Jordanne on Cediranib Phase 2 clinical trial at NCI

[Olga]

Jordanne can post here her experience with cediranib on clinical trial at the NCI in Bethesda. This is what she posted earlier:
"Hello everyone!

I just returned from my last trip to NIH and I am happy to say I was enrolled in the trial! So far things are going well. I'm getting ready to fly back again on Sunday (seems like this is going to have me on the go a lot). I've experienced some signs of side effects but nothing too bad as I have not been on the drug too long. I'll just be hoping for some good results and some tumor shrinkage I'll try to keep the board updated as new things happen or any changes that occur! Hope everyone is doing well.

Jordanne"

[DottyW]

Hello all,
Great news to report. On Tuesday, the 16th of March, Jordanne had her 2 month review at NIH, PT and CT scans. The results were really good. Jordanne's one lung met that they are measuring had shrunk by 17%. The smaller lung mets appear to have all shrunk as well. There were no new tumors. The Dr. said that they need to see 30% shrinkage to call it a response, so they are calling this stabilization but were quite pleased with the shrinkage so far. Jordanne has lost quite a bit of weight so we were concerned but they did not think that it was enough to worry too much about since she was also having to deal with the fact that she broke the titanium plate that they put in her jaw in November.

After her visit to NIH, she flew to New York to have another surgery on her jaw to try to fix the problem. She has to be off of the Cediranib while she has the surgery and until that surgery is healed. This should give her a chance to put a little weight back on. We are hoping that will be no more than 2 weeks post surgery now that we have had such positive results of her scans. Her surgery did not quite go as planned. Dr. Delacure was unable to get the part he wanted to bridge the plate. He tried a number of fixes but was not confident that any of them would not set her back. He decided finally that discretion was the better part of valor so he simply cut the plate back a bit so that it would not rub against each other causing her pain. Her jaw will continue to work with one hinge like carrying a bucket with a broken handle. I know that he wants her to get back to the drug trial as soon as possible since there have been some positive results to this point.
We are hoping that each of you on the trial will be encouraged by Jordanne's results so you can stay strong while enduring all of the not so fun side effects. It has definitely been encouraging to Jordanne. Prior to the results of her scans she was getting discouraged with the bouts of diarhea and nauseau that were causing her to lose a lot of weight not to mention the exhaustion. We want you all to stay strong trusing that the cediranib is a big step up in kicking this cancer in the butt!
Keep hope alive!
Wishing you all continued hope and health,
Dotty

[Amanda]

Hello you two!
YAY for the responce and the stability!!! this is great news!!

I am sorry about the plate and i am glad he fixed it so there would be no more pain...
I hope that you do gain some weight back and this also means that you can eat really fat stuff that i cant eat, hehe
Things chocolate and cake and OOoOOOoo i am hungery! Though you may not be eating things like this if you do please eat a cookie for me and i am not picky what kind, hehe what ever makes you smile!!!

[Bonni Hess]

Dear Dotty,
Thank you for sharing the WONDERFUL!! and VERY encouraging results of Jordanne's two month Cediranib status scans. Please feel the embrace of my happy celebratory hugs and know that my heart is full of special joy and strengthened Hope for continued stabization of Jordanne's disease and increased shrinkage/necrosis of her lung mets. I am so sorry that Jordanne had to undergo yet another jaw surgery and that Dr. Delacure was unable to completely repair the broken plate, but I am grateful that he was able to resolve the situation to the point that she will have relief from the pain and will Hopefully be able to resume eating a regular diet and regain some much needed weight. I am grateful too that she didn't have to undergo a much more extensive surgery to completely replace the plate, and am Hopeful that she will have a very speedy recovery and be able to resume her Cediranib treatment as soon as possible. In the meantime, I Hope that Jordanne will be able to rest, relax, and regain her strength while having the break from the Cediranib and the negative side effects that she has been suffering, and that the VERY encouraging scan results will help to stengthen her emotionally for her continued courageous battle. I Hope too that the other ASPS patients who are participating in the NIH Cediranib Trial will write to update this Board with information about their treatment experiences and status scan results thus far because this shared anecdotal treatment information is so vitally important to all of us.
Sharing the great joy of Jordanne's good and very encouraging scan results with special caring and continued Hope,
Bonni

[DottyW]

We received more good news at Jordanne's last visit on June 8th. Her largest lung met has now shrunk by 35% so they have listed it as a partial response. She also gained a pound despite the constant diarhea. We were very excited by the results so far.
She also had scans done on her legs as she was having some pain and the PT scans had shown some type of activity. Nothing showed up on the CT scans and Dr. Kumar told us that the PT scans can show activity for a long time after surgery so we feel much more positive about that as well.
Some of the best news of all was that she is now approved to go to Bethesda only once a month! I think that she can really start healing when she doesn't have to travel across the country every 12 days. Her leg continues to get stronger and with her new brace she will be moving from crutches to cane now. She took a fall last week and bent her crutches but only a few bruises despite the fact that she landed on her hip that has very little muscle for protection. Once again, she has proved herself to be a tough cookie.
The side affects of this drug continue to be the bain of her existance. The Dr.s at NIH were better this time about listening to her, really caring, and gave her some more advice on how to try other things to get a handle on the diarhea. (Guess I should probably learn once and for all how to spell that lovely word!) Anyway, she was ready to quit the whole trial on Monday morning but changed her mind after the results and getting a more compassionate response from her doctors. I think the fact that she was able to get her surgeries and onto the drug trial so quickly after diagnosis has kind of kept her from experiencing what the reality of life with ASPS is without Cediranib.
She is also getting set up with disability now and that process seems to be going smoothly. She will still be able to work a little when she is up to it. We feel blessed to have the resources to have taken care of her expenses so far. Her insurance, Group Health, has really been good about taking care of the surgical bills and approving everything so far which has been a real blessing to us. They're probably really happy to have her in the drug trial so they don' t have to do all of her scans.
I am happy to be able to share Jordanne's good news with all of you and pray that the rest of the patients on this drug will be experiencing that same kind of shrinkage! We learned that at least 7 of the 20 some patients in the trial have shown a partial response with a few more very close to that mark. Next maybe they will be able to find a dose that is just as effective without as many side affects. Keep hope alive!
Blessing to each of you,
Dotty

[skyflower]

Hi Dotty! Jordanne and Lucio seem to be stuck in the same boat, regarding wanting to quit. Lucio was all set on Monday to ask for extended time off, a reduced dose, or even quitting, but also changed his mind and they will continue to play around with his cramping meds. What dose is Jordanne taking? and how much of a change was there between the most recent scan and the last scan?
I'm excited to read about Jordanne's partial response. And Congratulations for only having to visit NIH once a month!
-Lokelani

[wendik]

Hi Dotty,

We are so happy to hear about the reduction in Jordanne's lung mets. I keep praying that Matt will have the same response. So far after 5 months on cedirinib he is stable, but not experiencing much shrinkage. The side effects seem a little milder for him. He has only had a couple of bouts of diarrhea, so far. The worst problem for him is the constant fatigue. Some days he can't get out of bed at all, and that makes it difficult for him to think about returning to work. He is also experiencing a lot of back pain from the tumor on his sacrum, and we're having trouble controlling that with his pain meds. He is in Bethesda today, and Yvonne upped his pain med dosage, but that will just make him more tired. It's really a vicious circle.... Matt is worried that because he is not having the same severity of side effects as many of the patients that the drug is not working as well for him.( I think that thats probably unfounded.)

Try to encourage Jordanne as much as possible...going off the drug can cause SERIOUS rebound. Yvonne and Dr. Kumar told Matt today that they are working hard to come up with an additional med to supplement the cedirinib that will attack the mets. They are hoping that its only a few months away.

Matt has lost 40 lbs since his diagnosis in November....about 25 were since cedirinib...

Wendy

[Olga]

Wendy - did you ask about the possible resection of the primary tumor since it is really painful? Since Matt has other mets as a control they will keep him on the trial. There are numerous people with ASPS that have been told that their abdominal primaries are not resectable but they found great surgeons that resected them and they are doing better now. Or you can get the consultation with Dr.Littrup re. possible cryoablation of the primary tumor, because local tumor ablation is now recommended by the guide lines of sarcoma treatment for the painful metastases, I have seen in some US insurance guides that cryotherapy was approved and paid for when metastatic tumors are painful. His weight loss is really worrying by itself and I am not sure it is caused by the cediranib as you saying his is not having severe side effects from it and has started before Matt started taking cediranib, so it might be caused by the bulky primary tumor itself in a condition that is called cancer cachexia and what you are saying about his overall condition is very much consistent with this syndrome - skeletal muscle loss, low energy, depression.There are a lot of articles with the full free text on the pubmed.gov if you want to red on the subject this is one of them
http://www.ncbi.nlm.nih.gov/pubmed/19342610
what I mean is the tumor that big may be toxic for the body even if its blood supply is damaged and it needs to be managed somehow.

[Arch]

Wendy, Brittany seems to have had stability for a few cycles initially followed by shrinkage, lets hope the same for Matt.

I'm happy to hear about the partial response for Jordanne.
Lets hope that the new trial will be a better combination with better results for everyone.

Take care
Arch

[DottyW]

Thanks all for the support and the shared celebration.
Lokelani, pretty name, Jordanne has been changed to diphenoxylete 2.5 mg 4 times a day which is doing the trick for the diarrhea. She has lost 30+ pounds overall but gained one last week. That weight loss does include removal of a 3 pound tumor in her thigh. She has always been slim but now looks bony at 5'10" and 109.
We celebrated another milestone this week as she is able to walk with her leg brace and no crutches. It's amazing how her mood has changed this week. She has had more energy this week, but it always comes and goes. I think the increased energy is from using less pain meds as well. It would be great if she could rely totally on the spinal cord stimulator instead of the meds but I won't get greedy. Just praising God for all of the positive steps lately.
So my prayers go out for all of you and your loved ones as we continue to fight this battle.
Dotty

[DottyW]

Hi All,
Jordanne had her latest scans on August 2 at NIH. She had no new growth but no more shrinkage so is stable at this time. Her blood pressure keeps climbing so her BP meds have been increased.
Has anyone been experiencing muscle pain? Jordanne has had "tendinitis" in her arm, for just a week. Then a problem with her good leg which felt more like a high ankle sprain. And now has pain in her shoulder/ rib cage are. Each one seems to last around a week.
Her thyroid is still borderline so she has not had to start on any meds for that yet. We will see what her oncologist thinks at her appt next week.
we're happy to be done with the "scanxiety" for a couple of months!
God Bless,
Dotty

[Olga]

Dotty, muscle pain was one of the main reasons for Clare Crarke from UK to drop off the trial after 2 years on it as she wanted to run etc. and it was not possible with the cediranib. And it is frequently described side effect for TKI drugs overall. But since it is time limited for Jordanne I guess it is OK? Best wishes to Jordanne and I am glad to hear that her stability continues and she stays on the trial, it looks like for some people damage done to the mets by cediranib over the time is permanent and mets do not start to grow again (even though there is no shrinkage on the scans - necrotic tissue dissolves better in some organs and maybe stays forever in other less dense organs like lungs).

[Olga]

Reposted by the owners request:
Jordanne's latest results:
Everything looks good for her and they were able to see that she had a sinus infection which could have contributed to her vomiting. She has not had any since she has recovered from her virus.
There were no new mets and possible shrinking of her largest 8mm met, but with a CT scan it might be the same , either way at least it's not growing and some of the mets did not show up but they may be small enough to be hiding between the pictures.
One of the most remarkable things in Jordanne's progress is that she is no longer regularly taking any pain meds! compared to last winter, this is huge! Her foot starts to hurt when it gets cold but she is learning how to manage her pain. She hasn't had her spinal cord stimulator turned on in over a month as well. This is all a complete answer to prayer as her nerve is definitely continuing to heal.
She will see her oncologist, Dr. Lonegran tomorrow so he will go over her scan results with her in more detail. She was unable to have a PT scan because the machine was on the fritz. That's OK because it would have lit up like a Christmas tree with all of the coughing she was doing.
So that is pretty much Jordanne's update.
Blessings to all,
Dotty

[Olga]

Dotty, thank you for the update. Could you open a new topic for Jordanne in the Personal Updates, give a short description of her case and keep it updated on a larger scale when anything comes up so she gets her case description separately from the Cediranib, as I understand she had some other issues with the initial surgery and the mets after?

[Bonni Hess]

Dear Dotty,
Thank you for sharing this very happy news regarding Jordanne's most recent very good and encouraging scan results, in addition to the great reduction in her debilitating foot pain. It is wonderful that her damaged nerve is continuing to heal and that she no longer has to take regular pain meds to control the pain. I am so very happy for her and your family, and am so glad too that her vomiting seems to have resolved and thus may have just been caused by a virus instead of a side effect of the Cediranib. I Hope that her Cediranib side effects are minimal and tolerable, and that with her reduced foot pain she is now able to be more active and better enjoy her young Life again. Please give yourself and Jordanne a happy hug from all of us Hesses, take care, and keep in touch with the Board as you are able.
Sharing your wonderful news with much happiness, special caring, and continued Hope,
Bonni