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Update - Advanced Metastatic Prostate Cancer

FinishingGrace
Posts: 83
Joined: Apr 2017

Hello everyone,

Recently my neighbor, 59 years old, received this diagnosis. He lives alone. No support system. He does not understand what is happening to him and asked me to step in and help with doctor's visits, managing meds, and generally helping him understand what he is facing.

He recently was discharged after at 18 day stay at the hospital. Biggest concern was kidney failure and creatine levels were at 19.9. The prostate was found to be significantly enlarged with a tumor on the left side. PSA is 606. Biopsy confirms stage four.

Metatisis sites determined by a Cat Scan of the abdomen are seminal vesicules, bladder, kidney, pubic bone, left femur, possibly left lung. Pet Scan to happen this week and I believe the scan may reveal more sites.

I took him to his first oncology appointment on Friday. The doctors have not told him the full story and only break more bad news to him a little at a time. When he was in the hospital they mentioned it was in his pubic bone and femur. At the appointment two days ago they told him it was also in his bladder and seminal vesicules.

He completely shuts down and really isn't able to hear them. I ask the questions.

The oncologist has a 'treatment plan'. Hormonal therapy to remove all testosterone from his system in hopes it will slow down the cancer growth. They also want to start him on chemotherapy. One infusion every three weeks for the next 5 months. I think the chemo med started with a t, but I did not write it down. He also said the cancer was extrememly aggressive with a very high gleason score. He did not mention the number and I didn't ask for some unknown reason. :(

Oncologist said he was 'optimistic' that my neighbor would at least survive through this initial treatment plan. He did not appear 'optimistic' to me at all.

I work full time and run my own business so I have been staying up very late at night researching prostate cancer. Sadly, I am familiar with other cancers as I have walked this path with more than one person in my family.

As I'm researching I'm wondering if it's possible that palliative care is my neighbors best option and that bringing hospice in at the earliest possible point may greatly enhance his quality of life. The oncologist did tell us that if he makes it through the chemo they will continue with the hormone shots and that people sometimes live for a couple more years. They do consider this palliative care.

The oncologist said he is not a candidate for radiation (there's a proton beam center right here in town) because of how far the cancer has spread. The doc also said that the chemo is going to make him quite ill and he will lose all his hair. I think he should have the right to know all of this so he can carefully choose the option that makes most sense for him.

I also think he should seek a second opinion. He is relying on me completely. After the oncology appointment he asked me if I understood everything the doc said. I told him I did. He said good, because he heard a couple of bad things and he can't handle knowing anything else right now. But he's glad I know...

Would appreciate your opinions and differing perspectives so I can be as much help to this man as possible. Keep in mind that his treatment options are limited because he is on Medicaid and currently has zero income. 

Kindness appreciated.

VascodaGama's picture
VascodaGama
Posts: 3041
Joined: Nov 2010

Grace,

Welcome to the board. I want firstly to thank you for the help you are providing to your neighbor. It is very nice of you to intervene in his behalf.

I think that the PET scan will had more locations of the cancer but as you describe above, one more affected location would not alter his status (stage 4) or conventional treatment options. Surgery and radiation would not help when the cancer spread so widely. Palliative hormonal plus chemo (Taxotere) is the route to take. Surely these do not cure but manage to hold the bandit during a long period. The problem is the side effects that may turn his quality of life very sour.

He may need more care to treat the side effects than the cancer. This will put you on a continuous look after if he doesn't adapt to the symptoms. I do understand his wish in not knowing the extent of the illness but at least he should be informed about the symptoms and what to do when they occur. He is young so that his body may accept naturally the chemo blow. However, this bandit may start damaging other organs which would require additional treatments.

There is a newer therapy for systemic cases with wide spread involving radiopharmaceuticals which have shown positive results in patients whose tumour have particular receptors. The most famous (Lu177 PSMA) is already in practice in Germany and can be accessed in the USA via clinical trials. This is the therapy that your neighbor could try getting involved. Clinical trials are safe and free of charge, and it includes after care services. I would discuss with his doctor to check for possibilities in put him on a trial for Lu177 (or combination). You can also get a second opinion from an institution involved in the trials, contacting the person in charge indicated in the link below;

https://clinicaltrials.gov/ct2/results?term=lu+177+prostate&Search=Search

Best wishes and luck to your friend.

VGama

Old Salt
Posts: 720
Joined: Aug 2014

Your write up gives a good picture of  the status of your neighbor and his prospects are indeed dour. I agree (not an MD) that the treatment plan (hormone therapy + six rounds of taxotere) that the oncologist has proposed is reasonable considering the very advanced stage of the disease.

It is not unusual for a patient to shut down when hearing about cancer. You are doing a great service and I hope that your neighbor will eventually start to listen. Whether he is willing to face the extremely rigorous therapy proposed by the oncologist, or not and enter hospice care at some point, should be up to him. Considering his relatively young age, I speculate (!) that he could fight the disease for some time. Maybe even a long time, but his Quality of Life will suffer. 

Again, thanks for your help.

FinishingGrace
Posts: 83
Joined: Apr 2017

Thank you for the information about the clinical trial. I will look into it and ask about it at his first chemo treatment on Wednesday.

He did ask me the first question he has asked me so far. He asked what the side effects of the 'testosterone shot' would be. I explained to him that it was going to remove the testosterone from his system and there were some unpleasant side effects. I gently told him a few of them and he told me he couldn't hear any more. I also explained why it's a treatment. Completely broke down. 

Cancer sucks.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3325
Joined: May 2012

Grace,

I had an experience slightly similiar to what you describe about 4 years ago. A friend (70 at the time) was terminal with metastatic Prostate Cancer (PCa).  His case differed in that he had had the disease already about 11 years at that time -- he had been through about every known treatment prior to my getting involved. He had grown kids, but all of them lived way out of state and could not come around much.  I like you was the 'question asker,' med supervisor, etc (I lived about a mile from his house). And he also was by that point "disengaged," not paying much attention, and not very motivated.  But he had great insurance and was highly educated.  

You probably need to get social services involved, and certainly any friends or neighbors he has who will help. 

The chemo drug is almost definitely Taxotere, but goes by a variety of names. It will weaken him profoundly, fast. But it can reduce PSA dramatically, at least for a time.  Hormonal Therapy (HT) also is rough.

Quite frankly, despite his relative young age for a metastatic PCa patient, his prognosis is probably very poor. Demand that the oncologists explain what they mean when they say a treatment plan will work "for a while." They are making educated guesses, but often "a while" is code for a very brief duration. Demand honesty; do not accept vague generalities.

Hospice at some point will be necessary. The general tendency is to wait much too late for hospice to take over, with the objective of comfort over cure. there is no cure for metastatic disease with the multitude of involved organs that he has.  My friend finally went to hospice, and died three days later.

Chemo and HT, despite how harsh and weakening they are, may get him to rebound an perk up for a time. But things don't sound good. Create a support network as fast as possible, even if the government has to help.

Abut two years later I got my own case of Stage II PCa, but at least I knew the lingo when I began reseaching treatments.

max

Swingshiftworker
Posts: 1013
Joined: Mar 2010

OP: First, let me say that I think that think you're an amazing person to be willing to take on such a responsibility for your neighbor.  It's a huge burden and I won't hesitate to say that you should find a way to relieve yourself of it because no good can come from it to you.  I know that's selfish and it sounds like you're the kind of person who would never say such a thing.  So, I'll say it for you.

In this regard, I think you should determine if neighbor's medical insurance includes the services of a medical social worker.  My mother was in Kaiser SF and they had a special Community Care program to provide assistance to aged or home bound patients.  Your neighbor may qualify for such services.

My mother and father both also received hospice through Kaiser, which generally is not provided unless the patient is expected to die w/in 6 months but, as Max noted, hospice is often offered too late. 

Like Max's friend, my father (89) died within days of being admitted to hospice. My mother (101), however, was recommended for hospice early and died almost a year after it began for her; largely because my mother was a tough old bird who outlived everyone of her generation except an aunt of mine who is still living but was/is 9 years younger than my mother.  

In any event, given all of the problems your neighbor is having the the likelihood that he will eventually die from prostate cancer or from other causes shortly, you should also consider contacting a hospice provider to see if they will take his case, since the level of care that he will need in the coming months is likely to very high; probably much higher than you are capable of providing without causing your business and personal life to suffer.

Good luck and best wishes to both you and your neighbor!

Clevelandguy
Posts: 470
Joined: Jun 2015

Hi,

Have you looked into this form of treatment yet?  Looks like its promising for advanced cancers?  Hang in their with your neighbor, it sounds like you are the only friend/confidant he has.  You are to be commended for taking on this task, we need more people like you on this planet.  

The American Cancer Society has a pretty decent article on Immunotherapy.  https://www.cancer.org/treatment/treatments-and-side-effects/treatment-types/immunotherapy/what-is-immunotherapy.html

Dave 3+4

FinishingGrace
Posts: 83
Joined: Apr 2017

I appreciate your insight SwingShiftWorker and I have put strong boundaries in place because I tend to do too much when I make a commitment to someone. You make a very good point. For example, he missed an appointment this morning because I have decided that I am only going to take him to appointments for chemo as his oncologist is coordinating care. Tomorrow someone else is taking him for his Pet Scan. So I am trying to help in a real, meaningful, and compassionate way with good boundaries in place. He is a good person but has already demonstrated in a few ways that he would gladly let me do every thing for him if I would. I can't and I won't.

As far as nothing good coming from it for me? I disagree. I'm not doing this to get anything out of it. I'm doing it because I'm a Christian and want to actually obey the Bibles call to believers for us to 'do unto others as you would have it done unto you'. So I'm not worried about that. :)

I haven't looked into alternative therapies Clevelandguy, and cannot commit to doing so, but it's a good idea and I will ask the oncologist about it when we go for the first chemo appointment on Wednesday. Thank you. I'm also going to ask about a clinical trial VascodaGama suggested.

Thanks for the help and different perspectives. I'm grateful for each comment. His petscan is tomorrow and he will receive the results the next day at his first chemo appointment. I expect it to be a very difficult day for him. 

Swingshiftworker
Posts: 1013
Joined: Mar 2010

I get where you're coming from.

However, caring for a dying person (I did it for both of my parents) is an emotionally traumatic event that doesn't just happen in a flash but drags on and on as the person you are caring for deteriorates and eventually dies.  It affects and changes you, not necessarily in a good way.

That's what I mean by "no good can come from it for you" but if you find solace in the fact that you are being a "good Christian and doing God's work," fine, but it will come at an emotional cost that you need to be prepared to pay. 

However, it sounds like you are ready to do that.  So, all I can say again is good luck to you and your neighbor both.

FinishingGrace
Posts: 83
Joined: Apr 2017

Thank you. I understand better what you meant. 

I am approaching the 2nd anniversary of my father's death. You are right. My mom and I cared for him until his last breath which was caused by bladder cancer. I will never be the same.

The emotional cost here is very high. The cost of leaving my neighbor without treatment, human contact, food, or any other resource would be infinitely higher.

Thank you for the well wishes. Deeply appreciated.

Old Salt
Posts: 720
Joined: Aug 2014

Others may know a lot more, but from my reading of taxotere chemotherapy one can expect a 'crash' a few days later. Moreover, the later sessions will be worse compared to the earlier ones. There are some 'tricks' though to help with the side effects. Hopefully the doctor(s) will provide appropriate guidance.

The side effects associated with hormone therapy typically show up after a month or so.

I wish you both strength with the first round of chemo tomorrow (5/3)

 

PS: Two links with a lot of advice:

The first one from another patient forum, the second one 'official'

 http://www.healingwell.com/community/default.aspx?f=35&m=3487897

 https://www.cancer.org/content/cancer/en/cancer/prostate-cancer/treating/chemotherapy.html

FinishingGrace
Posts: 83
Joined: Apr 2017

Thank you for those links. Taking a look tonight.

 

FinishingGrace
Posts: 83
Joined: Apr 2017

We were at chemo from 9:30 until 3:30. Exhausting day, but got some good news.

They have revised the number of metastatic sites. Petscan showed seminal vessicals, bladder, pubic bone and a rib in the upper abdomen. It isn't in the femur, kidneys and lung as they first suspected.

Oncologist believes that he has a good chance of extenting his life substantially and that is the route he has chosen to take. Treatment went well and he feels good today. We will see what the next few days bring. Thank you so much for the information and encouragment.

I do not necessarily believe what the oncologist is saying but it's not my call and I'm hoping for the best for my neighbor.

PSA is 606

Gleason: 9

Stage 4

Swingshiftworker
Posts: 1013
Joined: Mar 2010

I think that you have the good common sense to know this already but those are VERY scary prostate cancer numbers.  

Add the spread of the cancer to the bladder -- which is a more deadly form of cancer which allows it to spread to the kidneys and from there to the vascular system -- and it frankly does not bode well for your neighbor. 

FinishingGrace
Posts: 83
Joined: Apr 2017

I agree.

It's why I said what I did about not believing the oncologist. I'm not an expert on prostate cancer but I'm also not the dullest knife in the drawer. I'm looking at forums and guys are worried about a PSA of 10 and I'm thinking....uhhhhh....my neighbor has a bleeping 606! If a 10 is high then we are in trouble.

If nothing else it makes me incredibly thankful for my dad's oncologist. Dr. Naot had the most amazing care and compassion but spoke the truth and allowed my dad the beautiful opportunity to back away from treatment that was ineffective and live out his life without pain and his dignity intact.

Also, can someone explain to me what the numbers are that people are using that look like 2 + 3 or 4 + 3. I don't understand what that references.

Thanks!

Swingshiftworker
Posts: 1013
Joined: Mar 2010

Although the description of the total score descriptions is incomplete, Wikipedia has a pretty good explanation of the basic Gleason grading methodology, which you can find here:

https://en.wikipedia.org/wiki/Gleason_grading_system

Basically, the 1st score is the most commonly found cell morphology (eg., normal vs cancerous rated from 1 to 5) and the 2nd score is the next most commonly found cell morphology in the sample(s).  Add the 2 together and you get the total score. 

For odd Gleason scores (7 or 9), a higher 1st score (4+3 or 5+4) would be more concerning than a higher 2nd score (3+4 or 4+5), simply because the cancer is more pronounced.  So, a more favorable prognosis might be justified for a Gleason 7 patient with a 3+4 rather than a 4+3 score.  But for anyone with a Gleason 9 (5+4 or 4+5), I don't think there's any significant difference either way especially if there is already evidence of metastisis beyound the prostate capsule. 

 

FinishingGrace
Posts: 83
Joined: Apr 2017

Thank you. 

That explanation helps.

FinishingGrace
Posts: 83
Joined: Apr 2017

It was suggested I move this update here.

My neighbor is responding to the hormone and chemo. His PSA was down from 606 to 314 today. 

This is good news, correct? They are going to test it every month.

Another question. I've done some reading in other threads and it seems that taking calcium may be contraindicated during treatment, but I'm uncertain of that. They warned him about something with his jaw/teeth with the treatment plan, so you would think he would want to take calcium. 

VascodaGama's picture
VascodaGama
Posts: 3041
Joined: Nov 2010

Grace,

Please note that we are not doctors and do not own this forum to give you instructions. You do what you like. However, I think that for the sake of the many reading our exchanged discussions (even to those newbies not participating) the fluidity of the conversations can be understood better and turn beneficial to you and the reader (who could be confronting a similar problem).

I still do not know the full scope of your friend's treatment protocol. What does it include?

The treatment for metastatic PCa in bone typically includes bisphosphanates like Fosamax or drugs that apart from strengthening the bones also cause damage to the cancer, like Prolia, etc. But these adding concomitant treatments are not free of side effects. They are linked to osteonecrosis of the jaw. In any case, such occurrence is seen more often in guys that had taken the drug for long continuous periods. In the case of Prolia (denosumab), it is contraindicated in people with low blood calcium levels, because it uses calcium in its work with the osteoblast (to bone formation).

The lower PSA is great but expected. I believe the chemo has already killed many buggers. Let's hope for continuing improvements.
Do you know the results of other blood tests including the testosterone?

Best

VGama

FinishingGrace
Posts: 83
Joined: Apr 2017

Hey VGama,

FYI

PSA 606, down to 314 after one chemo treatment and hormone injection

Gleason score has been placed at 4+4, they originally gave a combined score of 9

Mets to seminal vesicules, bladder, femur, rib. Large tumor on the prostate.

His treatment plan is straightforward. 5 months of Tasotere (I may not be spelling that correctly) given every 3 weeks. He has had a total of two chemotherapy treatments with the Tasotere so far. He is getting a hormone shot every 3 months. He received the first one at the first chemo treatment. I do not remember the name of the injection and the paperwork is at his house.

I specifically asked the oncologist about his testosterone levels this week and was told that had not been tested. I have not asked about his calcium levels but I will.

The nurse specifically warned him about osteonecrosis of the jaw so one of the meds you mentioned must be a part of the protocal.

Thanks for being such a help on this forum. Your support, knowledge, and encouragement is a blessing.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3325
Joined: May 2012

Grace,

His chemo drug is Taxotere ("Tax-eh-Tear"), the most common conventional chemo given to metastatic PCa patients. I say "conventional chemo," because when Taxotere stops working, other, newer chemo-Hormonal hybrid drugs are used, specifically Jevtana and Zytiga.

Your friend's degree of metastasis is severe.  Taxotere is harsh to endure, and its effects intensify with use (for nearly all patients).  He will get weaker fast.  I hope he is an inpatient now, given the urinary issues you discussed.  Taxotere can extend life, sometimes significantly, especially if the HT drugs he is getting work well. But know that he is not curable in any scenario.

Know that his ability to function alone will drop off a lot, almost certainly. Plan accordingly.  Profound weakness, sleeping all day, no apppetite, are all likely. When I was on combination chemo for Lymphoma years ago (not Taxotere), I was so weak at times I could not speak into a telephone held up next to my head. That is the kind of weakness I am speaking of.

It's great that one infusion cut his PSA in half.  Between the chemo and the HT drugs, he might rebound and have a better period with quality of life.

http://chemocare.com/chemotherapy/drug-info/Taxotere.aspx

 max

.

FinishingGrace
Posts: 83
Joined: Apr 2017

Thanks for that insight Max. He is doing pretty well considering. He did have about 3 days of being in and out of bed after the first chemo and hormone shot about 3 1/2 weeks ago. It's much better this time. He has a profound sense of being tired and his hair is starting to fall out. That is really bothering him a lot and has him down today. I didn't even think about how hard losing his hair would hit him.

He even got up and went to church this morning on his own.

He refused to go the the ER yesterday when I encouraged him to go. I haven't said anything else about it but I know that although he's an intelligent man his decision making skills are not at their best when he feels so badly. As I'm not a family member I do not push at all. I just make sure he takes his meds and gets to chemo. He says he's going to the bathroom a little better today. I don't know if that's true or not.

It's good to understand that this will have a cumulative affect on him. I'm going to be gone for a week and a half in June. I have no idea how he is going to cope. For now, he is doing remarkably well with the chemo.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3325
Joined: May 2012

Grace,

When I was on chemo, my son's 8th Grade class bought me a ball cap from the local minor leauge baseball team. I wore it all the time...they felt good about it, and so did I.

Wearing a hat reduces the radical baldness effect that a chemo patient gets. Women of course have the wig option, but men not so  much. I never met a man at infusion wearing a wig, it would just look ridiculous.  During the winter I wore a stocking cap, sort of like what the male college hippies and hackeysack players use.

Find out his favorite sports teams, and then surprise him with a few ball caps. It might help a lot.

I forgot to mention this above, but when a person is on Taxotere they are also on Prednisone, a steroid.  The Prednisone is taken at home, not at infusion. It is critical that he take the Prednisone properly, as the doctors have instructed. I would check on him regarding that also.  The Prednisone in some complex manner actually has a cancer-killing effect itself when mixed with certain chemo drugs, but is mostly given to boost energy levels and appetite (see the link again from earlier).  My drugs did not include Prednisone, but I understand that it can cause restlessness and agitation for a few days after dose, so understand if he gets more irritable than normal..

http://chemocare.com/chemotherapy/drug-info/Prednisone.aspx

max

FinishingGrace
Posts: 83
Joined: Apr 2017

Hey Max. Yes, he is on a daily oral dose of Prednisone. I put it in his morning pill case and I know he is taking it every day. His appetite has been very good and he only seems to have slight nausea about 4 days after the chemo.

I am taking him to the oncologist in the morning. He cannot live like this. Having to strain his guts out to urinate and up at least hourly throughout the night because he has to go so often. He is miserable.

So he can't have a foley forever, self cath is agonizing and he can't go on like he is. I have no idea what they can do for him, short of surgery, but I'm going to do my best to get them to take some action on his behalf.

And not that this is relevent, but the last time I didn't go to an oncology appointment the doctor asked my neighbor 'where is your bodyguard?' when he entered the exam room. I have acted professionally and with courtesy towards the doctor and staff at all times. I can tell my questions irritate him but I am just trying to help my neighbor.

I'm so offended over the comment and it really hurt my feelings. You would think I was the one who got the hormone shot. I'm not sure why it bothers me so much but I hate the thought of having to see the guy tomorrow.

I have no idea what I've done to warrant such disrespect. It was probably just an offhand comment in his mind but it isn't in mind.

I'm sure I will get over myself soon enough. Embarassed

VascodaGama's picture
VascodaGama
Posts: 3041
Joined: Nov 2010

Grace,

You may see the doctor's expression from the positive side of it. Your presence at the consultations leads the doctor to feel better in going through the treatment. He is more relaxed for knowing that there are someone caring on the developments when he is not arround. Your presence gives him more assurances that his instructions are followed by the patient.
It is true that they do not like to be contested not just by patients/family but even by other doctors. However, you have been polite and your presence becomes noticeable for whatever your personality has leaded. They like patients that are educated (to certain extent) on the problem so that they do not need to become professors to teach in much detail the occurrence. He may have missed your presence.

Regarding Prednisone, this is a drug full of tricks. I would recommend you to read the details as it should be taken with some caution, and it should not be cut-off at once, in the end of the treatment. Depending on the dose taken daily, Prednisone may cause atrophy of the adrenal glands leading to shock. It is also linked to bone loss which may require the use of bisphosphanates we discussed above. Please read this link and request for instructions, from the doctor, as advertent of a possible occurrence;

https://www.verywell.com/prednisone-10-things-you-should-know-190239

I would insist requesting full tests (lipids, kidney and liver function, cardiovascular, DEXA scan, etc) because of Prednisone, but politely.

Best wishes for improvements.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3325
Joined: May 2012

Grace,

I agree with Vasco's take of what the oncologist said. His reaction was more likely from disappointment that you were not present.  He no doubt knows that the patient is difficult, and appreciates your role.

I went to every appointment my friend had for his last 6 months of life during PCa; usually we saw an N.P.  The friend was, like your own friend, educated, smart, but disengaged; he would not remember anything the NP told him on the way home. I know that she would have been concerned if I had not been present for any appointment.

Doctors, like everyone else, can mean well but say the wrong things, or be misintrepreted.  I was in ICU once on a ventilator and had developed liver failure. The lung doctor was a young hotshot******** whom all the nurses disliked, but he was the best Pneumonologist around. He did not see me often, only when there was a lung problem.  One day he was walking out of the ICU after seeing another patient, and noticed that I was still in there. 

He turned and essentially yelled in the door, "You're still in here !  Did your liver ever start working again ?"   I was still on the ventilator, and hence could not speak -- something  you would think he would have known better than anyone -- so his response was pathetic.  But I guess he meant well. So what that he yelled at a man near death,  "Those organs ever start workin' again ?"

I would let the comment roll off of me and move on for your friend's welfare,

max

FinishingGrace
Posts: 83
Joined: Apr 2017

Vasco, thanks for the advice on asking for tests and I will read the article about the prednisone. You and Max and both right about the doctor. 

He was super polite to me and even smiled at me once during the visit today. I don't normally over react to things but I did to this. Thanks for the encouragement and different perspective.

Max - unbelievable. It's amazing the things people say and do. One can only hope your middle finger was in good working order...

The oncologist today was unable to help. A bladder sonogram revealed there is urine retention in his bladder, but not enough to warrant a cathether. He is up 10-12 times a night trying to go. He is on the maximum daily doseage of Flomax. Basically, they said there's nothing they can do and he will be fine and if it gets worse to go to the ER. And to go see a urologist.

Because he is a medicade patient they have assigned him a primary care doctor. She has to refer him to a urologist. Her first appointment? JUNE 20TH. And then weeks for the referral to go through and then he has to find an opening in the urologists schedule. It could be months before he sees the appropriate doctor.

I was (and am) livid, but restrained myself today and was polite. But oh the things I was thinkingSealed

Grinder
Posts: 442
Joined: Mar 2017

"If it gets worse go to the ER". Been there done that. This may not help at all, but I and several others had a bit more success using 5mg Cialis in the morning, and full doseage Flomax in the evening. It only keeps the pipes open slightly, but it is better than a trip to the ER. One guy I know switched exclusively to Cialis. So individuals react differently, so what worked for one may not work for another. And Cialis is expensive. But often a GPs and Urologists have free Cialis one month supply to give away because Lilly is really pushing 5mg Cialis as a BPH relief drug. It wouldn't hurt to ask.

I really appreciated your comment about helping your neighbor, not for reward, but its part of your nature to do it. That's what Paul says about our new nature doing things because that is just what comes naturally now... Even though we still have the " old man" still trying to discourage us or demanding some kind of reciprocation or reward. Hang in there. 

FinishingGrace
Posts: 83
Joined: Apr 2017

We will definitely ask about the Cialis.

It has been a blessing to help him. It isn't always easy but it is not a burden.

Old Salt
Posts: 720
Joined: Aug 2014

Can we clone you?

FinishingGrace
Posts: 83
Joined: Apr 2017

My neighbor is doing amazingly well. He had chemo this week and two days later mowed his own lawn. I'm just in awe of how well he does with the chemo. It makes him a little tired and fuzzy minded for a couple of days but there isn't even any nausea. 

He is having significant issues with hot flashes. He can be fine one minute and literally pouring sweat the next. It happens once or twice every hour. Then he will get super cold. I'm assuming this is normal because of the hormone shot but the oncologist said it would get better over time and it is definitely getting worse. 

He is going to get another shot in two weeks with the next round of chemo and I'm wondering if that is going to make the hot flashes any worse. Does anyone have any ideas on relief for these symptoms? 

Thanks! :)

VascodaGama's picture
VascodaGama
Posts: 3041
Joined: Nov 2010

The unbalance level in circulating hormones is seen as the main reason for the hot flashes. Increasing estrogens to balance may be the best alternative for the lack of testosterone that will not indulge the bandit. I would recommend him to try estrogen patches or eat foods that help boost estrogen naturally like: soy, olives, rice, carrots, tomatoes, pomegranates, apples, plums, etc.

Surely he can also use a small fan. In any case, the condition will not last forever. Our body temperature system will accommodate to the situation and will hold the control to distribute the fewer existing androgens among the systems in need for it.

Best wishes for continuing improvements.

VG

FinishingGrace
Posts: 83
Joined: Apr 2017

My neighbor is having increased and debilitating hot flashes. The further we get from the hormone shot, the worse the episodes get. It has not improved at all. Yesterday his oncologist gave him Gabapentin 330 mg. Told him to take one per night and the hot flashes would get better.

I cannot find any evidence this drug effects hot flashes. It is used to calm restless leg syndrome, neuropathy, and nerve pain caused by shingles.  Anyone have any experience with this? He gets another injection this coming week (one every three months) and I can't imagine what it's going to do to him with the hot flashes already being so bad. Sometimes he gets so overcome with the heat that I think he just about passes out.

Sticking his head in the freezer doesn't help. He sits in front of a fan. He got some popsicles to eat when it happens but they don't help much. He is having one to two episodes every hour.

Last week they did the third PSA it's down to 157. Started over 600, then down to over 300, now down to 157. 

Old Salt
Posts: 720
Joined: Aug 2014

If at all possible, encourage your neighbor to take a daily walk and to exercise. He needs distraction; sitting in front of a fan isn't good for the mind. Yes, I know, exercise is hard when one feels tired and without energy to begin with. 

Glad to read that he is responding to the therapy. 

FinishingGrace
Posts: 83
Joined: Apr 2017

He is bored out of his mind. There is nothing much for him to do. He has no friends and no family except those who occassionally turn up to see what they can get from him. I visit with him almost every day but working full time prevents me from doing much else beyond managing his care.

Old Salt
Posts: 720
Joined: Aug 2014

How about

A puppy

Volunteer work (library, food kitchen etc)

FinishingGrace
Posts: 83
Joined: Apr 2017

I appreciate the ideas. He has 3 little dogs that he barely takes care of now. He doesn't have a drivers license or a car, so is dependent on others to go anywhere. When I say he doesn't have friends, I really mean he doesn't have a single friend.

He has about $700 a month to cover all expenses so you can imagine how limiting that is for him.

He has organized his garage and done some projects inside the house, but now he just sits around all day with nothing to do except watch the one channel his tv will pick up. 

I welcome ideas and do wish he could do something for others. The focus on self is unhealthy and deepens the depression he struggles with.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3325
Joined: May 2012

Grace,

I am commenting only on what you said about his bordom and "only getting one channel."

While TV is far from fulfilling or healthy, it can break his extreme boredom. A window-mounted tv antenna can be bought for as little as around $25.

A DVD player can be purchased used at Salvation Army or Goodwill for about that amount -- something to let him watch old movies, on almost any old tv.

As I think I mentioned to you, 4 years ago I assisted an old friend in a situation similiar to your friends. All family was dead or out of state. I drove himm to nearly all of his appointments during his last year or so before he died in hospice three days after admission there.

He watched tv all day, too weak to walk.  Without tv he most likely would have gone insane.  Some channel or movie choices from the antenna or dvd might do a lot for him.

max

FinishingGrace
Posts: 83
Joined: Apr 2017

Good points Max. He does have a dvd player but doesn't seem interested in watching movies. He does watch tv and you are right, he needs something. A couple of years ago I gave him a nice tv that was given to me. 

I asked him today if he would be interested in volunteering somewhere or doing something to help others. He said he would love to do anything he could to help other people. There's a rehab center and assisted living home just a few miles away. I'm going to give him the number and see if they would allow him to come and play cards or checkers with some of the residents to help them pass the time. I think this would benefit him as much or more than them but I think they would welcome the help. He is still very strong physically.

VascodaGama's picture
VascodaGama
Posts: 3041
Joined: Nov 2010

I wonder if his estrogens level is right. Prednisone could be causing atrophy of the adrenal glands, indirectly affecting the manufacturing of androgens (in addition to the LHRH agonist 3-months shot). Discuss the matter with his doctor/nurse and proceed with due tests. This is needed not just to help in the hot flashes saga but to control other healt issues (eg; kidneys, liver, etc) for avoiding further damage.

It is good to know on the lower PSA. The results from Chemo punch take about 6 months, the life cycle of cells, before it acertains success. I believe that still more good news will come.

Best,

VG 

Old Salt
Posts: 720
Joined: Aug 2014

Clarification: hot flashes are (unfortunately) normal for patients on hormone therapy.

FinishingGrace
Posts: 83
Joined: Apr 2017

Thank you Vasco. I will bring it up at the next appointment.

And we knew hot flashes were a side effect but were assured they would get better over time. That is definitely not the case for him. As it's gotten steadily worse I've gotten more concerned.

VascodaGama's picture
VascodaGama
Posts: 3041
Joined: Nov 2010

Grace,

My comment regards to your description on his symptoms. The Hot-flashes situation should improve in time as our body temperature clock regulates to adapt to the lower level of androgens but in his case it got worse, which cause should be investigated. It is an expected normal condition as commented by Old Salt above if such shows improvement. In my lay opinion I see it as a red flag risen by our body informing us that something is not proper. Surely the symptom in some guys is more acute than in others but the feel of improvement should be there.

Please note that I have no medical enrolment. I have a keen interest and enthusiasm in anything related to prostate cancer, which took me into researching and studying the matter since 2000 when I become a survivor and continuing patient.

VG

 

Old Salt
Posts: 720
Joined: Aug 2014

The effect of testosterone deprivation (ADT or hormone therapy) vary a lot among individuals. For some, it may get better with time, but I read (!) that more commonly, it gets worse. For me, the side effects were about the same during the 18 months that I was on hormone therapy. Then it takes quite a while to get back to 'normal' and some never get back to their old self. Age plays a role in all of this as well.

FinishingGrace
Posts: 83
Joined: Apr 2017

This certainly my neighbors experience. This new drug seemed to help slightly but only slightly. So they doubled the dose at the appointment today. Will update on it's efficacy in the coming weeks.

FinishingGrace
Posts: 83
Joined: Apr 2017

Down to 90 at todays visit. The Taxotere is quite effective.

I asked the oncologist about calcium and he told me he had never heard of there being an issue with calcium and prostate cancer patients. I didn't know what to say so I said nothing. I asked about radiation for the spots on the bone and he said that would only be done if there was pain. I asked about the new issue of incontinence that my neighbor is facing. He said he didn't know anything about that either and we should go see a urologist. Will work on getting that done tomorrow.

So. That was today's appointment.

VascodaGama's picture
VascodaGama
Posts: 3041
Joined: Nov 2010

Grace,

The lower PSA is in line with our previous exchanged comments. It also confirms the success of the treatment in holding the bandit at its tracks. Thinking of cure with this intervention is futile. Radiation that could do miracles is not recommended because of the vast spread of the cancer (one cannot radiate it all), however, it can be administered at some spots but such a field is decided when the cancer causes nasty effects/symptoms like pain. His doctor is reserving the RT intervention for that timing.

Mean while your friend will have to monitor the side effects from the therapy, where all markers must be periodically tested. The typical drugs prescribed by doctors to treat the symptoms in Chemo/ADT protocols are those that treat depressive disorders. This is in fact all related to the lack of androgens in circulation that deregulated several of our body systems. I never heard about Gabapentin but most probably this is common in chemo therapies. The traditional pill for hot flashes is Effexor (Venlafaxine) that treats chronic fatigue (another nasty symptom from ADT). According to the literature on Gabapentin, this drug has also side effects of its own some over exposing the ones already settled in, such as blurred vision, vertigo and high blood pressure.

The most traditional drug given to PCa patients on chemo is Wellbutrin but this is a similar drug to the above. I recall Dr. Myers comments on PCIR symposiums in regards to the use of estrogens to alleviate symptoms from ADT3 (total blockade) patients. In other words, decreased estrogens in circulation influence directly some of our brain functions like the depressive moods, etc. I wonder if doubling the gabapentin is the best solution. As a lay man, I would try exchanging this drug with something similar like the Effexor. But I insist that the estrogens test should be done. That also would help in judging a malfunctioning of the adrenal glands (an issue probably linked to the prednisone).

As a substitute to pills, Soy products are recommended by ADT patients to avoid hot flashes. Do these works? I do not know. Fortunately for me the side effects from ADT were numerous but mild. They all had their period of higher intensity along my 2 years of chemical castration and I noticed well when my body adapted to the lack normalizing the systems. In my case ED and fatigue were the worse. In the end period I experienced king of rheumatoid arthritis. I never took pills but changed my life style (earlier dinners and afternoon naps) and did some control on diets. Walking 5 to 8 Km daily may have been the best drug I took. At the end of ADT I was worried if I would recover 100% as commented by Old Salt, and, sincerely I do not know if even today 4.5 years out of castration all my systems recovered fully. Though, the typical effects/symptoms are gone. My latest case of CKD could have been a cause of ADT effects (malfunctioning Thyroid) or an indirect cause due to high blood pressure. I managed to get it under control with BD pills and a change in diets.

You are really a good friend of your neighbor. Your doings are supper and the reports are helping many more than what you may think. I thank you for your involvement in his behalf.

Best wishes for continuing success in the PCa control.

VGama

FinishingGrace
Posts: 83
Joined: Apr 2017

Thank you Vasco. I appreciate the information about other meds that may be more effective at dealing with the hot flashes. Fatique is certainly an issue for him. He is trying to evaluate (on a scale of 1-10) how much the Gabapentin has helped. He said it was at a 1 (very little help) with the hot flashes the first week. He is going to evaluate again after one week on the double dose. We will see if the increased dose helps. If not I will ask about the other meds you've mentioned here.

I wish that he would exercise and eat healthy. This is not something he is willing to do at this time. It is his choice.

Really appreciate your feedback. Thank you.

FinishingGrace
Posts: 83
Joined: Apr 2017

Three weeks ago a different oncologist (not the doctor we normally see) told us his PSA was at 53. Last week his normal oncologist told us his PSA was 63. This week they told him that his PSA is 61.7.

So the numbers are not continuing to fall at the rate we hoped for. I know that coming from 606 to 61.7 is a vast improvement and I believe it shows the taxotere and the hormone therapy has worked to some degree. His PSA may never fall to undetectable levels because of the advanced nature of the disease.

I do have questions.

They are giving him a hormone injection every 3 months. He just received his second injection. They have not tested his testosterone levels and I've asked. Why wouldn't they test this level? How do we know if the hormone injection is worth the horrible side effects he faces if we don't know it is dropping the testosterone in his body or not?

For some reason the oncologist removed the oral prednisone tablet he has taken every day since starting the chemo. While on the predinisone my neighbor has experienced very few side effects from the chemo other than being extra tired. He's been almost fully functional until the last treatment without the prednisone. Without the prednisone he vomited for days, couldn't get out of bed, and was in terrible condition. There were no other changes that I am aware of. Why would the doctor tell us he didn't need the prednisone any longer? Is there something going on that he just isn't telling us? Even the nurses thought it was strange because they wanted to refill the prednisone and double checked with the doctor when I told them the doctor said my neighbor didn't need it anymore. Any insight appreciated.

He only has one chemo treatment left in this round. But his PSA is still so high, and when on prednisone he tolerates the chemo very well. Would it be adviseable for him to continue with additional chemo treatments to see if the PSA will drop further?

He has his first PET scan since starting treatment on the 11th. It should reveal much concerning the spread or recession of the cancer.

Thanks guys. So grateful to have your help and insight.

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3325
Joined: May 2012

I can address only a small part of your question, Grace.  I am not conversant in HT and the way it is "played." Vasco or one of the others can possibly  address this.

His PSA drop from Taxotere is remarkable and a cause for thanksgiving.  Why the oncologist ended Prednisone I have no idea.  ASK HIM !  It is as simple as that.  Jevtana and Zytiga are both later administered with Prednisone, so he will be back on it soon enough. Prednisone does cause agitation and irritability in other patients, but it sounds like such is not the case with your friend.

Prednisone is used for a variety of reasons with numerous chemo drugs.  It boosts energy and appetite for one, reduces swelling and inflammation also.  It can have an indirect effect on nausea, but is not a primary EMEND type drug.

Only the oncologist can determine if he is suitable for further Taxotere, but I would ASK that also.  The friends I have followed on Taxotere were allowed to use it until it ceased to be effective, but is seems it is still quite effective in his case.  This will happen: At some point the Taxotere will no longer help, and post-Taxane drugs are introduced. My friend Gary went from a PSA of over 1,000 to around 250 on Taxotere, so it has done much more for your friend than it does for some other men.

I am glad you updated us, I was wondering how things were going for him,

max

 

VascodaGama's picture
VascodaGama
Posts: 3041
Joined: Nov 2010

Most of the symptoms he started to experience are due to the sudden withdrawing of the prednisone. This drugs is tricky and should never be stopped but phased down along an adaptation period. The immune system is in full swing and affecting your friend.

The HT shot you refer may be Lupron (3 month). This leads to chemical castration therefore holding the little baggers that are dependent on testosterone. The other baggers that do not depend on T and that may be more aggressive in type, will continue its doubling, probably not producing much of the PSA serum. The oncologist should not stop the Lupron but add more blockades to avoid the bandit from advancing. This will be done once the chemo effect ends and refractory is declared. Typically they start Zytiga or Ketokonazole (much cheaper) that together with Lupron manage long additional periods of survival.

You do understand that cure may not be at reach of your friend.

All tests are important to ascertain the status, the effect and the efficacy of the treatment. These may be expensive and some doctors just avoid doing them when the case is very advanced. His oncologist is treating the situation (PSA for verifying any advancement of the case) not the problem (the efficacy of the treatment).

Best,

VG

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