Update - Advanced Metastatic Prostate Cancer

FinishingGrace

Wow. I had no idea.

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

Hair

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

Predinisone

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. 

VascodaGama

The bodyguard

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

VascodaGama said:

The bodyguard

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.

Agree

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

Letting it go

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 thinking. 

Grinder

Oh yeah...

"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

Thanks Grinder

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

FinishingGrace said:

Thanks Grinder

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.

DNA please

Can we clone you?

FinishingGrace

Update

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

Estrogens

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

Hot Flashes Getting Worse, PSA down

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

Exercise

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

Old Salt said:

Exercise

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. 

It's hard isn't it?

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.

VascodaGama

Hot-flashes equals an alarming flag on something not functioning

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

VascodaGama said:

Hot-flashes equals an alarming flag on something not functioning

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 

Clarification

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

Old Salt

FinishingGrace said:

It's hard isn't it?

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.

To limit boredom

How about

A puppy

Volunteer work (library, food kitchen etc)

FinishingGrace

Old Salt said:

To limit boredom

How about

A puppy

Volunteer work (library, food kitchen etc)

Good ideas...

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.

FinishingGrace

VascodaGama said:

Hot-flashes equals an alarming flag on something not functioning

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 

I will.

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

A matter for concern but not to become anxious

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