Friday, September 11, 2009

Long Day - Change in Plans

Today was a very long and eventful day for Kay. We started by leaving early enough to miss some traffic and to be at the Seattle Cancer Alliance for an 8AM appointment. Actually we had 4 consecutive appointments. It is a very efficient, patient focused method. The flip side is that the way it works is Kay and I entered a doctors type exam room at 7:45 AM, and essentially stayed in that room until noon. (potty breaks allowed)

The first appointment was with a team of 2 genetic counsellors. They reviewed Kay's family history of cancer, the results of the BRCA genetic testing, and we talked about how to go about assessing Kay's family members for this genetic defect. I will pass on trying to explain this here, as Kay needs to discuss this with several family members personally.

Next we met with a medical oncologist who specializes in breast cancer treatment. We reviewed Kay's options for trying to avoid or detect early breast cancer. Unfortunately with this gene, Kay has a lifetime risk of breast cancer that is extremely high, maybe as high as 80%. Our plan is to screen aggressively with breast MRI and mammogram annually until we see if there is any recurrence of the ovarian cancer, and if none in a couple of years, consider a prophylactic bilateral mastectomy.

Next we met with a gynecologic oncologist. She reviewed all of Kay's test results, and we had a long discussion of the options from this point on. The good news is that there is no convincing evidence that Kay has any cancer detectable at this time, i.e. remission. The rest of the story though is that there is a better than even chance that the cancer will recur at some point. This leads to a discussion of whether careful watching and waiting, or some additional treatment is the best approach. After looking at several options, given that there is not any proof that any one of the options is best, and reviewing the advice from Dr. Safarri that Kay receive an additional 15 courses of the new drug Avastin, we decided that an alternative may be best. The logic for this change in plans is that:

First - there is no proof at all that the course of Avastin leads to a better chance of cure. All we know is that in some women with ovarian cancer that recurs, Avastin can give fairly long term help at stopping further progression of the cancer. The primary attraction of the Avastin is the hope that it may work combined with the relative lack of side effects. None-the-less life threatening side effects can happen, and it is not risk free.

Second - at the time of surgery Kay had a lot of cancer that could not be surgically removed. This cancer responded really well to the combination of Carboplatinin and Taxol that Kay got, even before we started the Avastin.

Third - the CA-125 level did not get down to the goal very low levels until after Kay's 5th course of chemotherapy, and this leaves concern that there is a high chance of tiny areas of residual cancer, too small to detect, but still present, that could possibly be eliminated by additional courses of the same chemotherapy.

Fourth - Women with the BRCA gene seem to respond especially well to platinum based chemotherapy, as their cancer cells which lack the gene for repairing the type of damage done by this type of drug are especially susceptible to this treatment. It seems that women with this BRCA defect who get a good response to chemotherapy may have a somewhat better chance of long term remission or cure than women with similar stages of ovarian cancer who do not have the BRCA defect.

After trying to digest all of this, we decided to go ahead with 2 additional courses of the traditional chemotherapy plus the Avastin, rather than the 15 courses of Avastin. The only change will be Kay will get a slightly different type of Taxol-like drug to try to avoid the nerve injury, peripheral neuropathy, she has developed. Kay will get her 7th course Monday. We will leave on our trip as planned Wednesday, and will be back 3 weeks later for an 8th course if the 7th goes well. The big concern will be whether the neuropathy gets a lot worse, and of course avoiding chemotherapy related complications like infection, bleeding, etc.

After all of this, we met briefly with a nutritionist, who had really good advice, but we were so overloaded with information by then we asked her to keep it really brief. Kay asked for a "lightening discussion". Basically she told Kay to eat more, and gain some weight, but once at ideal weight to not get fat.

From here we raced back to Puyallup, rested a half hour, then went to the GI office to get Kay's stent removed. This went very nicely, and after a brief scare in recovery where Kay "did not feel good" and had everyone concerned, she responded well to some juice, IV fluids, and lying down for an extra hour or so, and we came home.

Off to a quick dinner at Olive Garden, now home for rest and to give thanks for a full day done.

Pray for no complications of the additional two courses of chemo, for continued endurance and strength, and give thanks for great success so far. We thank you all for your prayers and support.



Dawn Pier said...

Dear Ed & Kay,
Congratulations Kay on being in remission!!

A comment - There is a growing evidence that mammograms increase the risk of breast cancer, particularly in women in their 40s and 50s. There is also the risk of blood vessel rupture and associated metastasis of cancer cells. My doctor advocates using ultra sound to examine the breasts with MRI follow-up if something is detected. Something else to consider among your many options and decisions.

God bless you both. Wishing you strength and continued improved health.

Barb Hoffmann said...

Thinking of you, Kay. I wish there was a "rule of thumb," a heuristic guide as to what to do with your thoughts during a time like this. It must feel like walking a high wires. Love always, Sis