Get ready....it's a long one!
We are back from yet another tiring two days of appointments in Little Rock. We met with Dr. Ross Thursday morning and again she had alot of information to throw our way. She pretty much went straight into Alan's radiation treatment plan. He will be doing radiation 5 days a week for 5 weeks. His particular therapy is called IMRT (Intensity Modulated Radiation Therapy). We did discuss with her the possibility of doing his treatment in Monroe. She did some calling around and felt good about what Monroe had to offer, but Alan and I discussed it a little more thru the day and we decided that all of his Drs. are working sooooo great together already in LR, so he is going to do the treatment in LR. This will also be good for Dr. appts, b/c we can usually scheduled them on the same day or at least the next day. We are nervous about Alan doing the radiation treatment b/c of the side effects. There is no straight shot to the spot of concern. They will have to go thru some of his intestines and stomach. Dr. Ross looked at going thru the back, but it's not going to work out.
The plan was for us to just be in LR on Thursday, but we ended up staying until Friday for Alan to have a PET and CT scan done on Friday. We have just learned to pack extra clothes b/c we usually end up having to stay an extra day for either an unscheduled Dr. appt. or more scans. Bringing up the PET scan, we should have the results back from that Wednesday or Thursday and from that they will tell how much radiation they need to use. The PET scan should also show just how "hot" that new growth is. Even if it shows up not real heated, we will still be doing the radiation. No, radiation has not been proven to help alot with Kidney Cancer (RCC) but it should at least help with the growing and spreading of the tumor. Going back to the "new growth".....we also found out from Dr. Ross that there have been at least 5 radiologist that have looked at Alan's previous scan and they have all said tumor. The reason they are saying this is b/c this new growth has blood vessels growing in it. If it was scar tissue, then it would not have a blood supply. Still, most of our Drs. just can't imagine it already growing back and the surgeon and urologist still say they got everything. No one is perfect. We all make mistakes. We also found out that during the surgery, they did have to remove the tumor in 2 sections b/c of it's size, and it looks to be where they had to detach it is where that "positive margin" area is and where the tumor is growing back. I have not looked at the scans to know for sure where it is growing back compared to the first tumor. I meant to ask to see them while we were with Dr. Ross, but I never did. This new growth is about 2cm in size.
Something else we found out was Alan's cancer is a Clear Cell Cancer. This is a more aggressive type of cancer, which also plays a factor in to why it could already be growing back and why we defiantly need to get started with treatment. Alan will also be taking an oral drug called Sutent. We are not sure if this will be with the radiation or after.
How is Alan doing you ask, he is doing pretty good and his spirits are good. He is still sore and actually seems to be alot more lately. I'm sure he is trying to do too much. He is putting on some weight, so that is good. He had a large knot come up where he had that PIC line in. Dr. Beck looked at it Thursday and said it was an infection, so he takes a strong antibiotic immediately (remember, no spleen!). We keep antibiotics with us at all times.
Please continue to pray for our family. These next 5 weeks or so and going to be difficult. I will not be able to be with Alan much and he will be away from his family. I still have to work when I can and need to be with our kids. It's still so hard to believe all of this and I know that there are so many of you have have gone through troublesome times such as this. I always tell myself it could be worse. It could be one of our kids, Alan could have cancer all over his body...there is always something. Heather, I look at Brady all of the time and can't imagine what all you guys have gone through. Man, what a fighter!! Again, I've probably forgotten some information, but my brain just does not work like it used to. I've been doing some crazy things lately!
We love you all and thank you for your prayers!!
God is Great!!
2 comments:
Melissa & Alan
You don't know me but I've been reading your blog off and on for a couple of months. I ran across it when I googled "positive margins". I had bilateral clear cell kidney cancer dx in January and two partial nephs (in March & April) to remove a tumor from each kidney.
I'm posting now because I thought you might be interested in joining a group called ACOR, Assoc. of Cancer Online Resources. This group is made up of patients and caregivers just like us...dealing with the dx, treatment and options for all kinds of kidney cancer (as well as many other cancers). Go to www.acor.org for signing up. No question is too large or too small for this group and you'll get non-expert opinions, suggestions and support from those who have "been there, done that". I seldom post to this site but I read it daily. I wish you the best of luck and many prayers in your journey.
Kindest regards, Connie
Dearest Melissa and Alan,
Melissa, I am so sorry for getting so upset Saturday, I know that is the last thing you needed. It's just that I haven't seen you in person, I have just been keeping up through here and like I said after talking to Alan and me just not getting it that it was cancer, I was just in shock. And we love you guys so...much that it hurts all of us to see what you guys are going through. On the other note, we have an awesome God, our healer-Jehovah Rapha (Exodus 15:26). We know that there is nothing he can't do. All we have to do is pray. We will continue to lift you up in prayer.
Love and prayers,
Susan
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