› Forums › General Melanoma Community › Increasing brain mets
- This topic has 21 replies, 5 voices, and was last updated 11 years, 10 months ago by
randallgford.
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- March 28, 2013 at 11:29 pm
Randall had a brain mri a week ago, showd 5 small brain mets. Radiation Oncologist recommends
cyberknife. Yesterday had mri/ct for mapping/sequencing for cyberknife and this mri shows
14 mets, and they are now recommending wbr. Randall completed two yervoy treatments and has
two left. each week when we go to onco appt my husband seems to appear well, his blood work
is good and dr is optimistic. When we are home, he looks pale, thin, and his belly is protruding more
Randall had a brain mri a week ago, showd 5 small brain mets. Radiation Oncologist recommends
cyberknife. Yesterday had mri/ct for mapping/sequencing for cyberknife and this mri shows
14 mets, and they are now recommending wbr. Randall completed two yervoy treatments and has
two left. each week when we go to onco appt my husband seems to appear well, his blood work
is good and dr is optimistic. When we are home, he looks pale, thin, and his belly is protruding more
and more. Dr. gave us water pills three days ago saying the liver sweats and creates fluid in the abdomen.
So why would I not think he liver mets are multiplying like the brain? Onc said to give the water pills one more
day and he will see him tomorrow . He has alot of tumors lung, abdomen, and started with only 2 on liver
but im scared they've increased. What if he strts wbr and it knocks him out because the rest of his tumors
are growing? I know Im babbling but Im scared. What other questions should I ask the onc tomorrow?
Zbraf is an option because he is braf positive, but doc wanted to wait til yervoy then assess because
he felt Randall wasnt deteriorating. I think he is. BUT I DONT KNOW MAYBE IM PARANOID.
- Replies
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- March 29, 2013 at 3:52 am
Not sure how much I can help you, but wanted to say I am very sorry you are going thru this. It Is OK to freak out, you aren’t any more paranoid than the rest if us! Ask about side effects of WBR. Ask if he will still get to finish Yervoy, or how long of an interruption will there be? Will he be on heavy steroids after WBR? Depending on how long the steroids last or how high the dose, it could interfere.Oppositely, there are trials where people are doing Ipi then WBR then Ipi, they think it could stimulate the Ipi into a stronger immune response. Ask if he can find preliminary info on these trials. I had rapid progression during Ipi doses, SRS, Zel, finished Ipi, sort of a mess we dealt with one thing at a time – all in my profile. Still here, still enjoying my family, and awaiting next scans.
I think it is OK to push for more scans ASAP if you think his other tumors are life threatening, they found my 2 brain mets, and i said exactly to my Onc I wonder what the cardiac tumor is doing? I just wouldn’t drop it that something else was wrong. Ipi can make things worse before they get better.
Keep fighting, don’t give up. I will say a prayer for you both and your doctors tonight.
Amy
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- March 29, 2013 at 3:52 am
Not sure how much I can help you, but wanted to say I am very sorry you are going thru this. It Is OK to freak out, you aren’t any more paranoid than the rest if us! Ask about side effects of WBR. Ask if he will still get to finish Yervoy, or how long of an interruption will there be? Will he be on heavy steroids after WBR? Depending on how long the steroids last or how high the dose, it could interfere.Oppositely, there are trials where people are doing Ipi then WBR then Ipi, they think it could stimulate the Ipi into a stronger immune response. Ask if he can find preliminary info on these trials. I had rapid progression during Ipi doses, SRS, Zel, finished Ipi, sort of a mess we dealt with one thing at a time – all in my profile. Still here, still enjoying my family, and awaiting next scans.
I think it is OK to push for more scans ASAP if you think his other tumors are life threatening, they found my 2 brain mets, and i said exactly to my Onc I wonder what the cardiac tumor is doing? I just wouldn’t drop it that something else was wrong. Ipi can make things worse before they get better.
Keep fighting, don’t give up. I will say a prayer for you both and your doctors tonight.
Amy
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- March 29, 2013 at 3:52 am
Not sure how much I can help you, but wanted to say I am very sorry you are going thru this. It Is OK to freak out, you aren’t any more paranoid than the rest if us! Ask about side effects of WBR. Ask if he will still get to finish Yervoy, or how long of an interruption will there be? Will he be on heavy steroids after WBR? Depending on how long the steroids last or how high the dose, it could interfere.Oppositely, there are trials where people are doing Ipi then WBR then Ipi, they think it could stimulate the Ipi into a stronger immune response. Ask if he can find preliminary info on these trials. I had rapid progression during Ipi doses, SRS, Zel, finished Ipi, sort of a mess we dealt with one thing at a time – all in my profile. Still here, still enjoying my family, and awaiting next scans.
I think it is OK to push for more scans ASAP if you think his other tumors are life threatening, they found my 2 brain mets, and i said exactly to my Onc I wonder what the cardiac tumor is doing? I just wouldn’t drop it that something else was wrong. Ipi can make things worse before they get better.
Keep fighting, don’t give up. I will say a prayer for you both and your doctors tonight.
Amy
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- March 29, 2013 at 3:54 am
My knowlege is not as vast as so many amazing people on this site. Why don't you ask your Dr to intoduce your husband to Zbraf while on Yervoy. I've seen many people doing combination theraphies. Yervoy is a delayed response. Being that he is braf + that gives you many options. Maybe also giving him tremador for the brain mets. Reach out to Janner on the site she has so much knowlege to share. Thinking of you always.
Wendy
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- March 29, 2013 at 3:54 am
My knowlege is not as vast as so many amazing people on this site. Why don't you ask your Dr to intoduce your husband to Zbraf while on Yervoy. I've seen many people doing combination theraphies. Yervoy is a delayed response. Being that he is braf + that gives you many options. Maybe also giving him tremador for the brain mets. Reach out to Janner on the site she has so much knowlege to share. Thinking of you always.
Wendy
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- March 29, 2013 at 3:54 am
My knowlege is not as vast as so many amazing people on this site. Why don't you ask your Dr to intoduce your husband to Zbraf while on Yervoy. I've seen many people doing combination theraphies. Yervoy is a delayed response. Being that he is braf + that gives you many options. Maybe also giving him tremador for the brain mets. Reach out to Janner on the site she has so much knowlege to share. Thinking of you always.
Wendy
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- March 29, 2013 at 5:39 am
I'm not qualified to offer medical advice, and I don't want to, but I think I'm with your general take on this. If my # of brain mets rose from 5 to 14, I would not be very relaxed, in fact quite the opposite. With Gamma Knife they may still be able to treat that many brain mets, depending on overall volume, but maybe Cyber Knife doesn't go that high — I don't know. I would be concerned about the abdomen too if it were me. Don't know what to say… I'd say assert yourself with the doctor tomorrow, whether it's on Z vs. IPI vs. both, on looking at the abdomen, and so forth. Which is what you're thinking you need to do, from the sound of it. I hope you and the doctor(s) are able to come up with a mutually agreeable treatment plan. Wishing you the best. – Kyle
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- March 29, 2013 at 5:39 am
I'm not qualified to offer medical advice, and I don't want to, but I think I'm with your general take on this. If my # of brain mets rose from 5 to 14, I would not be very relaxed, in fact quite the opposite. With Gamma Knife they may still be able to treat that many brain mets, depending on overall volume, but maybe Cyber Knife doesn't go that high — I don't know. I would be concerned about the abdomen too if it were me. Don't know what to say… I'd say assert yourself with the doctor tomorrow, whether it's on Z vs. IPI vs. both, on looking at the abdomen, and so forth. Which is what you're thinking you need to do, from the sound of it. I hope you and the doctor(s) are able to come up with a mutually agreeable treatment plan. Wishing you the best. – Kyle
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- March 29, 2013 at 5:39 am
I'm not qualified to offer medical advice, and I don't want to, but I think I'm with your general take on this. If my # of brain mets rose from 5 to 14, I would not be very relaxed, in fact quite the opposite. With Gamma Knife they may still be able to treat that many brain mets, depending on overall volume, but maybe Cyber Knife doesn't go that high — I don't know. I would be concerned about the abdomen too if it were me. Don't know what to say… I'd say assert yourself with the doctor tomorrow, whether it's on Z vs. IPI vs. both, on looking at the abdomen, and so forth. Which is what you're thinking you need to do, from the sound of it. I hope you and the doctor(s) are able to come up with a mutually agreeable treatment plan. Wishing you the best. – Kyle
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- March 29, 2013 at 6:05 pm
Hi there,
No wisdom or advice to offer you, just want to say that you are by no means paranoid and that my thoughts are with you.
Karen-
- March 29, 2013 at 10:57 pm
Thanks all of you for responding, it means alot. I talked to the Dr today and he convinced me
about the WBR – that dealing with untreated brain mets is what to weigh the treatment
against and not just worry about the side effects. He feels that smokers and diabetics often
have worst side effects from WBR and Randall is relatively young and healthy. As for the
abdomen, he said we could do ultrasound guided parioscentesis if the protrusion becomes too
uncomfortable, gets in the way of him eating. We have six weeks more – 2 yervoy treatments
which he doesnt plan to delay, then will rescan and Zelboraf will be Plan B. Randall took
a 3 week medical leave, Im a CPA and can work some from home and stepmom in law offered
to help out so I can pop into work some and gets things processed and out the door. Feel a bit
better, decisions made, hope for he best, dont look back. But my stomach is churning my beautiful
20 yrd old (junior in college) daughter will be walking in the door from Orlando to this devastating news.
God help me, to break to her heart is more than my heart can bear.
Vicki
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- March 29, 2013 at 10:57 pm
Thanks all of you for responding, it means alot. I talked to the Dr today and he convinced me
about the WBR – that dealing with untreated brain mets is what to weigh the treatment
against and not just worry about the side effects. He feels that smokers and diabetics often
have worst side effects from WBR and Randall is relatively young and healthy. As for the
abdomen, he said we could do ultrasound guided parioscentesis if the protrusion becomes too
uncomfortable, gets in the way of him eating. We have six weeks more – 2 yervoy treatments
which he doesnt plan to delay, then will rescan and Zelboraf will be Plan B. Randall took
a 3 week medical leave, Im a CPA and can work some from home and stepmom in law offered
to help out so I can pop into work some and gets things processed and out the door. Feel a bit
better, decisions made, hope for he best, dont look back. But my stomach is churning my beautiful
20 yrd old (junior in college) daughter will be walking in the door from Orlando to this devastating news.
God help me, to break to her heart is more than my heart can bear.
Vicki
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- March 30, 2013 at 4:51 am
Just get thru things one day at a time. Sounds like you have a pln, which is always comforting. I hoped your daughter also brings brings you a shoulder to cry and rest on for the next round of battle. I hope she will surprise you with her strength. My children always do.~prayers
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- March 30, 2013 at 4:51 am
Just get thru things one day at a time. Sounds like you have a pln, which is always comforting. I hoped your daughter also brings brings you a shoulder to cry and rest on for the next round of battle. I hope she will surprise you with her strength. My children always do.~prayers
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- March 30, 2013 at 9:11 pm
Thanks, and you are so right. After her tears and some serious discussion, she was talking about her
school projects, plans, laughing and teasing with her dad. I feel such a weight lifted from my shoulders and
yes she surely offered her shoulder to me with love.
We started measuring Randalls waist and it dropped an inch from yesterday so the waterpills are working
their magic and Im not as concerned about the abdomen. Its softer and he feels some relief.
-
- March 30, 2013 at 9:11 pm
Thanks, and you are so right. After her tears and some serious discussion, she was talking about her
school projects, plans, laughing and teasing with her dad. I feel such a weight lifted from my shoulders and
yes she surely offered her shoulder to me with love.
We started measuring Randalls waist and it dropped an inch from yesterday so the waterpills are working
their magic and Im not as concerned about the abdomen. Its softer and he feels some relief.
-
- March 30, 2013 at 9:11 pm
Thanks, and you are so right. After her tears and some serious discussion, she was talking about her
school projects, plans, laughing and teasing with her dad. I feel such a weight lifted from my shoulders and
yes she surely offered her shoulder to me with love.
We started measuring Randalls waist and it dropped an inch from yesterday so the waterpills are working
their magic and Im not as concerned about the abdomen. Its softer and he feels some relief.
-
- March 30, 2013 at 4:51 am
Just get thru things one day at a time. Sounds like you have a pln, which is always comforting. I hoped your daughter also brings brings you a shoulder to cry and rest on for the next round of battle. I hope she will surprise you with her strength. My children always do.~prayers
-
- March 29, 2013 at 10:57 pm
Thanks all of you for responding, it means alot. I talked to the Dr today and he convinced me
about the WBR – that dealing with untreated brain mets is what to weigh the treatment
against and not just worry about the side effects. He feels that smokers and diabetics often
have worst side effects from WBR and Randall is relatively young and healthy. As for the
abdomen, he said we could do ultrasound guided parioscentesis if the protrusion becomes too
uncomfortable, gets in the way of him eating. We have six weeks more – 2 yervoy treatments
which he doesnt plan to delay, then will rescan and Zelboraf will be Plan B. Randall took
a 3 week medical leave, Im a CPA and can work some from home and stepmom in law offered
to help out so I can pop into work some and gets things processed and out the door. Feel a bit
better, decisions made, hope for he best, dont look back. But my stomach is churning my beautiful
20 yrd old (junior in college) daughter will be walking in the door from Orlando to this devastating news.
God help me, to break to her heart is more than my heart can bear.
Vicki
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