Tok from South Africa - Dx around 2004

[MarietjievdMerwe]

Hi All,
Tok travelled again this morning to start radiation on his arm, but only the markings were done. He has to go back on the 4th of August to start three sessions of radiation. This will be done every other day.
If there is a bed available in hospital, he will be staying over, otherwise he has to travel back and forth.
The onc is still convinced that he should have had radiation done after his primary was removed.
Keep well everybody.
Regards.
Marietjie.

[D.ap]

Hi Marietjie

I am glad that things are moving forward and pray that a bed is available to Tok for his treatment so he can rest after his long trip and treatment.
Does the doctor think the arm infection/possible cancer was the result of lack of radiation ?

We all hope Tok is getting some relief from his pain.

Love,
Debbie

[MarietjievdMerwe]

Dear Debbie,
Seems like Tok would prefer the long drive home and sleeping in his own bed.

Debbie, according to him the dr was very surprised that he didn't receive radiation. As i have said before (I think I did), the orthopedic surgeon who removed his primary prescribed 30 days of radiation, but dr Cohen didn't find it nescessary.

From what I have read, the radiation wouldn't have made any difference. Maybe helped the healing? Amanda also had radiation which did not help at all?

But, as you have said Debbie, this is progress. He is however still in a lot of pain.

Love.
Marietjie.

[D.ap]

I will cancel prayer for the room.
However keep the one going for a safe trip etc.

I agree maybe the healing would of benefited. However the radiation may of worsened the arm.
Thanks for keeping us in the loop.

Love
Debbie

[MarietjievdMerwe]

Dear Debbie,
You made me smile, thanks my Friend.

Please keep up the prayers.

At the moment we have to go with whatever the onc decides, good or bad. We will know shortly if this was a good decision.

[Olga]

Marietjie, I am really not sure what is going on with this plan of Tok's new oncologist...radiation does not help with the healing, it actually very much interferes with the healing and makes wounds worse. Its goal is to prevent the local recurrence which is a very rare event in ASPS - but only IF it is resected properly, so called clean R0 resection. It is hard to say how good was the initial resection done for Tok. But to administer the radiation for a post resection non-healing wound - I really have no idea what is the goal, they would need to have a positive MRI/biopsy first to confirm the local recurrence, then to redo the resection - remove the recurrence, then they may add radiation in attempt to prevent another local recurrence. Do they have a positive confirmation that there is local recurrence? Using radiation just to help with the wound healing does not make any sense. I am sorry to say that and I hope that the plan is actually different and all the confusion is based on a incomplete information you and we get.

[D.ap]

Olga,

Do you think this article appropriate to show or send to the doctor?
Talking about the cons of radiation

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2206003/

Also the fact that if the wound is not recovering because it is an incomplete resection of Tok's previous surgery ,would it be appropriate to amputate the arm if that is his wish?
It sure sounds like between the possible infection and the possible cancer , the doctors are prolonging poor Tok's pain for not a lot of return to his well being .


Thanks
Debbie

[MarietjievdMerwe]

To be blunt: Tok doesn't want the arm anymore. To answer your question Debbie, personally I don't think the dr has got a clue what to do with him and will not listen to him wanting an amputation. Also, I would not know where to contact the dr as I don't even have a name and there is very little info on the hospital available...
I know this sounds like a horror movie, but we were expecting this.
Olga, his treatment is based on the CT done resently. Again, I question the dr's ability to "read" the CT.

[Amanda]

Ok i think it is time we reach out beyond who he is seeing...

Is there anyone in this forums that knows of anyone at the NIH?

Or anyone with an rare cancer group that is world wide?

Margie can you get him to the USA if there was help?

or to another country that would have a doctor to help?

I truly now believe that though this Dr may have all the greatest intensions an i am stretching that !!!

He is 100% NOT in knowledge of how to deal with this cancer an should have referred our ASPS brother to another hospital an Dr...

Margie do they speak english at this hospital an will his wife get you the information to post it here hun?

I will call a local of doctors with pout boarders an ask for help also...
I am home an bored an frustrated i am spinning my wheels. I would like to help an i can be very persuasive in matters like this!

I know you an he an the whole family are upset... i cant imagine how hard this is for all of you! An my brother there that i agree should have the arm removed at this point god bless hm for this suffering an patience!

Please hun when you can post information here so i can start... an then in private if i do get the wheels moving i will give you the information and phone number to contact who ever i can get to help and you can give the personal information to him..
i will stay on board till wednesday next week on thursday i will have my operation... After i have to go to have this operation i would hope that things would be rolling an after i am home iw ill continue to follow up to make sure no one drops a ball! There are groups that advocate i am sure for rare cancer
treatments in the world. we just need to reach out to them! This will help me also <3

I will check back in a few hours!
Lots of love and hope!

[MarietjievdMerwe]

Dear Sweetest Amanda,
I am doing the ugly cry, not with sadness, but with heartfelt gratitude. Unfortunately my dear Friend, he doesn't even have a passport. This will remain a dream, but for now I think we will have to treat him in SA.
I am so very very thankful for your enthusiasim and wanting to help him.
I will in the meantime try to get hold of somebody in that hospital. God alone knows how I am going to do this, but maybe I could get hold of somebody who will speak to me. If I can manage this, I will inform the Board. Prayers will be welcome.
Amanda, I know you mean well, but you have to think about your own health. I do appreciate you wanting to help Tok, but you are having to fight this monster yourself.
We will keep on fighting.
Please look after yourself. And focus your energy on getting better and healthy yourself.
Lots of love.
Marietjie.

[Amanda]

Dear Margie
I am here if you need me an right now i am blessed that i can have the treatments an not surgeries an will be ok an monitored!
I will help you in any way i can. I am seeing my Onc for my pre Op on monday an i will discuss this situation with him
I am SURE there is a sarcoma specialist in SA an i will find out who if he knows an ask him to please help me in reaching out.

After my father passed on Christmas i was left with my hands not as full i was caring for him.
i am loved have a very supportive family an i feel almost bored an feel like i am accomplishing nothing really or being productive.

I am focusing on myself now a lot an thank you hun xox But if you need me i am here 100%

We are a small group of awesome people that have heartbreakingly been burdened an emotionally destroyed by ASPS.. But, we are a family.
My one wish was that we would all meet one day hehe Or that i would be wealthy enough to get Tok an others in treatments..
Seeing as i am not working thats not goping to happen *sigh*

So let me know and let Tok know he has someone that will stand up for him an help fight when ever he needs me!
I am here for you also while you venture into the hospital via phone an i pray they listen

Lots of love!

[Bonni Hess]

Dear Marietjie,
I am sorry that I have not been able to respond to your recent posts but I have been away from the computer for the past few weeks and am just now getting a chance to slowly try to catch up with reading everyone's posts. I Hope that this finds Tok and your family having been able to obtain better information and clarification regarding the doctor's questionable recommendation for Tok to undergo radiation to the infection at his primary tumor site. I share Olga's concerns and questions about Tok having potentially damaging and dangerous radiation to an already infected area, and feel that clear communication with the doctor is essential. In the meantime, I Hope that Tok is receiving much needed pain relief and appropriate medical care. I will be anxiously awaiting your next update and holding Tok, you, and your family very close in heart and thought.
With special concern and deepest caring, healing wishes for Tok, warm friendship, and continued Hope,
Bonni

[MarietjievdMerwe]

Dear Bonni,
Thanks again for your good wishes and kind words.
Tok received the first of 5 sessions of radiation on Monday. Somebody at the hospital was kind enough to organize a room at a lodge opposite the hospital. We are very greatful for this. This means he does not have to travel to and from the hospital on a daily basis.
I had a text from him just now saying he is doing ok, but still has a lot of pain.
I will speak to him over the weekend and will update the board as soon as possible.
Kind regards.
Marietjie.

[D.ap]

Marietjie

Thanks for the update. That was really a God send the housing arrangements.
Hope to hear more good news when you are able


Much love
Debbie

[Amanda]

Hello
I am so glad no traveling for him an he can stay put!
I am still confused why the radiation but i am sure he wouldn't allow them to do something stupid to him!
How is the wound?
Wow do i know how he feels with this dam pain!!!
Are they going to give him also injections?

I cant believe you were thinking of me today when you were all still going thru this!
Thank you!
*huge hug*