Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Bonni and family
Amanda had a good natural remedy for hydrating. Celery and cucumber juices
As a family we are buying organic as much as we can
It can cost a little more but it eliminates part of our worry of possible cancer causing chemicals
The good news is a lot of the IGA stores are carrying off brands in organic products
Adding something like peppermint to settle the stomache might work too
Are there any other cedirinib patients with remedies that they use to offset the side effects ?
Biorhythm feed back is really great to master too. In a way biorhythm helps a person to prioritize and better manage all of their maladies more constructively I so hope that it helps Brittany.


Well wishes coming your way from us in Kansas. 84 to be the high today.
Love
Debbie

Hi Bonnie,
I'm so sorry to hear Brittany is still sufferering the side effect from Cediranib and her severe spinal pain.
We all know Brittany is a success in the Cediranib trail, but we couldn't see her pain... How optimistic and strong is she! Tough girl.
Please give her a warm hug for me.

Thanks,
Lynette

Dear ASPS Community Friends,
During this beautiful season of special Thanksgiving I and my family are especially grateful for the VERY GOOD SCAN RESULTS!! that we received yesterday from Brittany's 54 month Cediranib Clinical Trial chest CT and abdominal/pelvic MRI scans in Edmonton which VERY thankfully showed continued stable disease with no new tumors!! We are deeply grateful too for the Cediranib which has made Brittany's four and a half years of sustained disease stability possible, the strengthened Hope that it has brought, and the continued dedicated care, caring, and incredible knowledge of Dr. Sawyer and his wonderful Cross Cancer Institute Phase One Staff. Thanks to Dr. Sawyer's gracious willingness the past two scan visits to request and schedule abdominal/pelvic MRI's for Brittany rather than abdominal/pelvic CT's due to our concerns about the extensive amount of CT radiation exposure that Brittany has received from CT scans during the past 12+ years since her ASPS diagnosis and how very sick the CT contrast causes her to feel, Brittany now feels MUCH better following her scans and is actually able to eat and be active rather than suffering debilitating severe nausea, stomach cramps, diarrhea, and vomiting during our time in Edmonton and on her return flight to Seattle!!
The status and future availability of Cediranib remains unknown, but Dr. Sawyer said that Cediranib has recently shown success in treating ovarian cancer patients so this may be an incentive for Astra Zeneca to re-evaluate it's decision to discontinue pursuing development of the drug .
We continue to move forward on this challenging journey with great Hope, but also with the constant awareness that rebound and disease progression can occur at any time with this insidious disease, so our ongoing research, active networking, and relentless search for a permanent treatment and cure continues. As Amanda has so wisely noted, none of us fighting ASPS can EVER let our guard down and become complacent, and we must remain vigilant with scans, as knowledgeable and well informed as possible, and very pro-active in our battle.
Take care everyone, keep in touch with the Board, have a beautiful and blessed Holiday season, and know that you are all held very close in my heart and most caring thoughts.
With a heart filled with deepest gratitude, great relief and happiness, and continued Hope,

I am so happy hearing this news and also the hope that they will continue the medicine so it can continue to help kill an freeze this evil intruder!
How many others with ASPS has this happened with?

I needed so badly to have good news today an thank you for making me smile!

Love and hugs!

Dear Amamda,
Thank you for your kind message and for sharing the great joy and strengthened Hope of Brittany's continued good scan results with so much genuine happiness and special caring. I am unsure how many ASPS patients, if any, have had the long term successful Cediranib response that Brittany has thankfully had thus far, but to our knowledge, we think that Brittany may be the patient with any type of cancer with the longest sustained stability on Cediranib in the World!! We, and Dr. Sawyer, continue to wonder if Brittany's more positive and sustained response is attributable to her having first started her Cediranib dosage at 45 mg. per day before eventually reducing the dosage to 30 mg. due to the severity of the side effects on the higher dosage. The current Cediranib Trials at NIH and in England start with a 30 mg. daily dosage. Of course our theory that initially starting the drug at a higher dosage may be more effective is all just conjecture on our part at this point as there is not enough data available to confirm or disprove our theory, but we wish that it would be addressed and pursued by NIH and Professor Judson in England in their current Cediranib Trials. As with everything with this extremely rare and poorly understood disease, there are not enough patients and study data available to make any definitive or documentable conclusions.
I'm grateful that the good news from Brittany's scan results was able to bring you a smile today . My heart breaks for all of the pain, worry, and stress that you have been going through recently dear Amamda, and I am SO VERY Hopeful that the doctors will rule out an ASPS jaw met as the source of your jaw pain and swelling, and that it will be determined that it is instead a dental related infection which can and will be quickly treated and resolved so that you can move forward with your thoracic surgery as scheduled.
Please take good care of yourself and feel the embrace of my warm hugs, my special thoughts, my deepest caring, my healing wishes, and continued Hope,
Bonni

Bonni and family

What wonderful news to hear of on Brittany's scans! We are also relieved to hear of her feeling less side effects as well
I join Amanda in thanking you for including us all in the good news !

Hugs from the Midwest
Love
Debbie

Thank you for your kind words Debbie. It is always SO good to be able to share good news and continued Hope As we all continue our shared ASPS journeys, Hopefully there will ONLY be good news to share for EVERYONE in our ASPS Community!!
My very special thoughts and best wishes are with Josh, you, and your family in your efforts to find the best treatment for his lung mets and I will be anxiously awaiting the next update.
With deepest gratitude for your special shared caring and support, and with healing wishes for Josh and continued Hope,
Bonni

Dear ASPS Community Friends,
We received a wonderful early Christmas gift yesterday with the VERY GOOD SCAN RESULTS!! from Brittany's yesterday's regularly scheduled brain and spinal MRI's in Seattle which very thankfully showed CONTINUED STABLE DISEASE AND NO NEW BRAIN OR SPINAL METS!! We normally schedule these scans every three months knowing how quickly and agressively any new ASPS brain or spine mets can grow, but because of the Thanksgiving holiday and our being out of town until a few days ago, we postponed the scans until yesterday which was a worrisome almost four months since Brittany's last brain and spinal MRI in mid August. We now move forward into the holidays with great relief, extra special joy, and strengthened Hope in our hearts, and into the New Year with special wishes and Hope for a most bright and beautiful new year ahead that brings a permanent treatment and cure, complete healing, and renewed good health for all of the ASPS Community patients who share this difficult journey and very challenging battle with this insidious disease.
With a happy heart filled great joy and relief, happiest holiday best wishes, and continued Hope,
Bonni

Dear Bonni,

So happy to share in your celebrations of Brittany's wonderful news!

God bless.

Marietjie.

Bonni and family

The news has to be the greatest gift a family could receive!
What a wonderful day it must of been and will continue to be

Here's to continued good news !!

Love
Debbie and family

Bravo! Keep going!

Thanks for sharing these good news with us, Bonni. I hope the side effects of Cediranib will remain tolerable.

Best wishes,
Johannes

Iam sorry it has taken me this long to reply!

YAY!!!! xoxo i am so happy!!! )

Wonderful news! So happy for Brittany!

Dear ASPS Community Friends,
Following last weekend's victorious Seattle Seahawks Superbowl victory and happy celebration , we drove and Brittany flew from Seattle to VERY cold (15 below zero!!) Edmonton, Alberta where we thankfully received continued VERY GOOD and encouraging!!!!! scan results yesterday from Brittany's Thursday's 57 month Clinical Trial abdominal and pelvic MRI and her chest CT which gratefully showed continued stable disease and no new tumors!!!!! so the joyful celebration continues . Brittany's wonderful and extremely dedicated, knowledgeable, and caring Clinical Trial oncologist Dr. Sawyer delivered the good news with great relief and a genuinely happy grin, but said that there was initially some concern because of something that he described as an abdominal area "artifact" that showed up on the MRI. However after closely reviewing the scan together with a very experienced radiologist who he greatly respects and trusts, they both feel fairly confident that the "artifact" was the result of liquid in the bowel that was somehow mirror imaged on the MRI. We will of course continue to closely monitor the area when Brittany has her spinal MRI in March and again when she has her 5 YEAR!!!!! Clinical Trial status abdominal/pelvic MRI in late April, but we are holding VERY tight to Hope that it is indeed just an "artifact' resulting from a blip on the MRI. Dr. Sawyer said that this is nothing that has ever appeared on previous MRI's including Brittany's very recent spinal MRI in December which he thinks would have most certainly shown it if there is indeed some kind of lesion. This situation demonstrates that scans are not always clearly definitive and that they require close expert review and monitoring.
I Hope that this finds all of you having a good beginning to the New Year and those of you in the brutally cold and frigid Polar Vortex areas of the USA and Canada staying warm and safe. Take care everyone and keep in touch with the Board as you are able.
Celebrating and sharing Brittany's good scan results with a heart filled with great happiness, deepest gratitude, and continued Hope,
Bonni

Bonni and family

Hooray !! So glad of the news. Also glad you are safe at home.
Thanks for sharing !

Much love
Debbie and family