› Forums › General Melanoma Community › Update – IPI & Brain Mets
- This topic has 24 replies, 5 voices, and was last updated 14 years, 4 months ago by
mombase.
- Post
-
- July 29, 2011 at 2:19 am
Hey All,
Jason just finished his 2nd dose of IPI today. So far no side effects.
Unfortunately we found out yesterday that he now has at least 4 brain lesions. He had a CT last Friday and they were seen on that. So Brain MRI tomorrow and then we decide between WBR or Gamma knife. Our radiation oncologist is great and he's making sure things happen fast.
Hey All,
Jason just finished his 2nd dose of IPI today. So far no side effects.
Unfortunately we found out yesterday that he now has at least 4 brain lesions. He had a CT last Friday and they were seen on that. So Brain MRI tomorrow and then we decide between WBR or Gamma knife. Our radiation oncologist is great and he's making sure things happen fast.
Our oncologist did say that Jay's bloodwork from Wednesday shows an increase in lmphocites, which is a positive sign that his body is having a response to IPI. So fingers crossed. Our hopes are that if the radiation can take care of the brain mets then hopefully IPI will kick in before any more show up.
Luckily he is having no symptoms of brain mets, so they're hoping they caught them early.
The pregancy is going well, 10 weeks now. Due date is Feb 2012, every part of me is hoping and praying that IPI kicks the beasts butt so he's here to enjoy the baby with me.
keep fighting,
em
- Replies
-
-
- July 29, 2011 at 3:19 am
Em,
This must be so difficult with the extra addition of you being pregnant. Sounds like your radiologist is working with you to make everything happen as quickly as possible. It also sounds good that his lymphocites have increased.
Sending cyber hugs tonight,
Linda
-
- July 29, 2011 at 3:19 am
Em,
This must be so difficult with the extra addition of you being pregnant. Sounds like your radiologist is working with you to make everything happen as quickly as possible. It also sounds good that his lymphocites have increased.
Sending cyber hugs tonight,
Linda
-
- July 29, 2011 at 12:33 pm
that's very unfortunate news about the brain tumors, very sorry to her that. I've been doing a ton of research on whole brain radiation (given my wife's condition) and I have to say the evidence for whole brain radiation efficacy is very weak. You've got to hope the Ipi does the job, otherwise once it's gone to the brain it's about tumor management, not cure. And gamma knife or cyberknife show superior results to WBRT with less loss of brain function. So really press your radiation oncologist about the choices. And talk about how the resulting brain inflammation from either form of radiation will be dealt with – the steroids typically administered after to deal with brain swelling and inflammation are usually a counter to any biological therapy. So if he's not presenting symptoms, maybe consider letting the Ipi run its course as ong as possible?
I'm no doc or professional, just raising questions, all of which I'm raising with our oncologists. Good luck.
-
- July 29, 2011 at 12:33 pm
that's very unfortunate news about the brain tumors, very sorry to her that. I've been doing a ton of research on whole brain radiation (given my wife's condition) and I have to say the evidence for whole brain radiation efficacy is very weak. You've got to hope the Ipi does the job, otherwise once it's gone to the brain it's about tumor management, not cure. And gamma knife or cyberknife show superior results to WBRT with less loss of brain function. So really press your radiation oncologist about the choices. And talk about how the resulting brain inflammation from either form of radiation will be dealt with – the steroids typically administered after to deal with brain swelling and inflammation are usually a counter to any biological therapy. So if he's not presenting symptoms, maybe consider letting the Ipi run its course as ong as possible?
I'm no doc or professional, just raising questions, all of which I'm raising with our oncologists. Good luck.
-
- July 30, 2011 at 8:53 pm
Hi NickMac56,
I am wondering if you could help me out. I cannot locate the research information regarding pros and cons of whole brian radiation. I looked in the archives and nothing showed up for me. Since this is the path my oncologist wants me to take first and I meet with the radiation oncologist for the first time this coming Thursday, I want to make sure I am asking the necessary questions. I had one melanoma tumor that was surgically removed a month ago and I have several lung mets that have not been addressed as of yet. Thanks!! ~Cristy
-
- July 31, 2011 at 12:49 pm
Here are a couple..it's diffcult to find controlled studies that compare WBRT after surgical resection to SRS after surgical resection. It's also complicated by the fact that presence of extracranial disease matters and so do other performance factors (age, gender). It's also complicated by whether you are looking at overall survival 9OS) as outcome or local contril (emergence of tumor at surgery site).
http://www.irsa.org/metastatic_tumors.html
scroll down to WBRT
http://www.auntminnie.com/index.asp?sec=ser&sub=def&pag=dis&ItemID=92864
this article ilustrates the difficulty of chosing – wieghing the difference between SRS (gamma knife or cyberknife v WBRT). Because many of the studies do not include efect of toxicity on the brain of the WBRT (and diminished mental cognition).
http://www.redjournal.org/article/S0360-3016(04)02271-0/abstract
http://www.sciencedirect.com/science/article/pii/S0360301607011790
-
- July 31, 2011 at 12:49 pm
Here are a couple..it's diffcult to find controlled studies that compare WBRT after surgical resection to SRS after surgical resection. It's also complicated by the fact that presence of extracranial disease matters and so do other performance factors (age, gender). It's also complicated by whether you are looking at overall survival 9OS) as outcome or local contril (emergence of tumor at surgery site).
http://www.irsa.org/metastatic_tumors.html
scroll down to WBRT
http://www.auntminnie.com/index.asp?sec=ser&sub=def&pag=dis&ItemID=92864
this article ilustrates the difficulty of chosing – wieghing the difference between SRS (gamma knife or cyberknife v WBRT). Because many of the studies do not include efect of toxicity on the brain of the WBRT (and diminished mental cognition).
http://www.redjournal.org/article/S0360-3016(04)02271-0/abstract
http://www.sciencedirect.com/science/article/pii/S0360301607011790
-
- July 31, 2011 at 1:13 pm
just read the conclusion
http://www.medscape.com/viewarticle/710096
October 7, 2009 — Patients with brain metastases who were treated with whole-brain radiation therapy in addition to stereotactic radiosurgery were found to be at greater risk for cognitive decline, but did not show improved survival over surgery alone, according to a study published online October 2 in the Lancet Oncology.
http://www.ncbi.nlm.nih.gov/pubmed/17710205
I have also been researching use of whole brain radiation versus treatment with cortocosteroids alone and there is no obvious overall survival advantage.
In my wife's case she has extracranial disease which is not respnding to treatment – so quality of life is a high criteria. That is why we will opt for SRS v. WBRT for control of other brain tumors – because as she says, "I don't want to lose my mind".
The bad news is that once it is to the brain it's just a question of "if", not "when".
-
- July 31, 2011 at 1:13 pm
just read the conclusion
http://www.medscape.com/viewarticle/710096
October 7, 2009 — Patients with brain metastases who were treated with whole-brain radiation therapy in addition to stereotactic radiosurgery were found to be at greater risk for cognitive decline, but did not show improved survival over surgery alone, according to a study published online October 2 in the Lancet Oncology.
http://www.ncbi.nlm.nih.gov/pubmed/17710205
I have also been researching use of whole brain radiation versus treatment with cortocosteroids alone and there is no obvious overall survival advantage.
In my wife's case she has extracranial disease which is not respnding to treatment – so quality of life is a high criteria. That is why we will opt for SRS v. WBRT for control of other brain tumors – because as she says, "I don't want to lose my mind".
The bad news is that once it is to the brain it's just a question of "if", not "when".
-
- July 31, 2011 at 6:12 pm
Thank you so much for all of the information…I know how I will be spending most of my day today!!
The bad news is that once it is to the brain it's just a question of "if", not "when".
This sounds like good news…I am thinking you meant the other way around, which leads me to this question:
Do you know why the prognosis is so dire even if there has been only one brain tumor and it was surgically removed?
Thanks for your help! Cristy
-
- July 31, 2011 at 6:12 pm
Thank you so much for all of the information…I know how I will be spending most of my day today!!
The bad news is that once it is to the brain it's just a question of "if", not "when".
This sounds like good news…I am thinking you meant the other way around, which leads me to this question:
Do you know why the prognosis is so dire even if there has been only one brain tumor and it was surgically removed?
Thanks for your help! Cristy
-
- July 31, 2011 at 7:17 pm
If your tumor was not your primary – i.e., it spread from a different location (my wife's started on her back) – that means it has spread to the brain via (usually) the blood, and therefore crossed the blood brain barrier. So if there is one, there is usually the potential for more (think about finding one dandelion on a grass lawn – do you think that will be the only one??). Melanoma brain tumors are pretty radiation and chemo resistant – local recurrence is high. That is why brain tumore treatment is deemed palliative – it's about control, not cure. That is why the NIH won't take you as a clinical trial patient if you have brain tumors for any of their TIL studies – high risk group. Plus you have to be on steroids after radiation, which negates any systemic treatent, so your melanoma advances in other places while your brain is calming down. There are some clinical trials looking at combining chemo and TIL (MD Anderson) but these are early days for evaluating succcess. I won't go on…
-
- July 31, 2011 at 7:17 pm
If your tumor was not your primary – i.e., it spread from a different location (my wife's started on her back) – that means it has spread to the brain via (usually) the blood, and therefore crossed the blood brain barrier. So if there is one, there is usually the potential for more (think about finding one dandelion on a grass lawn – do you think that will be the only one??). Melanoma brain tumors are pretty radiation and chemo resistant – local recurrence is high. That is why brain tumore treatment is deemed palliative – it's about control, not cure. That is why the NIH won't take you as a clinical trial patient if you have brain tumors for any of their TIL studies – high risk group. Plus you have to be on steroids after radiation, which negates any systemic treatent, so your melanoma advances in other places while your brain is calming down. There are some clinical trials looking at combining chemo and TIL (MD Anderson) but these are early days for evaluating succcess. I won't go on…
-
- August 1, 2011 at 11:50 am
Believe me I understand about the worry. We've known my wife has had lung mets since January and we've not been able to have one treatment work, or try anything else since the discovery of her brain mets in April. She gets a brain scan MRI today, and we are hoping when we meet with our doc on Wednesday that it's clean – that we have bought some time with the craniotomy, Cyberknife and Temodar – so that something can be done about the lung mets, or other body mets which have popped up. It's a war on two fronts – so worry is what we do. A friend says my wife is an "aerobic worrier" anyway as a form of exercise – so she is really geting her exercise right now!
But you're right, it is what it is, and each day all day we keep saying, live for today, don't miss a single thing about today.
I wish you the best.
-
- August 1, 2011 at 11:50 am
Believe me I understand about the worry. We've known my wife has had lung mets since January and we've not been able to have one treatment work, or try anything else since the discovery of her brain mets in April. She gets a brain scan MRI today, and we are hoping when we meet with our doc on Wednesday that it's clean – that we have bought some time with the craniotomy, Cyberknife and Temodar – so that something can be done about the lung mets, or other body mets which have popped up. It's a war on two fronts – so worry is what we do. A friend says my wife is an "aerobic worrier" anyway as a form of exercise – so she is really geting her exercise right now!
But you're right, it is what it is, and each day all day we keep saying, live for today, don't miss a single thing about today.
I wish you the best.
-
- July 30, 2011 at 8:53 pm
Hi NickMac56,
I am wondering if you could help me out. I cannot locate the research information regarding pros and cons of whole brian radiation. I looked in the archives and nothing showed up for me. Since this is the path my oncologist wants me to take first and I meet with the radiation oncologist for the first time this coming Thursday, I want to make sure I am asking the necessary questions. I had one melanoma tumor that was surgically removed a month ago and I have several lung mets that have not been addressed as of yet. Thanks!! ~Cristy
- You must be logged in to reply to this topic.