Prairie from Nebraska - Dx 2015

[D.ap]

Hi Mary Jo
I'm glad to hear of slowed down growth and Prairies over all well feeling.

I was wondering if you've reached out to Breelyn Wilky in Miami as she has been working with Bridget and her son Joe . They are involved with a vaccine trial . Joe has ASPS also. I believe he is currently 15 years old
Their story

http://cureasps.org/forum/viewtopic.php?f=4&t=1158

My favorite food is bacon too, tell Prairie. Adding protein supplements as well as oils and butter adds calories.
If Prairie likes chocolate milk, as our 8 year grand daughter does, try mixing high protein drinks with them.

I'll connect you to Bridget if you've not already met.
I'm on a face book ASPS group. If you like I could connect you to the admin person of that group.

I also follow Breelyn's tweets

Here's the tweet of today
http://www.targetedonc.com/news/new-age ... unotherapy

[D.ap]

Olga's thought

With ASPS the general rules of RECIST should not be applied as its natural speed of growth is usually less than 20%. It is better to know the patient's own natural speed of growth, when not under any treatment and few months after any major surgical interventions (the healing factors could increase the speed of growth a bit immediately after the intervention and it usually stabilizes by itself later).

There are medical papers written out there to support the rebound of metastic growth away from the primary is removed, as the blood volume switches if you will ?

Mice studies mind you, 1998
http://cancerres.aacrjournals.org/conte ... 1996.short

[Bonni Hess]

Dear MJ, I am sorry to be slow in responding to your thoughtful update, but I have been mostly away from the computer at our second Home in Montana where we had two weeks of out of town Thanksgiving and Holiday company. I am so grateful for dear Prairie's pelvic and brain disease stability, but share your concern about the continued small amount of growth of her lung mets and the lack of any shrinkage of her other mets. It does seem that the Cediranib is working to thankfully at least slow down her disease progression, but as you indicated, it is always difficult to determine if it is just the nature of this indolent disease or if the systemic treatment is actually having a succeessful effect on the disease. Time, and continuing to monitor the disease with regular scans seems to be the only way to obtain a definitive determination of the effectiveness of the treatment. My greatest Hope, most positive thoughts, and very best wishes will be with dear Prairie and your family on December 13th for very good scan results at NIH which show disease stability with no new mets, and shrinkage/disappearance of the existing mets. In the meantime, I Hope that you are all being able to enjoy the special activities of the Holiday season, and that you will have safe and good travels to NIH.
With warm hugs from cold and snowy Montana, special caring thoughts, healing wishes, much love, and continued Hope,
Bonni

[Vega343]

Hi there -
December scans showed stability as compared to the previous in October.
The growth since she has started the study in March is essentially limited to her lung mets - and from March 2016 - October 2016 there was slight (~10%) growth. It appeared to happen on the scan between August and October, but who knows. There was 1 brain met that is questionable as far as an increase during this time as well (the aura around the small tumor expanded).
Overall, the tumors were growing faster than this before we started treatment and were just monitoring for diagnosis in Aug 2015 to study start in Mar 2016. So I think it's safe to conclude it is slowing the growth - but maybe not preventing it. They absolutely could be growing too slowly to be detected at 2 month intervals, but we will take it. We will have a lab visit in Jan2017, then full scans again in Feb2017 per the protocol.
I would note that we have been a little lazy about getting her in for chiropractor and needless acupuncture lately, and I think that has caused her more frequent and severe diarrhea, I think it was helping more than we knew - back to the Chiro!
I will look up your note Olga and AP - thanks for any and all clues!
Should we go off the trial, I think I have decided to pursue gamma knife for brain mets, consultation about surgery for whatever is causing her pain in her pelvis, and maybe the Keytruda drug. Still on study for now -
Wishing everyone a peaceful holiday!
MJ

[D.ap]

Hi MJ

Thank you for the update.

The scans between aug and oct were performed at the same facility to compare to each time ?
It can be the difference of the machine and technician

Also, less then 10% can be 2mm-?
2mm is sometimes know plus or minus reading error, I believe .

Does Prairie have scans of her pelvic performed with an MRI?

My wishes and love , from our house to yours, for a Merry Xmas and even happier New Year.

Love
Debbie

[Bonni Hess]

Dear MJ,
I am sorry to be so slow in responding to your update but I got caught up in the busyness of the Holidays and am just now getting a chance to try to begin catching up.
I am grateful and encouraged that the Cediranib seems to be slowing the growth of dear Prairie's mets and stabilizing the progression of her disease with no new tumors, but I know that you are Hoping as I am that it will begin to shrink/destroy the mets. It is always so difficult to know if stable scan results are the result of the indolent slow growing nature of this disease, or if the drug is actually working, but all that any of us can do with this challenging disease is continue to be vigilant and as knowledgeable as possible with regular monitoring scans and comparing them to original scans to accurately determine the amount of any new growth.
Regarding Prairie's more frequent and severe diarrhea, I strongly encourage you to pursue bi monthly IV re-hydration for her which will help to alleviate/prevent the headache/nausea/vomiting related dehydration that can be caused by TKI related severe diarrhea.
In the meantime, I Hope that you enjoyed a beautiful and relaxing Holiday together with your dear family, and that the coming New Year will bring the miracle of healing to your precious little girl and good health and much happiness to her and all of your family.
With special hugs, caring thoughts, happy, healthy, peaceful New Years wishes, and continued Hope,
Bonni

[Vega343]

Thanks all.
Prairie just has diarrhea, which is controlled in a few hours with the Imodium and gas x we get through the trial. It is evident her level of sleep plays a role, which we try to control while balancing all she wants to do.
For Debbie, yes, the scans are all at NIH in DC, so we have established comparability.
Thanks for the continued following and advice! So appreciated, will keep u posted about feb scans!
Mj

[Bonni Hess]

Happy New Year MJ and thank you for the additional info on dear Prairie's Cediranib side effects thus far. I am so grateful that her diarrhea seems to be controlled by the Imodium and that she is not suffering from diarrhea associated dehydration, headaches, and severe vomiting. I Hope that she has been able to maintain her weight and enjoying all of her childhood activities. I will be anxiously awaiting her February scan results as I continue to hold her and your family very close in heart and thought. Heart to heart with deepest caring, healing wishes, and continued Hope, Bonni

[Vega343]

Hi friends -
Prairie is still doing well, still on Cediranib clinical trial at NIH in DC. All met's stable since slight growth detected in Sep2016.
She is still getting full scan work up every 2 months - our last visit was at the beginning of April. They do brain and pelvic MRI's with and without contrast, chest CT with contrast, labs, and physical.
Side effects are occasional diarrehea / cramps and loss of appetite. It is a struggle to keep weight on her, and she tries so hard to eat. She also needs more sleep than her peers, otherwise she gets diarrehea more often. We have been on the trial for just over a year and have been so fortunate to have many good times over that time.
Please take care - our next scans are 01Jun2017.

- MJ

[D.ap]

Hi friends -
Prairie is still doing well, still on Cediranib clinical trial at NIH in DC. All met's stable since slight growth detected in Sep2016.
She is still getting full scan work up every 2 months - our last visit was at the beginning of April. They do brain and pelvic MRI's with and without contrast, chest CT with contrast, labs, and physical.
Side effects are occasional diarrehea / cramps and loss of appetite. It is a struggle to keep weight on her, and she tries so hard to eat. She also needs more sleep than her peers, otherwise she gets diarrehea more often. We have been on the trial for just over a year and have been so fortunate to have many good times over that time.
Please take care - our next scans are 01Jun2017.

- MJ

Hello Mj

Its good news of being stable

What is the biggest lung tumor at this time?
I know Bonni has suggested this before but it's worth repeating. Have you tried IV fluids?

Protein drinks with protein powders, adding olive oils and eggs to foods prepared. Broths add protein and calories too .
Add the needed protein increase of grams per pound calculations



How many grams of protein does a person need?

The CDC reports that most Americans get more than enough protein, so the average person doesn’t need to worry about deficiencies. According to American Dietetic Association (ADA) recommendations, most active adults only need 0.8 grams of protein per kilogram of body weight per day.



Protein: How much do we need? | Grist

Consult a dietician because at 98Lbs we were shooting for 80grams of protein.
Our goal was to get productive calories for weight gain.


Peanut butters and oils should be avoided as they have shown to aid cancer proliferation , I believe?

I was looking for the article that Olga had posted about peanut oil
And found it.

http://www.cureasps.org/forum/viewtopic.php?f=53&t=1016


I hope Prairie feels better soon.

Love
Debbie

[D.ap]

Cediranib trial for kids, NIH USA 15mg / day
Prairie B, 9 year old female
ASPS diagnosis in August 2015. 7x8 cm primary tumor in pelvis removed in October 2015 with no margins. Remaining tumors: unquantified lungs mets (largest 4x3 cm) and 6 small (1-5mm) brain mets as of 03mar2016.
Trial start date, 04mar2016. As of day 8 - only a couple mild headaches (2) went away with Tylenol. She is and has been on a daily multi vitamin, probiotic, and 10mg of lexipro.
Hoping things continue with little side effects. Doing weekly labs and office visits, next trip to NIH is end of this month. Next scans likely end of April.

Hi MJ
Found your prior post to answer my questions

[Bonni Hess]

Dear MJ,
It was so good to hear from you with the wonderful news of precious Prairie's continued disease stability with no new mets . Has there been any shrinkage/disappearance of her lung and brain mets, or are they just remaining stable? It sounds like she is thankfully tolerating the Cediranib fairly well given all of the severe, negative, and debilitating side effects that can be caused by the drug, and which Brittany heartbreakingly suffered during the first several years of her Cediranib treatment, but which gratefully now seem to be somewhat dissipating . Have you tried medical marijuana to try to stimulate her appetite and help with her weight loss problems? Is she able to drink plenty of fluids to stay well hydrated so that she doesn't become dehydrated from her diarrhea? Otherwise, IV hydration is very helpful and has contributed to preventing Brittany's previously frequent severe nausea and vomiting episodes which required emergency hospitalization. I am grateful that dear Prairie is being closely monitored with regular scans, and I am grateful too that she is able to enjoy good childhood times with her friends and family. My very best wishes and most positive thoughts will be with her and your family for very good scan results in June, and I will be anxiously awaiting your update when you are able.
Sharing the very good news of Prairie's continued disease stability with greatest joy and reaching out to embrace you with happy hugs, special caring thoughts, healing wishes, and continued Hope,
Bonni

[Bonni Hess]

Dear MJ, It has now been almost 7 months since your last update and almost 2 months since I sent you an unanswered private message to check on how precious Prairie is doing and the status of her Cediranib Clinical Trial treatment. I know how very busy Life can be and how demanding, consuming, and overwhelming the ASPS battle is, but I am Hoping that if/when you get a chance you can post a quick update on this Board. Hopefully no news is good news, but given the unpredictable nature of Life and this insidious disease, I become increasingly concerned when someone is out of touch for too long because I care so deeply about every member of our ASPS Community Family. Take care dear MJ, know that you and precious little Prairie are held very close in my heart and most caring thoughts, and keep in touch when your time and the situation allow. Heart to heart with deepest caring, increased concern, healing wishes, warm friendship, and continued Hope, Bonni

[Vega343]

Hi All -
Prairie remains on the Cediranib trial out of NIH in Bethesda, it has been over 2 years!
Residual pelvic tumor and scar tissue - unchanged
Brian mets - unchanged
Lung mets - 16% increase over the last 2 years

P is feeling ok, needs alot of rest and works hard to maintain her weight. She has had more pain in her pelvis, not sure why, maybe adhesions.

She will be removed from the study if/when her lung mets increase by 20%, doctor thinks 6-12 months. Or unless they have a better treatment for her in the meantime.
I will be reaching out to our MSK oncologist, our local surgeon (to see about the scar tissue causing pain), and of course my ASPS forum friends to make the best choice for next treatment mechanism.

One option may be a trial for Atezolizumab at NIH.

[D.ap]

Hello Mary Jo

The news of stability is truly good.
The brain mets are still present ?
The largest lung tumor is over 3cm?

Atezolizumab is a possibility because Praries age group is accepted at this time?
Can you use the time between being off cedirinib and choosing another treatment to treat the existing tumors by the way of gama knife(brain )
How’s Prairies breathing ? Has she had an
echocardiogram ?

Sending hugs your way as you make future Med plans .

So good to hear from you
Love
Debbie