News on Tok is that he is not doing great.
His arm, where the primary was removed was swolen and he saw the dr this morning who also did some blood tests. Seems all his counts are ok, but his cancer count is 3.1
This means the cancer has flared up again? Is this high or just an indication that the cancer is "active", by lack of a better word.
It seems that his wife will be able to get him into one of our State Hospitals here in our city of Pretoria. This has to be done within the first week of January.
Oh, and the arm apparantely has been bandaged to help with lymph drainage.
Just an update. As soon as I heard anything else, i'll post again.
Keep well everybody.
Kind regards.
Marietjie.
Tok from South Africa - Dx around 2004
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MarietjievdMerwe
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Re: Tok from South Africa - Dx around 2004
Marietjie, thank you for an update. I am very sorry to hear about the problems with the Tok arm, but I do not really know what is the cancer count and if 3.1 s to high. There are specific cancer antigens counts that used for other types of cancer like PSA for the prostate cancer, but I am not aware of any general cancer antigen count that could be used for ASPS. MRI or even ultrasound might be more helpful, but I suspect it is going to be a problem to get one since he has no private insurance now? There are could be benign causes of the swelling like Lymphedema, may be the compression bandaging does not works and it is progressing. It is a progressive condition that may actually be a reason for this swelling and is a potentially very dangerous one. Read this article:
http://www.lymphedema-guidebook.com
http://www.lymphedema-guidebook.com
Olga
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MarietjievdMerwe
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Re: Tok from South Africa - Dx around 2004
Olga,
Thank you for the prompt response. I've read the article that you suggested, but unfortunately i don't have any more info on what tests have been done. Will know in two weeks' time.
And by that time we'll hopefully know if he will be admitted to hospital and treatment etc.
Regards.
Marietjie.
Thank you for the prompt response. I've read the article that you suggested, but unfortunately i don't have any more info on what tests have been done. Will know in two weeks' time.
And by that time we'll hopefully know if he will be admitted to hospital and treatment etc.
Regards.
Marietjie.
Re: Tok from South Africa - Dx around 2004
Marietjie
Prayers for good news on Tok's condition
Love
Debbie
Prayers for good news on Tok's condition
Love
Debbie
Debbie
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MarietjievdMerwe
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Re: Tok from South Africa - Dx around 2004
Thank you dear Debbie! Will keep the board updated as I am able.
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Bonni Hess
- Senior Member
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- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Tok from South Africa - Dx around 2004
Dear Marietjie,
I am so sorry for the concerning swelling that Tok is experiencing in his arm, but am Hopeful that it is not related to his ASPS and that it can be easily treated and resolved. I am grateful that his wife will be able to get him into the hospital soon where he will Hopefully receive appropriate scans and good medical care and treatment to diagnose and resolve the swelling. Like Olga, I am unfamiliar with what a "cancer count" from the blood work is, and what it indicates. This is not a term that has ever been used by any of Brittany's doctors when discussing Brittany's blood work results. I will be anxiously awaiting your next update with more information about Tok's situation, and in the meantime I will be holding very tight to Hope for good news as I continue to hold Tok and your family very close in my heart and most caring thoughts.
With warm hugs, deepest caring, healing wishes for Tok, and continued Hope,
Bonni
I am so sorry for the concerning swelling that Tok is experiencing in his arm, but am Hopeful that it is not related to his ASPS and that it can be easily treated and resolved. I am grateful that his wife will be able to get him into the hospital soon where he will Hopefully receive appropriate scans and good medical care and treatment to diagnose and resolve the swelling. Like Olga, I am unfamiliar with what a "cancer count" from the blood work is, and what it indicates. This is not a term that has ever been used by any of Brittany's doctors when discussing Brittany's blood work results. I will be anxiously awaiting your next update with more information about Tok's situation, and in the meantime I will be holding very tight to Hope for good news as I continue to hold Tok and your family very close in my heart and most caring thoughts.
With warm hugs, deepest caring, healing wishes for Tok, and continued Hope,
Bonni
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MarietjievdMerwe
- Member
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Re: Tok from South Africa - Dx around 2004
Dear Bonni,
I got this whatsapp from Carreen, Tok's wife: "They did'nt do a specific cancer test- just on the full blood count it shows a 3.1. I'll find out by Susan (lab assistant) excactly what the numonic was. She was just in a state and said she's worried, but dr Buys wasn't that worried. Dr Buys also said the red/white blood cells as well as the platelets are good."
This is the only info that i currently have. I suspect the full blood count shows that there could be an infection of some sorts in the arm? Could this be? I also know that all of his stitches couldn't be removed, because it was too tight. So the wound sister only clipped it at the surface. I am just wondering if this could be a contributing factor?
What worries me personally is that neither Tok or Carreen are clued up on this monster. They haven't read any articles on ASPS. All the info has to come from me. This is also very stresfull and so frustrating!
So many questions..
Kind regards.
Marietjie.
I got this whatsapp from Carreen, Tok's wife: "They did'nt do a specific cancer test- just on the full blood count it shows a 3.1. I'll find out by Susan (lab assistant) excactly what the numonic was. She was just in a state and said she's worried, but dr Buys wasn't that worried. Dr Buys also said the red/white blood cells as well as the platelets are good."
This is the only info that i currently have. I suspect the full blood count shows that there could be an infection of some sorts in the arm? Could this be? I also know that all of his stitches couldn't be removed, because it was too tight. So the wound sister only clipped it at the surface. I am just wondering if this could be a contributing factor?
What worries me personally is that neither Tok or Carreen are clued up on this monster. They haven't read any articles on ASPS. All the info has to come from me. This is also very stresfull and so frustrating!
So many questions..
Kind regards.
Marietjie.
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Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Tok from South Africa - Dx around 2004
Dear Marietjie,
Tok and Careen are very fortunate to have your special support and involvement but I am so sorry that the enormous burden of research and networking falls so heavily on you. It is always very difficult for me to understand why some patients and their spouses/parents aren't more pro-active and personally involved in doing everything possible to fight this very challenging disease, but for some people it seems easier to remain in denial with a laissez faire attitude, or to just put everything in the doctors' or God's hands which unfortunately does not always work. As you and those of us who participate on this Board know, this is a battle which requires as much available researched and shared anecdotal information and every possible weapon to fight it, and tragically even then sometimes that is not enough. Sadly it is sometimes too late by the time that some people come to this harsh realization of the critical importance of being very pro-active and vigilant with scans and treatment.
I'll be anxiously awaiting your next update with the results of Tok's hospitalization to try to determine and treat the cause of his arm swelling. In the meantime, I Hope that you will be able to enjoy a very happy New Year celebration that will be bright with the Hope of complete healing for Tok in the coming year 2014.
With special hugs, caring thoughts, healing wishes for Tok, and continued Hope,
Bonni
Tok and Careen are very fortunate to have your special support and involvement but I am so sorry that the enormous burden of research and networking falls so heavily on you. It is always very difficult for me to understand why some patients and their spouses/parents aren't more pro-active and personally involved in doing everything possible to fight this very challenging disease, but for some people it seems easier to remain in denial with a laissez faire attitude, or to just put everything in the doctors' or God's hands which unfortunately does not always work. As you and those of us who participate on this Board know, this is a battle which requires as much available researched and shared anecdotal information and every possible weapon to fight it, and tragically even then sometimes that is not enough. Sadly it is sometimes too late by the time that some people come to this harsh realization of the critical importance of being very pro-active and vigilant with scans and treatment.
I'll be anxiously awaiting your next update with the results of Tok's hospitalization to try to determine and treat the cause of his arm swelling. In the meantime, I Hope that you will be able to enjoy a very happy New Year celebration that will be bright with the Hope of complete healing for Tok in the coming year 2014.
With special hugs, caring thoughts, healing wishes for Tok, and continued Hope,
Bonni
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MarietjievdMerwe
- Member
- Posts: 162
- Joined: Fri Apr 13, 2012 7:59 am
Re: Tok from South Africa - Dx around 2004
Dear Bonni and ASPS friends,
Tok decided not to see a doctor again. From what I understand he is getting his arm bandaged every day by wife Carreen and is doing fine. Words cannot even BEGIN to describe how FRUSTRATED I am with them.
Just wanted to keep you updated on the latest news.
I have in the meantime a dear friend who is fighting cancer with EVERYTHING she's got! Therefore I cannot understand the carelessness that Tok is displaying.
In fact, my eldest daughter called his desicion "stupidity"....
Keep well everybody and kind regards to all.
Marietjie.
Tok decided not to see a doctor again. From what I understand he is getting his arm bandaged every day by wife Carreen and is doing fine. Words cannot even BEGIN to describe how FRUSTRATED I am with them.
Just wanted to keep you updated on the latest news.
I have in the meantime a dear friend who is fighting cancer with EVERYTHING she's got! Therefore I cannot understand the carelessness that Tok is displaying.
In fact, my eldest daughter called his desicion "stupidity"....
Keep well everybody and kind regards to all.
Marietjie.
Re: Tok from South Africa - Dx around 2004
Hello Marietjie
I am sorry he is at this stage saying no to treatments other than his arm...
I am in a war at this moment an i want a week off also! I will take a few after this surgery to be spoiled and sleep like a cat <3
I am sure it will be short lived an he will back though on the war path! He is way too bright and full of life to just stop... so please just try an understand and tell him that you love him and that though it is breaking your heart you are behind him for the long run if an when he also wants to fight again that you are staying on the war path till he returns so no time is lost ... Let him know many do this its normal and i think healthy! *But he has a week* lol
For myself and others i have gone thru a few days or a week at times i am fed up.. Yep i have done this a few times you have to its letting steam off! an cancer takes your life into a kidnap stage an all you want to do is have your life back and in your control...
For myself i took a week to make the decision i wasn't going to do a thing and maybe never again!
I was dam mad!
I was sick of not being in full control!
I was sad and morning myself pre cancer!
Oh hun the list for myself and its emotions is so long and others have their own lists...
Tell him i did this also and tell him i realized that i had control the whole dam time an then i came back like fire!!! an a lil meaner hehe
Tell him i said that he has a week to be in control and take a well deserved break an that he can do this again!
Tell him i said the few that took longer regretted it an damit don't do that also!
sending you HUGE HUGS!!! xox
I am sorry he is at this stage saying no to treatments other than his arm...
I am in a war at this moment an i want a week off also! I will take a few after this surgery to be spoiled and sleep like a cat <3
I am sure it will be short lived an he will back though on the war path! He is way too bright and full of life to just stop... so please just try an understand and tell him that you love him and that though it is breaking your heart you are behind him for the long run if an when he also wants to fight again that you are staying on the war path till he returns so no time is lost ... Let him know many do this its normal and i think healthy! *But he has a week* lol
For myself and others i have gone thru a few days or a week at times i am fed up.. Yep i have done this a few times you have to its letting steam off! an cancer takes your life into a kidnap stage an all you want to do is have your life back and in your control...
For myself i took a week to make the decision i wasn't going to do a thing and maybe never again!
I was dam mad!
I was sick of not being in full control!
I was sad and morning myself pre cancer!
Oh hun the list for myself and its emotions is so long and others have their own lists...
Tell him i did this also and tell him i realized that i had control the whole dam time an then i came back like fire!!! an a lil meaner hehe
Tell him i said that he has a week to be in control and take a well deserved break an that he can do this again!
Tell him i said the few that took longer regretted it an damit don't do that also!
sending you HUGE HUGS!!! xox
“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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- Joined: Fri Apr 13, 2012 7:59 am
Re: Tok from South Africa - Dx around 2004
Dear Dear Amanda!
You ALWAYS manage to make me smile. Next time I see my hardheaded brother, i will SHOW him your message! Thanks for your kind response and thank you for understanding me letting off some steam...
You keep on fighting this hideous monster and i sure as lightning will tell Tok to keep on fighting.
God bless Amanda!
You ALWAYS manage to make me smile.
Next time I see my hardheaded brother, i will SHOW him your message! Thanks for your kind response and thank you for understanding me letting off some steam...You keep on fighting this hideous monster and i sure as lightning will tell Tok to keep on fighting.
God bless Amanda!
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Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Tok from South Africa - Dx around 2004
Dear Marietjie,
I am so sorry about Tok's current laissez faire attitude about his medical care which is causing you so much stress and anguish, but as a patient who truly knows and understands what Tok is going through, Amanda has shared some excellent insights into what he is probably thinking and feeling right now. I agree with Amanda that Tok is probably just angry and tired of the battle and all that it entails with all of the doctor appointments, procedures, and treatments, and just wants a break from it all and a feeling of having regained some control over his Life and a return to some sense of normalcy. Hopefully he will very soon regain his willingness to keep fighting his disease and resume his courageous battle, but this is ultimately a decision that he will have to make and a conclusion that he will have to reach on his own. In the meantime, all you can do is remain constant, as you have so lovingly and faithfully done throughout his battle, with your love and your strengthening support and encouragement. Take care dear Marietjie and keep in touch as you are able.
With special hugs, deepest caring, healing wishes for Tok, and continued Hope,
Bonni
I am so sorry about Tok's current laissez faire attitude about his medical care which is causing you so much stress and anguish, but as a patient who truly knows and understands what Tok is going through, Amanda has shared some excellent insights into what he is probably thinking and feeling right now. I agree with Amanda that Tok is probably just angry and tired of the battle and all that it entails with all of the doctor appointments, procedures, and treatments, and just wants a break from it all and a feeling of having regained some control over his Life and a return to some sense of normalcy. Hopefully he will very soon regain his willingness to keep fighting his disease and resume his courageous battle, but this is ultimately a decision that he will have to make and a conclusion that he will have to reach on his own. In the meantime, all you can do is remain constant, as you have so lovingly and faithfully done throughout his battle, with your love and your strengthening support and encouragement. Take care dear Marietjie and keep in touch as you are able.
With special hugs, deepest caring, healing wishes for Tok, and continued Hope,
Bonni
Re: Tok from South Africa - Dx around 2004
Marietjie
All I can add to Amanda's and Bonni's posts are AMEN.
You are such a good person and sister please give yourself a hug!
Love
Debbie
All I can add to Amanda's and Bonni's posts are AMEN.
You are such a good person and sister please give yourself a hug!
Love
Debbie
Debbie
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MarietjievdMerwe
- Member
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- Joined: Fri Apr 13, 2012 7:59 am
Re: Tok from South Africa - Dx around 2004
Hi everybody,
It's been a while...
Tok is not doing great at the moment. I saw him three weeks ago and the following week he had been admitted to (state)hospital for nine days with a suspected infection in his right shoulder-directly above the scar where his primary was removed. Countless bloodtests later the dr treated him for an infection of some sorts.
He saw a dr in a nearby town during last week and he will be admitted to the same hospital again on Tuesday. Apparently there the drs will decide where to send him for a CT as well as an MRI. One dr bluntly announced that this was ASPS all over again! This was a great shock to me as this man did not do any scans to verify his stupidity. Sorry.
At this stage, as I understand from our beloved Mom, he is considering amputation as the arm is of no use to him.
Oh, and his bloodtests also showed no oedema? If the arm was so swolen (twice the normal size according to Mom), then surely this could have been oedema?
In the meantime we can only hope and pray that we will have an answer regarding further treatment by the end of Thuesday.
I will keep the board updated as I am able.
Kind regards.
Marietjie.
It's been a while...
Tok is not doing great at the moment. I saw him three weeks ago and the following week he had been admitted to (state)hospital for nine days with a suspected infection in his right shoulder-directly above the scar where his primary was removed. Countless bloodtests later the dr treated him for an infection of some sorts.
He saw a dr in a nearby town during last week and he will be admitted to the same hospital again on Tuesday. Apparently there the drs will decide where to send him for a CT as well as an MRI. One dr bluntly announced that this was ASPS all over again! This was a great shock to me as this man did not do any scans to verify his stupidity. Sorry.
At this stage, as I understand from our beloved Mom, he is considering amputation as the arm is of no use to him.
Oh, and his bloodtests also showed no oedema? If the arm was so swolen (twice the normal size according to Mom), then surely this could have been oedema?
In the meantime we can only hope and pray that we will have an answer regarding further treatment by the end of Thuesday.
I will keep the board updated as I am able.
Kind regards.
Marietjie.
Re: Tok from South Africa - Dx around 2004
Hi Marietjie
I am so sorry for Toks hospitalization : (
Hopefully the tests will give us all some more information in which to talk about
Do you know what kind of antibiotics he is taking ?
Have there been scans/ultra sound?
Stay strong
Much love
Debbie
I am so sorry for Toks hospitalization : (
Hopefully the tests will give us all some more information in which to talk about
Do you know what kind of antibiotics he is taking ?
Have there been scans/ultra sound?
Stay strong
Much love
Debbie
Debbie