Wendy and I went to the Fertility Physicians of Northern California (FPNC) clinic on Monday. We wanted them to help formulate a plan that we could follow once I could donate "genetic material". We met with the very thorough, very patient, Dr. Nelson who spoke to us at length about our options.
If I haven't written about it already, the current plan (formulated by the Standford Cancer Center) was to wait until I get into Cytogenetic Remission and stop Gleevec for one month. We would wait for the first two weeks, then donate several "samples" over the remaining two weeks. The idea here is that the Gleevec would be flushed fom my system after two weeks so the donations should be free of the drug. These donations could then be used for artificial insemimation or, worst case, IVF. The average length of time it takes a CML patient to achieve Cytogenetic Remission is 12-18 months. They agreed to test me after 6 months this coming December.
Within the first 15 minutes of our discussion with Dr. Nelson, this plan essentially got flushed down the toilet. According to him, it take 2.5-3 months for a male to generate new sperm. This means that waiting two weeks would, in his opinion, be meaningless. As far as I am aware, being off Gleevec for 3 months is not an option. It's too large of a gamble that you will be resistant when you restart.
This means that we basically have two options now. The first is to roll the dice and conceive while I'm still on the Gleevec. The second is explore options such as donor sperm and adoption.
I can't help but be extremely angry and frustrated that we were told nothing of this before I started Gleevec. I was diagnosed in the chronic phase and waiting 3 or 4 days before starting Gleevec to allow time to bank sperm would have made no difference in the course of my treatment.
We haven't yet decided which direction we're going to go yet. If we decide to conceive while on the Gleevec and the baby has a birth defect, wouldn't that essentially be my fault? If we obeyed the doctor's advice not to get pregnant we wouldn't have condemned a child to life with a disability. On the other hand, we can find no credible study or evidence that conceiving while a male is taking Gleevec has a statistically significant chance of causing birth defects in the child.
It's not a decision I relish, and one that we shouldn't have to make. I'm thinking about making fertility awareness in new oncology patients my "cause". I think it makes sense to educate a newly diagnosed patient about their fertility options with regards to the consequences of their treatment. In some cases, there won't be an option. Sometimes the physician has to act quickly and decisively in order to save the patient's life. There is no time to stop and consider the future of a couple's fertility. This wasn't the case with me.
Wendy and I have a lot to talk about.
Wednesday, August 20, 2008
Sunday, August 17, 2008
Lucky?
It's hard to feel lucky when you have cancer, but tonight, I do.
I consider myself "saved" in some ways by my GP. If he hadn't ordered a blood test when he did, who knows how long it would have been before the leukemia had been caught? Instead of catching it in what appears to be the early chronic phase it could have progressed to the accelerated phase... or worse.
A good friend of mine lost his father-in-law to CML just last year. His leukemia was caught because he became so ill, and his spleen so enlarged, that he was airlifted to a major hospital. He succumbed to the disease a few short years later.
I've been occupying myself by reading blogs written by other people with CML. It's strange how eerily similar the stories can be in some cases and how divergent they can be in others.
This poor lady is going through the agony of watching her adult son battle CML. Luckily, her son is responding well to Gleevec. Reading through her blog I couldn't help but think of my own mother. I wouldn't wish her pain on anyone.
This young man from England isn't fairing so well. He was diagnosed with AML early in 2007. AML is the acute form of my cancer. Prognosis isn't good for those unfortunate souls that have it. Worse still, one month later he was diagnosed with CML in addition to his AML. To his knowledge, he's the only one in the world with both types. His name is Adrian and he is currently waiting to die. About 1 month ago he was given a few weeks to live. Reading what he has gone through makes me appreciate the relative innocuousness of my cancer.
It makes me a little angry to read or hear that I have the "good" cancer. To me it sounds ignorant and obtuse. There is no such thing as a "good" cancer. And yet, I wouldn't think twice about describing Adrian's situation as "worse". I guess if his can be "worse", then mine can be "good". Everything is relative, and I think I understand now what people mean when they say CML is the "good" cancer. I get to be at home with my wife, take a pill every night and go about my life as best as my fatigued, lightheaded, couch-riding ass can.
I'm worried that my athletic days are over and I'm deathly afraid that I won't get to have children and grow old with my wife. But I have that chance, and it's a good chance.
Fuck that, a very good chance.
I consider myself "saved" in some ways by my GP. If he hadn't ordered a blood test when he did, who knows how long it would have been before the leukemia had been caught? Instead of catching it in what appears to be the early chronic phase it could have progressed to the accelerated phase... or worse.
A good friend of mine lost his father-in-law to CML just last year. His leukemia was caught because he became so ill, and his spleen so enlarged, that he was airlifted to a major hospital. He succumbed to the disease a few short years later.
I've been occupying myself by reading blogs written by other people with CML. It's strange how eerily similar the stories can be in some cases and how divergent they can be in others.
This poor lady is going through the agony of watching her adult son battle CML. Luckily, her son is responding well to Gleevec. Reading through her blog I couldn't help but think of my own mother. I wouldn't wish her pain on anyone.
This young man from England isn't fairing so well. He was diagnosed with AML early in 2007. AML is the acute form of my cancer. Prognosis isn't good for those unfortunate souls that have it. Worse still, one month later he was diagnosed with CML in addition to his AML. To his knowledge, he's the only one in the world with both types. His name is Adrian and he is currently waiting to die. About 1 month ago he was given a few weeks to live. Reading what he has gone through makes me appreciate the relative innocuousness of my cancer.
It makes me a little angry to read or hear that I have the "good" cancer. To me it sounds ignorant and obtuse. There is no such thing as a "good" cancer. And yet, I wouldn't think twice about describing Adrian's situation as "worse". I guess if his can be "worse", then mine can be "good". Everything is relative, and I think I understand now what people mean when they say CML is the "good" cancer. I get to be at home with my wife, take a pill every night and go about my life as best as my fatigued, lightheaded, couch-riding ass can.
I'm worried that my athletic days are over and I'm deathly afraid that I won't get to have children and grow old with my wife. But I have that chance, and it's a good chance.
Fuck that, a very good chance.
Ugh
I've been on the couch for three days now. I was supposed to work Friday but was too tired and had vertigo pretty bad. Saturday was worse. I had the spins and couldn't stand upright for more than a few minutes. Today was worse still. I was lightheaded, had vertigo and felt very weak.
Yesterday I tried Dramamine a couple times. The vertigo and "light head" feel a lot like car sickness. I think it helped some. The downside is Dramamine still makes the fatigue a lot worse.
I'm pretty sure that I was dehydrated today. Thinking back to yesterday I used the restroom about 10-15 times, 3 times just last night. Today was about the same. It's only 7pm and I think I've peed about 8 times. I drank three glasses of water and feel quite a bit better now.
I'm hoping that the vertigo and "light head" go away over the next couple of months. I'm hesitant to drive unless I'm having a really good day, and so far those don't happen very often. Wendy goes back to work tomorrow which means my beautiful chauffeur won't be available any more. I'm a little bummed about that. At least all the time I've been spending on the couch since this started hasn't been alone. If I see one more "Law & Order" rerun, I may scream....
Yesterday I tried Dramamine a couple times. The vertigo and "light head" feel a lot like car sickness. I think it helped some. The downside is Dramamine still makes the fatigue a lot worse.
I'm pretty sure that I was dehydrated today. Thinking back to yesterday I used the restroom about 10-15 times, 3 times just last night. Today was about the same. It's only 7pm and I think I've peed about 8 times. I drank three glasses of water and feel quite a bit better now.
I'm hoping that the vertigo and "light head" go away over the next couple of months. I'm hesitant to drive unless I'm having a really good day, and so far those don't happen very often. Wendy goes back to work tomorrow which means my beautiful chauffeur won't be available any more. I'm a little bummed about that. At least all the time I've been spending on the couch since this started hasn't been alone. If I see one more "Law & Order" rerun, I may scream....
Tuesday, August 12, 2008
Changing Horses and a Good Score
We went to Stanford this morning for my first blood test after resuming the Gleevec 2 weeks ago. I am happy to report that it was my first "normal" blood count since this whole pile of shenanigans began. My white cell count is now 4,400, my hemoglobin is 14.5 and my neutrophils are at 63.7% This is excellent news. It means that my response to treatment is headed in the right direction.
My next checkup is in 6 weeks when they'll do a standard CBC blood test just to make sure things are still on track. After that, they'll do a more in depth test in December to determine whether I've achieved a cytogenetic response (no leukemic cells in the blood). If I understand correctly, this will be a FISH test, hopefully without another bone marrow biopsy. From everything I've read, the average length of time to achieve a cytogentic response is 12-18 months. December will only be 6 months from diagnosis, but we're still hopeful.
We've also decided to stick with Stanford as my primary oncology care provider. Dr. Coutre appears to be a specialist in CML and Gleevec and we kept getting bounced back to him anyway with questions that my original oncologist couldn't answer. The minor downside is the size of the Stanford clinic compared to Dr. Cohen's private practice. It was nice to be on a first name basis with the office personal and have blood test results in 10 minutes. At Stanford the blood results usually take about an hour to come back and you see a different hematology fellow each time you're in the clinic. In all, I think it's a good trade, at least until things stabilize and my treatment goes into "maintanence mode".
In miscellaneous news I got a prescription for Compazine today for the nausea I'm experiencing as a side effect of Gleevec. Ativan didn't work, Dramamine put me to sleep and Jolly Ranchers only get you so far. Wendy and I joked today that most of the medication I'm currently taking is to counteract the side effects of other medication. I take Gleevec which makes me nauseous and gives me bone pain. So I take Advil to help the bone pain but that makes the nausea worse. Than I need to take an antiemetic to help with the nausea. Who knows, maybe I'll get another prescription for some side effect of the Compazine (assuming it works). I read that it can cause seizures, maybe I'll get an anticonvulsant for that....
My next checkup is in 6 weeks when they'll do a standard CBC blood test just to make sure things are still on track. After that, they'll do a more in depth test in December to determine whether I've achieved a cytogenetic response (no leukemic cells in the blood). If I understand correctly, this will be a FISH test, hopefully without another bone marrow biopsy. From everything I've read, the average length of time to achieve a cytogentic response is 12-18 months. December will only be 6 months from diagnosis, but we're still hopeful.
We've also decided to stick with Stanford as my primary oncology care provider. Dr. Coutre appears to be a specialist in CML and Gleevec and we kept getting bounced back to him anyway with questions that my original oncologist couldn't answer. The minor downside is the size of the Stanford clinic compared to Dr. Cohen's private practice. It was nice to be on a first name basis with the office personal and have blood test results in 10 minutes. At Stanford the blood results usually take about an hour to come back and you see a different hematology fellow each time you're in the clinic. In all, I think it's a good trade, at least until things stabilize and my treatment goes into "maintanence mode".
In miscellaneous news I got a prescription for Compazine today for the nausea I'm experiencing as a side effect of Gleevec. Ativan didn't work, Dramamine put me to sleep and Jolly Ranchers only get you so far. Wendy and I joked today that most of the medication I'm currently taking is to counteract the side effects of other medication. I take Gleevec which makes me nauseous and gives me bone pain. So I take Advil to help the bone pain but that makes the nausea worse. Than I need to take an antiemetic to help with the nausea. Who knows, maybe I'll get another prescription for some side effect of the Compazine (assuming it works). I read that it can cause seizures, maybe I'll get an anticonvulsant for that....
Monday, August 11, 2008
A Good Day
Today is the first day I've felt "normal" in over a week. No bone pain, no nausea, no vertigo, and I actually felt energetic (I didn't get out of bed till 11am, but we'll let that slide for now). It was fantastic!
I went to work today and actually did some work. This evening Wendy, Leu and I walked downtown and enjoyed the wonderful weather and tasty salmon tacos on the patio at Rosy's on the Beach.
Tomorrow morning it's off to Stanford. I need a checkup to see how my blood is doing now that I'm back on the Gleevec.
In addition to my own personally fabulous day, I found a news article about research being done in Australia that has made some advances in targeted therapies for blood cancers. I love science... :-)
I went to work today and actually did some work. This evening Wendy, Leu and I walked downtown and enjoyed the wonderful weather and tasty salmon tacos on the patio at Rosy's on the Beach.
Tomorrow morning it's off to Stanford. I need a checkup to see how my blood is doing now that I'm back on the Gleevec.
In addition to my own personally fabulous day, I found a news article about research being done in Australia that has made some advances in targeted therapies for blood cancers. I love science... :-)
Subscribe to:
Posts (Atom)
Posts
