Well, more information now....
My oncologist called me this morning and let me know that Karmanos will do the stereotactic radiation on my brain tumors (or as they call them lesions). We will be going down on Sunday, meet with the doctors in the afternoon on Monday, hang around Detroit that evening and then Tuesday I will have the radiation. Again, I will go there, they will put the halo on and start the process of mapping the radiation sites. It is possible that they might not be able to do it all in one day; if that is the case, I may stay in the hospital with the halo on or they may take it off and then do the second round of radiation on Wednesday. We won't know this until we meet with them on Monday (or possibly not even until Tuesday). The poor woman who called me to discuss this had MANY questions. She was very kind about answering all of them. One of my questions is that I had stereotactic here in Marquette and my biggest fear of having it again is getting the halo off without sedation. I would definitely do it again - the pain was horrible but I will take that pain for that short amount of time. She said we would discuss that further at the Monday appointment.
After the radiation, I will start zelboraf (vemurafenib) - the twice a day chemo pill specific to melanoma patients with the specific BRAF mutation which was recently FDA approved.
While I definitely cried (didn't look to good going back into my workshop after those few calls with tears and puffy eyes but oh well), this information has definitely lifted my spirits again.
Thank you to everyone for all of the thoughts, prayers and love!
I believe!
Jodi
visitors to this page
Wednesday, October 26, 2011
Tuesday, October 25, 2011
Needing LOTS of Prayers and a Little Humor Right Now - 10/25/11
Today I went for visit with my oncologist for the follow up on my PET scan as well as the results of what the tumor board (which included my oncologist, my neurosurgeon and my radiology oncologist) thought would be best. Of course, as in one of my past blogs, you take the good and you take the bad - after all, it is the Facts of Life.
So, since I am trying to continue my optimism (ha ha), I will start with the good. My PET scan showed that both the tumor in my liver and hip had gotten smaller - there are still tumors there but they are smaller. I believe that this meant that the Ipi has worked on both areas. I also had radiation therapy on my hip so that probably helped some with that area.
Okay, so on with the not as good news.... my last blog talked that my brain MRI showed 4 tumors. I actually have 6 tumors on my brain. My oncologist has started me back on the swelling medication because the tumors show some swelling. She also was in contact this morning with the doctor that I saw at Karmanos in Detroit as well as doctor at U of M. She would like to see if they would be able to do stereotactic (targeted to the specific tumor sites) brain radiation on me. Usually their criteria is three tumors or less but she is hoping that because of my age, they will accept me for this procedure. The other issue is whether they could do it soon. If this is an option, they will send me for radiation and then start me on that medication for BRAF (I will post the name again on my next blog). If they do not accept me and are not able to do it soon, I will have full brain radiation at Marquette and will start on a different medication for this time. (This type of stereotactic is not an option in Marquette.) After it is done, I will be started on the BRAF. She also made sure to tell us that some times the Ipi will show that tumors are worse or the same and then a couple of months later, it could show significant improvement. She said this still could happen.
I was scheduled to leave for Lansing today for work with my mom and aunt. My oncologist was okay with it as long as I started on the swelling medication. She said that if either of the doctors called with more information, she would be in touch with me by cell. I haven't heard from her yet but will update my blog once I know what my next procedures will be.
Today was a difficult day. We had a lot of information to digest (of course, we are always hoping for some good news). She also said that we haven't really talked about this and with us having small kids, she would suggests that I get my affairs in order. As we've all known, this is something that needs to be done. Kurt and I have talked a bit but need to have much deeper discussions. This was probably the hardest of things for us to think about during that visit. I think had we heard it a different day, it might have been accepted a little easier. (Too much negative information in one visit.)
We have been planning to take our kids to Disney for years and decided earlier this year that we would try to take them in March. Because of everything that has happened, we decided it is probably best to move this trip up to as soon as we can. My oncologist suggested going after radiation.
Today was a very emotional day for us. I've shed MANY tears today! That, however, does not mean that I am giving up... I still believe!
I will update my blog as soon as we know the next steps. Thank you all for your thoughts and prayers!
So, since I am trying to continue my optimism (ha ha), I will start with the good. My PET scan showed that both the tumor in my liver and hip had gotten smaller - there are still tumors there but they are smaller. I believe that this meant that the Ipi has worked on both areas. I also had radiation therapy on my hip so that probably helped some with that area.
Okay, so on with the not as good news.... my last blog talked that my brain MRI showed 4 tumors. I actually have 6 tumors on my brain. My oncologist has started me back on the swelling medication because the tumors show some swelling. She also was in contact this morning with the doctor that I saw at Karmanos in Detroit as well as doctor at U of M. She would like to see if they would be able to do stereotactic (targeted to the specific tumor sites) brain radiation on me. Usually their criteria is three tumors or less but she is hoping that because of my age, they will accept me for this procedure. The other issue is whether they could do it soon. If this is an option, they will send me for radiation and then start me on that medication for BRAF (I will post the name again on my next blog). If they do not accept me and are not able to do it soon, I will have full brain radiation at Marquette and will start on a different medication for this time. (This type of stereotactic is not an option in Marquette.) After it is done, I will be started on the BRAF. She also made sure to tell us that some times the Ipi will show that tumors are worse or the same and then a couple of months later, it could show significant improvement. She said this still could happen.
I was scheduled to leave for Lansing today for work with my mom and aunt. My oncologist was okay with it as long as I started on the swelling medication. She said that if either of the doctors called with more information, she would be in touch with me by cell. I haven't heard from her yet but will update my blog once I know what my next procedures will be.
Today was a difficult day. We had a lot of information to digest (of course, we are always hoping for some good news). She also said that we haven't really talked about this and with us having small kids, she would suggests that I get my affairs in order. As we've all known, this is something that needs to be done. Kurt and I have talked a bit but need to have much deeper discussions. This was probably the hardest of things for us to think about during that visit. I think had we heard it a different day, it might have been accepted a little easier. (Too much negative information in one visit.)
We have been planning to take our kids to Disney for years and decided earlier this year that we would try to take them in March. Because of everything that has happened, we decided it is probably best to move this trip up to as soon as we can. My oncologist suggested going after radiation.
Today was a very emotional day for us. I've shed MANY tears today! That, however, does not mean that I am giving up... I still believe!
I will update my blog as soon as we know the next steps. Thank you all for your thoughts and prayers!
Monday, October 10, 2011
Darn Tumors - 10/10/2011
Today I had my follow up MRI regarding the tumors in my brain. The last MRI was approximately 8 weeks ago. After the MRI, we met with the neurosurgeon to discuss these results. The two tumors that were there in August were still there and bigger; there are now two more new tumors. The neurosurgeon will set up a time for him, my radiation oncologist and my oncologist to discuss my results during the tumor board in a few weeks. It sounds like the neurosurgeon would think it best for me to go through full brain radiation as well as get on the new chemotherapy drug.
My PET scan is next week and I have an appointment to see my oncologist the same day that the tumor board meetings the following week. I should know exactly then what they have decided as well as what my PET scans showed with the tumors of the liver and hip as well as if there are any (hopefully not) new ones.
I thank everyone for the prayers and thoughts! I still believe!
My PET scan is next week and I have an appointment to see my oncologist the same day that the tumor board meetings the following week. I should know exactly then what they have decided as well as what my PET scans showed with the tumors of the liver and hip as well as if there are any (hopefully not) new ones.
I thank everyone for the prayers and thoughts! I still believe!
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