MarietjievdMerwe wrote:Ivan,
The last CT showed a"few", but the oncologist didn't say how many there were. These are going to be his "markers" till the next CT, which will only be after the 3rd chemo. I only remembered the thoracic surgeon talking about the "grains of sand" that she felt but couldn't remove without causing too much damage to the lungs. As far as i know there is nobody in SA doing the laser treatment (?), but i will make sure to find out about all the treatment available. I also contacted our local CANSA, but they are very slow to react, which is so frustrating! Did you receive the MAID treatment?
Find out how many exactly. Ablation are not laser surgery, and they are fairly common and probably available in South Africa.
No, I never did any chemo. Most people believe it's not effective, although there are a few cases where it may have been effective in combination with surgery.
Ivan,
I am so slow to react these days! Sorry. I will most certainly ask the oncologist, Dr Cohen about Sunitinib and Cediranib. I can't seem to find anyting about any clinical trials in South Africa, which is again very very frustrating!! I will keep doing my homework and let you know as soon as I find something.
I also just remembered the thoracic surgeon calling the removal of the mets "cherry picking". Do I understand correctly that the mets in his case are on the surface and not "inside" his lungs????
Dear Marietjie,
Is Tok being treated by a Sarcoma specialist? If not, it is extremely important that he try to find one because most general oncologists have very little if any knowledge about, and experience with, ASPS. Many onocologists naiively prescribe MAID because it is a traditional chemo used to treat many types of cancer and also to treat some types of Sarcoma, but as I and Ivan have told you, it has unfortunately not proven to be very successful in treating ASPS. When Brittany was first diagnosed ten and a half years ago and the standard Ifosfomide/Adriamyacin chemo was strongly recommended for her by her orthopedic oncologist, her very astute Sarcoma oncologist told us that if it was his daughter he would not put her through the harsh regimen because there was less than 1% chance that the chemo would work to stabilize the progression of her ASPS, and that it could actually cause her to develop other types of cancer or that it could kill her because of its high toxicity. Again, I Hope that this is not the case with Tok and I Hope that the MAID is successful for him, but you need to also be aware of the statistical evidence regarding MAID treatment for ASPS. Cediranib, to my knowledge, is not available in Clinical Trial in South Africa, but Sunitinib should be available as a prescribed drug since it is now out of Clinical Trial and FDA approved. Regarding Tok's thoracic surgeon referring to removal of the lung mets as "cherry picking", she probably meant that she was only able to remove the largest mets but that there are still many smaller ones which cannot be surgically removed without destroying too much lung tissue. If this is the case, laser resection like that which is done by Dr. Rolle in Germany would probably be the best treatment approach, but if that is not a viable option, then as Ivan has recommended, perhaps Cryoablation to shrink/destroy
the largest most concerning mets could be done with the Hope that a systemic treatment like the MAID or Sunitinib could shrink/destroy the smaller ones.
You mentioned that Tok has had two CT's and an MRI. If the MRI was not done of his brain, this is something which should be done as soon as possible to ensure that there are no brain mets since ASPS is known to metastasize to the brain. I know that you are being inundated with a lot of information which must be very overwhelming, but it is critically important information for you and Tok to have for this challenging battle with this extremely rare disease. Please give Tok my best wishes, take care Marietjie, and keep in touch with this Board as you are able.
With special caring thoughts, healing wishes for Tok, and continued Hope,
Bonni
Bonni,
I can't even begin to say thank you for all the info over the past few days! I've got a little book and is writing everything down. As i have said it is a bit of a struggle to get someone from CANSA to contact me regarding specialists etc, but i will get someone to talk to me. Thank you for your support and all the info on Brittany as well. This means a huge lot to me and Tok.
News on Tok is that he is eating and drinking again and is sleeping well. I am almost looking forward to seeing the oncologist is two weeks' time. He has got a lot of answers to give. Without you guys we would never have known what tipe of questions to ask.
There still is Hope, i know.
Me again. Had to laugh at myself. Had to look up what cryoablation and ablation means! Would just like to say that English is only my second language. Bonni, i am not sure if dr Cohen is a sarcoma specialist but i will find out. If it means that i have to find another specialist, i will do it. And thanks for clearing the "cherry picking". Ivan, you and Brittany are truly an inspiration to us as well as our loved ones.
Dear Marietjie,
Thank you for your kind words and for the encouraging news on Tok being able to eat and drink again and to sleep well which is so very important in helping to strengthen the immune system to better fight this challenging disease.
I'm glad that you were able to laugh , but you actually have a very good command of the English language, and certainly would not be expected to know what Cryoablation means as it was a term that even Brittany's oncologist was not familar with seven years ago when we first raised this as a possibility for a less invasive treatment for Brittany's largest and most concerning lung mets which couldn't be safely surgically removed due to their dangerous location.
I am more than happy to be able to share with you and other ASPS Community members the hard earned knowledge which we have learned from our difficult ten and half year ASPS journey. Shared researched and anecdotal treatment information is truly one of our most powerful weapons because ASPS is so extremely rare and little known by even most oncologists, and if everyone in the ASPS Community would share their information and actively participate on this Board, everyone could benefit. I strongly believe that by everyone sharing information and working together, we CAN and we WILL win this battle.
Reaching out across the miles with deepest caring, special hugs, healing wishes for Tok, and continued Hope,
Bonni
Good morning,
Would just like to let you know that there are no sarcoma specialists in SA, a country with almost 50million people! I emailed a dr in Cape Town who is busy with clinical trials, but haven't received a reply yet. As i have said, it is very frustrating as we are supposed to be a developed country and yet it looks like nobody cares about cancer patiënts!
Do appreciate what you guys have, as this is going to be an uphill battle for us.
Regards.
Hi there,
Would just like to say that i eventually got a response from the dr doing research and clinical trials. There are NO clinical trials OR research done for ASPS in South Africa as it is too rare!!
We have hit the brick wall. She also told me that the MAID treatment is the only way oncologists in SA treat ASPS.
Forgive me if i feel that patients with ASPS are not being treated as they should. ASPS is al reality and cannot be wished away or ignored because it is so rare!
I will give you and update again during next week when Tok will receive his second chemo session.
Please Hope and pray with me.
Blessings to all.
Marietjie.
Marietjie, clinical trials for ASPS are very rare everywhere. There are some targeted therapy drugs that are approved for other diseases but are used in ASPS off label based on the single case/small groups reports from the oncologists around the globe. One of them - sunitinib (sutent is another name of this drug)- might be avail. in South Africa but you will have to educate the oncologist - print out the supportive articles, there is an info on this board here: http://www.cureasps.org/forum/viewforum.php?f=52
and you can find more on the Pubmed.gov - it is a best source for the official publications that oncologists accept.
But you should know that usually any of them - TKI drugs, traditional chemotherapy - are only temporary effective as the tumor develops resistance, so they should be reserved for the cases when there is a def. progression.
Dear Marietjie,
I am so sorry for the lack of ASPS treatment options available in South Africa, but as Olga has said, this is not a situation unique to South Africa due to the rarity of ASPS. If there is a promising new treatment in Clinical Trial in Soutn Africa for other more common types of cancer such as renal cell carcinoma or melanoma which seem to have some biological similarities to ASPS, then Tok may be able to request a Compassionate Use Exception from the pharmaceutical company to be included in the Trial. Also, as Olga has said, Tok may be able to obtain a prescription for Sunitinib (Sutent) from his oncologist based on documented results for some ASPS patients who experienced stabilization of their disease and some tumor shrinkage while taking Sutent. However, once again as Olga has said, currently available systemic treatments such as traditional chemo like Tok is currently receiving or targeted Tyrosine Kinase Inhibitors like Sutent should be reserved for when there is active disease progression because of the risk of developed resistance to the medication followed by rapid rebound and aggressive disease progression. Hopefully someday very soon a much more effective and sustained systemic treatment and cure will be found, but at this time, the best approach is vigilant scanning, and resection, ablation, or radiosurgery of new mets at the smallest most treatable size if the mets are located in a treatable location of the body. If mets are located in a dangerous, but utreatable area such as was Brittany's unresectable tumor in the head of her pancreas, and/or if the disease is rapidly progressing with widely disseminated and mulitple tumors as Brittany's was prior to beginning her Cediranib treatment three years ago, then a systemic treatment of some type to try to stabilize the disease progression and shrink/destroy the tumors is the only option. My most positive thoughts and very best wishes continue to be with Tok and you, and I will be anxiously awaiting your next update. Take care.
With deepest caring, healing wishes for Tok, and continued Hope,
Bonni
Dear Bonni,
Thank you for your encouraging words! I do appreciate this so very much. We will discuss everything with dr Cohen and we'll take it again from there. It is still very sad that so little is actually been done for ASPS patients. I have learned so much from you, Olga and Ivan over these past weeks!
We will not lose Hope and Faith. I trust Brittany is ok, under the circumstances?
Kind regards.
Marietjie.
Dear Marietjie,
Thank you for your kind words. When you meet with Dr. Cohen, you might want to discuss the possibility of Votrient ( Pazopanib) treatment for Tok as it was just recently approved by the FDA for treatment of soft tissue Sarcomas, so it is now available as a prescribed drug rather than just in Clinical Trial. I posted the link to the article about Votrient's FDA approval in the Systemic Treatment topic and Anti-angiogenic Treatment sub-topic section on this Board. Votrient is an anti-angiogenic tyrosine kinase inhibitor which has shown some success in treating ASPS. It is in the same class of drugs as Suntinib and Cediranib. I Hope that this information is helpful to you, and that Votrient will be considered by Dr. Cohen as a possible future treatment option for Tok in the event that the MAID is unsuccessful in stabilizing the progression of his disease and shrinking his tumors. Take care, give my best wishes to Tok, and keep in touch with the Board as you are able.
With special caring thoughts, healing wishes for Tok, and continued Hope,
Bonni
Dear Bonni!
So good to hear from you. I will discuss this with dr Cohen and will let you know, thank you for all the info. I do appreciate this so much. Tok will be seeing dr Cohen on Wednesday morning and my husband and I will stay with him for the rest of the day. I will let you know as soon as we get home from hospital. Thank you again for all the info as there is not much info on South African websites!
Unfortunately news is that his hair is also starting to fall out. It is just so sad, but as you said, we will keep Hope and Faith.
Thank you for all your kind wishes, i will convey your kindness to Tok. I know he will also appreciate this.
Kind regards.
Marietjie.
Without you guys we would never have known what tipe of questions to ask.
ASPS is al reality and cannot be wished away or ignored because it is so rare!