Scary Symptoms–help!

Not to panic you, but these symptoms do sound to me (my hubby recently acquired brain mets and had some complications) like possible brain involvement. (I am NOT a doctor; but I am speaking from my experience with my husband…)

When my husband started his Whole Brain Radiation a week ago, some of the symptoms we were told to watch for (that could signify an increase in pressure/edema) was nausea, dizziness, headaches. When he was admitted to the hospital, they have been watching for signs of, oh, I forget the term for it, but any favoritism of one side of his body's movements over the other, like your husband is experiencing. 

In the few days before I admitted my husband, he slept for long periods of time, felt funny, had loss of coordination/balance, short term memory issues; then confusion, slurred speech/mumbling, dizziness, headache. It turned out his tumors were bleeding, causing edema. After being treated with steroids to shrink the swelling, he still has not regained his short term memory and still experiences lots of confusion. The doctors are thinking he may never regain those functions.

Your husband's symptons have not progressed to where my husband's were before he was admitted, but they are troubling, and you certainly don't want to wait until they do progress in that direction.

What blows my mind that your melanoma specialist's office is not concerned about these symptoms?!? 

I cannot tell you what you should do, but I can tell you what I would do were I in your place:

I would

A) call the doctor's office, knock some heads around and INSIST on speaking to the doctor (not someone in the office, not the nurse, the DOCTOR) ASAP. Maybe they figure your husband is coming in tomorrow anyway to get tests done, so no big deal. Guess what? It's a big deal to YOU. And then,

B) if that doctor does not tell you to bring him in today (or better yet bring him to the ER) and cannot give you solid reasons why, I would

C) take him to the emergency room myself (because they can do emergency MRIs, CTs, etc., and get your answers faster) and

D) FIRE that doctor and find another one. Any doctor who does not take signs of possible brain edema seriously should not be involved in your loved one's case. 

Hopefully, it will turn out as you say and perhaps it is the tumor causing some loss of bloodflow to part of your husband's brain. But even if it's just restricted blood flow due to the tumor and not true brain involvement, if it continues, his sided weakness could become permanent if it's not dealt with soon. 

Hope this helps. Please let us know how you make out!

Michelle, wife of Don

Not to panic you, but these symptoms do sound to me (my hubby recently acquired brain mets and had some complications) like possible brain involvement. (I am NOT a doctor; but I am speaking from my experience with my husband…)

When my husband started his Whole Brain Radiation a week ago, some of the symptoms we were told to watch for (that could signify an increase in pressure/edema) was nausea, dizziness, headaches. When he was admitted to the hospital, they have been watching for signs of, oh, I forget the term for it, but any favoritism of one side of his body's movements over the other, like your husband is experiencing. 

In the few days before I admitted my husband, he slept for long periods of time, felt funny, had loss of coordination/balance, short term memory issues; then confusion, slurred speech/mumbling, dizziness, headache. It turned out his tumors were bleeding, causing edema. After being treated with steroids to shrink the swelling, he still has not regained his short term memory and still experiences lots of confusion. The doctors are thinking he may never regain those functions.

Your husband's symptons have not progressed to where my husband's were before he was admitted, but they are troubling, and you certainly don't want to wait until they do progress in that direction.

What blows my mind that your melanoma specialist's office is not concerned about these symptoms?!? 

I cannot tell you what you should do, but I can tell you what I would do were I in your place:

I would

A) call the doctor's office, knock some heads around and INSIST on speaking to the doctor (not someone in the office, not the nurse, the DOCTOR) ASAP. Maybe they figure your husband is coming in tomorrow anyway to get tests done, so no big deal. Guess what? It's a big deal to YOU. And then,

B) if that doctor does not tell you to bring him in today (or better yet bring him to the ER) and cannot give you solid reasons why, I would

C) take him to the emergency room myself (because they can do emergency MRIs, CTs, etc., and get your answers faster) and

D) FIRE that doctor and find another one. Any doctor who does not take signs of possible brain edema seriously should not be involved in your loved one's case. 

Hopefully, it will turn out as you say and perhaps it is the tumor causing some loss of bloodflow to part of your husband's brain. But even if it's just restricted blood flow due to the tumor and not true brain involvement, if it continues, his sided weakness could become permanent if it's not dealt with soon. 

Hope this helps. Please let us know how you make out!

Michelle, wife of Don

Not to panic you, but these symptoms do sound to me (my hubby recently acquired brain mets and had some complications) like possible brain involvement. (I am NOT a doctor; but I am speaking from my experience with my husband…)

When my husband started his Whole Brain Radiation a week ago, some of the symptoms we were told to watch for (that could signify an increase in pressure/edema) was nausea, dizziness, headaches. When he was admitted to the hospital, they have been watching for signs of, oh, I forget the term for it, but any favoritism of one side of his body's movements over the other, like your husband is experiencing. 

In the few days before I admitted my husband, he slept for long periods of time, felt funny, had loss of coordination/balance, short term memory issues; then confusion, slurred speech/mumbling, dizziness, headache. It turned out his tumors were bleeding, causing edema. After being treated with steroids to shrink the swelling, he still has not regained his short term memory and still experiences lots of confusion. The doctors are thinking he may never regain those functions.

Your husband's symptons have not progressed to where my husband's were before he was admitted, but they are troubling, and you certainly don't want to wait until they do progress in that direction.

What blows my mind that your melanoma specialist's office is not concerned about these symptoms?!? 

I cannot tell you what you should do, but I can tell you what I would do were I in your place:

I would

A) call the doctor's office, knock some heads around and INSIST on speaking to the doctor (not someone in the office, not the nurse, the DOCTOR) ASAP. Maybe they figure your husband is coming in tomorrow anyway to get tests done, so no big deal. Guess what? It's a big deal to YOU. And then,

B) if that doctor does not tell you to bring him in today (or better yet bring him to the ER) and cannot give you solid reasons why, I would

C) take him to the emergency room myself (because they can do emergency MRIs, CTs, etc., and get your answers faster) and

D) FIRE that doctor and find another one. Any doctor who does not take signs of possible brain edema seriously should not be involved in your loved one's case. 

Hopefully, it will turn out as you say and perhaps it is the tumor causing some loss of bloodflow to part of your husband's brain. But even if it's just restricted blood flow due to the tumor and not true brain involvement, if it continues, his sided weakness could become permanent if it's not dealt with soon. 

Hope this helps. Please let us know how you make out!

Michelle, wife of Don

I am concerned that your husband's symptoms are getting worse. Weakness on one side could be caused by a number of things, including a stroke. Light headedness might be a sign of low bloodpressure. Sleeping 20+ hours a day is certainly not good, and therefore I feel that it is time to have your husband examined by a competent doctor. I certainly think that this should be done very soon.

Take care

Frank from Australia

I am concerned that your husband's symptoms are getting worse. Weakness on one side could be caused by a number of things, including a stroke. Light headedness might be a sign of low bloodpressure. Sleeping 20+ hours a day is certainly not good, and therefore I feel that it is time to have your husband examined by a competent doctor. I certainly think that this should be done very soon.

Take care

Frank from Australia

I am concerned that your husband's symptoms are getting worse. Weakness on one side could be caused by a number of things, including a stroke. Light headedness might be a sign of low bloodpressure. Sleeping 20+ hours a day is certainly not good, and therefore I feel that it is time to have your husband examined by a competent doctor. I certainly think that this should be done very soon.

Take care

Frank from Australia

Your husband could be having thyroid issues since the yervoy…. but.  My concern is also the lack of medical emergency care. 

As you might know that I called, the mri was at 6:30am and by afternoon the team had already met and was giving me options and decisions.   Not waiting for an appointment. The nuero Dr was in DC in a conference and he was pulled into a video conference.   You need to demand some conversation.     Some patients can be inconveniences because sometimes people have to wait, not the person that your husband is having problems.  As we sat that Tuesday afternoon there was a very impatient man that had asked many times while they were running late.  He was told along with us that their was an emergency, please be patient.   I found out that I was the emergency.  As it happened we left in the elevator as they were now taking us to the next radiologist and the man was all smiling and chatty.  How great it was a day and he wished us a good day also.  The man happened to then catch our eyes while he said goodbye.  I think he learned that day that he will never complains he has to sit while others need to be moved ahead of thier appointments.

So…..   make them test your thyroid functions and any side effect that can be thought of with the yervoy.  2nd is to be tested neurologically tested.   I hope tht there isn't any major issue. Recently one of the NY mpip's had horrible headaches and it was found to be thyroids (his name isn't sticking but last I heard he was off on a vacation).  Push the Dr. and make sure that if this one isn't the Dr and office that cares then find another one.

Let us know,

Linda

Your husband could be having thyroid issues since the yervoy…. but.  My concern is also the lack of medical emergency care. 

As you might know that I called, the mri was at 6:30am and by afternoon the team had already met and was giving me options and decisions.   Not waiting for an appointment. The nuero Dr was in DC in a conference and he was pulled into a video conference.   You need to demand some conversation.     Some patients can be inconveniences because sometimes people have to wait, not the person that your husband is having problems.  As we sat that Tuesday afternoon there was a very impatient man that had asked many times while they were running late.  He was told along with us that their was an emergency, please be patient.   I found out that I was the emergency.  As it happened we left in the elevator as they were now taking us to the next radiologist and the man was all smiling and chatty.  How great it was a day and he wished us a good day also.  The man happened to then catch our eyes while he said goodbye.  I think he learned that day that he will never complains he has to sit while others need to be moved ahead of thier appointments.

So…..   make them test your thyroid functions and any side effect that can be thought of with the yervoy.  2nd is to be tested neurologically tested.   I hope tht there isn't any major issue. Recently one of the NY mpip's had horrible headaches and it was found to be thyroids (his name isn't sticking but last I heard he was off on a vacation).  Push the Dr. and make sure that if this one isn't the Dr and office that cares then find another one.

Let us know,

Linda

Your husband could be having thyroid issues since the yervoy…. but.  My concern is also the lack of medical emergency care. 

As you might know that I called, the mri was at 6:30am and by afternoon the team had already met and was giving me options and decisions.   Not waiting for an appointment. The nuero Dr was in DC in a conference and he was pulled into a video conference.   You need to demand some conversation.     Some patients can be inconveniences because sometimes people have to wait, not the person that your husband is having problems.  As we sat that Tuesday afternoon there was a very impatient man that had asked many times while they were running late.  He was told along with us that their was an emergency, please be patient.   I found out that I was the emergency.  As it happened we left in the elevator as they were now taking us to the next radiologist and the man was all smiling and chatty.  How great it was a day and he wished us a good day also.  The man happened to then catch our eyes while he said goodbye.  I think he learned that day that he will never complains he has to sit while others need to be moved ahead of thier appointments.

So…..   make them test your thyroid functions and any side effect that can be thought of with the yervoy.  2nd is to be tested neurologically tested.   I hope tht there isn't any major issue. Recently one of the NY mpip's had horrible headaches and it was found to be thyroids (his name isn't sticking but last I heard he was off on a vacation).  Push the Dr. and make sure that if this one isn't the Dr and office that cares then find another one.

Let us know,

Linda

I really know how scary this is for you and wish I could say not to worry but it is extremely hard to do that from one scan to the next.  Before my husband's last brain MRI, 2 week ago, (he is 39) he also felt clumsy, more tired, forgetful, and seemed to be getting headaches but his MRI was clear.  He finished ipi in August and as a late responder.  In his first set of scans he also developed a new tumour behind his eye and his tumour in lung and tumours in liver had continued to multiple and grow.  It was scans for starting another treatment 8 weeks later that we realized he was responding late.

I hope your scan is good news.

I really know how scary this is for you and wish I could say not to worry but it is extremely hard to do that from one scan to the next.  Before my husband's last brain MRI, 2 week ago, (he is 39) he also felt clumsy, more tired, forgetful, and seemed to be getting headaches but his MRI was clear.  He finished ipi in August and as a late responder.  In his first set of scans he also developed a new tumour behind his eye and his tumour in lung and tumours in liver had continued to multiple and grow.  It was scans for starting another treatment 8 weeks later that we realized he was responding late.

I hope your scan is good news.

I really know how scary this is for you and wish I could say not to worry but it is extremely hard to do that from one scan to the next.  Before my husband's last brain MRI, 2 week ago, (he is 39) he also felt clumsy, more tired, forgetful, and seemed to be getting headaches but his MRI was clear.  He finished ipi in August and as a late responder.  In his first set of scans he also developed a new tumour behind his eye and his tumour in lung and tumours in liver had continued to multiple and grow.  It was scans for starting another treatment 8 weeks later that we realized he was responding late.

I hope your scan is good news.

Good luck w/scans, PLEASE let us know.

karen

Good luck w/scans, PLEASE let us know.

karen

Good luck w/scans, PLEASE let us know.

karen

These (stroke-like) symtpoms sound a lot like the one smy dad had when we discovered the brain tumors. Of course I only have this experience and NOT a doctor, but I would call and call again to the Drs office. If you have seen a neurologist/ neuro onc/ neurosurgeon at all, or one is in that practice, insist to see him/ her! The steroid dechadron might be Rxed to reduce any possibly brain swelling in the meantime. I am not trying to panic you, just share from my experience as it sounds like others are as well.

If you are still giving pain meds, I would consider only using Tylenol. Our drs will not allow anythign to further thin blood in the event of bleeding from tumors. No aspirin, no ibuprofin. Again, consult the doctor ASAP.

Best,

DF

These (stroke-like) symtpoms sound a lot like the one smy dad had when we discovered the brain tumors. Of course I only have this experience and NOT a doctor, but I would call and call again to the Drs office. If you have seen a neurologist/ neuro onc/ neurosurgeon at all, or one is in that practice, insist to see him/ her! The steroid dechadron might be Rxed to reduce any possibly brain swelling in the meantime. I am not trying to panic you, just share from my experience as it sounds like others are as well.

If you are still giving pain meds, I would consider only using Tylenol. Our drs will not allow anythign to further thin blood in the event of bleeding from tumors. No aspirin, no ibuprofin. Again, consult the doctor ASAP.

Best,

DF

These (stroke-like) symtpoms sound a lot like the one smy dad had when we discovered the brain tumors. Of course I only have this experience and NOT a doctor, but I would call and call again to the Drs office. If you have seen a neurologist/ neuro onc/ neurosurgeon at all, or one is in that practice, insist to see him/ her! The steroid dechadron might be Rxed to reduce any possibly brain swelling in the meantime. I am not trying to panic you, just share from my experience as it sounds like others are as well.

If you are still giving pain meds, I would consider only using Tylenol. Our drs will not allow anythign to further thin blood in the event of bleeding from tumors. No aspirin, no ibuprofin. Again, consult the doctor ASAP.

Best,

DF

Huge hugs and huge prayers going out. 

Karin

Huge hugs and huge prayers going out. 

Karin

Huge hugs and huge prayers going out. 

Karin

Glad you finally got thru to them.  COME ON Zelboraf!  There is a good chnce that it will reduce the tumor load where they can be removed either surgically or radiologically.  Praying for y'all.

Glad you finally got thru to them.  COME ON Zelboraf!  There is a good chnce that it will reduce the tumor load where they can be removed either surgically or radiologically.  Praying for y'all.

Glad you finally got thru to them.  COME ON Zelboraf!  There is a good chnce that it will reduce the tumor load where they can be removed either surgically or radiologically.  Praying for y'all.