Well, It has been two weeks since my last doctor's appointment, and they FINALLY sent me the paperwork for that clinical trial. I still haven't gotten the hard copies, but they emailed me the pdfs of the files. I've read all 40 pages (40!!) of what will happen if I decide to do this trial, and what could happen if it goes bad, and what could happen if it goes well. It sounds to me like the science is there to say that this probably works in other cancers, and the treatment has relatively minor effects, so I am leaning toward doing the trial. I've emailed several more questions to the doctor's office, so hopefully I can get answers, and get started on the path I choose instead of just wavering at the corner.
Making this decision is much harder than I thought it would be. I think I am over-analyzing it. It is very hard to make a choice with such lasting consequences, when I can't predict with any certainty what the outcome will be with either choice.
Thursday, July 7, 2011
Friday, June 24, 2011
Ask Two Doctors, Get Four Opinions
My appointments were....interesting. I feel like I got 4 opinions from 2 doctors. The first appointment was with a medical oncologist. He took the time to show me the scans (which I hadn't seen yet) and calmed me down a bit. Apparently, the radiologist said in the report that there are 4 spots, but he only marked 3 with arrows? Neither doc could find the mysterious spot #4. The three we could find are spread out all over my lungs, with the biggest being very close to my heart. The other 2 are on either lung. (one high and one low, but I don't remember which is which.) All three, both docs emphasized are VERY small. They agree that needle biopsy is not an option at this point. Since ACC tends to be indolent, if they are cancer, doing nothing is a valid option. - There just aren't good systemic treatments. Then they start to differ in their opinions.
Doc #1 - (medical oncologist) - they may or may not be mets. Western PA residents get lung nodules at higher rates than other areas. They could be scar tissue. The fact that they grew from the last scan could just be an artifact of the scan technology. even IF (and it's a big if) they are mets, I've got lots of time to decide what to do, since ACC is such a slow grower. Wait three months, get another chest CT - NOT a PET-CT
Doc #2 - (radiation oncologist) - opinion #1 - they are mets. but, ACC is indolent - it doesn't grow quickly. Standard of care is do nothing until they get bigger or start to cause problems. Wait 3 months, get another PET-CT
Doc #2 - (rad onc again) - opinion #1b - they are probably mets, but we can do a wedge biopsy to confirm. (At this point, I DON'T like this option, neither did he, he just brought it up as an option)
Doc #2 - (rad onc again) - opinion #2 - they are mets. cyber knife 'em. He is heading a clinical trial where if there are isolated mets, they treat them with radiation surgery (not sure of the exact kind - they are mailing me info since the research coordinator had left for the day) to see if this allows your body's immune system to better deal with the micro-tumors that are present. This would entail 3 treatments (not sure if it's three per spot, or just three) with minimal short term side effects - fatigue, possible burns, possible dependence on O2 (very unlikely given my age and other risk factors), possible sore ribs for a month or more. Long term side-effects are more concerning, given my age. This would probably still be an option in 3 months, after another scan - if I still have fewer than 5 nodules - a requirement for the study.
I'm not sure what I'm going to do, besides looking into it more, find out more about the study, side effects, etc.
The good news is that they all agreed that this should currently (and if I should choose to have it after the radio surgery) should have no effect on my ability to use APR or SCBA - so I am BACK on the the clan lab team ( yay!)
Oh, and I was VERY impressed with both docs, but especially the rad onc. He even gave me his cell # if I have questions later. I do already, but I figure docs get weekends, too. I'll give him a call on monday, and make double sure they are sending me the info.
Doc #1 - (medical oncologist) - they may or may not be mets. Western PA residents get lung nodules at higher rates than other areas. They could be scar tissue. The fact that they grew from the last scan could just be an artifact of the scan technology. even IF (and it's a big if) they are mets, I've got lots of time to decide what to do, since ACC is such a slow grower. Wait three months, get another chest CT - NOT a PET-CT
Doc #2 - (radiation oncologist) - opinion #1 - they are mets. but, ACC is indolent - it doesn't grow quickly. Standard of care is do nothing until they get bigger or start to cause problems. Wait 3 months, get another PET-CT
Doc #2 - (rad onc again) - opinion #1b - they are probably mets, but we can do a wedge biopsy to confirm. (At this point, I DON'T like this option, neither did he, he just brought it up as an option)
Doc #2 - (rad onc again) - opinion #2 - they are mets. cyber knife 'em. He is heading a clinical trial where if there are isolated mets, they treat them with radiation surgery (not sure of the exact kind - they are mailing me info since the research coordinator had left for the day) to see if this allows your body's immune system to better deal with the micro-tumors that are present. This would entail 3 treatments (not sure if it's three per spot, or just three) with minimal short term side effects - fatigue, possible burns, possible dependence on O2 (very unlikely given my age and other risk factors), possible sore ribs for a month or more. Long term side-effects are more concerning, given my age. This would probably still be an option in 3 months, after another scan - if I still have fewer than 5 nodules - a requirement for the study.
I'm not sure what I'm going to do, besides looking into it more, find out more about the study, side effects, etc.
The good news is that they all agreed that this should currently (and if I should choose to have it after the radio surgery) should have no effect on my ability to use APR or SCBA - so I am BACK on the the clan lab team ( yay!)
Oh, and I was VERY impressed with both docs, but especially the rad onc. He even gave me his cell # if I have questions later. I do already, but I figure docs get weekends, too. I'll give him a call on monday, and make double sure they are sending me the info.
Thursday, June 23, 2011
I'm Back!
Wow - I was hoping I was pretty much done with this, but I guess the cancer has other plans.
I never really shared the scan results with you all - so here is the nutshell version.
The scan in December showed weird activity in my head and neck regions, but the docs said it was probably just left over from radiation "probably nothing to be nervous about, but we should watch it.". So, I had another scan in March. This time, my head and neck were fine, but there were some new really small nodules in my lungs - "probably nothing to be nervous about, but we should watch them." So, I got yet another scan this June (this time of just my chest) and the stupid nodules were bigger (but still small). So, while we can't say for 100% sure that the nodules are my cancer returning, my doc doesn't want to take chances. According him, they are still to small to biopsy, but since my particular variety of cancer is one that when it spreads, spreads to lungs, we want to take this seriously, and use this opportunity to "stay ahead of this."
So, the upshot is that I have two appointments with different oncologists tomorrow to see what they each recommend.
I never really shared the scan results with you all - so here is the nutshell version.
The scan in December showed weird activity in my head and neck regions, but the docs said it was probably just left over from radiation "probably nothing to be nervous about, but we should watch it.". So, I had another scan in March. This time, my head and neck were fine, but there were some new really small nodules in my lungs - "probably nothing to be nervous about, but we should watch them." So, I got yet another scan this June (this time of just my chest) and the stupid nodules were bigger (but still small). So, while we can't say for 100% sure that the nodules are my cancer returning, my doc doesn't want to take chances. According him, they are still to small to biopsy, but since my particular variety of cancer is one that when it spreads, spreads to lungs, we want to take this seriously, and use this opportunity to "stay ahead of this."
So, the upshot is that I have two appointments with different oncologists tomorrow to see what they each recommend.
Wednesday, December 8, 2010
12-8-10 - more scans!
Thought I'd give you all an update -
I had a follow-up appointment with my surgeon yesterday. In some ways, I can't believe its been over 4 months since my surgery, in other ways they have been the longest 4 months of my life. I think I have come through it fairly well.
The doc wants me to have a follow-up PET scan (from radiation) this Friday, which is freaking me out more than expected. I know, it's standard, but unfortunately, my worry is not listening to logic. Fortunately, the worry seems to want to be channeled into cleaning and organizing, something I usually despise. (kitchen cleaned, laundry done, papers organized...) Oh well, hopefully I will get the scan results before Christmas.
On a side note - my taste is mostly back, but the sweet flavors are weaker than normal. Very helpful for avoiding the pesky holiday cookie calories :)
Saturday, November 20, 2010
11-20-10 Almost Thanksgiving
Hi all! I just conducted a little scientific experiment - I made two glasses of water for myself and mixed sugar into one. Then I tasted both of them. I could taste the sugar!!! It was weak, but it was there!!This experiment was shortly followed by me tasting (yes, TASTING!!) a bit of salt out of the salt shaker!!!! I am so happy about this - you have no idea how nasty certain foods are with no sweet or salty flavor to balance them out.
That is not to say that my sense of taste is back to "normal." Everything (except veggies, which I don't particularly like anyway) tastes a bit off. Sour is still much stronger than other flavors, but I think it will balance out eventually.
you all have no idea how happy this makes me!!!
That is not to say that my sense of taste is back to "normal." Everything (except veggies, which I don't particularly like anyway) tastes a bit off. Sour is still much stronger than other flavors, but I think it will balance out eventually.
you all have no idea how happy this makes me!!!
Sunday, November 14, 2010
11-14-10 Recovering nicely
Well, I am officially 18 days done with my 30 day course of rad, and I am doing pretty well. My energy levels are pretty much back to normal. I haven't started walking or working out in the mornings yet, but I think I am going to start this week. I did spend the last four days chasing my nieces and nephew - they wore me out - but I think that I would be worn out even if I had never had health issues. Those kids have so much energy!
The sore throat is almost gone, and while my neck/jaw are still stiff, it is minimal. My skin is almost normal - still dry, but no longer red. I thought the ringing in my ears was gone, but my ear started ringing as I typed this, but it was the first time in about week, and it only lasted about 5-10 seconds.
I am still very much missing my sense of taste. I think I may have some sense of taste, but still no salty or sweet. My dad suggest I try a lemon yesterday to see if I could taste any sour, and there was a very mild sour taste on some of my tongue (a very weird sensation, but yay!). Still don't have much there. Some veggies have a little taste, but not much. On the bright side, since my surgery, I've lost about 25 lbs - 15 more and I'd be in the so-called "normal" range, but I don't think I'm going to make it. I didn't want to buy a whole new wardrobe anyway :)
I do have a cute niece story (they are 4 years old) - My mom told them that because of the medicine the doctors gave me, candy tasted bad now. This very much confused them. "Just try one, you'll like it," one said. So I explained that I tried one, and it did taste bad - My tongue is broken, but it will get better. My nieces took it upon themselves to pack up a bunch (not just one or two pieces) of their halloween candy for me to eat "when my tongue is better." One of the best gifts I have ever gotten!
Guess that's it for the updates. Hope you all are doing well.
The sore throat is almost gone, and while my neck/jaw are still stiff, it is minimal. My skin is almost normal - still dry, but no longer red. I thought the ringing in my ears was gone, but my ear started ringing as I typed this, but it was the first time in about week, and it only lasted about 5-10 seconds.
I am still very much missing my sense of taste. I think I may have some sense of taste, but still no salty or sweet. My dad suggest I try a lemon yesterday to see if I could taste any sour, and there was a very mild sour taste on some of my tongue (a very weird sensation, but yay!). Still don't have much there. Some veggies have a little taste, but not much. On the bright side, since my surgery, I've lost about 25 lbs - 15 more and I'd be in the so-called "normal" range, but I don't think I'm going to make it. I didn't want to buy a whole new wardrobe anyway :)
I do have a cute niece story (they are 4 years old) - My mom told them that because of the medicine the doctors gave me, candy tasted bad now. This very much confused them. "Just try one, you'll like it," one said. So I explained that I tried one, and it did taste bad - My tongue is broken, but it will get better. My nieces took it upon themselves to pack up a bunch (not just one or two pieces) of their halloween candy for me to eat "when my tongue is better." One of the best gifts I have ever gotten!
Guess that's it for the updates. Hope you all are doing well.
Wednesday, November 3, 2010
11-3-10 working on recovery
Hello all!
Well, it's been a week and a day since my last radiation treatment and the improvement in my energy level is amazing! I wouldn't say that I'm back to 100%, but at least 85% :). I've been working pretty much full time, although I did sleep in a half hour this morning.
Another big step is that my appetite is coming back! It is not easy when I can't taste anything, but I am eating more and a bigger variety of foods. My throat and mouth are still a bit sore and swollen, but not nearly as bad.
I do still really miss my sense of taste - I have been dreaming about food again. The other night, I dreamed I made a huge chocolate gob cake with a fancy raised design on top. I had extra icing, so I just sat down and ate the whole bowl of icing! It was delicious! That same night, I also dreamed of chocolate chip cookies. Some folks have asked me what it is like to not be able to taste - I can still smell the food, but when I put it my mouth and chew I get no extra sensations - no sweet, salty, sour etc.
Well, it's been a week and a day since my last radiation treatment and the improvement in my energy level is amazing! I wouldn't say that I'm back to 100%, but at least 85% :). I've been working pretty much full time, although I did sleep in a half hour this morning.
Another big step is that my appetite is coming back! It is not easy when I can't taste anything, but I am eating more and a bigger variety of foods. My throat and mouth are still a bit sore and swollen, but not nearly as bad.
I do still really miss my sense of taste - I have been dreaming about food again. The other night, I dreamed I made a huge chocolate gob cake with a fancy raised design on top. I had extra icing, so I just sat down and ate the whole bowl of icing! It was delicious! That same night, I also dreamed of chocolate chip cookies. Some folks have asked me what it is like to not be able to taste - I can still smell the food, but when I put it my mouth and chew I get no extra sensations - no sweet, salty, sour etc.