My husband is in excruciating pain from the numerous pca bone mets on the spine, shoulder, chest and is now doing 20 IMRT sessions for palliative pain relief. We have done several chemo combination over the past 5yrs but cancer just kept progressing. This is his first ever radiation since diagnosis because we were told by the RO that only when there is pain that we can do radiation. However, pains escalated very quickly. Husband is having a difficulty getting onto that radiation bed before every session. He is on strong oral pain meds but still having lots of pain. He tried fentanyl patch but didnt like the side effects so he is on oxycodone tablets round the clock.
I want to ask if you have similar experience with having very painful mets and IMRT helped with those pains. Also, how many sessions will it take for the pains to get better? TIA
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dvcarola2
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Long time, just yesterday Jhaz and I were talking about you guys, wondering how's all.
"...the RO that only when there is pain that we can do radiation."
Oh, I received radiation (SBRT) at Dana Farber, Boston, MA for two different sites - neither were for pain, just a result from PSMA scans, prostate area and left scapula.
There's plenty of evidence now, aggressive early combinational treatments are favorable to "wait and respond".
Remember, my diagnosis: PSA 1000+, screaming with pain, large tumor extending the prostate. Was not shy to fire the oncologist and get results!
Hi George, nice to hear from you. Fyi, the bone mets were already scattered everywhere upon diagnosis in 2018 so Dondee was not oligometastic at that time thats why our uro and onco said that systemic therapy is the way to go. Hence, we have done oral meds, iv chemo, lu177 since then.
Hi, dvcarola2. My experience with radiation therapy is that it needed to END before my met pain was relieved. Like your husband, my pain did not decrease. It increased exponentially until I could not get on or off the radiation bed by myself, nor could I get up from my own bed without difficulty - I ended up putting a handle on my bed's headboard, and even then it was hard to battle through the excruciating pain.
In hindsight, this makes sense: Even though IMRT is very focused on the tumor, there is still unavoidable collateral damage to healthy tissue and nerves. Only after everything had healed from the insult of radiation did I feel any relief. Good luck. - Joe M.
Thank you Joe for sharing your experience. Pain is getting worst now after only 3 sessions and he needs to do 17 more. We need to assist my husband getting in and out of bed as he cant walk properly due to horrible pains.
Btw, may I know what kind of radiation you did and how many sessions? What meds helped you with your pains? Husband is getting 2x dexamethasone 4mg along with oxycodone. Have you tried morphine? Morphine is being offered to my husband by his pain mgt doctors but because he kept vomiting on fentanyl patches, he is scared to take morphine.
Did they try Zofran for the nausea? That works for us. Fentanyl patch really helps with his widespread Mets. Oxy for breakthrough pain. He has the worst time with Xtandi. We have to use diclofenac to control the resulting arthralgia. It’s always such a balancing act.
We have ondansetron for the nausea but its too expensive (about $10 equivalent per tablet here) so will try zofran instead. We tried fentanyl patch but my husband slept for days, didnt eat much and keep vomiting so we will try morphine and see if he can tolerate it well.
I pray you find something that helps. Everybody responds differently to all these medication‘s. It’s such a balancing act when you get to the later stages. My guy is on about 14 or 15 medication‘s a day. I have to watch everything like a hawk to make sure they help without too many side effects. Sometimes the doctors want to keep going because it’s working, but if you have no quality of life there’s no point. That’s the constant battle and balancing act.
He’s so tired of the brain fog, too. We had the conversation again tonight about castration. Chemical castration has so many bad side effects, especially brain fog. But very few men will go through with actual castration to stop the production of testosterone. And in the end, it’s always their decision. All we can do is research and make recommendations. Be the support and the cheer leader. And while we live it with them, we cannot live it for them. Blessings on you and your husband.
I'm not an expert but I believe the side effects of chemical castration are due to the lack of testosterone which will be the same after surgical castration. However, it would mean he doesn't need the regular injections if they are bothersome.
The fatigue and some other side effects would be the same, but from what I researched the brain fog wouldn’t be as bad. But again, everyone responds differently. But with drugs you can stop. Surgical castration can’t really go back. With this disease it’s often times picking the best bad choice.
At this stage, managing pain is the goal. Possible addiction is the least of his problems if that is his worry. Hope he finds relief with the right meds soon. I know it's terrible to see him in such pain.
I signed up for 20 IMRT sessions: 4 days a week for 5 weeks on 2 tumors on my spine at C2 and L4. This may be difficult to hear, but absolutely nothing helped my pain - maybe it took the edge off, but that is all. Plus, seemingly like your husband, my tolerance for strong pain medication is low and almost always leads to nausea and vomiting. Patches of anything seem to be horrible for me. I gave up and simply took NSAIDs (ibuprofen, aspirin).
I have not taken morphine for my cancer, but when I was hit by a car as a pedestrian, I did have a local injections in my leg and a periodic oral solution. Honestly? It was great.
A few things to check:
Ask about the IMRT dosing. Although a bad time is to be expected, your husband needs to be able to get through it. I didn't know any better, or I would have asked if dose modification was possible. After all, this is supposed to be for pain relief; it is not curing the cancer.
Ask to try oral morphine (it's usually a 4 hour dose) and just see if morphine may work without the nausea. Fentanyl is more potent than morphine.
Likewise, ask why dexamethasone vs. prednisone. I understand the doctors' choice of dex + fentanyl, but it seems like it's all just too much for your husband. Maybe dialing back on the steroid and painkiller strength is warranted to get some benefit rather than causing more difficulty.
Im sorry to hear that the 20 IMRT sessions didnt help with your pains from the spine mets. How are you managing your pains now that it didnt work? Im scared that is also a possibility for us but were still hoping and praying that it will help alleviate the pain on the lumbar and hip areas. The right shoulder and shoulder blade are also very painful now so those will be the next targets. I dont know what will happen to other areas because chemo has been stopped while radiation is ongoing.
Btw, its good to hear that you can tolerate morphine well so I will try to order that and see if there will be no nausea and vomiting in our case.
I will ask abt dexa vs prednisone but RO said this is to help with the inflammation while radiation is ongoing.
I usually manage my pain with stretching, massage, and a lot of heat (saunas and heating pads). Sometimes I simply accept it. As you see with your husband, this is all an effort that cannot be avoided, and pain relievers don't work with me or make me sick.
I have a portable steam sauna that I live by. I've also used prescription strength capsaicin (the "hot" compound found in chili peppers) cream to good effect ( a friend with MS uses it). Good luck!
My husband has portable infrared sauna too which he used everyday when he was still very mobile. But now he is just constantly on heating pads which we carry around everywhere. He is about to try cannabis oil and cannabalm soon so hope that helps too.
My father is 87 and has extreme pain with lesions on his sacrum and hip. He was also very active as my mom and he just moved into (for 3 months but he came back for a new treament) a new condo in Florida that he worked physically too much on, creating extreme sciatic pain.
He's OCD, and a type A++ personality that cannot sit - EVEN when he has pain.
He was hospitalized due to the sciatic pain, but then they found that the cancer had not progressed any more, and sent him home with Hydrocodone that he said made him feel horrible, and constipated, and angry.
They are here now in Michigan and my father's only pain med he takes 2-3 X daily is a medical marijuana gummy that is 5 mg THC, and 10 mg CBD.
He is like a NEW person on these and says he feels no "buzz" and seems completely "normal". He has never been a drinker, but says he doesn't even feel like he had a drink...so literally no high feeling at all!
Normally he has a very light appetite, and has lost a lot of weight with many things making him nauseous just to think of!
Now, he is moving around slowly with little pain, and been hungry and eating regular sized meals a couple of times a day, about an hour and a half after taking the gummies.
I hope that this is something people consider, as there are no side effects, and my dad said "Keep em coming." Luckily in Michigan, I can go to the dispensary, and get recreational marijuana gummies...not sure what he'll do in Florida when they go back next week after his 5 days of radiation....we shall see how he does...and I will continue to pray, and keep him focused on things to look forward to!
Blessings to all of you that are caring for anyone that is ill, and many healing prayers to those with cancer. May they be pain free, and healed.
Thank you for sharing your dad’s experience. I dont know if we have those gummies here but my husband tried the cbd oil before when he didnt have pains yet. He didnt like the side effects and its making him depressed. I will try to find other sources maybe with thc that can help with the pains.
Praying for your dad and all our warriors here who are going through difficult times with pca.
The process to get your Medical Marijuana card in Florida is fairly straight forward. Google the state MM Registry site and there are step by step instructions.
Thank you but we are not from US. We are located here in the Philippines. I was able to get high THC and high CBD oil and it helps with getting a good night sleep at least.
Read my posts. I had 4 rounds of Lute177 that totally irradiated my Mets but needed 20 rounds of IMRT for my prostate. I've maintained a PS A of 0.01 with Lupron for the past 19 months.
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