Wednesday, April 29, 2009

the report

This post is a write-up of the meeting we had today with Dr. Meister; to make things easier on myself, I took along my voice recorder and we got about 30 minutes of conversation with him. The exchange was very informative; I had written up a series of questions, which I'll list for you below, with the doc's answers.

1. What is Mom's Karnofsky Performance Score? I ask because of this Wikipedia reference, which alludes to the importance of the KPS as one factor in determining her prognosis.

The KPS is a sort of "eyeballed" measurement of a person's functionality, i.e., their ability to get through the day with X amount of help. The lowest score signifies death; a 100 signifies perfect health and the lack of a need for any caretakers or assistants. Dr. Meister rated Mom fairly high, putting her around a 90. Having watched Mom's coordination issues more closely, and over more time, I would have rated her somewhere around a 70, give or take. Today, however, Mom's coordination does seem greatly improved. Her movements are more controlled and evince less looseness or flailing; she was even able to put on her own makeup this morning, with no assistance. Perhaps a 90 is justified, though I wouldn't quite put Mom behind the wheel of a car yet, nor would I ask her to cook one of her usual multi-course meals.

2. Can my brother Sean bring his dog Maqz over to see Mom even during her chemo- and radiotherapy? She may be immunodepressed during this time, so I'm wondering whether we have to worry about the dog bringing in allergens, pathogens, etc.

The doctor gave the all-clear on having Maqz over, though he joked that-- like me-- he's not a fan of chihuahuas, instead preferring retrievers. I prefer "woof" dogs to "yap" dogs myself, but the point here is that Maqz will serve an important therapeutic function for Mom. The more we can reengage her with her normal life, the better.

3. Are we supposed to be starting Mom on her Temodar (chemotherapy regimen) now? How will the Temodar treatment schedule dovetail with the radiation treatment schedule? What effects can we anticipate as Mom embarks on these treatments?

The doctor said that Mom should NOT start on Temodar now; she needs to wait until we've had the talk with the radiology doc, Dr. Tonnesen. The two treatments must start on the same day. This promises to be brutal on several levels: the physical effect of the treatments on Mom (possible nausea and vomiting, hair loss, myelosuppression), the time spent going to and from the hospital every day (at least for the first few weeks of treatment), etc.

4. What about the pathology report?

Dr. Meister gave us the pathology report, and Mom has been diagnosed with a stage 4 glioma, glioblastoma multiforme. Mom herself hasn't seemed to register the import of this announcement, but I felt it keenly today. It confirms the worst, and it means that, unless Mom is one of the very, very rare cases to break the curve, we have about a year more with her, possibly two if we're lucky. The UCLA study I linked to earlier shows the steep drop-off in patient survival rates after the one-year mark. It's like a cliff, and this is very depressing news.

But we now have an idea what the shape of the battle is, what we're fighting, how long we have to take action, etc. I told Dad that we should shoot for the goal of putting Mom in among that golden 4% of patients who survive longer than five years. This is no time to give up, but at the same time, we have to start thinking about the probable outcome of this fight. Graceful surrender may be the only option in the end, because nature can be very persuasive when she wants to be. But there's no need to surrender yet.

Which leads me to...

5. What about the alternative treatment options my brother David has found out about, such as Avastin and DMC?

Dr. Meister isn't familiar with DMC, which means we need to talk right now to someone who is, and to see whether Mom can be hooked up with a clinical trial. The doctor is, however, positive about Avastin; he gave us the contact information for a professional at NIH (Howard Fine; we were advised to try to reach his research nurse first) with whom we can discuss Avastin treatment in the context of a clinical trial. The advantage here is that Avastin is further along in the FDA approval process than DMC is, and NIH isn't that far away, so we wouldn't have to be flying Mom out to UCLA or to some place in Germany for her treatment. Dr. Meister did say, however, that Avastin is more of a "second-line" treatment, i.e, not something a patient would receive right off the bat. He also noted that he wants to remain in the loop about whatever we decide to do. That goes without saying.

The doctor also noted something very important: if we want Mom to be part of a clinical trial, then we have to work out the arrangement for that immediately, before she starts her regularly scheduled treatment. As I suspected, there is the question of how different treatments might interact with each other, and we obviously would be doing Mom a disservice if we signed her up willy-nilly for everything that's out there. The down-side is that, because we have to pick and choose treatments, we will need to choose wisely. Precisely because Mom can't be signed up for every sort of treatment, there's a chance that we might choose one treatment, only to learn about an even better one later.

Mom's appointment with Dr. Tonnesen, the radiology guy, is on May 11. We have until then to see about signing Mom up for a clinical trial. At this point, we need to know more about the feasibility of going the DMC route before we try the Avastin route. If DMC begins to look implausible, then we'll probably have to move decisively toward Avastin. Time is of the essence: Mom's tumor was debulked by over 90% thanks to surgery (one article says that surgery usually reduces such tumors from an average of 10^11 cells to 10^9 cells, which is a 99% reduction), but delays in treatment due to our indecisiveness can lead to quick recurrence. The next few days will therefore see us doing some furious research-- something my brother David's been good at-- and making a lot of calls, which seems to be Dad's chosen role.

UPDATE: Dr. Meister's remark re: DMC: "I would not add that to standard therapy because it has not gone through the approval process. I think it would still be considered experimental."

6. What's the difference between a tumor and a cancer?

I asked Dr. Meister about this, and his answer was that the two terms are basically synonymous when talking about a mass with malignant tendencies. (Later on, I may review the audio and quote him more accurately.) There are, however, tumors that are not labeled as cancerous because they are benign.

7. Whom can we speak with about the psychological dimension of all this-- Mom's apparent denial that any problem still exists, etc.?

Dr. Meister gave us contact information for some sort of "Life with Cancer" group, which we'll be looking into. I'm torn between two equally powerful feelings right now: extreme worry that Mom hasn't grasped the gravity of her situation, and a sort of poignant relief that Mom may be oblivious to what is going on. I feel she needs to know what lies ahead, including the probable eventual outcome of all this, but I'm worried about whether this will mean piercing some bubble of denial she may have built around herself, and thereby plunging her into despair as she contemplates her own fate. Denying her the information she needs is unethical, but putting her into a deep depression isn't all that palatable an option, either. I can only hope that my mom is still as mentally tough as she's always been. In the end, we're going to have to talk with her as gently, openly, and understandably as possible.



augusta said...

Kevin, when my Dad got diagnosed with ALS about 16 years ago, the doctor was pretty upfront and bald about what it was and what the prognosis was. My Mom and me and my siblings were really mad at him, because it was soooo raw. But Dad was not. He was grateful that he knew what a probable timeline was, so they he could get stuff "in order".And every day became oh so precious. I understand your pain with dealing with the 2 opposing sides...keep emotionally safe in denial or tempt despair with the bold truth...alll I can say is this, this is where the whole discussion of faith becomes not just a rhetorical intellectual discussion, but a hard reality to embrace-or not...May God be with you all.

Maven said...

I'm torn between two equally powerful feelings right now: extreme worry that Mom hasn't grasped the gravity of her situation, and a sort of poignant relief that Mom may be oblivious to what is going on.My bet is she's still in shock over it, or perhaps even denial as a coping mechanism. All of this is such a shock, to her, and the entire family. It's hard to grasp and absorb the enormity of it, I am sure. There's no time for despair. At this point, life is lived incrementally, moment by moment. Despair serves no purpose now.

She's truly blessed that all the men in her life are PRESENT, in the moment, concerned, and doing their utmost to be of help to her.

You know I empathize. I am still raw and in shock over the events of the last eight months.

Much love to you, your brothers, and your father.

Maven said...

PS: Though it might be a bit premature at this point to suggest, so please forgive if I offend, please do not overlook hospice. If need be, I can employ my Google-Fu to send you information on available hospice care in your area.

Kevin said...

Thanks, all.