Ola from Hawaii. Dx July2012

[Bonni Hess]

Olga has made a very good point Keola. You should not go into the NIH Cediranib Trial thinking that you may have the option to at some point temporarily discontinue taking the Cediranib to have your primary resected whether it has shrunk or if it just isn't responding to the drug because you probably would not be allowed to resume the Trial since this is a Phase 2 Trial with a different protocol than Brittany's Phase 1 Trial has. I echo Olga's question regarding the reason/rationale for not resecting your primary prior to beginning Cediranib since I don't know of any cases where the Cediranib has significantly shrunk (more than 40-50% shrinkage) or completely destroyed the primary tumor, so if the tumor is in a resectable area, it seems it would be best to surgically remove the primary before beginning Cediranib to reduce the tumor burden and enable the Cediranib to be more effective in fighting the disease. As Olga has said, this is an important question for you to ask, and issue to address and discuss with the NIH Clinical Trial staff when you meet with them.
With deepest caring, healing wishes, and continued Hope,
Bonni

[Bonni Hess]

Dear Keola,
I Hope that this finds you having had a good trip to Bethesda to confer with the doctors at NCI regarding your possible participation in the Cediranib Trial there, and having now made a decision regarding which treatment that you will pursue. I am anxious to hear what their recommendations were and what decision you have made, and will be looking forward to your next update when your time and the situation allow. In the meantime, please take care and know that my special thoughts and very best wishes are with you.
With deepest caring, healing wishes, and continued Hope,
Bonni

[Olamon]

ALOHA all. writing to you from Hawaii just to update everyone on whats been happening. Well in Sep.2012 i agreed to participate in the Cediranib clinical trials at the NIH in Washington DC. I decided that there needs to be SOME type of research done on this cancer, and so far its been going really well. I am going on my 7th month of taking 20mg of Cediranib and taken 3 scans (1 every 2 cycles) with no new mets or growth in any tumors. YAY FOR STABILITY!!
The side-effects are honestly not as debilitating as some may think, with the thought that most patients with cancer will change their diets. I have noticed some effects in my stomach such as cramping, pains, and diarrhea; however with the other meds given, my body is doing fine. Blood work/urine taken every month, and my body still feels as healthy as I had before the cancer. I even gained a few pounds and put on some muscle in the process. I cant say that i was able to keep my life the same without the true help of Medical Marijuana. If your state allows for you to grow, i suggest it for all patients going through any type of cancer treatment. It allows me to keep my life quality and most importantly lifestyle in general. Allows me to eat, exercize, do work, and even just to enjoy a family get together. I am hoping that this treatment will inhibit the further spread of this cancer and eventually help me to remove the original site at the Lthigh. I hope that this information helps someone and that this research will benefit others who seek some kind of answer to this seemingly "impossible" cancer.

Mai ka naau,(From my depths)
Keola.

[Bonni Hess]

Dear Keola,
Thank you for writing to update your situation and for so thoughtfully sharing your invaluable anecdotal treatment information. It was so very good to hear from you after your long absence from the Board and to hear the very good news of your seven months of disease stability since beginning the Cediranib Trial . I am so grateful that you are tolerating the Cediranib so well thus far, and am wondering if that could be attributed to your only being on a 20 mg. daily dosage instead of the usual 30 mg. that most patients, including Brittany, have been prescribed in previous Cediranib Clinical Trials. Actually, when the Cediranib Trial first started several years ago, the prescribed daily Cediranib dose was 45 mg., but it was soon found that high of a dose was too toxic and caused too severe and intolerable side effects so the prescribed dose was reduced to 30 mg. instead. Because of the chronic, severe, and debilitating side effects that Brittany has suffered for the past nearly 47 months since beginning her Cediranib Trial, we have discussed reducing her 30 mg. dosage with Dr. Sawyer. However his concern is that if she subsequently experienced disease progression on the reduced dosage, then due to the Trial protocol she could unfortunately not resume the higher dosage, and since Cediranib is not available off Trial as a prescription FDA approved drug, she could face increased disease progression with no option to return to Cediranib to try to re-stabilize it. Hopefully it will be found through your Trial that 20 mg. is adequate to stabilize disease progression and provide shrinkage/disappearance of the tumors. Are all of the patients who are participating in your NIH Cediranib Trial receiving the reduced 20 mg. dose? Also, have you had any shrinkage of your primary tumor and/or your lung mets thus far?
Olga will probably move your post to the Cediranib topic so that people can more easily follow you there. Please keep the Board updated on your treatment experience and results, and know that my very best wishes and most positive thoughts are with you. Take care Keola and keep in touch as you are able.
Sharing your good news with great joy and reaching out to embrace you with happy hugs, special caring thoughts, healing wishes, and continued Hope,
Bonni

[D.ap]

Keola

Hello. My name is Debbie and I am Joshuas,( Josh) mom. Thats awesome to hear of your stability ! The joys of life that we choose to focus on to aid in keeping us upbeat in a time that could be seen as less than happy times with this disease.
I am new to the clinical trial system and would like to know the goals that you and the doctors are working towards while taking Cediranib . How long with the drug? How long before the primary is removed? Will you remove any lung tumors?

Josh was dx in September of last year and has had his primary removed with negative margins from his left upper thigh and has had his left lung treated in Germany by Dr Rolle. The surgery removed 77 tumors.

We choose not to use radiation on his primary as there was a 15% chance of the reaccurance of the cancer to that area. Also we are of the understanding that radiation has been shown to cause some growth in this cancer so that was one part of our treatment we choose to eliminate from our treatment. It doesn't mean that we will ignore that area as it is very important that all areas of the body need to be watched for the rest of yours and Joshuas life.

The lesson that we have learned is that you need to have a good radiologist who can read the scans,and report them accurately to know how many tumors there are and at what rate they are growing.
When we left the states to go for the laser surgery we were under the impression that Josh had maybe a third of the tumors in his lungs but after surgery the true reality was that there were more than 3 times as many as was reported by a radiologist.

The tumors are generally small and hard to see as I understand it but can grow rapidly if not watched closely by comparison scans. So be advised to ask repeatly for a review with the oncologist of your every scan. There should always be a report as well as the scan available to you and your Oncologist.

It is nice meeting you. Stay strong.

Sincerely

Debbie

[D.ap]

I incorrectly said the left leg when the correct leg is the right upper frontal area

Debbie

[Olamon]

ALoha all! its keola again coming back at you. I havent been on here for long as i have been soo busy living life! i have been on cediranib for 8 months now with scans every 2 months. So far so good with the treatment as the lung mets have stopped growing. Side-effects are literally minimal due to the healthy diet and lifestyle we live here in Hawaii. I may have actually put on a few pounds of muscle since starting the trial. Just wanted to keep people here updated as I have been getting concerned emails. Mahalo for all your love and support and we can all overcome this. The plan is to hopefully shrink the tumors enough so that removal can be a bit easier, well at least i think so.. The doctors at the NCI are all so helpful and anyone can tell they love their jobs.
Nau no,
Keola K.

[Ivan]

Awesome news! Do you have a plan in place for removal in case of successful shrinkage / stability?

[D.ap]

Keola
How's the trial going for you ? Are the scans showing progress?
Just wanted to let you know we are all thinking about you

Sincerely
Debbie

[KeOlaK.]

Aloha all. This is Keola coming from the island of Oahu. Well the 2 month scan this last month showed that my the tumors had grown most notably the primary tumor in my left thigh. So after 10 months of stability, the dream came to an end. The initial plan was to continue taking Sunitinib which may work just as well as the last pill, but I have been contemplating removing myself from the study and taking my health into my own hands. Removal of the primary has always been a top priority on my list. My mind is racing and the nights are hard to sleep, I would like some help on the situation from those who would understand most. Love to all who are going through the same.
Me ke aloha(with love),
KK

[D.ap]

Keola
Thanks so much for your update. I am sorry that it was not completely good news with the last scan reading.
You are asking for opinions so here it goes
You and your family need to come to an agreement that the operation on you leg , your primary tumor, needs to be looked at again to determine just how it can be removed.
This forum has a library tab at the beginning of the website with a whole host of doctor written papers describing the importance of removing the primary tumor.
Go back to your doctor with these papers in hand and let him know how serious you all are about this surgery. Even in our area doctors have no clue what they are looking at and treat ASPS like it will take you tomorrow. It normally is a slower growing sarcoma but however it can not be ignored. Again, it can not be ignored. If he refuses to even discus the surgery you all will need to look for another doctor to consult. It doesn't mean you can't use your current doctor to consult with if you have a good working relationship. The more doctors to help with this awlful disease the more eyes and knowledge you have to better treat the ASPS.

Arm yourself with information.

You and your family will be the best team in this fight.

With all my love

Debbie

[D.ap]

Hello Keola

Haven't forgot about you. Hope your scans and treatments are going well

Write us all a line when you get a moment

Love
Debbie and family