› Forums › General Melanoma Community › Do you wish WBRT hadn’t been done? Patients and Care givers Please
- This topic has 36 replies, 6 voices, and was last updated 9 years, 1 month ago by
_Paul_.
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- February 10, 2017 at 7:09 am
Adriana has been having increasing weakness in her arms and legs for several weeks now indicating likely advancement of LMD. This past Friday she started having severe lower back pain wrapping around and down her legs. Originally thought it was a pulled muscle strain from leaning back on the bed awkwardly. Pain progressed until it was unmanageable and excruciating. Palative care directed us to the ER twice (spent 8 hrs first time and then 14+ hrs on the return ER visit 10 hrs later when she was ultimately admitted to the hospital this AM. Lumbar MRI during ER visit indicated buildup of CSF cancer cells around the spinal cord in the entire lumbar area but no solid tumor pinching. Thus the cause of the pain. A series of standard radiation sessions is planned for this area to hopefully improve her pain to a point that it can be managed with oral or other relief available while at home. Additional discussion is ongoing (pending tonight's brain MRI) with a proposal of performing WBRT to treat her (at least 3) solid mets in addition to the cancer in her CSF and Meninges. It is understood that none of this is curative and that the only way to potentially attack all of the cancer in her CSF would be to perform entire cerebral/spinal radiation which has been deemed entirely too toxic and negative risk/benefit by all involved. We inquired if GK on the solid tumors only (leaving the rest alone) if in-fact the number is still only three and relatively small in size might be appropriate as a palliative measure only in order to "buy" a bit more time. Not really looking to grasp at straws with this idea but looking at it as an alternative to WBRT and it's related downsides. The Oct, 2015 GK provided an additional 1.25 years. The radiation oncologist offered that this could be entertained although he didn't really seem too keen on it.
In the meantime BRAFi has been halted in order to start radiation as apparently they don't play nice together. One upside she did have one last pembro infusion on Monday which may be of some benefit although the Dr. doesn't feel that it is working and is why that is to be the last. He restarted her on BRAFi that night, had 2 doses before the ER fun began.
Looking for thoughts on WBRT from those that have experienced its downsides vs upside. Our understanding that on the benefit side, it hopefully will provide some improvement or at least arrest the decline in issues with her cranial nerves and pain relief. We will also be keeping in mind that the reality is that she likely has a very limited time left.
I have been doing my best on WBRT research on here tonight but your help is appreciated and a decision needs to be made soon. I really hate this learning as you go about all of this stuff but you do what is necessary. I greatly value the considerable knowledge and experience of this group.
I hope to have the love of my life back home soon. I miss her ;_; :>((
Rob
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- February 10, 2017 at 11:14 am
https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/confirmed-brain-mets#comment-96077 this is from last summer Rob,I hope the links help.Best wishes!!!!Ed
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- February 10, 2017 at 11:14 am
https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/confirmed-brain-mets#comment-96077 this is from last summer Rob,I hope the links help.Best wishes!!!!Ed
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- February 10, 2017 at 11:14 am
https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/confirmed-brain-mets#comment-96077 this is from last summer Rob,I hope the links help.Best wishes!!!!Ed
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- February 10, 2017 at 3:24 pm
Oh, Rob. I am so sorry. I can only imagine having to observe such pain in a loved one, not to mention being forced to confront its reality. Most of the WBR vs SRS stuff I have is more about its use in folks with individual tumors rather than LMD, where of course SRS has proven to be preferred. That's pretty different from LMD and debilitating pain. I guess at this point for myself or my love, I would choose whatever the docs felt would actually help with the pain. I would be asking hard questions of them about what THEY would do if it was THEM or their LOVE….which do they REALLY think (WBR vs SRS) will make a difference in her PAIN???? Then I guess I'd go with what seems best. I will see what I can find in that regard. Love and hugs to two of the bravest peep I know. Love, c
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- February 10, 2017 at 3:33 pm
One other thought re talking to docs….You could ask… Do you see, on her scans, any specific lesions that are clearly in locations that are likely significantly contributing to her current pain? If so, would then the specificity of SRS not be a helpful to that process? OR….Is the disease simply equally diffuse?
Just thinking…c
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- February 10, 2017 at 3:33 pm
One other thought re talking to docs….You could ask… Do you see, on her scans, any specific lesions that are clearly in locations that are likely significantly contributing to her current pain? If so, would then the specificity of SRS not be a helpful to that process? OR….Is the disease simply equally diffuse?
Just thinking…c
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- February 10, 2017 at 3:33 pm
One other thought re talking to docs….You could ask… Do you see, on her scans, any specific lesions that are clearly in locations that are likely significantly contributing to her current pain? If so, would then the specificity of SRS not be a helpful to that process? OR….Is the disease simply equally diffuse?
Just thinking…c
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- February 10, 2017 at 3:24 pm
Oh, Rob. I am so sorry. I can only imagine having to observe such pain in a loved one, not to mention being forced to confront its reality. Most of the WBR vs SRS stuff I have is more about its use in folks with individual tumors rather than LMD, where of course SRS has proven to be preferred. That's pretty different from LMD and debilitating pain. I guess at this point for myself or my love, I would choose whatever the docs felt would actually help with the pain. I would be asking hard questions of them about what THEY would do if it was THEM or their LOVE….which do they REALLY think (WBR vs SRS) will make a difference in her PAIN???? Then I guess I'd go with what seems best. I will see what I can find in that regard. Love and hugs to two of the bravest peep I know. Love, c
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- February 10, 2017 at 3:24 pm
Oh, Rob. I am so sorry. I can only imagine having to observe such pain in a loved one, not to mention being forced to confront its reality. Most of the WBR vs SRS stuff I have is more about its use in folks with individual tumors rather than LMD, where of course SRS has proven to be preferred. That's pretty different from LMD and debilitating pain. I guess at this point for myself or my love, I would choose whatever the docs felt would actually help with the pain. I would be asking hard questions of them about what THEY would do if it was THEM or their LOVE….which do they REALLY think (WBR vs SRS) will make a difference in her PAIN???? Then I guess I'd go with what seems best. I will see what I can find in that regard. Love and hugs to two of the bravest peep I know. Love, c
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- February 10, 2017 at 5:55 pm
Hi Rob,
So sorry to read your post about poor Adriana's pain. I know how hard it is for you, too.
I cannot offer any experience of Juan on WBR as he refused it. But I can tell you what the Drs said to us. When he was diagnosed with LMD and they saw the three brain mets at that point, we asked for SRS for those mets but the Drs did not agree to do it because of the LMD, they said that within weeks there would be others so not prepared to do it.
They offered the IT-IL2 and also WBR. But Juan chose to enjoy as long as he has without either of these treatments.
Saying all this, we have always looked at treatments for pain relief when we have needed to and if the WBR could relieve pain at some point then that could be a different decision.
I think Celeste's suggestions on what to ask the Drs are really good and weighing up potential side effects vs pain management effects is the key.
I really feel for you and Adriana. Saying lots of prayers and hoping the radiation quickly helps the pain.
You are an amazing support for your dear love
Maria
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- February 10, 2017 at 6:49 pm
Thanks all Celeste and Maria our thoughts exactly. Maria has Juan made it to the mountian and your son skiing? -
- February 10, 2017 at 7:53 pm
Yes, we are in Steamboat! Juan is relaxing here, Eduardo went down a black yesterday, so happy with himself!
Juan is managing with his painkillers particularly at night but the embolization they did on rub tumours really did help.
thank you for asking.
thinking of you
maria
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- February 10, 2017 at 7:53 pm
Yes, we are in Steamboat! Juan is relaxing here, Eduardo went down a black yesterday, so happy with himself!
Juan is managing with his painkillers particularly at night but the embolization they did on rub tumours really did help.
thank you for asking.
thinking of you
maria
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- February 10, 2017 at 7:53 pm
Yes, we are in Steamboat! Juan is relaxing here, Eduardo went down a black yesterday, so happy with himself!
Juan is managing with his painkillers particularly at night but the embolization they did on rub tumours really did help.
thank you for asking.
thinking of you
maria
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- February 10, 2017 at 6:49 pm
Thanks all Celeste and Maria our thoughts exactly. Maria has Juan made it to the mountian and your son skiing? -
- February 10, 2017 at 6:49 pm
Thanks all Celeste and Maria our thoughts exactly. Maria has Juan made it to the mountian and your son skiing?
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- February 10, 2017 at 5:55 pm
Hi Rob,
So sorry to read your post about poor Adriana's pain. I know how hard it is for you, too.
I cannot offer any experience of Juan on WBR as he refused it. But I can tell you what the Drs said to us. When he was diagnosed with LMD and they saw the three brain mets at that point, we asked for SRS for those mets but the Drs did not agree to do it because of the LMD, they said that within weeks there would be others so not prepared to do it.
They offered the IT-IL2 and also WBR. But Juan chose to enjoy as long as he has without either of these treatments.
Saying all this, we have always looked at treatments for pain relief when we have needed to and if the WBR could relieve pain at some point then that could be a different decision.
I think Celeste's suggestions on what to ask the Drs are really good and weighing up potential side effects vs pain management effects is the key.
I really feel for you and Adriana. Saying lots of prayers and hoping the radiation quickly helps the pain.
You are an amazing support for your dear love
Maria
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- February 10, 2017 at 5:55 pm
Hi Rob,
So sorry to read your post about poor Adriana's pain. I know how hard it is for you, too.
I cannot offer any experience of Juan on WBR as he refused it. But I can tell you what the Drs said to us. When he was diagnosed with LMD and they saw the three brain mets at that point, we asked for SRS for those mets but the Drs did not agree to do it because of the LMD, they said that within weeks there would be others so not prepared to do it.
They offered the IT-IL2 and also WBR. But Juan chose to enjoy as long as he has without either of these treatments.
Saying all this, we have always looked at treatments for pain relief when we have needed to and if the WBR could relieve pain at some point then that could be a different decision.
I think Celeste's suggestions on what to ask the Drs are really good and weighing up potential side effects vs pain management effects is the key.
I really feel for you and Adriana. Saying lots of prayers and hoping the radiation quickly helps the pain.
You are an amazing support for your dear love
Maria
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- February 11, 2017 at 5:29 pm
Well the decision was essentially made for her. Still only 3 brain mets but have grown substantially. One threatining Csf passage. More impotantanly one in an area that controls heart and breathing function. If any larger by growth or swelling considered to be life threatining. First time for that term, YIKES. As explained GK is more likely to cause swelling due to intense focused shot whereas WBRT smaller doses spread out over time. Starting 14 sessions of WBRT today.
Best to all. Hi Paul. Will try to get by and say hi or leave a note. Adriana on 8th floor.
Rob -
- February 11, 2017 at 5:29 pm
Well the decision was essentially made for her. Still only 3 brain mets but have grown substantially. One threatining Csf passage. More impotantanly one in an area that controls heart and breathing function. If any larger by growth or swelling considered to be life threatining. First time for that term, YIKES. As explained GK is more likely to cause swelling due to intense focused shot whereas WBRT smaller doses spread out over time. Starting 14 sessions of WBRT today.
Best to all. Hi Paul. Will try to get by and say hi or leave a note. Adriana on 8th floor.
Rob -
- February 11, 2017 at 5:29 pm
Well the decision was essentially made for her. Still only 3 brain mets but have grown substantially. One threatining Csf passage. More impotantanly one in an area that controls heart and breathing function. If any larger by growth or swelling considered to be life threatining. First time for that term, YIKES. As explained GK is more likely to cause swelling due to intense focused shot whereas WBRT smaller doses spread out over time. Starting 14 sessions of WBRT today.
Best to all. Hi Paul. Will try to get by and say hi or leave a note. Adriana on 8th floor.
Rob-
- February 11, 2017 at 8:15 pm
Hi Rob,
So sorry the situation has forced the decision. Lots of goodwill flowing your and Adriana's way. Fingers crossed for Adriana, Paul and all the others battling Melanoma. Crossing my fingers wbrt sorts the brain mets asap. You are awesome in your research and support.
Best of wishes
Deb
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- February 11, 2017 at 8:15 pm
Hi Rob,
So sorry the situation has forced the decision. Lots of goodwill flowing your and Adriana's way. Fingers crossed for Adriana, Paul and all the others battling Melanoma. Crossing my fingers wbrt sorts the brain mets asap. You are awesome in your research and support.
Best of wishes
Deb
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- February 11, 2017 at 8:15 pm
Hi Rob,
So sorry the situation has forced the decision. Lots of goodwill flowing your and Adriana's way. Fingers crossed for Adriana, Paul and all the others battling Melanoma. Crossing my fingers wbrt sorts the brain mets asap. You are awesome in your research and support.
Best of wishes
Deb
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- February 11, 2017 at 8:43 pm
Goodness, Rob! Well, that answers that! And..what your doc had to say sounds reasonable. I am keeping fingers crossed that the WBRT will help with Adriana's pain very soon. Hang tough. I've always said that the things I've dealt with in my melanoma treatments were much harder on my husband than on me. Take care of yourself and give Adriana a hug from all of us! love, c
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- February 11, 2017 at 8:43 pm
Goodness, Rob! Well, that answers that! And..what your doc had to say sounds reasonable. I am keeping fingers crossed that the WBRT will help with Adriana's pain very soon. Hang tough. I've always said that the things I've dealt with in my melanoma treatments were much harder on my husband than on me. Take care of yourself and give Adriana a hug from all of us! love, c
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- February 11, 2017 at 8:43 pm
Goodness, Rob! Well, that answers that! And..what your doc had to say sounds reasonable. I am keeping fingers crossed that the WBRT will help with Adriana's pain very soon. Hang tough. I've always said that the things I've dealt with in my melanoma treatments were much harder on my husband than on me. Take care of yourself and give Adriana a hug from all of us! love, c
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