› Forums › General Melanoma Community › Late Stage Spread – Question about Spinal Column Involvement
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mombase.
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- August 12, 2011 at 10:59 am
It's kind of going from bad to worse for my wife. Today she goes in for Gammaknife treatment of the three new brain tumors. Should be a piece of cake and beats a craniotomy (which she has had before). But earlier in the week she felt a pain in her tailbone area, so we squeezed in a visit with our oncologist and he arranged a CT scan (which occurred yesterday) and bone scan (to take place Monda).
It's kind of going from bad to worse for my wife. Today she goes in for Gammaknife treatment of the three new brain tumors. Should be a piece of cake and beats a craniotomy (which she has had before). But earlier in the week she felt a pain in her tailbone area, so we squeezed in a visit with our oncologist and he arranged a CT scan (which occurred yesterday) and bone scan (to take place Monda). He called last night to tell us that in fact the CT scan had found a tumor at the tailbone area (soft tissue) so indeed there was a source of her pain – but that it could be treated with radiation. He then went on to tell me that it appeared there was evidence of cancer in her spinal column. and that was not treatable. He wanted her to go ahead with the bone scan and gammaknife and we go in to see him and discuss it more thoroughly on Tuesday when he has both the bone scan and CT results and he can show us pictures and discuss what we can treat and what we can't.
Obviously untreatable involvement to the spinal column does not sound good in any way, shape or form. I can't find anything much of help online about what that means in terms of symptom progression – other than pain adn eventual death. Anyone else have this or have a loved one who has had it in the spinal column? Are symptoms associated with location? or once it's in the column and it travels and grows it is just a matter of time before it shuts down vital functions. I also assume it means it's a highway to the brain and we can probably expect more there. I know her life expectancy just got very short, but knowing what to expect in terms of symptoms and progression would be very helpful as we assess treatment options. Thanks,
Nick
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- August 12, 2011 at 11:26 am
Nick, sorry to hear of your wife's progression, our son had Melanoma show up up an down his spine, he did get relief from Radiation on 1 painful spot on lower back, it didn't seem to worry him after that so getting a hit on that area will hopefully help. Sometimes Bone mets can sit and not give any pain, they can make bones brittle but there is new drug that can help strengthen bones, sorry i've forgotten the name, it was in the media about 2 months ago and was shown to be superior to Zometa.
As far as untreatable thats exactly what we were told by the Radio Onc, "its only for pain management". We then went to our Medical Onc who said he had heard that Ippi can work on bone mets so you see Nick i have learnt no matter how qualified a Doctor is they are not aware of all the treatment options that are outside their field of expertise.
My advise is see all the Docs in your Medical team ask for options, there are other new treatments other than Ippi in Trials like anti PD-1 or E7080.
best wishes
James
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- August 12, 2011 at 11:26 am
Nick, sorry to hear of your wife's progression, our son had Melanoma show up up an down his spine, he did get relief from Radiation on 1 painful spot on lower back, it didn't seem to worry him after that so getting a hit on that area will hopefully help. Sometimes Bone mets can sit and not give any pain, they can make bones brittle but there is new drug that can help strengthen bones, sorry i've forgotten the name, it was in the media about 2 months ago and was shown to be superior to Zometa.
As far as untreatable thats exactly what we were told by the Radio Onc, "its only for pain management". We then went to our Medical Onc who said he had heard that Ippi can work on bone mets so you see Nick i have learnt no matter how qualified a Doctor is they are not aware of all the treatment options that are outside their field of expertise.
My advise is see all the Docs in your Medical team ask for options, there are other new treatments other than Ippi in Trials like anti PD-1 or E7080.
best wishes
James
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- August 12, 2011 at 12:11 pm
thank you James. She is excluded from these trials due to brain tumors and she doesn't have the right mutations. So trials are out – nothing left for us to do systemically, only surgically or radiation for palliative treatment. But thanks for sharing your son's experience.
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- August 12, 2011 at 12:11 pm
thank you James. She is excluded from these trials due to brain tumors and she doesn't have the right mutations. So trials are out – nothing left for us to do systemically, only surgically or radiation for palliative treatment. But thanks for sharing your son's experience.
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- August 12, 2011 at 1:54 pm
Nick — This is a long shot and I'm not sure this would even apply in your wife's case, but a couple of patients have been treated for cancer in the spinal fluid through an Ommaya reservoir which allows chemo drugs (or IL2) to be fed directly into the spinal fluid. Have you heard abou this?
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- August 12, 2011 at 1:54 pm
Nick — This is a long shot and I'm not sure this would even apply in your wife's case, but a couple of patients have been treated for cancer in the spinal fluid through an Ommaya reservoir which allows chemo drugs (or IL2) to be fed directly into the spinal fluid. Have you heard abou this?
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- August 12, 2011 at 2:43 pm
As Don said, if you do a search of AmyB, you will come up with a few posts that mention the Ommaya reservoir, leptomeningial mets (spelled wrong, should be leptomeningeal, but spelled that way in her post) and someone else named Kevin as well who answered Amy's post as well.
There is also info about the reservoir online.
Michael
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- August 12, 2011 at 2:43 pm
As Don said, if you do a search of AmyB, you will come up with a few posts that mention the Ommaya reservoir, leptomeningial mets (spelled wrong, should be leptomeningeal, but spelled that way in her post) and someone else named Kevin as well who answered Amy's post as well.
There is also info about the reservoir online.
Michael
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- August 13, 2011 at 12:12 am
thanks, I've heard about it. She probably can;t do IL-2 becuase of her brain mets and active CNS disease and the fact she is on steroids. She's on Temodar already. We meet Tuesday to find out how much involvement there is and whether there is any realistic hope of some treatment. He used the word "untreatable" over the phone…
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- August 13, 2011 at 12:12 am
thanks, I've heard about it. She probably can;t do IL-2 becuase of her brain mets and active CNS disease and the fact she is on steroids. She's on Temodar already. We meet Tuesday to find out how much involvement there is and whether there is any realistic hope of some treatment. He used the word "untreatable" over the phone…
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