Well, without jinxing myself, the dose reduction has made a huge difference in symptoms. No jaw pain (yet), no "little c" (yet)... Just really, REALLY tired. I'm working from home today and have a few things that need to get done, but they're going to have to come in spurts - I see my lunch involving a nap this afternoon.
Oh, and didn't get any nausea this time around either. The neurotic in me wonders if they gave me 10% of my previous dosing, not a 10% reduction, ha ha.
Here's hoping everyone has a happy, HEALTHY new year!
Monday, December 31, 2007
Saturday, December 29, 2007
This Disease Sucks
I just found out today on the support forum I visit that one of the bravest women on there is not doing well, and may likely leave her loving husband and four kids very soon. Nothing worked for them, none of the treatments available.
"Good cancer" my ass.
"Good cancer" my ass.
Thursday, December 27, 2007
Treatment 5 - A Long Post
Hi all, this is going to be a long one, so grab a coffee and a comfy chair. I want to go over some things that happened today at the Cancer Center, as well as give everyone a quick tour of the treatment and my bald head (for everyone who hasn't seen me since we started).
For those of you who haven't seen the new "I Wanna Look Like Kojak" makeover show, here's a shot of Steve and I, sans hair:
OK, lets start with the first bit of news. I felt good going in, but the fact is I've been having shortness of breath issues. There's two things they really watch with this regimen: the lungs and the heart. One of the drugs can cause permanent lung damage (pulmonary fibrosis), and if there's any significant sign of it, they pull the drug. While Bleomicin is not the most critical drug in the cocktail (in fact, there are ongoing studies that seem to show its not really needed), I want to stay with "what works" and not get it pulled if I can help it. Second, I've had some occasional puffiness in my hands - The oncologist thinks its related more to the neuropathy (numbness in the hands and feet) than my heart -- Thank God.
So, where is this leading? OK - Dr. Szarka (aka SuperDoc) has recommended (and
I agree with) a reduction in the dosing of the medication. The best description of why came from my superbrain niece who is heading into medical school (Dr. Szarka gave her props for the analogy): Suppose you have a headache. You can take two Tylenol and the headache goes away or is tolerable. You can take 20 Tylenol and only see marginal (if any) improvement, but you just killed your liver. Same applies here. There are three methods they use to determine dosing, and about a third of doctors use each type:
We will play it by ear. I'm still going to get my symptoms, but the hope is given the very high cure rate, my chemosensitivity, and the fact that we've kicked the crap out of this so far... She doesn't want me curing this only to find me requiring oxygen 24/7 and unable to button my shirt, or as Suzanne's concerned not being able to zip my pants when she's not around (no, she does not zip my pants at present - perverts). I'm on board with this call.
On the brighter side of things: We went over the vaccine trial with Dr. Szarka, and the researcher in her came out right away in a loud "Ooooh...". She then got her game-face back on and said there's always risks too with trials and vaccines, but she will research it for us. Given its based on a very successful existing vaccine, it may be something she agrees with too.
We also covered the next steps following our February PET scan (which shows if cancer cells are still active anywhere in my body. Her opinion: She has every expectation that we will be in CR (Complete Response - no sign of active disease). If there is anything, it will be small and either a) inflammation and not active disease or b) small amounts of slow-growing Hodgkins in the nodes that are going to get nuked (radiation) at the end.
While she doesn't at all think we will see unchanged or enlarged uptake in my chest, she's open to possibly finishing me off with the BEACOPP cocktail for 3 cycles. BEACOPP is used for stage 3 or 4B'ers, where extremely aggressive treatment is required. The good: BEACOPP gives everyone a 97% cure rate. The bad: BEACOPP has about a 20-30% chance of causing leukemia about 10 years down the road. Again, she is fully expecting a CR (and I should note that while she is very positive, she doesn't throw stuff like that out willy-nilly; She's been right 100% of the time she's said something like that). So, I consider that badass good news.
OK, on to the tour of the Paoli Cancer Center treatment process!
First, you have to get a Barco Lounger seat. They have a bunch of 'em: Some are private rooms, others are semi-private with TV screens, or you get plugged into a public lounge area. I get in early to snag a private room so Suzanne and I have Movie Afternoon (Today was Pirate's of the Carribbean - At World's End; Not bad). So, I plop down into a Lounger, and Suzanne gets a fairly comfy chair too.
Second step, they plug me in and pull bloodwork before I get a visit with the doctor, where we go over things. Dr. Szarka, in my opinion, is one of the best doctors I've worked with. Why? She puts up with my neurotic-ness, knows poor Suzanne deals with it the other 13
days of a treatment, and (most importantly) takes the time to get ALL of our questions answered. What's really neat is we came in with a list of 11 questions. She asked 8 of them herself. She knows her business.
Once we have the treatment gameplan, I go back to the Barco and in about 30 minutes, out come the custom-mixed pharmaceuticals. My drug combination is known as ABVD. This is the "tried and true cocktail that kicks Hodgkin's ass.
They give me the Adriamycin shot first (aka "Big Red", due to its Kool-Aid color), then the Bleo and Vincristine (I always forget the order), followed by the brown-bad drip of Dicarbazine. All in all, treatments go from 4-6 hours.
We're still in very good spirits (Hey Santa! I still want that clean PET scan for Christmas!!!), even with the reduction. I'd be lying if I said I wasn't scared about it emotionally, but I've had too many people with medical backgrounds (including my doctor) tell me this makes sense and will not make a relapse more likely. In fact,
Doctor Szarka point-blank said if I relapse, it will not be because of a 10% reduction in two drugs. There's no risk from her perspective.
Right now, I'm tired and feeling weak, but on-board with the changes. No queasyness like I've had the last two treatments, so I'll take it since Fridays are work from home days (woohoo!). However, if my counts keep dropping with Neulasta, I may have to spend the last few months working 100% from home (to avoid infection risk) or on disability. Here's hoping we don't have to, but again: The goal is to kill this thing, so we do what we have to do.
For those of you who haven't seen the new "I Wanna Look Like Kojak" makeover show, here's a shot of Steve and I, sans hair:
OK, lets start with the first bit of news. I felt good going in, but the fact is I've been having shortness of breath issues. There's two things they really watch with this regimen: the lungs and the heart. One of the drugs can cause permanent lung damage (pulmonary fibrosis), and if there's any significant sign of it, they pull the drug. While Bleomicin is not the most critical drug in the cocktail (in fact, there are ongoing studies that seem to show its not really needed), I want to stay with "what works" and not get it pulled if I can help it. Second, I've had some occasional puffiness in my hands - The oncologist thinks its related more to the neuropathy (numbness in the hands and feet) than my heart -- Thank God.
So, where is this leading? OK - Dr. Szarka (aka SuperDoc) has recommended (and
I agree with) a reduction in the dosing of the medication. The best description of why came from my superbrain niece who is heading into medical school (Dr. Szarka gave her props for the analogy): Suppose you have a headache. You can take two Tylenol and the headache goes away or is tolerable. You can take 20 Tylenol and only see marginal (if any) improvement, but you just killed your liver. Same applies here. There are three methods they use to determine dosing, and about a third of doctors use each type:- Your "ideal" body weight: The "ideal" weight based upon height. This would (for me, being big) result in the lowest amount of chemo drugs - By a long shot.
- Your real weight, to a maximum of 2.0 mass to body surface area (I think). This is a more complicated formula that takes your weight into account, but has a ceiling.
- Your real weight. This results in the maximum dosing (for someone big like me).
We will play it by ear. I'm still going to get my symptoms, but the hope is given the very high cure rate, my chemosensitivity, and the fact that we've kicked the crap out of this so far... She doesn't want me curing this only to find me requiring oxygen 24/7 and unable to button my shirt, or as Suzanne's concerned not being able to zip my pants when she's not around (no, she does not zip my pants at present - perverts). I'm on board with this call.
On the brighter side of things: We went over the vaccine trial with Dr. Szarka, and the researcher in her came out right away in a loud "Ooooh...". She then got her game-face back on and said there's always risks too with trials and vaccines, but she will research it for us. Given its based on a very successful existing vaccine, it may be something she agrees with too.
We also covered the next steps following our February PET scan (which shows if cancer cells are still active anywhere in my body. Her opinion: She has every expectation that we will be in CR (Complete Response - no sign of active disease). If there is anything, it will be small and either a) inflammation and not active disease or b) small amounts of slow-growing Hodgkins in the nodes that are going to get nuked (radiation) at the end.
While she doesn't at all think we will see unchanged or enlarged uptake in my chest, she's open to possibly finishing me off with the BEACOPP cocktail for 3 cycles. BEACOPP is used for stage 3 or 4B'ers, where extremely aggressive treatment is required. The good: BEACOPP gives everyone a 97% cure rate. The bad: BEACOPP has about a 20-30% chance of causing leukemia about 10 years down the road. Again, she is fully expecting a CR (and I should note that while she is very positive, she doesn't throw stuff like that out willy-nilly; She's been right 100% of the time she's said something like that). So, I consider that badass good news.
OK, on to the tour of the Paoli Cancer Center treatment process!
First, you have to get a Barco Lounger seat. They have a bunch of 'em: Some are private rooms, others are semi-private with TV screens, or you get plugged into a public lounge area. I get in early to snag a private room so Suzanne and I have Movie Afternoon (Today was Pirate's of the Carribbean - At World's End; Not bad). So, I plop down into a Lounger, and Suzanne gets a fairly comfy chair too.
Second step, they plug me in and pull bloodwork before I get a visit with the doctor, where we go over things. Dr. Szarka, in my opinion, is one of the best doctors I've worked with. Why? She puts up with my neurotic-ness, knows poor Suzanne deals with it the other 13
days of a treatment, and (most importantly) takes the time to get ALL of our questions answered. What's really neat is we came in with a list of 11 questions. She asked 8 of them herself. She knows her business.Once we have the treatment gameplan, I go back to the Barco and in about 30 minutes, out come the custom-mixed pharmaceuticals. My drug combination is known as ABVD. This is the "tried and true cocktail that kicks Hodgkin's ass.
They give me the Adriamycin shot first (aka "Big Red", due to its Kool-Aid color), then the Bleo and Vincristine (I always forget the order), followed by the brown-bad drip of Dicarbazine. All in all, treatments go from 4-6 hours.
We're still in very good spirits (Hey Santa! I still want that clean PET scan for Christmas!!!), even with the reduction. I'd be lying if I said I wasn't scared about it emotionally, but I've had too many people with medical backgrounds (including my doctor) tell me this makes sense and will not make a relapse more likely. In fact,
Doctor Szarka point-blank said if I relapse, it will not be because of a 10% reduction in two drugs. There's no risk from her perspective.Right now, I'm tired and feeling weak, but on-board with the changes. No queasyness like I've had the last two treatments, so I'll take it since Fridays are work from home days (woohoo!). However, if my counts keep dropping with Neulasta, I may have to spend the last few months working 100% from home (to avoid infection risk) or on disability. Here's hoping we don't have to, but again: The goal is to kill this thing, so we do what we have to do.
Friday, December 21, 2007
Sorry, I've Been Slackin...
I haven't posted in a while, generally because there hasn't been anything interesting to post! Symptoms are the same ol stuff, dealing with it the same ol way. I think we're pretty much in a routine at this point.
One thing that I'm watching though -- I'm noticing myself getting a little out of breath relatively easily (playing with Steven for a few minutes, etc.). It may be nothing, it may be just the effects of treatment (I am getting more tired). The other thing it could be is Bleomicin toxicity; Bleo is one of the 4 chemo drugs given to me. Its not at all uncommon for it to happen, and it can damage the lungs if not caught in time. I'll let the doc know, and she can decide if she wants me in for another pulmonary test. My lungs are crystal clear, so I'm still learning towards 1 or 2.
I decided to not go to the Hodgkin's support forum I visit for a little bit (a couple of weeks at least). Its nothing in particular; While I know the vast majority of people recover from this and move on, there's a large population of relapsers there which, for some goofball reason, scares me right now. I don't want to think of relapse, not right now. And that's nothing against them (of course) -- They are hardcore cancer killers, and most have awesome experiences following SCT (the next step after relapse). I just don't want to think about that, because its putting ideas in my head; Its purely selfish reasons, but it is what it is. Suzanne is still checking in though and keeping me in the loop.
My Neulasta fun (aka all-over bone pain, yeeha) should be ending by tomorrow, and I'm looking forward to an awesome Christmas week. If I don't post again before Tx5, everyone have a merry Christmas!!
One thing that I'm watching though -- I'm noticing myself getting a little out of breath relatively easily (playing with Steven for a few minutes, etc.). It may be nothing, it may be just the effects of treatment (I am getting more tired). The other thing it could be is Bleomicin toxicity; Bleo is one of the 4 chemo drugs given to me. Its not at all uncommon for it to happen, and it can damage the lungs if not caught in time. I'll let the doc know, and she can decide if she wants me in for another pulmonary test. My lungs are crystal clear, so I'm still learning towards 1 or 2.
I decided to not go to the Hodgkin's support forum I visit for a little bit (a couple of weeks at least). Its nothing in particular; While I know the vast majority of people recover from this and move on, there's a large population of relapsers there which, for some goofball reason, scares me right now. I don't want to think of relapse, not right now. And that's nothing against them (of course) -- They are hardcore cancer killers, and most have awesome experiences following SCT (the next step after relapse). I just don't want to think about that, because its putting ideas in my head; Its purely selfish reasons, but it is what it is. Suzanne is still checking in though and keeping me in the loop.
My Neulasta fun (aka all-over bone pain, yeeha) should be ending by tomorrow, and I'm looking forward to an awesome Christmas week. If I don't post again before Tx5, everyone have a merry Christmas!!
Sunday, December 16, 2007
Dear Hodge...
Dear Hodge, here's why I'm going to beat you: I'm going to redo things with my kids like below, and you're not going to stop me.
May you die a quick and complete death.
Love,
Steve
(For those interested, first pic is from the beach at Duck, Outer Banks North Carolina. Second picture is on top of a trail in Acadia National Park, Maine)
May you die a quick and complete death.
Love,
Steve
(For those interested, first pic is from the beach at Duck, Outer Banks North Carolina. Second picture is on top of a trail in Acadia National Park, Maine)
Thursday, December 13, 2007
Treatment 4 - Cycle 2 Down, and a Third of the Way to the Finish Line!!!
OK, just had my next treatment. Feeling funky (as usual), and took the IV Ativan there for my stomach. Post-treatment 3 was the first time I actually experienced a little queasyness. Trying to nip that in the bud.
So, looks like the side effects were much better this time round when we actually WORKED on them, ha ha. White counts are higher than the last tx (up in the 8's), so that's good too.
Downer: I chipped the crown on my one back molar. I had a root canal a few years ago, and the crown's porcelain chipped a big chunk. Its one of the gold with porcelain over top ones, so I don't think I'm in trouble as long as the metal's on, but even so -- You can't see the metal, there's still porcelain over top.
My onc wants me going nowhere near a dentist until we're done, due to the risks of infection. As its still fully covered with porcelain, not loose, and not causing pain, I tend to agree with him.
Speaking of, Dr. Dabrow is an excellent oncologist (he's also a blood cancer guy), but he's more the research-seeming type than the teacher, which is what we love about Dr. Szarka. Then there's the jokes - I think Dr. Dabrow is definitely the straight man to Dr. Szarka's comedy routine. Still, I feel like I have some serious care at this place.
So, looks like the side effects were much better this time round when we actually WORKED on them, ha ha. White counts are higher than the last tx (up in the 8's), so that's good too.
Downer: I chipped the crown on my one back molar. I had a root canal a few years ago, and the crown's porcelain chipped a big chunk. Its one of the gold with porcelain over top ones, so I don't think I'm in trouble as long as the metal's on, but even so -- You can't see the metal, there's still porcelain over top.
My onc wants me going nowhere near a dentist until we're done, due to the risks of infection. As its still fully covered with porcelain, not loose, and not causing pain, I tend to agree with him.
Speaking of, Dr. Dabrow is an excellent oncologist (he's also a blood cancer guy), but he's more the research-seeming type than the teacher, which is what we love about Dr. Szarka. Then there's the jokes - I think Dr. Dabrow is definitely the straight man to Dr. Szarka's comedy routine. Still, I feel like I have some serious care at this place.
Monday, December 10, 2007
Yes, I'm Still Here
Sorry about the lack of posts. I've just been... Good. I feel great, which of course means its time for another treatment. I have lots to go over with Dr. Dabrow on Thursday though:
- There's a major shortage of the isotope used for PET scans, which check to see if there's any living cancer cells left in a body. Seems the brain trust that is our medical industry and government decided that having a single source for the stuff -- a 50 year old reactor in Canada -- Was a fine idea. Well, said reactor's been down a while for repairs, and the supply has dwindled out. Here's hoping we're good for my February scan.
- More importantly though, I'd like to get his opinion about a Phase 2 trial going on down at John Hopkins U Hospital in Baltimore. Seems they have a VACCINE that fights Hodgkins cells. No lie. Its for folks who complete initial treatment to clear out the cancer, and will help train your body to fight off any cells that decide they might want to make a comeback. It sounds freakin awesome; While I have a 85-90+ percent chance this isn't coming back, every little bit more is great in my eyes. I'll have the app in tomorrow, and if I'm selected I'd get the vaccine sometime next August (once all my treatments are done).
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