Wow, it's been so long I honestly forgot the URL to get here. Sorry...
Haven't had much to update until now. Still going every three weeks for trial preventative chemo. Because the neuropathy got so bad, they have reduced my dose by 25%. I know that I have about 4 or 5 left so, IF I keep going, I should be done by April of this year. I say "If" because I threaten to quit all the time and one of these days I may actually do it.
Also, this chemo I am on, was approved by the FDA for very limited use in August. Not approved for use in the way it's being used on me, so I still need to stay in the trial. The chemo is now known as Aceridis. Since it's approval, I have received more info about the drug. Last month, I actually got PAID to do a market research survey for the company that produces the chemo. It proved to be worth more then just a check. I was given so much more information about the drug then my doctor ever shared with me. This survey also gave me some piece of mind, because I learned going through it that, my side effects aren't "rare" or "unusual", as my doctor told me. Almost all of my side effects were listed on slides shown to me as part of the survey. In the past, my doctor has acted like my fever made me an enigma and the other side effects were either just in my head, or the result of something else.
Finally, I do have one concern at the moment. I've started to have night sweats again. The night sweats were the biggest (and one of the only) symptom of my Hodgkins. I am really afraid that it is back. My last scan was in early November and was clean, but it was only a CT scan, which doesn't show everything. My next PET scan isn't until March, but I am trying desperately to convince my Dr to move it up. He is reluctant to do so, and doesn't really give me an answer as to why. I have a suspicion that he is more concerned with the clinical trial, then what might be in my best interest.
Haven't had much to update until now. Still going every three weeks for trial preventative chemo. Because the neuropathy got so bad, they have reduced my dose by 25%. I know that I have about 4 or 5 left so, IF I keep going, I should be done by April of this year. I say "If" because I threaten to quit all the time and one of these days I may actually do it.
Also, this chemo I am on, was approved by the FDA for very limited use in August. Not approved for use in the way it's being used on me, so I still need to stay in the trial. The chemo is now known as Aceridis. Since it's approval, I have received more info about the drug. Last month, I actually got PAID to do a market research survey for the company that produces the chemo. It proved to be worth more then just a check. I was given so much more information about the drug then my doctor ever shared with me. This survey also gave me some piece of mind, because I learned going through it that, my side effects aren't "rare" or "unusual", as my doctor told me. Almost all of my side effects were listed on slides shown to me as part of the survey. In the past, my doctor has acted like my fever made me an enigma and the other side effects were either just in my head, or the result of something else.
Finally, I do have one concern at the moment. I've started to have night sweats again. The night sweats were the biggest (and one of the only) symptom of my Hodgkins. I am really afraid that it is back. My last scan was in early November and was clean, but it was only a CT scan, which doesn't show everything. My next PET scan isn't until March, but I am trying desperately to convince my Dr to move it up. He is reluctant to do so, and doesn't really give me an answer as to why. I have a suspicion that he is more concerned with the clinical trial, then what might be in my best interest.
Thanks for keeping us updated. Your a breave person.
ReplyDeletegood luck and you know what I know he is a dr but you need to keep you first. and keep fighting for him to listen to you. if it wasn't so serious i would tell you to look for a different doctor one that listens.
ReplyDeletelove you jess stay strong may this year bring you better health.