[DONE] Sree on Cediranib

[Arch]

Dear Bonni,

Thank you for the wishes and kind words. I just received the CDs of Sree's latest scans and everything basically looks stable to me, infact the met that they seem to be referring to doesn't seem like a met at all to me, it is that spot which has stayed stable all the time(did not shrink on cediranib initially like the other ones), has a hazy boundary and I always thought was some scar from the previous surgery. All other mets have shrunk a little(in the first 2 cycles) and then stayed stable. But surprisingly, the PET report does talk about some mild increase in FTG uptake, something which was SUV 1.1 is now SUV 1.4 etc...so are these tumors becoming resistant to this treatment ? We are worried and have to start thinking about the next steps just incase there are any surprises in the next scan.
Anyway, we will stay strong and face it, I will be looking at options in the next few weeks just incase it is required. It'll be a big help if any of you can throw your ideas on what we should persue next, something that we could discuss with our doctors if required.

Our best wishes to all of you.

Arch

[Bonni Hess]

Dear Arch,
I don't know what the mild increase in the FTG uptake on Sree's most recent PET scan is indicative of, if anything, but before you get too worried about it, I think that you should contact Dr. Kummar to discuss your concerns with her. From our research and in our personal experience with Brittany's erroneous brain PET scan five years ago, we have found that PET scans can be very unreliable and are not always an accurate indicator of tumor activity, which is one of the reasons that insurance companies are resistant to paying for PET scans. However, with this unpredictable disease, it is always a good idea to have researched other possible treatment options, and to be prepared to pursue the most promising one in the event that the current treatment is no longer effective in stabilizing the disease. We have discussed this possibility with Dr. Sawyer who has advised us that if Brittany develops resistance to the Cediranib and heartbreakingly begins to have disease progression, switching to another strong tyrosine kinase inhibitor like Sutent or Pazaponib may help to stabilize the disease, and then if stability is achieved, switching back to Cediranib might result in a resumption of the previous successful response to the Cediranib medication. I will be holding very tight to Hope that your concerns regarding the implications of the increased FTG uptake on the PET scan are unfounded, and that Sree's next scans will show continued stable disease and more tumor shrinkage/necrosis. In the meantime I hope that you will contact Dr. Kummar to discuss your concerns and Hopefully alleviate your fears. Take care and keep this Board updated as you are able.
With special caring thoughts, healing wishes for Sree, and continued Hope,
Bonni

[Amanda]

Dear Arch and Sree,
I dont know what to say or think about the results of the PET I do not know enough.
I will say this.. i have never had a PET and because of what i have read here in this forum i wouldnt really think much about the results.
I hate it when the things seem to be going so great and then a dam scan comes and it is a question and then for a few weeks it is hellish waiting for explanations. Then they say it is fine and we are happy.
I wonder at times if they relise what an emotional roller coaster we live when they do that
I am sorry that you are both now concerned about yet another thing with this diagnosis and i am praying that it means nothing and that he will continue to do well on the drug.

I will be keeping your family in my prayers and thoughts as always.

[DottyW]

Dear Arch and Sree,
I agree totally with Bonni. Jordanne has had reports of uptake in a number of areas on each of her pt scans. After talking with Dr. Kumar and her oncologist, neither show much concern for these results. They said that almost any activity can light up a PT scan. Especially if there has been a surgery. They said that the results of healing from surgery can show up on PT scans for up to a year. Jordanne's tend to show up in her hip and thigh, where she had 2 muscles removed when she had her primary removed in October. Even a pulled muscle can cause some uptake as well.

So please discuss it with your doctor and Dr. Kumar and I'm sure they will be able to calm your fears. It definitely is a roller coaster ride of emotions so we have to just keep the faith and a positive spirit. Although it is a horrible disease to be diagnosed with, I am grateful that Jordanne was diagnosed just as this Cedirinab trial was starting. Many, like Brittany, have had to go through so many surgeries and trials before finally seeing shrinkage and stabilization with this drug. I just pray that those who are researching this disease will be able to learn so much from this trial and finally find an actual cure for our loved ones.

By the way, how wonderful was it that you were able to come to the US at this time as well! Coincidence? I think not! I'm just sorry that you have to spend the winter in Michigan Fall is beautiful there, though

Saying a prayer for you,
Dotty

[Arch]

Dear Bonni, Amanda and Dotty,

Thank you for your thoughtful posts and support. Reading PET reports have always been confusing, they are so vague and inconclusive,they mention some slight increase in uptake and then mention that it could just be asymmetric muscle movement and things like that. We had discussed it with our doctors earlier and know that I shouldn't be thinking too much about it at the moment and should wait till the next scan. But its just not easy staying calm and waiting. I find myself searching the net all the time, doing the same google searches over and over again, mentally planning what we should do next.

Soon after the diagnosis Sree took it very hard and I was very optimistic that things will be fine, that helped him cope and finally feel ok, but now he's this calm person living one day at a time and I'm always freaking out. Reading others posts and seeing how everyone else is coping has helped me a lot.

Dotty, our move to the US was not coincidental, we moved so that we could have access to the trials here. Winter in Michigan was bad, we moved here in peak winter, but its not totally new to us, we have lived in Chicago earlier where winters are equally bad

With best wishes to all of you..

Arch

[Fictional]

Great to hear that things are going so well for Sree. I would think that amount of difference is low on PET, but it's a good idea that it's watched. Aggressive PET SUV's are more in the 3-4 range as I recall.

It's a little unusual for ASPS lung mets to have an SUV value. K's last PET was for the R1507 trial (after 3 lung surgeries) and there was no signal over background.

[Arch]

Dear Friends,

Sree had his restaging scans on Oct 4th and all his lung mets appear to be stable. He has now started his 9th cycle on cediranib(30mg).

'F', Sree's lung lesions that are bigger than 1 cm are showing some mild SUV uptake, in the range of 1.2-1.5..is that unusual for ASPS? I remember his very first PET scan in Feb 2009 also showed some mild uptake in one of his lung lesions. Maybe his mets are not really very slow growing, from his thoractomies till Feb of this year when he was not on any systemic treatment, his mets did grow quite a bit.

With best wishes and warm regards to all of you
Arch

[Fictional]

Hooray! This is wonderful to hear, Arch and Sree.

Maybe the low SUV is at the threshold for detection and means stability.

[Olga]

That is an interesting question about the SUV uptake, 'F' - do you know if this met that has grown into the blood vessels - had any different SUV uptake then the other ones?
When Ivan had one bigger met (about 20 mm) 2 years ago removed by Dr.Rolle, he said that it was very much different from the rest of the mets and had very active signaling - it was located at the bottom of the left lung on the outside of the lung and the blood vessels were growing from the chest wall in the direction of the met. It was growing about 1.5 mm a month. Our radiologist failed to see its growth at one of the scans, said everything was stable and by the time or the next scan it has overgown the size and conditions good for the ablation, we had to go for the surgery. Ivan never gets PET scanned, I am thinking that may be there is an application for the PET to find the met with the more active growth potential (when it looks the same as the rest on the CT scan) and try to ablate it before it goes wild?
Arch, do any of Sree lung mets of the same size have different SUV uptake, I mean really different?

[Arch]

PET picks up a lot of things, not all are indicative of malignancy and many small ASPS mets don't lit up on PET at all. But what we get at NIH is a PET CT, a CT is done along with the PET. So when they see a lesion and a PET acitivity, that becomes relevant information. I went thru all his reports again and I notice that his biggest lung met had a SUV uptake of 2.2 when he entered the trial, that met was growing quite fast. The next scan(after 8 weeks on cediranib), none of the lung mets lit up on the PET and this coincided with a 26% reduction in size on the CT. Since then, the report is again talking about some mild uptake in 3 of his lung lesions, allthough the size is stable, I guess something undesirable is going on there. So Olga, as you said, it might make sense in being more aggresive in getting those mets ablated.

Maybe others on the trial can also look thru' your PET reports and see what it says..I don't have the complete details of his recent scan, we usually get it in the mail after 1-2 weeks, I'll look thru' them and let you all know if there are other mets the same size with a different SUV uptake. Maybe a time like this, when its still stable but PET has started showing mild activity would be a good time to start making a plan B.We are going to discuss this with our local oncologist.

[Bonni Hess]

Dear Arch,
I am so very happy and encouraged by Sree's most recent very good scan results showing continued stable disease after eight months of Cediranib treatment, and am so grateful for your continued faithful sharing and updates. I Hope that your concerns regarding the PET scan results showing mild uptake in three of Sree's lung mets are unfounded, but I agree that it is something that you should discuss with the oncologist in order to address your concerns and Hopefully alleviate your fear. As you said, "PET picks up a lot of things, not all are indicative of malignancy" so is it possible that the increased uptake could be related to tumor necrosis rather than tumor cell growth? It would seem that if the NIH Clinical Trial staff was concerned they would have discussed this issue with you. Our only experience with PET scans turned out to give false results which caused Brittany to undergo an unnecessary fourth brain surgery, but I know that PET scans can be an important diagnostic tool even though they are sometimes unreliable. Brittany does not have PET scans as a part of her Cediranib Clinical Trial in Edmonton, so I am unable to provide any information regarding comparisons, but this would certainly be informative and helpful if those on the NIH Trial would share their PET mets comparison information. If Sree continues to struggle with his concerning weight loss, I would encourage him to at least try medical marijuana or medical marijuana edibles as marijuana can be very effective in reducing nausea, stimulating appetite, and reducing anxiety all of which can help to prevent further weight loss and actually help him to gain some weight. Marijuana is a natural herbal substance and certainly better than some of the dangerous and very addictive manufactured opiate drugs which are prescribed by doctors for pain and anxiety.
In the meantime, please take care, know that I am sharing the great joy and strengthened Hope of Sree's wonderful scan results, and give him a happy hug from me.
With special caring thoughts, healing wishes for Sree, and continued Hope,
Bonni

[Arch]

Dear Friends,

Here's our update-

Sree is out of the trial after 10 cycles of cediranib(30mg). He had his scans today, the radiologist's report says that the lung mets are stable, but Dr.Kummar thinks that after the initial shrinkage(during the first 8 weeks), Sree's mets are slowly growing. They are still smaller than what he started out with, but she is calling it progression.
So as of today he's out of the trial. Has anyone on this NCI trial stayed on it for longer than a year ??

They have suggested that he either goes on sutent or any other clinical trial. We are confused and disappointed. Rebound growth is to be expected and so we need to get onto something else soon. Your valuable suggestions are welcome.

Regards
Arch

[Amanda]

Hello Arch,
I think Clair was on a year wasnt she?
She is still stable from what i remember ...
I am so sorry reading this that he was taken off the trail
I dont understand how no grouth from the report and they they are saying he is not stable?
I dont know of any drugs i am sorry .. but, i am sure soon others will be sugjesting some..
Sutent from what i have read seems to be the choice and then maybe he can return again to Ced?
There is a drug and i dont know the name is is like Ced and it is aproved now by the FDA :/

[Ivan]

Dear Friends,

Here's our update-

Sree is out of the trial after 10 cycles of cediranib(30mg). He had his scans today, the radiologist's report says that the lung mets are stable, but Dr.Kummar thinks that after the initial shrinkage(during the first 8 weeks), Sree's mets are slowly growing. They are still smaller than what he started out with, but she is calling it progression.
So as of today he's out of the trial. Has anyone on this NCI trial stayed on it for longer than a year ??

They have suggested that he either goes on sutent or any other clinical trial. We are confused and disappointed. Rebound growth is to be expected and so we need to get onto something else soon. Your valuable suggestions are welcome.

Regards
Arch

What did the doctor say he thinks they grew by? It seems kind of strange to pull the plug so quickly.

[wendik]

Dr. Spinoza at NIH told Matt that the protocol allows for 20% growth.....I don't get whats up with Dr. Kummar. I think she's so concerned with her numbers that she's losing sight that this drug is keeping MANY patients basically stable. Another reason to be leery of trials.Those in charge seem to forget that their patients are human. It's as if the DRUG is the patient....Sorry, I'm just a BIT jaded.