Brittany on Cediranib trial Phase 1 in Edmonton

[Bonni Hess]

Thank you dear friends for sharing the happiness of Brittany's very encouraging scan results with so much special joy and caring. Your faithful support, encouragement, and treasured friendship have truly strengthened us on this very challenging journey, and we are so deeply grateful to all of you who have reached out to us with so much thoughtfulness, kindness, and goodness. Together we WILL win this battle!
With warm hugs, deepest gratitude, special caring thoughts and friendship, and strengthened Hope,
Bonni

[Bonni Hess]

Thank you dear friends for sharing the happiness of Brittany's very encouraging scan results with so much special joy and caring. Your faithful support, encouragement, and treasured friendship have truly strengthened us on this very challenging journey, and we are so deeply grateful to all of you who have reached out to us with so much thoughtfulness, kindness, and goodness. Together we WILL win this battle!
With warm hugs, deepest gratitude, special caring thoughts and friendship, and strengthened Hope,
Bonni

[Ivan]

I am extremely happy that after everything Brittany has been through, something is finally working well

[Bonni Hess]

Dear ASPS Community Friends,
Brittany has recently begun to experience some hand, foot, and arm numbness, When we contacted the Cediranib Clinical Trial nurse at Cross Cancer Institute (CCI) in Edmonton regarding these concerning new symptoms, she said that this is not a symptom which they have as yet observed in other patients who have participated in the Cediranib Clinical Trial there, so she advised us to contact Brittany's primary oncologist here in Seattle for an evaluation. Brittany' had an appointment with her oncologist, Dr. Eve Rodler, on Tuesday, but Dr. Rodler was unable to determine a cause of the numbness and is quite perplexed by it. Just to be safe, Dr. Rodler scheduled a brain MRI and brain MRA for Brittany yesterday to determine if there are any new brain mets, tumor reoccurence, edema, or intracranial hemorrhaging. VERY thankfully, the scans showed none of these, so we are assuming that the numbness must be somehow related to the Cediranib. It is our understanding that Brittany is now the patient who has remained on the Cediranib treatment the longest of all of the patients at CCI who were participating in the Cediranib Clinical Trial (she is the only ASPS patient enrolled since this particular Trial was open to patients with any kind of cancer), so we are wondering if the numbness is a symptom that develops when a patient has been on the medication for a longer period of time as Brittany has having now been on it almost seven months. If there are any of the patients on this Board who have undergone treatment with Cediranib and have experienced numbness of the extremities, or if anyone has any knowledge about this as a side effect of Cediranib treatment, we would deeply appreciate your sharing the information with us. As always, Life with ASPS remains a roller coaster of physical and emotional ups and downs with ever present concerns and fears, but we continue to hold VERY tight to Hope that the Cediranib will continue to stabilize the progression of Brittany's disease and to shrink/destroy her remaining tumors, and that she will continue to be able to tolerate the 30 mg dosage without suffering too many negative side effects. Please write if you have any information/experience to share regarding extremity numbness as a side effect of Cediranib treatment, take care everyone, and have a most beautiful and abundantly blessed Thanksgiving season.
With special caring thoughts and continued Hope,
Bonni

[Bonni Hess]

Dear ASPS Community Friends,
I Hope that this finds you all having enjoyed a wonderful and relaxing Thanksgiving shared together with family and friends. Heartbreakingly, Brittany has been extremely sick this past week with uncontrolled severe nausea and vomiting which required four emergency room treatments and a two day hospitalization to try to resolve the vomiting. She was just discharged from the hospital this morning, and we are Hoping that the vomiting is now completely resolved. We are assuming that the vomiting is caused by the Cediranib, so as per the Clinical Trial oncologist's advice, Brittany discontinued the Cediranib when the vomiting began last Monday, and she will now resume taking it tomorrow, in Hopes that her body has had enough of a break from the medication. Has anyone else on this Board who is taking Cediranib had this type of reoccurring severe vomiting episodes every few months? It is a very concerning and debilitating side effect of the medication, and we don't know how much longer Brittany's body can endure the toll that it takes on her, but at this point we also don't know what other treatment option we have that has shown as much success in dramatically shrinking tumors and stabilizing the disease progression, and that also crosses the blood brain barriar to Hopefully prevent new tumors. Thankfully, Brittany's troublesome hand, foot, and arm numbness has mostly dissipated since she has been off of the Cediranib the past six days, so it appears that the numbness is related to the Cediranib. I will keep the Board updated. In the meantime, please take care everyone and enjoy all of the special beauty and joy of the approaching Holiday season.
With special caring thoughts and continued Hope,
Bonni

[Fictional]

Keeping you all in our prayers Brittany and family. Cediranib does have a pretty long half-life and it does not seem to have as strong a rebound effect as some of the other TKIs. Perhaps this can help set you mind at ease if one has to take some breaks from the medication.

You've probably tried everything, but we've heard Zofran wafers for nausea are very good.

'F'

[Bonni Hess]

Thank you 'F',
We are Hoping that eventually an optimum Cediranib dosage schedule will be determined that prevents the medication from becoming so toxic in the body that it creates such severe and debilitating side effects. Discontinuing the Cediranib for five days has thankfully alleviated Brittany's extremity numbness, muscle pain and weakness, diahrrea, nausea, and vomiting thus far. We Hope that her body will now be able to tolerate resuming taking the Cediarnib, and that having discontinued it for five days will not have reduced the effectiveness of the treatment. Thank you for your suggestion about the Zofran wafers which we are not familiar with. Brittany does take oral Zofran and she also uses Compazine suppositories when she becomes nauseated and the vomiting begins, but unfortunately neither of them are sufficient to control the vomiting which is why she has to be treated in the emergency room or hospitalized in order to receive IV fluids, Zofran, Raglan, and Ativan. Take care 'F'.
With deepest gratitude for your special caring and valued shared information, and with continued Hope,
Bonni

[Fictional]

Zofran wafers are totally the way to go. I think they come in 8 mg. If you take a pill - it takes longer to absorb and you might throw it up...the wafers dissolve on your tongue. They're a lot stronger than compazine. Many people are great fans of these wafers. They are $$, so sometimes onc's don't prescribe them as a first line... but stopping the medication and getting admitted to the hospital is a lot worse!

Also when she's not in the throes of vomiting, Gatorade or some other sportsade drink may keep Brittany hydrated better than drinking regular water. Years ago when Brock had some dreadful diarrheal thing, he really didn't want to go to the ER and get IVF. He sucked down some pedialyte popsicles and said it was surprisingly 'not bad' tasting...

[Fictional]

p.s. another thing I thought of - I think you mentioned numbness in hands and feet. Nearly all TKI inhibitors will cause hands and feet syndrome if taken long enough. I got the feeling this is what led Clare to quit Cediranib.

It's possible the numb feeling is early hands and feet. There are a variety of online articles that talk about this: http://theoncologist.alphamedpress.org/ ... /13/9/1001

'K' developed tender feet at one time on Sutent - but we treated with 'cow cream' aka Udder smooth (http://www.uddercream.com/). We found it at our local pharmacy inside of Albertson's. Most pharmacists know about it. Doctors recommend it for hand-foot that develops from chemotherapy .It help keeping hands and feet humidified and the cream helps lock in moisture. Some people wear socks and cotton gloves to bed with the cream on and notice it feels better in the morning.

[Bonni Hess]

Thank you for the additional information 'F'. Brittany has also experienced the painful hand and foot syndrome with very tender to the touch areas and peeling and calluses on her hands and feet, but the numbness that she experienced is different. Her extremities become so numb that she literally can't feel them, not like the sensation of them going to sleep which feels more like tingling. Her foot was so numb that she couldn't feel her foot when she was going down the stairs, and without any feeling she couldn't feel where to put her foot on the stair and concerningly fell down the stairs. Thankfully, she wasn't injured in the fall. Since having discontinued the medication for five days due to the vomiting, the numbness has gone away, but heartbreakingly her severe joint pain continues. I had forgotten, but Brittany reminded me that she did take the Zofran wafers during the time that she was experiencing brain swelling headaches from her brain tumors five years ago, but she had better insurance at that time which covered the wafers which were extremely expensive. Thank you again dear 'F' for all of your special caring and much appreciated sharing.
With special caring thoughts and continued Hope,
Bonni

[Bonni Hess]

Dear ASPS Community Friends,
We just returned from Brittany's eight month Cediranib Clinical Trial status scans in Edmonton having received continued
VERY GOOD NEWS!! . With a twinkle in his eyes and a merry grin, Brittany's excellent and very dedicated Clinical Trial oncologist, Dr./ "Santa" Sawyer, excitedly delivered our Christmas gift a week early with the WONDERFUL!! news that Brittany's Thursday's chest/abdominal/pelvic CT's showed continued signifcant shrinkage of her multiple lung mets and her inoperable pancreatic tumor, and total disappearance of some of her lung mets! Dr. Sawyer is perplexed as to why during the first four months of Brittany's Cediranib treatment she had only disease stability with very little tumor shrinkage, and now she is having such dramatic tumor shrinkage and necrosis. Apparently it is more typical of Cediranib treatment for the major tumor shrinkage to occur at the very beginning of the treatment, and then for it to plateau, but needless to say, we are all extremely happy and encouraged by the very positive treatment response even though it took a little longer to occur. We go forward into the Holidays and the New Year with VERY happy hearts and greatly strengthened Hope, and with special wishes for all of you that your Holiday season and the coming year will be blessed with abundant joy, peace, good health, and the miracle of healing. Please take care everyone, keep in touch with the Board, and update as you are able.
With a heart filled with special happiness, caring thoughts, Happy Holidays and New Year best wishes, and continued Hope,
Bonni

[Fictional]

Hallelujah, and Amen!

Blessings to Brittany and her whole family. Merry Christmas!!

[Olga]

Bonni - I am so glad to hear the news, I hope that side effects that Brittany was having are not that significant now, is Brittany on the reduced dose? May be it works the same good as the higher dose but with the less toxicity? It would have been good if somehow people on other trials knew that such a significant response can occur later in a treatment and that if there is no response in the beginning it still makes a sense to stay on it, may be Dr.Sawyer wants to write an article about the delayed dramatic response to cediranib in ASPS...

[Bonni Hess]

Dear 'F' and Olga,
Thank you for sharing our good news wth so much special joy and caring. Brittany is continuing on the 30 mg daily dosage which was reduced from 45 mg following her severe vomiting and hospitalization episode in August. As I had previously updated, she experienced another severe bout of vomiting requiring hospitalization in late November, but after discontinuing the medication for five days, she was able to resume taking it again, and thankfully thus far is tolerating it with the continuing side effects of joint pain, acid reflux, fatigue, mouth sensitivity, and hand and foot syndrome. Since her brief break from the medication in November, she has thankfully not yet had a return of the extremity numbness which she had been experiencing. It seems that every couple of months, her body develops an intolerance to the medication which requires a four to five day break. If we could identify the point at which this occurs, we could have her discontinue the medication for a few days to try to prevent the severe episodes of vomiting and subsequent hospitalization, but the onset of the vomiting seems to come without any warning. Hopefully, this issue will be able to be resolved and a different dosage schedule to prevent the toxic buildup of the medication can be established as more patients participate in the Cediranib Clinical Trials and more data becomes available. I would like to encourage all of the ASPS Community patients participating in the Cediranib Clinical Trials to be active in sharing their treatment experiences, information, and results so that we can all learn from them. Information sharing, networking, and communication with each other remain one of our most powerful weapons in fighting this extremely rare, very challenging, and poorly understood disease.
With special caring thoughts and continued Hope,
Bonni

[Arch]

Dear Bonni,

This is wonderful news! Wish you and your family a Merry Christmas and happy holidays.

Regards
Arch