LCMA - Dx 2007

[Amanda]

Hello LCMA
When i was first diagnosed and found out i had ASPS in my leg lungs and rib a cancer survivor asked me this question...

How do you feel right now?

*I rolled my eyes at her* Physically I said GREAT!

She said hold on to that and remember that because if you feel great that is important! It is all that matters!
In some ways it was hard for me to understand what she meant. I take it as we all have today and this moment and no one knows what tomorrow will bring wether we have cancer or not... Live in the minute :/ kinda hard but possible...
I try and live that way now but i am still scarred at every turn in this situation and it is normal to be...

Another person who sadly lost her ten year fight to ovarian cancer a few months ago my step mother said
"I just put the fear in the back of my mind instead of the front.."
"don't live cancer by talking about it and reading about it all the time. You are not cancer"

I am getting scanned also in a few weeks it is normal to feel fear and be questioning about treatments or surgery's that have been used to help us and there effects.

Your cancer is not out of control and growing in areas that are non operable from what i remember and your tumor load is not heavy.. these are very good things to hold onto. these are reasons to take a breath ...

To whom ever your friend is she is not alone in her situation nor in this frightening journey! I am very glad she has you as a friend to talk to and though it is sad she isn't posting here we all have are own ways of dealing with ASPS and its treatments and the forums are just not hers

I have never met an Onc that has given up so far on any patient and if yours does let me know i have a few that are not quitters and will do what ever they can with hope of a cure or control of this disease... I would be shocked to see a Onc give up after seeing the Ced trial and the new drugs coming out that are like Ced and how wonderful some of are ASPS family are doing. Look how Brittany is


Isn't it also possible soon to try your old medication out again ?
Your cancer can in the morning also go into remission for no reason for years!
This cancer is very slow growing!
You are young and strong and positive and feel good today!
I am sure you can also add to this list

Read the thread of the survivors club in the personal updates area it always makes me feel better!

*hugs*

[Bonni Hess]

Dear LCMA,
I am so sorry that you are having increasing fears about your Nexavar (Sorafenib) treatment not working, but scanxiety is very normal and common for everyone involved with fighting this disease because we all know that it can be very unpredictable. However, Olga, Amanda, and Ivan have all offered some very wise and excellent insights which will Hopefully help to comfort you, ease your fears, and put your concerns in perspective. I am sorry too to hear about your friend with ASPS who is not doing well. I really don't understand hers or any other ASPS patient's reluctance/refusal to avail themselves of the invaluable and vitally important shared information, international anecdotal experiences, and strengthening support which is offered on this Board as often there is information which even the oncologists are not aware of such as Cediranib which Brittany's primary oncologist had not even heard of until we told her about it after reading English patient Paul Mavers' thoughtful treatment update on the Discussion Board. I Hope that your friend understands that she can just visit the Board and doesn't have to participate on it if she doesn't want to, or if she wants to share her situation and reach out for information she can do it anonymously. ASPS is such an extremely rare disease, that trying to fight it alone without an information and support resource is extremely difficult. Knowledge is power, and shared information and anecdotal experiences is one of the strongest weapons that we have. With this disease, we all need every possible weapon.
My most positive thoughts and very best wishes will be with you during your upcoming December 7th scans, and I will be anxiously awaiting your update on the scan results. In the meantime, please take care dear LCMA, stay strong, hold tight to Hope, and know that all of us on this Board are here for you.
Reaching out across the miles to embrace you with warm hugs, special caring thoughts, and continued Hope,
Bonni

[Bonni Hess]

Dear LCMA,
Thank you for taking the time to update the Board in the midst of your busy Life and activities. I am so happy to hear that your Nexavar check-up went so well, and I Hope that you can now relax and enjoy a most beautiful and joyous Holiday season shared together with family and friends. I know that you will be having the inevitable scanxiety as your January 3rd scan date approaches, but in the meantime I Hope that you will be able to just immerse yourself and your mind in all of the Holiday festivities, and then move forward into a wonderful New Year brightened with continued Hope for the miracle of healing and renewed good health. I am so appreciative of your sharing on your extremely well written and insightful personal blog about the "I'm Too Young forThis! Cancer Foundation" and the "Stupid Cancer Book Project" which might be of value and of interest to the other young ASPS patients on this Board if you would be willing to share the links for them in your next Board entry. In the meantime, please take care, stay positive and strong, have a most happy and healthy Holiday season, and keep in touch as you are able.
With warm hugs, deepest caring, Happy Holiday best wishes, and continued Hope,
Bonni

[MANIA]

LCMA
It has to be very nice to read all of these words of support You got after You wrote you were scared. I thought that it's good you were so honest and wrote about Your feelings. Paula and I will be thinking of You since she has her scans on the same day Take care girl

[MANIA]

Good news! hurray!
take good care LCMA

[Bonni Hess]

Dear LCMA,
What wonderful and encouraging news to begin the New Year with! I share your happiness and Hope, and will be anxiously awaiting your next update. Take care and enjoy celebrating your good results!
With happy hugs, special caring thoughts, and continued Hope,
Bonni

[Amanda]

What a great way to start the new years!! YAY!!!

[Olga]

LCMA - that is great that you get this option, it is so often when people would just say that they have cancer when in fact they have sarcoma, there were few cases when sarcoma patients were discussed on the TV and sarcoma was not even mentioned!

[Olga]

LCMA - about the brain scans. We do not ask our oncologist if the regular brain scans are necessary - we just tell to our oncologist that in our opinion they ARE necessary based on the published literature - and she always agrees (once a year for Ivan and not the CT scans but only MRI), this year she even said - I was checking on you guys if you would forget to remind me that his yearly brain MRI is coming:(
There are articles that prove that people with known lung mets ASPS have to be checked for the possible brain mets development.

[Bonni Hess]

Dear LCMA,
It is so good to hear from you . I am glad that your last week's clinic visit went well, that your blood work looks good, and that you are tolerating the Nexavar well with only mimimum side effects. I am so sorry for your continued and chronic severe post surgery abdominal pain issues, which Brittany also heartbreakingly suffers from her post spinal surgery which was done almost three years ago. The only thing that provides her any pain relief is her oral Fetanyl pain lollipop, and even then it only helps to take the edge off and make the pain tolerable. We have tried several pain specialists unfortunately with no success, so will be anxious to hear if your pain specialist is able to provide any new effective pain medications or treatments for you.
I strongly disagree and question the inexplicable (and I really feel inexcusable) advice that you received from two different sarcoma "specialists?....." regarding the importance/necessity of regular brain MRI's when you have an ASPS diagnosis. ASPS is known to metastasize to the brain, and in many ASPS patients it devastatingly does metastasize to the brain! When Brittany was first diagnosed with ASPS in Seattle and we called MD Anderson to confer with Dr. Benjamin who is a highly respected national sarcoma specialist and expert at MD Anderson, he was adamant in his advice that Brittany have a brain MRI as soon as possible in the Seattle hospital where she had just undergone surgery to remove her primary tumor in her thigh. Thankfully she did not have any brain mets at that time, but three years later they tragically appeared, and again a couple of years later. It is important to note that at the time of Brittany's first brain mets diagnosis, she had been having stable chest CT scans with very minimal if any increased growth of her lung mets, so stable scans in one area of the body do not always mean there are no new tumors in another area. As with everything else with this unpredicatable and insidious disease, vigilant scanning and treatment is critical in order to battle and try to manage the disease. The only way to find brain mets at their smallest and most treatable size is through regular brain MRI's, and not brain CT's. If the patient waits until the brain mets become symptomatic with pressure headache pain, extremity numbness, loss of balance, etc., it is often and usually too late for the brain met to be resected or successfully treated and destroyed with radiosurgery. A patient with another type of Sarcoma who I had closely followed and who tragically recently lost his courageous battle, had complained of headache pain which his oncologists at Memorial Sloan Kettering inexcusably dismissed as side effects from his chemo, until a brain scan was finally done and brain mets were found! Our personal experience with Brittany's brain mets, our active networking with other ASPS patients, and our extensive research have confirmed to us that regular brain scans are essential for ASPS patients, and I would be glad to debate this with your two sarcoma "specialists" who I strongly feel are providing erroneous and dangerous advice regarding this critically important issue.
My most positive thoughts and very best wishes will be with you for very good results from your next month's Nexavar status scans. In the meantime, I Hope that you find an effective treatment for your chronic abdominal pain, and that you will be able to enjoy a most beautiful and happy Springtime. Take care dear LCMA and keep in touch with the Board as you are able.
With special caring thoughts, healing wishes, and continued Hope,
Bonni

[Olga]

LCMA - I am sorry to hear that you are not responding to sorafenib. I never really looked into their targeting differences but from the efficacy point of view I do not see many responders to it in other sarcomas as well so may be the drug is less effective overall (at least from ASPS). I do not know if you have seen that we now have few people on dasatinib clinical trial and they seem to be responding, I've also seen that pazopanib seems to be a stronger TKI (as is cediranib and you still have this option open, right?).
About the surgery. Ivan, Tom, Sree, Brittany, other people had their lung mets grossly resected or at least some of them (biggest, more aggressively growing, located in a place that most likely be dangerous sooner) ablated. We realize that not everyone can finance traveling to Dr.Rolle to increase the chances to resect them at the max number without the loss of the lung tissue to keep the quality of life. We know someone who decided to resect the macro mets leaving the small tiny mets behind in attempt to buy a time to be able waiting for the cure. It worked so far as the small mets stayed stable for few years in that patient's lungs with no treatment. Our own strategy was to try to resect as many mets as possible (hence Dr.Rolle has done 4 lung surgeries for Ivan...) to try to bring them to a number that is manageable by the other means - local ablations for example. So far it worked as after the last surgery 2 years ago Ivan had 1met progression a year, with the progession like that he did not need a surgery so the last year he had 1 cryoablation session done by Dr.Littrup and now we are preparing to have 1 more by the local interventional radiologist that we now have in Vancouver (apparently they finally bought a cryo unit a year ago and we have a part time doc that works here in Vancouver and in LA at the UCLA).
So there are choices. If you decide to proceed with the clinical trial I strongly suggest to use the break to try to have the bigger ones/bad located/faster growing ablated by Dr.Litrup or any other experienced interventional radiologist.

[MANIA]

LCMA,
I can imagine You are going through difficult time right now!
I'm very sorry to know that.
I send You strong polish hugs to support You,
take care girl.
M

[Olga]

LCMA - you can do a self refferal to Dr.Littrup - just contact Barb and ask if you could send them the latest CT scan on a CD and then see what they say. The same with Dr.Rolle (the reason he might not take you is that spinal met so I would get it treated by the radiosurgery if possible). It always pays out to have few leads investigated at once.

[Bonni Hess]

Dear LCMA,
I am so sorry that the Nexavar (Sorafenib) was unsuccessful in providing longer and more sustained stabilization of your disease, but I am grateful that you at least don't have any new mets which is a victory in itself and perhaps means that the Nexavar was effective in that regard. I agree with everything that Olga has said and all of the excellent advice and valued expertise that she has offered. I also think that it would be very wise and beneficial for you to pursue either lung laser surgery with Dr. Rolle if he is willing to treat you and it is affordable for you, or if not, Cryoablation for your largest lung mets prior to beginning any new systemic treatment because Cryo could help reduce your tumor burden and therefore possibly enable any systemic treatment you receive to be more effective. Brittany has successfully undergone two lung Cryo procedures with Dr. Littrup to ensure that several of her largest and most concerning lung mets didn't grow too large to be treatable. I personally feel that Dr. Littrup is the best Cryoablation interventional radiologist in the United States because he pioneered Cryoablation for lungs, he has extensive experience with the procedure, and he has treated several ASPS patients. Dr. Littrup makes it very clear that he is limited in the number of lung mets that he can treat and that it is not a cure, but he is willing to ablate a limited number of unresectable or concerning lung mets to prevent their continued growth with the strong recommendation that the patient then pursue a systemic treatment to try to prevent new mets and to shrink/destroy the remaining ones. Regarding systemic treatment, I am wondering why you haven't considered/pursued Cediranib since it seems to have been one of the most successful systemic treatments thus far for ASPS patients. Unfortunately, like all of the other treatments, Cediranib is not a permanent cure because resistance ultimately develops and progression occurs but at least it seems to have a greater initial "Wow" factor, as former Cediranib patient Clare Clarke has described it, and appears to have provided the most significant tumor shrinkage of any of the other currently available tyrosine kinase inhibitors. I am glad that you agree and understand about the importance of having brain MRI's with ASPS, and am Hopeful that you will be able to schedule one sometime soon through your new oncologist. I Hope that you have a good meeting and positive outcome to your consultation with Dr. Meyer at John Hopkins, and I will be anxiously awaiting the results of your appointment , his recommendations, and your treatment plan. Take care dear LCMA and know that I am sending you a big Washington hug to go along with Mania's strong Polish hug .
With deepest caring, healing wishes, and continued Hope,
Bonni

[Bonni Hess]

Thank you for the additional shared information LCMA. Based on the two+ Cm. size of a couple of your lung mets, if you are considering Cryoablation it is very important for you to pursue it for the largest and most concerning mets as soon as possible because three Cm. is about the maximum size that Dr. Littrup feels can be successfully ablated. Take care and keep in touch.
With deepest caring, healing wishes, and continued Hope,
Bonni