~Rich66~Update on Mom If You have A Moment - Page 4

Rich66 · 01-08-2009, 08:39 AM

Well..mom's gonna be living la vida hospital another night due to a 100 temp last night.
Regarding the scans, the onc seems to think the measurable growth could be a combination of an irreglarly shaped tumor "sliced" by the CT at a slightly different spot. I'm hoping he isn't confusing the notation on the 3mm spot with the measurable growth. Maybe I'll revist that tomorrow. Plan is to continue Xeloda but re-scan in 6 weeks, a shorter interval than usual. I'm getting a little whiff of "moving the goal posts" and said as much this morning. In our first consult, there was talk of a need for 50% tumor reduction in 6-8 weeks. That was 2nd week of October. The thought then was to get the liver to a better place with the potential of a more aggressive regimen that's harder on the liver. He did say Xeloda might be osmething that could be used for along time if it was effective. Although the 50% reuction seemed unrealistic to me, seems we aren't even close to that at 12 weeks. Onc now seems to think that because things are relatively stable with improving blood numbers(LFT, CA27) and minimal side effects, Xeloda should be continued in hopes of a later kicking in. Based on my concerns about a single biopsy site determining her2 status, I brought up the her2 serum test and he thought that might be a good idea a little later but said interpreting a negative result is difficult. I mentioned that a positive result would be something to work with and he agreed. So..I'm thinking, just do it now...but..everything is a waiting game it seems. And you all know how fun that is.
I think I have to remind myself how bad things were looking in early October. Important to push to better the situation but have to maintain a little perspective. I think mom is better at that because she feels better than then. I sometimes think about the issues both my parents (Dad in a nursing home) are dealing with and have to be thankful they aren't flipping out.
Ah well..I haven't gone into the spheres issue with the onc but there is a tentative consult on that next week. I hope to send them current scans today or tomorrow.
As always, feedback appreciated,
Rich

Believe51 · 02-04-2009, 01:52 PM

How is Mom feeling?? She has been on the old mind lately but I have been too consumed to ask. So when you get a moment please post an update. Prayers are said daily for this dear sweet woman and that amazing son of hers. Blessings friend>>Believe51

Rich66 · 02-05-2009, 08:31 PM

Mom is in the midst of restarting Xeloda after 1 week break due to some hand foot syndrome. She is taking B6 and applying henna and so far so good. Scheduled for scans next week. still considering a consult in Chicago for Sir spheres and/or LC beads.
Meanwhile...
I've been in a hospital overseeing my dad's care for over 2 weeks. He is on a ventilator for a second time, has had a number of close calls and had a couple procedures to stop urinary bleeding which revealed prostate tumor in his bladder. Still struggling to control the bleed. As I have mentioned elsewhere, Dad's Uro told him he would never have to deal with cancer due to lowered PSA from Lupron. That Uro is fired. Dad hasn't been well enough to even learn what's going on. It's all getting a bit much, folks.

WomanofSteel · 02-05-2009, 09:28 PM

I feel for you Rich. I take care of my 2 80something year old parents and am fighting this blasted disease myself. I know how tiring and overwhelming it can be. Try to take care of yourself and get any and all help you can. Trust me you can make yourself sick dealing with all this stuff. Hang in there guy!

schoolteacher · 02-06-2009, 05:39 AM

Rich,

My heart goes out to you and your family. I pray that you and your family recieve a blessing to alleviate some of the stress that you must be experiencing.

Amelia

chrisy · 02-06-2009, 09:23 AM

Rich, this must be nearly unbearable. My heart goes out to you, and prayers for your mom and dad and especially for you.

Much love
chris

Shobha · 02-06-2009, 11:27 AM

Rich, no advice since I am still new at all this but sending lots of prayers and positive thoughts for your Mom and you.

jones7676 · 02-06-2009, 06:36 PM

Wow, what you have been through....I hope that something works out for your mom. You are a wonderful son! I will continue to hope for something positive to happen.

Jackie07 · 02-06-2009, 11:00 PM

Be sure to take good care of yourself while taking care of your folks.

Rich66 · 02-07-2009, 03:41 PM

If anyone is up to speed on locally advanced prostate cancer treatment options, let me know. I'd appreciate a cheat sheet or shortcut. From what I've read so far, her2 exists in PC but Herceptin seems of no benefit. Tyrokinse inhibition might be helpful so it might still be useful to have pathology check her2 status. The onc in the hospital says he won't request the test.

02-09-2009, 04:30 AM

Rich ,
Have you heard of the Budwig Diet? Not too hard to follow and Im having good luck so far. Definately worth looking into!

Joy · 02-09-2009, 11:07 AM

that I hope you are finding some time to care for yourself as you are taking such great care of your parents. It is so heartwarming-all that you are doing. I just want you to know that we are out here sending you strength and hope for all that is going on with your family.

Rich66 · 03-21-2009, 02:33 PM

Latest scans show mets in liver and lungs almost unchanged on Xeloda. But...1 lung nodule has increased to a point to be considered progression. Using an article forwarded to me by Debbie L, I nudged the onc to get the her2 serum test in case mets other than the isolated liver biopsy might tip the scale towards Herceptin benefit. The onc at this point is suggesting single agent Navelbine, adding H if test suggests it. Any thoughts on Navelbine? For what it's worth, in the past this onc has referred to a "big treatment" protocol that they have had great results with but that mom's liver was too fragile to handle. Despite unchanged liver scans, her numbers are almost normal and she is symptomattically great, though still distended in abdomen. However, the onc didn't discuss the "big treatment" until I brought it up. I should have been more direct in asking why. He seems to be holding off on that due to the side effects involved. My concern is my understanding that each preceding treatment makes the next less potent. Is that considered the case?
How has Navelbine been for folks? Seems like it's usually paired with something.
I am still hoping to get mom a Sir spheres/LC beads consult, possibly an isolated hepatic perfusion consult too, if it's being done for MBC.
Please share your thoughts.

Joan M · 03-22-2009, 06:20 AM

Rich,

I'm glad your mom is doing and feeling better and that her oncologist is on top of the situation. If you're leaning toward spheres you should ask Eric because I believe Caryn had that procedure.

Hugs to you and your mom,

Joan

Believe51 · 03-23-2009, 12:51 PM

Here is some more prayers for Mom and you as you move forward. Funny how I was just thinking of her and the post popped back up. Tell Mommy I am sending more love and prayers her way. And Rich, for a son you are tops.>>Believe51

Rich66 · 03-23-2009, 07:28 PM

Thanks. Any thoughts on some of the particulars?
- Navelbine as monotherapy?
- Subsequent treatments producing less results?
- Believe51: any news on your Rexin-G contact?

vickie h · 03-23-2009, 07:45 PM

Hi Rich, I've been gone for a few days and just got home but wanted to send you love and any info I could. I don't know about Navelbine as a mono therapy, but I am on a second round (first one was over 2 years ago) of it along with herceptin and oral Cytoxan. It seems to be making a difference already (I've only had 2 weekly treatments). Navelbine seems to always do the trick, at least for an extended period of time. I wish I had more info for you. I also am trying to get all the info I can on Rexin-G along with RAD 001.
Sending you love and prayers, Vickie

Rich66 · 03-30-2009, 09:38 PM

Well..
Serum Her2 came back a bit above normal so mom starts Navelbine/Herceptin on 4/1. Any tips on what to expect side effects wise? I asked about baseline MUGA but they said not necessary since she has not had Adriamycin. I think she had a MUGA of 50 back in '05. Vickie, did your onc say how much benefit the cytoxan might add?

Rich66 · 04-01-2009, 10:49 AM

Well...brought mom and she is getting Herceptin..alone. Not what we discussed with Onc last visit but nurses say if H doesn't do the trick, Navelbine can be added. I'm a bit confused since prior to the serum test(which I asked for) she was considered her2 negative. But now with slightly elevated her2 serum results (14, <12.8=normal) the plan seems to be to bet everything on Herceptin. Granted, it can be changed in the future. But..doesn't this seem a bit strange? It wasn't that long ago her liver was in pretty bad shape function-wise.

StephN · 04-01-2009, 11:02 AM

Hey, Rich -
Well, this is what you have been fighting for. Look up TriciaK here. She is a little older and did well on Herceptin against her mets.

I wonder WHICH HER2 Serum test she had? The one I get (Elisa - enzyme linked immunoabsorbent assay) has 15 has the top end of normal. Test is performed by Laboratory Corporation of America.
Seems to be more than one such test??

I think it is a good plan to see how the Herceptin works, since it is easier on one's system. They can check markers and labs in a short time and get some info on how it is working.