Fatigue/Pain/Night Sweat/Slide backwards while on Casodex+Lupron

[Sunlight12]

Hi Everyone,

My Dad had been doing wonderfully well on Casodex+Lupron for the last 3 months. His PSA had dropped, he was able to take walks, do some things around the house, had his sleeping pattern close to normal, was gaining weight (a good thing in his case - he is about 20lbs under his normal weight. The loss was concurrent with the PC). Two weekends ago, he took a walking tour and did about triple his normal amount of walking. He slept poorly that night, awoke complaining of pain in his hips/legs and has basically regressed since then to where he was prior to starting the Casodex+Lupron (eating poorly, extreme fatigue/weakness, chills at points, creakiness in his joints). He did sleep well last night and has slept most of today and says the pain is significantly reduced, but he is still incredibly tired. Has anyone had this experience? Is there anything you did that helped? Thanks in advance for any thoughts or suggestions.

Best wishes to everyone fighting the Beast!

Sunlight

Synopsis on my Dad: he is 72, dx 02/2019, started Casodex+Lupron 02/2019. Stage IV PC w significant mets to bone.

[Tall_Allen]

Has he discussed adding docetaxel or abiraterone? Here are the best current options for the newly diagnosed:

pcnrv.blogspot.com/2017/06/...

Unfortunately, fatigue is a major side effect of all those medications.

[Sunlight12 in reply to Tall_Allen]

Thank you very much for your speedy reply, TA. He has not discussed adding either yet - he had an appointment scheduled for last week, which the doctor cancelled and a new one made for early July. I will make a note to ask about those two additions then. It is not the fatigue alone, but the intermittent, sudden and severe onset of it which is concerning me. I don't know if that is typical?

-Sunlight

[tom67inMA]

That doesn't sound right. I recently overdid it with the physical activity, but it only took me a day of rest to mostly bounce back. Exercise is the best way to fight fatigue, but sometimes it does take a bit of a push to get out the door.

FWIW, I have had docetaxel and now am on lupron+abiraterone+xgeva.

[Sunlight12 in reply to tom67inMA]

Thanks so much for the reference point & suggestion, Tom. If he feels at all better tomorrow, I will see if he will try a little light exercise. If he doesn't, we'll touch base with the MO.

-Sunlight

[NPfisherman]

He may be tired from losing sleep the other night...as for his appetite, if he seems depressed, you may try asking his MD about adding remeron at night--2 things--helps sleep and increases appetite...what is his PSA now??---150 at diagnosis.... I reviewed your first post.... adding abiraterone as suggested by TA is a good idea....and if his disease burden is high, he could try docetaxol first and then abiraterone... the fatigue will be an issue...

Another thing, did he have a bone densitometry study? This will reveal his bone strength and if he has osteopenia/osteoporosis. then he could be put on zoledronic acid and Celebrex...again--dual purpose--enhance bone density and OS.... slow disease progress--see below:

onclive.com/conference-cove...

Just a few thoughts....Good luck.....

Fish

[Sunlight12 in reply to NPfisherman]

Thank you so much for your thoughts, Fish! My first thoughts were exactly that - that he needed to "catch up" from losing sleep the last two nights. I was expecting him to bounce back a little faster today than he has, but maybe my expectations are incorrect. I don't think he is depressed at the moment - more frustrated at continuing to feel fatigued, but I will keep an eye on his mood. His PSA was 30 at last check ( last month). I don't think he had a bone densitometry study, but something about osteopenia was mentioned - he may be borderline? I'm sorry - I will have to go back to my notes to get the exact info. If he is, I'll make sure we ask about the Celebrex, etc at the next appointment.

-Sunlight

[Gearhead]

Do you know why your dad is prescribed just Casodex and Lupron? I would think he meets the criteria foe Zytiga (abiraterone). As is discussed a lot in this forum, Zytiga is relatively effective for someone at your Dad's stage, but it's expensive. At 72, and I note you are in CT, I would anticipate that Medicare or some other insurance (e.g., from prior employment or military) would pay most of the cost. Also, given his bone mets, has Xgeva (a periodic injection,) been mentioned by his oncologist. WRT his fatigue and pain, do you think this is due more to his medications or his basic illness (especially the mets)?

[Sunlight12 in reply to Gearhead]

Hi Gearhead,

Thank you so much for the reply! He does qualify for Zytiga, but he wanted to try chemo first and the MO was agreeable, although he had recommended Zytiga. It is indeed expensive and I know that was part of my Dad's consideration. I'm not sure about Medicare or insurance picking it up - it was indicated to us how much we would need to pay and it was substantial. Xgeva has not been mentioned - I will ask about that one at his July appointment. Your last question is a good one. As I think about it, he is acting very much like he did pre-medication, so I'm going to say his fatigue and pain are due to the basic illness rather than the meds. He went weeks with his pain and fatigue mostly well under control and then, it seems like because he got physically fatigued, everything worsened very quickly.

-Sunlight

[Jbooml]

As a recent grad from bicalutamide to Eligard..human gonadotrophin stimulating hormone..ie ADT...to now combination eligard/Zytiga I can attest to the pain each geometrically caused...NOT TO WORRY.

At this stage I would hazard his bones are shedding cancer like so much scabby roadrash....The bones need to heal and in overdoing it....Dad simply pushed the repair backward....It’s natural...I went through it for weeks..testing my limits. If his Mets are mostly boney he’ll be dancing like Nureyev shortly. Trust the meds....they work.

[Bebby1 in reply to Jbooml]

My husband has now just started your exact tx

Thank you

He has found pain has increased

I hope this will settle

[Jbooml in reply to Bebby1]

I did to....Alarmingly...interestingly Bicalutamide produced a significant drop in PSA but no pain...it only started with my eligard shot.

[Sunlight12]

Thank you so much, Jbooml - I really appreciate hearing this perspective and having your experience as a reference point! Dad's mets are mostly boney.

[2dee]

Fatigue seems like a major factor for many of us caused by PCa and by some treatments. Best advice is work on pain so you can sleep. Keep on consistent exercise and diet as if your life depends on it. Well, cause it does.

I have developed pain remedies that mostly work for me so I can get as much sleep as I need.

Treat yourself while you fight this and enjoy yourself, your family, and your friends.

2Dee

[Sunlight12 in reply to 2dee]

Thank you so much for these thoughts, 2dee! Dad was very good about his diet and excellent about his exercise until this last episode. He has felt too poorly the last day or two to do much but sleep. We had remedies that worked well for his pain until this latest incident - this seems to have outrun them. I have been brainstorming on some other ideas for helping him sleep as well - again, we seemed to have a good program there until recently, although I do think the pain was a huge factor in keeping him awake. I will work harder on not letting him have two sleepless nights in a row. I have some ideas for things he can do/add and will keep researching. What you said about working on the pain so he can sleep really hits home.

-Sunlight

[2dee in reply to Sunlight12]

100mg CBD total a day. Drops from dropper = about 20 in 1/2 a dropper. Do the math for the strength in bottle.

If needed, 40-80mg of THC.

Keep doing whatever us prescribed till not needed.

Helps pain and then sleep for me.

2Dee

[Sunlight12 in reply to 2dee]

Thank you, 2dee! I knew CBD was an option, but I had no idea of the dosage. That helps a bunch!

-Sunlight

[Bebby1 in reply to 2dee]

Here in Australia

There is a real reluctance for the oil

Dr says it really only helps nausea

My husband has s lot of side effects

But no nausea

???

[2dee in reply to Bebby1]

Words should have similar meaning world wide. Not a doc, only have my recent personal experience which is quite positive. I have NO prior Cannibis knowledge.

I have to vary dosage and schedule, usually but not always, gets pain down to manageable.

I have no CBD side affects except less pain, more sleep. Taking "too much" just means you spent more than needed.

THC is much different I learned. Too much when working with it for some types of pain quickly becomes noticeable and you cut back like I did seeking that perfect balance.

Keeping them separate to more accurately control dosage and timing of each I feel is important.

Do your own extensive research. Hard to not try to reduce pain...

2Dee

[Sunlight12 in reply to 2dee]

Hi 2Dee,

I just wanted to thank you for the suggestion of the CBD . I got some for my Dad and he said this morning that the last four days (using it) have been the best sleep he's had in months :). I'm so grateful!

-Sunlight

[6357axbz in reply to Sunlight12]

A heavy dose of cannabis at bedtime, preferably a high THC Indica strain, taken sublingually will likely have him sleeping like a baby

[Sunlight12 in reply to 6357axbz]

Thank you for the suggestion, 6357axbz! I will keep that in my list of "to try if neededs"

-Sunlight

[Sunlight12]

Hi SsamO, thank you very much for these insights! I'm glad to know of others who have had a similar experience! We will call his MO a little later this morning and see what he suggests. I'll check with my Dad and see if he has a copy of the radiologists scans so we can make the comparison with his pain sites. Thank you for the link to your scans and story too!

-Sunlight

[Jbooml]

Follow up Q...what is his PSA...fast or slow drop on initiation of ADT.

[Sunlight12 in reply to Jbooml]

His PSA (don't we all wish we were talking about Public Service Announcements?! ) was 150 at dx. It dropped to 30 after 1 month on the Casodex.

[LearnAll in reply to Jbooml]

Jboomi, you ask "PSA drop fast or slow at start of ADT?" Please enlighten. what is significance of fast or slow drop of PSA after starting ADT. Is there an effect on outcome?

[Jbooml in reply to LearnAll]

The only interpretation of a rapid digression of PSA is the likely debulking of hormone sensitive cells. If shear proportional survival has any bearing on geometric progression it seems logical that lower numbers suggest lower risk of a rapid castrate resistant outcome. Just saying

[j-o-h-n]

MO cancelled last week's appointment for sometime early July? I see that your'e calling him/her, while you have him/her on the phone tell him/her you can't wait until July. He/she's got some giblets...I wonder if he/she has a minor toothache could he/she wait 30 days?

They're all Mexican athletes, Bull Throwers....

75 years ago today those brave men saved our freedom, now don't let it dwindle away from us.

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 06/06/2019 5:06 PM DST

[Sunlight12 in reply to j-o-h-n]

They got on the ball! He has blood work and an appointment for this Monday. And even better, he is feeling a bit better today :).

Amen to your comments on the D-Day gentlemen...respect to the rafters for them! And gratitude to all who have defended our great nation.

-Sunlight

[j-o-h-n in reply to Sunlight12]

Great!!! Hope outcome on Monday is GREAT also....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 06/07/2019 12:31 PM DST

[Sunlight12 in reply to j-o-h-n]

Thanks so much, J-o-h-n - the good wishes are always appreciated. Sending many right back to you as well!

-Sunlight