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

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Octorobo
Regular Member
Joined : May 2009
Posts : 437
Posted 5/21/2014 8:23 PM (GMT -8)
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
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Dreamer44
Regular Member
Joined : Jul 2013
Posts : 199
Posted 5/21/2014 9:43 PM (GMT -8)
Hi Susan. Radsgrrl,
Understand how you feel as you face each new day knowing that it may be more challenging than the day before. If you want to talk, my email is open. Ill reply with phone number.
Pat
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nhwife
Veteran Member
Joined : Mar 2012
Posts : 723
Posted 5/22/2014 1:28 AM (GMT -8)
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.
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enjoylife
Regular Member
Joined : Sep 2013
Posts : 151
Posted 5/22/2014 11:41 AM (GMT -8)
Susan, (radsgrrl22), I would be more than happy to start a chat room. That is a great idea and if you know where to begin just let me know. We need to connect.

Nhwife, Thanks for joining Pat in offering words of wisdom and comfort and reaching out to us. It means so much.

Pat (Dreamer44), You have always been an inspiration to me and others here and I thank you for taking the time.

Octorobo (David), it is so nice hearing from you and your heartfelt appreciation of all of us that has been on this journey. Thank you.

We continue!

Hugs to all,
Cathy (enjoylife)
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myeverything
New Member
Joined : Nov 2013
Posts : 17
Posted 5/25/2014 8:51 AM (GMT -8)
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.
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nhwife
Veteran Member
Joined : Mar 2012
Posts : 723
Posted 5/26/2014 5:44 AM (GMT -8)
Please hold Zimac (Chris) in your thoughts and prayers as she lost her Bob on Friday, May 23. That was a fight that pulled no punches - she and Bob fought long and hard. So saddened to see another go so early.
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kukukajoo
Veteran Member
Joined : May 2014
Posts : 619
Posted 5/26/2014 6:34 AM (GMT -8)
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.
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Dreamer44
Regular Member
Joined : Jul 2013
Posts : 199
Posted 5/26/2014 5:12 PM (GMT -8)
Sad to know another warrior has been called home. Bob fought his battle to the end. We, who have walked a new road ahead of Chris, will be there for her as we were during the last months of their journey. This loss brought back so many memories, and how this disease takes everything.....everything! from these warriors.

Pat
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radsgrrl22
Regular Member
Joined : Nov 2012
Posts : 112
Posted 5/26/2014 5:28 PM (GMT -8)
So sad to hear. My thoughts and prayers are with you, Chris and Bob.


Susan
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enjoylife
Regular Member
Joined : Sep 2013
Posts : 151
Posted 5/26/2014 7:09 PM (GMT -8)
I am so sorry to hear that. My prayers to you Zimac and your family.
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Beejane
Regular Member
Joined : Aug 2012
Posts : 150
Posted 5/28/2014 4:44 AM (GMT -8)
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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redheadskier
Regular Member
Joined : Feb 2014
Posts : 215
Posted 5/28/2014 6:11 AM (GMT -8)
Chris,

Know that you will be in my thoughts...

Lisa
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MsWorryWart
Veteran Member
Joined : Aug 2011
Posts : 1466
Posted 5/28/2014 9:58 AM (GMT -8)
Chris,

You and yours are in our thoughts and prayers.

God Bless.....
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smo1
Regular Member
Joined : Jan 2013
Posts : 147
Posted 5/28/2014 5:22 PM (GMT -8)
Two more of our wonderful warriors! So sad for both of you ladies and your families! This is a monster disease. You will be in my prayers.

I haven't been coming here much. Guess it just got too hard. My own husband is now into month 20 of his Xtandi. He is doing very well and it is hard to say that when others are grieving and feeling so terribly.

Just wanted to say I am thinking of all of you and wanted you to know you are daily in my thoughts even if I say nothing!
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radsgrrl22
Regular Member
Joined : Nov 2012
Posts : 112
Posted 6/3/2014 4:26 AM (GMT -8)
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
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Gizzy'n me
Veteran Member
Joined : Jun 2013
Posts : 1870
Posted 6/3/2014 7:22 AM (GMT -8)
Dropping PSA numbers is always good.

   Congrats on the Zytiga. My experiences with Zytiga did include a weight loss of about 40-pounds - or close to 20%! That is when I discovered "Ben & Jerrys" ice cream!!!! It helped to keep the weight loss down. Would also suggest taking Ensure also.

   The Prednisone does funny things to us. For me - I get bruised just when my dog looks at me! My arms have all kinds of marks on them.

   The combination of chemo and prednisone had weakened my legs to a point of having difficulty walking up the stairs. After 5-weeks of excercising the quads specifically (front of legs just above the knee) .... I have become a lot more stable on my feet while walking.

   Hope everything stays positive.

Rob & Gizmo

 

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enjoylife
Regular Member
Joined : Sep 2013
Posts : 151
Posted 6/5/2014 9:26 AM (GMT -8)
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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Dreamer44
Regular Member
Joined : Jul 2013
Posts : 199
Posted 6/14/2014 4:01 PM (GMT -8)
I have not been visiting HW often in the last few weeks. As time moves on, the caregivers who have lost their loves move on. So many newly diagnosed who are overwhelmed not only by the diagnosis but by the choices available and the information overload.! None of us wanted to be here sharing our best and worst. I truly believe that the support from HW members helped me survive those dark days. The HW family provided links to the latest treatments, thoughts on the best care, always here with answers to sometimes bizarre questions and situations. This family makes each if us stronger to fight on one more day.

I hope the Caregiver thread will continue, perhaps changing the title to simply Caregivers Corner. Unfortunately, there will be new members finding themselves with partners with advanced PC. Having a place to vent, to unload, to offer hope and solace while partners struggle to survive is critical for our journeys. In memory of the guys who have passed on and their partners who walked the road with them to the last breath, to the moderators, and all of the members who are HW, Thank You.
Dreamer 44. Pat
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Aimzee
Veteran Member
Joined : May 2010
Posts : 1413
Posted 6/18/2014 2:47 AM (GMT -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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radsgrrl22
Regular Member
Joined : Nov 2012
Posts : 112
Posted 7/1/2014 4:30 AM (GMT -8)
Update on my husband Bob:

Well, it's nice to give a somewhat good report. Zytiga and radiation seem to have provided Bob some needed relief! He is walking much better, in considerably less pain, and is gaining some weight back! It has been truly amazing to see. He is having severe mood swings that have been challenging, to say the least. We went and adopted a really sweet dog named Molly, which has provided us something to focus on, aside from us, and started counseling this week.

I am hopeful that we have some time to breathe alittle, and remain more in love with this crazy guy every day.

Susan
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grandpaof4
Veteran Member
Joined : Apr 2013
Posts : 805
Posted 7/1/2014 1:50 PM (GMT -8)
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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radsgrrl22
Regular Member
Joined : Nov 2012
Posts : 112
Posted 7/5/2014 11:25 AM (GMT -8)
Dave,

Thanks for your reply. One day at a time is the mantra. We started counseling last week just to give us guidance. This disease is a tricky thing. As Bob has gotten better, and less on the pain meds, he is more aware of what he has been missing. Depression has reared it's ugly head, which I wasn't prepared for. (Wait you are feeling better, why are you depressed?) Apparently this is a common thing to happen, and it was helpful to hear why. So we are trying to communicate better, and increasing the activities we enjoy and were not able to do so much such as dining with friends, going to movies and SNUGGLING without pain. turn

We are not sure how long this will last, but his acupuncturist is also saying he is stronger, and we continue with the Zytiga, Pred, and Eligard.

My heart and best wishes to our fellow warriors and warriorettes.

Susan
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enjoylife
Regular Member
Joined : Sep 2013
Posts : 151
Posted 7/9/2014 9:25 AM (GMT -8)
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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tednsal
Regular Member
Joined : Sep 2012
Posts : 281
Posted 7/9/2014 9:52 AM (GMT -8)
Well the oncologist agrees with us about stopping the Jevtana, so no treatment today, just lab's.
Xgeva and bone scan scheduled for 16th and CT the following day, with a follow up with doctor on the 23rd. He advised that he did not think that Vanderbilt had any clinical trails going for prostate cancer and explained the Phases' of a a clinical trial. Phase 1 & 2 do not sound like something that Ted would need to be involved in, to experimental, so Phase 3 would be the only one we would even consider. Not that we feel we are better than the folks who go into those Phases', but the quality of life issues are what is directing us at this time.

So we will be in a "holding pattern" until follow up with oncologist on the 23rd, but we pretty much kinda know what the final outcome(s) will be for us.
No signature again...PSA 73.75 I think they might have done another one today....will see later.....

As a caregiver, I feel helpless and do not feel that I should give Ted my opinion's because I do not want to sway him in any way, I want him to "make the call" and not me.
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Haliday
Regular Member
Joined : Sep 2013
Posts : 115
Posted 7/10/2014 8:37 PM (GMT -8)
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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