Round 4: A mini class in radiation therapy

Yesterday started the next chemo round for Shayla. The meds were finally started at 11:30p.m. even though we checked in at the MSTI clinic at 1:00 and got to the hospital room at 3:30-ish!Shayla just didn't drink enough water the day before or yesterday to get her hydration level where it needed to be, so she had to have 3 bags of water (potassium chloride) given intravenously (well, via her port, anyway) before the chemo to start. We will be here until late Tuesday, maybe even Wednesday before the chemo will be done. :-(

Lots of Answers
I asked many questions of the doctors yesterday, and was given all the time needed to answer them without feeling rushed to get to the next patient. Dr. Hansen saw Shayla in clinic and spent an hour answering my questions with as much detail as I wanted. Now I know what the drugs she is taking do, or at least the goal of each med. Pretty interesting stuff.

I asked about the PET scan results and what a "complete lack of activity" means with regard to Ewing Sarcoma. Did you know: in order for a tumor to show up on a PET scan, it needs to be a certain size? (Dr. Chang informed me later last night that it needs to be at least 1 cm). PET scans cannot pick up microscopic tumor activity. But, what the scan does tell us is that any activity there may be left in Shayla's tumor is very small. That is why we must complete the chemo program. If we were to stop now, there could be unseen active tumor left to grow and spread until it was large enough to once again show on the PET scan. If that were to happen, it could become a tumor resistent to the treatment. No one wants that! I won't bore you with more of that discussion, but it was quite educational and useful.

Dr. Chang saw Shayla in the hospital last night at 7:00p.m. I had presumed she was already gone for the day. However, she spent an hour, as well, answering more of my questions specifically directed to her as Shayla's primary oncologist. Dr. Chang has seen and treated 'many, many' patients with Ewing and Rhabdomyo sarcoma, more of the latter. The difference with Shayla is where the tumor is located: in the sinus/face. This is what makes Shayla's case so unusual. So, from a chemo standpoint, the treatment is the same. It is the secondary or partnered treatment that needs careful consideration because of the tumor location. Do we go the radiation route? Surgery? Still not determined. We talked about that last night, too. The radiology oncologist's and neurosurgeon's opinions are necessary before a team decision can be made. Both options have possible side effects that could affect Shayla's long term quality of life, so we need to weigh all the information available as it pertains to Shayla's situation.

So what do we do now? Pray some more. We need to pray for the understanding and wisdom to know which is best for Shayla. There are not enough patients with Ewing sarcoma in the face to have lots of case studies out there. So, we 'go forward with faith' and pray the doctors will find all the information they need to make the best recommendations so we can make the best decision for Shayla.

Oh! We met Dr. Churney yesterday by chance at the MSTI clinic. I heard his name and remarked to Shayla that was who Dr. Beck was consulting with and he stopped and came back to talk with us. Very helpful doctor! He gave us more information and spent about 10-15 minutes talking about general considerations for Shayla, not having seen the most recent scans. I like him. I am glad Dr. Beck has him on our team!

Proton Therapy vs. IMRT
So many of Shayla's blog readers have been doing some great research and drilling of your own contacts, that the question of 'why is Proton Therapy being considered over IMRT ?' has come up more than once. So I asked Dr. Chang. Her explanation helps clarify the choice: IMRT uses multiple beams of radiation to treat the tumor. It provides very well-conformed parameters of the radiation beam for the highest dose of radiation, but the smaller, peripheral doses cannot be contained as well because of the multiple beams used. What I understand this to mean is like looking at a target. The bull's eye would have the greatest measure of radiation, but as you move further away from that bull's eye, the radiation spreads and is greater in amount than Proton therapy because it cannot be contained as well. This spreading effects the surrounding tissue and could cause more harm to healthy tissue.

In contrast, Proton Therapy uses one beam of radiation and the radiation particles don't spread through and around other tissue because the half-life is so much shorter. This is the one main reason Proton Therapy is considered the best option for Shayla because of the vital structures located so near the tumor (eyes, pituitary gland, smell sensors, etc. ) which we want to protect as much as possible.

Regarding location for this Proton Therapy: there are three major cities in the U.S. and I think 2 smaller, where this is currently available: Boston, MA; Houston, TX; and Loma Linda, CA. Boston has been the location discussed because the radiology oncologist Dr. Chang has been consulting with has had better, more detailed response from Boston than Loma Linda. However, no experience with Houston. If this is chosen for Shayla, we will go where she can have the best treatment. Loma Linda may need to be asked to look at Shayla's scans so they can give their opinion (it is closer!).

Whew! how's that for a bunch of information. Now, for your chemistry and radiology quiz, please take out a blank piece of paper.....