Tok from South Africa - Dx around 2004

[D.ap]

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.

Hi Marietjie

I hope today finds Tok's pain levels down .
I found this article from the national cancer institute on radiation
It tells all from why radiation to what to expect , what to look for and how to stay healthy after wards.
Hope Tok and yourself are doing well

http://www.cancer.gov/cancertopics/copi ... -you/page2


Love,
Debbie

[MarietjievdMerwe]

Dear Debbie,
Thank you for the article! Tok received radiation just to relieve his pain.
We visited him on the 2nd of August and seems to be very depressed or just "down". Myself, our sister and one of our brothers visited for the day. He enjoyed this very much and even got out of bed.
Unfortunately the oncologist told him that his prognosis was not good at all.
He has to be back at the hospital on the 2nd of September. Maybe just to have a look at the tumor and to decide which route to follow from here?
I'm not sure and neither is he. I suspect he is a bit overwhelmed at the moment.
He however said that the hospital staff treated him with great care and empathy and cleaned his wound everyday.
Take care.
Love.
Marietjie.

[Amanda]

Hello
Thank you so much for posting this! I feel better reading this!
You an Tok have been on my mind... I am so glad he is receiving well over due care Depression is normal with pain but needs to be watched closely.
Though i don't advise his wounds or radiation areas being the sun i do think getting him in a wheelchair and getting him outside will make a larger difference than usually people expect

Sending love an hugs!

[D.ap]

Marietjie

Hi. Were the doctors able to see the tumor through all the swelling?
Amanda's idea of him getting out in a wheel chair is an excellent idea!
I hope he gets more answers soon to ease his mind. Not knowing sure leads our imagination on a wild ride!

Love
Debbie

[MarietjievdMerwe]

Dear Debbie and Amanda,

Tok is able to walk and with our weather as gorgeous as it is at the moment, he likes to go outside when somebody is with him.

Debbie, just spoke to him again and according to him the body is getting rid of the "dead tumor". How on earth am I going to describe this to you?

Debbie, it is an open tumor and apparently the goofball size tumor has shrunk since Tok received radiation. According to the dr whom he has seen yesterday, it is going to "fall off". Hope this does make sense?

He also seems to be in better spirits today.
Oh, and he received antibiotics again as well as the dr is a bit worried about infection. Hope this is just as a precaution.

[D.ap]

Marietjie

It sounds ulcerated?
http://www.cancerresearchuk.org/cancer- ... lly/ulcer/
Not very fun..

Love
Debbie

[MarietjievdMerwe]

Debbie,
This is EXACTLY what is happening with his arm. And to a great extend this is the treatment that he received.
Thank you for sharing the info. I do appreciate this so much.
Love.
Marietjie.

[D.ap]

You are soo welcome my dear , dear friend .
Lots of prayers coming your way!

Much love
Debbie

[Olga]

That explains the oncologist ordering the radiation to this spot - what we assumed was the wound turned out to be a very obvious visible recurrence, so the radiation was ordered to treat it. I would advocate the resection of it following the shrinkage but probably there is also a growth in the previously treated lung mets that were responding to the chemotherapy for awhile so that makes them reluctant. Lets hope that the radiation is more effective in this case than usually.

[D.ap]

Putting 2 plus 2 together
Had a memory of my GM having bed sores?

http://en.m.wikipedia.org/wiki/Bedsore

Tok's wounds being treated is what made me think of ulcers
Whatever it takes to get there from here.
Deb

[MarietjievdMerwe]

Hi Everyone,

Quick update on Tok: he is still in a trementous amount of pain, but will see the orthopedic surgeon on Wednesday regarding the possible amputation of his arm. I managed to get hold of his oncologist through CANSA. This happened three weeks ago.
Although he told me that Tok's case was " a matter of urgency", nothing had been done in his hometown. He couldn't get the dr in his hometown to contact the orthopedic surgeon in the city.
Very very frustrating.
I will update the board as soon as I heard from Tok on Wednesday.
Kind regards.
Marietjie.

[D.ap]

Marietjie
Glad things are going forward
Thanks so much for the update
Love
Debbie

[Bonni Hess]

Dear Marietjie,
I am so sorry and saddened about Tok's continued and unresolved arm pain, but am grateful that things FINALLY!! seem to be moving forward with addressing the situation. Hopefully the doctor will be able to treat Tok's arm and resolve the pain without amputation unless it is determined that amputation is the only way to prevent the ASPS from continuing to grow and spread in his arm. I do not understand the complacency and inaction of Tok's doctor(s) in addressing and treating Tok's arm pain and the tumor especially since it has been determined that it is "a matter of urgency", and I share your immense frustration and anger. Please know that Tok, you, and your family are being held very close in my heart and most caring thoughts, and keep the Board updated as you are able.
With shared deepest caring, frustration, healing wishes for Tok, warm friendship, and continued Hope,
Bonni

[Amanda]

Dear marg <3
My arm pain was asps an I was operated on two days after my brain surgery
Bone cancer pain is the devil an I use ice an Advil to help it's not going to stop it but the anti inflammatory seems to help me
I actually spoke with my drs about this fight
An though they couldn't define how to help they were very visually upset
he is my brother also thru asps and I will again talk to them an try to find a doctors traveling group
It's a long shot but trying is still worth it

I send love and I send prayers that intervention and pain is controlled

Love an light dear

[MarietjievdMerwe]

Hi Everybody,

Quick update on Tok: he was admitted to hospital yesterday afternoon. I spoke to him this morning and he sounded in good spirits (giving his circumstances). He saw the orthopedic surgeon yesterday who ordered an EKG as well. Also saw the anesthetist.

He is not allowed to have anything to eat and may only take his medication with as little as possible water, which means he is on the their list for today. We hope...

The orthopedic surgeon discussed the amputation with him and the good news is that it is not necessary to amputate in the shoulder, but still leave a stump (by lack of a better description). Amputation in the shoulder would be a far greater surgery and this is of great relief to the family.

He will be in hospital for a week.

Will update the board again the moment I am able.

Kind regards.
Marietjie.