My panties were all in a bunch in my last post because my doctor was giving me a hard time about providing quantitative data on the size of my tumor before and after the 6 week IMRT Radiation and Chemotherapy treatment. After a long talk with my doctor, and talking with my sisters, I was reminded the goal of this treatment was to stop the tumor from growing, not make it smaller. I wrote in this blog before the treatment started that the tumor has already damaged my brain. Even if the treatment totally kills the tumor, the damage is already done. The treatment is to stop any more damage from happening. I knew this, but I guess I got caught up wanting some vindication for being subjected to this treatment.
I still not like the puppy-mill atmosphere at the doctors office, and I do not think they handled my request very well, but changing doctors at this point would involve more stress than it would relieve. I'll come back to this after the 1 year Chemo cycle is complete.
I had a slight fever over the weekend, taking loads of ibuprofen to keep it down. My legs are so sore it feels like I took a 20 mile hike, but in reality have been resting a lot. Maybe I have been resting too much.
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my husband had his first MRI post radiation and they said - mild decrease which seems to be the same as what was said to you - "looks smaller". We were just hoping that there would not be any progression -so relieved. He has not started the 5 day cycle of temodar yet and reading your posts is making me fearful of what will be happening. Sometimes my husband just doesn't want to go through any more treatment so worried that the increased dose of chemo will want to give up even more. I am just hoping he can tolerate the symptoms. Thanks for posting - it helps to know what is ahead
ReplyDeleteAnonymous,
ReplyDeleteFirst I would like to reassure you that, so far, the 5/23 cycle is much easier to handle than the 6 week concurrent IMRT and Chemo. I also have thoughts of stopping treatment. I would think, maybee if I just took the Keppra I would be OK. But this is very short sighted. Undergoing IMRT/Chemo treatment for a year or two is a very small part of anyone's life. Five years from now you'll be like - 'yeah, that was a rough time of my life'. Without the treatment this progressive disease may just get worse and you might regret going through it. The treatment and the side effects are your fight, you can choose to fight or wait and see what happens. My doctors warned me that 'wait and see' will result in irreversible conditions. I did not want to wait until I lost motor control in the left side of my body before undergoing treatment. The side effects are uncomfortable, but I am still able to live a relatively normal life and I now I am doing all I can to fight this disease. If you would like to communicate outside this public forum, my personal email is ed_slas@yahoo.com .
Your added insight will help me give him more information about the shortsigtedness of giving up treatment. I follow your blog to gain information about what side effects to expect when he goes on the 5/23 cycle. His oncologist says that most of his patients just need to take a nap in the afternoon and from reading on cancer compass and cancer network - that does not seem to be the case. Knowing what is occurring from the chemo rx might help me to prepare him ahead of time. Otherwise he worries that the tumor is getting worse and then just wants to throw in the towel. Thank you for giving me your email address-I would like to contact you if I have more questions.
ReplyDeleteEd & Holly,
ReplyDeleteThe frustration you feel is completely understandable. My M-I-L had hip replacement surgery at Rush last fall. While the surgeons did a great job,the lack of being treated like an individual human being just adds to the trauma of what brought you there in the first place. Stay strong. We're always thinking of you and your family