FINISHED with Chemo!

Last night I took my final dose of ATRA, almost two-and-a-half years after my AML diagnosis.

It's hard to believe the end of treatment has finally come. We haven't received my quarterly PCR remission test result yet, but once that does come in, knock on wood, we'll be able to celebrate the end. Until I hit the five-year mark, I'll still be seeing my oncologist quarterly, and having my blood tested at each of those appointments, but NO MORE PAIN, NAUSEA, AND INSOMNIA!!!

Today, my family starts a new phase in our lives. For as far back as my daughter's memories go, she's been aware of me taking medicine and feeling sick, and having lots of doctor appointments because of the "Tiny Bad Guys." As long as I stay in remission, these memories of hers will slip away.

Remission Test Results

According to my PCR test, conducted on blood drawn two weeks ago, I'm still in remission! Two years in remission now.

At my last appointment, my doctor said this hasn't been a good year for him with APL (in terms of relapses/deaths). This made me very sad to hear. And serves as a reminder that I cannot take for granted a favorable test result.

Only five days left in this ATRA round. Then I plan to celebrate this test result as any sensible woman should, by shoe shopping! (and of course eating chocolate cake)

PCR Remission Test Result

The PCR test came back clean: I'm still in remission!

Right now, I feel so sick that I can't think about celebrating with chocolate cake, or even adding a picture of it to this post. I've been throwing up throughout this morning, which means the ATRA dose I took this morning is likely not still in me.

Dr. Goldberg Appointment

Time flies when you're a cancer patient.

No, that's not right.

Time flies when you're having fun.

Much better.

I cannot believe it's already almost been three months since my last round of the ATRA chemo. This morning, Ryan and I went to the cancer center for my quarterly consult and blood tests. We will receive the PCR remission test result back by the end of next week. This time, Dr. Goldberg also ordered a cholesterol level test. ATRA has a propensity to significantly raise cholesterol, so if the result comes back high, he'll put me on a statin.

Hopefully I won't need the drug, since it's only been less than three months since I went off Coumadin, the blood thinner. I've been enjoying feeling a little more "free." For instance, I rode my bike for the first time last weekend. (People on blood thinners are advised to avoid activities that can result in physical trauma for the obvious reason of greater bleeding.)

It's a good thing I waited, for I discovered that riding a bike is NOT just like riding a bike, in terms of being able to pick it up again. While in the driveway, I clipped one shoot onto the pedal of my racing bike and realized I wasn't wearing a helmet. Instead of unclipping that foot, I raised my other foot. Ooops. The result: driveway rash in three spots on my left leg, three massive bruises on my theft thigh, and a gash on my right ankle that I didn't discover until after my ride because the chain grease had staunched the bleeding.

Nothing like being back in the saddle of life. Given how prone to anxiety I've been since my diagnosis. I'm proud of myself for actually going on a bike ride after my rough start. It might have something to do with the First Descents trip I recently attended. The adventure helped me remember how good it feels to let go of fear enough to challenge myself. I've been thinking about what my "FD Challenge" will be. More to come on that.

Cancerversaries

Cancerversary is a playful word with a deep meaning, and it represents a reason to celebrate. Now that I am more attuned to the survivor community, I see the word frequently. But what exactly does it mean? Is it the anniversary of when a person is diagnosed with cancer, as the name suggests? Or is it the anniversary of being declared in remission? (If the latter, then shouldn't it be called a Remissionversary?)

Goldberg Appointment

Now that the pre-chemo apointment every three months is becoming routine, we refer to  it as the Goldberg Appointment. At last Friday's meeting with Dr. Goldberg, he told me to stop taking the Coumadin (i.e., Warfarin). It's standard practice to take a blood thinner for a year post blood clots, and it's now been a year. No more rat poison in my system, and no more blood draws every few weeks to measure my INR/PT. I did have my blood drawn for a PCR remission test for the APL. We should get the result by this Friday.

We also discussed the plan for pain management for this round of ATRA. We're trying a new tactic- a patch that will release a continual stream of medication into my blood stream.* Hopefully by bypassing the GI tract, it won't compound the nausea caused by the ATRA. The downside is it will make me constantly drowsy, which might actually put me in the right state of mind to finally watch the Twilight series... Given the quantity of blood products I've "consumed" over the past year, I guess I'm on Team Edward.

* Thank you, Nurse Mary Lou, for suggesting this!

PCR Remission Test Result

The test came back negative (i.e., no blood cells with the chromosome transolcation that signifies APL). We are so, so relieved. Dr. Sharma said that we still need to figure out what's causing the pain. I told her I don't care, as long as it's not cancer, I don't care. 

A Thousand Better Ways to Spend a Friday Night

Yesterday evening my left side started hurting. Pain in the same area of my ribs that preceded my diagnosis last spring. When the ache hadn't dissipated by midnight, I called Dr. Sharma, who told me to get it checked out at the E.R. for peace of mind.

The CAT SCAN and blood counts came back normal, and there were no irregular cells when Dr. Sharma looked at a blood sample under the microscope this morning. However, she thinks it's worrisome that I'm having this same rib pain, so she'd like me to come into her office Monday to have blood drawn for a PCR test. The PCR test, which assesses the blood on a molecular level, is much more precise than a CBC (count of blood cells) or examining a slide under the microscope.

Remission Test Results

Chocolate cake recipe from Jennifer M.



Chocolate cake Sheila made in a cupcake bundt pan
 while staying with us in October



Chocolate cake-themed card from "meiner Deutschen Familien"

...yes... we did eat chocolate cake tonight.

Best Halloween Costume Ever

This afternoon I had blood drawn for a PCR remission test (described at the end of Go FISH). I'll receive the result next Monday.

Ryan and I are more nervous than we should be. The oncologist says the test should show that I'm cancer free. We believe him, mostly. But there's a part of us that can't stop worrying. A year ago, we thought nothing could go wrong. And then something did go wrong.

Blood Test Results

First and most importantly, my PCR remission test showed that I am still in remission. Fantastic!

One of the other blood tests came back showing a slight snag in my recovery. My immunoglobulin (IgG) count is low (i.e., I have an antibody defiency). This explains why my cough/cold has persisted for six weeks.

The treatment to correct the deficiency is called intravenous immunoglobulin therapy (IVIG). Over a period of six hours, I will receive an infusion of antibodies donated from between 3,000 and 10,000 healthy donors. At this time, I don't know much more than that. The registered nurse at the cancer center, who informed me of the irregular test result, said they would prefer to discuss the treatment and possible side effects with me in person.

Chemo Ahead

The other day, I noticed a man wearing a fundraiser T-shirt with an imprint of a traffic warning sign that read "Cure Ahead" instead of "Curve Ahead." Very clever. As I'm finishing my tenth and final week of Arsenic Trioxide, I've been thinking about what lies ahead on my path to complete remission. My curve this fall is the chemo that will lead me to being cured.

My schedule:

PCR Remission Test Results

I received my PCR test result today... There were no blood cells that showed the chromosome mutation that is the hallmark feature of APL. That means I am still in remission!!! The PCR test is more precise than the FISH test I had after my hospital stint, so the favorable result is a huge relief.

It feels counterintuitive that I have to continue a drug treatment program if I'm in remission. According to the doctors, the goal of the treatment is to prevent a relapse. My plan is based on the survivorship results of a series of clinical trials. Even though I'm considered in remission, there could be a few cancerous cell lurking in my bone marrow. It only takes one bad cell to spoil the bunch. The drugs are designed to kill any lingering rotten cells.

I will continue to have PCR tests periodically. Each one will get me closer to the five year mark, at which time I will be considered to be in complete remission. But that's a long way away. I need to celebrate this victory with another piece of chocolate cake. One step at a time. Actually, the counter with the cake on it is ten feet away, so the next five steps will be taken very quickly...

Thank you again to everyone who's been so supportive of our family this year. If it weren't so logistically challenging, I would send each of you a piece of the cake.

Good News

Just left my meeting with Dr. Goldberg.

The abdominal area CT scan shows no new problems. Also, it shows that the thrombosis (clotting) in my liver is less pronounced than it was in the last scan. The doctors had told me the blod clots that formed while I was in the hospital could be permanent, or my body might repair these veins. The new scan shows that my liver is repairing itself. Hopefully, this trend will continue, and a year from now, my liver will be as good as new, or rather, as good as old.

I've been abstaining from alcohol because of the clots in my liver. I figure I can't afford to damage it any more. My last drink was last November (before I was pregnant). But if my liver repairs itself...

Go FISH





Tomorrow I receive the results of my FISH test. It is the first test to see if I am in remission. So when I say, "Go fish," I don't actually mean "Grab a pole and some bait," although that's exactly what I intend to do the first chance I get. What I mean is: "Go FISH Go! Be negative for the cancerous cells."

At this stage, a few cancerous cells in my blood is okay. The purpose of Phase Two of treatment is to wipe out any bone marrow cells still producing cancerous descendants that the first round of chemo missed. A lot of cancerous cells, which would be evident in the FISH test, would be a bad thing. Last Friday, the oncologist explained the next steps if I am not in remission. Hearing it once was enough. There's no point in thinking about it today because it's not going to happen.

I am approaching the test result as simply getting proof that I am in remission, instead of viewing it as a diagnostic tool with two possible outcomes.

That said, am I nervous? Yes. Why else last night would I have eaten seven of Jackie's oatmeal chocolate chip cookies, each the size of my palm. (They are delicious, but normally I would have stopped at four.)

I am comforted by the oncologist's prediction last Friday. He said that my blood test numbers at the time of diagnosis placed me in the Low Risk category of the three risk categories for AML APL (M3) Leukemia, and APL has the highest cure rate (9 out of 10) for those who survive the first month out of all the types of leukemia. He has had a very high success rate with his patients. Given my risk category, blood counts now, and that I survived the hardest period- that first month- he's confident this first test should show I'm in remission. I'm putting my money on the professional's opinion.

Once I get my favorable test result, I'll be on track for Phase Two of the treatment to begin June 6th. Going forward, I will periodically be tested to see if I'm still in remission with a PCR test. This is a more accurate test, for which the result needs to show ZERO cancerous cells (a single cancerous cell could multiply into a problem). Each of these tests will be one step closer to reaching "Cured" status.

If any of the tests, including this first one, come back with a positive result, I will have to have another bone marrow biopsy to confirm the presence of the bad bone marrow cells. This was my least favorite experience during my hospital stay. On the bright side, I made the four doctors/residents in the room laugh during it. I don't want to make the squeamish squirm, so won't give detail, but the procedure hurt, and the sound of the instrument made it worse. I was holding Ryan's hand and trying to maintain a controlled breathing pattern. To do so, I asked Ryan to begin counting for me. He began with one, and instead of  starting back at one when he reached ten or twenty, he kept going. As the doctor worked, I heard him mention needing a third sample. Meanwhile, Ryan had reached 63. I snapped, "Ryan, we do not need to know how LONG this is taking. Count to ten and repeat." The doctors laughed at this. Normally, I would feel proud of myself for making the room laugh. Instead, I worried the distraction would add a few seconds to the length of the procedure.

As silly as this sounds, I want the FISH test and the periodic PCR tests to show I am in remission as much so I can avoid another bone marrow biopsy as for the remission status itself. It is easier to allow myself to fear something small than to fear something big.

In Conclusion, Go FISH Go!
Praying for a good result tomorrow.


*** Below is a side note, and an opportunity for me to throw around some big words. Also a good time for anyone not interested in science to surf on over to http://www.espn.com/ or http://www.perezhilton.com/.

 - How APL develops: Chromosomes 15 and 17 swap material in a developing marrow cell.

The abnormal marrow cell produces a leukemic cell, which multiplies into 11 billion more cells.  These cells, called "leukemic blasts," do not function normally. They grow and survive better than normal cells and block the production of normal cells. Thus, given that one cancerous cell can multiple into 11 billion more, all of my PCR tests in the future need to show zero leukemic cells in order for me to be considered in complete molecular remission.

Since the leukemic blood cells originated from the abnormal marrow cell, they also have the swapped 15 and 17 chromosome material. Thus the two test described below can detect the abnormality from a blood sample.

- FISH stands for "fluorescent in situ hybridization." In the test, DNA probes tagged with flourescent molecules that emit light of different wavelengths (and different colors) are bound to the targeted chromosomes within the blood cells. The chromosomes thus flouresce in color. By using different colors, the scientist can tell if the two chromosomes (15 &17) have traded genetic material. Basically, if the scientist use a green marker for chromosome 15 green and and a red marker for chromosome 17, there should be no red on chromosome 15 and no green on chromosome 17. Swapped material in the blood cells indicates the presence of marrow cells with the swapped material that are continuing to produce those cancerous blood cells identified in the test. There is a 3-4% chance for a false positive with this test.



The picture above shows how the the pairs of chromosomes 15 and 17, within their cells, would look under the microscope once they've been tagged. If green and red are next to each other (meaning there was a swap/translocation), then the probe creates a yellow flourescent overlap. The genetist looks for the presence of yellow, which in the picture appears in the two bracketed cells. Yellow is now my least favorite color.

 

- PCR stands for "polymerase chain reacton." The technique makes multiple copies of trace amounts of DNA or RNA so that the specific DNA or RNA within the chromosomes can be studied. This makes it possible for the scientists to use engineered probes to find the targeted marker that exists on any abornmal blood cells (which would indicate there are still marrow cells with genetic material on chromosomes 15 and 17 swapped, producing cancerous blood cells). The test can detect the presence of one blood cancer cell among 500,000 to 1 million blood cells. (It is more accurate than FISH, but given I likely still have some cancerous cells pre Phase Two treatment, it would be pointless to do this test now.)

Sources:
- My mother, who is an Advanced Placement Biology teacher
- "Acute Myeloid Leukemia," published by The Leukemia and Lymphoma Society. The explanations of the medical terms have been very helpful, and there are some direct references to my subtype, APL (M3).
http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/leukemia/pdf/aml