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...