what to do......

B and I had our much anticipated follow up appointment with Dr. #4 on Wednesday. This was the appointment where we were to find out the best course of treatment...Tarceva or Chemo. And we even were expecting to begin it Wednesday, too. So we thought. Where we left off last week was that Dr. #4 was going to work on getting the sample from the hip biopsy sent off for the genetic testing to determine if B is a good candidate for Tarceva. What we ended up finding out was that the sample from the hip biopsy could not be used for the genetic test. Dr. # 4 explained that the sample was decalcified, meaning it was stripped of all the tissue they were trying to read. Therefore, it was completely useless, so to speak, for the genetic testing. Both B and I were sitting there with our eyes glued to the Dr's glasses wondering what this means. What's next?

This was probably the most-informative visit we've had to date. Dr. #4 explained that at this point we have several options and that B and I are going to have to spend the weekend talking over some things. Without further ado, the treatment nominees are:



Option Numero Uno
We can opt to have the tumor in B's lung removed. It is the hope of the team that the lung tumor will yield enough sample to be used in the genetic test. However, B, would have to undergo a medium surgery that would result in a 3-4 day hospitalization. There is also a risk that they could collapse his lung...again...been there done that, and that he could get an infection. Same risks as any surgery. It'd be general anesthesia, so those risks exist. However, with B's age and health, Dr. #4 is confident those risks would be reduced. The surgery is called a 'Wedge Resection.'

The Dr. also said that because the tumor is mostly cystic and, for lack of a better word, strange, there is a risk that the tumor may not give enough sample tissue for testing, and all of this would be done for nothing (except the peace of mind that there is no tumor in the lung). On top of that, there is also a risk/chance that B will not have the genetic mutation and that would rule him out of the Tarceva option, meaning chemo would be the treatment plan (about 50% of non-smokers have the mutation - of course, had to be 50/50, right?!). Also, with surgery we would not be able to start treatment for up to 6 addition weeks - scheduling, consult, recovery time, etc....

On the positive side, if things go well and the surgeon does get enough tissue sample, we will have a better read on what we are dealing with and may be able to receive a treatment option that is pin-point accurate for his cancer (either Tarceva or a specific Chemo regimen for a specific type of cancer). We will also be able to know for sure whether or not the lung is the source of the tumor.

Option Numero Dos
We opt out of the surgery and start chemo as early as next week. The chemo is more abrasive then the Tarceva, and it would be a more general chemo since they are not completely certain that the lung is the source cancer. The team would hope that the chemo would work to shrink the tumor and they would check in on B's response to the chemo every couple months.

With B having hardly any symptoms, the only way to gauge progress is to do a CT scan and check to make sure the cancer is not spreading and that the tumor is shrinking. However, there is no way to know that the Tarceva would have been a better option since they would not run the genetic mutation test. Again, the Dr's have said that about 50% of non smokers have the mutation and that if you have the mutation, Tarcava is best. But, if you don't have the mutation, chemo is best. And they wouldn't give B the Tarceva without knowing for sure he has the mutation.

Option Numero Tres
We opt to start chemo next week and then see how B does. God forbid, just as the Dr said, we could always do a biopsy later down the road, IF more tumors surface, to run the genetic mutation test. If that does happen, and we find out at that time that B does have the mutation we would then switch over to Tarcava. However, if we do start chemo, and another tumor does show up, we would have to stop chemo treatment for 3 weeks before having any operation. This is because one of the chemo drugs causes blood vessel growth and this could cause serious surgery complications.

Essentially, the question is do we have surgery and hope there is enough tissue, or do we start chemo and hope that works and nothing else pops up and the existing tumor shrinks. Obviously, each side has its pros and cons.

Auntie R has been helping us with this HUGE decision since there are a ton of things to weigh. We just want to make sure that we are doing the right thing. She has talked with the Dr. from U of M and he recommends that we just start the chemo. He does not seem to think it will benefit B to have the surgery, since it is a medium surgery. Dr. # 4 is leaning more towards removing the tumor. He feels that B will recover just fine and that we may find out more info.

Auntie R also has a call into a friend who used to work at Cleveland Clinic and we are hoping to get another opinion and more info. She doesn't think that we can make a bad decision and that it might help B mentally to have that tumor out of the lung. The down side of that, is if he has the surgery for nothing it might make him feel worse, since we would then have delayed any treatment for 6 weeks with an end result being chemo, which was an option right from the start.

Can anyone else say awwwww.......What the heck, goodness gracious, holy crap, good gravy. We both felt hopeful, but my goodness. I guess we both never thought that we would have to make such an important decision this soon into our married life. I guess I figured we would be having conversations about stating a family or our next vacation, but these decisions seem like nothing compared to making a selection about B's treatment.

B is feeling better, and this week he was able to lift his leg for a few seconds without the aid of his hand...can you say progress! We slept in the bed all week, and his neck is getting better. Also, he started his phosphonate treatment, which is used to help in strengthening the bone in his hip. In the long run, this will be well worth the 30 minute IV drip. Today and yesterday, though...not so much! The side effects of getting this treatment cause bone pain. Sometimes severe, sometimes mild. Based on B's facial expressions, moans and groans, and overall pain last night...I'd say his was more on the severe side! Wherever there's a lot of bone marrow, there's a risk of the pain. So yesterday B started having chest pains, which was scary, but we then realized (and the nurse explained) this is the side effect kicking in. Hopefully it runs its course in the next day or so.

This phosphonate treatment goes once every 3 weeks for the entire course of B's additional treatment. There are additional things to add, which I will do in a follow up post, but these mini hands are getting tired from typing. We are hanging in there, and I know in my heart we will make the right decision. Stay tuned for more info.

Thanks again for stopping in for the update, and enjoy the Madness! We're trying to. Go Green. Go White. Go State!