New Doctor at Dana Farber Cancer Institute

Hi folks!

I have just completed another round of doctors visits, with the following results. Some doctors at Dana Farber have developed a desensitization protocol to deal with allergies such as mine. Since taxol and carboplatin are the world standard treatment for ovarian cancer, with seemingly good results (extended survival rates, mainly) it is desirable to integrate the taxol into my regime. To do so, I will have to be admitted to the Brighams ICU for the first round only. I will probably be there for 24 hours but will not know the day until the bed literally becomes available. (Please don;t call and ask when because I won;t know). It will be sometime the week of July 7th. There will be a one-on-one nurse with me bedside and they will start the infusion with a very diluted version of taxol (1/100th of the dose). These will be gradually increased over a long period in 12 increments -the largest of these being the final dose. They will keep me there overnight to see how I am doing. There is a very small chance of anaphalyxis, which they can deal with immediately. It is safer for me and is very controlled. It is a protocol which has been tested on 413 patients and I feel satisfied with the results. Subsequent treatments can be done at the Dana Farber in their desensitization unit, which has a patient nurse ratio of 3:1. It all sounds very hopeful. In total, I will have 6 rounds of chemo,every 3 weeks. Those dates can;t be set up until the next one is, which is the hardest to schedule

This weekend we move into Nonquitt and leave until Thursday, at which point we will move down for the whole summer. I am looking forward to being there although I have been told that I will have no hair and that the sun isn;t good for me....it will be a wierd summer. Lots to look forward to this summer.

In other news, we lost power and phone service for 14 hours after a microburst hit at 5:00 on Tuesday. I was not here (enroute from the hospital, of course), but Amanda took the kids and dog out of the house immediately and called me from her car. It was very scary because it took down alot of trees around us and one in our yard, which wiped out the utility wires to our house. Some fell on cars with people stopped in traffic on Elm St. and one fell on the train tracks. Anyway, bad news on our landscaping. We have a big gaping hole to Elm St. in front of our house. Fortunately (although not so good for insurance reasons) it did not hit anythingelse. The tree was a huge spruce which provided good shelter from the road.

I am feeling surprisingly energetic these days. It is telling that I feel better as a chemotherapy patient than I did full of cancer. What a relief to get the bulk of it out of my body. However, a few pesky cells remain which need to go away....enjoy your summers, full of happiness!!!

Round Two of Chemotherapy

Yesterday, I had my second allergic reaction to a taxol based drug. The doctors at Beth Israel were able to administer the carboplatin which is an important part of the chemotherapy. However, they would feel better giving me another version of the taxol in a more controlled environment. So my care will be transferred within the Harvard Cancer Center to Dana Farber Center. I will be under the care of an allergist and an oncologist. The taxol based drugs have been very effective in stopping the cancer in advanced stages, so they really don't want to give up on the best possible treatment for me, which I appreciate.

I feel good today...a little tired but not bad, all things considered. I went for a nice walk this morning with the dog and had a little nap. What more can a girl ask for? I have been the fortunate recipient of all your lovely cards, letters, and boxes of goodies. Very much appreciated!! Thank you, thank you, thank you!! Now for this broccoli craving I have....

Chemo Delayed for a Day

In spite of being at BI all day for a chest x-ray, blood work and meeting with my doctor, I have to go back tomorrow to try another combination of taxol called Taxatir. I was premedicated, but had an allergic reaction to the taxol or to the agent which it is suspended in. They couldn';t even start the carboplatin because the agents work better together and they prefer to do the taxol first (for some reason). This other combination has a different side effect profile. Since it has the best efficacy, they will try tomorrow starting at 10. So we will update the blog as things develop.

Maura

Nonquitt Awaits ...After Chemotherapy

I went to Nonquitt yesterday to view progress on our house...another house project wrapping-up (fortunately). I actually came home and said to Bill, "We are going to have a great summer!!". So Nonquitt is evidently the tonic that I need for my recovery from chemotherapy. It was a pristine, dry gorgeous day without many people....not exactly like summer, but a little taste of the goodness ahead. The water is still cold, but clear. The house looked great and the gardens need a little work (good..a summer project.)

Anyway, my path to Nonquitt this year is being paved by my sisters and sister-in-law who are going down there to clean up after the renovation. This is getting better and better. Bill had this vision last year, and although I wasn't quite up for it, I am glad that we did it. So happy to have outside showers and cool tile everywhere. It really will be good.

Unfortunately, I have a little detour to Beth Israel on Monday and again on July 7th, after moving down there. (And every 3 weeks thereafter.)It will be nice to have it all set up and be in residence for the summer. The two Bills will be commuting from Boston (maybe not daily) and my sister, Susan will be there the entire time...so glad we have bedrooms for everyone!! I may be up for visitors so check in.

I have to keep reminding myself that although chemotherapy is toxic, it is potentially lifesaving. Hope this all pans out...

Another Week and the Saga Continues

Since last week, my doctor, Chris Awtrey asked me if he could take my case to an ethicist at Beth Israel. Here is the outcome. He suggests that I write a letter to the acting head of OB/GYN, Dwayne Pursley, (former neighbor on High Street, Newburyport). From there, he is hoping that it will be heard by a medical review board at Beth Israel and perhaps used as an instuctional case at Beth Israel. I would not pursue this in any other forum.

I developed Stage IV, grade 3 ovarian cancer while being monitored. This is the most advanced form of cancer which has the worst prognosis. There is evidence in prior ultrasounds of things that should have been investigated and weren't. Of course looking at this retrospectively makes things much more apparent. It will not change the outcome for me, but may help someone else.

History: I was an infertility patient 1993-1996 and was fortunate to have conceived both of my children using IVF. I was also exposed to large doses of follicle stimulating hormones, which raise the risk of cancer of the ovaries and breast. (The medical community has not definitely established this. Call it my own hypothesis: If less exposure to estrogen provides protections from ovarian and breast cancers, than it stands to reason that more exposure would present more risk. It has yet to be definitely proven, but I was aware of the potential risk.)

After having children, my OB left Beth Israel because of her own family vs. doctor lifestyle and did not recommend a replacement. I found a doctor through Boston IVF who has been my gynecologist for the past 10 years. She is not a BI doctor, but has hospital privileges. She and I set up a monitoring system to allay my fears which involved ultrasound monitoring every 6 months and a blood test called CA-125 (which is 60% effective). That is as good as it gets for screening for ovarian cancer. There are other things currently being studied which look promising. Anyway throughout this process, there was a small cyst discovered in 2002 which was 2 cm in diameter, benign appearing. " Cysts come and go...not to worry." But this one kept persisting.

In all my discussions with my doctor, this was presented as a simple, fluid filled cyst which was benign, benign, benign. There is no reason to remove it because when you undergo menopause, oftentimes these cysts go away on their own. This conversation continued until 12/07 when the cyst had grown to 5.5 cm, but still simple and benign appearing. When I asked about consulting an oncologist, it was dismissed. She said that they are only removed if you are experiencing symptoms.

Now, Dr. Awtrey tells me that in my ultrasound studies as early as 2004, he notices an echogenic nodule which connected the cyst to the ovary and provided blood flow. This got his attention because cancer and even precancer develops its own blood supply. However, he is developing this study retrospectively in June 2008.

This was never discussed and unfortunately although it is noted in the reports, I never got copies of the actual report, but relied on my doctors interpretation which failed me. I had an appointment with both my new BI gynecologist and BI GI doctor on May 21st and May 13th respectively. I never made it to these appointments because I was hospitalized on May 10th for a large 12 cm mass which had taken the place of the simple cyst attached to my left ovary. The ovaries were both cancerous, as was the cervix and a block of tumor which had grown into my rectosigmoid colon. In fact, it was the tumor block in the colon which was producing the most symptoms as I was complaining about pain in my left side and the inability to pass stool reliably. The barium from the CAT scan finally proved impassable. I was most focussed on the GI symptoms because I had had so much pain related to eating.

Unfortuntely, by the time I was hospitalized the cancer had metastasized and spread around my abdomen and passed through the lymphatic system to the pleural cavity around my right lung. I was starting to develop symptoms which I thought were asthmatic due to seasonal allergies. That in combination with a crushed bladder is what got me to the hospital. The abdominal surgery went well, since major organs weren't involved. The surgeon feels he removed all of the visible tumor cells. Unfortunately the cancer in the lung is inoperable, so we are relying on chemotherapy to attack those tumor cells.

Let's hope for the best outcome. It may be a case study to watch!