NYC - Here we come!

We’re off to New York City today! My parents are meeting us there and I have an appointment at Memorial Sloan Kettering tomorrow with Dr. Sabbatini. MSK is one of the best cancer hospitals in the country and we have been wanting to go for awhile now. We decided to take a few days in New York and so we rented a two bedroom/two bath apartment in mid-town until Sunday. It is actually less expensive then two hotel rooms and the apartment is about 1300 sq ft. Should be fun!

I haven’t been out of the house much these past weeks so I am a little apprehensive about traveling and being away. Isn’t that crazy? I used to travel for my work all of the time and always loved it. I do have that excited feeling about getting on the airplane today and going somewhere different. I have been to NYC many times but Sean has not and so it will be fun to see it through his eyes.

What I hope for during this trip is to get another perspective from an expert doctor. When we realized the Carbo/taxol wasn’t working in September we talked to Dr. Sabbatini on the phone and his first comment was that I hadn’t tried that much yet in terms of treatment. From my perspective, I felt like my options were quickly running out and after I talked with Dr. Sabbatini, I felt more hope. I would also like to have some fun, take my mind off of the situation and enjoy.

As far as the Doxil is concerned, I do think it is working because I was starting to feel bloat and pain in my abdomen and now, it feels like it is loosening up a bit. I am cautiously optimistic about it as I seem to feel different day to day, but I do feel better overall. Not as good as I did this summer, but I think it is improving. This would be really incredible because then I know I have this option if the PARP doesn’t work for me.

I will give an update next week…

Love,
Marissa

P.S. Thanks so much Bonnie for the lovely flowers and to Margaret for always thinking of me and treating me to dinner every now and then!

Parp Inhibitor Trial

I have been accepted into the Parp Inhibitor trial at the University of Wisconsin (UW). I will know for sure next week depending on if there are any toxicity issues that come up that would postpone the next dosage. Otherwise, I will start on November 13th. Yes, that would be Friday the 13th… ugh.

This is a phase I trial which means that it has not been tested on humans before. The reason not to worry too much is that there are other Parp Inhibitor trials that have gone through phase I and even phase II trials from other pharmaceutical companies and the doctors say they are basically all the same. This trial is a Merck product.

Parp is an enzyme that heals cells in the body. For some reason, the Parp inhibitor seems to block the healing of cancer cells in some people who are BRCA 1 and BRCA2 positive, killing off the cancer cells while doing minimum damage to the healthy cells. I am BRCA1 positive.

The entire trial process is all about timing. They have to have an open spot and I have to meet the criteria to get in. My doctor feels this is a good opportunity for me and I feel good about trying it. It is too soon now to tell if the Doxil is working but I can always go back on the Doxil and I can’t always get into a Parp trial.

We will go up to Madison and stay with our friends Jill and Tom who live in Middleton which is just north of Madison. We are so grateful to have a place to stay vs. staying in a hotel room. It will make the situation so much nicer for us. Their home is tranquil and beautiful and we love their company and they are so happy to do it… friends are the best, aren’t they?? Did I mention that Jill and Tom are amazing cooks as well…? We may never go home!!

We will be in Middleton for the better part of a month which is cycle I of the trial. I will spend two days during that timeframe overnight in the hospital for round the clock testing and otherwise I will be outpatient. They basically test me all of the time for toxicity and effectiveness traits. If the Parp works I get to stay on it. If it doesn’t, I will go back on Doxil or try something else. I still have options and that is the most important thing right now.

The past week has been tough physically. The CA-125 jumped from 258 in September to 1338 six weeks later. This seems like a big jump, doesn’t it? I can feel the tightness and the change in my digestion so I have changed my diet radically to help prevent any blockages from happening. I am hanging in there though and grateful on a daily basis to have Sean, my friends and family supporting me.

More later… Love, Marissa

Co-existing with Cancer

Hello to everyone and thanks to all of you that have reached out to see how I am doing and letting me know you are out there, thinking of me and praying for me. It has been the most difficult two months thus far with this diagnosis and I finally decided to go back to my spiritual advisor and counselor, Susan. I have known Susan for over 10 years. I met her when I was divorced from John that many years ago and I truly love her and trust her.

So far so good. This week was my second session. I just needed to cry and talk about how incredibly scared I am of this disease getting the best of me. Not just physically but also changing who I am as a person. Susan really believes I should use the blog in a more creative way and so you may see more writing in the future… I know many of you will be happy about that.

The Doxil treatment was not as benign as I had hoped. It feels different than the other chemo but it still feels like chemo. I also think I am feeling the effects from the cancer. My abdomen is getting tighter again and I am feeling a little nauseous after eating. Right now I am not sure if it is the chemo or the cancer making my intestines less flexible. As I mentioned in my other blog entries, I really won’t know how this is working from the CA-125 and so how I feel and a future CT scan is how I will know. In the meantime, the Parp trial is ready for me to come in November and since it is experimental, I am not sure if I am ready to do this or not. There is no one who can tell me what is better to do and so these decisions are so difficult and cannot be postponed. Today (Thursday) is a week later and I am feeling better so that is good. I lost a few pounds this round but I have another three weeks to go before the next one and so I hope that I can build up my strength again.

When talking to Susan yesterday, she asked me how I have changed from the cancer and I remembered the things I used to think about. My next vacation (always a priority!!), my next goal at work, a new house, new clothes (retail therapy is still a really good thing for me even now), perhaps even compare my life to someone else (a demon from growing up on the North Shore)… and now – I think about having enough time to enjoy my husband, my friends, my family… maybe go somewhere on a trip with Sean at least one more time, will this be my last Halloween, Thanksgiving, Christmas… I am a sponge, taking in everything and wondering. This situation takes me to a deep and sometimes dark place but it also does bring more clarity to my life. I need to allow myself to feel these feelings without paralyzing myself with fear and let me tell you, it is hard. I always felt that I could make a situation better, any situation. If I analyzed it, took responsibility for my part in it, I could solve it. This approach just doesn’t work here and I have felt at a loss as to how to handle it. I am entering a new phase where I learn to co-exist with cancer, always hoping to eradicate it, but learning how to live with it.

Let’s hope over the next few weeks Doxil is my friend and cancer’s enemy….

With Love,
Marissa

Update

Tomorrow I start a new chemotherapy drug called Doxil. If I am fortunate, the drug can be very effective with little in terms of side effects. If not, there are some side effects that will be uncomfortable such as peeling skin on hands and feet, mouth sores, etc. Since there is no crystal ball, there is no telling what will happen.

The last week or so I have started to feel some tightness in my abdomen and so it is definitely time to get started. Doxil doesn't always impact the CA-125 immediately and in some cases, people did not experience a decline in their CA-125 until after treatment was finished and successful. CT scans will need to be used to determine effectiveness and I think I will feel it if it is or is not working. The treatment is once a month and should not impact my hair (which is coming in at a turtles pace)and in general should be benign compared to the other chemo. Lets hope it works!

I am also on a waiting list for a Parp trial at the University of Wisconsin if this drug doesn't work and there are other options in general so we will keep on going here until we find the answer.

I am looking forward to getting on something new as this waiting around is for the birds, it really sucks not to know what I am doing. I am working hard to keep my spirits up and my employer has been very understanding by allowing me to continue on disability while I figure out how to contain this disease.

I am not sure what I would do without my amazing husband. Sean is there for me every minute of every day and he is always positive, encouraging and hopeful. I am so lucky to have him as my partner. I love you so much honey! xoxo

Keep on praying and thinking of me out there... I need all of the good spirits I can get. I will keep you posted on how things are going.

With Love,
Marissa

9/26 Update

A lot has happened in the past two weeks. It seems that I am now platinum refractory which means that my cancer is no longer responding to the Carbo drug I have been on since April. So, what happens next is anyone's guess right now. What I do know is that I have options which is good but not necessarily easy when it comes to making a choice of what to do.

There is still some standard treatments that I can try which include other chemo agents that are not platinum based such as Taxol and Doxil. They have their own potential side effects which is something to consider. There is no guarantee that these will work but they certainly could work, at least for awhile. The other options are trials where there are experimental drugs and/or drugs that have yet to be approved by the FDA and there are hundreds of options here but I do not qualify for all of them. A few exciting options are the Parp trials and the trials involving a drug called Avastin. The Parp has shown to work with BRCA positive cancers such as mine and Avastin is a drug that I would like to use but it has a risk of bowel perforation and right now, the cancer is on my bowel so this is not ideal at this time. The trial drugs seem to have fewer side effects if they are effective and so this is something that I would like to try. There is a Parp trial at UW (University of Wisconsin) that opens in December. I went up there Tuesday and I am now on the waiting list. I could stay with my friends Jill and Tom who live in Middleton which would be amazing. Short term I have to go on something to keep the cancer from growing but still not sure what one I will try.

I am waiting for a few more opinions - Sloan Kettering, University of Chicago (different doctor than Dr. Yamada), MD Anderson and then we have calls into other hospitals that have trials I may be interested in.

The past few days have been very intense for me and my family and I really haven't been reaching out to anyone right now. The past few days I have been sleeping because of my general lack of sleep and anxiety that I have been going through. I think next week I will be better as I need to make a decision in the short-term here and I am always better when I am executing the plan vs. trying to determine what the plan is...

A friend of a friend of mine, who happens to be a cancer survivor and who has more life experience than I do, reminded me this week that if I can hang on through the difficult parts, there can be some amazing things that come out of these tough times. He is right and it is not easy but it is not impossible either. Just know that I am regrouping now and will be back on the battlefield here soon. This seems to be my calling and I will answer to it as long as I am able.

Thank you for your love and support.

Love,
Marissa

Update - 9-18-09

Ok, well here is the update. The CA-125 is now at 258 from 159 and the CT scan shows evidence of disease around the bowels, intestines and stomach area which is where it was in April. Since the April CT scan when my CA-125 was 1934, everything looks better of course, but it probably looked even better when my CA-125 was at 53 a few weeks ago.

The cancer is coming back, I am officially resistant to the carboplatnum drug which does happen and now plan B needs to be executed. Plan B is not very straight forward however so Team Marissa has been conducting a lot of research and in the next few weeks I will decide the course of treatment I will take. It will most likely be a trial of some sort and most likely not at the U of Chicago. For example, there is a trial at U of Wisconsin and I have an appointment on Tuesday thanks to Jill who has been throwing her weight around to get me in earlier (love ya Jill!).

My emotional state is pretty fragile right now. I feel like every time this happens I lose a part of myself to this disease. I am not alone in this battle as many other women with this disease are in the same boat as I am. Desperately running around trying to find the right mix of treatment that will keep the cancer in control.

I will keep you posted on what happens. Many thanks as always for your love and support.

Love,
Marissa

Latest News

Greetings everyone. I did complete my sixth treatment last Thursday and am finally coming out of my chemo fog. I wish I could say how relieved and happy I am feeling because I finished my last chemo, but unfortunately my CA-125 test last week went from 53 to 159 which is not the right direction. Dr. Yamada has been out of town and so the doctor on call said to go through with my last treatment to see what happens. So this is what we did.

What does this mean? Well, it means that I take another CA-125 test September 16th when I go and see Dr. Yamada and then we see what the situation is. The CA-125 is all about the trend vs. an individual number. Could the number be an anomaly? Yes, but not likely. What is likely (being the expert that I am) is that I am becoming resistant to the chemotherapy I am on. This is not unusual but I was hoping it would not happen to me. So far, this treatment has been very successful coming down from a CA-125 of 1934 to 53 in four treatments. We were all surprised with the last test results.

I have many options going forward (different chemo treatments/clinical trials) so I will keep everyone posted on what happens. I am feeling disappointed and scared, but by no means down and out. I have been doing this now since April and I was letting myself get excited about some time in remission and now, I just don’t know. I remember how much pain I was in prior to chemo and really don’t want to be there again and of course, I want to live longer and live with some quality. The past days have been hard but as I start to feel physically better, my mental state improves as well.

That is it for now – I know how much all of you are supporting me through this and I feel bad to have to write less than great news. As my friend Hien told me, it is ok to lose a battle here and there as long as I win the war.

With Love,
Marissa