Matt on Cediranib Phase 2 clinical Trial at NIH

[wendik]

Matt has also begun his journey on Cediranib. He has been on the med for 6 days now with no side effects as yet. He is also on a BP med, and an increased dose of pain meds, as he has been experiencing more discomfort as of late.

[Bonni Hess]

Dear Wendy,
Thank you for the thoughtful update. I am so happy that Matt has been accepted into the Trial and has begun taking the Cediranib with no negative side effects thus far. I am VERY Hopeful that he will tolerate the drug well, and that he will have a VERY successful and sustained response to the medication. If there are any questions that I can try to answer regarding Brittany's Cediranib experience and side effects please feel free to contact me through this Board, at my personal e-mail address which is BonniHess@aol.com, or at my Home phone which is 425-392-7743, or my Cell phone which is 425-829-3210. I will be anxiously awaiting your updates and closely following Matt's treatment experience and outcome, as I continue to hold him and your family very close in my special thoughts.
With special caring and continued Hope,
Bonni

[wendik]

Thanks Bonni for your good wishes and all of your help. I will get back to you if I have any questions..

Wendy

[Amanda]

Hello Wendy,
Just a lil note to say hello to you and a HUGE *CHEER* Matt!
You are both in my thoughts and prayers!

In healing hopes for all!

Amanda

[wendik]

Hi everyone!

I know you've been waiting for a post, so here goes. Matt had his re-staging on March 22nd. His response is what they call "mixed". His larger tumors are pretty much stable in size, but many of his smaller lesions particularly in his lungs and one in his liver have shrunk. The team is pleased with this, as there is no new growth, and their feeling is that his primary tumor in his left glut, large rt lung met, and sacral met will take at least 6-8 cycles to respond.

We feel very blessed that he continues to have minimal side effects, occasional GI cramping and extreme fatigue seem to be the biggest issues. His blood pressure is under control now that they doubled his BP med, and his pain is lessened since they increased his pain MS Contin dosage.

Matt celebrated his 30th birthday sightseeing in DC with his dad and brother, and they had a wonderful time.

Wendy

[Bonni Hess]

Dear Wendy,
It was so very good to hear from you and to hear the wonderful and very encouraging news of Matt's stable disease and some shrinkage of his lung and liver mets. I am so happy that he is having a postive response to the medication, and I am holding very tight to Hope that the stabilization and tumor shrinkage will continue. Allthough Brittany thankfully had stable disease since starting the Cediranib a year ago this month, she did not experience significant tumor shrinkage until four months into her treatment, so the NIH Clinical Trial team may be correct in their estimate about how long it will take for Matt's larger mets to show a response and shrinkage. With this insidious disease, stabilization with no new mets and no growth of the existing tumors is a great victory in itself. I am so grateful that thus far Matt is experiencing only minimal adverse side effects from the medication, and that his blood pressure and pain are being controlled with BP and pain meds.
Please give him my Happy 30th Birthday best wishes and special congratulations and a high five for his very good two month Clinical Trial status scan results. What a wonderful way to start his new decade with good news and strengthened Hope! Take care Wendy, and keep the Board updated as you are able. We are all looking forward to continued good news.
Sharing the special joy of Matt's very encouraging scan results with much happiness, deepest caring, and continued Hope,
Bonni

[wendik]

Thanks Bonni....You always make me feel encouraged.

Wendy

[wendik]

Dear Friends,

I know I need to update you all on Matt's 6 month restaging. Unfortunately it did not go as well as hoped for. Matt has had no measurable tumor reduction as of yet, and 2 of his larger tumors have increased slightly in size. This includes the large tumor on his lung that presses against his heart.

Of course we are devastated, we NEVER considered the possibility that the trial could fail. I guess that was our mistake. The team still considers him basically stable, but are cautiously watching him. Dr. Kummar has recommended 2 more cycles of cediranib and if there is no improvement at that restaging, to consider dropping the trial and starting on Sutent. That will mean a huge battle with his insurance company.

She also wants Matt for the Cediranib + C-met Inhibitor phase II trial they are hoping to get underway in several months.

I know this is not the end of the road for us, and there are wonderful new drugs out there. I guess we are still new at this and were not prepared for the disappointment.

Anyhow, we ARE prepared for a very nervous 2 months. Matt is going to move back home to Ft. Lauderdale, where NIH has put us in touch with a new Oncologist. His name is Martin Guttierez, and has recently left NIH, and started in private practice in Ft. Lauderdale. Dr. Guttierez and Dr. Kummar together developed the Cediranib trial at NIH. Hopefully he can shed some new light on our situation.

Hope my next post will be a positive one...

Wendy

[Amanda]

Hello Wendy,
I am so sorry about the scans
I am confused though .. in April they said that some had shrunk. What did they say about that :/
If they said nothing about that i would have them or *someone else* look these scans over again...
If Matt is stable now thats good news though.. look at Clairs stability and that she is still stable...

There are alot of new drugs you are right and also look into the drugs that 'F' is usling on 'K' it is working well

I have you both in my prayers and thoughts!

[wendik]

Amanda,

Thanks for your thoughtful message.

I think they look at the big picture and average in the growth vs. the reduction. His average is basically stable. So, although there has been slight reduction in some of the tumors, the growth in the larger ones negates it....

I think that's how Yvonne explained it....

It confuses me also...

Wendy

[Arch]

Hi Wendy,

If he continues to be stable, will he not be allowed to stay on the trial ? I do hope that he can stay on the trial until the new trial starts, maybe cediranib alone is not sufficient, adding a c-met inhibitor would be good. Stability is good, ofcourse we hope for more..some of the other patients are also just stable after the initial shrinkage.

I hope you have a good discussion with his new oncologist and find answers to all your questions.
I also hope you get better news at the next scans. Take care.

Arch

[Fictional]

A c-met inhibitor + VEGF makes sense. It is good that they are renewing him for 2 months - you can also gather more information in the mean time.

I don't know whether this is possible or not, but if I can, I can try and walk you through how you can look at your own chest CTs and measure them. We've had CT scans all over now - Seattle, LA, Boston, etc. and they seem to use the same system. Pop the CD into your computer and do some double clicking to open the images. You can scroll up and down in the CT and use the Tools which has a ruler. If you right click on the ruler, you can measure the diameters yourself. The most common criteria are either RECIST or Choi. RECIST is the easiest to follow - and usually they will only follow a few marker lesions and they take the largest diameter. If one of the marker lesions gets bigger while another shrinks, then the net is no change...but you want to keep an eye on the increasing one. It is more dangerous if it is central (near the heart) or main bronchus.

Because our profiling data suggests that different mets may have slightly different molecular markers, when you are on one drug for a while, it may help some tumors go dormant (and some cells die) - while other clonal populations of tumors get more active and grow.

If you keep killing off different clones and switching drugs, it seems possible you can get the cancer to go dormant.

Try not to despair if you come off study - but keep a clear head and see if there's another drug or trial that will help you with another population of tumor cells.

One of the at least theoretical risks of antiangiogenesis factors is that it could increase the chance of metastases - that seems true in mice, but does not seem true in humans. The idea of a met inhibitor (inhibits metastases) + VEGF then makes sense. It also might be especially helpful to have a met inhibitor if you still have an intact primary, which is sounds as if you do. The primary can send out more metastases. Do you understand what I'm trying to say?

The sacrum is a very tricky area to operate and I think XRT is difficult too. There is some evidence that antiangiogenesis inhibitors boosts the effects of radiation. I wonder if you could get more opinions over the next 2 months (just by sending your films around and asking different doctors) about whether surgery or radiation or something else? could be possible. It might be that you could get some of the extra benefit of having been on Cediranib soon after the study if someone thinks radiation could help.

[wendik]

Thanks for the info, we will obtain his scans so we can take a look and do some measuring. We do have an appointment with a new oncologist in August, and hopefully he can steer us in the right direction. So far none of Matt's docs have been in favor of surgery because of the location and size of his largest tumors., but I'm not giving up on the surgical approach. He has 2 very large tumors, one in his lung, close to the heart, and one in his buttock. Either one can be the primary, but of course we are leaning more toward the one in the butt. The sacrum tumor although not the largest, is very dangerous, as there is bone involvement, and possible destuction of the sacrum (they can't tell).

It's truly a MESS!! (for lack of a better medical term).
T

Thanks again 'F'...
I'll continue to keep everyone posted,

Wendy

[Fictional]

If you don't mind sending copying your CD and sending it around, I strongly recommend Dr. Fritz Eilber at UCLA. He's a great guy and head of the sarcoma service. Because our daughter had a pelvic tumor, I researched like crazy and found some surgeon at the NIH who wrote a book on pelvic sarcomas - but he was winding down his practice (wrote the book, semi-retired) and told us that he actually referred patients to Fritz if they were ok to travel to California.

Fritz took out 'K''s 5 cm tumor after Sutent x 6 months (then off meds for 3 weeks before surgery) - no XRT or anything else and it's clean - no regrowth. The nice thing about UCLA too is that Shlomo Roz is there and he is one of the world's experts on pelvic reconstructive surgery. Fritz is a general surgeon. They coordinated the surgery with Shlomo closing the operation - so she had the tumor out and reconstruction in one surgery. They were amazing.

Fritz knows us - and we email him with updates several times a year. You can say that we recommended him as a 2nd opinion.

Also, maybe I'm just an optimist, but if they say there's possible destruction, I think it's possible there's no destruction and they're just covering themselves for the report. Maybe it's nothing. There are a lot of weird benign cysts that occur in the sacrum.Bony destructive lesions of ASPS aren't subtle. If you keep looking at it and it's not getting worse - that's good.

[Bonni Hess]

Dear Wendy,
Thank you for your thoughtful update. I am so sorry that Matt has not yet had any significant tumor shrinkage since starting the Cediranib Trial six months ago, and I deeply share your disappointment. I am grateful and encouraged though that he has not had any new mets since beginning his Cediranib treatment which with this insidious disease is a real victory in itself. I agree with 'F' that it would certainly be advisable to seek other surgical opinions regarding the possibility of resecting the presumed primary tumor in Matt's buttock as well as the large ones in his sacrum and lung. Reducing the large tumor burden in his body might enable Cediranib or some other systemic treatment like Sutent to be more effective in shrinking/destroying the other mets. ASPS patient Karen Imm who is a participating member on this Board was initially told that her heart tumor was unresectble, but she persevered until she found a cardiac surgeon who was able to successfully resect the tumor. Perhaps you could contact Karen to obtain the surgon's name and contact information in regard to possible resection of Matt's concerning large lung tumor that is close to his heart. Please know that my continued very best wishes and most special thoughts are with Matt and your family. I will be holding him and you very close in my heart and prayers and will be anxiously awaiting your next update which will Hopefully bring better news of Matt's positive response to the Cediranib treatment and tumor shrinkage, or another promising treatment option. Take care, stay strong, and keep in touch as you are able.
Reaching out heart to heart with special caring thoughts and continued Hope,
Bonni