Clare experience with Cediranib

[Olga]

This is a repost done by me (Olga) about Clare experience with cediranib from the information that she shared with me in the e-mail correspondence. Clare was one of the first ASPS patients to start cediranib trial with Pf.Judson and her case is presented in his report (and her big lung met dramatic shrinkage is documented by the CT scan presented in the report) in UK along with Paul Meyers - thanks guys for keeping us posted, it is a very important information for us.

========Clare experience on a cediranib trial=====================================
1. The effect of a drug:

The big shrinkage that I had was with the initial strong dose within the first 6-8 weeks. It did do very well my big right tumour was almost ten cm and is now only four.
They soon began to realize that I could not tolerate the high dose and we gradually began to continue dropping. However, the tumours did continue to get smaller, including my smaller mets on my left lung.
My first off drug scan scan in last August 2008, having stopped the drug at the start of July 2008, has shown that the tumours were slightly smaller. 10 month later in April 2009 it is all still stable. So there has been no growth since I finished trial last summer. I'm also generally feeling much fitter in myself and am jogging better in terms of both breathing and muscle/bone recovery from treatment.

2. Side effects:

I started in Sept 07 on the high dose of 45mg if I remember correctly. On this I had several initial effects: initially diarrhoea, with weight loss,
then I began to get sores deep in my throat, more towards my neck. Also the skin on the soles of my feet and some on my hands began to burn and come
off. Only small patches, approx 4cm, but it was very painful to walk. This had the effect of me having to walk on the outside edges of my feet, which
in turn stressed my knee joints.
Because of throat problem which caused me quite a few sleepless nights, tears etc I had to change my diet, to lots of milk, cold custard until April
this year. So I began to pile on the weight, causing further stress to my joints
The drug slows ones metabolism via thyroid effect, I was diagnosed hypothyrodic the same year I was diagnosed with asps, when I was 29, so my
weight overall had increased 3 and half stone - not good for legs!
I went off drug as my legs were getting weak - knees, ankles etc I was able to walk but did have the odd collapse, though I was still able to
survive the school day.
I don't think I would be allow to resume the drug as it was part of a trial and I am beyond the period where you are allowed to restart.

Other people may well be different to me if they aren't hypothyrodic initially as I am. I met another asps patient with much smaller mets, less than cm. Hers have become smaller, but not so dramatic as mine, and she has had no growth like me. Like me, she also decided to give up the drug as she was getting very tired and it was affecting the quality of her life.

My legs have now recovered from the drug effects. I just did lots of walking and cycling in August, being careful not to run. By mid-September I was able
to jog again, bearing in mind I was heavier. I have managed to lose nearly 2 stone in weight and feel great, back to full of energy and most importantly
my breathing is clear, whereas before the drug the right tumour nearly 10cm was restricting my breathing. Though this year has been tough, tiring, and
rather wearing, it's all behind me now and I am greatly benefiting from it.
I managed to keep working throughout treatment, so it can't be that bad!
I personally feel it was worth it, but I had to give it up to appreciate the benefits.

[Amanda]

Hello Olga,
Thank you for posting this! I have high hopes about this drug and it always makes me feel better to hear that there maybe some thing out there that will help all of us. Thank you for making me smile again

Wishes for a cure and hopes of healing for all*

Amanda R

[Bonni Hess]

Dear ASPS Community Friends,
I received a thoughtful e-mail update from Clare with VERY GOOD NEWS!! from her recent February scans! The excerpt from her e-mail said that "my lastest hosp visit showed no new growth and it's over a year and a half since I stopped taking recentin." (Recentin is another name for Cediranib) This is extremely encouraging given the concerns about possible rebound and rapid disease progression when Cediranib is discontinued. I am deeply sharing the special joy and strengthened Hope of Clare's wonderful scan results, am very grateful for her continued gracious sharing, and am VERY Hopeful that she will have continued and sustained stabilization of her disease.
With special caring thoughts and continued Hope,
Bonni

[Bonni Hess]

Dear ASPS Community Friends,
Having been in recent communication with Clare, and with her permission, I am sharing the following excerpts from her e-mail update regarding her current situation and new treatment:
"I did find out I had had slight growth in July, only small. In September I started on a drug called axitinib, very similar to recentin
(Cediranib). All is stable from recent scan. Side effects are similar to recentin but not as severe. I have had mucosis deep in my throat like last time and had to have a break and am on a reduced dose as of a week ago. Still happily and busily teaching. I know there will be a recentin trial specifically for asps hopefully, as axitinib hasn't had the drastic wow factor, but perhaps it will keep disease stable and be more manageable long term. Might be useful to note that the area that cediranib shrunk which was almost 10 cm in diameter has no regrowth at all. It's a new area only about 2 cm but unfortunately quite near the opening of the main right bronchus. In the summer I could feel it depressing my breathing if I slept on my right side, I no longer feel that."
As Clare noted, the met that was present and had shrunk at the time that she was on the Cedirnib has not grown, but a new met developed since she discontinued her Cediranib treatment two and a half years ago. This seems to confirm to me what Dr. Sawyer had told us about Brittany possibly being macroscopically cancer free at this time from her Cediranib treatment, but unfortunately, not microscopically. As Clare told me, "it's a devil of a disease seeking out blood supplies and oxygen but we'll keep seeking to starve it! "
Olga has shared additional information about Axitinib and current Axitinib Clinical Trials which ASPS patients would be eligible for under the "Other Clinical Trials" topic on the Discussion Forum.
I will stay in touch with Clare and will keep the Board updated with any new information that she shares with me. Take care everyone and have a most beautiful and joyous Holiday season.
With special caring thoughts and continued Hope,
Bonni

[Ivan]

Very interesting, and promising information Bonni. Thank you very much for that.

[LCMA]

I know this is kind of a stupid question and I could find the answer myself with some reading...(sorry in a time crunch!) but is Cediranib in phase 2 still?

LCMA

[Olga]

The clinical trial Phase 2 for cediranib in ASPS is still shown as enrolling (as of today Dec.17):

Phase II Study of Cediranib (AZD2171) in Patients With Alveolar Soft Part Sarcoma
This study is currently recruiting participants.
Verified by National Institutes of Health Clinical Center (CC), May 2010
First Received: July 18, 2009 Last Updated: September 17, 2010
http://clinicaltrials.gov/ct2/show/NCT0 ... pen&rank=7

with the time lines as follow:

Estimated Enrollment: 60
Study Start Date: July 2009
Estimated Study Completion Date: March 2011
Estimated Primary Completion Date: March 2011 (Final data collection date for primary outcome measure).
I am not sure how are they going to find 60 ASPS ppl to enroll...

[Bonni Hess]

Dear ASPS Community Friends,
Since Clare is no longer on Cediranib and is now participating in an Axitinib Clinical Trial, I have posted an update on her behalf and with her gracious permission in the "Axitinib" sub topic which is in the "Other Clinical Trials" sub topic in this "ASPS Clinical Trials" main topic on the Discussion Board.
With special caring thoughts and continued Hope,
Bonni

[Olga]

Just to finish this topic about Clare experience on a Cediranib trial:
1. She was on a trial for about a year, her response was dramatic (the centrally located unresectable tumor went from 10 cm to 4 cm).
2. She left the trial by her own will because of the side effects, being stable at that time continuously for awhile.
3. She was stable for about 2 years after leaving the trial.
4. Slow growth resumed and she started new trial for Axitinib.

[Bonni Hess]

Dear ASPS Community Friends,
For those of you who follow Clare Clarke's long ASPS journey, she is now back on Cediranib in a Clinical Trial in England. Thankfully she is having a successful response to the Cediranib thus far, and has graciously given me her permission to post her most recent update and good scan results which is as follows:

HI Bonni,
Sorry not to get back to you sooner, but Paul & I were away on holiday in Croatia. We've had a wonderful time and all the swimming in the sea has healed the skin on my feet that get sore with cediranib. Perhaps, I should bathe my feet in salt water at home as they are completely pain free and as smooth as a baby's bottom once more!
I had my last scan at the end of July and all remains stable. I have now been back on the drug since the beginning of December. I keep taking little breaks, so that my feet don't get too sore, but perhaps I can find a new way to manage this.
I am so glad that your Brittany is still doing so well. I know that ASPS seems to vary the path and it's speed in us all. If only we knew how it works so that we can prolong it's indolence in all.
I shall pray for the families of those who have lost their dear ones, and pray that science may give us more answers and explanations.

With deepest gratitude to Clare for her thoughtful sharing, and with special caring thoughts for everyone in the ASPS Community and continued Hope,
Bonni

[Ivan]

Thank you for providing this update

[Amanda]

Great news! I was thinking about her the other day this was great news to hear!