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Update on my second clinical trial

peterhw's picture
peterhw
Posts: 69
Joined: May 2008

After 5 weeks of treatment with Erbitux, Sorafenib and Irinotecan, today I went to hospital to have CT scan. The preliminary result shows "significant decrease" of the size of nodules in my lung and the lymph nodes in my chest area. Liver lesions have not changed much in size, but the "activities" are lower. It could mean the cancer cells are dying. There is no new lesion. All in all, it is a good report. My research onc will email me a final report when it is available. So tomorrow I am going to start the second cycle of treatments. I am a little bit surprised by the results, because I am KRAS mutant. I was not expecting Erbitux to work on me. But I guess the Sorafenib is doing its job.

Peter

just4Brooks's picture
just4Brooks
Posts: 988
Joined: Jun 2009

Peter.... Great News. Keep up the good work my friend.

Brooks

AnneCan
Posts: 3692
Joined: Oct 2009

Congratulations on your good results; I am really happy for you! Thanks for letting us know.

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hello Peter from your "fellow mutant Lisa"!

I'm so glad to hear you're having success with this clinical trial! Interesting about how they're having you take Erbitux along with the others even if you're kras mutated. Erbitux ruined my skin- I had such a horrible, horrible acne with it that I don't think I'd ever want to try it again. I'm interested in the Sorafenib though and will mention that to my doctor. I'm going to 3 different oncologists this week to see what they have to offer me. I just finished taking an offline treatment of interferon and lovastatin and did not have good results. So, now I'm on to find what to do next.
Where are you doing this clinical trial? I'm in north San Diego, so I could go to San Diego, Orange County, or L.A. I don't remember where you live. Do you have any more info? Did you have to get genetic testing done to start this trial? If so, do you remember what the testing was?

Well, I wish you well as you continue on, that the tumors will all shrink away and/or die off! That's what I'm looking for to have happen in me,too!

Lisa

peterhw's picture
peterhw
Posts: 69
Joined: May 2008

I live in northern VA and have my clinical trial at Johns Hopkins. The purpose of the trial is to find out if Sorafenib combine with Erbitux will make it more effective not just for KRAS WT but also for KRAS mutant. It is a new trial. Not many participants yet. My research onc think I am the first one to report posititve results. They are all very excited. There is another similar trial at NCI, but without Irinotecan. I don't have to get genetic test for the trial. I am sorry to hear that Dr. Cantrell's treatment does not work for you. There are so many clinical trial going on now for mCRC. I am sure you will find out that works for you.

Peter

coloCan
Posts: 1956
Joined: Oct 2009

Hoping for nothing but positive results for you.....Steve

clier
Posts: 29
Joined: Feb 2009

Any idea if this trial is closed? I just left a msg w/ their scheduling dept & hope to hear back tomorrow. I'm in my second 6 month cycle for Stage IV Colon, mets to liver and most recently to lungs. Did surgery to remove primary, then 6 months FolFox, then 2 courses of Radiospheres & now am finishing treatment #4 of a 6 month cycle of Folfuri. Onc is suggesting experimental/trial treatments and I am very encouraged to hear about yours. Hoping it's still open, at JH or somewhere!

Best to you

Chris

peterhw's picture
peterhw
Posts: 69
Joined: May 2008

But it looks like they are not recruiting participants.
see:
http://clinicaltrials.gov/ct2/show/NCT00134069

Peter

clier
Posts: 29
Joined: Feb 2009

Any idea if this trial is closed? I just left a msg w/ their scheduling dept & hope to hear back tomorrow. I'm in my second 6 month cycle for Stage IV Colon, mets to liver and most recently to lungs. Did surgery to remove primary, then 6 months FolFox, then 2 courses of Radiospheres & now am finishing treatment #4 of a 6 month cycle of Folfuri. Onc is suggesting experimental/trial treatments and I am very encouraged to hear about yours. Hoping it's still open, at JH or somewhere!

Best to you

Chris

mom_2_3
Posts: 965
Joined: Nov 2008

I am very happy that you are having great success with this treatment!

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

Great news Peter! So exciting to see some good results for KRAS mutant folks!

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

Your patience and perseverance is now starting to pay off for you...I am so glad that you are making a good headway with your treatments. Patience my friend, it serves you well......Love and Hope for you, Clift

grammadebbie's picture
grammadebbie
Posts: 471
Joined: Jun 2009

So happy for your good results. You are truly an inspiration and I admire your tenacity in fighting this monster and not giving in. I Pray things continue to kill all those cancer cells.

Blessings to you,

Debbie (gramma)

Fight for my love
Posts: 1530
Joined: Jun 2009

Congratulations!Actually,I checked your blog yesterday,I didn't see any update,I was wondering what was going on.I am so happy to see your update today here.I hope this clinical trial will take care of all the cancer nodules and bring you to a cure.Best luck to you with everything.Take care.

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

I hope this continues on this path for you.....exciting!

peterhw's picture
peterhw
Posts: 69
Joined: May 2008

Isn't it amazing. I got the good news right after the Chinese New Year. What they said "A new year, a new fortune" is true. I wish everybody has godd fortune in the year of tiger.

Peter

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

in the Year of the Tiger!

all the best, Leslie

tootsie1's picture
tootsie1
Posts: 5065
Joined: Feb 2008

Peter, that's great! I'm so glad you're getting such good results.

*hugs*
Gail

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Peter,
That is good news. I am so glad that things are moving in the right direction. Thank you for sharing with us.

Aloha,
Kathleen

ginsec
Posts: 1
Joined: Dec 2009

Hello peterhw

I am very glad that you have such a good response
My father is exactly at the same situation with lung mets from november of 2008
but the problem is that we live at Greece (very far away) and here we don't have hospitals participating at clinical trials neither access to the latest drugs.
Also we don't have the financial status to move to USA.
So i would like to ask you if can ask your oncologist if they see such good results (as yours) also with other patients who have exchausted the standard protocols.
If they see that sorafenib is working with erbitux in kras mutant colorectal cancer patients then our oncologist here in Greece could try this to my father.
I don't want to loose him and i am trying to learn whatever that may give him extra life.

Thank you very much

peterhw's picture
peterhw
Posts: 69
Joined: May 2008

Hi Ginsec,

There are several trials that invloved Sorafenib and Erbitux or Irinotecan. Because these are ongoing trials, there are not many data available yet. But on theory it looks very promising. Here are some info that you can talk to you oncologist. From what I know, the pre-clinical data was very good, that's why they proceed to the phase I/II trial.

The trial that I am with right now, http://clinicaltrials.gov/ct2/show/NCT00134069
This on does not have Irinotecan, http://www.cancer.gov/clinicaltrials/NCI-06-C-0164
This trial is in France, http://www.clinicaltrials.gov/ct2/show/NCT00989469

Hope these info is usefull for you.

Peter

peterhw's picture
peterhw
Posts: 69
Joined: May 2008

Thank you all for the encouragement. I have just started the 2nd cycle of treatment. So far so good. No severe side effect yet. Before this trial, I was having severe liver pain. My liver was swollen and press against the rib cage. I am very happy to report that after 5 treatments, the pain is gone completely. It is another sign that the treatment is working. I will keep on fighting and will let you guy know if there is any new development.

Peter

Brenda3.16
Posts: 211
Joined: May 2009

John,

I am really happy to hear your good news. I also have mets to the liver and lungs, and kras mutation. I will be very interested to follow your progress.

Is your oncologist at John Hopkins ?

I live in Pennsylvania and have been looking for a different oncologist at a big facility. John Hopkins is one I have been thinking about.

Brenda

peterhw's picture
peterhw
Posts: 69
Joined: May 2008

Yes my oncologist is at Johns Hopkins. My onc is the one responsible for all the clinical trials at Hopkins. She used to work at NCI. Hopkins recruit her to manage the clinical trial. If you are not too far from Baltimore, I wiil highly recommend Hopkins. Maybe you can set up an appointment for 2nd opinion. Each Dr. only work on one specific cancer. My onc only work on CRC, some other group take care of breast or lung. so when you make appointment, they will be verey specific about what kind of cancer you have.

Peter

dorookie
Posts: 1736
Joined: Jul 2007

I am so happy you are having such good results with your treatment and that you are not in much pain. Stay strong, and know we are all pulling for you.

*HUGS*
Beth

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

This is wonderful! No bad side effects, and it is taking away the pain! That must mean the liver swelling has gone away, or at least mostly resolved. I hope this continues to work well for you.

clier
Posts: 29
Joined: Feb 2009

Peter, your trial inspired my wife & me to look into trials. I am KRAS mutant, Stage IV Colon w/ mets in liver & now in lungs. Asked J Hopkins if I could join your study, but it's closed. Still, I'm submitting med records to JH, MD Anderson & Mayo to start with, in hopes that I'll get somewhere. Thanks for your story.

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