T-DM1 & Pertuzumab Trial Update

[KDR]

Hello, friends,
I am writing to let you know that T-DM1 and Pertuzumab have proven efficacy in my case thus far. I have been on MSKCC's 09-093 trial since December 2011, which began with Taxol and the latter two drugs. It has not been easy, but the Taxol was dropped after three months or so. During this time, I experienced Taxol-recall and have neuropathy in my fingers and toes and also had it in my optical nerve causing loss of sight in the right eye for a bit. Once the Taxol was removed, that problem, that very scary problem, was resolved. I still have neuropathy in the fingers and toes and it booms again after each treatment of T-DM1. I am treated weekly (dose escalation study) and have blood drawn weekly.
I also developed during the first month of this trial an intestinal aneurysm with a clot. This is a rare condition called SMA. We were able to make this dissolve by my self-injecting blood thinners. Instead of being scanned every six weeks, I had to be scanned every four until the aneurysm dissolved. Ultimately, I landed in the hospital for four days with a nosebleed that wouldn't stop, so the blood thinners were stopped. Taking a single baby aspirin each day now keeps things in check.
So, on the whole, even with a few major bumps in the road, I am currently NED, and continuing on with T-DM1 and Pertuzumab. I am hoping that Pertuzumab will be available to all who need it without the bureaucracy, and am happy to know that T-DM1 will be available soon for all without the rigorous demands of a trial. Let's keep working on the boundaries of Pertuzumab. Collectively, we can make a difference.
Yours in faith and love,
Karen

[jacqueline1102]

Hello Karen,

I thought you might find this article interesting. You may already have heard this through your local news. I hope your NED continues forever. Take good care.

Jackie

Ruling Adds Cancer to 9/11 Health Benefits
Article date: September 11, 2012

By Stacy Simon

Fifty-eight types of cancer are now on the official list of covered illnesses for people who were exposed to toxins at the World Trade Center site after the attacks on Sept. 11, 2001. The ruling follows the recommendation of an advisory committee of experts who reviewed scientific and medical evidence.

This means people who developed cancer after exposure to the toxic ash can apply for benefits from the World Trade Center Health Program. The program was created with a $4.3 billion fund set up to compensate people – including rescue workers, volunteers, and residents – who became sick in the aftermath of the disaster.

The dust and smoke from the collapse of the twin towers contained asbestos, lead, and other cancer-causing materials. However, it’s not easy to prove a diagnosis of cancer came from exposure to the dust and smoke, and not from some other cause. Last September, medical researchers from New York City published a study showing that firefighters who responded to the attacks had about a 19% greater risk of developing cancer than firefighters who did not work at the site. But they were cautious about the results because they followed the firefighters for just 7 years after 9/11, and cancer can take decades to develop.

In a written statement, World Trade Center Program Administrator John Howard, MD said, “We recognize how personal the issue of cancer and all of the health conditions related to the World Trade Center tragedy are to 9/11 responders, survivors and their loved ones.”

Among the 58 cancer types to be covered are breast, colon, lung, skin, ovarian, esophagus, and stomach cancer. There was not enough evidence to include prostate, brain, or pancreatic cancer on the list. These and other cancer types could be added later if more evidence is found.

Reviewed by: Members of the ACS Medical Content Staff

ACS News Center stories are provided as a source of cancer-related news and are not intended to be used as press releases. For reprint requests, please contact permissionrequest@cancer.org.

[KDR]

Jackie,
The right decision was made by NIOSH, Dr. Howard, The Feal Good Foundation, et al. Thank you so much for posting.
Karen

[michka]

Thanks Karen for sharing and giving hope to many.
You went through horrible moments but you resisted and won!
You had a very high dosage of TDM1. Do you still do? Do they know what side effects come from TDM1 or from Pertuzumab? How do you feel today?
Michka

[Ellie F]

Hi Karen
Tried to post this yesterday but seems it got lost in cyberspace!
Thank you for the update. You have had a rocky road but your courage and tenacity is inspiring to so many. People like you trailblazer for us all and share so generously your experiences. I pray you will remain NED forever and that our scientists soon discover a way to keep bc at bay permanently
Hugs
Ellie

[NEDenise]

Karen,
You are such an inspiration to me! I want to be just like you someday...NED...brave...knowledgeable...as beautiful as Barbara Feldon!
Love you, my friend!
Denise

[Lori R]

Dear Karen,
Thank you again and again and again for the information you provided as I pushed through the process to be included in the Phase II - Taxol + TDM-1 + P (or not) trial.

It is through the Phase I trial that you were on, that I am now on a Phase II trial that is less demanding.

I am glad that you shared some of the challenges faced on the trial along with the great news.

NED forever my friend.....Lori

[Mandamoo]

Karen you have had a rough time but I am so pleased that you remain NED. It is efforts of all of us undergoing trials that advance knowledge and care - maybe one day a cure!
I just think things are going to be good Karen!
Thanks for the update - love to you. Xxx

[KDR]

Hello!
I am currently on a weekly dose of T-DM1 at 2.4 mg/kg. 09-093 is a dose escalation study. The three-week dose is, I believe, 3.6 mg/kg. Yes, it is a lot of medicine, but is doable. The neuropathy and the hit one's platelets take are the two most outstanding side effects I have persistently. I follow Andi's and Phil's recommendations for supplements. Otherwise, once the Taxol was removed, the more serious of side effects were resolved.
No, it has not been an easy road, but it is looking good from this vantage point. Really, really good. I watch everything I put in my mouth. I try to diet control a lot of what plays out in this game: anxiety, stress, strength, and progression itself.

Pertuzumab is being studied now on a broader radius, and although that will take time, it is what's required by the in-place FDA. Let's hope that some of the rules are modified quickly; let's hope that everyone who needs this drug may have it administered on demand.

Lori-you are so welcome...that's why we are here...nothing more or less...but to be here for each other. Think nothing of it. Let us know how YOU are doing. Promise?

Denise-funny, isn't it, how I feel the same about you! Hope you are better and better each and every day <3

Amanda-you just hang in there...I have said from the start that I believe in The Cure and I mean it--I just know you are gonna be good-

Michka-how have you been doing-my dear Michka-one of my first friends here-I remember your flower avatar (daisies?), well, I am well, allow myself human thoughts, but try to stay in the supernatural with the superpowers...a few muscle aches included, but otherwise alright, dear one.

Ellie-through my experiences I have learned to smile in the face of adversity. This will be no different. Thank you for your kind words.

Love to all,
Karen

[Ellie F]

Hi Karen
Don't want to hijack the thread but could you tell me which supplements have helped your platelets? Since being on long term herceptin I have really struggled. My onc seems to think its not a herceptin side effect but I am not convinced it is. I have tried to cut out known supps like turmeric but it hasn't changed my platelet count at all.
Many thanks
Ellie

[KDR]

Hi, Ellie,
That's quite alright. I have copied some information for you below. It has been suggested that shark's liver oil is a major help, as is steak (this coming from a long-term T-DM1 patient). Most doctors will agree there is not much you can do AT ALL to boost platelets, that it is a natural process. However, I do follow most of the information below. As I said, I believe diet is a major factor in well-being.
Step 1
Consume at least 8 mg of iron if you are a male adult age 19 and older, and 18 mg of iron if you are a female adult age 19 and older each day. Iron is essential to the development and maintenance of healthy platelets and blood cells. Iron is commonly included in multivitamins in smaller quantities. However, you can also consume foods such as oysters, beef, clams and turkey. Chicken liver contains some of the highest concentrations of iron, containing 12.8 mg per 3.5-oz. serving.
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Step 2
Eat a diet rich in foods that contain folic acid. The Office of Dietary Supplements recommends that adults consume 400 mcg of folic acid every day. Folic acid also supports healthy cell development and plays a vital role in the development of the spinal cord and neural tubes, which is why it is so important during pregnancy. Fortified breakfast cereals can contain as much as 400 mcg in each 3/4 cup serving. Beef liver, black-eyed peas and spinach all contain approximately 100 mcg of folic acid.
Step 3
Aim to consume at least 2.4 mcg of vitamin B12 each day. Vitamin B12 helps to make DNA and prevent anemia. According to the Office of Dietary Supplements, consuming 2.4 mcg of vitamin B12 can help you to increase your platelet level. Beef liver and clams contain the highest concentrations of vitamin B12 in food. Vitamin B12 can also be found in foods such as fish, meat, poultry, eggs and dairy. However, vegetarians might need a supplement to get enough.


Read more: http://www.livestrong.com/article/37...#ixzz26giiJwxE

I have never heard that turmeric was good for platelets, but is a very good supplement in overall health in fighting the cancer state of mind.

Warmly,
Karen

[Pray]

Thank you so much for your posts. You are so appreciated and needed!