Brittany on Cediranib trial Phase 1 in Edmonton

[Bonni Hess]

Dear Arch,
Thank you for your special kindness and good wishes. My best wishes are also with you, Sree, and your family for a very happy Holiday season. Now that the NIH Cediranib Trial has re-opened for enrollment following the temporary closure for interim results, will Sree be pursuing it as a possible treatment option?
With special caring thoughts and continued Hope,
Bonni

[Arch]

Dear Bonni,

We are considering the cediranib trial incase the next CT scan(due in Jan) shows progression of Sree's lung mets. In the last scan the biggest met was around
1 cm and there were many smaller ones, we had sent Sree's medical records and slides to NIH and he is eligible for the trial. We didn't want to start a systemic treatment immediately if the mets stabilise on their own after the laser surgeries, which unfortunately has not happened in his case(we'll anyway wait to see his next scan also before we decide that).

Sree is otherwise fine, he works full time and we are worried that he may not feel so well once we start cediranib and then there are all those unanswered questions about the effect of the drug on small mets, how long will he take it, how soon will resistance develop against the drug and what happens after that.
I know that all of us have these doubts and that's why there's this trial. I did have an email communication from Prof.Ian Judson in UK, he thinks that cediranib may stabilise even the smaller mets and Sree could give it a try. 'F''s observation that 'K''s smaller mets were negative for VEGF while the bigger tumors were positive, also gets us thinking if we should try cediranib now or should we keep that for later.

Does Brittany go to work these days? I know the side effects could be different for everyone, but that's something that Sree is most worried about.

Arch

[Bonni Hess]

Hello again Arch,
Thank you for the thoughtful update on Sree's current status and treatment considerations. I am so grateful that he is feeling well and able to work full time. My special thoughts and best wishes will be with him when he has his upcoming January scans, and I will be holding very tight to Hope for results which show disease stabilization and shrinkage of his lung mets. I know that it is very difficult and confusing to know which treatment approach to take, but I am grateful that Sree is eligible for the NIH Cediranib Trial if that option needs to be considered. Regarding your question about Brittany working, she is heartbreakingly currently unable to work due to the combination of her chronic debilitating spinal pain from her two major spinal tumor resections, the negative side effects of the Cediranib medication, and her Clinical Trial schedule which requires that she commute back and forth to Edmonton for Clincal visits once a month. Although her physical condition and her treatment side effects and schedule prevent her from working right now, it is our great Hope that someday she will be able to return to her work in the nursing field. In the meantime, we are deeply grateful for the strengthened Hope that Cediranib has provided because although the side effects of the Cediranib can be difficult, it is the only systemic treatment thus far that has provided disease stabilization and tumor shrinkage and necrosis for Brittany. Take care dear Arch and keep this Board updated as you are able.
With special caring thoughts, Happy Holiday best wishes, and continued Hope,
Bonni

[Brittany Hess]

Wow! I definitely got the best Christmas present I could've possibly asked for. 8 years of fighting this cancer, and when I say fighting, I mean it! I've worked my ass off on kicking it's ass! Lol! I never let my guard down, and I never let this damned cancer take the best of me. I'm not a robot, so I obviously have my bad days...and really lately, it seems that i've had more bad than good...but when the overall turns out so well...the agonizing pain that I endure on a daily basis, the weakness, the falling down, the extreme exhaustion, the inability to live a "normal" life, the being scared, the waiting process, the extreme inconvenience of flying up to Canada on a monthly basis (every other month by myself...I love the independence, but I miss my family time ), there are just so many things I could say, the list just goes on...I don't need to say it all...we all have our pains, physically and mentally, so I'm not just gonna sit here and bitch and moan, cuz we all have our own problems and no one ever wants to here another person complain..it's all comparing apples to oranges,and the bottom line is, I wish none of us had any of this damned pain, but wake up Brittany, you have cancer, you're most likely gonna have pain...,it ain't a cake walk, that's for sure...BUT...with all that said...all that I have suffered, all the tears I have shed, all the hours upon hours of waiting...it's finally paying off. My cancer is shrinking. It's finally shrinking! And when we got the great news a couple months ago...as much as I wanted to believe it was great news...I had to be hesitant...great news? and Brittany?...same sentence???...not when it comes to this cancer!!!...but hell, looks like things are changing for me... as I've said from the beginning...I WILL BEAT THIS BASTARD! I will LIVE a LONG LIFE filled with happy memories and joyous times! and guess what?...it's not just a dream for me anymore...it's the real thing! Hang in there guys...the cure has arrived...and if this isn't the full on cure...just something to stop the growth in the meantime...fine with me...to see my tumors shrinking and disappearing after working my ass off, 23surgeries, 3treatments, radiation, etc...I think I've deserved to finally get some good news. And what the best part is. This isn't just my life alone. This means for all of us now and all the future patients. Because of being a human lab rat, I may be helping to save lives! This is awesome! My mama keeps you up to date on everything else, I just really wanted to get on here personally and tell you how freakin' happy I am, and tell you that I had an incredible Christmas! My boyfriend and I recently bought a house and this year we hosted Christmas and it was awesome!!! I hope you all had a wonderful time and were able to be as happy and healthy as possible. Just remember...I feel like shit 95% of the time...but right now, I'm living, I'm breathing, and my tumors are shrinking. The pain I hope will eventually go away, but in the interim, I've got the best thing possible going for me~! Good luck to all of you and know that I'm constantly thinking of you all. Even if I'm not updating or seem kinda MIA, my mom keeps my up to date on an hourly basis, and I am here for all of you, all of the time. If you ever need a friend, I'm here.

[Bonni Hess]

Dear ASPS Community Friends,
I forgot to mention that at Brittany's December Clinical Trial visit, Dr. Sawyer said that Cediranib can cause deterioration of the muscles, so that it is very important to try to exercise to maintain and strengthen the muscles. Has anyone else receiving Cediranib treatment been advised about this important issue? Brittany is now working with her physical therapist, as well as on her own to exercise as much as she is able within the limitations imposed by her spinal resection pain and the fatigue and joint pain side effects of the Cediranib. Take care everyone. I Hope that you are all enjoying a very happy and healthy start to the New Year.
With special caring thoughts and continued Hope,
Bonni

[DottyW]

Brittany,
That is such great news. You have really been down a rocky path. It's great to see you having some success. In reading your post, you sound so much like Jordanne. Hopefully we will be able to meet soon. We were planning to go back to Bethesda to begin the trial there on the 19th but they have put it on temporary hold while they investigate some adverse affects that a couple of patients have had.
Your mom mentioned that you have had quite a bit of spine pain. I know you can't have any surgical procedures at this time, but Jordanne is doing great with a spinal cord stimulator that she had implanted on the 28th. She had it done at the UW medical center by Dr. Gofeld, a pain specialist. We are really excited about this and she is able to finally start getting back into life and is able to do her physical therapy now.
We also had one of the best Chrismas's we've had. Very peaceful and simple. This dreaded disease sure makes you keep your priorities in perspective. We had 2 other cancer patients at our work Christmas party, so it became a celebration of survival. One of the girls is a young mom with cinovial (sp?) sarcoma, very similar in rarity to ASPS. Jordanne was very inspired by her.
We keep you in our prayers and continue to hope we will find the time to meet with you and your mom. In the meantime keep your head up and your fighting spirit.
Dotty

[Bonni Hess]

Dear ASPS Community Friends,
Brittany had her required monthly Cediranib Clinical Trial clinic visit, blood work, and ECG at Cross Cancer Institute in Edmonton this morning, and thankfully the tests showed that everything is fine so she can continue on the medication. Brittany's excellent and extremely knowledgeable Clinical Trial oncologist, Dr. Michael Sawyer, said that he wasn't aware that the Cediranib Trial at NIH had been temporarily closed again, so this is an indication to us that whatever the concerns are regarding some negative side effects experienced by a couple of the NIH Trial patients, they have not been conveyed to Dr Sawyer by Astra Zeneca, and therefore Hopefully this means that the drug is safe for continued use in Trial. We will continue to closely follow the status of the NIH Trial closure, and will be anxiously awaiting any further information that becomes available regarding this issue. Take care everyone.
With special caring thoughts and continued Hope,
Bonni

[Bonni Hess]

Dear ASPS Community Friends,
Valentine's Day came early for us . Thankfully I have continued GOOD NEWS!! and strengthened Hope to share from Brittany's ten month Clinical Trial status scan results which we received yesterday ( February 12th) during her Clinic visit in Edmonton. The radiologist report said that there are NO NEW TUMORS!! , the three lung mets which are being followed for the Trial are NO LONGER VISIBLE!!, and the pancreatic met is "thinner". Dr. Sawyer was not able to be present at the appointment because he was in Florida to speak at a medical conference, but we met with one of his associates to review and discuss the radiologist report and the scans. Because no current dimensions for the pancreatic met were given on the report, we have requested that this information be obtained and sent to us so that we can better determine the current size of the tumor and the amount of shrinkage from the December 17th scans. Hopefully we will receive that additional information sometime early next week. Thankfully Brittany's blood work, ECG, blood pressure, and weight all continue to be fine. We are EXTREMELY happy and encouraged by the continued stabilization of the disease and tumor shrinkage/necrosis, and are holding VERY tight to Hope for Brittany's continued successful response to the treatment. Because Brittany thankfully did not have any brain or spinal mets when she began the Clinical Trial last April, she is not being followed by the Trial with brain and spinal MRI's, so we schedule these to be done in Seattle every three months through her primary oncologist. She has a brain and spinal MRI scheduled for March 2nd which will Hopefully show no new tumors in those areas. As always, I will update the Board with those scan results as soon as I am able. Brittany is experiencing increased fatigue and diahrrea, but thankfully she has not yet had another severe vomiting episode. Although the side effects of the medication are difficult, Brittany courageously tolerates them and continues to move forward with actively Living her Life. We are all EXTREMELY grateful for the stabilization and tumor shrinkage which the Cediranib has provided during the past ten months of her treatment, and we are VERY Hopeful that all of the ASPS patients who are participating in the Cediranib Clinical Trial will have a VERY successful and sustained response to their treatment. We Hope too that everyone participating in this very promising new treatment will keep the Board updated with information about their Cediranib experience and results. In the meantime, please take care everyone and have a MOST Happy Valentine's Day.
With a happy heart, special caring thoughts, and continued Hope,
Bonni

[Fictional]

HOORAY!! GREAT news!

Happy Valentine's Day!

[Amanda]

Bonnie I am so happy to hear this!!!!

YAY!!!

I am glad she is doing so well with the side effecta and this brings so much hope to myself and others!

In healing hopes for all!

Amanda

[DottyW]

It was so exciting to hear your news on Brittany!
What a relief to have the results and have them be so good. These results just continue to encourage the rest of us as we are just getting started on this journey. Although Jordanne is continuing to have some side affects, mainly fatigue and occasional bouts of diarhea (sp?) she continues to be as positive as she can. It makes all of the other annoyances of living our daily lives seem so trivial.
Brittany and your family are always in our prayers!
Stay strong,
Dotty

[wendik]

OH Bonni!!!! Matt and I are so happy for you both!!!
This news is SO encouraging !!!

Wendy

[Bonni Hess]

Dear ASPS Community Friends,
Thank you to everyone who wrote to share the special joy of Brittany's recent very encouraging scan results with so much special happiness, kindness, and caring. We are so deeply grateful for the strengthening support that this Forum provides for us.
Heartbreakingly, Brittany experienced her fourth episode of Cediranib related severe uncontrollable vomiting beginning last Saturday and she was hospitalized on Monday to receive IV anti-nausea meds of Zofran, Raglan, and Dilautid and re-hydration fluids. Thankfully the vomiting is now under control, Brittany is feeling much better, she was discharged from the hospital yesterday, and she plans to resume the Cediranib tonight after the five day break to get rid of the toxic buildup of the medication in her body. There seems to be a point at which her body can no longer tolerate the medication and requires a short break from it. It seems to occur about every two to four months, but because she doesn't have any symptoms of gradually increasing nausea before the sudden and severe onset of the vomiting begins, we have not yet been able to determine the exact time frame so that she can try to avoid an episode with a preventative approach of discontinuing the medication for a few days. Despite all that Brittany's body has been through with the very difficult episodes of severe vomiting, her invincible spirit, incredible positive attitude, and undeterred determination to keep fighting this insidious disease remain strong. I Hope that everyone who is particpating in the Cediranib Trial will keep this Board updated with their side effects experienced during the treatment, and if severe vomiting is experienced, perhaps through the shared anecdotal information a pattern can be determined to provide guidelines for the optimum dosage schedule to try to prevent the cycle of vomiting. Please take care everyone, and best wishes for all of the patients who are receiving Cediranib treatment for a very successful, long term, and sustained treatment response.
With special caring thoughts and continued Hope,
Bonni

[Arch]

Dear Bonni,

Would Brittany's doctors consider giving her a 4-5 days break from cediranib every 2 months to prevent such an episode in the future ?
I don't know if such things are allowed when you are on a trial but maybe you could check with them since you can see a pattern.
We will keep this forum updated on Sree's side effects and would also see if we could encourage other patients coming to NCI to share their story here.
Take care and wish Brittany a quick recovery. Hope she can again start taking her medicine today as planned.

Arch

[Bonni Hess]

Thank you Arch. We have certainly considered this approach of having a scheduled break from the medication, and now that Brittany has had this fourth severe vomiting episode and there seems to definitely be a pattern of toxic build-up, we will discuss with Dr. Sawyer the possibility within the Clinical Trial protocol of pre-emptively stopping the Cediranib for a few days every couple of months. However we do have concerns/fears that periodically stopping the medication might somehow interfere with the effectiveness of the Cediranib and allow the disease to progress, although she has periodically been forced to stop the medication because of the severe vomiting episodes anyway. There are still so many unknowns with this pioneering medication that it is still experimental and optimum dosage guidelines still need to be determined and established. I will look forward to your updates on Sree's side effects, and Hope that they will be very few and very tolerable. It would be wonderful if you could encourage other ASPS patients who you meet at NIH who are participating in the Cediranib Trial to participate on this Board and share their Cediranib treatment experiences and results. Because of HIPA patient privacy rules and the practice of Clinical Trials to not release and publish Trial data until the Trial is completed which is usually a couple of years, it is only through the patient anecdotal treatment information shared here that we are able to know about individual treatment experiences and the success or failure of the treatment which is vitally important. Take care Arch and have a good weekend.
With special caring thoughts and continued Hope,
Bonni