rib metastases
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Patzel,
My sister had to cancel her MRgHIFU (magnetic resonance guided high intensity focused ultrasound) treatment of her rib bone met in order to get going on the PDL1 clinical trial at UCSF this week. Otherwise, it would have delayed her a month and she probably would have lost her spot on the trial.
She also had regular external beam radiation on her rib bone met in the spring and that helped quiet it down for a while.
WillowHi Val,
sorry to hear your dad also has to fight bone mets. They seem to cause more impact on the life than the primary cancer (the cholangiocarcinoma) ever did.
So far I had not heard about tomotherapy (and I thought I had found out about all options) but am trying to get more information about it. Our problem might be the size of the rib met. It is rather large, too large for cyberknife. Do you have any idea about what sizes of bone mets can be treated with the helical tomography?We are also looking into the ablation techniques such as RFA etc. and other options such as cementoplasty. It might just be that a filling with bone cement is not feasible because it’s got to be contained inside the remaining bone. But two ribs have been partially been destroyed, eaten away by the cancer.
He’s had the maximum dose of conventional radiotherapy to the bone met. The initial response was very good, it shrunk and the pain went. But then it started to grow again and the pain came back stronger than before. He’s been on Oxicodone before but had too many side effects. So that’s why he is on Morphine at the moment, which seems to have less side effects in his case but makes him extremely tired. There are so many things he would like to do but often he’s even too tired for a 500m walk.
It is so frustrating to see him in a state like this and then in UK with the NHS things move very slowly (the cancer is growing faster than they make any decisions). The oncologist is a nice person but very young and has imo not a lot of experience. Some treatments on my list (gave her a list with different options last time which she should look into and advise accordingly) she admitted that she’d never even heard about it, like stereotactical radiotherapy or HiFU… so we had to organise getting the medical files and CT scan images to consult with the cyberknife team in a private hospital ourselves. Standard treatments like Bisphosphonates weren’t considered…
She’d happily just increase the Morphine and painkillers regularly which I think is a disgrace. I don’t think we are yet at the point where this is the only solution. It’s like sedating the patient instead of trying to treat. There won’t be curative treatments but only palliative ones but at least more options should be explored.The more I think of it, the more it upsets me… sorry for venting here… but like today: he insisted on cutting the grass (he won’t let me do it) which is not really a demanding task, the grass being only 3cm long and the petrol lawnmower not being heavy but afterwards that was him knackered and in agony again having to top up with additional liquid Morpine…
Hi Patzel, my dad has had bone mets along his spines and ribs since March this year. Besides chemo, radiation seems to be the only option to shrink/kill the tumors thus lessening the pain. He just had a few sessions of tomotherapy at the hospital. We were told that it takes time to show its effects. We also spoke to the anesthesiologist about other pain relief options, such as numbing the nerves around the tumors (cryoablation, ultrasound etc) but was told radiation is probably the best and longer term solution. My dad gets good and bad days… He’s already on morphine and oxocodine etc, but sometimes he would still have attacks of massive pain. Sorry I am not offering much help here, but would like to let you and your husband know that you are not alone. My thoughts are with you.
ValPatzel……..Willow had mentioned for her sister to be treated with magnetic resonance guided high intensity focused ultrasound (MRgHIFU.) I don’t know anything about it, but hopefully she will chime in on this. Finding the balance with medications always is a trade off, lucidity vs. control of pain. I so much hope for your husband to find relief real soon.
Hugs,
MarionHello Dear Patzel, so sorry to read the latest news. My husband had Cyber Knife and this much I remember, the tumor must be 6 cm or under. His was 7cm and they gave him radiation to bring it to 5cm and then did the C.K. You might want to check that out. Teddy’s was not bone mets but the CC returned where it had been before. Best of luck! Thinking about you both.
anyone having same problem? My husband has this along where the drain was (after surgery) and it has now grown to a size of 10 by approximately 4 cm. Was diagnosed late (if we had not insisted on further investigations it might even have been later still), no treatment offered. Finally we could arrange conventional radiotherapy which brought pain relief, but only for a couple of months.
We contacted two cyberknife centres. One has just told me today they can’t do it due to the size. Need to tell my husband the bad news now which makes me feel very sad.We were offered chemotherapy but were also told that the effects of chemo on a bone met would be weak if at all. They are looking into options of cementoplasty now, but we have not yet a response.
Did anybody have the same problem? What treatment was offered? Was any of it successful in treating the pain? My husband is now on 60mg Morphine twice a day plus the normal painkillers (paracetamol and ibuprofen) which makes him extremely tired. But at the moment he’s only got the choice between being either in agony or sleeping all day.
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