Radiation Graduate (AGAIN) - 12/30/2011

I thought I would blog quickly about being done with full brain radiation.  I sometimes forget that I post stuff on facebook but not everyone is on facebook.  I had my 10th (and final) radiation treatment yesterday afternoon and then Kurt and I went out to the Portside for a celebratory lunch.  I was given my mask to take home (pictures below) and had a great suggestion from a friend whose mother went through radiation treatments - have a MASK BURNING CEREMONY!  I will plan to do that at some point - not sure when yet but definitely will need to do it.  I'm not exactly sure why I'd want to keep it anyway.  As I've said about most of my radiation treatments (halo and mask), it reminds me more of the SAW movies than anything! 

I do want to say thank you to the wonderful workers in the radiation department at MGH!  They were very patient with me when I was EXTREMELY nervous about being under the mask and they answered all of my MANY questions.  My dad had me laughing because when I go in, they always say, "Jodi, please tell us your name and date of birth."  He suggested that I ask what they would do if I gave them the wrong name and date of birth ... so yesterday I asked them (AFTER I told them my name and date of birth of course).  They said that I'd be surprised to know that both Barrack Obama and Marilyn Monroe have been there for radiation.  (So, apparently there are either people who truly don't know who they are or are goofing around with them.)  Again, thank you to all of the wonderful people who take care of me when I have appointments!

The actual radiation treatment lasted @ 20 seconds on each side of my head.  Every day I would say a prayer when the treatments were going - I can only hope that those prayers produce the miracle that I was praying for!

Here are a couple of pictures of the mask that I had to wear for radiation:

This is my mask sitting on my kitchen table!

This is a picture of what radiation and the mask looks like on a flyer they gave me ...
much better than the picture that I took with it on to show my family (a picture I will not share)!

I'm looking forward to 2012 and hoping that it is a much healthier year!  I meet with my oncologist next week and will hopefully have a better idea of what treatment I will be taking part in.  I know it might not be easy as most chemo patients do get sick, lose their hair, etc.  I just hope that whatever I have to go through, I am able to have some relief from brain tumors and be here for a LONG time! 

I believe!

Two Steps Back, One Step Forward? - 12/19/2011

I know the saying is "One step forward, two steps back" but I am wondering if because I had a few steps back with my last MRI that there is the possibility of the news from the oncologist today being a step forward.  I also contemplated calling this one "The Most UN-Amazing Brain" ... you'll see why after the rest of my blog...

Today Kurt and I met with the oncologist in the morning.  She indicated that my PET scan again showed improvement in both my liver and hip tumors which means that the Ipilimumbab is still working on those areas.  There was also no signs of new tumors!  Good news in my eyes (one step forward).  :)

Of course, we discussed my previous MRI in more detail.  She indicates that the majority of tumors that were radiated in Detroit were still there and the same size although a few have grown a bit.  There is also new tumor growth.  I asked more questions about all of the brain tumors and learned that as long as the tumor(s) remain the same size (or smaller) and no new tumors, they are considered okay.  With the recent MRI showing that I am still producing new tumors (hence "The Most UN-Amazing Brain"), I started the full brain radiation last week.  Because it wasn't clear to any of us, I asked her if the radiation just did not work down in Detroit since I had new tumor growth.  She explained radiation in this way:  stereotactic or gamma knife radiation (direct radiation to the tumor(s) sites - which is what I have had previously) is best described as "weeding" your grass.  You put weed killer on the weed(s) but even if it kills the weeds, there may still be seedlings that could develop into more weeds.  Full brain radiation (radiation to your whole brain) puts a weed killer on your whole brain and hopes to destroy both the weeds and the seedlings.  More on radiation in a few...

So, because the Ipi continues to work on the two tumors, she is hesitant on starting me on the BRAF chemo drug.  She said she'd like to save that option in case those tumors start growing or  I have new tumor growth.  All of the following are options after I am done with radiation:

- Wait it out for 4-6 weeks with no medications; have a repeat MRI (and PET scan????) to see if the radiation alone has helped.
- Ipi treatments again ... although they appear to not be working on my brain so this is probably the option we are least considering right now?!?!
- The original option of the Temador chemo drug (this is the first drug she was thinking of giving me before Ipi became FDA approved).  This drug is used for patients' with brain tumors and tumors usually react to it.  It's a pill each day for 5 days and then you go a month without medication.  In some people there are side effects such as hair loss, nauseau, etc.
- BRAF chemo drug (zelboraf) - two pills, twice a day; newly FDA approved and considered to be working well on melanoma patients with brain tumors.

I did ask if we could take one of the chemo drugs along with Ipi since the Ipi is working on the liver/hip tumors.  She said that there currently is a clinical trial on that so it is not an option yet but that there is an IV drug like temador which could be used with Ipi (which, I am guessing, is another route or option for me as well). 

The oncologist said that if she were to ask 10 oncologists that have worked with melanoma patients what they would suggest, she would get 10 different answers.  So for now I will continue my radiation treatments and we will meet with her after the new year to decide what option we (her, Kurt and myself) think I should take part in. 

This afternoon I had radiation #3 of 10.  It was VERY quick today!  For someone who is very claustrophobic, this radiation has made me a little nervous.  They mold a see-through white form over your head which attaches to the radiation table so you cannot move your head at all.  The first two days my face must have been more swollen because I had the boxes (or "waffles") on my face when I came out - shows how tight it is.  Today I could move my lips a little bit and the radiation was a matter of minutes from start to finish so I was okay!  Only 7 more to go ... I can do it!!!

As for what happens next, I will post as soon as I know more!  :)

Finally, I hope that people know that I blog mostly to get everything that is happening off my chest as it is therapeutic to me; second, so that my family/friends/etc can hear it first hand from me and they are getting the most accurate information; third, if any bit of this information can ever save someone I know from going through this same situation; and, lastly, as with any person who is going through some medical trauma, I am looking for nothing more than support!

Medical Update (and Florida/Disney Magic Hopefully Coming Soon...) - 12/13/2011

I've been wanting to blog since we have been on our vacation or home but there has been a lot of things that either need to get done or are priorities at this time.  I thought I would blog tonight about some things that are going on and then in a near-future blog, will update on our wonderfully magical trip to Florida!

As stated in the blog previous to us leaving for Florida, I was having some issues and went in for an MRI on Wednesday before Thanksgiving.  We then met with the neurosurgeon's PA that day and learned that my six tumors were still there and enlarged and were slightly swollen.  They also thought that I was having some seizure activity and put me back on the anti-seizure medication, Keppra.  They did give us the okay to go on our trip and so we (Kurt and I) decided that we were going to keep this information to ourselves until our return.  We felt that we didn't learn a whole lot of new information and also weren't sure exactly what was going on - plus, we wanted to give the 'worrying' as much of a rest during this vacation and knew that if our families were aware of these issues, they would be calling/worrying more possibly.

When we returned from vacation, there was a voicemail message from my oncologist from the Monday prior so yesterday I called her.  She was not in the office the day that I had my MRI so she wanted an update on what happened.  She knew that we knew of six brain tumors still and said that she would contact the radiation oncologist and see what his suggestions/thoughts were; she also said I would see her next Monday (12/19) and would most likely start the BRAF Inhibitor chemo drug.  The radiation oncologists' office called yesterday and set up an appointment on Wednesday.  Both of the kids have Christmas' programs that day so they rescheduled my appointment to today.  So, today I had my PET scan and then met with the radiation oncologist.

I will not know anything about my PET scan until I meet with my oncologist on Monday, December 19. 

During my appointment with the radiation oncologist this afternoon, we found out that my most recent  MRI (done @ 2 1/2 weeks ago now) showed 8 brain tumors.  When I went to Detroit at the end of October/beginning of November, there was 6.  I'm still a bit confused on which are new, which are old ones that have grown, etc.  There are a couple of new ones that are fairly recent growths - one of which is in the pituatary area of your brain and the radiation oncologist indicates that this is fairly uncommon to have one grow there.  There also appears to be a new growth on the right part of my brain that had surgery performed.  He suggested that I decide whether I am willing to go through full brain radiation or whether I would like to go back through stereotactic radiation - stating the pros and cons of both.  My oncologist is also suggesting that I start that BRAF inhibitor so I believe I will be starting that after seeing her on Monday. 

I decided not to wait any longer.  It appears the stereotactic method of radiation is not working overall as I continue to have more and more tumors each time I have a MRI.  I think it is time to start full brain radiation and hope that full brain along with the BRAF chemo drug will work together to zap these and any new tumors!

They mapped out my radiation this afternoon and I will begin treatment on Thursday.  Radiation generally only takes 15 minutes each day and they usually only do 10 sessions.  I will see my oncologist on Monday and will update any new information after that appointment!

As hard as it gets, I still continue to believe!!!!

Thank you for your thoughts, prayers and concerns!

Love, Jodi