› Forums › General Melanoma Community › Cancer equals always waiting
- This topic has 8 replies, 4 voices, and was last updated 9 years, 1 month ago by
maperny.
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- February 16, 2017 at 5:15 pm
Sigh. You ever notice that all we do with cancer as a care giver is wait. Wait for appointments. Wait for tests. And wait for results and then repeat over and over. I’m so darned worried about Shane’s results. We get them Tuesday and my gut tells me his liver and bones and lungs will be better, but not in the brain. The brain will show progression. And if you can’t control the cranial disease then what. I suspect he’s in for another round of whole brain radiation before they switch him to immunotherapy. I don’t even know if the combo is approved in Canada doublet. Anyone know for sure? I’m talking ipi/nivo. They will have to take him off the braf/mek if there is progressiono in the brain. He’s highly symptomatic with neurological symptoms when not on 12mg of Decadron a day. Sorry for my vent. I’m just so tired of waiting.Janis
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- February 16, 2017 at 6:42 pm
I pray for good results for Shane, and yes it's always wait more scans ect. All care givers do the most important job of keeping us going and never give up. I hate going for my results we get called to a room then you waiting and waiting I know when it's bad news has the cancer nurse always comes in . I know now if she not there it's good . Praying for you.
scooby xx
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- February 16, 2017 at 6:42 pm
I pray for good results for Shane, and yes it's always wait more scans ect. All care givers do the most important job of keeping us going and never give up. I hate going for my results we get called to a room then you waiting and waiting I know when it's bad news has the cancer nurse always comes in . I know now if she not there it's good . Praying for you.
scooby xx
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- February 16, 2017 at 9:18 pm
Ugh… the waiting is definitely the hardest part! I also believe you care givers have a much harder time watching a loved one go through this than we do as patients.
Let's hope with all hope that you are "mistaken" and there won't be any additional brain metastasis to deal with. Yes, the brain is of critical importance, and can be quite challenging. I've not heard of a person receiving WBR treatment more than once. That process is typically only used on patients with a large number of mets. If there is cranial progression once again, the next move would be stereotactic radiation… targeted therapy. If there is significant edema, the steriods will be continued, and the most "troublemaker" lesion may be removed surgically. Immunotherapy would follow targeted brain radiation… the time between srs and the start of infusions would be based upon the response of the lesions (the amount of additional edema or bleeding). Immuno drugs can work to contol further brain metastasis…. soooo.. once those little buggers have been zapped, the brain could feasibly remain free of new metastasis.
I don't know how Canada deals with brain metastasis once WBR has been done, and if more than 4 new mets are noted on imaging. Here in the states, there are a number of radiation oncologists doing gamma knife on patients with well over 4 new mets. It's much more effective than whole brain, because it is a much higher dose of radiation to each individual lesion. On top of that, the potential for neurological deficit is much much lower.
Fingers crossed for you and Shane to see good results on Tuesday! And if he happens to need a change in meds… It can't hurt to ask about the combo! Although if he's having a rough time of symptoms right now, the docs may suggest either waiting for the brain to settle, or going with a single agent. Pembro cleaned up the mess in my head… after a buuuunch of gamma. Thankfully it gained FDA approval when it did… those gamma head frames were getting to be far too routine each month.
Hang in there! And although it may be really hard… try to find joy in each day between now and Tuesday's results. The waiting sucks A LOT… but I sometimes find that I'm wishing away too much of my time, and it's far too precious for that. 😉
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- February 16, 2017 at 9:18 pm
Ugh… the waiting is definitely the hardest part! I also believe you care givers have a much harder time watching a loved one go through this than we do as patients.
Let's hope with all hope that you are "mistaken" and there won't be any additional brain metastasis to deal with. Yes, the brain is of critical importance, and can be quite challenging. I've not heard of a person receiving WBR treatment more than once. That process is typically only used on patients with a large number of mets. If there is cranial progression once again, the next move would be stereotactic radiation… targeted therapy. If there is significant edema, the steriods will be continued, and the most "troublemaker" lesion may be removed surgically. Immunotherapy would follow targeted brain radiation… the time between srs and the start of infusions would be based upon the response of the lesions (the amount of additional edema or bleeding). Immuno drugs can work to contol further brain metastasis…. soooo.. once those little buggers have been zapped, the brain could feasibly remain free of new metastasis.
I don't know how Canada deals with brain metastasis once WBR has been done, and if more than 4 new mets are noted on imaging. Here in the states, there are a number of radiation oncologists doing gamma knife on patients with well over 4 new mets. It's much more effective than whole brain, because it is a much higher dose of radiation to each individual lesion. On top of that, the potential for neurological deficit is much much lower.
Fingers crossed for you and Shane to see good results on Tuesday! And if he happens to need a change in meds… It can't hurt to ask about the combo! Although if he's having a rough time of symptoms right now, the docs may suggest either waiting for the brain to settle, or going with a single agent. Pembro cleaned up the mess in my head… after a buuuunch of gamma. Thankfully it gained FDA approval when it did… those gamma head frames were getting to be far too routine each month.
Hang in there! And although it may be really hard… try to find joy in each day between now and Tuesday's results. The waiting sucks A LOT… but I sometimes find that I'm wishing away too much of my time, and it's far too precious for that. 😉
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- February 17, 2017 at 1:41 am
I completely sympathise with how tired you are constantly waiting, Janis. It is so, so hard. After four years of it, I am really tired, too.
I am praying for good results for Shane on Tuesday and that whatever happens you get a good plan going forward.
Watch something to make you both laugh if you can this weekend and try to put out of your mind.
Maria
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- February 17, 2017 at 1:41 am
I completely sympathise with how tired you are constantly waiting, Janis. It is so, so hard. After four years of it, I am really tired, too.
I am praying for good results for Shane on Tuesday and that whatever happens you get a good plan going forward.
Watch something to make you both laugh if you can this weekend and try to put out of your mind.
Maria
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