› Forums › General Melanoma Community › Concerns with treatment timeframes…
- This topic has 12 replies, 2 voices, and was last updated 10 years, 9 months ago by
arthurjedi007.
- Post
-
- May 19, 2015 at 7:14 am
Hi,
My Father-in-law was diagnosed with advanced melanoma in late 2014. I'm sorry, I don't have specific details about much of his diagnosis, prognosis and treatment as the information is filtered down to me from my wife (which comes from my mother-in-law). It has been difficult for me to obtain specific clinical information.
My Father in law had a primary, malignant tumour removed from his thigh in late 2014, and lympth nodes were also removed. A PET scan revealed multiple MET's (liver, spine, lungs), and he commenced immunotherapy (I wasn't given additional details). I believe this fits the criteria for a stage 4 diagnosis?
A recent MRI scan (last week) highlighted that the MET's were not responding to the treatment and it was ceased. The MET on his spine had reportedly increased in size and coincided with an increase in intense hip pain symptoms. I was informed that they were going to commence chemotherapy.
They just received the results of a second brain MRI today, which confirmed the presence of a brain MET (I was given no additional information regarding its size or if there was just one or multiple tumours. I was told that all other treatment (chemo) is to be cancelled and he will have 5-6 shots of radiotherapy to treat the brain tumour. I was also informed that apparently the radiotherapy will not commence for approximately 5-6 weeks and that according to the doctor, the waiting time is not an issue.
I am just wondering if it is normal to delay the commencement of a specific treatment for a brain MET for 5-6 weeks? My instincts (and my concerns re: the poor prognosis associated with melanoma brain MET's) are screeming "this is wrong!! He should be commencing the treatment right now".
I don't know if I am ignorant or just overly critical of his Oncologist and other treatment providers but it seems like there has been a delay in the commencement of each stage of treatment, or imaging investigation (in the order of weeks), and they (in my opinion), seem quite relaxed about the whole affair.
Should I be concerned about these delays (especially the brain MET treatment delay of 5-6 weeks)?
Thanks in advance for any guidance and advice.
- Replies
-
-
- May 19, 2015 at 4:05 pm
How is he feeling? It could be they are delaying treatment so he won't have to go through it and enjoy the time he has.
Otherwise yes the brain mets need treated with probably gamma knife if possible otherwise whole brain radiation as soon as possible like immediately. Preferably having that being done while he is on a immunotherapy like pd1. Also for the tumor in his spine should have either xgeva or zommeta to strengthen the bones. But I'm no doctor that's just from experience and what I've read should be done if a somewhat aggressive treatment is desired. I've had the head radiation similar to gamma knife while on pd1 and xgeva.
Artie
-
- May 19, 2015 at 9:25 pm
Thank you very much for your reply, Arty!
From what I see, he has lost some weight and is definitely more lethargic. He has lost alot of basic endurance (things like inability to stand for long periods of time, etc). I guess it is how I would expect him to be, but he certainly doesn't look like he is near the end.
I guess I anticipated your answer re: "they could be delaying the treatment so that he can enjoy the time that he has"… but I just want him to fight. I researched pd1 and passed the information on but they didn't even read it or discuss the option with the Oncologist. I makes me sad but I understand that we've got to support him and his decisions, even if we don't agree with them.
I assume that options were provided and a choice was made.. just to enjoy the time he has left.
It's all very hard for my wife and our family.
-
- May 20, 2015 at 1:43 am
Hi all,
I just wanted to provide an update regarding my relative's current affect (after atteding a review where confirmation was provided that Melanoma Brian MET is present in situ).
It appears that my Mother-in-law is being quite hopeful and positive about the additional diagnosis and delay in commencement of the radiotherapy to treat the brain MET. Please don't get me wrong, I think that it is highly appropriate and beneficial for hope and positivity to remain however; given the general prognosis assciated with melanoma – brain metasteses, I thought that there would be some sense of urgency to make best use of the time available (while my father-in-law still has a significant quality of life). It I was her, in addition to planning a trip and family time, I would also be madly researching all available treatment options to assist with any increase in overall survival rate, the chance to achieve NED status, and preserve his quality of life for the longest possible period of time. Mind you, I have already completed research and passed the information on (which was not read, or discussed with the Oncologist).
I don't know if this is me being overly paranoid, or perhaps cynical but could it be possible that the Oncologist has not completed an appropriate prognosis-related communication with her patient regarding the narrow time-frames and end of life aspects associated with this diagnosis? Obviously, it is not my place to have these discussions with my parents-in-law. I have attempted (very gently) to talk to my wife about it and raise my concerns re: treatment delays, but she does not wish to disucss those issues (too painful).
I am concerned because I don't want anyone to have any regrets regarding activities, conversations and / or plans that could have been organised at this point when he still has high function and good quality of life..
Has anyone else ever had a similar experience? Am I just thinking too much? If I am, please tell me to let it go..
Thanks ina dvance for any advice and/or reassurance.
-
- May 20, 2015 at 2:56 am
You are right in my opinion. It sounds like if treatments were being done right and timely he could have a chance to get to remission. I've been fighting to get there for 23 months and not there yet. I started with 7 tumors and now have at least 30. Been stage 4 since day 1. He has to want to fight, have hope he can beat this and get to a much better doc fast. Not easy to do even if he's willing.
Artie
-
- May 20, 2015 at 2:56 am
You are right in my opinion. It sounds like if treatments were being done right and timely he could have a chance to get to remission. I've been fighting to get there for 23 months and not there yet. I started with 7 tumors and now have at least 30. Been stage 4 since day 1. He has to want to fight, have hope he can beat this and get to a much better doc fast. Not easy to do even if he's willing.
Artie
-
- May 20, 2015 at 2:56 am
You are right in my opinion. It sounds like if treatments were being done right and timely he could have a chance to get to remission. I've been fighting to get there for 23 months and not there yet. I started with 7 tumors and now have at least 30. Been stage 4 since day 1. He has to want to fight, have hope he can beat this and get to a much better doc fast. Not easy to do even if he's willing.
Artie
-
- May 20, 2015 at 1:43 am
Hi all,
I just wanted to provide an update regarding my relative's current affect (after atteding a review where confirmation was provided that Melanoma Brian MET is present in situ).
It appears that my Mother-in-law is being quite hopeful and positive about the additional diagnosis and delay in commencement of the radiotherapy to treat the brain MET. Please don't get me wrong, I think that it is highly appropriate and beneficial for hope and positivity to remain however; given the general prognosis assciated with melanoma – brain metasteses, I thought that there would be some sense of urgency to make best use of the time available (while my father-in-law still has a significant quality of life). It I was her, in addition to planning a trip and family time, I would also be madly researching all available treatment options to assist with any increase in overall survival rate, the chance to achieve NED status, and preserve his quality of life for the longest possible period of time. Mind you, I have already completed research and passed the information on (which was not read, or discussed with the Oncologist).
I don't know if this is me being overly paranoid, or perhaps cynical but could it be possible that the Oncologist has not completed an appropriate prognosis-related communication with her patient regarding the narrow time-frames and end of life aspects associated with this diagnosis? Obviously, it is not my place to have these discussions with my parents-in-law. I have attempted (very gently) to talk to my wife about it and raise my concerns re: treatment delays, but she does not wish to disucss those issues (too painful).
I am concerned because I don't want anyone to have any regrets regarding activities, conversations and / or plans that could have been organised at this point when he still has high function and good quality of life..
Has anyone else ever had a similar experience? Am I just thinking too much? If I am, please tell me to let it go..
Thanks ina dvance for any advice and/or reassurance.
-
- May 20, 2015 at 1:43 am
Hi all,
I just wanted to provide an update regarding my relative's current affect (after atteding a review where confirmation was provided that Melanoma Brian MET is present in situ).
It appears that my Mother-in-law is being quite hopeful and positive about the additional diagnosis and delay in commencement of the radiotherapy to treat the brain MET. Please don't get me wrong, I think that it is highly appropriate and beneficial for hope and positivity to remain however; given the general prognosis assciated with melanoma – brain metasteses, I thought that there would be some sense of urgency to make best use of the time available (while my father-in-law still has a significant quality of life). It I was her, in addition to planning a trip and family time, I would also be madly researching all available treatment options to assist with any increase in overall survival rate, the chance to achieve NED status, and preserve his quality of life for the longest possible period of time. Mind you, I have already completed research and passed the information on (which was not read, or discussed with the Oncologist).
I don't know if this is me being overly paranoid, or perhaps cynical but could it be possible that the Oncologist has not completed an appropriate prognosis-related communication with her patient regarding the narrow time-frames and end of life aspects associated with this diagnosis? Obviously, it is not my place to have these discussions with my parents-in-law. I have attempted (very gently) to talk to my wife about it and raise my concerns re: treatment delays, but she does not wish to disucss those issues (too painful).
I am concerned because I don't want anyone to have any regrets regarding activities, conversations and / or plans that could have been organised at this point when he still has high function and good quality of life..
Has anyone else ever had a similar experience? Am I just thinking too much? If I am, please tell me to let it go..
Thanks ina dvance for any advice and/or reassurance.
-
- May 19, 2015 at 9:25 pm
Thank you very much for your reply, Arty!
From what I see, he has lost some weight and is definitely more lethargic. He has lost alot of basic endurance (things like inability to stand for long periods of time, etc). I guess it is how I would expect him to be, but he certainly doesn't look like he is near the end.
I guess I anticipated your answer re: "they could be delaying the treatment so that he can enjoy the time that he has"… but I just want him to fight. I researched pd1 and passed the information on but they didn't even read it or discuss the option with the Oncologist. I makes me sad but I understand that we've got to support him and his decisions, even if we don't agree with them.
I assume that options were provided and a choice was made.. just to enjoy the time he has left.
It's all very hard for my wife and our family.
-
- May 19, 2015 at 9:25 pm
Thank you very much for your reply, Arty!
From what I see, he has lost some weight and is definitely more lethargic. He has lost alot of basic endurance (things like inability to stand for long periods of time, etc). I guess it is how I would expect him to be, but he certainly doesn't look like he is near the end.
I guess I anticipated your answer re: "they could be delaying the treatment so that he can enjoy the time that he has"… but I just want him to fight. I researched pd1 and passed the information on but they didn't even read it or discuss the option with the Oncologist. I makes me sad but I understand that we've got to support him and his decisions, even if we don't agree with them.
I assume that options were provided and a choice was made.. just to enjoy the time he has left.
It's all very hard for my wife and our family.
-
- May 19, 2015 at 4:05 pm
How is he feeling? It could be they are delaying treatment so he won't have to go through it and enjoy the time he has.
Otherwise yes the brain mets need treated with probably gamma knife if possible otherwise whole brain radiation as soon as possible like immediately. Preferably having that being done while he is on a immunotherapy like pd1. Also for the tumor in his spine should have either xgeva or zommeta to strengthen the bones. But I'm no doctor that's just from experience and what I've read should be done if a somewhat aggressive treatment is desired. I've had the head radiation similar to gamma knife while on pd1 and xgeva.
Artie
-
- May 19, 2015 at 4:05 pm
How is he feeling? It could be they are delaying treatment so he won't have to go through it and enjoy the time he has.
Otherwise yes the brain mets need treated with probably gamma knife if possible otherwise whole brain radiation as soon as possible like immediately. Preferably having that being done while he is on a immunotherapy like pd1. Also for the tumor in his spine should have either xgeva or zommeta to strengthen the bones. But I'm no doctor that's just from experience and what I've read should be done if a somewhat aggressive treatment is desired. I've had the head radiation similar to gamma knife while on pd1 and xgeva.
Artie
-
- You must be logged in to reply to this topic.