Don't understand: Had my 5th round of... - Advanced Prostate...

Advanced Prostate Cancer

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Don't understand

Zetabow profile image
18 Replies

Had my 5th round of Chemo last Friday, blood numbers are all showing good improvement but the pain hasn't let up at all (mostly pain in Thighs, Ribs and groin area), I'm really struggling and wondering why I'm doing Chemo if my quality of life isn't improving.

Three different types of pain killer and no effect. Paracetmol/codine 6 x 500mg, Tramadol 2 x 100mg and Neurontin 2 x 300mg per day.

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Zetabow profile image
Zetabow
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18 Replies
Tall_Allen profile image
Tall_Allen

If chemo doesn't control the pain, some spot radiation (just one or two treatments) may be more effective.

Zetabow profile image
Zetabow in reply toTall_Allen

I'm wondering if the pain is related to the Docetaxel. Pet scan showed cancer all the way down to the marrow in my legs. I asked about Direct beam radiation for my Ribs last week and Oncologist said it's too spread out to be of any use.

Pain has been reduced since starting Chemo but not as much as I hoped. maybe after last round and everything settles down I'll have a better idea of what to expect. If it wasn't for the blood numbers I would be worried the Chemo wasn't getting on top of the cancer. PSA numbers from 1386 down to 0.4

Tall_Allen profile image
Tall_Allen in reply toZetabow

That's a great response. Hopefully the pain palliation will catch up. Have you discussed Xofigo?

tom67inMA profile image
tom67inMA

Sorry to hear about your pain. Chemo seemed to aggravate my pain, particularly in the first week after an infusion. While my pain isn't nearly as severe as yours, we both seem to be getting improvements in blood markers but not in pain levels.

I do highly recommend doing any exercise you might be capable of. It's very counter intuitive, but sometimes being active provides some pain relief for hours afterwards.

I just finished my chemo, but so far haven't had a miraculous reduction in pain yet. Of course, I have since had fresh shots of Lupron and Xgeva, and tapered off Prednisone, so maybe in a few weeks things will improve.

George71 profile image
George71

Have you thought about Lu-177 .. Dr. Sartor in New Orleans @ Tulane Med. is doing a trial -- it is supposedly good for bone mets.

Zetabow profile image
Zetabow in reply toGeorge71

no trials available where I live, one of the first things I asked about

lincolnj8 profile image
lincolnj8

Hydrocodone/Acetaminophen 5-325 mg Tab Mall works for me. I take as needed. Sometimes go a week without, other times a half a pill to a whole pill especially to sleep. I have stage 4, mets in bones, organs and lymph nodes. Gall bladder area and ribs hurt the most..

Cynthgob profile image
Cynthgob in reply tolincolnj8

Husband did morphine tabs until almost end of chemo. You aren’t supposed to be in so much pain. No problem getting off morphine once pain was gone.

lincolnj8 profile image
lincolnj8 in reply toCynthgob

Wow, poor guy. I feel so sorry for him.

larry_dammit profile image
larry_dammit

I tried most of them. My ribs are the major hurt on me. Finally got on fentenol patch’s. Excuse the spelling. They worked great. Had to quit them as they didn’t work with the Xtandi. Keep trying different stuff. My doctor said from the start he did not want me in pain. Fight that monster 🙏🙏🙏

Hirsch profile image
Hirsch

Conversely, if you want to be chronically constipated and develop a potential addiction to opioid usage start shopping around for someone who will oblige. The drugs mentioned are usually able to do the job.

Good luck.

Kaliber profile image
Kaliber in reply toHirsch

I use Vicodin 5s and dilaudid for pain management, the dilaudid 4mg for break thru pains (shockingly effective ) . used to be after 4 - 5 weeks of Vicodin use , it would just plain stop working and I'd spontaneously withdraw from it. now I can only go for about 5 to 7 days before it stops working and the withdrawal effects set in ( VERY ugly mental issues , shocking excess phlegm attack for several days and various other awful withdrawal unpleasantness ). and like Hirsch said, constipation is a big deal as well. the Vicodin does indeed make my pain life much more tolerable , not totally eliminating it but making me much much more comfortable, a wonderful relief .... still I have to balance the pain management with inevitable medication induced grief that comes when it automatically stops working. it's hard for me to decide which way to go until I just absolutely have to use the opiates. it's a stupid catch 22 thing people should consider. of course the instant obvious answer is to use it for a couple days and stop ( then the pain is back seemingly 5X ) or jack up the dosage I take to overcome the rapid tolerance that builds up for me , and that does work for a just a while and the same withdrawal thing will happen all over again , but when you " up " the dosage , the cliff you fall off of when it stops working is a LOT higher and the withdrawal issues seem dramatically more awful. if I up the dosage, the withdrawal can be so ugly sometimes I feel like I need a ride to the E.R. to make it stop. I never have addiction issues, I can stop using it anytime I want and stay off it permanently ... except for the ongoing pain problem. narcotic dependency is a physiological brain receptor thing that everyone develops from extended use ( not talking about addiction which is quite different ) . dunno if everyone experiences these catch 22 pain issues the same way as I do but it's something a person should consider along the way of pain treatment. I'm danged if I do and danged if I don't ... just my 2 cents worth. yuck .......

Kaliber profile image
Kaliber in reply toKaliber

about THC . for 12 years I was a authorized cannabis grower for a large local medical cannabis collective (one of a many growers ). we disbanded a couple of years ago when recreational started and big business / governmental overview moved in and took over. suffice it to say I have access to " substantial " cannabis medicinal products and strains ( enough to make ANY cannabis clinic owner smile ). for me cannabis pain relief isn't as effective as it seems to be for lots of other people. pretty much in the range of 600mg of Ibuprofen or maybe a couple of Tramodols . still the mental uplift it always gives me lifts me from the dregs . it's 4-20 today's date , time to go get a medicated early start aha ya ah a y ahay aah a

Hirsch profile image
Hirsch in reply toKaliber

great response..thanks good luck..

Hirsch profile image
Hirsch

Agreee

Hirsch profile image
Hirsch

Surely

2dee profile image
2dee

I have great success relieving extreme pain and finally getting some sleep.

1 Norco every 6 hrs (or 2 Tramadol)

25mg CBD every 6 hrs (tincture or drops)

5mg THC every 6 hrs

ALkaline Therapy and ADT using Lupron helped reduce pain after a month or so. PSA drop from >1300 down below <2 meant my CPa stage 4 was slowed down so cancer no longer consuming bone at a prodigious rate.

2Dee

Zetabow profile image
Zetabow

Still not on top of this, now I have bad back pain as well. Doc prescribed Skudexa and I've been taking CBD oil last 3 weeks to no effect. Ribs hurt if I move the wrong way or take a deep breath, Back pain cannot sit or lay down for any period of time, when I get up all the muscles are locked up and I'm walking around like a hunch back.

My wife says I'm lopsided due to Rib pain (right shoulder down) I suspect this imbalance has cause the back pain. I had 2 slipped discs in lower back many years ago and I get pain every now and then but not been this bad for 15 years.

I booked appointment with Doc tomorrow

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