Brittany on Cediranib trial Phase 1 in Edmonton

[Bonni Hess]

Dear ASPS Community Friends,
Brittany has heartbreakingly been experiencing increasing VERY concerning neurological symptoms of headaches, dizziness, and right side body numbness and weakness for the past month and a half which prompted us to move up her previously scheduled 5 month brain and spinal MRI's at the University of Washington from May 2nd to April 22nd with the scan results follow-up with her long time radiation oncologist Dr. Rockhill yesterday, April 23rd. With a smile and the VERY welcome and relieving words, " The scans look good", Dr, Rockhill told us that the scans didn't show any new brain or spinal tumors, so he is referring Brittany for some neurological testing to try to determine if there is a "mechanical" cause for her debilitating neurological symptoms. Needless to say, we are VERY relieved that there are no new tumors, but need to find the cause of her increasing symptoms. There are so many variables and unknowns due to Brittany's past 23+ resections/ablations/radiosurgical procedures, her long term use of high dose opiate pain meds, and her now nine years of Cediranib treatment, that it is a difficult and complicated diagnostic situation. We will now pursue the neurological testing with the Hope that there is a benign and easily treatable cause for Brittany's symptoms. Take care everyone, keep in touch with the Discussion Board as you are able, and have a beautiful Springtime.
With immense relief and gratitude, special caring thoughts, and continued Hope,
Bonni

[Johannes]

Dear Bonny,

So sorry to hear about Brittany's serious neurological symptoms, but at least the MRI came back clear. That's great.

I really hope that the neurologist will have some useful thoughts.

With my very best wishes,
Johannes

[D.ap]

Hello Bonni
I echo Johannes’s response, as well as send hugs your way as you wait for answers.
Thru further scans , BW, motor testing as well as history , I’m sure the neurologist and team will come up with an initial plan .
My love as well as..

Love and prayers

The Pearson’s

[D.ap]

Hello Bonni
When you get a moment , could you update us on Brittany’s current dosage and also link us to the trial ?

I sure apologize if I overlooked the above info .

Hoping today got you some answers ,as well as Brittany feeling better.

Love
Debbie

[Bonni Hess]

Dear Debbie,
In response to your questions about Brittany's Cediranib treatment, she is currently taking 30 mg. of Cediranib once a day, as she has been for the past eight years and nine months since her initial Trial dosage of 45 mg. was reduced due to severe intolerable negative side effects. The Trial that Brittany has been participating in for the past nine years is a combination Cediranib/Rifampicin Trial that has been closed for enrollment ever since she was the last patient accepted into the Trial in April 2009, and for which Brittany is now the sole surviving/remaining patient on the Trial at Cross Cancer Institute (CCI) in Edmonton, Alberta. The Trial's purpose was to test Cediranib in combination with Rifampicin (a tuberculosis medication) to try to determine if Cediranib would increase the effect of the Rifampicin for tuberculosis patients. Obviously, we weren't interested in Rifampicin as a treatment for Brittany's ASPS situation, but at the time, enrolling her in the combination Trial was the only way that we could access and obtain the promising new Cediranib treatment for her because the Cediranib Trial for ASPS patients at the Royal Marsden in England had been closed for further enrollment, the NIH ASPS Cediranib Trial had not yet begun, and our extensive research could not locate Cediranib treatment anywhere in the USA or internationally. Brittany only received the Rifampicin for a two week period during the first month of the Trial, and then she has continued to receive only the Cediranib from that time until the present. The Trial enrolled patients with many different types of cancer, and if I recall correctly, Brittany was the only ASPS patient in the Cediranib/Rifampicin Trial at CCI. I Hope that this information helps to answer your questions.
We are still awaiting neurological testing referral information from Dr. Rockhill for Brittany's recent concerning neurological symptoms, and I will update this Forum when we have more information and results to share. Take care dear Debbie.
With special caring thoughts and continued Hope,
Bonni

[D.ap]

Bonni

Thank you for the clarification and certainly the information .

The cediranib was used to facilitate the Rifampicin, to patients lungs who would of needed it to treat TB? Or was the trial specific to cancers ?

Did Brittany have immediate results of lung / systemic tumor reduction ?

The pancreas was the reason you all had moved from surgeries / ablations , to a systemic Med , for treatment of the found tumors , correct ?

It’s quite amazing the results of reduced tumor
reductions after beginning the trial 9 plus years ago.

With the advent of targeted therapies , it will be interesting to know the results of the doxorubicin / pembro trial with ASPS patients .
Hope you are able to get info before the weekend so you all can move forward in trying to resolve Brittany’s health problems sooner , than later .

All my love
Debbie

[D.ap]

Bonni,

Been reading on tki usage and some possible numbness producing side effect ..
Does the numbness happen all the way head to foot ?
Or from the hip down?

[Bonni Hess]

Dear ASPS Community Friends,
After delayed scans due to Brittany having concerningly developed severe vomiting and heartbreakingly being MUCH too sick to fly to Edmonton for her scheduled four month chest/abdominal/pelvic Clinical Trial scans on May 11th, we were able to have her scans done in Seattle at the University of Washington on May 25th and just finally received the results yesterday which VERY thankfully showed no new chest/abdominal/pelvic mets and continued disease stability. Additionally, Brittany had her full body bone scan done on Wednesday, June 6th and the scan also showed no new bone mets for which we are of course VERY thankful. Although Brittany usually has her full body bone scan done once a year, it has been three years since her last one was done in 2015, and her oncologist was still reluctant/opposed to order one this year due to concerns about the significant amount of radiation exposure that Brittany's body has received during the past almost 17 years of her ASPS battle. It is of course a very difficult dilemma, but we strongly requested and insisted that the bone scan be done because we feel that the critical importance of finding any possible mets at the smallest most treatable size outweighs the risk of radiation exposure which we are painfully aware of. We have made as many efforts as possible to reduce Brittany's radiation exposure by changing from her previous numerous years of abdominal/pelvic CT scans to abdominal/pelvic MRI's for the past couple of years, and extending her chest/abdominal/pelvic scans to every four months and her brain/spinal MRI's to now every six months, unless she becomes symptomatic and requires immediate scans to try to determine the cause of the symptoms. Thankfully Brittany's sudden onset of severe vomiting resolved after a few days, but we are still unsure of what may have caused it unless it was just a case of the normal stomach flu or some other benign cause unrelated to her ASPS or her Cediranib treatment. We wonder if she may have developed a toxic buildup of the Cediranib in her body after 9 years of taking the drug, but for now she seems to be tolerating it with no further severe vomiting episodes so she will continue on her 30 mg. daily dosage. The difficult roller coaster of fighting this insidious disease continues, as well as our continued Hope that some day VERY soon a permanent successful treatment and cure will be found. In the meantime, Brittany's regular chest/abdominal/pelvic Clinical Trial scans will be done in Edmonton on July 5th and I will update this Board with the results as soon as possible. Take care everyone, have a safe and beautiful Summer, and keep in touch as you are able.
With a happy heart filled with great relief and deepest gratitude for Brittany's VERY GOOD scan results and her continued disease stability, and with special caring thoughts and continued Hope,
Bonni

[D.ap]

Bonni and family
So wonderful to hear of good scan results !
You all have a beautiful summer as well.

Love
Debbie and family

[ntran727]

So happy to hear of Brittany's continued disease stability. Is Brittany still having the same and as severe of side effects that she was experiencing from Cediranib in the beginning? Has there been thought of reducing the dose to see if it would still provide stability while minimizing the side effects? After so many years on the medication, one has to wonder what potential toxicity there are to the body. Best wishes and have a great summer!

[Bonni Hess]

Dear ASPS Community Friends,
We celebrated the 4th of July in Canada this year since Brittany's re-scheduled four month Clinical Trial chest/abdominal/pelvic scans were scheduled at Cross Cancer Institute in Edmonton, Alberta on July 5th. Having VERY thankfully and relievingly received VERY GOOD scan results on July 6th which showed continued sustained disease stability and no new mets, we continue to celebrate with greatest joy, deepest gratitude, and strengthened Hope, Brittany's now nine years and three months of disease stability since beginning her Cediranib Clinical Trial in April 2009. Brittany continues to tolerate her daily 30 mg. Cediranib dosage and the ongoing negative side effects, but unrelated to the Cediranib, she is heartbreakingly experiencing increased right side and extremity weakness and numbness as the result of her major laminectomy to remove a large aggressively growing spinal met ten years ago which resulted in the removal of a third of each of seven cervical and thoracic vertebrae significantly reducing her neck and back support and leaving her with severe chronic spinal pain. As per the recent consultation with an oncological neurosurgeon in Seattle, the only currently available treatment seems to be an extremely dangerous and major spinal surgery which would involve Brittany having to discontinue her Cediranib for two months pre-op and two months post-op to prevent dangerous Cediranib related hemorrhage, surgically breaking 11 vertebrae, inserting immobilizing screws and pins to straighten and stabilize Brittany's neck and spine, and a lengthy recovery with no guarantee of post-op spinal pain relief for Brittany. We will of course seek several more surgical and treatment opinions, and weigh all of the options very carefully. We strongly feel that the known risk of possible disease progression from discontinuing the Cediranib, and the fact that Brittany could not return to receiving Cediranib if she discontinues it since it is still a Clinical Trial drug, are significantly concerning negative factors in the proposed spinal surgery decision, and both Dr. Sawyer whose opinion we highly respect, and the spinal neurosurgeon agree. However, the prospect of Brittany continuing to Live with such immense relentless spinal pain which is unrelieved by high dosage pain meds, physical therapy, and the innumerous other treatment options that we and Brittany's Pain Team have explored and pursued, combined with her increasingly concerning and debilitating spinal related right side and extremity numbness and weakness, are also significant considerations, and ultimately the decision will be Brittany's to make. Damn this insidious disease and all of the pain and suffering that it and the treatments to fight it cause!! For now, we move forward with the battle, deeply grateful for Brittany's long term sustained disease stability, continuing to aggressively research, and Hoping that someday VERY soon an effective permanent treatment and cure will be found. Take care everyone, have a beautiful Summer, and keep in touch with the Board as you are able.
With a heart filled with deepest gratitude and greatest relief and joy for Brittany's VERY GOOD scan results, and with special caring thoughts and continued Hope,
Bonni

[D.ap]

Bonni ,

So very very happy for scan results ! : )
Praying for Brittany and pain relief .

Love

[Olga]

Bonni - it is a serious situation and needs to be thoroughly investigated - get a few second opinion re possible repair options. Sounds fairly destructive, the repair option...may be someone has got some technically advanced easier solution.

[arojussi]

So sorry to hear about pain problem. I really wish I would have more positive information, but unfortunately what I heard of surgical approach for spine related pain and dysfunction usually isnt very helpfull. In these situations patient is in untolerable pain, so surgery is tried, but after surgery pains are even worse. Of course Brittany`s case can be different and spine isnt my area of knowledge. Painmeds and physical therapy obviosly arent sufficient for pain relief, but changes of surgery helping arent high. Continuing ediranib after surgery should be possible. Yes you can be kicked out of trial, but science supporting Cediranib in asps is clear, so Astrazeneca will most likely provide more cediranib as it would be great adverisement, but definetly figure these things out before surgery.

[arojussi]

Of course if situation in the spine is lifetreatening it need to be dealt with.