Tok from South Africa - Dx around 2004

[Olga]

Marietjie - we are happy for Tok and thank you so much for sharing this unique case with us. It is the only case that I have ever heard of when the ASPS patient lung mets reacted that dramatically to the traditional chemotherapy. Do you want to talk to his doctor if he might want to publish the single case article somewhere, so it would get recorded for the other oncologists to take a note.

[MarietjievdMerwe]

Dear Olga,

Thanks for sharing our delight and so much happiness with us. I will most certainly contact dr Cohen and ask him about this. Will let you know as soon as I have heard from him.

Very best wishes to Ivan.
Regards.
Marietjie.

[Bonni Hess]

Dear Marietjie,
What wonderful and joyous news to come back to after having been away from the computer and this Board for the past several days due to Thanksgiving and a houseful of company. I am SO VERY happy for Tok and your family and SO deeply grateful for this VERY GOOD and encouraging news!! Tok's dramatic tumor shrinkage/disappearance and very successful response to this traditional chemo treatment, which has unfortunately been unsuccessful for the majority of ASPS patients who have been treated with it, truly proves the unpredictability of this very rare disease and the fact that each patient is unique and may respond differently to different treatments. I really admire the doctor,Tok, and your family for believing in, and persevering through, the treatment with this typically unsuccessful chemo.
However, since this disease is so unpredictable, I would encourage you to discuss/request that Dr. Cohen continue to monitor Tok's disease with chest/abdominal/pelvic CT's every three to six months, rather than just a chest x-ray which cannot detect small amounts of growth or any new mets at their smallest size, and to continue to schedule annual brain MRI's and bone scans.
In the meantime, please know how deeply I and my family are sharing your great joy and relief and celebrating Tok's VERY GOOD!! scan results across the miles. Take care dear Marietjie, enjoy a most beautiful and joyous Holiday season and coming New Year shared together with your family, and keep in touch with the Board as you are able.
With great joy in my heart, happy hugs, special caring thoughts, and continued Hope,
Bonni

[Olga]

Dear Marietjie, I was wondering when is the next CT scan for Tok?
His dramatic response to the traditional chemotherapy adds some anecdotal evidence that smaller ASPS mets might be more sensitive to chemotherapy and although the response it almost always incomplete, the following resection of the remaining mets may capitalize on a success and provide a long term solution.

[MarietjievdMerwe]

Hi Olga!

Tok will see dr Cohen in Feb (not sure about the date), but this time only for a chest x-ray and some bloodtests. He will be having a CT again in May, if i recall correctly. He is doing very well at the moment. Spoke to him on Christmas day and apart from the normal age-associated aches and pains, he had nothing to complain about.
Unfortunately he lost a great deal of the muscle on his right arm and has only limited use, but he is learning very quickly to do things with his left hand!
I also sent dr Cohen an email about your request, but have not heard from him yet. Will try and contact him again.

Thank you Olga, for caring.

Very best wishes from a scorching South Africa!

Regards.
Marietjie.

[MarietjievdMerwe]

Olga,

I only now saw Amanda's post on Tok's good results! Where on the forum do I say thanks to her?
Marietjie.

[Olga]

You can say thanks right here or sent a private message trough the User control panel. Any general greetings and conversations can be carried at the Guest book.
Re.Tok loss of use its right arm. Do you know that Ivan's primary was also in his right arm? I realize that everyone's surgery is different but he also lost 2 muscles there and was doing lots of exercises to recover the function and the remaining muscle filled the gap completely and he has no limitations of using his right arm, other people would never guess he ever had such a surgery there.

[MarietjievdMerwe]

After_op.jpg (14.65 KiB) Viewed 6732 times

Dear Olga,
I didn't realise Ivan's was also on his right arm. Unfortunately Tok had to go for two surgeries on the arm. His wound didn't heal enough and he had surgery the second time around to remove the dead tissue. This was again trying times for us as the orthopedic surgeon removed more skin and tissue. Unfortunately the aftercare was not up to standard which was so sad.

He got a splint to wear over the top of his wrist with elastic bands on the bottom to hold his fingers in position. I suspect that he wore this way too long and did not get ANY excercise whatsover to keep his hand going.

He has perfectly good use of the arm but the problem lies with his wrist. He is not able to lift his hand. Only when the wrist is getting support he is able to keep it in position. He is able to close his fingers, but cannot open them without help.

He is however trying his utmost to excercise the arm, but i am afraid that it may be too late. The damage is done. Everybody was so focused on getting rid of the cancer that nobody noticed him battling to keep the wrist going.

As I have said to Ivan before, he is a bit of a hard headed person. Unfortunately.
I do include a photo of his arm after the first surgery.
Marietjie.

[Olga]

Ivan's surgeon reattached some tendons from the other fingers to keep the movement of the palms, may be Tok should consult someone re. reconstructive surgery.

[MarietjievdMerwe]

Olga,
I am sure that is the plan for the near future. His main concern at this stage is getting his business back on track again. We will talk about this when he sees dr Cohen in Feb.

The orthopedic surgeon told him then that he did his best not to "damage the nerve". Just hope his best was good enough as he was not a very kind person.

At the moment Tok is in high spirits and is doing fine.

Regards.
Marietjie.

[MarietjievdMerwe]

Hi Everybody,

I spoke to brother Tok today and unfortunately he had to postpone his appointment with dr Cohen on Monday. He will only see him on March 15 again.

Kind regards.

Marietjie.

[Olga]

Marietjie, I hope that Tok is doing better. When is his next CT scan due?

[MarietjievdMerwe]

Olga,

On looks and overall wellbeing Tok is doing great, thank you. He is running his business and doing his day to day chores. He is very positive as well, so are all of us.
I am sure dr Cohen will arrange for a CT when he sees Tok again in March. I will let you know.

Have a great day.
Regards.

[Olga]

We usually have it other way around - the CT scan and other scans are arranged in advance at about 4-5 months interval and Ivan get it in about 1-2 weeks before of the meeting with the oncologist so when we meet the results are given, otherwise what is the point of meeting an oncologist if the current status is unknown.

[MarietjievdMerwe]

Dr Cohen is only going to do a normal chest x-ray this time around. It will be 4 months since he has seen Tok. He wanted to see Tok within 3 months but unfortunately Tok could not make the appointment.

For his next appointment (6 months since the last CT) he will do a CT the day before he sees Tok. Then he will have all the results he needed. I suspect there will be a blood test as well. That's what he did in the past.