Two months in...

Hello and welcome back...it's been awhile.

Cleve is currently in L.A. waiting to come back home tonight, thank goodness, I don't sleep very well when he's gone, I don't know how many times I woke up last night. Yesterday Cleve had his scans done, an MRI and PET scan, and he met with Dr. Hamid this afternoon. The results of the scans were not exactly what we were hoping for unfortunately.

The PET scan showed that the tumor has shrunk but only by a few centimeters, it currently is just under 5 centimeters. At the last appointment, both Cleve and his doctor could not feel the tumor, but now, again it is palpable and it aches when Cleve is overly active. Did it shrink and then come back again? We aren't sure but this is what we are thinking happened. The MRI showed that the tumor in Cleve's sacrum is getting bigger as well, although Cleve is not feeling any pain. We are assuming, and what it looks like on the film, is that the tumor is maybe eating away at the bone and not causing any swelling around the nerves, hence the lack of pain. But we don't have a very clear idea of what is actually happening back there. We were hoping for a better result from the medication, it's hard not to feel a little disappointed. So, where do we go from here?

For right now, the plan is to remove what is left of the tumor from the axillary region. Portland actually has a TIL therapy program, which is a banking of the tumor for future use. So it looks like we will be traveling to Portland to have the tumor removed, return home, begin radiation treatment on his sacrum and introduce a new medication called ipilumimab. There is one little snag though. Because of the medication he is currently on, his liver functions have decreased. In order to add the the ipi. medication into the mix his liver has to be functioning properly. Cleve will be going off his meds. for two days to give his liver a chance to recover. Dr. Hamid will then lower the dose of his meds. and see how his liver reacts. Once his liver is stable we can add in the ipi. We can do all this while we remove the tumor from his under arm and hopefully not waste any time in between.

My question was why are we keeping him on a medication that has thus far shown us mediocre results? Cleve said the theory that we are working on is that its shrinking the tumor slightly, but also restricting the growth in other locations. Ok, I can handle that, plus we are adding another medication. But in the case that this doesn't work, Cleve said that Dr. Hamid has several other options he's waiting to implement, in fact, the ipilumimab was an option that he was hoping he wouldn't have to use yet, but here we are. At least we have options.

I want to give a big thank you to David and Jim for escorting my husband to L.A. for this appointment. I would have loved to have been there by his side, but i couldn't ask for better replacements. Thanks guys. Also, another very important person who has been an amazing friend will be doing surgery on my sister to replace her hip (at age 36). Thank you to Yaser for taking care of my sister this friday. Extra prayers and positive thoughts would be appreciated for her as well.

I will keep all of you posted as to any changes, like i said, this is what we have planned at this time. Things could and may change at a moments notice. Until next time...

Round Two!

As I promised, Pictures of the sunburn on Cleve's legs and the blistering that occurred.

Cleve traveled down to L.A. this last wednesday to get his second round of medication. It was just a day trip since there were no scans scheduled. Dr. Hamid was pleased with Cleve's progress and a little disgusted by the looks of Cleve's legs. They took photos for documentation for the trial. Another little bit of news is that according to Dr. Hamid the drug will be going public in the next ten to fourteen days. This is both good news and bad news. Its good news because the medication works and now people can have access to it who otherwise could not. This is breakthrough stuff here folks.
Its bad news because once it goes public the study is closed and we are no longer a part of it. This means that Cleve will not receive the benefits of being a part of the study anymore. Once the study ends Cleve is able to have one more round of medication, then we pay for it which is about $120,000 a year. Insurance does cover a portion of it but it is still an amazing expense for a brand new medication. So, before all this happens Cleve is scheduled to go down to L.A. one more time to have a PET scan and an MRI covered under the study. At this time, we will see what size the tumors are, if they are still there, where they are at and he will be re-staged depending on the results. If there is any tumor left under his arm we will more than likely head down to MD Anderson in Houston again to have it resected and kept for future possible treatments made from the tumor (possible vaccines), and then we will more than likely radiate his sacrum to inhibit any melanoma cells growing and dividing there.
Dr. Hamid also expressed a desire for Cleve to still be an active patient of his. This means we will still go down to L.A., just not on a monthly basis. Just enough for the brilliant Dr. Hamid to keep an eye on him. He would like to do this because when eventually the medication stops working (this is the nature of the medication) The cancer cells will return rapidly and Dr. Hamid is keeping his eye on upcoming studies for Cleve's particular situation. This way we can act quickly instead taking another two months like we did last time looking for a place of treatment. We love this idea! In the mean time Cleve will continue seeing his wonderful oncologist here in Medford, Dr. Poisson. We are so lucky to have such wonderful doctors taking care of Cleve.
It is so nice to have some good news for once, especially with all of the heartache cancer is causing to families everywhere, especially little Faith Fulmer and Ethan Jostad here in Medford. These are two children who are victims of this evil disease, and unfortunately their battles are not going as well. They have become the face of childhood cancer here in Medford. They are incredibly strong children who have put up a heck of a fight and continue to do so. They are little miracle angels, and it is not fair for cancer to affect children. These are just two cases of childhood cancer but there are so many more that are not publicized. Im sure every person out there has been affected by cancer in some way, either directly or through family members and it is devastating. So next time you see one of those buckets from the american cancer society, or a store asks you to donate your change to the children's miracle network, please help out and donate so we can find a cure for this horrible disease that takes the lives of our loved ones. We need research, and the researchers need money to conduct their studies. Please help out in any way you can, even if you are donating your time, you are helping more people than you can imagine. I am including the links on facebook to the pages of Faith Fulmer and Ethan Jostad. Check them out and see just how incredibly brave these little ones are.
http://www.facebook.com/pages/Team-Ethan-Jostad/138676326210436
http://www.facebook.com/pages/Faiths-Friends/120764287940176
If I have somehow copied and pasted wrong and you cant get to the pages just go to my page and you can find the links there from my info page.