HealingWell
Search Close Search
☰

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

Support Forums
>
Prostate Cancer
✚ New Topic locked
1 2 3 45 6 7 8 9 10
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 7/11/2014 5:44 PM (GMT 0)
Haliday, Thanks so much for your kind words. Sometimes we caregivers feel like we are treading water and any encouraging words are appreciated.

Special thanks to Pat (Dreamer).

I’ll try and post after next week’s visit with the Oncologist.

Peace to all,
Cathy
Posted 7/23/2014 3:10 AM (GMT 0)
Haven't posted in awhile due to several situations that arose after thinking that the PSA was rising....
Ted had radiation due to the lymph nodes being involved with his PC. The radiation was not as "pin pointed" in 2000 as it is today, so Ted has scar tissue which causes him a lot of difficulty (blockage) every so often. He has had a cystoscopy a few years ago to open up that area, well it seems that this same thing happened again. We were scheduled to go on our "family" vacation to HHI but this "popped up and Ted had to have a Foley catheter inserted so he could void. This procedure went without any problems, but Ted thought that he was totally blocked and the Foley wouldn't be able to be inserted. The staff at the current urologist are amazing, kind, gentle and considerate of Ted's concerns, and they told him to go on to our family vacation. So we did. Ted was a real "trouper", and he went. He could't do much but sit around. When we got back home from vacation, we went that Monday to the urologist to have the Foley removed, since we were going to see the oncologist the following Wednesday, we thought that we would have the urologist go ahead and do a PSA, so we would have the "numbers" to talk about continuing the Jevtana. The PSA was 73.75 (07/07/2014) ....way up from the previous one on 06/11/2014 of 55.25. So we were very disheartened and felt that we had arrived at the end and next would be clinical trials. Oncologist said let's do a CT and bone scan to find out where we were with the cancer, we agreed, since it had been six months since the last ones were done. We did have labs drawn on this visit (07/09/2014) and discussed with the oncologist the possibility of another avenue of treatment.

But wait, I look online that night and the PSA that was drawn that morning was 47.16. Well that sure is a difference. E-mailed doctor about this and his response was that the 73.75 could have been a "bad read" due to the removal of the Foley catheter. Suggested that we go ahead and do the scans and lets review the results and decide what our options would be.

Ted has been having chills and night sweats the last couple of weeks and walking around with his fleece bathrobe, lose of appetite, feeling fatigued and down right yucky. Urologist and oncologist thought maybe UTI, took urine sample for culture. Sent a prescription for five days of an antibiotic. T hat seemed to help with the night sweats, still cold and fatigued.

So tomorrow is almost here and I am worried and afraid that the scans will prove that the cancer is spreading and winning the battle. I can see a big difference in Ted, his body language, how he walks, eats, activity levels, he's starting to have a little more pain and he just seems so wore out sometimes. I on the other hand am wore out as well.......trying so hard to always be "up".....and really feeling so down.....will post tomorrow as to what we may or may not do....

No signature again.......will post this same message on "My journey with Jevtana" thread......

Rob......Good Luck....and to all of you PC warriors and caregivers......Peace, love and hope...
Posted 7/23/2014 4:27 PM (GMT 0)
If anyone has a spare minute you might drop by Tammy's thread (spicyt). I'm not sure how much help we can give her but she seems like she could use some company.

end stage with bone mets. kidney failure

--PeterDA
Posted 7/23/2014 5:41 PM (GMT 0)
Peter, I just did. Thanks!
Posted 7/27/2014 4:36 AM (GMT 0)
The latest news was not good. Wednesday's oncologist visit confirmed that the cancer has progressed dramatically and has invaded more area's within Ted's skeleton. Ted has had all prescribed treatments available and up to this point was utilizing their benefits, but as his disease increased, the treatments started to fail with "holding off" the cancer's progression. We have been very skeptical of Vanderbilt and this oncologist ever since "day one". He seems to have "distanced" himself and has somewhat of a "matter of fact" attitude. He did not suggest a clinical trial because at this point, Vanderbilt is not involved with any for prostate cancer. We had mentioned to him previously that we would check other resources regarding the possibility of Ted being included in a clinical trial at another facility and he agreed with that option. We started a process to change health care providers and facilities to expedite the possibility of further treatment, such as a clinical trial (appointment is August 7th). If Ted can not "fit" into any clinical trials, he will slowly become more fatigued, and his bones will become more compromised with the tumor's progression. Everyone, even his oncologist says he is not the "spiting image" of a Stage 4 cancer patient, Thank God! Ted's is still very mobile and maintains his usual daily routine of getting up at the crack of dawn, going upstairs to paint a canvass every now and then, and trying to be "Papa" to the grand kids. However, he is experiencing pain in several new areas, and medication dosage have been increased. Sleeping habits are that of a farmer's, as the sun goes down, he's usually ready for bed as well (sometimes as early as 6). His eating habit's are what have changed the most, he has lost about 20 pounds since February of this year, he say's some of his favorite foods just "don't taste the same". We haven't had many visitors since we have moved to Tennessee, and we have not been able to be as hospitable since Ted's health has been constantly changing and we have had to adapt to a different lifestyle as well.

So that is where we are as of now, waiting for the inevitable. A couple days of crying and now we have to dust ourselves off and live for each day that we have been blessed to have survived through. We requested medical records to be sent to the new oncologist twice from Vanderbilt, I physically went to the medical information services (this is their new name) and hand delivered the request, then I also called two days later to see of these had been pulled or not. Was advised that "Pam" would call me back to confirm, never heard a word. Figures! Previous oncologist office was called and they called back to confirm that they will send me the medical records and disc's if available. What a difference between these two facilities.

Peace, love and Hope to all ......
Posted 7/27/2014 5:45 AM (GMT 0)
tednsal,

I hope they find a suitable trial for Ted...

Keeping all in thoughts and prayers.
Posted 8/4/2014 12:04 PM (GMT 0)
All,
Less frequently checking in on HW, but following a few very late stage posts. Update on living life almost 5 months later. I am traveling in Poland, Mark's country of birth, for a few weeks. Some of his ashes have been scattered where he wished and knowing that I could give him this one special request has given me an immense feeling of peace. The bonus to making this trip has been the support, kindness, and love that I am receiving from my Polish family. After using my energy and love to support Mark in his last months and days, his family has put their lives on hold, managed work time to be available, opened their homes with unbelievable hospitality, and spread their arms to embrace me as they would a blood relative. I am getting back more than 100%. I am truly feeling renewal, like one may after a religious retreat. I am crossing the bridge in the grieving process and believe I will return to the US more at peace and more hopeful and open to whatever life holds for me in the future.
While I remember how difficult Marks last weeks were, I know that part of my life has a place in my memory. This trip has opened doors to building new memories and relationships that will be with me all the days of my life.
I hope my words will encourage other caregivers who come to the end of the pc journey with their special Loves to hope, believe, and continue to walk onward with the strength and courage that brought them this far.
I continue to be a Dreamer (44)
Pat
Posted 8/4/2014 12:35 PM (GMT 0)
Just dropped by to turn on the bat-signal for another caregiver who could use some support. New member 1one1 is looking for tips for managing his/her dad who, from the sound of it, is in some sort of Bosnian version of hospice care. (S)he is looking for tips on pain from mets to ribs, bedsores, and drugs that might help if (s)he could find a way to get them to his/her dad.

1one1's thread is here:
www.healingwell.com/community/default.aspx?f=35&m=3145474&p=1

Pat,

Glad you trip to Poland is helping. A change of locale helps put things in perspective as does widening ones pool of connectedness to other people.
Posted 8/4/2014 9:49 PM (GMT 0)
Pat, (Dreamer 44)
I am so happy that you posted to keep us updated on things. What a wonderful experience you are having with Mark’s family in Poland. This must bring great peace to you. You will bring back many memories and leave some there.

Sally, (Tednsal)
Hope you’re doing okay. I read all of your posts.

Rob, (Gizzynme)
Keep us updated on your new chemo treatment. You are an inspiration to say the least.

I’ll be posting an update later next week after his appointment with the Oncologist. He is stable right now which is great.

Hugs to all,
Cathy
Posted 8/7/2014 7:12 PM (GMT 0)
Pat,
What a beautiful post to read.
Thanks for the update and know that we keep you in thoughts.
Posted 8/8/2014 9:22 AM (GMT 0)
Pat (Dreamer) your post was very inspiring. All four of my Grandparents were born in Poland. I remember in school, I would always choose Poland as my country to explore and report. You seem to be obtaining a certain level of peace over Mark's passing. Please take care!

Aimzee
Posted 8/9/2014 1:32 PM (GMT 0)
Dear Dreamer 44,

My eyes are welling up as I type this.Thanks for sharing your post. It's very encouraging to know that there are partners out there who cared enough to carry on with the wishes of their loved ones, and that by doing so, you have honored a relationship that has opened new doors to new experiences. It helps bring some peace to my topsy turvy life.
Posted 8/10/2014 3:59 PM (GMT 0)
We (Ted & I) are in a "better place" today, than we have been in quite awhile. Doom and gloom was what we surmised we could expect to be in store for us. After the Vanderbilt doctor advised that he has nothing more for us and that we could try another doctor or facility, we were a little upset. In other words, his meaning was " go home to die". Every problem that Ted had, he said was related to Ted's cancer, fatigue, night sweats, cold chills, pain, etc. I looked at Ted's labs and asked about his blood & iron counts, he said, oh, he's just a little anemic, and "brushed" it off. He suggested a high dosage of the Lortab or morphine. Well Ted heard the word morphine and that meant to him, that he was on death's door. As I said before there was a couple of other possibilities (Radium 223/Xofigo) that could be utilized for Ted, but Vanderbilt doesn't "step out of the box"....so that was a "no go". Vanderbilt doctor did not want to handle or control any other possible issues or symptoms that have "popped up", wanted us to go to your PCP or other specialist's for those problems. So you are running here and there and everywhere and feeling like $%%, just wanting to be home in your bed or recliner, but no...."I don't handle those issues you have to go to"...whoever....

Anyhow, another oncologist....off we go......finally after multiple phone calls to Vanderbilt medical records, oncologist nurse and any other person who could help, the records were sent to new oncologist. In the interim, Ted went to his PCP and we asked for as many tests to be completed as possible, to see where these night sweat and chills were coming from. Had some of the results and took them with us to the new oncologist. Immediately she saw where Ted's iron was way, way low and set him up for an iron infusion today, with another one for next week, said that he was anemic. I've got to go and get a B Complex for him as well. Setting him up for he Radium 223/Xofigo and possibly combining the Zytiga with the Xofigo (if insurance will pay for it). Said he was the perfect fit for this treatment and that it's not a clinical trail. Anyway, we may not cry for a few days and try to be stronger for awhile. I must admit, that we are very, very disappointed with Vanderbilt and it's "caring" for it's patient's. Patient's and their caregiver's must at all costs, be proactive in researching and "keeping" the right physician, who will utilize the latest and possible "out of the box" treatment's available for the continued life expectancy of that patient.

Added...since writing above: Night sweats and chills have subsided (possibly due to iron infusion and B complex addition)...still no appetite, starting to look very pale and gaunt, very fatigued, pain in back and shoulders and arms (new doctor added an 12 mg additional fentanyl patch for that "breakthrough" pain). PSA is 132, just got that report.(Friday)

Just a word to the wise and those of you who do visit Vanderbilt, be alert and see what's on the horizon for your PC warrior when numbers and problems change.......

We are not out "of the woods yet" and our PC journey may be coming to a close, sooner than we want, but with this new oncologist, we have a little more hope.

No signature....if need to know, look at older postings.........Peace, Hope and Love to all.....

Sal
Posted 9/3/2014 1:57 PM (GMT 0)
Hello All....Have not seen anyone posting on this thread in awhile, really my posting was the last one.

Anyway, my last posting of 08/10/14, we were in a "better place", but not for long I'm afraid. When we met with the new medical oncologist, I had the brochure for Xofigo/Radium223 (which I had for the Vanderbilt oncologist as well, but he just negated any treatment with that medication, saying that they didn't prescribe that treatment regimen & offered morphine prescriptions instead). New oncologist said that was what she was going to recommend and that their office in the Nashville proper area did this treatment, and that Ted was a perfect candidate. He was also very low on iron (we had gone to a PCP and had multiple blood work-up's completed), score was 26, so they gave him an iron infusion that same day and scheduled for another one a week after. The following week, August 14, went back for the second iron infusion, along with his Xgeva and Trelstar injections. Came back home and after a day or two, Ted was in so much pain (arms, shoulders, back), Took his (generic) lortabs every 4 to 6 hours (sometimes sooner), and the pain only eased, no appetite, again eating very little, losing weight (at least a couple of pounds a week), sleeping most of the time, could hardly walk around and getting up and down was getting harder, fatigue was unbelievable. Mentioned to him about how sometimes the Xgeva injection causes joint pain, but he has been on this medication for almost two years and had not experienced any joint pain in awhile, but did when he first started the injections. Well, here we go, all of these symptoms, we are thinking the end is near. Called doctor's office, they suggested to increase the Fentanyl patch to 50, and advised them that he was taking the lortabs about every 4 hours, just to ease the pain (which it did some of the time).

Ted had consultation with the radiation oncologist on the 20th, who would do the injection of Xogifo/Radium 223. Very pleasant and informative visit. Doctor spoke to Ted very specifically, explained everything in great detail, stating that he would have six monthly injections with blood work completed one week prior to injection schedule. Ted and I were aware of all possible side effects, also understood that this medication had a pain reducing element, so we were hoping for the best results. Blood work had been completed prior to this injection visit, so all was a "go" for Thursday, the 28th. Son from Savannah was coming that next day, other son lives here in town, so we were expecting Ted to be in the same "terrible" condition he has been in since the 14th of August for his visit. Ted woke up that next morning Friday with very minimal pain and as of today, taking only taking a few lortabs (not experiencing much pain at all), able to get up and down without so much difficulty, and started eating like a "horse". I believe the Lord has given us our miracle, even if it's for only a few month's.

This is my "tidbit" of news and hoping everyone else is doing "the best that they can". Concerned about Rob (Gizzy'n me). His last posting on "Jevtana and beyond" did not sound good. Wish there was someone in that area (I think Chicago) could help him, I understand that there are not many family members available. He has been such a strong "warrior" and I want him to continue fighting. We've lost so many "warrior's" over these last few years, since I found this site. and I feel that we will continue to do so, until we can find a cure for this disease..............our "warrior's" have so many battles to fight within this disease, it get harder and harder to continue.

Peace, Love and Hope to ALL
Posted 9/3/2014 7:20 PM (GMT 0)
Hello Sal,

I've been following your story for as long as I've been a member (4-2013). I'm glad you've gotten a doctor who can help Ted.

I know you both have been fighting this many years and have had to endure so much along the way. Just keep on "Keeping on" and know God is always right beside you both.

You both are in my thoughts and prayers!!

Dave in Bartlett, TN
Posted 9/4/2014 4:49 AM (GMT 0)
Sal, I still post but not often enough I guess. Just difficult as you know with your journey with Ted. To me it's a roller coaster, one minute one breathes a sigh of relief the next you're in the ER. My hubby is not getting any urine out, he self caths already has a stint in but his kidneys are backing up because the tumor over took his bladder now. Life throws punches, I guess we need to punch back harder.
Posted 9/10/2014 10:55 PM (GMT 0)
Rob {Gizzy'n me) ....I have my ways of keeping up with my fellow PC "warrior" friends........so don't try to hide again, I will find you! LOL!

Yes, I believe it is the cancer that is getting "the best of you" right now. It was really taking Ted down........as I said before, we really were looking at the "grim reaper" straight in his eyes. Ted's new treatment, Xofigo/Radium223 has helped Ted tremendously. His pain has subsided, still having trouble sleeping on his sides, because his arms get to hurting after laying on them for about 30 minutes and of course, the forever ongoing fatigue issue. Appetite better, but he is also taking 2 tablespoons of Megestrol everyday, so it could be that or the new "treatment", whichever it is, I am truly grateful. See if your oncologist can set you up for Xofigo and give you a script for Megestrol (unless you are already taking it).

His breakfast's can range from pop-tarts, to Eggo waffles, to a half bagel with peanut butter (protein), to bologna & egg biscuits, along with some sort of fruit and juice. Depending on what he eats, that when I get the Ensure out. Like today, he ate pop-tarts, so 2 Ensure bottles, then for his lunch, he ate so Mongolian Beef with fried rice from a Chinese take out. Today was a good day, tomorrow may not be so good. He has lost about thirty pounds since our move here to Tennessee. He was over weight to start with,so he could lose it, but I never saw his bones so defined before, even his "port" is more noticeable.

Ted constantly apologizes for being fatigued and not wanting to do anything or go anywhere. Before this latest episode started, more than a year ago, we were RVing and on the go as much as possible. Sold our RV in March of 2013, and had stopped "camping" a few months prior to that, then the selling of our house and moving closer to "family". I know that if this disease had not "struck" Ted and probably every other PC warrior and "stopped them dead in their tracks", they would all be "on the go" and be the strong men they originally were. This is what I believe and what makes me continue to be strong for "my warrior".

Rob, check with your case worker, nurse practitioner about possible home health visits,meals on wheels. I also do understand about how family can kinda "shy away" from the possibility of losing a immediate family member. Both of our sons were in denial, until they actually saw how their dad was going down with this disease and now have been more attentive to him and me. It's a hard process to understand and to "watch" a loved one lose themselves within a disease.

I posted this same message on the "Jevtana and Beyond" thread,although I haven't seen very much activity on this thread lately.

enjoylife......this is a hellofa roller coaster......you can e-mail me as well....I have a lot of time at night....

Peace, Love and Hope to All.....

Sal
Posted 9/11/2014 8:51 PM (GMT 0)
Sally and all,

It seems like this thread has been slow lately, I guess people are busy right now. It sounds concerning that Ted is losing his appetite. Does he take any steroids? They help my husband, he is on prednisone and they help have more energy and increases his appetite. I don't know how he would be if he wasn't on it. Lately he has been in good spirits, he is drinking ginger ale and says that there is a report out that ginger is great to shrinking tumor activity especially for prostate and breast cancers. Well at this point I just let him do whatever consoles him. We will see the Oncologist in a week and see what the next PSA is. Hopefully his blood count will be okay and he will not require another blood transfusion.

Hugs to all!
Cathy
Posted 9/20/2014 6:05 PM (GMT 0)
Good morning everyone,

We're still here. I've thought of you often have checked-in and read the roads of others. Thank you for keeping in touch. I was inspired to hear Dreamer44 story about trip to Poland.

I think I last left off with my report about the numb-chin, the MRI showing no metastisis. We've been back to the doctor to get a crown and still don't know the answer. His chin still gets sore and numb but not serious, not consistant and rarely requires anything for pain.

We thought we were doing fine until 5/5 when we made a commitment to eat like we believe we should. Even though we have nutritional backgrounds, we had gotten far off track enjoying ice cream and common treats. We went back to fresh, raw, almost vegetarian with eggs & lots of salmon. The first month was exciting as my husband lost 25 pounds, starting at 326 with low BP and good pulse.

Pound 26 changed everything and I think the cancer took over and it's been downhill. He's lost about 120 lbs since. Somewhere in June & July he started having endless aches, pains, low fevers, everything he ate turned to disabling gas, lost his appetite. He has started to eat more but it's still a battle not knowing if it will turn to gas or not. He rarely has any fevers but he still has daily headaches and body aches.

I told our new doctor (and showed my research papers), I thought he had cachexia: the 'wasting away', but the doctor said no. We'll see. We like the new doctor and are hoping for the best. Our last doctor was absolutely awful. She wouldn't follow-thru with our agreements made during our visits. Then, wouldn't return our, or pharmacy, phone calls. I'm so disappointed with this welfare, cattle-call healthcare.

Our last blood test showed poor GFR numbers for the kidneys so we had an ultrasound last weekend. Even my untrained eye could see the difference between the healthy kidney and the other.

He's still not taking any traditional protocols but our QOL of greatly changed. I've found a wonderful cancer support community in Redondo beach (cal). It was said we might get a 2nd opinion and be able to maintain the cancer at a chronic level. I think we're going to look into this and I'll report back.

Best wishes until then.

p.s. I'm going to post this in my other PC forum.
Posted 9/22/2014 11:22 PM (GMT 0)
Hello Strangers

It has been a long time since I have posted. I have been very sick with a major infection from anti-biotics which gave me C-diff. Fortunately my hubby has been on the upswing recently from Zytiga and Prednisone, although he is now experiencing some major side effects. His numbers went down six hundred points in four months, although at last check it was still pretty high. His physical state has improved, with him not continuing to lose weight, and his pain had been going down. Zytiga and or pred is giving him stomach pain, and leg pain. We are seeing his oncologist on Thursday.

I have been following the board, and am continuing to send prayers to everyone.

Susan
Posted 9/23/2014 6:33 AM (GMT 0)
Good to hear from all of you but sad the news is not more promising. We continue in the lull as the Casodex and Lupron are doing their thing and the cancer in his spine sleeps. Third shot and PSA test in October. Will run bone scans,etc in January.

We are living life large while he feels good. Just returned from an Alaskan cruise for our 3rd anniversary. Headed to Hawaii in December for 3 weeks. And he did a solo WWII tour through Europe in August. We are living each day with more love and intention than ever.

In the back of our heads, we know what is in store. I follow you all and you give me strength. Thank you.
Posted 9/25/2014 4:18 AM (GMT 0)
Hi everyone,

Beejane I am posting :)

Tednsal, Sally I so hear you through your posts.

Well as you know PC cancer is up and down. Hubby doing well since they made him go to trelstar for the trial he was denied for, its working! Psa was 227 now with trelstar and Xtandi it's down to 13!!!!! Just a month ago 3 doctors told him he has less than 6 months. Well it's been years now and he hasn't given up. Meds are there and new ones all the time.
We keep going!
Posted 9/25/2014 12:39 PM (GMT 0)
Rob's daughter posted on the jevtana thread that he died on the 20th. She posted a link to his obituary. Does anyone remember how long he was on jevtana?
For all the caretakers here, in their various disease progression status: Thank you for being there, for doing the grunge work, for taking the grumpiness and anger, for figuring out what to do next. It is so sad to know Rob had nobody. He would have been happy to have us at our snappiest when we are done with this and have had enough.
Thank all of you for continuing to post and keep us informed. Lots of us look at your journeys for information about what works and what doesn't, and for giving us advanced warning of what is to come, I am so done with this cancer.
Posted 9/25/2014 12:58 PM (GMT 0)
Just for interest sake, here is Rob's signature: His initial treatment was in 2004. Ten years. That's a good long time, although he was diagnosed at 61 (as he died at 71 from his obituary). Too soon. Life is not fair.
Looks like he tried just about everything with varying results. I wonder what his original stats were.

Initial Dx of PCa in 2003/2004
Radiation (5x5wks) & Brachytherapy (96 seeds) in 2004
Low PSA 6-years then Casodex briefly
Lupron from 2011 to current
Zytiga 2012 (5-mths) - PSA increasing
Prednisone & Xgeva from 2012 to current
Taxotere - Aug 2012 (30-wks) - PSA from 54+ to 12+
Xtandi - June to Aug - 2013 - PSA increasing
Jevtana - Oct to March 2014 - PSA from 83+ to 15+
Lexapro from Oct 2013
Posted 9/25/2014 1:46 PM (GMT 0)
Here is the posting from "Jevtana and beyond" from Rob's daughter......
Just thought that I would post it and I also signed his condolence on the obituary column....so sad....I think we all knew something was up!.
Wish I lived near Chicago so I could go to his funeral, he was such an articulate gentleman and so alone at times except for Gizzy....he will be missed and Iwill miss him as well!
Sal.

Hi everyone. I found you here through remembering my father loved posting here so much. Unfortunately, Rob (Gizzy'n me) has passed away. He died on Saturday (9/20) after a long battle with prostate cancer.

I've written his obituary, if you'd like to send your condolences. I know he came to these threads for daily therapy, and I really appreciate everyone here.

http://www.cuneocolumbian.net/obits/obituary.php?id=499172#

-Amber
✚ New Topic locked
12345678910