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Avastin with or without CPT-11/Camptosar/Irinotecan and MSKCC?

niji248
Posts: 5
Joined: Dec 2010

Hi everyone, I am new here, and writing in regards to my mother who is a non-small cell lung cancer survivor (currently 53 yrs old) of 7 1/2 years, who, unfortunately, is battling with metastasized brain cancer at this point.

She was first diagnosed with 2 mets in Feb 2006, and went through a round of WBR, and a long period of chemo, which she had excellent results and the 2 mets all disappeared. Then, in January of 2010, she was diagnosed again of recurring tumor, by her left thalamus. She had Cyber Knife, and had the tumor in control. Then, in November 2010, the tumor started growing again. She went through Cyber Knife again, but this time it didn't do much to shrink the size of the tumor.

Now, her oncologist put her on Avastin with Irinotecan, as known as CPT-11/Camptosar. She had 2 of each, every other week, and the MRI showed a 30% decrease in the size of lesion. We were ecstatic. Long story short, we were not happy under the care of her first oncologist, Dr. W, so we went to Memorial Sloane Kettering for second opinion. They first weren't convinced of Avastin or Irinotecan, but after the result of the MRI, they approved Avastin, but still thought that Irinotecan didn't contribute much to it. We were convinced that Avastin was the main player in the treatment, so we went along and switched over to Dr. N at Memorial Sloane Kettering.

After 3 treatments of Avastin alone, my mom had another MRI. It didn't show any reduction of lesion size. I am worried - I'm afraid that Avastin alone might not be as effective as combination therapy with Irinotecan or other chemo drugs. I asked Dr. N, and he explained that that's usually the case with Avastin - you get dramatic results in the beginning, then it stabilizes at a plateau. Eventually, the tumor will start growing again, so Avastin just hold it at bay for some time - as for how long, it varies from patient to patient.

There is also this article that's a bit alarming -

http://www.naturalnews.com/z024828.html

Well, the question is then, is it better to do Avastin alone or combination therapy? Does anyone have any experiences with Avastin? I would love to hear some feedbacks from you guys here. Thank you so much!!

Btw, is anyone being treated at MSKCC or NY Presbyterian/Weill Cornell? I have to admit that, I was not impressed by the service and care at MSKCC. It was a disappointment, we had such high hopes coming to them. They were disorganized (which is surprising considering their reputation) - they could not find the MRI CDs that we gave them when we first came for consultation 4 months ago, and they couldn't find the medical records that we brought to them and was gonna charge us 75 cents per page for their medical records, which is just plain outrageous. The doctor told us to go to the front desk, the front desk told us to go to medical records, then medical records told us to go to radiology, then radiology told us to go back to the doctor. I mean, come on now, let's not play this game of "not of my responsibility". We were supposed to get a call today for the next appointment for chemo, and never heard from them. 3:30 chemo appointment didn't start until 5:30 yesterday, and it was the same story for all three times we've had chemo there. Not to mention a certain assistant of Dr. N, who started yelling at me for calling the office too many times for questions and prescriptions. Again, just flat outrageous.

It is frustrating - not only do we have to fight this damn disease, we have to fight with the hospital! It is just really disappointing. So now I'm considering a consultation at NY Presbyterian/Cornell. Could anyone share any experiences?

Again, thank you so much for reading this long post. I hope to hear from you fellow forum-ers here.

3Mana
Posts: 829
Joined: Aug 2010

Hi,
I get scared everytime I see the word AVASTIN. My husband had nsclc, with lesions in his spine & 2 fractures in his spine.. He had 2 weeks of radiation on his brain & spine with good results. Then had his 1st treatment with 2 chemos plus Avastin. About a week later he started coughing up blood. So we went in before his next chemo and they did scans and said things looked good, but he was having a RARE side effect from Avastin. They gave him his next chemo without it, but one week later he hemorraged to death which was from AVASTIN. Hope I don't scare you by telling you this, but I feel if my husband would'nt have gotten that, I'd still have him today. He had been diagnosed in Jan. 2010 and died in March, 2010.
So think about it. Good luck to your mom. Carole

niji248
Posts: 5
Joined: Dec 2010

Hi Carole,

Thank you for your response and I have read your story in the other threads. I am very sorry for your loss... Chemo really is a gamble... my mother takes Avastin fairly well, I think. She doesn't suffer much side effects other than fatigue... I just really hoped that it'd have worked better for her as it is the last resort at this time. Again, thank you!

Jiang

Beckymarie
Posts: 358
Joined: Aug 2009

My husband was treated with avastin for a stage 4, inoperable GBM. He got dramatic results with the first round...greater than 50% reduction in the tumor. Next round showed some more reduction but not as great as the first round. We too were told that is the nature of avastin. We were also told that the tumor would eventually find its way around the avastin which did happen. There are side effects, hemorraghing (sp?) being one. My husband did have a severe nose bleed that required a trip to the ER. It took many painful procedures to get the bleeding under control. For us avastin was a time-buyer. I believe it extended his life for several months.

niji248
Posts: 5
Joined: Dec 2010

Hi Beckymarie,

Thank you for your reply. I'm wondering how your husband is doing now? Is he still progression-free at this point with Avastin? If so, how long did Avastin hold out for him so far? Thank you!!

Jiang

colleen B
Posts: 25
Joined: Jun 2010

We also had a very bad experience MSKCC and I think they have some people who are good at perhaps the scientific end of cancer research...but imo that hospital has problems.

My husband was a patient there and was admitted to the hospital in urgent care. He could not stand or sit for any length of time without pain. That pain was not controlled by morphine. I wanted an MRI but they did x rays and said he did not have cancer in his shoulders... so he was discharged from the hospital still in pain.

An MRI was finally done in the Basking Ridge Sloan...and there was cancer in two vertebra in his neck. He had radiation treatment and was able to sit and stand again without pain.

So how is it possible that the number two hospital in cancer treatment in the US was unable to diagnose cancer that had spread to two vertebra..and why did they not use an MRI?

We now go to Fox Chase in Philly and we are happier there. They listen to the patient more imo
I put in a complaint to MSKCC..but there is no reaction.

niji248
Posts: 5
Joined: Dec 2010

Thank you for your response. I'm glad your husband is being taken care of now at Fox Chase. Good luck to you and your husband! - Jiang

patriciam
Posts: 39
Joined: May 2009

Hi,
My 18 year old is on both meds and she showed an initial shrinkage of the tumor (AA3). She then went off the meds due to surgery and is now back on. I won't know if it is still working until her next MRI which won't be for a couple of months. She is doing ok, does have some side effects but not so serious she needs to go to the ER.
Good luck to you and all brain tumor patients and their families.

flanagan18
Posts: 3
Joined: Apr 2011

Looking back on our journey, here are things I think are good to do....
I am not out to scare anyone anymore than you probably already are. I just want to give some information. these are my opinions only, but they are from experience....

I would insist on an MRI every month. Make sure the scanner used for brain MRI's is a 3T scanner, it has to do with how detailed the images come out.
We got an MRI every month for 2 1/2 years.
This is a beast everyone is dealing with. Never relax, never think its under control, research, research, and fight and fight. We did for 2 1/2 years. Oh yeah, and try to laugh along the way...it helps!!

My husband had a gr 3 astrocytoma which turned to a GBM. We originally were told a 3 and a 4 are treated the same because a 3 becomes a 4 (I believe now that was correct). There is soo much I want to say here.
I would get on a chemo right away as fast as you can after surgery. don't wait weeks..and stay on it if its working. temodar is the standard drug. there are others...

Get molecular profiling done of the tumor tissue. It examines the tumor tissue and comes up with chemos that would be most effective to target your tumor type.

Avastin does control things for a while for some, but then it can go bad quickly. Others have been on it long with very good results.

Bleeding is a very serious side effect of Avastin.

I wish I knew why some people do better than others. I think that the location of the tumor is key to a better outcome.

I am not sure about diet, we asked this question many times and never got a clear answer. But new research is starting to show diet is helpful in fighting cancers. You have to search to find info. Its the one thing we didn't take seriously that I wish now we had.
Who knows whether it would have helped...it couldn't hurt.

flanagan18
Posts: 3
Joined: Apr 2011

Hi,
My husband was treated at both Weil Cornell and Sloane kettering for a brain tumor. While we felt Sloane was extremly organized I was disapointed to find out late in the game they didn't have the latest higher Mri scanner and therefore couldn't detect the tumor growth as well as the one at U Of Penn. Some dispute the fact whether it matters, but my brother in law who is an engineer said it does. (we went with his opinion)
Weil Cornell.. we were there for a procedure for my husband and were very pleased with how he was treated.
Good luck to you

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