Dear Marietjie,
I am so sorry about the very frightening and concerning bleeding episode that Tok had this weekend, and don't understand why a cause of the bleeding has not yet been determined which is extremely frustrating especially since he was in the hospital where it seems that a diagnosis could/should have been made prior to him being released. I am however grateful that Tok has a CT scheduled and follow-up appointment to discuss the results with the oncologist tomorrow, and am sending my most positive thoughts for a benign and easily treated diagnosis as I anxiously await your next update.
Sharing your concern and scanxiety with deepest caring, healing wishes for Tok, much love, and continued Hope,
Bonni
Tok from South Africa - Dx around 2004
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Bonni Hess
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MarietjievdMerwe
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Re: Tok from South Africa - Dx around 2004
And...nothing.
Tok had the CT.
Spoke to him about an hour ago. According to the oncologist "it looks like the cancer is back". That's all. The liver as well as the kidneys are "clean". There are marks on his lungs, but that could be because of the removal of the mets two years ago?
He got morphine tablets and was sent home. She couldn't be bothered about the arm. He is still having the MRI on the 9th of July.
So we still don't have a clue on what's going on. I would have thought that they will be able to compare the last CT with today's CT, but that seems to be not the case. As far as I know, he did not take the last CT's cd with him.
To say that this is extremely frustrating would be an understatement.
Tok had the CT.
Spoke to him about an hour ago. According to the oncologist "it looks like the cancer is back". That's all. The liver as well as the kidneys are "clean". There are marks on his lungs, but that could be because of the removal of the mets two years ago?
He got morphine tablets and was sent home. She couldn't be bothered about the arm. He is still having the MRI on the 9th of July.
So we still don't have a clue on what's going on. I would have thought that they will be able to compare the last CT with today's CT, but that seems to be not the case. As far as I know, he did not take the last CT's cd with him.
To say that this is extremely frustrating would be an understatement.
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MarietjievdMerwe
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Re: Tok from South Africa - Dx around 2004
Spoke to our sister last night and Tok told her that the wound on his arm is in all probability ASPS as this is just above the scar where the primary was removed.
This is heartbreaking to me. I am devastated and heartbroken. And according to the oncologist he spoke to yesterday, he should have had radiation when the primary was removed. As i recall, somebody spoke to us about radiation before Tok was dismissed from hospital in February 2012. At that time there was no time to "waste" on radiation as he had to undergo major lung surgery to remove the mets. Saw the histoligy report the other day: the biggest met on the left lung had been 5cm...
Dr Cohen did not want to do radiation but immediately started Tok on chemo.
He is however going to insist for his arm to be amputated. This makes sense to me as this is where the problem lies and he has absolutely no use of the arm. This is also the scourse of his immense pain.
Our family will support him in this decission.
Could I please ask everybody on this forum to spare a thought for our parents. They are respectively 81 and 74 years old and this is taking its toll on them.
Kind regards.
Marietjie.
This is heartbreaking to me. I am devastated and heartbroken. And according to the oncologist he spoke to yesterday, he should have had radiation when the primary was removed. As i recall, somebody spoke to us about radiation before Tok was dismissed from hospital in February 2012. At that time there was no time to "waste" on radiation as he had to undergo major lung surgery to remove the mets. Saw the histoligy report the other day: the biggest met on the left lung had been 5cm...
Dr Cohen did not want to do radiation but immediately started Tok on chemo.
He is however going to insist for his arm to be amputated. This makes sense to me as this is where the problem lies and he has absolutely no use of the arm. This is also the scourse of his immense pain.
Our family will support him in this decission.
Could I please ask everybody on this forum to spare a thought for our parents. They are respectively 81 and 74 years old and this is taking its toll on them.
Kind regards.
Marietjie.
Re: Tok from South Africa - Dx around 2004
I am not sure that this is a local ASPS recurrence - postsurgical complications could be severe by themselves - chronically infected wound, lymphedema - but it is true that in some cases the amputation is the best chance for the patient for a relief from the pain.
Olga
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MarietjievdMerwe
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Re: Tok from South Africa - Dx around 2004
Olga,
I hope and pray that is not ASPS recurrence. As in his case, I also do believe that amputation would be the best for him. Mentally as well as physically.
I hope and pray that is not ASPS recurrence. As in his case, I also do believe that amputation would be the best for him. Mentally as well as physically.
Re: Tok from South Africa - Dx around 2004
Hi Marietjie and family
I am so sorry to hear of the weeks episodes and happenings
My prayers are with you ALL as the 9th draws near
My heart breaks as I hear of the toll that this is creating for your parents.
As parents , we are born to believe that our children will be youthful much longer than we will as parents.
The rude awakening happens when ASPS enters our lives and let's us know that isn't true
Our wish for you ,our friends ,is to find comfort in your families love which includes us all.
Hugs to you .
Love
Debbie
I am so sorry to hear of the weeks episodes and happenings
My prayers are with you ALL as the 9th draws near
My heart breaks as I hear of the toll that this is creating for your parents.
As parents , we are born to believe that our children will be youthful much longer than we will as parents.
The rude awakening happens when ASPS enters our lives and let's us know that isn't true
Our wish for you ,our friends ,is to find comfort in your families love which includes us all.
Hugs to you .
Love
Debbie
Last edited by D.ap on Wed Jul 02, 2014 11:44 am, edited 1 time in total.
Debbie
Re: Tok from South Africa - Dx around 2004
From Los Angeles i send you all love and hope and strength!
I am still angry an i also agree that this sounds like ASPS and I would follow the wishes of your brother ASAP...
I wouldn't blame not having radiation to the area it is NOT proven to help from what i understand..
Though i had 33 treatments i have personally seen no proof it works sadly...
My question though is ASPS is slow how did this other met be either missed or grow so fast?
But, right now action an not questions is needed an i agree but i am heartbroken he has to have this amputation
Maybe his parents should start to post here also hun? So many parents are here an they would receive so much love! an support!
*hugs and prayers*
I am still angry an i also agree that this sounds like ASPS and I would follow the wishes of your brother ASAP...
I wouldn't blame not having radiation to the area it is NOT proven to help from what i understand..
Though i had 33 treatments i have personally seen no proof it works sadly...
My question though is ASPS is slow how did this other met be either missed or grow so fast?
But, right now action an not questions is needed an i agree but i am heartbroken he has to have this amputation
Maybe his parents should start to post here also hun? So many parents are here an they would receive so much love! an support!
*hugs and prayers*
“Many times it is much more important to know what kind of patient has the disease, than what kind of disease the patient has”.
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
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Bonni Hess
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Re: Tok from South Africa - Dx around 2004
Dear Maritjie,
I continue to so deeply share your great frustration with the doctors and the medical "care..." that dear Tok is receiving as well as your concern about him physically and the emotional toll that the situation is taking on him as well as all of your family. I don't understand on what basis the oncologist made the statement that "it looks like the cancer is back" if she did not compare the most recent CT with previous ones. Hopefully you will be able to receive more definitive answers from the July 9th MRI, and Hopefully too Tok will delay his decision about amputation of his arm until there is more information available regarding the status of his ASPS and the cause for the wound and bleeding in his arm. I Hope that his wife or some family member or close friend will accompany him to the meeting with the oncologist to discuss the MRI results so that the appropriate answers can be asked and answered since it is very important to have an advocate present with the patient who can write down any significant information which might be missed or misunderstood by the patient. In the meantime, I Hope that Tok's wound bleeding and pain are under control and that there is no sign of infection, but if the bleeding and pain continue or there are signs of infection he needs to immediately seek medical treatment.
I am so sorry for the immense anguish and stress that your dear parents are going through. As all of us ASPS parents know far too well, it is one of Life's greatest heartaches to see your precious child suffer and to feel so very helpless, but please tell them that they are not alone on this difficult journey which no parent should ever have to make, and that those of us on this Board are here to provide strengthening support and encouragement for them. Take care dear Marietjie and feel the embrace of my special hugs and deepest caring.
With shared great frustration and concern, special caring thoughts, healing wishes for Tok, much love, and continued Hope,
Bonni
I continue to so deeply share your great frustration with the doctors and the medical "care..." that dear Tok is receiving as well as your concern about him physically and the emotional toll that the situation is taking on him as well as all of your family. I don't understand on what basis the oncologist made the statement that "it looks like the cancer is back" if she did not compare the most recent CT with previous ones. Hopefully you will be able to receive more definitive answers from the July 9th MRI, and Hopefully too Tok will delay his decision about amputation of his arm until there is more information available regarding the status of his ASPS and the cause for the wound and bleeding in his arm. I Hope that his wife or some family member or close friend will accompany him to the meeting with the oncologist to discuss the MRI results so that the appropriate answers can be asked and answered since it is very important to have an advocate present with the patient who can write down any significant information which might be missed or misunderstood by the patient. In the meantime, I Hope that Tok's wound bleeding and pain are under control and that there is no sign of infection, but if the bleeding and pain continue or there are signs of infection he needs to immediately seek medical treatment.
I am so sorry for the immense anguish and stress that your dear parents are going through. As all of us ASPS parents know far too well, it is one of Life's greatest heartaches to see your precious child suffer and to feel so very helpless, but please tell them that they are not alone on this difficult journey which no parent should ever have to make, and that those of us on this Board are here to provide strengthening support and encouragement for them. Take care dear Marietjie and feel the embrace of my special hugs and deepest caring.
With shared great frustration and concern, special caring thoughts, healing wishes for Tok, much love, and continued Hope,
Bonni
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MarietjievdMerwe
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Re: Tok from South Africa - Dx around 2004
Hi everybody,
So, the MRI didn't happen. He waited for a whole day, after travelling how many hours, just to get some extra morphine syrup (they were out of tablets). He still has an open wound which is draining and according to Carreen, is about 2 inches in diameter.
He has to go back on July 22nd to start radiation and after that chemo again.
This is all the info I got.
Kind regards.
Marietjie.
So, the MRI didn't happen. He waited for a whole day, after travelling how many hours, just to get some extra morphine syrup (they were out of tablets). He still has an open wound which is draining and according to Carreen, is about 2 inches in diameter.
He has to go back on July 22nd to start radiation and after that chemo again.
This is all the info I got.
Kind regards.
Marietjie.
Re: Tok from South Africa - Dx around 2004
Dear Marietjie
I am again upset at there flaky medical care! Has the onc doing chemo seen this area that is bleeding an quite possibly infected at this point yet?
I have a feeling that chemo will not take place till this wound is dealt with...
Is there any thing from the US that i can do? Call and yell at someone?
I wonder if he goes to the ER there and over dramatises this if they will admit him in the hospital and treat him?
This maybe ASPS even if this doesn't seem like it who knows an I am close to calling my Onc to get him some thing done from here... Can you fly him to the US?
I am again upset at there flaky medical care! Has the onc doing chemo seen this area that is bleeding an quite possibly infected at this point yet?
I have a feeling that chemo will not take place till this wound is dealt with...
Is there any thing from the US that i can do? Call and yell at someone?
I wonder if he goes to the ER there and over dramatises this if they will admit him in the hospital and treat him?
This maybe ASPS even if this doesn't seem like it who knows an I am close to calling my Onc to get him some thing done from here... Can you fly him to the US?
“Many times it is much more important to know what kind of patient has the disease, than what kind of disease the patient has”.
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
Re: Tok from South Africa - Dx around 2004
Marietjie,MarietjievdMerwe wrote:Hi everybody,
So, the MRI didn't happen. He waited for a whole day, after travelling how many hours, just to get some extra morphine syrup (they were out of tablets). He still has an open wound which is draining and according to Carreen, is about 2 inches in diameter.
He has to go back on July 22nd to start radiation and after that chemo again.
This is all the info I got.
Kind regards.
Marietjie.
It sounds like someone has determined that Tok has cancer reoccurring ?
To order chemo and radiation equals to me cancer?
I guess support is all we can give to our families sometimes. I know it must be awfully wearing on you to though.
I am so sorry for that.
Like Amanda said with the possibility of infection, you would think that the docs would be addressing that before undertaking the chemo and radiation.
Is Tok going to have to travel the long distance for the treatments? Will Carreen be able to travel with him.
Hugs to you
Debbie
Debbie
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MarietjievdMerwe
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Re: Tok from South Africa - Dx around 2004
Dear Debbie and Amanda,
The wound is infected without a doubt. According to Carreen there is huge amounts of necrotic tissue with all the unpleasantness that goes with it...
Amanda, I wish I could call somebody and yell at them!! If that was even possible, believe me I would have done it. From what I understand the dr wants to do radiation to help "heal" the wound on the arm? Would that make any difference? I know he will be admitted to hospital for 4-5 sessions of radiation.
Thereafter the plan is to start with chemo again. We all know that the kind of treatment they will be able to provide is not going to kill this monster. At this stage I want to ask myself if this is even worth the effort.
Amanda, our currency is so poor to the rest of the world, so travelling to America would unfortunately not be possible.
At the moment he is at the mercy of the drs and oncs of the state hospital system. I am not sure about the outcome. We can only pray.
I spoke to him on Thursday and he sounded a bit disheartened. He is a fighter, so I believe he will not let go.
Unfortunately Carreen will not be able to travel with him, as she has to go to work during the day.
Kind regards to everybody.
Marietjie.
The wound is infected without a doubt. According to Carreen there is huge amounts of necrotic tissue with all the unpleasantness that goes with it...
Amanda, I wish I could call somebody and yell at them!! If that was even possible, believe me I would have done it. From what I understand the dr wants to do radiation to help "heal" the wound on the arm? Would that make any difference? I know he will be admitted to hospital for 4-5 sessions of radiation.
Thereafter the plan is to start with chemo again. We all know that the kind of treatment they will be able to provide is not going to kill this monster. At this stage I want to ask myself if this is even worth the effort.
Amanda, our currency is so poor to the rest of the world, so travelling to America would unfortunately not be possible.
At the moment he is at the mercy of the drs and oncs of the state hospital system. I am not sure about the outcome. We can only pray.
I spoke to him on Thursday and he sounded a bit disheartened. He is a fighter, so I believe he will not let go.
Unfortunately Carreen will not be able to travel with him, as she has to go to work during the day.
Kind regards to everybody.
Marietjie.
Re: Tok from South Africa - Dx around 2004
Well, i feel better knowing he will be admitted and that they did say it was for the wound Thats good!!
i guess i missed that in this sorry hun <3
The medical care there is good even thru the state hospitals am told... so if they are hospitalizing him yay)
Pain weakens the warrior in us all! i am in the pain weakening phase right now also...
When the pin stops we go back to war an I am sure he will also
Sending you ah Tok huge hugs <3
Thats good!! i guess i missed that in this sorry hun <3
The medical care there is good even thru the state hospitals am told... so if they are hospitalizing him yay
) Pain weakens the warrior in us all! i am in the pain weakening phase right now also...
When the pin stops we go back to war an I am sure he will also
Sending you ah Tok huge hugs <3
“Many times it is much more important to know what kind of patient has the disease, than what kind of disease the patient has”.
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
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MarietjievdMerwe
- Member
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Re: Tok from South Africa - Dx around 2004
Dear Amanda,
Thank you for caring. Thank you for your concern. This is very heartwarming to us.
I know you are in a great deal of pain as well, having to deal with this dreadful disease.
Hugs from us all.
Thank you for caring. Thank you for your concern. This is very heartwarming to us.
I know you are in a great deal of pain as well, having to deal with this dreadful disease.
Hugs from us all.
Re: Tok from South Africa - Dx around 2004
MarietjieMarietjievdMerwe wrote:Dear Debbie and Amanda,
The wound is infected without a doubt. According to Carreen there is huge amounts of necrotic tissue with all the unpleasantness that goes with it...
Amanda, I wish I could call somebody and yell at them!! If that was even possible, believe me I would have done it. From what I understand the dr wants to do radiation to help "heal" the wound on the arm? Would that make any difference? I know he will be admitted to hospital for 4-5 sessions of radiation.
Thereafter the plan is to start with chemo again. We all know that the kind of treatment they will be able to provide is not going to kill this monster. At this stage I want to ask myself if this is even worth the effort.
Amanda, our currency is so poor to the rest of the world, so travelling to America would unfortunately not be possible.
At the moment he is at the mercy of the drs and oncs of the state hospital system. I am not sure about the outcome. We can only pray.
I spoke to him on Thursday and he sounded a bit disheartened. He is a fighter, so I believe he will not let go.
Unfortunately Carreen will not be able to travel with him, as she has to go to work during the day.
Kind regards to everybody.
Marietjie.
Prayers coming your way !
Maybe someone with more medical knowledge can explain the radiation being used on the infection on Tok's arm
Everything i am reading says not to radiate what sounds like an arm with lymphoma ?
Hang in there
Love
Debbie
Debbie