Olga,
My mistake, sorry. The mets are ,9cm or 9mm!! The medical aid provided the oxygen to use after he's had his lung op. He still has it at home and just uses it once or twice daily and for just a few minutes at a time. I will encourage him to do his breathing excercises.
I am almost certain that the coughing starts on day three of chemo because he is not moving around and refuses to get out of bed! I will have none of that in future and will see to it that he gets up during his treatment and walk around. Fortunately my husband and i are able to be with him during the days of him having his treatment as we are in the same city as the hospital where he gets his treatment.
He will start his next chemo on the 29th of May. I will keep you updated on the lungs as well.
Regards.
Marietjie.
Tok from South Africa - Dx around 2004
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MarietjievdMerwe
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MarietjievdMerwe
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Re: Tok from South Africa - Dx around 2004
Dear Feng Zhou,
I am sure the coughs are because he is VERY stubborn and does'nt want to move around when having his chemo. I have seen many patients walking up and down the hospital halls with their drips, but unfortunately my dear baby brother is a very stubborn man.
We will definitely see to it that he walks around in future. I also forgot to mention to all that he is having physiotherapy for his arm, where the primary tumor was removed, as well. He has lost a great deal of his triseps and is having difficulty lifting the arm and especially using his hand. Thanks to the sister in charge of the unit as well as dr Cohen who had the presence of mind to get a wonderfull person to help him with exercises for the arm.
Apparently he is doing extremely well with this!
Thank you for caring.
Regards.
Marietjie.
I am sure the coughs are because he is VERY stubborn and does'nt want to move around when having his chemo. I have seen many patients walking up and down the hospital halls with their drips, but unfortunately my dear baby brother is a very stubborn man.
We will definitely see to it that he walks around in future. I also forgot to mention to all that he is having physiotherapy for his arm, where the primary tumor was removed, as well. He has lost a great deal of his triseps and is having difficulty lifting the arm and especially using his hand. Thanks to the sister in charge of the unit as well as dr Cohen who had the presence of mind to get a wonderfull person to help him with exercises for the arm.Apparently he is doing extremely well with this!
Thank you for caring.
Regards.
Marietjie.
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MarietjievdMerwe
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Re: Tok from South Africa - Dx around 2004
Hi everybody,
We have been to Botswana for my niece's wedding and came back with Tok on Monday.
News on Tok is that his spirit as well as his bloodworks are still very good. Yesterday he saw the oncologist and started round 3 of chemo. Unfortunately dr Cohen had a family emergency so he saw a stand-in oncologist. He will only be back in a weeks' time, but we asked her about the brain MRI, and to my astonishment she said that it is not nessesary at this stage. If he doesn't present with ANY symptoms like vomiting or headaches, they don't find it nessesary to do a MRI. So that is back to square one for us on that subject. Also, she had a very good listen to his lungs and they seem to be very good.
The good news (for me) is that he had a swollen gland under the right arm-pit which was a bit worrying, but seemed to be ok now.
We already made an appointment for a CT on the 18th of June. He will then see dr Cohen again on the 19th and we are holding our breaths to the outcome of the CT! At this stage we are still Hopeful and also VERY positive about him getting better. I know some people will disagree, but we will always keep up Hope and I believe that there will be a good outcome.
I will contact the thoracic surgeon and also enquire about cryo done in SA. Just maybe there is somebody in SA doing it! How lucky and Blessed we would be.
Kind regards.
Groete.
Marietjie.
We have been to Botswana for my niece's wedding and came back with Tok on Monday.
News on Tok is that his spirit as well as his bloodworks are still very good. Yesterday he saw the oncologist and started round 3 of chemo. Unfortunately dr Cohen had a family emergency so he saw a stand-in oncologist. He will only be back in a weeks' time, but we asked her about the brain MRI, and to my astonishment she said that it is not nessesary at this stage. If he doesn't present with ANY symptoms like vomiting or headaches, they don't find it nessesary to do a MRI. So that is back to square one for us on that subject. Also, she had a very good listen to his lungs and they seem to be very good.
The good news (for me) is that he had a swollen gland under the right arm-pit which was a bit worrying, but seemed to be ok now.
We already made an appointment for a CT on the 18th of June. He will then see dr Cohen again on the 19th and we are holding our breaths to the outcome of the CT! At this stage we are still Hopeful and also VERY positive about him getting better. I know some people will disagree, but we will always keep up Hope and I believe that there will be a good outcome.
I will contact the thoracic surgeon and also enquire about cryo done in SA. Just maybe there is somebody in SA doing it! How lucky and Blessed we would be.
Kind regards.
Groete.
Marietjie.
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Bonni Hess
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Re: Tok from South Africa - Dx around 2004
Dear Marietjie,
It was so good to hear from you again and I am very appreciative of your thoughtful update on Tok. I am so glad that you and Tok were able to attend the happy event of your niece's wedding, and I Hope that Tok was feeling good enough to really enjoy the celebration. I am glad too that Tok's spirit and blood work remain very good, both of which are very important, and that his swollen lymph node in his arm pit seems to have resolved. I am however, very upset and alarmed by the stand-in oncologist's stubborn/inexcusable/ignorant refusal to schedule a brain MRI unless Tok is symptomatic with headaches or vomiting! Once a brain tumor causes these kind of symptoms, it may heartbreakingly be too late to successfully treat with radiosurgery like Gamma Knife. If the tumor is located in an unresectable area of the brain as many brain tumors are, this would then tragically leave no treatment options. ASPS brain mets MUST be found at the smallest most treatable size! Brittany's first two brain mets were only found after she became symptomatic with increasingly frequent morning headaches, and devastatingly they were by then too large to be successfully destroyed by the Gamma Knife treatment. Thankfully, a very skilled neurosurgeon was able to successfully remove the tumors following five months of severe and increasing brain swelling pain, but not without Brittany tragically losing her peripheral vision. Had the tumors been found at a smaller size, they would have almost certainly have been successfully destroyed by the Gamma Knife treatment as were Brittany's subsequently diagnosed several brain mets. Brittany was NOT experiencing ANY symptoms when her subsequent small brain mets were found during her regularly scheduled brain MRI's which are now done every three months to ensure diagnosis at the smallest most treatable size. AN ASPS PATIENT SHOULD NOT WAIT TO BECOME SYMPTOMATIC!!, and the oncologist needs to know, understand, and acknowledge this, and to responsibly schedule an initial and then at least once yearly brain MRI to prevent brain mets from going undiagnosed until they are too large to successfully treat. I don't want to frighten you dear Marietjie, but I want to convery to you the critical importance of an initial brain MRI followed by at least once yearly brain MRI's for ASPS patients. I just want to share the benefit of our hard earned experience in order to prevent any other ASPS patients from suffering all of the heartache and pain that our precious Brittany had to experience and endure just because her then oncologist naiively insisted that a brain CT was adequate, when tragically it was not!
My very best wishes and most positive thoughts will be with Tok and you when he has his CT scans on June 18th, and I am holding very tight to Hope that you will receive very good scan results from Dr. Cohen on the 19th. In the meantime, please take care dear Marietjie, give yourself and Tok special hugs from me, and keep in touch with the Board as you are able.
With deepest caring, healing wishes for Tok, and continued Hope,
Bonni
It was so good to hear from you again and I am very appreciative of your thoughtful update on Tok. I am so glad that you and Tok were able to attend the happy event of your niece's wedding, and I Hope that Tok was feeling good enough to really enjoy the celebration. I am glad too that Tok's spirit and blood work remain very good
, both of which are very important, and that his swollen lymph node in his arm pit seems to have resolved. I am however, very upset and alarmed by the stand-in oncologist's stubborn/inexcusable/ignorant refusal to schedule a brain MRI unless Tok is symptomatic with headaches or vomiting! Once a brain tumor causes these kind of symptoms, it may heartbreakingly be too late to successfully treat with radiosurgery like Gamma Knife. If the tumor is located in an unresectable area of the brain as many brain tumors are, this would then tragically leave no treatment options. ASPS brain mets MUST be found at the smallest most treatable size! Brittany's first two brain mets were only found after she became symptomatic with increasingly frequent morning headaches, and devastatingly they were by then too large to be successfully destroyed by the Gamma Knife treatment. Thankfully, a very skilled neurosurgeon was able to successfully remove the tumors following five months of severe and increasing brain swelling pain, but not without Brittany tragically losing her peripheral vision. Had the tumors been found at a smaller size, they would have almost certainly have been successfully destroyed by the Gamma Knife treatment as were Brittany's subsequently diagnosed several brain mets. Brittany was NOT experiencing ANY symptoms when her subsequent small brain mets were found during her regularly scheduled brain MRI's which are now done every three months to ensure diagnosis at the smallest most treatable size. AN ASPS PATIENT SHOULD NOT WAIT TO BECOME SYMPTOMATIC!!, and the oncologist needs to know, understand, and acknowledge this, and to responsibly schedule an initial and then at least once yearly brain MRI to prevent brain mets from going undiagnosed until they are too large to successfully treat. I don't want to frighten you dear Marietjie, but I want to convery to you the critical importance of an initial brain MRI followed by at least once yearly brain MRI's for ASPS patients. I just want to share the benefit of our hard earned experience in order to prevent any other ASPS patients from suffering all of the heartache and pain that our precious Brittany had to experience and endure just because her then oncologist naiively insisted that a brain CT was adequate, when tragically it was not!My very best wishes and most positive thoughts will be with Tok and you when he has his CT scans on June 18th, and I am holding very tight to Hope that you will receive very good scan results from Dr. Cohen on the 19th. In the meantime, please take care dear Marietjie, give yourself and Tok special hugs from me, and keep in touch with the Board as you are able.
With deepest caring, healing wishes for Tok, and continued Hope,
Bonni
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MarietjievdMerwe
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Re: Tok from South Africa - Dx around 2004
Dear Bonni,
It is heartbreaking to hear about Brittany and I am so so worried about Tok and the MRI. The reason I asked the oncologist yesterday about the MRI was that Tok told me he is experiencing a "pressure" on his forehead, but ONLY in the afternoon. Not pain, but just pressure. I am at wits' end and so frustrated! We are also waiting for a neurologist to see him in connection with the movement of his arm, and I will make sure that either Tok or the nursing staff tell him about the pressure.
Will let you know if when i have heard anything.
Again thank you for caring and all the good wishes. This means so much to us. Please give Brittany a special hug from her South African family.
Kind regards.
Groete.
Marietjie
It is heartbreaking to hear about Brittany and I am so so worried about Tok and the MRI. The reason I asked the oncologist yesterday about the MRI was that Tok told me he is experiencing a "pressure" on his forehead, but ONLY in the afternoon. Not pain, but just pressure. I am at wits' end and so frustrated! We are also waiting for a neurologist to see him in connection with the movement of his arm, and I will make sure that either Tok or the nursing staff tell him about the pressure.
Will let you know if when i have heard anything.
Again thank you for caring and all the good wishes. This means so much to us. Please give Brittany a special hug from her South African family.
Kind regards.
Groete.
Marietjie
Re: Tok from South Africa - Dx around 2004
Marietjie - it is not like people here in US or Canada get every scan they want right away. Some of us have to fight for it as well. The talk is cheap - when you just tell that you would need the scan, they are not impressed, but when you print out and bring the copies of the abstracts that Ivan posted re. incidence of the brain mets in ASPS, and officially leave the copies to be submitted to his clinical file - it may change their attitude as they really have no idea about ASPS specifics.
Tell them that you are not going to wait when the symptoms like vomiting or headaches are presented as in case there are the symptoms like this, some of the treatment options might be already lost or became not effective - like radiosurgery Cyber Knife or Gamma Knife or Novalis. If they still say no, look for the dispute resolution practice, how you can complain. It is very important. Or you can ask Tok to make the symptoms look more prominent than they are.
Tell them that you are not going to wait when the symptoms like vomiting or headaches are presented as in case there are the symptoms like this, some of the treatment options might be already lost or became not effective - like radiosurgery Cyber Knife or Gamma Knife or Novalis. If they still say no, look for the dispute resolution practice, how you can complain. It is very important. Or you can ask Tok to make the symptoms look more prominent than they are.
Olga
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MarietjievdMerwe
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Re: Tok from South Africa - Dx around 2004
Olga,
Just came from the hospital and I have asked Tok as well to demand a MRI. We haven't seen the neurologist yet, but I am sure Tok will demand this to be done. Unfortunately I cannot stay the whole day, but be sure that we will get this done. I am not letting go.
Just came from the hospital and I have asked Tok as well to demand a MRI. We haven't seen the neurologist yet, but I am sure Tok will demand this to be done. Unfortunately I cannot stay the whole day, but be sure that we will get this done. I am not letting go.
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Bonni Hess
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- Location: Sammamish, WA USA
Re: Tok from South Africa - Dx around 2004
Hello again Marietjie,
I am so grateful that Tok has such a caring and pro-active advocate as you. He certainly shouldn't have to fight the medical system to get the scans that he needs because the battle with this challenging disease is difficult enough! Again, I don't want to alarm you, but Brittany often complained of "pressure" headaches when she had her brain tumors. Morning headaches are often a symptom of brain tumors (something that we learned from her neurologist after Brittany was diagnosed with them), but that doesn't necessarily mean that brain tumor related headaches ONLY occur in the morning. On the other hand, the "pressure" that Tok is experiencing on his forehead could be related to his chemo or another benign cause, but it definitely needs to be evaluated with a brain MRI. It is always better to err on the side of caution! I Hope that a brain MRI can and will be scheduled as soon as possible to rule out brain mets as a cause of Tok's forehead "pressure", and I am holding VERY tight to Hope that no brain mets will be found.
Thank you for your long distance hugs for Brittany, and please feel my arms reaching back with special hugs for Tok, you, and your family.
With special caring thoughts, healing wishes for Tok, and continued Hope,
Bonni
I am so grateful that Tok has such a caring and pro-active advocate as you. He certainly shouldn't have to fight the medical system to get the scans that he needs because the battle with this challenging disease is difficult enough! Again, I don't want to alarm you, but Brittany often complained of "pressure" headaches when she had her brain tumors. Morning headaches are often a symptom of brain tumors (something that we learned from her neurologist after Brittany was diagnosed with them), but that doesn't necessarily mean that brain tumor related headaches ONLY occur in the morning. On the other hand, the "pressure" that Tok is experiencing on his forehead could be related to his chemo or another benign cause, but it definitely needs to be evaluated with a brain MRI. It is always better to err on the side of caution! I Hope that a brain MRI can and will be scheduled as soon as possible to rule out brain mets as a cause of Tok's forehead "pressure", and I am holding VERY tight to Hope that no brain mets will be found.
Thank you for your long distance hugs for Brittany, and please feel my arms reaching back with special hugs for Tok, you, and your family.
With special caring thoughts, 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
Dearest Bonni,
As always, its heartwarming to hear from you. This is one promise i have made to myself: i will do EVERYTHING in my power to help my baby brother. Sometimes its just so frustrating when you hit the medical wall, but i will keep on battling this one.
We will be visiting him again today, and today i want an answer even if i have to harass the dr!
Thank you for understanding and your encouragement is really what we need at this moment.
We are doing the best we can under the circumstances.
Let you know when we get back this afternoon.
Regards.
Marietjie.
As always, its heartwarming to hear from you.
This is one promise i have made to myself: i will do EVERYTHING in my power to help my baby brother. Sometimes its just so frustrating when you hit the medical wall, but i will keep on battling this one. We will be visiting him again today, and today i want an answer even if i have to harass the dr!
Thank you for understanding and your encouragement is really what we need at this moment.
We are doing the best we can under the circumstances.
Let you know when we get back this afternoon.
Regards.
Marietjie.
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Bonni Hess
- Senior Member
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- Location: Sammamish, WA USA
Re: Tok from South Africa - Dx around 2004
Dear Marietjie,
I Hope that Tok is doing well with his chemo. I know so well how the scanxiety increases as the scan date approaches. My most positive thoughts and very best wishes will be with Tok and your family when he has his status scans tomorrow, and I will be holding VERY tight to Hope for good news scan results at your meeting with Dr. Cohen on Tuesday which show stable disease and tumor shrinkage/disappearance. In the meantime, please take care Marietjie, give Tok and yourself special hugs from me, and keep in touch with the Board as you are able.
Reaching out across the miles to share deepest caring, healing wishes for Tok, warm friendship, and continued Hope,
Bonni
I Hope that Tok is doing well with his chemo. I know so well how the scanxiety increases as the scan date approaches. My most positive thoughts and very best wishes will be with Tok and your family when he has his status scans tomorrow, and I will be holding VERY tight to Hope for good news scan results at your meeting with Dr. Cohen on Tuesday which show stable disease and tumor shrinkage/disappearance. In the meantime, please take care Marietjie, give Tok and yourself special hugs from me, and keep in touch with the Board as you are able.
Reaching out across the miles to share deepest caring, healing wishes for Tok, warm friendship, and continued Hope,
Bonni
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MarietjievdMerwe
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Re: Tok from South Africa - Dx around 2004
- Tok Scan p2.jpg (60.79 KiB) Viewed 9680 times
- Tok Scan p1.jpg (59.95 KiB) Viewed 9680 times
Thank you so much for your kind wishes. We received the best best best news ever!!! I tried to attach the report, please let me know if you are able to read this. I cried so much, my glasses doesn't even fit!
Tok started his 4th chemo today and according to dr Cohen he will be receiving 6 chemo sessions.
There is still Hope, God is great.
Kindest regards.
Marietjie.
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Bonni Hess
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Re: Tok from South Africa - Dx around 2004
Dear Marietjie,
WOW!! This is WONDERFUL!! news and these are incredible and VERY encouraging scan results showing such significant shrinkage of Tok's multiple lung mets I am sharing your great joy and strengthened Hope with immense happiness, and reaching out to embrace you and Tok with happy hugs and special High Fives . Thank you for your very thoughtful and prompt sharing of the results. My continued most positive thoughts and energy and very best wishes are with Tok for a continued very successful response to his chemo. Take care Marietjie, enjoy celebrating the GOOD NEWS!!, and keep in touch as you are able.
With much happiness in my heart, special caring thoughts, healing wishes for Tok, and continued Hope,
Bonni
WOW!! This is WONDERFUL!! news and these are incredible and VERY encouraging scan results showing such significant shrinkage of Tok's multiple lung mets
I am sharing your great joy and strengthened Hope with immense happiness, and reaching out to embrace you and Tok with happy hugs and special High Fives . Thank you for your very thoughtful and prompt sharing of the results. My continued most positive thoughts and energy and very best wishes are with Tok for a continued very successful response to his chemo. Take care Marietjie, enjoy celebrating the GOOD NEWS!!, and keep in touch as you are able.With much happiness in my heart, special caring thoughts, healing wishes for Tok, and continued Hope,
Bonni
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MarietjievdMerwe
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Re: Tok from South Africa - Dx around 2004
Dear Bonni,
As always, thank you so much for sharing our happiness. Tok is doing fine at the moment. He is still in hospital but will be going home tomorrow morning. This time around he is just extremely tired and can't seem to keep his eyes open. He is still in very good spirits and I do admire his positivity a great deal.
He will only see dr Cohen in a month's time, so there are four weeks of rest and fishing for him to look forward to.
Special caring thoughts and hugs for Brittany as well. You already have a special place in our hearts.
Kind regards.
Marietjie.
As always, thank you so much for sharing our happiness. Tok is doing fine at the moment. He is still in hospital but will be going home tomorrow morning. This time around he is just extremely tired and can't seem to keep his eyes open. He is still in very good spirits and I do admire his positivity a great deal.
He will only see dr Cohen in a month's time, so there are four weeks of rest and fishing for him to look forward to.
Special caring thoughts and hugs for Brittany as well.
You already have a special place in our hearts. Kind regards.
Marietjie.
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MarietjievdMerwe
- Member
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Re: Tok from South Africa - Dx around 2004
Hi everybody!
It's been a while. Tok is doing fine at the moment. He had a bit of a rough time three weeks ago. Had no bloodcount whatsoever and had to receive two units of blood.
He just finished his fifth round of chemo on Saturday and is safe and sound at home, looking nothing worse for wear. He is in very good spirits after receiving the wonderful news last time we did the scan.
Got him a weight to start exercising the arm as this seems to be neglected at the moment. Everybody is concentrating on chemo and nothing is happening with his arm.
Hopefully we'll see some results when I see him again in three weeks' time for Hopefully his last session of chemo.
Keep well everybody and please keep Faith and Hope in your hearts.
Kind regards.
Marietjie.
It's been a while.
Tok is doing fine at the moment. He had a bit of a rough time three weeks ago. Had no bloodcount whatsoever and had to receive two units of blood. He just finished his fifth round of chemo on Saturday and is safe and sound at home, looking nothing worse for wear.
He is in very good spirits after receiving the wonderful news last time we did the scan.Got him a weight to start exercising the arm as this seems to be neglected at the moment. Everybody is concentrating on chemo and nothing is happening with his arm.
Hopefully we'll see some results when I see him again in three weeks' time for Hopefully his last session of chemo.
Keep well everybody and please keep Faith and Hope in your hearts.
Kind regards.
Marietjie.
Re: Tok from South Africa - Dx around 2004
Marietjie - thanks for an update. We are most sincerely hoping that Tok's lung mets are shrinking on the traditional chemotherapy, that the next scan will bring more good news. It is unusual and very welcome event in our community to hear about the positive response to traditional chemo, although we already have few cases that we know of and all of them were the responses in the similar situation - when the bulk of the lung mets were resected and the chemotherapy was initiated for the residual lung mets that could not be resected in time of surgery or the ones that appeared after the surgery as they were to small in time of the surgery to be seen on the scan and to be palpated by the surgeon. We can only speculate why it only works in that sequence - a previous surgery and a chemo after, but every reported treatment - successful or not - brings us some information that could be used by other people to build on. Thank you for the continued updates and our best wishes to Tok.
Olga