Mario and Cediranib

[cachabamba10]

Dear everyone:

It's been some time since the last time I updated you all.

Here it goes, I have now started my 5th cycle in Cediranib. I have so far done 3 Cycles of Cediranib at the 30 mg dose and starting the 4th my dose was reduce to 20mg because of concerned pain to the joints, loss weight, uncontrollable diarrhea, and head aches. I think that I could have tolerated the 30mg dose but the doc and Yvonne (nurse practitioner) did not wanted to take any chances. I think the weight loss was the most significant deal breaker to reduce the dose.

On my 4th cycle, I had all the scans done again.....Amazingly I have had a 37.5 % reduction on the tumors that are being followed by the study. This is way cool, on the first 2 months I had a 28 % percent reduction and on the 4 months is now a 37.5% reduction and that was while I had my first month on the lower dose.

Family and myself are feeling real good about this.

Now since the dose was reduce to 20 mg, the side effects have been way way less severed. Diarrhea still a side effect but its just something that you can control and not have to worry about much. Also, I am able to control the diarrhea with just watching my food. I have not use imodium for over a month. AWESOME

joint pain is still there but not as bad. I had to get a MRI because of the headaches and the MRI was clear. I do get headaches.

overall, Cediranib is much much tolerated at 20 mg. Now, I guess only time will tell whether the lower dose is potent or strong enough.

My liver lesion is still the same. I have had 3 abdomen scans now in a period of four months and the lesion is the same at 1.4 CM. It is making me wonder what this thing is. We know that is there but is not shrinking or growing. We will make a decision whether to byopsy this lesion in 2 months, when I go for my 6 cycle scan progress result visit.

Thats all the info I have so far, and I apologize for taking so long.

Sincerely;

Mario E. Arevalo

[Fictional]

Hey Mario,

This is a GREAT update. Congrats! Wonderful to hear that the side effects are better and that the tumors are continuing to shrink!

: ) 'F'

[Bonni Hess]

Dear Mario,
As I wrote to you in my private message to you, I am so very happy and encouraged by your continued stable disease and significant tumor shrinkage, and my very best wishes and greatest Hope are with you for a continued successful response and reduced negative side effects on the lower 20 mg. Cediranib dosage. Regarding your liver lesion, I was wondering if a specialized liver CT and ultrasound could be done like the ones that Brittany are scheduled to have on June 30th to try to determine if her new 1.4 cm liver lesion is a tumor or something benign like a fatty tissue deposit. I suggest that you discuss this diagnostic option with Dr. Kummar and your St. Jude oncologist since it would be a safer alternative to a needle biopsy which always raises concerns for me of possible seeding of the tumor cells if the lesion is a tumor. Thank you again for your thoughtful update and shared information. I will look forward to your next update which will Hopefully bring more good news of continued stable disease and tumor shrinkage. In the meantime, please take care, continue to feel better, and keep in touch with the Board as you are able.
With special caring thoughts, healing wishes, and continued Hope,
Bonni

[wendik]

Mario,

Do you mind if I ask you what foods you are avoiding (or eating more of)???? Matt is having some really bad GI issues lately. gas, diarrhea, cramping....
He doesn't want to eat ANYTHING for fear it will upset his stomach. Needless to say starvation is not the answer.

Thanks, and congrats on your continued tumor reduction!

Wendy

[Bonni Hess]

Dear Mario,
If you have read my most recent update on Brittany, you know that her recently identified liver lesion has thankfully been diagnosed as a benign focal area of fat deposition rather than a tumor. I was wondering if the same special liver MRI could be done for you at NIH or through your regular oncologist at St. Jude to determine what the lesion on your liver is, as opposed to subjecting you to an invasive biopsy as you said is being considered. I Hope that your negative Cediranib side effects are improving and that the Cediranib is continuing to work to stabilize your disease and to shrink your tumors. Take care, have a safe and happy 4th of July, and keep in touch as you are able.
With special caring thoughts and continued Hope,
Bonni

[cachabamba10]

Hey everyone:

I had my six month evaluation done two weeks ago on the 8th of August and the scans showed the disease to be stable. There was no shrinkage or growth. I want to go ahead and share something with you all. on my six cycle I had to stop the medication for a whole week due to some internal bleeding. Dr. Kummar told me to get a colonoscopy and endonoscopy done. I had it done and it showed that I had some sores in my throat due to the medication. The doc who did the colonoscopy biopsy the sores and they were negative. Dr. Kummar now has me taking pepcid ac twice daily plus sucrafalte four times daily. Then after the scans were done on the 8th, I had to again stop the medication due to balance problems. I was having headaches pretty bad ones, and at certain times I would feel like I was falling down. It was weird. Needless to say they order a brain MRI again, and I saw a neurologist, endroconologist, and a ENT and if that wasn't enough they pull two of my wisdom teeth OUCH. It really wasn't that bad, the only inconvenience was the fact that I am always alone at the NIH.

so the medication was stop since August the 8th for a week and a day. I am now back on track and they have also move my appointment time so that I have a full 28 days on the med.

Pretty hectic time I tell you, but overall I am doing fine.

Hope everyone is doing okay and you all take care, if you all have any questions ask them, don't hesitate.

take care

Sincerely;

Mario E. Arevalo

[Bonni Hess]

Dear Mario,
Thank you for taking the time to send your very thoughtful and informative update, and for your kind personal message to me in the midst of all that you have been going through. It was so very good to hear from you and to hear that your six month Cediranib trial status scans thankfully showed continued disease stability and no new tumors, but I am so sorry for the additional negative side effects and symptoms which you have been experiencing. Each patient seems to have common side effects from the Cediranib, but also different ones. For example, I have not yet heard about any Cediranib patients on this Board who have experienced the periodic severe vomiting episodes that Brittany has had, and I have not heard about any of them, including Brittany, who has experienced the internal bleeding related to Cediranib caused sores in the throat. Brittany does get headaches, and she has been recently experiencing the balance problems which you described which Dr. Sawyer has explained are related to the Cediranib crossing the blood brain barriar and effecting the cerebellum which controls balance. I am sorry that you had to have two wisdom teeth pulled in the midst of everything else that is going on. Did the doctors feel that your severe headaches were related to your wisdom teeth issues? I Hope that the pepcid ac and the sucrafalte will resolve your internal bleeding and throat sore problems, and that your headaches will dissipate now that you've had your wisdom teeth extracted. I am grateful that you have now been able to resume your Cediranib medication, and I Hope that you will not experience anymore concerning side effects. I Hope too that your next scans will show not only continued disease stability, but also more tumor shrinkage. In the meantime, please know how deeply appreciative I am of your continued invaluable sharing of your Cediranib treatment experience and results. I wish that other ASPS patients or their family members would be more active in updating and sharing their anecdotal treatment information because shared information is truly one of our most valuable weapons in fighting this extremely rare and poorly understood disease. Take care Mario, have a wonderful rest of the summer, and keep in touch as you are able.
With hugs, special caring thoughts, healing wishes, and continued Hope,
Bonni

[Arch]

Dear Mario,

We had been waiting for your update, ever since we talked to you at NCI and heard about the developments, we have been thinnking about you a lot and hoping that everything was ok. We are glad that there is nothing serious and you have started cediranib again. Too bad that Sree's and your appointments would now be on different days, hopefully we will meet sometime again. Take care.

Arch

[cachabamba10]

Dear Mrs. Hess and Arch:

Hey, first the wisdom teeth were pull due to a infection that I had in my gums. They actually stop the medication due to the head aches. Since the medication was stop, Dr. Kummar felt that we could go ahead and pulled the teeth at the same time. I am really wondering about the balance problems, and migranes. The neurologist and oral surgeon told me that the chances that my teeth were causing the headaches were really low. They were right because I still get the head aches. Is really not that bad because I only get minor ones, its just once or twice a month that I get a really bad one. On the losing my balance subject, no one at the NIH was able to pin point the exact why. They attribute the phenomenon to the drug and thats it, but What Dr. Sawyer said does make a lot of sense Mrs. Hess.

Arch and Sree, I know I was really disappointed when I was told my appointment time would be move ahead a week. But, I really enjoy visiting with you all and I hope for the best. Give my regards to Sree for me please Arch.

You all take care;

Sincerely;

Mario E. Arevalo

[cachabamba10]

Everyone:

Sorry for taking so long to post an update, I am doing good so far. had the res-staging done on October and I am still stable. There was some pet scan activity seen but we will see in December on my next scan if there is any change.

take care everyone;

Mario E. Arevalo

[Olga]

Thank you for an update!
Good to hear that stability continues, how do you feel overall - balance problems, headaches?

[cachabamba10]

hello!!!!!!!!!!!!

I am currently in the NIH and waiting for the shuttle to the national airport. I have quite a lot of information so I will try to share. First, I had my scans done yesterday. The study team are following two lesions in my lungs. each lesion measure about 1.5 to 1.7 cm at the start of the protocol. They both went down to about 1.0 or 1.1 cm. On this latest scan, it showed that the combine measure of both was up to 2.3cm to 2.4 cm. Before they had a combine measure of 2.0 or 2.1 cm. Dr. Kummar explain that it could be two things, one I am actually developing resistance to the drug and this is an early showing of that, or this could be a error on the margin to the CT machine. She does not feel like this is progression yet. I was told that the study team wants to go ahead and give me two more cycles and do a re-staging on February the 1st.

Knowing the history of Cediranib and how it has acted on everyone else, I knew that I would develop tolerance to the drug at some point.

At the same time everyone on this board has been on my mind, so I ask Dr. Kummar if in February I show progression what could we do. She talked to me about two other protocols that they have either already started or are going to start recruiting for. I will go ahead and share that info with you all.

First protocol is A PILOT STUDY OF WEEKLY EZN-2208 (PEGYLATED SN-38) IN COMBINATION WITH BEVACIZUMAB IN REFRACTORY SOLID TUMORS. ((bevacizumab is avastin I believe) STUDY NUMBER 11-C-0042

second protocol is PHASE I STUDY OF HSP-90 INHIBITOR, AT13387, IN ADULTS WITH REFRACTORY SOLID TUMORS. STUDY NUMBER: 11-C-0029

SHE ALSO TOLD ME THAT THEY WILL HAVE A THIRD PROTOCOL READY IN ABOUT 4 MONTHS WHICH WILL INVOLVED ARQ197 AND PAZAPONIB COMBINE. ((sorry if I mispelled))


Okay, I have not done any research whatsoever on this protocols, I just got the info yesterday but I thought I did shared it with you all as soon as possible. Please feel free to comment on the above protocols and any knowledge that anyone might have. I hope this helps anyone out there.

PS. ALL OF THIS STUDIES WILL TAKE PLACE IN NIH AND DR. KUMMAR IS LEAD INVESTIGATOR ON ALL THREE.

BACK TO MY UPDATE.

I will be taking cediranib for two more months and hoping for stability on February. If instead of stability there is progression I will also be sending my scans to Dr. Litrupp and to Dr. Rolle in the next couple of weeks to see if a resection of all lesions in the lungs could be possible. Total lesions are about 20 to 25 I think on both lungs. I just want to be ready and have a solution at hand on February.

Also, I will be talking to Dr. Spunt in St. Jude to see if I could be schedule for a resection of the liver "unknown" mass after February if I am kicked out of trial. Liver mass has stay the same throughout. ooooooppppssss time for me to go since I have to catch the shuttle to the airport. Take care guys and I hope some of this info helps.

SIDE EFFECTS OF CEDIRANIB.

Olga the headaches are still there but they are not as bad and the balance problem is gone. I still get the diarrhea, tummy ache, and all the previous side effects listed. Overall, I am doing really good and feeling good too, I just want to be prepare for whatever news we have in February, take care everyone. Everyone is in my prayers also, ADIOS.

[Olga]

Mario - thanks for the update, everything you have posted is so valuable on multiple levels!
I have some comments here:

Re. The suspected progression - the suspected growth is within the normal deviations caused by the slice position of the scanner, so hope for the best.
re. choice of trials - ARQ197 AND PAZOPANIB looks the best to me esp. for the people with the known responses to cediranib (it is the same class of drugs as cediranib - TKI).
re. Dr.Littrup and Dr.Rolle consultation - it is a good idea to contact them but you have to understand that Dr.Littrup can only ablate 1-2 mets (not 25) so if you have a few that stand ahead of the bulk it is a reasonable approach to but a time, especially if there are only few mets that have more active growth. Dr.Rolle does not usually take people with the mets elsewhere besides of the lungs so you have to clarify the situation with the liver first - I do not remember if I asked before - did you have an MRI for it? If it was resected then he may consider doing the lungs (or at least if you had a tentative approval the surgeon to do that after the lung surgeries if they will be done).
I hope that the next scan will still be good and all of the above would not be necessary.

[Arch]

Hi Mario,

Thanks for the update. Its good to understand your options and be ready with an alternate plan, hope you will not need it now, we hope the stability continues for a long time.

Best wishes.

Arch

[Arch]

Wanted to add one more thing...

The pazopanib + ARQ197 trial which is expected to start at NIH sounds like a good option, Dr.Kummar told us that they are talking about a 3 months washout period for people coming off other anti angiogenic drugs like cediranib or sutent. So that might be a good time to plan any surgery.

Arch