Mario and Cediranib

[Bonni Hess]

Dear Mario,
Your very detailed update and important shared information are so deeply appreciated. I am so sorry for the concerns raised by your Cediranib re-staging scans this week regarding possible increased growth in the size of your targeted lung mets, but I am very Hopeful that the very small amount of increase is just due to the normal deviations related to where the CT scan sliced the tumors rather than actual growth of the mets. I am encouraged that the Cediranib seems to be continuing to prevent new tumors, and will hold very tight to Hope that your February scans will show continued stable disease. I think that it is always important to be researching, exploring, and considering future treatment options in the event that resistance is developed to the medication, and I admire your pro-active approach and everything that you are doing in this regard. As you explore other treatment options, you might also want to discuss with your oncologists the promising new tyrosine kinase inhibitor (TKI) Axitinib that Olga posted information about yesterday under the "Other Clinical Trials" topic. ASPS patient Clare Clarke who was previously treated with Cediranib in England and had two years of disease stabilization after choosing to discontinue the Cediranib in July 2008 due to severe side effects, unfortunately recently developed a small amount of disease progression with a new lung met, and has been in an Axitinib Clinical Trial since September with three months of stable disease thus far. It is wonderful to have another possible treatment option now available, and I will be closely following Clare's Axitinib treatment experience and results and keeping the Board updated.
I will be anxiously awaiting your next update, but in the meantime, I Hope that you will be able to put your new concerns to the back of your mind and try to enjoy a most beautiful and happy Holiday season shared together with your family and friends and brightened with continued Hope. Take care dear Mario, and know how deeply grateful I am for your continued faithful shared updates and information.
With warm hugs, special caring thoughts, healing wishes, and continued Hope,
Bonni

[DottyW]

Mario,
I'm sorry to hear about the possible progression of your tumors, no matter how small. I believe you were in the clinic at the same time as Jordanne and another Ced. patient, Ana, from Brazil. From your picture on facebook, I thought it looked like you but didn't want to bother you. Jordanne was sitting in a wheelchair, if you happened to see her due to her broken leg.
Jordanne also had some growth of her one tumor that they are measuring, but it was somewhat expected as she was off of the drug for 5 weeks for her surgery. We are hopeful that the tumors will go back down as she started back on the cediranib on Thursday.
Keep a positive outlook that this is just a variation of the CT scan. It's good to know that there are other trials coming up if this one should quit working for you.
In my prayers,
Dotty

[cachabamba10]

Hey

@Olga
Thanks for answering one of my questions that has been in the back of my mind, (how many mets could be ablated by cryo). I will go ahead and try to contact Dr. Litrupp and see what he thinks of the situation and see if he could ablate the " two growing mets". I will also research the technique itself, one of the most important questions is the re-do in cryo. How many times can such a technique be use? Concerning Dr. Rolle, I will try to contact him on January, and see what he says, concerning my liver "spot". I was told by Dr. Spunt some time back that the location of the "spot" was not problematic. Surgery could be schedule at any time in St. Jude's Children Research Hospital. The only thing holding me back is the "no surgery" policy on the Cediranib trial. The radiologist concluded the there is a "high possibility that the spot is only a fatty mass" but then he said that he could not possibly be sure 100%without biopsy. Needless to say if progression happens on February, my first thing to do would be to remove this liver spot.

@Arch

Hey Arch thanks for the info on the wash out period. How is Sree doing? I hope that you all have a wonderful time on the holidays, I myself can't wait to open my presents lol. Christmas time is the best. Sree is always in my prayers.

@Bonni
Thanks for your kind words Bonni, and the info on the new drug Axitinib was it.... I will look into the drug and research it a little bit. I am happy about one thing, it seems that ASPS patient have more and more options now days when it comes to systematic treatments. Sadly, most of this drugs are in their respective research state.

I am hoping that on February my scans look good, but just in the off chance that they don't I also want to be ready. At the same time, I am having a blast wrapping presents and getting all the decorations out and putting them in their respective places at home. As I said before Christmas is the best.

@Dotty

I did see you all, I was wondering if it was you all or not. The moment I got in the elevator and I saw that you all were going to the 13th floor. I am deeply sorry that I didn't talk to you all, I just had so much on my mind with the scans and sadly my father suffered a bell's palsy attack the Monday before. My dad is doing fine, is just that he suffers from high cholesterol so we all thought he had a stroke instead of a bell's palsy attack. Nothing to worry though, he is fine and back at work. I hope you and jordanne have a awesome christmas time and maybe next time we can sit down and just talk some.

Take care you all;

Mario E. Arevalo

ps If anyone wants to socialize in facebook, I don't mind at all. I have a bunch of pictures of fund raisers that we have done for St. Jude's in different locations. Here is the link to my profile http://www.facebook.com/cachabamba10

[wendik]

Hey Mario,

Not surprised to hear about your slight progression...hope it stablizes and you remain on the ced for a long time. Matt was also considering the ARQ197 trial, we were under the impression it was to be combined with Cediranib.

Matt has started his Sutent treatment, so I'll let you know how it goes. So far he has some loss of appetite and the fatigue is back, but its only been about 10 days. It will most likely get worse. If he's not responsive, we will definitely go for the ARQ trial.

I will "friend" you on facebook....

Have a wonderful, healthy holiday with your family

Wendy

[Olga]

Mario - it looks like you have a plan. I would suggest you to ask about ablation at the St. Jude's Children Research Hospital initially as they use diff. types of ablative techniques too and it may turn out that you can have it done there instead of going to Detroit. Dr.Littrup is an excellent choice but there is considerable experience at the other places as well, esp. when the location allows it to be done with the RFA.

[Arch]

Hi Mario,

Its been a while since we heard from you. Hope you are doing fine.
Take care and hope to hear from you soon.

Arch

[cachabamba10]

Dear ASPS community:

I apologize for not being able to write sooner, I sold my computer the last week of December with the plan to buy a new one on January. My plan was screw due to the the massive recall that Intel has because of their new Sandy Bridge Microchip. Needless to say I am now computer less and I hate every moment of it. Thanks to my sister for letting me use hers.

I had my latest and last re-stage done at the NIH on February 1st. My scans showed stability BUT when you compare my first scan done before starting Cediranib to this last scan, you can see a VERY MINIMAL AMOUNT OF GROWTH. Due to this, Dr. Kummar explained that it was not beneficial to keep on the treatment. The decision was taken then to stop taking Cediranib and I have been off the drug since then. I am certainly grateful to the staff at the NIH, even though I was hoping for 14 to 16 months of continued treatment with Cediranib 12 ain't that bad.

I am still debating on what to do next, in two weeks I should know better. I have some ideas as I have shared them with you all. I will be seeing my oncologist at St. Jude's next week and I will let you all know.

On a side note this last couple of weeks have been amazing. I am feeling so much better, is like if I am someone else. I can eat anything I want and just enjoy life. I guess you can say I am having my own vacation Yep.

Take care everyone, and I will let you all know what I decide to do in the future.

Sincerely;

Mario E Arevalo

[Olga]

Mario, thank you for an update. Just to remind you that the min. time off TKI drugs before you are supposed to have any invasive procedures as an ablation or a surgery is about 2-3 weeks to avoid an excessive bleeding. If you are going to have any, do not loose the time, start scheduling.

[Bonni Hess]

Dear Mario,
Thank you for your very thoughtful Board update and private message to me in response to my messages to you. I hadn't even thought about the possibility that the reason that you hadn't written to update or responded to my messages was due to computer problems, so I am especially happy and relieved to hear from you since I was becoming increasingly concerned given the unpredictable nature of this insidious disease and the known risk of developed resistance and rapid rebound with Cediranib. I am so sorry, and somewhat perplexed, that you have been taken off of the Cediranib Trial despite the fact that your February 1st scans showed stability. I understand that due to the indolent nature of ASPS that it is important to compare scans with not only the previous re-staging scans, but also the first ones that were done at the beginning of treatment, but it is my understanding that up to 20% growth is allowed and if there is only "a VERY MINIMAL AMOUNT OF GROWTH", it seems that your being taken off of the Trial may be premature so I am perplexed about Dr. Kummar's decision unless you actually had more than 20% growth. Was the small amount of growth in both your multiple lung mets and your "unknown" liver mass, or only in your lung mets? Has a definitive diagnosis been made yet regarding your liver mass?
I am very grateful that you are feeling so much better since discontinuing the Cediranib and that you've been able to eat well, enjoy Life, and have a break from all of the negative side effects that you have endured for the past year. I do think that you shouldn't go too long before pursuing another treatment due to the risk of rebound, and if you are planning to have Cryo for your lung mets or surgery for your liver mass you should try to schedule the procedures as soon as possible as Olga has wisely advised. I Hope that your disease will remain stable while you are exploring other treatment options. I will be anxiously awaiting your update on the results of your oncologist appointment at St Jude's next week, and continuing to hold you very close in my heart and most caring thoughts. In the meantime, please take care Mario, enjoy your "vacation", and keep feeling good and enjoying Life .
With deepest caring, healing wishes, and continued Hope,
Bonni

[Ivan]

Dear ASPS community:

I apologize for not being able to write sooner, I sold my computer the last week of December with the plan to buy a new one on January. My plan was screw due to the the massive recall that Intel has because of their new Sandy Bridge Microchip. Needless to say I am now computer less and I hate every moment of it. Thanks to my sister for letting me use hers.

I had my latest and last re-stage done at the NIH on February 1st. My scans showed stability BUT when you compare my first scan done before starting Cediranib to this last scan, you can see a VERY MINIMAL AMOUNT OF GROWTH. Due to this, Dr. Kummar explained that it was not beneficial to keep on the treatment. The decision was taken then to stop taking Cediranib and I have been off the drug since then. I am certainly grateful to the staff at the NIH, even though I was hoping for 14 to 16 months of continued treatment with Cediranib 12 ain't that bad.

I am still debating on what to do next, in two weeks I should know better. I have some ideas as I have shared them with you all. I will be seeing my oncologist at St. Jude's next week and I will let you all know.

On a side note this last couple of weeks have been amazing. I am feeling so much better, is like if I am someone else. I can eat anything I want and just enjoy life. I guess you can say I am having my own vacation Yep.

Take care everyone, and I will let you all know what I decide to do in the future.

Sincerely;

Mario E Arevalo

Haha I am waiting for Bulldozer or Ivy Bridge since I already have a Core i5 750 @ 4 GHZ.

I am glad you are at least feeling better. Perhaps you will go to Sunitinib next?

[Olga]

I personally support Dr. Kummar's decision - if she sees that there is a very slow growth between the scans, then it is better to send the patient looking for other options. It is less then 20% that kick you off the trial automatically but let say it is a 10% growth (it is may be less in Mario's case...) - and the scans are done every 3 months. In a year the actual growth can be 40 % and the person still formally would not be off the trial. How that would be then? I actually hate the practice when some oncologist turn their blind eyes on the fact that ASPS is a very slow growing disease and keep reporting to the company sponsored the trial that everything is going awesome, just a success, a patient with ASPS is having a stable disease - when in fact this patient with ASPS is having the same slow growth as he had before. In the meantime the patient loses his time, the window of opportunity to do something else - a surgery, ablation, another clinical trial. As you know Bonni, the trial for cediranib at the NCI is a phase 2 trial and it does not normally allow the surgery being done while on it, and Mario could not address his liver "spot" problem while on it. And ablation is a size restricted procedure so again, I would really prefer to know about the growth instead of being told that everything is stable by the REGIST criteria.

[Bonni Hess]

You have made some very good points Olga, and as always I deeply respect your knowledge, valued opinion, and input. I completely agree with your concern about the Clinical Trial discrepancies that occur between the actual overall tumor growth compared with the sometimes misleading "stable" scan results which are reported with the scans that are done every 2-3 months and compared only with the scans from the previous 2-3 months. However, since Mario's scans were compared to his original scans from 12 months ago and only a "VERY MINIMAL AMOUNT OF GROWTH" was seen overall during that 12 month period, it seems that if the overall growth was very minimal that he could have remained on the Trial for one more cycle with comparisons continuing to be made between each new scan and the initial scans to ensure an accurate reflection of the actual amount of overall growth. If a continued and increasing amount of growth was seen between the next scan and the intital scan, then of course it would make sense to discontinue the Trial and seek other treatment. I guess my question to Mario should have been, how much was the "minimal amount of growth" which was detected during the past twelve months? Certainly, any increased growth is a concern regarding a possible failed response to the medication or developed resistance, but if it is only a couple of millimeters during the past 12 months, then it may be attributed to the acceptable error of margin with scans. I am just reminded of Jonny Guay's case when he was erroneously abruptly taken off of the NIH Cediranib Trial for alleged increased growth in a tumor, and then according to his mother it was later determined by a reveiw of Jonny's scans by his regular oncologist that there had actually not been any increased growth in the tumor at all. Tragically, due to the rebound caused by the abrupt discontinuation of the Cediranib with no new TKI systemic treatment begun, Jonny devastatingly developed rapid disease progression.
You have highlighted a very important issue Olga that all Clinical Trial patients need to be aware of regarding the need to request/require that re-staging scan comparisons be made between the currrent scan and the initial scans, rather than just the previous 2-3 months scans. Thank you.
With special caring thoughts and continued Hope,
Bonni

[Arch]

Hi Mario,

Thanks for giving us an update, we were worried when we didn't hear from you.
Did the doctors at NIH give you any information about the new trial(arq + pazopanib) that they had talked about earlier ? They told us in November that it could start in 3-4 months. I don't see it on clinicaltrials.gov website and so assume it isn't open yet..any updates ?

I hope you are exploring all surgical options at this point. Enjoy this break, I totally understand how you feel, Sree was also a very different person during his break.

Take care

Arch

[wendik]

Not surprised that Mario is off the trial. Dr. Kummar is looking for that "30%" (or close to that) reduction at least on one of the scans, and if she doesn't see a substantial reduction at some point then it doesn't look like the drug is doing its job. Unfortunately, many patients don't get those numbers.

It just goes to show cediranib, while definitely worth a try,isn't for everyone.

We're still looking forward to the ARQ/Nexavar trial. That one may really have some positive results!!!

Wendy

[DottyW]

Mario,
Best wishes to you as you enjoy the normal life for awhile. I hope you will be able to get on another drug soon. I enjoyed meeting you at NIH and we will miss seeing you next week.
Continue your positive outlook and fighting spirit. You are in my prayers,
Dotty