Kat's daughter from Australia - Dx Jul 2013 at 7 yrs old

[D.ap]

April scan clear!
We went back to SCH (Sydney Children's Hospital) and Ronald MdDonald house in April for our MRI. This went well with Annika being her normal cheerful tough self. Our oncologyst was away however and we went home before we got the results (we live 5 hours away). After some chasing, we were told that it looked OK, but one of the oncology team would call if there was a problem. All a bit stressful!
Annika is enjoying school and is doing well. She is gradually improving her handwriting and she is working hard on her physic.
We go back for our MRI/CT in July.

Damian (Annika's Dad)

Damian And Kat

The news is wonderful! Thanks for including us in the great news.

Only the chest, our onc seems to be confident that any mets will start there. Do they always follow this pattern? I can't find any cases to contradict this, but it does concern me that he doesn't want to do a larger area CT unless there are lung mets. In fact he has suggested yearly CT and six monthly X-ray, he is concerned about Annika's radiation load....

The scan suggesting alternating with ex-rays sounds logical as Annika will need monitoring her whole life.
However there really needs to be a baseline scan of lung cavity area as well as brain and bone.
I can't find any paper written on ASPS traveling to the adrenal area before the lungs but I would rather be safe than sorry.

Love to you all
Debbie

[Amanda]

Hello
The fact that cancer will be a part of your lives is not fun i know
BUT the fact that you are beating this so far is something to dance in the streets over!!

I am glad she has a mommy that is so on this... There have been cases of this showing up thirty years later! There will be times in your lives that you will want to do something else i know i do lol BUT try and turn this into a celebration every time they are clean scans an not the fear!

The lungs is 97% chance and it does go to other places at times. The problem with this saroma is we just don't know and neither do the oncologists... An any oncologist that says they know should be replaced...

The adrenal glands are not that easy to just see in a scan and they need to look specifically for this
*I know we just found some thing on one of mine and this was explained to me by the radiation doctor that reads the scans*
Though they are saying maybe syst i don't know about that yet!

As a mother also an living this fight what i would do is get the scans every six months to just make sure for the first two years. Find out the real threat of radiation and then think about the real threat over the first two years of return. It is a macroscopic spread that can sadly awaken any time it wants
Then have a discussion with the doctor you feel is wonderful and loving and trust.

I am not sure how you will make this fun for her or turn this around for her having four scans over the next two years But, i have faith you will!

The four scans of radiation is much less them missing some thing that will turn your life in turmoil like mine has!

Stay strong and stay vigilant!
An you are an awesome mommy!

[Kat]

What exactly is a bone scan? We'd like a full body MRI.

[Amanda]

Hello
I am going to have a bone scan soon an my Onc said that i should have had one when i was diagnosed an every year after! am five years out now

It is a machine like a CT scanner an they give you an IV for medicine an then you go out for a few hours an come back an get a scan..

They said then the next day they do a scan with noc contrast...

This scan look at the bones an it is a very good idea because ASPs eats bones i know first hand

If you can get this done i would do it

[Bonni Hess]

Dear Kat,
Annika, and all ASPS patients should definitely have a full body bone scan once a year to determine/ensure that there are no bone mets. It is an easy scan that involves an injection of radioactive contrast several hours prior to the scan followed by a CT type scan of the whole body. There are no dietary restrictions prior to the scan nor drinking of distasteful contrast as there is with abdominal CT's. Pro-active scanning is essential in managing this unpredictable disease, but unfortunately/irresponsibly too many doctors are remiss in this and wait until the disease becomes symptomatic which can sometimes then be too late for the best chance of successfully resecting/treating an ASPS met.
I Hope that dear little Annika and all of your family are doing well and enjoying a beautiful month of June in Australia.
With special hugs, caring thoughts, healing wishes for Annika, and continued Hope,
Bonni

[Kat]

Annika's MRI and CT are clear!
The surgeon was very pleased with her progress, her arm has full motion and nearly full strength despite her losing 75% of her triceps. She is up to 1kg weights for her skull crushers and she needs 1.25kg ones, she does stacks of physio!
Our onc wants to see us in January instead of October and we will do a chest x-ray instead of CT, with a CT next July. We have convinced him to do an MRI of her head as well as the primary site in her arm, as we feel that we don't have an effective scan of her brain as the PET last year didn't even show her primary!
I was happy to see that Australia now has a Cyberknife as well as Gammaknife, the Cyber is on the other side of the continent, but it's still closer than overseas.... I hope that we never need them, but it's good that the Cyber is a new one that can do lung surgery. I'd still prefer Dr Rolle's laser from what I've read, has anyone had Cyberknife treatment for lung mets?

She also turned 9 on the 3rd of July and had a great birthday instead of spending it in recovery from surgery like last year. She had a pyjama party with puppy adoption for 7 kids!

Good stuff!

Damian

[D.ap]

Annika's MRI and CT are clear!
The surgeon was very pleased with her progress, her arm has full motion and nearly full strength despite her losing 75% of her triceps. She is up to 1kg weights for her skull crushers and she needs 1.25kg ones, she does stacks of physio!
Our onc wants to see us in January instead of October and we will do a chest x-ray instead of CT, with a CT next July. We have convinced him to do an MRI of her head as well as the primary site in her arm, as we feel that we don't have an effective scan of her brain as the PET last year didn't even show her primary!
I was happy to see that Australia now has a Cyberknife as well as Gammaknife, the Cyber is on the other side of the continent, but it's still closer than overseas.... I hope that we never need them, but it's good that the Cyber is a new one that can do lung surgery. I'd still prefer Dr Rolle's laser from what I've read, has anyone had Cyberknife treatment for lung mets?

She also turned 9 on the 3rd of July and had a great birthday instead of spending it in recovery from surgery like last year. She had a pyjama party with puppy adoption for 7 kids!


Good stuff!

Damian

Damian , Kat and Annika ,

What great news of the scans and the return of strength to Annika's arm!
I am so glad of the additional scans be scheduled as well.
Enjoy this time off. You all deserve it
Lots of hugs
Debbie

[Kat]

Thanks for your words, it's such a relief to hear "clear scans". Our neighbour has just been diagnosed with small cell lung cancer and is suffering badly, we haven't told the kids. They caught his tumour while checking his pancreas, the edge of the CT showed the base of his lung. He has only the one tumour which is very unusual in that cancer. I know it's a different cancer, but all my instincts tell me that they should remove it surgically and then do chemo, instead of just trying chemo. He is in severe pain radiating out from his lung. It really brings it home when it's next door!

[Kat]

Thanks for that info. I've been reading about aldoxorubicin being effective in some lung cancers and STS, also the NK92 natural killer cells look interesting. Now that they have a line os ASPS tumours xenografted into skid/ncr mice, I hope they are testing all available treatments to see what works. I have been in contact with an ASPS patient who is trailing the CD47 therapy, I'll post here when I know more.

Damian

[Kat]

This was interesting;
http://www.cell.com/cell-reports/abstra ... all%3Dtrue
Shutting down mets would be great.

[Bonni Hess]

Dear Kat and Damian,
Happy belated 9th Birthday to dear Annika and greatest shared happiness for the VERY good results of her most recent scans and the return of strength to her arm She is truly an amazing and very courageous little girl and I know how very proud you must both be of her :-) I am grateful that you are remaining very proactive in the monitoring of her disease by requesting a brain MRI as well as one of the site of the primary tumor in her arm which I am holding very tight to Hope will show no brain tumors or tumor re-occurence at the primary site. Given the known nature of ASPS to metastasize to the lungs, I would personally recommend that you request that the doctor schedule a chest CT in January rather than just a chest X-ray to ensure that any possible lung mets be found at the smallest most treatable size which is not possible with an X-ray which only shows large lesions. I understand that there is a concern about more radiation exposure with a CT as compared with an X-ray, but I personally feel that the benefits outweigh the risks. In the meantime, please know that I am joining you in celebrating the VERY good and relieving results of Annika's scans and sending best wishes for continued stable disease and much happiness shared together with your precious daughter.
Reaching out across the miles to embrace you with happy hugs, healing wishes for dear Annika, special caring thoughts, and continued Hope,
Bonni

[Kat]

Dear Kat and Damian,
Happy belated 9th Birthday to dear Annika and greatest shared happiness for the VERY good results of her most recent scans and the return of strength to her arm She is truly an amazing and very courageous little girl and I know how very proud you must both be of her


G'Day Bonni,
Thanks for your post. We are very proud of Annika's toughness, determination and cheerfulness. She has worked very hard on her arm and is now reaping the benefits.

I am grateful that you are remaining very proactive in the monitoring of her disease by requesting a brain MRI as well as one of the site of the primary tumor in her arm which I am holding very tight to Hope will show no brain tumors or tumor re-occurence at the primary site. Given the known nature of ASPS to metastasize to the lungs, I would personally recommend that you request that the doctor schedule a chest CT in January rather than just a chest X-ray to ensure that any possible lung mets be found at the smallest most treatable size which is not possible with an X-ray which only shows large lesions.


Yes we are concerned about this, we are pushing our onc on the scans, he didn't consider the brain MRI necessary, but we wanted some other areas scanned as the PET doesn't seem to show anything at all.

I understand that there is a concern about more radiation exposure with a CT as compared with an X-ray, but I personally feel that the benefits outweigh the risks.


I agree, but there is reluctance on their behalf. I'm going to push them to extend the next CT down to cover her abdomen as again we don't have a decent image of there.

In the meantime, please know that I am joining you in celebrating the VERY good and relieving results of Annika's scans and sending best wishes for continued stable disease and much happiness shared together with your precious daughter.
Reaching out across the miles to embrace you with happy hugs, healing wishes for dear Annika, special caring thoughts, and continued Hope,
Bonni

Thanks so much, it is good to have people with ASPS to correspond with, Annika is the only child with ASPS is Australia that we know of. She had a good day today, it was beautiful, almost like a summer day instead of mid winter.

Cheers

Damian
PS, most of my reply is in the quote box sorry, don't have time to re-do it!

D

[Kat]

Hello all,
I had an interesting conversation today with a doctor I met through work. It is interesting that is seems that many doctors are resistant to pursuing surgical clearance of tumours as the first course. He'd never hear of ASPS, but he was dubious as I described how it is chemoresistant and not very radiosensitive. From what I've read here and on the web, removing any tumours found as soon as possible seems to be the best course. I think that they default to thinking of conventional surgery, whereas I understand that going after the small mets with laser/cryo/gamma/cyberknife is the way to go. I've decided to call it ISD for Immediate Surgical Destruction. I might have to prepare some info on how ASPS responds to various surgery options and drugs to have ready in case we need to convince doctors to do something. It'd have to be case study based I suppose with maybe some clinical trial data.

Damian

[D.ap]

Damian

I like your acronym and it brings a chuckle to my being
ISD
Good job on looking to the future!

We have surgeons here in the states with the idea of cut now as in remove whole limbs , then talk later if I am understanding you correctly. That is all fine and dandy if the area can be "treated that way" no way around it bone etc .

I am reminded of a friend in my child hood address block of a population of 50 K at the age of 9? who disapeared from school and showed up 2 months later with a prostetic of her leg..
an obvious amputiation she moved soon afterwards. I don't know what happened
I am soon to be 57 years young I suspect ALIITLE older than you all. ( southern slang)

Lungs, brain and other soft tissue areas can't always be wedged time and time again, as you know, so why not "section" or create positive margins with heat or cold? and save the remaining organ to be used..
Excuse my "cold explanation" as our bodies truely are a gift and they should be treated as though.

Much love
Debbie P

[Kat]

G'Day everyone,
It's been a while, but that's OK as Annika is doing well and is having a good and mostly normal school year, great compared to last year! We have our next scans in January during the summer holidays.
I research extensively daily, mostly trying to catch up to people here who have vastly more knowledge and expierience than I do. Two articles stood out today, one looking at why VEGFR inhibitors are less effective than expected, melanomas seem to have endothelial-like cells in their blood vessels that do NOT express VEGFR, so the targeted therapies are less effective, but they may present their own drug targets. I wonder if this is common across tumour types?

http://www.nature.com/ncomms/2014/14102 ... s6200.html

The other was a new drug OTS964, that in mouse models was strikingly effective. There are many new breakthroughs and new knowledge every day, I'm hopeful that our new techniques will provide new non-cytotoxic agents.

http://www.newswise.com/articles/highly ... ts-in-mice

Take care.

Damian

PS Ivan, I will run my third Tough Mudder on the 15th of November, i am using the event to raise money for the Starlight Children's Foundation, I'm aiming for $5000, I'm over half way there.