I really need some input, I am currently between my first and 2nd dose of Lu 177. My last PSA was 3 weeks ago, had risen to 63 from 1.6 two months prior. I am currently taking percocet 5 325 mg and went back on dexamethadone 2 mg every 12 hours. Yesterday I doubled up on oxy I had spoken to my care team friday and they suggested keep a pain journal, Fun Fun.... My current treatment plan has been long awaited and extremely important for its sucess, considering SOC has been exhausted. My conern, legitimate or otherwise is they may discontinue my treatment program if I divulge the pain is increasing despite heating pad or ice or hand held Massager and upping my oxy dose by double not to mention tsking it every 3 hours insted of every 6 hours. I am basically unable to funtion normally errands etc. The metastatic pain is deep in my lower back as well as partially in my neck, it reminds me of when I have had to be radiated in other areas in the past. Although will this get me booted and then sure, I would be free from pain but will I have killed my last viable option to zonk some some cancer tumors. Please give me your always, honest opinion. My last scan Was 2.5 months ago and showed no progression prior to lu 177. The Psma variety. Thankyou too all weighing in.
I am in absolute pain this weekend. - Advanced Prostate...
I am in absolute pain this weekend.
Man, I was sure hoping that no news from you was good news! So sorry for your suffering.
Have you had any recent MRIs to your spine? My knowledge is very limited but I did a search on here for Lutetium pain and there were lots of hits. Fentanyl patch was suggested and that the pain might be unrelated to metastasis but muscular skeletal related.
You are correct, I suggested the Patch on Friday to my team, and they suggested keep the journal, to stage upward on pain meds. First they need to see if by adding or the decrease of the time in between taking is effective, so its a process, meanwhile back at misery ranch. Everything would be peachy without this pain, My nausea and other side effects are minimal. Thankyou g wife.
First of all, be very careful with increasing your oxy dose. A potential sude effect is stopping your breathing.
Your back pain reminds me of pain I had from a lesion pressing on a nerve root. I would ask for an mri of your back. They may be able to irradiate a lesion and get rid of the pain. My guess is that the treatment may have inflamed a lesion, which is now physically affecting a nerve.
One more comment. Massage and heat relieve muscle tension, ice reduces nerve inflammation. When I've had direct pain, or associated muscle pain recently, it has always turned out to be nerve inflammation. Ice worked, heat and massage didn't.
I tried a ice pack for the first time last night, alternative back to heat. Im gonna try Elimination of the heat, although the heat has some sort soothing effect, on one hand, and also a mild uptick in pain Level on the other hand.
That make, sence, only increasing oxy from 1, 5 325 to two every 4 hours, hopefully the stop breathing side effect doesnt occur with this low of dose. Thankyou
You might think about going to the ER to get help with pain management and an MRI. I think you said you getting treated at the Seattle Cancer Care Alliance. Id suggest an ER with one of those hospitals. Harbor View gets all the serious cases like car accidents, so you'll won't get treated as quickly.
I have been considering just that. Actually my care is at knight cancer in oregon, about two hours away from portland oregon. There is a small hospital here no waiting although my issues are undoubtedly above their pay grade. A Mri is a great idea.
If Marijuana is available, try it.
Not into pot. It has a negative effect on me. Cbd yes
Try it as OIL. And you can decide the level of CDB and THC.
You could go to or be referred to a legit pain management doctor, physiatrist or otherwise who does X-ray guided epidural injections. If it related to spinal nerve root compression it will show on the MRI. Also the location and distribution of the pain can be very indicative. As is a careful neurological exam for focal weak muscles, numb areas and reflexes. If so, the epidural will prove it by giving near complete, if temporary, pain relief. Focal RT may still be needed if compression due to cancer. Otherwise micro decompression can do wonders too.
Thankyou I will keep ajj this in mind
Very sorry for your suffering... I'm certainly no expert maybe increase the Dexamethasone to 4mg for 5 days. MO may be able to offer some insight to regain control of the pain. Here is a link from PubMed specifically regarding LU177-PSMA 617 pubmed.ncbi.nlm.nih.gov/321... Hope you feel better soon
Very informative articles. Thanks!
Im gonna ask about the now thxs
I am very sorry for what you are dealing with.
This type of pain seems almost unreachable. I have nerve damage due to SBRT in 2018 in my left leg. Since the damage showed itself last August, I have fought lightening type nerve pain. Prior to my radiation treatment for a lesion in my left femur, the pain could be extreme and was sensitive to elevation changes (the higher the elevation, the greater the pain...a disabling type of pain).
I use Lyrica to help with nerve pain but I am not sure how much worse it would be without it but it can be severe at times, preventing me from sleeping. I am not sure what is driving your pain. Is it the treatment or the bone lesions...or both?
I have found that certain meditations can help my pain but it has to be when pain is low, for me to be able focus. I use my phone with Bluetooth headphones with noise-cancelling feature. I find "Be the Mountain" is the most valuable for me. When the pain is bad, I can repeat to myself " be the mountain" and the pain decreases or subside momentarily.
A pain management clinic may be advisable and research on alternative medicines. I have read that CBD product may be effective but do your own research on this and check with you doctors. I doubt using this with the other very strong pain meds is advisable.
We are with you in spirit and wish we could offer more. Some of the above may be helpful in combination. Many of us are heading down the same path as you and can only imagine the unbearable pain you are enduring. Have your family and/or friends help you with research, because you are unlikely to be able to maintain the focus.
Take care and let us know how you are doing...also if you find something to reduce your pain level. We are routing for you!
I will update. Thankyou so much
I think you can get palliative IMRT radiation against bone pain while on Lu177 therapy.
I will ask tommorro, they are pretty rigid on their protocols
Thankyou my friend
Is it possible that this current pain results from your Lu177 treatment? I'm thinking of death of many metastatic cells, concentrations of necrotic tissue, probable inflammation? Pain is pain, but sometimes it comes from a "positive" reason.
Thsts my positive theory as well.
We had alot of pain too after treatments. We heard it’s not uncommon. It did get better. You can see my other posts about it.
CBD oil tincture. 400mg day spread every 4hrs.No THC for now.
I use drops on 1/2 oyster cracker under tongue.
Helps ME.
2Dee
Fuck! I’m sorry Costa! Hang in there brother . May this poison kill the pc but save the host . Many prayers for healing 🙏❤️
You need a shapely 27 year old blond in a bikini and high heels walking up and down your bare back......When you're finished with her send over to my house.....Thanks and feel better...
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 03/14/2022 7:05 PM DST
Ok tri-pod😳✌️I’m thinking that massage is healing .
I will send before she performs any bare back walks. 10 years ago would of sounds better
Tell her to tip toe...........(that's the 10 year special).....
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 03/16/2022 7:26 PM EST
Please be careful and get a scan to determine the cause of the pain. My brother started out with pain that radiated to his ribs. He did not feel it in his back initially. He let it go three weeks by just trying to self medicate with Oxy. He was trying to get into a car T trial and did not want anything to interfere so he let the pain go. As it turned out he ended up in screaming pain unable to walk. He got to the ER in time and they did emergency surgery to relieve spinal compression. It is a miracle he is even walking with a walker now. My advice is don’t self diagnose and try to figure it out. Hopefully it has nothing to do with spinal compression but better to be safe than sorry
Oh boy . Sorry about bro .. seeing anybody hit by this is hard … 💔🙏
I appreciate the concern, although I am in conversation with multiple docs daily, they have questioned me specifically about the common symptoms associated with spinal cord compression. I do not check those boxes except pain. All the meds have been prescribed, I am very concerned about taking strong pain killers. Thankyou.
Why? You have pain, help yourself. No need to suffer.
How are you doing Costa, any ease up on the pain? 🙏🏻
Yes there is 15mg of morphine and 2 percocet and 4mg of dexamethadone later. I understand I can receive palative radiation while on lu 177 great news. Thank-you for asking. Ihope all is well in your camp.
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