Caregivers Corner, Treatments for Advanced Disease, Results, Side Effects, etc. (Part 4)

Good evening Caregivers

My thoughts and prayers are directed your way tonight here in Houston Tx. You and your loved ones are not alone. I am sure the days are long and the nights even longer. I hope that tonight the pain is lessened, the rest is refreshing, and the morning will be turned into dancing! In reality I hope tomorrow will be better than today and there might even be laughter, even for a moment. May the God who named the stars call you by name and encourage you and lighten your load as you face the challenges of the moment.
Blessings
David

I join Pat in being available by email and then phone if anyone needs to talk. We are here for you, having walked your path just moments ago...it feels like that sometimes.

Good morning everyone,

I sure appreciate being able to come to this site and see the conversation among you that have traveled this road so long, together. I do get a sense of peace and comfort.

I thought I would update you on our journey.

As you know, the Numb-Chin Syndrome was our last big event. Though he wanted to believe it was teeth, a virus, bacteria (and I had to let him figure this out for himself) we have come to the agreement, it is probably bone mets and actually had an MRI last tues.

NCS comes with a lot of pain and it has helped us to move forward. We had an epiphany on 5/4 about our diet. I'm almost embarrased to say, because we have nutritional backgrounds, we had gotten so far away from what we know and believe about what to eat. I do believe, "we are what we eat".

We made a committment to go to the basics: raw/vegan/low-glycemic/no meat or dairy, etc. And, has anyone heard about 'amino-acid restriction diet' for cancer? We're doing that, too. Believe me, it is very restrictive but we are noticing immediate changes. We call it the 'water and celery' diet. We can eat most vegetables, rice, fruit but no nuts/fish/grains/legumes. We are really going for the starve-the-cancer-cells so we are really restrictive.

My research finds: no vite B6, restrict glutamic acid/methione/tryptophane, etc. It seems cancer cells use the amino acids for their energy especially the glutamic acid. I spend hours doing research but believe we're on to something.

It's been 3 weeks and he has lost a good 15 lbs and we're aiming for 50 more. He is built like a football player so he is big but solid, not sloppy. He doesn't have high BP but we know the weight loss can only be good.

But, the amazing change is with the NCS. The pain is definitely reduced and he's not taking near as much pain medication as before. Yes, we're only 3 weeks into it but just those little changes give us hope. That's all we're hoping for, remission.

We had a blood-test before the MRI and will report that PSA # and MRI results next time. It was 400+ last time.

Best wishes to all and thank you so much for sharing your stories. Though I don't know you, I get comfort coming here, sharing.

You got it NHwife, they are in my prayers.

Wanted to also thank everyone for being here for support. Very new to this and so much to take in all at once.

Where in NH are you NHwife? I just moved to GA from there (which is where I grew up). Was just up at PSU for my youngest daughters graduation at PSU but she is staying on for her masters.

So sad to hear. My thoughts and prayers are with you, Chris and Bob.


Susan

It is so sad to see that littlem and Zimac both lost their spouses in such a short time. I am so sorry.

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Husband 68
PSA 19, 12 cores all positive
RP July 2012, Gleason 7 (4+3), 8, pt3b
EPE+,PIN+, SVI+, margins-
Oct./12 PSA .04
Radiation completed Jan/13
After radiation PSA .01
April/13 PSA .01
Aug/13 PSA .01
Feb/13 PSA .01

Chris,

You and yours are in our thoughts and prayers.

God Bless.....

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Husband DX 49 Yrs Old - T4,N1,M0
07/11 - PSA 57.0 - BX -7 /11 cores positive - all 80% -G7 (4+3)
8/4/11 - MDA-G8 - 3 Positive LN, SV, & Bladder - BS Clear
8/12 - Degarelix & Casodex
9/8-1st Lupron
01/12 - Taxotere 3 Cycles
01/12 -PSA .1
06/12 IMRT
09/12 - Zytiga
12/12 - PSA .02!
03/13 - PSA .07
11/13 - PSA .01
02/14 - PSA .015


LIVING LIFE ABOVE CANCER!
HOPE FLOATS & LAUGHTER RULES!

Well, good news to report. After on month of Zytiga, my partner's PSA is down 300 points! Not much time to celebrate though, as he has been falling a lot lately, the last time, 1 hour after we got the news. My nerves are frayed, as are his. Not getting a lot of sleep. I think the prednisone is agitating him on top of confusion from the meds. He does seem stronger, although his weight is still very low.

Susan

Susan, (radsgrrl)

That is great that the Zytiga is working. My husband had excellent results on it and it worked for 18 months. It is so interesting how some drugs work on different people.

We are going through a scary unknown period right now as my husband will start a double blind trial. I tell you it sure tests a person's patience to say the least.

Best to all,
Cathy

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Husband 58,dx 2005 psa 27, bone mets, lupron
spine mets, 2011 paralyzed due to spinal cord compression, vertebrae removed
radiation, two compression surgeries 2010/11, rehab walk with aid
after taxotere psa 161, 2011,
start zytiga, 2012, psa 11, psa 44,start xtandi 7/13,
mets spine,ribs,lungs,bladder,liver.
stop xtandi psa 16, start jevtana after 1round psa 25.5, after 2 psa 40.8.

Sorry to be late with my condolences, Pat. May God continue to comfort you. My brother recently died (of cancer) and there is comfort in photographs, Facebook, and the like. Take care of yourself. God bless you!

Aimzee

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Husband Ron, age 63
4/1/10 PSA 5.5 Prostate size = 50 grams
Biopsy on 4/20/10 12 samples. Adenocarcinoma: 3 positive cores on right side-No Perineural Invasion Gleason 6 (3+3) Bone Scan/CT Negative 8/18/10 - Da Vinci Prostatectomy. Post Op: Gleason 7 (3+4) Negative surgical margins & lymph nodes. Both nerve bundles spared. No incontinence; ED a problem. 2/13 PSA 0.01

Susan,

I'm so happy for you and Bob. So glad the treatments are working for the both of you.

As I say, taking it one day at a time.

Dave in Bartlett, TN

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DOB: 10-28-1950; 1-21-2011 retired-St. Jude Hos, 9-12-12: PC 4X enlarged DX: 10-1-2012, PSA 128; G-9; High Vol. stage 4 PCa; 10-2-12, BS-Mets-right skull to knees!
10-01-12, Bicualtamide 50 mg, daily & monthly inject.-Firmagon/Xgeva;PSA 0.2 3/13; 7/13 PSA .06; 9/13, PSA 0.05, 10/13, 12/13, 02/14; T=3; 10-23-13, 10 round spot Rad;11-6-13, Surgery on T12-Kyphoplasty; 3-21-14, nerve block-Lower back

Hi all,

Update: Monday, we saw the urologist who has known my husband since he was diagnosed with PC and mets. He looked at the latest cat scan and made comparison from the last one taken in April while he was in the hospital which showed tumor progression in the bladder and the lungs. His PSA is now 227 and doctor told him if the Xtandi does not work, the prognosis is 6 months or less. It was not a good day. Next week he will have another PSA and blood work done to see if the Xtandi is working. It may take awhile to kick in. At least his appetite is good and he is getting around.

Pat (Dreamer), if you’re reading, I’m just saying hello.

Hugs to all,
Cathy

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Husband 58,dx 2005 psa 27, bone mets, lupron
spine mets, 2011 paralyzed due to spinal cord compression, vertebrae removed
radiation, two compress surgeries 2010/11, rehab
after taxotere psa 161, 2011,
start zytiga, 2012, psa 11, psa 44,start xtandi 7/13,
mets spine,ribs,lungs,bladder,liver.
stop xtandi psa 16, start jevtana psa climbed 120.4,stop
PSA 227, 7/2014 Start Xtandi

Sal--when it is decision time, you will find the words and ways to share your thoughts. And ,yes, I agree in the end, it is his decision. So hard to know what to do.

Cathy,
So sad to hear your news. We are still in the calm before the storm. Keep us in the loop. Do something fun, go to someplace special, if you can. Keep us in the loop
Margot

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b 1948 (spouse)
DX 8/23/13 Tc1
PSA 8/13. 147, then 103, Oct 105,
Bone scan inconclusive CT scans neg
DRE neg
prostate 54 grams
8 of 12 cores positive, G7 21% involvement
9/26 ultrasound, anterior tumor "hiding"
PetScan and MRI 1 cm lesion on sacrum
12/15/13 started Casodex
1/15/14 PSA dropped to 39
1/22/14 Lupron Depot 22.5, 5 mg daily Cialis
4/14/14 PSA dropped to .1. Yay 7/8/14 <.01