Neuropathic Foot Pain

Hello Warriors:

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.

Tom

[NIKKIWOOD]

I have the same problem; gabapentin did not work for me, but then I tried Duloxetine, which at least takes the edge off.

[FRTHBST]

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.

[Hidden in reply to FRTHBST]

So appreciate your input thank you

[Hidden in reply to FRTHBST]

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.

[FRTHBST in reply to Hidden]

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.

[Hidden in reply to FRTHBST]

thanks I’ll lay off the alcohol for a while. I don’t really care if I have it at all. Sure appreciate your feedback.

[Hidden in reply to FRTHBST]

Hi FRTHBTST:

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?

Thanks so much for your help.

Tom

[FRTHBST in reply to Hidden]

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.

[Hidden in reply to FRTHBST]

I definitely will. Appreciate your input. Have a great day. Tom

[HikerWife]

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.

[Hidden in reply to HikerWife]

Thank you so much for your input.

[Joeym1040]

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

[Hidden in reply to Joeym1040]

thanks Joey did it really help your foot neuropathy

[Joeym1040 in reply to Hidden]

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.

[Hidden in reply to Joeym1040]

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.

Tom

[Joeym1040 in reply to Hidden]

Anytime Tom. Good luck.

[Hidden in reply to Joeym1040]

Thanks Joey

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????

Thanks,

Tom

[Joeym1040 in reply to Hidden]

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

[Hidden in reply to Joeym1040]

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.

Tom

[Hidden in reply to Joeym1040]

Hi Joe:

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

[Joeym1040 in reply to Hidden]

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

[Hidden in reply to Joeym1040]

So you have 50 mg pills and take 3 at night????

I'm a little worried about taking it during the day. Because of the effects.

[Joeym1040 in reply to Hidden]

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

[Hidden in reply to Joeym1040]

pick up my Pregabalin tomorrow

Thanks

[Hidden]

Thank you

[jtspitfire]

Good luck. Please share your results.

[j-o-h-n]

1 Neurontin/Gabapentin 600mg twice a day for peripheral neuropathy.

1 Duloxetine (Cymbalta) Hcl Dr Caps 30mg once a day (for leg/nerve pain).

Been on this shit for years, works best on both stumps and only hurts when I have pain...

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 06/16/2023 7:30 PM DST

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

Thanks John God bless you

[u302000]

Glad to hear Pluvicto is working for you. did you have to have Chemo prior to getting it?

[Hidden in reply to u302000]

Yes I did. Five doses of doxitaxel. It liked to kill me. Next dose of Pluvicto on the 31st. How about you. Thanks - Tom

[u302000 in reply to Hidden]

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.

Cheers,

Buddy

[Hidden in reply to u302000]

Hi u30

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?

Thanks Tom

[u302000]

Tom,

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.

nature.com/articles/s41467-...

Cheers,

Buddy

[Hidden in reply to u302000]

Hi Buddy:

Wow great information. Have you started your trial?

Thank you so much. - Tom

[u302000 in reply to u302000]

Sorry for the typos. FDA not PFD , NIH not NIA, ...stopping cells doing this, not thin!

[u302000]

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.

How do you handle your post treatment period?

[Hidden in reply to u302000]

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

[u302000]

Will Do. We should try to set up a scorecard as such for the LU177 patients on this Blog.

I new to it but if maybe we start a new topic and just ask Pluvicto (LU177-617) and LU177PNT2002 treatment patients to list:

PSA's at each stage

Original Gleason w/ date

ADT If any w/ date

Original Treatment w/date

mCRPC diagnosis w/ date

Xtandi (or similar) treatment w/data and duration

Doxitaxel sessions w/ date

Lu177 type Treatments w/ dates

[Hidden in reply to u302000]

Agreed - just put it out there... You are such a wealth of knowledge. Thank you

[u302000 in reply to u302000]

6/21 PSA 3.0

5/21 PSA 7.5 Biopsy Gleason (5+5) 10

9/21 PSA 13.4 Start Eligard ADT Quarterly

12/21 Start Proton Radiation Therapy UF PTI Jax, FL

2/22 PSA 0.08 Complete 41 sessions Proton Therapy

5/22 PSA 0.027

8/22 PSA 0.022

11/22 PSA 0.207

2/23 PSA 6.6

3/23 PSMA-PET scan result mCRPC

3/23 PSA 7.3 Xtandi 160mg, Nalterexonem4.5mg daily

5/23 IV- Vitamin C 100gram+ Ozone Treatment weekly

5/23 PSA 25.4

6/23 1st Appointment Dr Danial Thomas, Integrative Oncologist

6/23 1st Appointment Dr Scott Tagawa, LU-177-PNT2002 PK Clinical Trial

for evaluation

[Hidden in reply to u302000]

How do you like Dr. Tagawa?

[u302000]

Only know him by emails but seems responsive. I will meet him in person on the 29th.

Cheers,

Buddy

[Hidden in reply to u302000]

good luck. Keep me posted.