Brain mets found - what do I do now?

Bennette · May 2012

I just joined in late Feb or March when my mom was diagnosed with RCC Stage IV at that time she had a softball size tumor in her kidney which they removed that kidney and adrenal gland in mid March and they knew she had multiple tiny lung mets and mets in her left femur and a couple places in her spine. They treated her leg and 2 areas of the spine with radiation to help with the pain. However, they then found two more areas of her spine, which they decided to wait on treating to see if the Votrient would help - she started this drug 3 weeks ago. She was given calcium treatments to bring down her calcium levels (as that we the reasoning for her confusion levels) and then they started tappering her off the steriods. As Foxhd had said in some of his posts, "be the squeaky wheel" - I kept telling them that she was confused from time to time in situations she shouldn't be and that she wasn't following instructions as well as she previously (before any of this started) and that this was continuing even though she was taking less pain meds. She has been living with me since late March and so I was the only one noticing these things. Last week they decided to do an MRI of her brain. They found lots of tiny mets in her brain, which were apparently not causing as much trouble while on the steriods as these drugs reduce the inflamation the tumors cause. Now they want to do whole brain radiation and that is way scary, the side effects sound terrible and I can't find solid information on what life is like and for how long after radiating the brain this way. PLEASE if you know anything about this, please help. We have our consult with the radiation doc next Thurs, May 31st and then we have to decide what to do.

garym · May 2012

Radiation...
Bennette,

I have no experience with radiation therapy of the brain other than watching a neighbor go through it for mets from bladder cancer and I don't remember reading anything about it from anyone here so the only advice I can offer is to trust the docs. Is there a possibility that the Votrient or other drugs might help?

Wish i could be of more help,

Gary

Bennette · May 2012

garym said:
Radiation...
Bennette,

I have no experience with radiation therapy of the brain other than watching a neighbor go through it for mets from bladder cancer and I don't remember reading anything about it from anyone here so the only advice I can offer is to trust the docs. Is there a possibility that the Votrient or other drugs might help?

Wish i could be of more help,

Gary

other drugs
Gary,

The doctor says that the drugs (she is currently on Votrient) do not have a good success rate with brain mets. Apparently, the blood brain barrier does not allow enough of the drug to reach the area. So if we don't do the radiation treatment, they believe the tumors will continue to grow and thus the damage they and the swelling from them cause will continue to increase. I just don't know if the damage from the cancer growing would be faster than the damage from the radiation to the brain. Of course we want her to live as long as possible, but she and we are concerned with the type of living she will be doing with either scenario. It is so frustrating, we were all starting to feel better, becasue everything else seemed to be getting better and no this!

I too tried to search past info and didn't find much on brain mets and the treatment of them, which also scares me!

Bennette

Texas_wedge · May 2012

Bennette said:
other drugs
Gary,

The doctor says that the drugs (she is currently on Votrient) do not have a good success rate with brain mets. Apparently, the blood brain barrier does not allow enough of the drug to reach the area. So if we don't do the radiation treatment, they believe the tumors will continue to grow and thus the damage they and the swelling from them cause will continue to increase. I just don't know if the damage from the cancer growing would be faster than the damage from the radiation to the brain. Of course we want her to live as long as possible, but she and we are concerned with the type of living she will be doing with either scenario. It is so frustrating, we were all starting to feel better, becasue everything else seemed to be getting better and no this!

I too tried to search past info and didn't find much on brain mets and the treatment of them, which also scares me!

Bennette

Brain mets
I'm about to learn a little on this subject but meanwhile you may want to find out about CyberKnife or gammaknife which are technologies for highly focused high intensity radiation treatments for brain mets.

On a topic as technical as this you will probably find out more quickly on the KIDNEY-ONC mailing lists than here, where the focus in more on support than on detailed technical information.

Texas_wedge · May 2012

Bennette said:
other drugs
Gary,

The doctor says that the drugs (she is currently on Votrient) do not have a good success rate with brain mets. Apparently, the blood brain barrier does not allow enough of the drug to reach the area. So if we don't do the radiation treatment, they believe the tumors will continue to grow and thus the damage they and the swelling from them cause will continue to increase. I just don't know if the damage from the cancer growing would be faster than the damage from the radiation to the brain. Of course we want her to live as long as possible, but she and we are concerned with the type of living she will be doing with either scenario. It is so frustrating, we were all starting to feel better, becasue everything else seemed to be getting better and no this!

I too tried to search past info and didn't find much on brain mets and the treatment of them, which also scares me!

Bennette

Brain mets
By the way, i wonder whether there are/will be different modalities of administration of Votrient that might overcome the blood-brain barrier problem?

Bennette · May 2012

Texas_wedge said:
Brain mets
By the way, i wonder whether there are/will be different modalities of administration of Votrient that might overcome the blood-brain barrier problem?

support vs information
Good question. I will add that to my list of things to check into and to ask the doctor at the consult. I have never used the mail lists but will try to figure that out to see if I can find more information.

I am really hoping to find some survivors or caregivers of survivors that have gone through this, becasue the information and statistics don't really tell you what it is like in real life. This is the biggest factor in decisions for her, she really wants to know which option gives her the best chance to live her life in a manner that she is ok with. I feel that she is depending on me to sort it all out and I am just as scared and uncertain!

Bennette

Texas_wedge · May 2012

Bennette said:
support vs information
Good question. I will add that to my list of things to check into and to ask the doctor at the consult. I have never used the mail lists but will try to figure that out to see if I can find more information.

I am really hoping to find some survivors or caregivers of survivors that have gone through this, becasue the information and statistics don't really tell you what it is like in real life. This is the biggest factor in decisions for her, she really wants to know which option gives her the best chance to live her life in a manner that she is ok with. I feel that she is depending on me to sort it all out and I am just as scared and uncertain!

Bennette

Brain mets
Bennette, if you're not already into KIDNEY-ONC you'll probably want to join the list. You'll find, I think, some hundreds of messages about brain met treatment there at e.g. http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE from which you should be able to glean a lot of useful info. for your Mum.

I'm having a CT scan next week, then driving my Wife from Edinburgh to London to see her favourite cousin who is a long-term melanoma survivor. Unfortunately his melanoma metastasised to his liver and he's been on the latest drugs for that. Just in the past few days they've discovered he now has brain mets which manifested in cognitive deficits, like your Mother's and he's just had radiotherapy. He's about to be moved to a different hospital where they will give him more intensive therapy, doubtless CyberKnife or Gamma - we're about to find out and I will soon be able to see for myself how that goes. He's a very special person so we're praying it does him good but his condition is much worse than your Mother's so we're not confident about the outcome.

Bennette · May 2012

Texas_wedge said:
Brain mets
Bennette, if you're not already into KIDNEY-ONC you'll probably want to join the list. You'll find, I think, some hundreds of messages about brain met treatment there at e.g. http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE from which you should be able to glean a lot of useful info. for your Mum.

I'm having a CT scan next week, then driving my Wife from Edinburgh to London to see her favourite cousin who is a long-term melanoma survivor. Unfortunately his melanoma metastasised to his liver and he's been on the latest drugs for that. Just in the past few days they've discovered he now has brain mets which manifested in cognitive deficits, like your Mother's and he's just had radiotherapy. He's about to be moved to a different hospital where they will give him more intensive therapy, doubtless CyberKnife or Gamma - we're about to find out and I will soon be able to see for myself how that goes. He's a very special person so we're praying it does him good but his condition is much worse than your Mother's so we're not confident about the outcome.

brain mets
Thanks! I didn't know about the list before. I have created a password and will start searching for info. Sorry to hear about your wife's cousin, maybe it will be better than expected.

If you do find out anything or have any observations to share after you return, that would be great. I just feel lost and am worried I don't even know what questions to ask when we meet with radiology next week. I am sure the list serve will help give me a place to start, thanks for the heads up and the link.

Wish you the best during your trip!

Bennette

Bennette · May 2012

Texas_wedge said:
Brain mets
Bennette, if you're not already into KIDNEY-ONC you'll probably want to join the list. You'll find, I think, some hundreds of messages about brain met treatment there at e.g. http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE from which you should be able to glean a lot of useful info. for your Mum.

I'm having a CT scan next week, then driving my Wife from Edinburgh to London to see her favourite cousin who is a long-term melanoma survivor. Unfortunately his melanoma metastasised to his liver and he's been on the latest drugs for that. Just in the past few days they've discovered he now has brain mets which manifested in cognitive deficits, like your Mother's and he's just had radiotherapy. He's about to be moved to a different hospital where they will give him more intensive therapy, doubtless CyberKnife or Gamma - we're about to find out and I will soon be able to see for myself how that goes. He's a very special person so we're praying it does him good but his condition is much worse than your Mother's so we're not confident about the outcome.

list serve
Texas_wedge,

Thank you soooooo much! I have received tons of info on the brain mets and the radiation treatments for the brain from the list serve you referred me to. I have also had a few people email me directly to share their personal experiences and answer my questions.

I feel much more prepared for the consult on Thursday and I also called her oncolgist back to ask more questions, which the physician's assistant did this morning. I am not sure what we will decide to do yet, but I will be sure to post it after we see the radiology doc and get the rest of the info specific to my mom.

Apparently, there is a lot of difference in how people respond based a lot on the size of the mets. Since I was so insistant that she was not thinking normally, they caught them while they were really small, even though they are numerous. That is why the oncologist believes the radiation will work for her, whereas with larger tumors the radiation doesn't seem to be as effective. They also seem to believe she will do well with it, but encourage me to get more side effect specifics from the radiology doc.

Thanks again for the list serve recommendation! Very very helpful.

Bennette

Texas_wedge · May 2012

Bennette said:
list serve
Texas_wedge,

Thank you soooooo much! I have received tons of info on the brain mets and the radiation treatments for the brain from the list serve you referred me to. I have also had a few people email me directly to share their personal experiences and answer my questions.

I feel much more prepared for the consult on Thursday and I also called her oncolgist back to ask more questions, which the physician's assistant did this morning. I am not sure what we will decide to do yet, but I will be sure to post it after we see the radiology doc and get the rest of the info specific to my mom.

Apparently, there is a lot of difference in how people respond based a lot on the size of the mets. Since I was so insistant that she was not thinking normally, they caught them while they were really small, even though they are numerous. That is why the oncologist believes the radiation will work for her, whereas with larger tumors the radiation doesn't seem to be as effective. They also seem to believe she will do well with it, but encourage me to get more side effect specifics from the radiology doc.

Thanks again for the list serve recommendation! Very very helpful.

Bennette

Brain met treatment
Thanks for your kind words Bennette - it's a great pleasure to know one has been of help. We're all in this together. I like to quote the French philosopher Teilhard de Chardin's words "Fuller being is closer union" and I guess it's equally apt the other way round - 'Closer union is fuller being'.

By the way, I think your Mother and your Siblings should be very proud of the efforts you're making to get up to speed on these difficult issues in order to help to arrive at the best possible decisions. It's very apparent that the same thought has struck the key members on the listserv where I see you've been getting well-informed help from some of the brightest and best, as you fully deserve.

Bennette · May 2012

Texas_wedge said:
Brain met treatment
Thanks for your kind words Bennette - it's a great pleasure to know one has been of help. We're all in this together. I like to quote the French philosopher Teilhard de Chardin's words "Fuller being is closer union" and I guess it's equally apt the other way round - 'Closer union is fuller being'.

By the way, I think your Mother and your Siblings should be very proud of the efforts you're making to get up to speed on these difficult issues in order to help to arrive at the best possible decisions. It's very apparent that the same thought has struck the key members on the listserv where I see you've been getting well-informed help from some of the brightest and best, as you fully deserve.

List serve
Texas_wedge,

Just had to share this, my youngest sister called yesterday and she apparently found the same list serve. She was reading one of my messages and thinking, "wow, this sounds exactly like my mom" and then she realized it was me! At least now I know I am not the only one searching for more info before we see the doc on Thursday! Even the internet can be a same world!

These means of sharing info has been sooooo helpful during this process, getting signed up and talking to all of you has been the best decision I made through this ordeal!

Bennette

allyhendrikson · May 2012

Bennette said:
List serve
Texas_wedge,

Just had to share this, my youngest sister called yesterday and she apparently found the same list serve. She was reading one of my messages and thinking, "wow, this sounds exactly like my mom" and then she realized it was me! At least now I know I am not the only one searching for more info before we see the doc on Thursday! Even the internet can be a same world!

These means of sharing info has been sooooo helpful during this process, getting signed up and talking to all of you has been the best decision I made through this ordeal!

Bennette

how did it go?
Just checking in to see how your visit with the oncologist went and whether you feel any better about the entire treatment process and options. How was the dynamic between you and the oncologist? No matter what kind of cancer you have, it's so important to have a treatment team that you trust!

Texas_wedge · May 2012

Bennette said:
List serve
Texas_wedge,

Just had to share this, my youngest sister called yesterday and she apparently found the same list serve. She was reading one of my messages and thinking, "wow, this sounds exactly like my mom" and then she realized it was me! At least now I know I am not the only one searching for more info before we see the doc on Thursday! Even the internet can be a same world!

These means of sharing info has been sooooo helpful during this process, getting signed up and talking to all of you has been the best decision I made through this ordeal!

Bennette

List serve
That is an amusing story Bennette and a pleasing one too (that your sister is also looking out so well for your Mom).

It certainly is a small world, even on the Web - I constantly come across familiar faces on a number of different cancer sites that I belong to and, as you've proved for yourself, casting one's nets wide is a good idea in this enterprise!

All the best to you all.

Bennette · May 2012

Texas_wedge said:
List serve
That is an amusing story Bennette and a pleasing one too (that your sister is also looking out so well for your Mom).

It certainly is a small world, even on the Web - I constantly come across familiar faces on a number of different cancer sites that I belong to and, as you've proved for yourself, casting one's nets wide is a good idea in this enterprise!

All the best to you all.

Consult is Thursday
We haven't had the consult yet, it is on Thursdays, if I said Tuesday earlier, I apologize - I was a bit distraught that day.

I have found out tons of information. Numerous people have contacted me with their stories and results. I found that sometimes you can get doctors to do more than they are normally willing, so we may try that approach.

The thing I am trying to figure out right now is about a new piece of radiation equipment called TrueBeam. Apparently, KU has one now (article dated May 22, 2012) but I don't know if it is set up and in use yet. This is suppose to deliver all types of radiation treaments and is equiped with RapidArc technology. I think this might enable them to treat smaller brain mets and possibly a greater number than the other types of treatment. I just can't find any specifics on the number of tumors that can be treated.

If anyone knows anything about this equipment let me know. I am printing out what I do find and taking a folder to the appointment on Thursday!

I will definitely let you all know what we decide. I did end up talking to my mom about some of these things and the side effects. I think she is leaning toward treatment, it appears that letting them grow is about as bad as the long term effects of WBRT - making it a sooner or later decision. It also appears that if she doesn't do radiation treatment, they will keep her on steriods and she hates them and doesn't want to be in a wheel chair or get irritable with her great-grandchildren. So now it is a matter of whether we can get something other than WBRT out of the doc!

Brain mets found - what do I do now?

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