Amanda from New Zealand - Dx 2014 @ 46 yrs of age

[Amans]

Hello all

Another Amanda here. I have known I have cancer for 7 months but for 5 of those months I believed my primary tumour was a neuroendocrine tumour. Now, after a very thorough histology in another country, it is asps.

I have know idea how long it is has been growing on my gluteus maximus muscle. Maybe since my twenties? But it didn't present any symptoms until last year when it became painful to sit for too long. Even though it is 9cm x 6cm it wasn't noticeable to me before that. Anyway, time enough for it to spread to my lungs, liver, shoulder bone and diaphragm. I have had radiotherapy on the last two places to address pain.

I am waiting to hear if I can start taking Sunitinib and am interested in hearing of other people's experiences while taking this drug. There is a trial in Sydney or Brisbane, Australia, for Cediranib, but I live in New Zealand and would find the travelling and expense too much to bear. Also, I don't want to be away from my husband and children in these precious days after diagnosis.

I find the rarity of this cancer quite amazing to think about but I guess having knowledge of it before diagnosis may not have helped me.

Amanda H

[Olga]

Hi Amanda, welcome to the forum...It looks like you had it for a long time and you are correct - it is unknown if finding it earlier would help you to live longer. This sarcoma has a very high metastatic rate even after apparently clean initial resection of the non-metastatic tumor - means it disseminate very early when the tumor is still small, like it happened to my son Ivan.
The plan to start Sunitinib looks ok, other drugs to try are pazopanib and if there might be a clinical trial for cabozantinib, it is showing better results in the people with the soft tissue and bone metastatses - that what you need. Also you can point out to your drs that we know some people with ASPS that had better outcome with the radiation when it was used concurrently with pazopanib, so it worked as a radiation sensitizer.
Also there might be some types of the local tumor ablation, like cryo or RFA that might be used to ablate some tumors in the liver etc. if they are borderline sized for the ablation 20-30 mm so the bigger ones would not represent an immediate danger and you get more time with your kids and trying diff. chemos.
Good luck,
Olga.

[D.ap]

Hello Amanda ,

I so sorry to hear of your diagnoses however I echo Olga's message in that there really isn't any thing you could of done differently .

The point is it is here and now and you can combat the disease today and in the future by
keeping your family in your immediate focus and know they are here and they alone will sustain you far into the future .

Much love
Debbie and family

Our family's story
http://www.cureasps.org/forum/viewtopic.php?f=4&t=750

[Amans]

Thank you Olga and Debbie for replying so soon.

Sounds like you have a wealth of knowledge and I will gain a lot of insight from being a member of this forum. ASPS is so rare in New Zealand that my oncologist had to look up information on the Internet and there is only one sarcoma specialist in the South Island. I would be keen to know if there is anyone else in New Zealand with it.

Thank you for the information about different drugs to try.

Amanda

[D.ap]

Hello all

Another Amanda here. I have known I have cancer for 7 months but for 5 of those months I believed my primary tumour was a neuroendocrine tumour. Now, after a very thorough histology in another country, it is asps.

I have know idea how long it is has been growing on my gluteus maximus muscle. Maybe since my twenties? But it didn't present any symptoms until last year when it became painful to sit for too long. Even though it is 9cm x 6cm it wasn't noticeable to me before that. Anyway, time enough for it to spread to my lungs, liver, shoulder bone and diaphragm. I have had radiotherapy on the last two places to address pain.

I am waiting to hear if I can start taking Sunitinib and am interested in hearing of other people's experiences while taking this drug. There is a trial in Sydney or Brisbane, Australia, for Cediranib, but I live in New Zealand and would find the travelling and expense too much to bear. Also, I don't want to be away from my husband and children in these precious days after diagnosis.

I find the rarity of this cancer quite amazing to think about but I guess having knowledge of it before diagnosis may not have helped me.

Amanda H

Hi again Amanda,

I've looked for other patience who may be in your area and can't find at this time..but will keep looking.
I assume you've had the primary removed and the diaphragm and shoulder areas have been performed? RFA just recently?
Have you had an MRI of your brain performed yet?

I know this must all be like a bad dream as I am sure that all the patience can feel from time to time.
Do you have any idea how many tumors are in your lungs?

All these questions..

Write when you can.
Love
Debbie

[Amans]

Hi Debbie

No worries about answering your questions.

I was living in Egypt until the end of June and then moved back to NZ. I taught at an International School and managed to work two weeks and then have a week off for chemo. The hope was that there'd be some regression and the tumour which was considered a neuroendocrine tumour could be removed in NZ. That, of course, didn't happen.

Now, there isn't any move to remove it immediately but there is still a possibility of it happening. I had four sessions of radiotherapy on my diaphragm and shoulder. There are a multitude of lesions in my lungs and liver. The biggest is 3.5cm.

Amanda

[D.ap]

The 35 mm is in your lung I assume ?
Olga has an idea of folks who have had liver treatments as well
http://www.cureasps.org/forum/viewtopic ... t=303#p794

Is the tumor on the gluteus maximus encroaching on the spinal colum ?
Our sons tumor was almost 70 mm long in his right upper thigh. He was 32 years old at the time and is currently 34 .

If you do go for a surgical removal be sure and have your doctor / surgeon consult with doctors around the world as it is a complex vascular cancer to deal with. Positive margins really need to be obtained if at all possible to be successful in preventing reoccurrence in that area.

A routine sched of scans for the brain , lungs diaphragm area and in your instance , the RFA treated area are absolutely necessary to be ahead of the fight.
See: http://www.cureasps.org/forum/viewtopic.php?f=4&t=819

You may be counseled to wait and see till scans are scheduled ,however it is well adviced to not wait and see as you know how your primary snuck up on you as it did for us all.
Anyway I hope today brought you answers and joy.

Much love
Debbie

[Amans]

Thanks again, Debbie, for taking the time to respond.

I have that size of lesions in both my lungs and liver. Also I forgot to say. I had an whole body MRI done in January when the primary tumour was discovered but none specifically for the brain. It is not near the spine but it does encroach on the sciatic notch.

Sounds like I will have to wait three weeks until I hear if I can take Sunitinib.

Cheers
Amanda

[D.ap]

Hi Amanda

I hope you love to read , cause I , we intend to supply you with some "light " reading
Article
Persistent alveolar soft-part sarcoma with liver metastasis: a case report
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2922299/
What is your doctors plan with sutinib and the remaining tumors in the lungs, liver and the remaining primary tumor ?

Love and cheers

Debbie
Sent from my iFone

[Amans]

Hi Debbie

I guess my doctor's plan is to try Sunitinib and see what happens. I am not aware of anything else being considered.

Cheers
Amanda

[D.ap]

Morning Amanda

Does your doctor have any idea whether your liver tumor could be ablated and if your lung tumor(s) are in an area that can be taken care of with out a lot of complications ?

Your scans need to be with a central person if at all possible to compare as time goes by. ASPS typically grow slowly but sure can cause problems with breathing etc. Tumors here in the states are being eliminated before they become overwhelmingly symptomatic by cry oblation and heat with the aid of MRIs and CT scans . Up to the point of pain we know that the tumors lurk and are asymtomatic.
Also spinal tumors are being removed with some success as well.

http://www.cureasps.org/forum/viewtopic.php?f=7&t=5
http://www.cureasps.org/forum/viewtopic.php?f=17&t=588

Love
Debbie

[Bonni Hess]

Dear Amanda,
I am so deeply sorry for your ASPS diagnosis and the metastatic spread to your lungs, liver, shoulder, and diaphragm, but I am grateful that you found your way to this site and that you have reached out to the ASPS Community for shared information, input, and support which are all so critically important in fighting this extremely rare and very challenging disease. I encourage you to pursue resection of your primary tumor if it is possible prior to beginning a systemic treatment in order to prevent the tumor from continuing to disseminate tumor cells into your blood stream and to reduce your body's tumor burden to strengthen your immune system and better enable you to fight the disease. I agree with Olga's and Debbie's recommendations for Cryoablation or Radiofrequency ablation for your liver mets if they are located in an area of the liver where they can be safely ablated. Regarding the doctor's systemic treatment recommendation with Sunitinib (Sutent), to my knowledge, Sutent has unfortunately been relatively unsuccessful in providing any significant tumor shrinkage or sustained disease stability for those ASPS patients who I am personally aware of who have undergone treatment with this Tyrosine Kinase Inhibitor (TKI) drug. However, Sutent does seem to have had some limited success for some ASPS patients with initial tumor shrinkage and short term disease stability, and of course each patient is different in their response to different treatments. Based on anecdotal treatment experiences of other ASPS patients, I personally think that Cediranib, Cabozantanib, or Pazopanib may be better systemic treatment options for you to explore if they are available to you. However, I continue to feel that resection of your primary tumor should be your first and most urgent priority. In the meantime, please know that you are not alone in this difficult battle, and that those of us on this Board are here to help you in any way that we can with shared researched and anecdotal information and strengthening support and encouragement. Take care dear Amanda, keep in touch as you are able, and let Hope continue to lead you through each day on your ASPS journey.
With special caring thoughts, healing wishes, warm friendship, and continued Hope,
Bonni Hess, mother of now 32 year old ASPS patient Brittany diagnosed 13+ years ago in July 2001 at age 19

[Amanda]

Hello other ((AMANDA)))
I agree with what everyone has said an Bonnie an everyone herere helped me a lot in deciding what to do.
Because of your age i would also bet you have had this a long time! My Doctors said that about me i am also not a teenager

Please bcheck to see if the lung mets as Bobbie said to use cyro I just did it three weeks ago an it was a tricky met on the broncial tip...

Till i get my scans done i dont know if it is dead. But, i have been thru a LOT of suregeries... an I wish i would have been doing only this for my lung mets the whole time! I would be in less pain an be stronger!

Mail me in the forums an i will reply!

I am very glad you found these forums!

An thought it is cool to have another Amanda i am pissed it has attacked three Amandas in this forum.. BTW we are all here <3

PS..
Have you had a bone scan yet? You said it is in a bone! Please, dont make the mastake i did an not get this scan done! A LOT of my cancer is bone! An as you know OMG it hurts a lot!!!

I will be fighting to get a bone scan soon as i am better an my pain is gone form a HUGE head an neck surgery where they had to remove some of my jaw.. Yes, this dam cancer goes there also It goes where ever it wishes

My plan now is it is looks or feels weird.. scan it
Let them know you will end up paying for it an if they bstill refuse to pay you back tell them they are in Bad Faith an that it is agenst Obams health care acry to deny paitents scans!
They CIGNA are denying scans for mt next cyro on my adrenal gland.. boy are they stupid doing that!
But, i think i am talking about USA an i dont think you are here

Where are you maybe Dr L or my cyro DR will know somone where oyu are.. Where are you?

OK PSS>>> lol
You are alos a mom!!! I agree dont treat far away formt he lil ones! It will make it hard for you emotionaly! you are in New Zealand right?
They are pretty progressive an i bet Dr L or my Dr will know of somone..

I am not sure how many mets you have an if some are doamnt like mine... we will see over the next few scans. Not happy he went rigjt to a chemo though.

Any yaw you can send files an scans to Drs here in the US an ask your insurance if they will pay for US treatment. The cyro is a LOT cheaper then an open lung surgery. An that can be a bear to heal from! Not to mention the nerve damage an later pain I am going thru all the surgeries on my right rinde where they removed cancer an damaged a nerve are all pissed off an i am hurting super bad! The cyro wont do that An we are going to cyro all that are there over a few months time. i hope all growing cancer in my lungs will be frozen to death! bwahahaa an then i can go on with life getting scans an taking it out where we find it an freezing every thing that can e treated that way!

I have notised that every thing is on the same side for the most part as my primary.. so all right sode :/ not sure of that happens to everyone :/ My lung mets are mostly on my right side :/

[Ivan]

Welcome to the forums. It's incredible that you've potentially had ASPS for 20 years without much symptoms.. Quite a story!

[D.ap]

My question is

Why did the doctors call the pathology report as a neuroendocrine cell?
My intention is not to slam or critisises
Maybe there is something to be said with the pathology?


http://en.wikipedia.org/wiki/Neuroendocrine_cell


Debbie