quick response.     It's so simple.     But I'm not sure if others can read my full profile, I tried to make it public, and hope that it's available.    It is tiring to try to write everything all over again when replying and to clarify my situation to others.

And, Darryl, how are you doing?     I haven't read anything about your own PCa in a long time.

Eric

[Darryl Partner in reply to CERICWIN]

Hi Eric   I just looked at your full profile...everyone who wants to, can read it.   I'm doing fine, health wise, nothing new to report.  Just a bit sleep deprived from long work hours :>(   Thanks for asking!

[erjlg3 in reply to CERICWIN]

Oh I'm so glad things went smoother for you yesterday!  I felt so very bad for your predicament and the pain and suffering you were going through. 

The café sounds lovely for a hospital.  Elgie's Cancer Institute has a lovely outside garden area to eat and their food is pretty good also. 

We are doing well for the most part.  Elgie has been quite a grumpy pants for the last 3 days but this too shall pass   Other than that we are both doing well. My Son is coming to babysit our furry (daughter).  Her anxiety is so bad that we haven't been able to leave the house alone together for a few months.  So today we will have 3 hours of out time together.  lol. 

I am having phone and pc issues still.  I tried to private message you my temporary cell number.  I will try again today from Darryl's help of his post.  We have exhausted issues with the cable/wi fi/ company.  They said the issues are not on there end after replacing a gazillion wires  boxes etc. 

I hope today went well also and I so much hope that your skin infection is subsiding even more. 

Such a gloriously beautiful day for Elgie and I to go do something for a few hours  

Talk soon my friend.  

Sincerely,

Jackie

[erjlg3]

Thank you Darryl.  If we are starting a new conversation with someone and there are other topics, should we start a new topic or continue with an old one?  Will the person get the new topic as a notification?  If not, how should we make the new topic get to a certain person? 

Thanks again.

Jackie

[Darryl Partner in reply to erjlg3]

Hi Jackie:

If you are conversing with one person, then simply continue your conversation using the reply button.

If you are starting a conversation on a new topic that might be of interest to the entire community, then please use the "write a post" button.

We will soon have a way that will allow you to direct topics to the attention a particular person, using @name   You can try that now...it might actually be working today  erjlg3  

[erjlg3 in reply to Darryl]

Thank you Darryl