I've just finished my second pluvicto injection and everything seems to be going fine. PSA is going down and I do have mild bouts of diarrhea but that is totally manageable. My 20 year battle with this disease continues. I will never give up .
I continue to have neuropathic foot pain that I believe was caused by chemotherapy. My doctor has got me on 900MG of gabapentin and it doesn't seem to do much good and really upsets my stomach.
I know that some of you have posted on here about an alternative medicine called Pregabalin and also a medicine called Duloxetine. I would be interested in knowing if any of you have tried these other two medicines for your neuropathic foot pain and have they worked better than the gabapentin .
Thank you so much. Always appreciate your candid feedback. Keep on fighting.
I've been using Lyrica (pregabalin) for leg pain. It's supposed to be a "cleaner" drug than Gabapentin, fewer side effects. I only use it at night and it really helps with sleep. Very colorful dreams and a bit of unsteadiness noticeable when I get up several times during the night.
just got my prescription for 75 MG Lyrica. My doctor suggested I take the Lyrica at night and take a gabapentin for a few days during the day to wean myself off of gabapentin. How long before you go to bed do you take the Lyrica? I don’t drink alcohol except maybe one drink at night do you drink it all? And does it affect your Lyrica? Thanks so much for your input. Sure appreciate your help Tom.
I don't drink at all, so uncertain about the effect of a bit of alcohol. I find Lyrica takes awhile to kick in. I usually take it a couple of hours before going to bed. Best of luck with it and hope it helps.
I started the Lyrica last Friday. You're right at least for the First part of my sleep at night my dreams are very colorful. I am weaning myself off of gambopentin and I was wondering if your leg pain goes away completely on the Lyrica? Also, I'm only taking 75 MG 's. I believe you take 150 do you take two pills or one?
I'm only taking 50mg. Theoretically directions specify 3 pills a day. Leg pain is mostly an issue at night. If I take the Lyrica just before bed with 500 or 1000mg of acetominaphen(having some kidney issues so Aleve type medications are contra indicated) I find Lyrica does help with the nerve pain, and acetominaphen helps with an aching feeling that Lyrica doesn't seem to touch. With both I can sleep well between bladder calls. You're welcome and best of luck-let me know how it goes.
My husband just started duloxetine/Cymbalta a few days ago - has been suffering bad nerve pain in his arm from chemo infusion leak 2+ weeks ago. Seems to be taking the edge off. His pcp says it is very good for neuropathic pain, but will take several weeks at least to fully work. Dosage will probably be titrated up. Can cause mild nausea for the first week or so (luckily we have nausea meds for chemo!). It also has anti-depressant effects. Is supposed to have less side effects than gabapentin (which, fwiw, did nothing for my sister's nerve pain either). Perhaps give the duloxetine a try since the gabapentin seems to be doing nothing for you. Good luck.
I take 150mg pregabalin a couple of hours before bed d it does the job. I get my drugs from the VA. Would not give me pregabalin until I declared no relief from 1200mg of gaberpentin. Pregabalin worked for me . Cost co cerns. Goodluck
That's why I take it. Both of my feet are numb except when I go to bed. Then I get burning tingling, and lightning bolts shooting out my toes. So no pain except at night. Gaberpentin dud not help with pain. Pregabalin did and does.
Thank you so much. I'm going to try to get a prescription today in place of my gabapentin. I had to take so much it really upsets my stomach and really does not much for my pain. Sure appreciate your input.
We pick up my Pregabalin today. Did you go off Gabapentin cold turkey or did you wean yourself off so it's not to have a reaction. My doctor suggested to go off over two or three days. How was your experience????
I think I did wean myself off and I was up to 1200mg. Had to wait a week or more for the VA to switch scripts. I never had any side effects, but best to follow Dr,'s advice. I also start pregabalin at 50mg and worked my way up to 150mg to get relief. Really hope ot works for you. Best.Joe
Thanks Joe - my doctor gave me a prescription for 75MG I thought I would start there and then go up to 150. You take it at night correct? Did you have any weird side effects when you started taking it? Sorry for all the questions.
Started my lyrica last Friday. 75 mgs. Take it two hours before bedtime. No real side effects. How long did it take you to move up to 150 MGS and did the side effects change? Today I'm going off of gabapentin Completely. Did the Lyrica stop the pain that gabapentin was supposed to take care of? How long did it take? Sorry for all the questions. So appreciate your input Tom
Don't mind the questions at all. Think I started off at 50mg in morning and 50mg at night. Did nothing. Since my concern was only pain at night discussed with Dr and we decided to to take the 100 at night. Not much relief so bumped me up to 150mg. He mentioned that he had a patient who was on 200mg day. 150mg started to help a few days after starting. Not total relief but enough to let me sleep. Never had any side effects at all that I noticed. Good luck to you and let me know how you make out.Joe
I had 50mg pills at one time, 100mg st one time and now 150m. I always take about 2 hours before bedtime. You might have to experiment a little to see what works for you.Joe
No Doxitaxel. I found away around it via a Clinical Trial with LU177-PNT2002.
It will be 4 treatments 8 weeks apart rather than you Pluvicto's 6 treatments 6 weeks apart. Some pros and cons between the two Lu177 meds.
I have been on the Xtandi for 3 months now and PSA still still rising.
How long were you on the Xtandi(or equivalent) before Doxitaxel and then how long on that before getting Pluvicto? It seems to me a much more beneficial treatment with the Lu177's going after the mCRPC than trying the enhance the ADT treatment with Xtandi and then carpet bomb approach of Chemo specified by current standard practice..
I fly to NYC on the 29th for a second gate for admittance to the Clinical Trian with Dr. Tagawa at Weill Cornell Med School.
I went on Lupron five years ago. PSA went down a little. Then tried Zytiga no luck. Went out straight to doxetaxil. PSA went to .1. Stay there and started to rise. Got to four and went onto ZOFIGO. 6 treatments PSA went down 2.1 and then started to rise again. When I started pluvicto my PSA was 52. After one treatment it dropped to 30. Haven’t had a PSA since but will next week. so there’s two kinds of pluvicto??? This is my 20th year battling the beast so I guess I can’t complain. What is your PSA now?
You have had quite a journey. Glad you have got to Pluvicto. It seems to be a very direct pro-active drug that goes to the CRPC jut as the marker that shows where it in on the PMSA-PET scan. It attaches and gives a direct radiation to the cancer cells and very limited collateral damage. There are not two Pluvictos but there are two variations of LU-177 which is the atom. Pluvicto is LU-177-617 which has a long string of molecules attached. It was PFD approve March 2022 so it has a commercial name. Lu-177 PNT2002 aka LU177-I&T is the same atom with a different set of molecules attached. It has been FDA Fast Tracked which I think means it can be used in larger Clinical Trials. The PNT is for Point Pharma the Drug company developing it and the I&T means it is being developed to be an indicator for PET Scan and Treatment for mCRPC at different dosages I guess.
These two seem like the best treatment available today. I could not find a Dr using Pluvicto in my area and the NIA standard of care required the Chemo to fail before going to it, So I opted for the Clinical Trial version.
The article below offers us great hope for the future in that they think they have found out how the cancer cells become resistant to ADT and feed themselves. They have some hope of stopping the cells doing thin and thus stopping prostate cancer not just delaying it.
I fly up to NYC on the 29th to pass my second interview I hope. When I do they will order the med which may take 4 weeks upon which I fly back up and spend a week in lodging next to the Hospital. They take daily blood and urine samples with is the study purpose to find out how quickly the body eliminates the nuclear med. Then each 2 weeks is more monitoring, hopefully closer at Myrtle Beach (I am in Charleston) and hopefully each of the other 3 8 week treatments and all the intermediate 2 week tests visits can be there. Like Pluvicto, I think, you are radioactive for 7 days following treatment so long distance public travel becomes an issue.
My doctor said I only need to stay away from people for two to three days. He said the key is to drink at least 60 ounces of liquid a day and you should pee it out. So far so good. Mild diarrhea for about a week after injection. Next one on June 30th. So sorry you have to fly to New York versus stay around your home. Please keep me posted. Thanks Tom
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