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Good and Not So Good Results


stand4hope

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We got my husband's results today. The good news is the CT of chest, abdomen and pelvic area were stable. There was mention of the "persistent extensive bony metastic disease" and "radiation fibrosis". The pericardial effusion is still "moderate" and "unchanged" (PHEW!). Blood work was great!

The bad news is there are two new mets in the brain on the left side. It doesn't say how large they are. There is also reference to some blood flow issues in the carotid and vertebebral arteries, and hemorrhage within the largest met that was already there on the right side. We don't know what the blood issues mean - if anything. The onc wouldn't discuss those results because the brain issues are referred to one or both of the other two oncologists on our team (radiation oncologist and Novalis oncologist). It's just not his area of expertise, I guess.

We don't have a plan yet. We are supposed to meet with one or both of the radiation oncs next week, but won't get an appointment day/time until Monday.

If you have any input on any of these findings, I'm all ears. I'm also going to post on Ask the Experts with a little more detail to see what some of these things mean, especially the blood issues.

I'm doing ok. I really am. Hubby's been pretty quiet, so I'm not sure what he's feeling, at least not yet.

Thank you for your prayers! You have no idea how much I appreciate knowing that so many people are praying for my husband.

Love to all,

Peggy

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Peggy,I can't offer info (I'm totally unknowing on this).I do want to wish both of you the best as you meet with the drs.I am sure he can handle what ever comes along in the way of treatment.Tell him I'm behind him along with all the others here.(if he is open to our support yet.)If he isn't then you know that he has it anyway.

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Peggy,

I've been thinking about you all day long. I'm sorry for the "not so good" news, but happy about the good news. Please let me know if there is anything you need, besides the prayers. I'm always sending those for you!

Love to you!

ps...did you make it to the office Holiday gathering? If so, I hope you enjoyed yourself.

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Well, I don't know, much as to your questions. But I do know I have been thinking of you both all day long and I am relieved to hear from you.

Did I ever tell you I hate cancer? Well, I most certainly do. How can it be that a person has brain mets, bone mets etc and has so few symptoms?

Of course I am GLAD your husband seems to be mostly asymptomatic, but you must admit that IT IS scary to know that that mets can be and often are silent.

Go tell my Dr. Skinny that, since I don't know where she leared anything. She must have missed a lot of days of med school.

I think fibrous tissue is kind of normal following radiation--I think it's a kind of thickening of the lung due to inflammation from the nukes.

I think it is often insidious, so it can occur some time after radiation has stopped.

Geez, I sure learned more on this board than I ever wanted to... And I may not be right, so......

I pray for wisdom for your husband's Drs and strength for the both of you. And also some happy holidays.

love and fortitude

elaine

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Peggy,

I can't tell you how sorry I am to hear of your husband's latest news. What I can tell you is what they told me. After WBR they CAN do stereotactic radiation, or gamma knife if there are only 1 or 2 tumors to "target". Hopefully, your radiation onc. will be talking to you about this option. They can't do WBR again, it's a one shot deal, which I'm sure you already know.

I will be anxious to hear what course of action you and your husband decide to take. I'll be having another MRI on Jan. 3rd, and will get the results on Jan. 5th.

Please know that you both are in my prayers.

TAnn

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Peggy,

What a thing to learn right before the holidays. I hope the doc's understand that it is impossible for you to wait til after the holidays for an answer to your questions. I wish you the best of luck with all of this and pray that your docs have the answers and want to act quickly.

Nina

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Dunno how I missed this, Peg....but just wanted to say that I am thinking of you both...and hope when you get further news from the docs that it all will include a good game plan. We all always want a perfect report....only good news.....and too often don't get that, but rather some variation or mixed news. :(

Hang in there, dear Peggy....and know you've got lots of wishes and prayers headed your way. Hoping that after you get all the docs' input, that things will look more positive.

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Thank you, my friends. I appreciate your support and prayers so much. We are doing fine - very optimistic and he's ready to be aggressive once again.

We had a great talk last night and he now knows some things about his disease that he really didn't know before. His doctors are great, very competent and very aggressive, but they have never talked to him about his stage, how "advanced" his disease is, the battle that was ahead or anything. He knows now, because I finally got up the nerve to tell him.

Through a shaking, quivering voice, I told him what the onc has said to me in private, and what I've learned here. I told him EVERYTHING. At first he was pretty ticked off (not at me, but it really was a shock), but within 15-20 minutes he declared in a loud voice that his disease might not get cured, but "I, BY GOD, am going to be the longest *@%$^& survivor alive." I let out with a loud cheer and was thrilled to hear that! Of course, he's been like that since day 1, so I really wouldn't have expected anything less.

He did say that, even though he didn't know those things, he kind of suspected it.

We're anxious to hear something tomorrow about the next steps. I think getting that out in the open has to have been the most stress-reducing thing that has happened in our house for a long time. No more secrets. After 37 years, we've never had very many secrets from each other, and this one haunted me day and night. I don't think anyone could ever understand the great relief that I am feeling. I'm ready to celebrate the holidays, go buy a ton of food and sing Christmas songs.

I'll keep you posted next week whenever we know what the plan is.

Love to all,

Peggy

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Yes Peggy I do understand the relief you are feeling. I felt exactly the same relief for almost exactly the same reasons after I had taken the courage to "come clean".. It was so hard to keep those secrets as nothing had ever been secret between us before...well, before he had the stroke that is. I hadn't had to discuss my man with any " acute rehab" or "oncolgy" staff before then either, and I felt I was betraying him or talking behind his back. Wishing you both strength, I'm thinking of you and your family all the time. Paddy

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Dear Peggy,

I am so sorry I didn't post earlier - down in the dumps myself and not good with anything but good news right now.

Did the drs. mention Temodar. It is chemo that crosses the blood brain barrier. Getting a lot of press lately (maybe I hear so much because I know about the drug now).

The good news is that your sweetie feels well and keeps on going. They are important good signs.

Things will feel better when you get the plan from the drs.

Will your son be home for Christmas? I hope so. It will be good to have your whole family together.

Stay the course dear. It is the season of miracles.

Love,

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Ginny,

The doctor didn't mention Temodar, but I did. I knew that Earl had taken it and I knew that it crossed the blood brain barrier. Again, he said that might be an option but wanted to defer anything that had to do with the brain results to the onc we will see next week.

We think they might recommend stereotactic radiosurgery again (Novalis) to the two new mets, but I don't know if they can or will treat the others that are still there since they got WBR and Novalis already.

Dr. Joe put our minds at ease today about all the other things that were in the report, so I'm guessing ahead of time that our choices will be Novalis or Temodar or both. After the 2nd onc reviews all the films, etc. and talks to the primary onc, we are also expecting them to switch him to Tarceva or maybe even Alimta. I don't know if he can take Temodar along with the other two, so I guess we'll just have to wait and see.

No, our son is not coming home for Christmas, but that's ok. Hubby flew out and had a 2-day visit with him on the 10th and he's only been gone just over a month, so it's not wise for him to come home so soon. He's having incredible homesick issues. He has a lot of friends here and adjusting out there has been tough for him, but this he must do.

Frankly, this time that hubby and I have had with just the two of us has been wonderful and we really just need for it to be the two of us for now. We will be spending Christmas Eve with my family and Christmas Day with hubby's family, and Mike has been invited to three different homes in Arizona, so he will be ok. He landed an incredible job with a large company and he starts tomorrow. He is very excited and that will help him get through Christmas.

Merry Christmas, Ginny, and I hope and pray that you are surrounded with lots of love and laughter this holiday season. That will help a lot.

Love,

Peggy

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