Hello everyone this is my first post here. I have bone Mets that spread from my stomach cancer. Can I ask did anyone on this had their bone Mets treated as in shrunk/disappeared? What medications have been used please? Thanks to all of you in advance.
Hey Bluesky13, I don’t think they can make them disappear but shrink yes. Some people have radiotherapy to shrink them or reduce pain which is what I had this time round, I’m now taking a oral chemotherapy drug called capecitabine which seems to be doing the trick prior to that I was on palbociclib, have you spoken to a oncologist yet or have you just been told?
Sending a big hug, Jo xx
I have been told that when I was diagnosed. It is devastating but I am trying to deal with it as much as I can. I am on capcitabine too which is helpful I think. It helps with the pain etc. I have heard about an anti body drug that helps to destroy those Mets. Have you heard about it?
ive heard of immunotherapy is it the same?
Similar but works differently I think. I would like to have anything to eleminate it. Bone Mets are tricky! don't you agree?
Yes they are tricky!
I have mets in my cervical, thoracic, lumbar and sacrum, oh and a spot on my rib!
My spine fractured last summer with 3 vertebrae going and the pain was... I can’t explain... I didn’t know where I wanted to be... but I had some radiotherapy and the pain got worse due to a flare up, but with the help from a Macmillan nurse I got my pain meds sorted and had a lovely girl from occupational health who came to see what I needed to help me round the house, I got a stool for my shower, a recliner chair for my front room and a grabber for when I can’t bend to pick things up, I’m only 50 but felt 108 when it was all delivered hahaha, but I’ve learned to ask for help, I’ll tell you that was hard as I’m so independent but I’m trying to be kind to myself but still struggle some days when they aren’t good days I get frustrated, I’ve shrank from 5’2 to 4’11 due to the fracture that has been hard, supermarket shopping and high shelves, my car, I need a cushion to see over the steering wheel!
Anyway, ask for help when you need it... I don’t see the nurses anymore now that I’m better and be kind to yourself ( I’m still trying ) xx
I admire you for your courage. You are such a warrior. You are doing damn good! Are your Mets shrinking? How long you had them for?
Sorry about this, Bluesky13. My husband (52) has a single bone metastasis in his 4th lumbar vertebrae, from colorectal origin (the primary was never found, though; the origin was determined from markers). He had "standard" radiation therapy last May, 3 weeks at 5 visits/week. Things got better (less pain) for a while, but pain returned in November. An MRI was inconclusive so his oncologist ordered a new PET scan, which showed that even though the tumor (mostly lytic adenocarcinoma) had "evolved" since last Spring, there was still cancer activity, and the margins were ragged, never a good sign. This time, he traveled to a larger hospital (OHSU in Portland, Oregon) where he recently underwent Stereostatic Body radiation Therapy (3 fractions). After extensive reading, I found that although SBRT will not "cure" the cancer (at this point in medical research, once cancer is in the bone, it cannot be cured), it can zap it enough that it will remain under control.
I guess the treatment depends on the number and location of bone mets; if yours are resistant to standard radiation (as is often the case from colorectal cancer, not sure about stomach) then SBRT is a very promising approach, especially if there aren't too many metastases.
Best of luck XXXXX
Hi Montana girl
Thanks for your response, very kind. You hear some stories where bone Mets go away with chemotherapy? Real stories seemingly. Heard anything about that before?
Yes, there are lots of cases where known bone mets are shrunk down to nothing.
However, what Montana is referring to is that even if they get rid of the visible met, the patient isn't classed as cured. They can't remove the bone, and there is no scan that will distinguish one cell type from the next. So while they know that there is cancer in the bones, they are never 100% positive that they have got rid of every single cell of cancer in every bone, everywhere.
So technically, once it hits the bones you're classed as incurable. However in practical terms, that doesn't necessarily mean it's continuing to grow or trying to kill you, or even that it's there at all. It's just the Drs covering themselves from liability.
Hope that helps clarify it!
Thanks very much, this is very valuable. I heard some people live with it / control it for years? Do you agree? Have you heard the same?
Yes and no.
One thing to remember is that just because it has spread to the bones, that doesn't mean it has become bone cancer. It is still whatever your original cancer is/was, it's just metastasised to the bones. So it still generally behaves like the original cancer would, and so can still usually be treated like the original cancer would.
My one that has spread to my bones is thyroid cancer. (I've got womb cancer too, hence the phrasing) I was diagnosed 6 years ago with it, and by the time they had found it, it was already in my bones. Lots of them. Through the thyroid cancer specific treatment of RAI, we've got rid of most of my mets and shrunk the others that aren't shifting. Right now, my oncologist expects old age to get me rather than my thyroid cancer. I'm 37.
So the problem with looking at anything to do with bone mets is that it encompasses every single cancer out there that has the potential to spread to the bones. Hence the yes and no answer I gave at the beginning. Some cancers are often easily controlled, some aren't. Some people may find their mets easy to shrink, while someone else with exactly the same cancer may find that nothing works. It's partly why there is no cure for cancer yet. Because it is a mutation of our own cells. And as each of us has DNA unique from anyone else, each mutation is unique. Making it really hard to predict what will and won't work sometimes when it comes to treatment.
But there are plenty of treatments out there to try. So fingers across the country are crossed that something works for your family!
Thanks very much for taking the time to explain all of this. This is kind of you. I have read your profile story, you are a hero :) there is certainly so much to learn from you.
I'm not sure I'd go that far on either point, but thank you and you're welcome. Lol
No, I haven't found anything online about this. Although Bret's oncologist did say that chemo would definitely help in keeping things under control. From what I understand, the active cancer cells will get turned into inactive cancer cells... It's still quite fuzzy to me, originally I thought that cancer cells would die and be replaced by new bone cells, but if the cancer cannot be cured once it's in the bones, then I probably misunderstood? Anyway, people can live a long time with secondary bone mets, so hopefully a complete cure will be found in the very near future and you can benefit from it!
Ha, just read your posts Lass. Very helpful, thanks!
Sorry for the late reply I’m currently in hospital with pneumonia, I was quite poorly but on the mend slowly my breathing is so much better with antibiotics and oxygen...
As for my mets they are all stable and haven’t grown apart from the ones in my thoracic which fractured my spine, thing is I always had problems with that area of my back, I was a gymnast from 7 to age 16 so that won’t of helped and after the birth o my first son I had pain there while I was breastfeeding so went to see my gp and I got an X-ray and it showed at age 25 I had osteo arthritis, I had intensive phisiotherapy but the vertebrae had fused together so I’ll always wonder if my bones were already weak was the reason the cancer broke through... but all the others had stayed the same so I was happy with that, hope you are doing ok
Love Jo xxx
Sorry to hear pneumonia has you in her embrace at the moment Jo.
Glad you're in the best place though, and the meds seem to be working and you're improving.
Long may it continue!
Thanks lass, docs just been and I feel loads better but my bloods aren’t showing the same.
Im away to have another chest X-ray shortly to compare with the other and a heart echo.
I also have a rash on my legs which they said was an allergic reaction to the antibiotics but now they are saying it looks vascular... me head is done in, prodded and poked every hour... can’t wait to go home... but at least this time the docs didn’t ask if I wanted resuscitating or do I want to sign a DNR so I’m pleased with that! Hahah
Hope your ok Lass xx
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