Tok from South Africa - Dx around 2004

[MarietjievdMerwe]

Olga,
It is acutally wonderful to hear of patients responding well to conventional treatment. This is such a uncertain time in the patients' as well as their loved ones' lives. Success stories are always welcome, irrespectable of which method of treatment they use. As long as the results are the same.

In terms of side-effects, are there many differences between the conventional and clinical trial treatments? Could you perhaps inform me on this?
Regards.
Marietjie.

[Olga]

The traditional conventional chemotherapy is a cytotoxic chemotherapy - the anticancer drugs that kill fast dividing cells including cancer cells. It is given in the MTD - maximum tolerated dose found by the previous clinical trials. It is usually given in 6 cycles of 28-days. Chemotherapy may damage cancer cells/kill them/or have no effect. ASPS was often found unresponsive to traditional chemotherapy as these cells are slowly growing and the tumors are often found to have very irregular blood supply so there are often areas that get no chemo. There are few chemotherapy regimens that are used in sarcomas in general - MAID or AIM is the first line, GemTax is the second and vinca alcaloids (vincristine or vinblastine) are th third. Clinical trials of the cytotoxic chemotherapy in ASPS only have not been ever completed and the single cases produce inconclusive result.
Then there are newer class of drugs called targeted chemotherapy. It is expected that they block the receptors on the tumors or tumor's blood supply (they called antiangiogenetic drugs) and interfere with the growth or chock it down. Most of these drugs are currently studied in some clinical trials - Phase 1 to 3 they have to pass. Before the target for the approval was the improved overall survival (OS), but recently it was decided that when there are no other treatment options exist, the progression free survival (PFS) is also good enough for the drugs to be approved, although the patient often sees an increased speed of growth after a prolonged period of the stability and there is no gain in OS even with increased PFS. They decided that it will improve the quality of life of the patients so some drugs are approved with only PFS improved.
In ASPS we currently have TKI (Tyrosine kinase inhibitors) targeted therapy drugs found to be active. It means that the tumors may shrink on these drugs at least temporarily. Some of TKI are approved for other diseases and can be prescribed for ASPS off label by the oncologist that has a sound rationale for it - for example, he is aware of the single cases it was beneficial for other patients. There is a clinical trial for TKI cediranib that is specifically open for ASPS at the NCI in Bethesda and it accepts international patients free of charge as well if they are able to travel. Other drugs of this TKI class are approved for other diseases - like sunitinib or pazopanib or sorafenib - and can be prescribed by the oncologist in any country if these drugs are available there.
The side effects are different for every class of chemotherapy drugs that are used, there are similarity inside of the class of drugs. Also there is a big variability between the patients in side effects severity.

[Bonni Hess]

Dear Marietjie,
It was so very good to hear from you again and i am very appreciative of your thoughtful update since I become increasingly concerned when people are out of touch for too long. I am so sorry that Tok had such a frightening episode with his low blood count requiring him to be given two units of blood, but am grateful that he is now back Home, doing well, and in good spirits . My continued special thoughts and very best wishes are with him, you, and your family, and I am holding very tight to Hope that Tok will continue to have a successful response to his chemo and that his next scans will bring good news of stable disease and tumor shrinkage. In the meantime, please take care Marietjie and keep in touch as you are able.
With special hugs, deepest caring, healing wishes for Tok, and continued Hope,
Bonni

[MarietjievdMerwe]

Hi Everybody!
It's been a almost a month again. Time flies. Tok is at home having had round six of chemo. Dr Cohen is very happy with his recovery and his blood counts are ok, under the circumstances.
I am just a bit concerned with his all over wellbeing. He seemed a bit depressed and the question now is if this is normal? He wasn't quite himself before being admitted for his last round of chemo and this went on for the remainder of the time he spent in hospital and the two days with us at home.

His wife, Carreen also expressed her concern when he got home. At the moment he is doing his normal day to day chores and also attending to his business, but i am still a bit worried. Has anyone experienced this or is this just him being a bit under the weather?

We have to see dr Cohen again in three month's time (November) when he will be doing a CT scan. Till then we will just keep up Hope and Faith that all will be well for the time being.

Bonni, how is Brittany doing? I am concerned about the cataracts. Any news again?
Please give Brittany a very warm hug from Tok and myself.

Keep well and very kind regards from us in sunny South Africa.
Marietjie.

[Ivan]

Now that he's off chemo, is he able to exercise? Perhaps it can make him feel better about himself, and also aid his recovery

[Olga]

Marietjie, from other people's testimonies I know that last rounds of the chemotherapy are very toxic as the toxicity builds up. He was probably dreading the last round and it was for a reason. He should have more fluids now to get his system flushed out. Also there is now a question:"and now what". It all depends on the scan results.

[MarietjievdMerwe]

Dear Olga and Ivan,
Thank you for your prompt response. Ivan, excercising is unfortunately a very foreign word to my dear brother. He walks to and from work everyday - about 500m to work. That is how far his excercising goes. I got him to start excercising the arm. He has about 20% use of his hand due to a cast he wore for the past eight months. The physiotherapist showed him some excercises a while ago, but needless to say, nothing came of it. I think that he is only now realising that it is crutial for him to get back the use of his hand.

Olga, the "what now" part is the worst. He drinks a lot of fluids but had a blood test done yesterday and as you can imagine, with not very good results again. No platelet count whatsoever. He is back on Neupogen injections as well as antibiotics for the next 5 days. This usually ends in good bloodresults within a few days. The last three rounds of chemo affected him very badly, but we were warned that this might happen. Someone also advised him to go fishing and be in the sun, with sunscreen and a hat of course! Especially in the African sun. This he might do over the weekend. Maybe that will also give him a bit of a boost.
Kind regards.
Marietjie.

[Bonni Hess]

Dear Marietjie,
I am so appreciative of your thoughtful update about Tok, and for your kind and caring concern about Brittany along with yours and Tok's long distance warm hugs for her .
I am so sorry that Tok seems to be struggling with depression, but this is very understandable with all that he is going through. This disease and the treatments take a huge physical and emotional toll. When a person is not feeling well physically, it is difficult to feel upbeat and energetic, but yet it is so very important to try to keep a positive attitude to help stimulate the immune system and keep it strong. I have personally always felt that there is a strong body and mind connection, and being depressed or negative seems to weaken the immune system and make it more difficult to fight disease. Have you or Tok's wife discussed your concerns with Tok's oncologist? Perhaps an anti-depressant could be prescribed. I agree with Ivan that some type of physical activity would probably help to take Tok's mind off of his problems, make him feel better about himself, and lift his spirits, but yet it is difficult to do those things when you don't feel good physically. It is certainly a real Catch 22, but just getting outside in the fresh air works wonders for one's attitude, and going fishing sounds like a wonderful idea Also, Hopefully knowing that he has now completed his final round of chemo will give him a light at the end of the tunnel and relief that he will Hopefully not have to suffer through anymore chemo treatments.
My continued most special thoughts and very best wishes are with Tok for a very successful response to his chemo, and I will be anxiously awaiting the results of his scans in November. Please give him and yourself special hugs from me, take care, and keep in touch as you are able.
With deepest caring, healing wishes for Tok, warm friendship, and continued Hope,
Bonni

[MarietjievdMerwe]

Goodmorning everybody,

A quick update on Tok is that he has been admitted to hospital on Monday and received yet again 3 units of blood as well as platelets. He went home yesterday and according to his wife, Carreen, he is looking much better with rosy cheeks and not feeling so tired anymore.
This was a very difficult time for us as this made us feel so helpless and frustrated, not being able to do anything for him.

We are very thankful that he made such good progress and is feeling better. We will be Hoping and praying for a speedy recovery.
Regards.
Marietjie.

[Bonni Hess]

Dear Marietjie,
I am so sorry and saddened to hear about Tok's hospitalization, but am very grateful that he is now feeling better and has been released to go Home where he will Hopefully have a very speedy recovery and quickly regain his strength and energy. I assume that his low blood counts are related to the harsh side effects of his chemo rather than caused by his ASPS, and am Hopeful that he will now remain stable.
I know far too well what a very helpless feeling and how anguishing it is when you are unable to do something to help relieve your loved one's pain and suffering, but just know that your love and support is very important and emotionally strengthening to him. Please give Tok a gentle hug from me, know that my most caring thoughts and very best wishes are with him, and keep the Board updated as you are able.
Heart to heart with deepest caring, healing wishes for dear Tok, warm friendship, and continued Hope,
Bonni

[Bonni Hess]

Dear Marietjie,
It has been about a month and a half since you last posted and I Hope that this finds Tok doing and feeling well. I know that he has his CT scans scheduled for sometime this month, and I just wanted to let you know that my very best wishes and most positive thoughts will be with him and all of your family for very good scan results which show that he is having a very successful response to his chemo and that it is working to stablize his disease and shrink and destroy his tumors. I will be anxiously awaiting your next update when your time and the situation allow. In the meantime, please take care, give Tok and yourself special hugs from me, and keep in touch with the Board as you are able.
With special caring thoughts, healing wishes for Tok, and continued Hope,
Bonni

[MarietjievdMerwe]

Dear Bonni,

A wonderful surprise to hear from you. It's been such a busy time for us as we are another little granddaughter richer in the meantime! I am so sorry for not letting you know that everything is just fine with Tok. We are so greatful for this. His hair started growing and he is overall looking so good.

He will see dr Cohen on Monday 19 November and will also be having a CT as well. I do promise do let you know the results immediately.

Thank you Bonni, for your always so welcome good wishes. This means so much to us and i will definitely convey this to Tok.

Special hugs to Brittany as well. She is always on my mind, each and every day.

Keep well Bonni.

Very best wishes and groete.
Marietjie.

[Bonni Hess]

Dear Marietjie,
Thank you so much for your very thoughtful and encouraging update on Tok, and for your special hugs and caring thoughts for Brittany. It is so good to hear that Tok is doing well and looking good with his hair now re-growing . CONGRATULATIONS!! on your new little granddaughter It is always good to hear good news in the midst of all of the heartache that this insidious disease brings to the Lives of ASPS patients and thier families.
I will be holding Tok and all of your family especially close in my heart and thoughts on the 19th, sending my most positive energy and very best wishes for very good scan results, and anxiously awaiting your update when your time allows. In the meantime, enjoy each precious moment with your new granddaughter, and know how very happy I am for you and your family.
With special hugs, caring thoughts, healing wishes for Tok, warm friendship, and continued Hope,
Bonni

[MarietjievdMerwe]

Good morning all ASPS friends,

News on brother Tok is that he had his CT yesterday and it is all GOOD NEWS!!!

Of the 8 mets left in the lungs the scan showed the following: Five mets not demonstratable, not measurable, vague not measurable, not visible x2. The other three are scar tissue, previously 5mm and 4mm and now both are more or less 2mm each!

Cavity right mid lobe has almost completely resolved.

Dr Cohen only wants to see him in three month's time and doesn't consider a CT but just a chest x-ray.

He is looking so good with hair as well as beard growing again. Not too sure about the beard though...

Our family are just so Thankful for this Blessing and are over the moon with joy, as you can imagine.

I will keep in touch.

Kind regards to all.
Marietjie.

[Amanda]

Hello
Wonderful news!I am so happy hearing this!