› Forums › General Melanoma Community › Any treatment options left for brain mets?
- This topic has 33 replies, 10 voices, and was last updated 12 years ago by
bllowe.
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- April 16, 2012 at 4:37 pm
Hi,
Hi,
My wife is Stage IV diagnosed on 12/5/2011 and since then has done Whole Brain Radiation, Gamma Knife in Feb and has been on Zelboraf since Jan. of this year. She originally had 4 brain mets of various sizes. About a 1 1/2 weeks ago she suddenly lost ability to walk and use her left arm. Doctors did Brain MRI and said that brain mets have started to increase along with multiple new mets. Today, I found out that blood work from Friday showed LDH level back to elevated levels (1700) so assume Zelboraf stopped working. The nurses and doctors are recommending keeping her as comfortable as possible (Hospice) and are saying nothing really left to be done.
Any recommendations on anything further I could persue for her no matter how small the odds are? We just don't want to accept that nothing else can be done. She's 42 and we have 4 kids. Don't want to give up on her….
- Replies
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- April 16, 2012 at 5:05 pm
I feel so sorry for your situation, my husband is also dealing with brain mets and it’s so scary! I know it’s not popular, but have you considered chemo, like temodar to see if that can control the situation. I know it’s not widely viewed as effective long term, but since melanoma is an unpredictable cancer, it may be worth a try if she still wants to pursue active treatment. So, people are combining Ipi/yervoy with temodar/chemo, it’s worth a discussion with your medical team. All the best to you and your family, prayers and strength to all of you, take care of yourself too. Valerie (Phil’s wife) -
- April 16, 2012 at 5:05 pm
I feel so sorry for your situation, my husband is also dealing with brain mets and it’s so scary! I know it’s not popular, but have you considered chemo, like temodar to see if that can control the situation. I know it’s not widely viewed as effective long term, but since melanoma is an unpredictable cancer, it may be worth a try if she still wants to pursue active treatment. So, people are combining Ipi/yervoy with temodar/chemo, it’s worth a discussion with your medical team. All the best to you and your family, prayers and strength to all of you, take care of yourself too. Valerie (Phil’s wife) -
- April 16, 2012 at 5:05 pm
I feel so sorry for your situation, my husband is also dealing with brain mets and it’s so scary! I know it’s not popular, but have you considered chemo, like temodar to see if that can control the situation. I know it’s not widely viewed as effective long term, but since melanoma is an unpredictable cancer, it may be worth a try if she still wants to pursue active treatment. So, people are combining Ipi/yervoy with temodar/chemo, it’s worth a discussion with your medical team. All the best to you and your family, prayers and strength to all of you, take care of yourself too. Valerie (Phil’s wife)-
- April 25, 2012 at 3:48 pm
Hi, just found this site & noticed that there was some discussion re: Temodar. My husband, Bobby (73) has stage 4 Melanoma. He had a superficial spreading mel in 1996 (excised – no further treatment). We had almost forgotten about it until Jan 2010 when it appeared in his right axilla (surgery & radiation). October 2010 had spread to right lung.
Of the few options available, we chose Tamodar (390mg at bedtime) with Zofran taken 30 min. before dosing. He slept well & woke up in the mornings feeling fine.. No side effects at all except a little constipation. It was great! Worked fast to shrink tumors. Held them at bay for over a year.
In March 2012 Lung tumors were growing & an MRI @ MDA Houston showed 2 brain lesions. Soooo…he was no longer a candidate for planned lung surgery. The Brain tumors were zapped with a gamma knife, and that went fine.
Bobby started Zelboraf 960mg 2x daily. By day 12 he had a terrible rash from the top of his head to his knees, and had to suspend the Zelboraf. He's been off for 3 days & is treating the rash – better, but isn't to start back till rash is mostly gone. His dermatologist is saying start back with 1 tablet 2x daily & slowly build back up. His oncologist is saying start back with 3 tabs 2x daily & see if rash comes back.
QUESTION: What have others experienced with reinduction of the Zelboraf?
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- April 25, 2012 at 3:48 pm
Hi, just found this site & noticed that there was some discussion re: Temodar. My husband, Bobby (73) has stage 4 Melanoma. He had a superficial spreading mel in 1996 (excised – no further treatment). We had almost forgotten about it until Jan 2010 when it appeared in his right axilla (surgery & radiation). October 2010 had spread to right lung.
Of the few options available, we chose Tamodar (390mg at bedtime) with Zofran taken 30 min. before dosing. He slept well & woke up in the mornings feeling fine.. No side effects at all except a little constipation. It was great! Worked fast to shrink tumors. Held them at bay for over a year.
In March 2012 Lung tumors were growing & an MRI @ MDA Houston showed 2 brain lesions. Soooo…he was no longer a candidate for planned lung surgery. The Brain tumors were zapped with a gamma knife, and that went fine.
Bobby started Zelboraf 960mg 2x daily. By day 12 he had a terrible rash from the top of his head to his knees, and had to suspend the Zelboraf. He's been off for 3 days & is treating the rash – better, but isn't to start back till rash is mostly gone. His dermatologist is saying start back with 1 tablet 2x daily & slowly build back up. His oncologist is saying start back with 3 tabs 2x daily & see if rash comes back.
QUESTION: What have others experienced with reinduction of the Zelboraf?
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- April 25, 2012 at 3:48 pm
Hi, just found this site & noticed that there was some discussion re: Temodar. My husband, Bobby (73) has stage 4 Melanoma. He had a superficial spreading mel in 1996 (excised – no further treatment). We had almost forgotten about it until Jan 2010 when it appeared in his right axilla (surgery & radiation). October 2010 had spread to right lung.
Of the few options available, we chose Tamodar (390mg at bedtime) with Zofran taken 30 min. before dosing. He slept well & woke up in the mornings feeling fine.. No side effects at all except a little constipation. It was great! Worked fast to shrink tumors. Held them at bay for over a year.
In March 2012 Lung tumors were growing & an MRI @ MDA Houston showed 2 brain lesions. Soooo…he was no longer a candidate for planned lung surgery. The Brain tumors were zapped with a gamma knife, and that went fine.
Bobby started Zelboraf 960mg 2x daily. By day 12 he had a terrible rash from the top of his head to his knees, and had to suspend the Zelboraf. He's been off for 3 days & is treating the rash – better, but isn't to start back till rash is mostly gone. His dermatologist is saying start back with 1 tablet 2x daily & slowly build back up. His oncologist is saying start back with 3 tabs 2x daily & see if rash comes back.
QUESTION: What have others experienced with reinduction of the Zelboraf?
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- April 16, 2012 at 6:19 pm
I agree with Phil. You have options, but you must act quickly because of brain involvement and the effect on your wife's motor skills.
I think your medical team has made their decision. If you wish to fight this, you should seek a melanoma specialist at a center of excellence to give you a second opinion.
To educate yourself on treatment approaches for brain mets, I recommend that you watch the webinar at
http://www.melanomaintl.org (click on webinars)
It's recent data and will equip you to talk in a more educated and forceful fashion with your doctors.
Best wishes to your wife. My prayers are with you.
cltml
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- April 16, 2012 at 6:19 pm
I agree with Phil. You have options, but you must act quickly because of brain involvement and the effect on your wife's motor skills.
I think your medical team has made their decision. If you wish to fight this, you should seek a melanoma specialist at a center of excellence to give you a second opinion.
To educate yourself on treatment approaches for brain mets, I recommend that you watch the webinar at
http://www.melanomaintl.org (click on webinars)
It's recent data and will equip you to talk in a more educated and forceful fashion with your doctors.
Best wishes to your wife. My prayers are with you.
cltml
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- April 16, 2012 at 6:19 pm
I agree with Phil. You have options, but you must act quickly because of brain involvement and the effect on your wife's motor skills.
I think your medical team has made their decision. If you wish to fight this, you should seek a melanoma specialist at a center of excellence to give you a second opinion.
To educate yourself on treatment approaches for brain mets, I recommend that you watch the webinar at
http://www.melanomaintl.org (click on webinars)
It's recent data and will equip you to talk in a more educated and forceful fashion with your doctors.
Best wishes to your wife. My prayers are with you.
cltml
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- April 17, 2012 at 5:06 am
I understand Siteman is part of Washington University School of Medicine which is a comprehenvie center, but as serious as this is you really should go to as soon as possible for a second assessment.
The UT MD Anderson Cancer Center
1515 Holcombe Blvd
Houston, TX 77030
(800) 392-1611 (USA) / 1-713-792-6161
http://www.mdanderson.orgIt's the closest to you.
You could also contact the NIH ( they would pay for transportation and perhaps pay for all or part of housing if and after you are aceepted. There are trials that may permit her with brain mets…one is http://www.cancer.gov/clinicaltrials/search/view?cdrid=697721&version=HealthProfessional&protocolsearchid=10329191
Trials always makes acceptions so ask your oncologist to check into clinical trials and tell them you are not ready to give up…sometimes they do a lot of things using compassionate use…don't take No for a final answer…but do not wait to do this….Praying for the best!
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- April 17, 2012 at 5:06 am
I understand Siteman is part of Washington University School of Medicine which is a comprehenvie center, but as serious as this is you really should go to as soon as possible for a second assessment.
The UT MD Anderson Cancer Center
1515 Holcombe Blvd
Houston, TX 77030
(800) 392-1611 (USA) / 1-713-792-6161
http://www.mdanderson.orgIt's the closest to you.
You could also contact the NIH ( they would pay for transportation and perhaps pay for all or part of housing if and after you are aceepted. There are trials that may permit her with brain mets…one is http://www.cancer.gov/clinicaltrials/search/view?cdrid=697721&version=HealthProfessional&protocolsearchid=10329191
Trials always makes acceptions so ask your oncologist to check into clinical trials and tell them you are not ready to give up…sometimes they do a lot of things using compassionate use…don't take No for a final answer…but do not wait to do this….Praying for the best!
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- April 17, 2012 at 7:01 am
Trial-wise, 3 trials that specifically target melanoma patient with brain mets are:
A Study of Vemurafenib in Metastatic Melanoma Patients With Brain Metastases (but you say she's already failed Zelboraf)
I've been told by NIH/NCI that they have an across-the-board rule of no more than 3 brain mets for most of their trials. I've asked because I've had 5 brain mets.
There have been a number of articles lately about Ipilimumab showing as much benefit for brain tumors as for tumors elsehwhere in the body. But it's a slow-acting immune therapy, it needs time to act when it acts.
Gamma Knife can target many small tumors (up to a roughly a dozen) under the right circumstances.None of these may necessarily be great options for your wife, I don't know. I'm sorry to know you are facing these kinds of choices / dilemmas.– kyle -
- April 17, 2012 at 7:01 am
Trial-wise, 3 trials that specifically target melanoma patient with brain mets are:
A Study of Vemurafenib in Metastatic Melanoma Patients With Brain Metastases (but you say she's already failed Zelboraf)
I've been told by NIH/NCI that they have an across-the-board rule of no more than 3 brain mets for most of their trials. I've asked because I've had 5 brain mets.
There have been a number of articles lately about Ipilimumab showing as much benefit for brain tumors as for tumors elsehwhere in the body. But it's a slow-acting immune therapy, it needs time to act when it acts.
Gamma Knife can target many small tumors (up to a roughly a dozen) under the right circumstances.None of these may necessarily be great options for your wife, I don't know. I'm sorry to know you are facing these kinds of choices / dilemmas.– kyle -
- April 17, 2012 at 7:01 am
Trial-wise, 3 trials that specifically target melanoma patient with brain mets are:
A Study of Vemurafenib in Metastatic Melanoma Patients With Brain Metastases (but you say she's already failed Zelboraf)
I've been told by NIH/NCI that they have an across-the-board rule of no more than 3 brain mets for most of their trials. I've asked because I've had 5 brain mets.
There have been a number of articles lately about Ipilimumab showing as much benefit for brain tumors as for tumors elsehwhere in the body. But it's a slow-acting immune therapy, it needs time to act when it acts.
Gamma Knife can target many small tumors (up to a roughly a dozen) under the right circumstances.None of these may necessarily be great options for your wife, I don't know. I'm sorry to know you are facing these kinds of choices / dilemmas.– kyle
-
- April 17, 2012 at 5:06 am
I understand Siteman is part of Washington University School of Medicine which is a comprehenvie center, but as serious as this is you really should go to as soon as possible for a second assessment.
The UT MD Anderson Cancer Center
1515 Holcombe Blvd
Houston, TX 77030
(800) 392-1611 (USA) / 1-713-792-6161
http://www.mdanderson.orgIt's the closest to you.
You could also contact the NIH ( they would pay for transportation and perhaps pay for all or part of housing if and after you are aceepted. There are trials that may permit her with brain mets…one is http://www.cancer.gov/clinicaltrials/search/view?cdrid=697721&version=HealthProfessional&protocolsearchid=10329191
Trials always makes acceptions so ask your oncologist to check into clinical trials and tell them you are not ready to give up…sometimes they do a lot of things using compassionate use…don't take No for a final answer…but do not wait to do this….Praying for the best!
-
- April 17, 2012 at 3:01 pm
Thank you for the recommendations. I did call our doctor at Siteman Cancer Center and asked about Temodar and they agreed to try that. (Amazed that it wouldn't of been suggested by them in the first place!) Because of my wife's need to stay on steroids to control her symptoms, they will not put her on Yervoy.
Anyone hear of some success stories with Temodor? Any hope is theraputic at this point….
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- April 17, 2012 at 3:01 pm
Thank you for the recommendations. I did call our doctor at Siteman Cancer Center and asked about Temodar and they agreed to try that. (Amazed that it wouldn't of been suggested by them in the first place!) Because of my wife's need to stay on steroids to control her symptoms, they will not put her on Yervoy.
Anyone hear of some success stories with Temodor? Any hope is theraputic at this point….
-
- April 17, 2012 at 3:01 pm
Thank you for the recommendations. I did call our doctor at Siteman Cancer Center and asked about Temodar and they agreed to try that. (Amazed that it wouldn't of been suggested by them in the first place!) Because of my wife's need to stay on steroids to control her symptoms, they will not put her on Yervoy.
Anyone hear of some success stories with Temodor? Any hope is theraputic at this point….
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- April 17, 2012 at 9:13 pm
There have been some success stories with Temodar – I would try to do a search. I know of at least one that did the treatment and is still NED.
Best wishes to the both of you (my hubby is the same age as your wife, and I'm not giving up on him either!),
Maria
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- April 17, 2012 at 9:13 pm
There have been some success stories with Temodar – I would try to do a search. I know of at least one that did the treatment and is still NED.
Best wishes to the both of you (my hubby is the same age as your wife, and I'm not giving up on him either!),
Maria
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- April 17, 2012 at 9:13 pm
There have been some success stories with Temodar – I would try to do a search. I know of at least one that did the treatment and is still NED.
Best wishes to the both of you (my hubby is the same age as your wife, and I'm not giving up on him either!),
Maria
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- April 20, 2012 at 3:55 am
Not to be a Debbie Downer but I was on Temodar from QD for 5 days out of every 28 from July 09- March 10…didn't do much but make me throw up…It may have helped progression but it is short lived. It didn't shrink anything. It sounds like she needs agressive chemo.
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- April 20, 2012 at 3:55 am
Not to be a Debbie Downer but I was on Temodar from QD for 5 days out of every 28 from July 09- March 10…didn't do much but make me throw up…It may have helped progression but it is short lived. It didn't shrink anything. It sounds like she needs agressive chemo.
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- April 20, 2012 at 3:55 am
Not to be a Debbie Downer but I was on Temodar from QD for 5 days out of every 28 from July 09- March 10…didn't do much but make me throw up…It may have helped progression but it is short lived. It didn't shrink anything. It sounds like she needs agressive chemo.
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- April 17, 2012 at 5:14 pm
What about Bio-CHEM – is it too late to try that ? It's a very tough treatment, and you have to be in somewhat good shape to do it, but I would try ANYTHING at this point. GET TO M. D. ANDERSON if you can ! THE BEST OF THE BEST ON MELANOMA !
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- April 17, 2012 at 5:14 pm
What about Bio-CHEM – is it too late to try that ? It's a very tough treatment, and you have to be in somewhat good shape to do it, but I would try ANYTHING at this point. GET TO M. D. ANDERSON if you can ! THE BEST OF THE BEST ON MELANOMA !
-
- April 17, 2012 at 5:14 pm
What about Bio-CHEM – is it too late to try that ? It's a very tough treatment, and you have to be in somewhat good shape to do it, but I would try ANYTHING at this point. GET TO M. D. ANDERSON if you can ! THE BEST OF THE BEST ON MELANOMA !
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- April 18, 2012 at 1:37 am
contact Fred Eichorn at http://www.ncrf.org…
i know of several people who have come back after brain mets…
one lady i am in contact with…
it's worth a try.. has no side effects… and from what i am told the results are felt in days…
good luck… i hope you call Fred…
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- April 18, 2012 at 1:37 am
contact Fred Eichorn at http://www.ncrf.org…
i know of several people who have come back after brain mets…
one lady i am in contact with…
it's worth a try.. has no side effects… and from what i am told the results are felt in days…
good luck… i hope you call Fred…
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- April 18, 2012 at 1:37 am
contact Fred Eichorn at http://www.ncrf.org…
i know of several people who have come back after brain mets…
one lady i am in contact with…
it's worth a try.. has no side effects… and from what i am told the results are felt in days…
good luck… i hope you call Fred…
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