OK folks, here we go. My apologies for torturing you all, it has just been a really exhausting couple of weeks between sudden yard sale and the trip. I am feeling a bit more lively and clear headed today.
So my roomie and I made a 5.5 hour trip each way to go to Billings Clinic Cancer Center on Tuesday. They have a beautiful new cancer center that was just added onto the clinic. I believe it just opened in August.
First impression of doctor, why is it this one didn't appear to have opened my huge file before she walked in the door either? I don't get this, and this is not the first time I have felt this. However the last person to do this did take great care of me I thought. The look on M's and I's face was priceless I'm sure, when she asked, "What is it you are wanting me to do for you?"
So the good news is what I was hoping for, she saw that all my treatment thus far looked appropriate. She does think that the Faslodex (hormonal therapy) is worth a crud though. I will take it for now, seeing how it's too late to take the shot back. As long as I can handle it, something must be better then nothing at the rate this baby is growing. For now meaning until we figure out the next best step.
So now my next step is, I scheduled an office visit with my Onc to talk about this. (The doc I saw in Billings is new to the clinic, but not new to oncology. She came from the east coast. Actually, what she said was, if she could get me to NY, she would recommend that I go see a particular doctor At Cornell-NY Hospital that she knew that had some great results with the regiments that she works.) I am going to request another biopsy done on my lemon on my chest. Apparently tumors have been known to change their expression. Meaning I am my cancer feeds off the estrogen that my body produces. This could have changed up to progesterone positive, but H says that is rare. If it did change up, that means that opens up a lot more drugs that have possibilities.
Another option to discuss, is if I am still releasing high amounts estrogen. I'm still a little shaky on some of this info, so I might be a little off. My understanding is if your estrogen is really high, they can do a Oophoroectomy. This is when they poke to holes in your belly and pull out your ovaries. As far as I can tell, I have no use for my ovaries. The odds of me ever having children now are about 99.9% chance not going to happen- by choice, and thanks to chemo. Some people are afraid of what this will do to their moods. Me- I worry very much that my head is on straight. I am willing to take a chance and lose my ovaries if this becomes a viable option. That sounds better then the moods that the chemo and cancer not going away is doing to me! I now it is estrogen fueling this, but no one has ever talked to me about how high they are. In my mind it makes sense. This stuff is growing very fast, so maybe I do produce very high levels estrogen. I'm not positive, but I think I read that stress alone will do that. So it stands to reason that this may be the case. My stress is still there, just the cause is shifting. It is getting better, and I keep plugging away trying to make the necessary changes to get rid of it. It just takes time and is still a work in progress.
Let's see- she likes tumor markers, which my Onc does not use. I am going to ask him if we can use tumor markers additionally. For his purposes, it may not be a big deal. For my purposes I would like him to use markers. Except for my purposes, theoretically I should not be on any other treatment because how would we if it was my doctor's regiment, or my regiment that was making the difference.
Additionally, she recommended getting tested to make sure I am post-menopausal instead of basing it on not bleeding for a year. She said to check my Vitamin D level also. I got lost there, as I don't now if this shows in my labs, or what the correct level is. Other then that, she did name a couple of chemos regiments that we have not done, that she thinks are still effective, even though they are old-school. These are Doxil (Liposomal adriamycin?) and CMF (cytoxan methotrexate).
Ok great- so what does all this mean you ask? I don't know, but it is bad shit period. We have got to get this under control! My left shoulder is starting to hurt a little, most likely due to all the stuff growing on my chest, under collar bone, and up my neck. Lortab 5 still takes care of it, but I don't like taking all the addictive pills. I'm going to beat this, but I don't want to be an addict by the time it is all over. The part that really is starting to bother me, is how many different kinds of chemo we have tried. This doctor is as bothered as everyone else seems to be regarding the effectiveness of the Docetaxol, and how it made it grow so fast. If we don't get a grip on this and keep trying chemo, eventually the chemo will kill me. I am lucky my system is still strong, but it is taking a toll even if it is not so obvious.
My mind still goes back to cannabis as a solution. Maybe it doesn't work for all, but I just have a hard time believing that all these people believe in something that doesn't work. I have also just recently been told that the effectiveness off cannabis oil has the tendency to diminish with the more chemo one undergoes. The other thing that really makes sense to me, and I can't figure out how to make it happen is my diet of course. Once again this doc recommended a raw and organic diet as much as possible. These two solutions make me just want to ball up in a flippin' corner and cry! I just can't see that either of these solutions are in my reach, due to finances. The diet being the cheaper of the two, but harder to accomplish probably. Tastes good and affordable has been my diet still. I haven't felt like cooking much. Oh, to have my own healthy private chef! Which is not going to happen. I wonder what would happen if I could get my head a little more clear and focused, came off of chemo and start getting to feel more energetic, and focus on a cannabis oil and diet regiment. I can't stop myself from thinking that this may sound like a better option then more chemo by this point in the game. It's not going to hurt me. The chemo will eventually take me out if it doesn't fix it.
So that's where we are at folks. I wish it was better news, but at least it is not worse. It is still as bad as I thought that it was. I think I am hungry for tacos again. Why tacos? I can't get rid of my taco craving. Taco Bell is not real tacos, but it solves the craving fast!
So my roomie and I made a 5.5 hour trip each way to go to Billings Clinic Cancer Center on Tuesday. They have a beautiful new cancer center that was just added onto the clinic. I believe it just opened in August.
First impression of doctor, why is it this one didn't appear to have opened my huge file before she walked in the door either? I don't get this, and this is not the first time I have felt this. However the last person to do this did take great care of me I thought. The look on M's and I's face was priceless I'm sure, when she asked, "What is it you are wanting me to do for you?"
So the good news is what I was hoping for, she saw that all my treatment thus far looked appropriate. She does think that the Faslodex (hormonal therapy) is worth a crud though. I will take it for now, seeing how it's too late to take the shot back. As long as I can handle it, something must be better then nothing at the rate this baby is growing. For now meaning until we figure out the next best step.
So now my next step is, I scheduled an office visit with my Onc to talk about this. (The doc I saw in Billings is new to the clinic, but not new to oncology. She came from the east coast. Actually, what she said was, if she could get me to NY, she would recommend that I go see a particular doctor At Cornell-NY Hospital that she knew that had some great results with the regiments that she works.) I am going to request another biopsy done on my lemon on my chest. Apparently tumors have been known to change their expression. Meaning I am my cancer feeds off the estrogen that my body produces. This could have changed up to progesterone positive, but H says that is rare. If it did change up, that means that opens up a lot more drugs that have possibilities.
Another option to discuss, is if I am still releasing high amounts estrogen. I'm still a little shaky on some of this info, so I might be a little off. My understanding is if your estrogen is really high, they can do a Oophoroectomy. This is when they poke to holes in your belly and pull out your ovaries. As far as I can tell, I have no use for my ovaries. The odds of me ever having children now are about 99.9% chance not going to happen- by choice, and thanks to chemo. Some people are afraid of what this will do to their moods. Me- I worry very much that my head is on straight. I am willing to take a chance and lose my ovaries if this becomes a viable option. That sounds better then the moods that the chemo and cancer not going away is doing to me! I now it is estrogen fueling this, but no one has ever talked to me about how high they are. In my mind it makes sense. This stuff is growing very fast, so maybe I do produce very high levels estrogen. I'm not positive, but I think I read that stress alone will do that. So it stands to reason that this may be the case. My stress is still there, just the cause is shifting. It is getting better, and I keep plugging away trying to make the necessary changes to get rid of it. It just takes time and is still a work in progress.
Let's see- she likes tumor markers, which my Onc does not use. I am going to ask him if we can use tumor markers additionally. For his purposes, it may not be a big deal. For my purposes I would like him to use markers. Except for my purposes, theoretically I should not be on any other treatment because how would we if it was my doctor's regiment, or my regiment that was making the difference.
Additionally, she recommended getting tested to make sure I am post-menopausal instead of basing it on not bleeding for a year. She said to check my Vitamin D level also. I got lost there, as I don't now if this shows in my labs, or what the correct level is. Other then that, she did name a couple of chemos regiments that we have not done, that she thinks are still effective, even though they are old-school. These are Doxil (Liposomal adriamycin?) and CMF (cytoxan methotrexate).
Ok great- so what does all this mean you ask? I don't know, but it is bad shit period. We have got to get this under control! My left shoulder is starting to hurt a little, most likely due to all the stuff growing on my chest, under collar bone, and up my neck. Lortab 5 still takes care of it, but I don't like taking all the addictive pills. I'm going to beat this, but I don't want to be an addict by the time it is all over. The part that really is starting to bother me, is how many different kinds of chemo we have tried. This doctor is as bothered as everyone else seems to be regarding the effectiveness of the Docetaxol, and how it made it grow so fast. If we don't get a grip on this and keep trying chemo, eventually the chemo will kill me. I am lucky my system is still strong, but it is taking a toll even if it is not so obvious.
My mind still goes back to cannabis as a solution. Maybe it doesn't work for all, but I just have a hard time believing that all these people believe in something that doesn't work. I have also just recently been told that the effectiveness off cannabis oil has the tendency to diminish with the more chemo one undergoes. The other thing that really makes sense to me, and I can't figure out how to make it happen is my diet of course. Once again this doc recommended a raw and organic diet as much as possible. These two solutions make me just want to ball up in a flippin' corner and cry! I just can't see that either of these solutions are in my reach, due to finances. The diet being the cheaper of the two, but harder to accomplish probably. Tastes good and affordable has been my diet still. I haven't felt like cooking much. Oh, to have my own healthy private chef! Which is not going to happen. I wonder what would happen if I could get my head a little more clear and focused, came off of chemo and start getting to feel more energetic, and focus on a cannabis oil and diet regiment. I can't stop myself from thinking that this may sound like a better option then more chemo by this point in the game. It's not going to hurt me. The chemo will eventually take me out if it doesn't fix it.
So that's where we are at folks. I wish it was better news, but at least it is not worse. It is still as bad as I thought that it was. I think I am hungry for tacos again. Why tacos? I can't get rid of my taco craving. Taco Bell is not real tacos, but it solves the craving fast!
No comments:
Post a Comment