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-   -   Hail Mary Pass - dropped the ball (https://her2support.org/vbulletin/showthread.php?t=53329)

CoolBreeze 03-01-2012 05:50 PM

Hail Mary Pass - dropped the ball
 
I had scans a week ago and apparently, something is growing on my liver, where I had the ablation.

For newbies, back in October I had the left lobe of my liver removed and a spot of cancer ablated in the right lobe that was too deep to resect.

I guess they didn't get it all. The spot in the right lobe appears to be back.

So, here I am with no treatment plan. I got a terrible case of c-diff at the end of November and spent time in the hospital with that - I went septic and nearly lost my colon. My colon is still recovering but not 100%. So, they aren't giving me chemo and now the cancer is growing back. I am on herceptin but apparently it isn't doing much for me.

I am going to have a PET to be sure but I don't think it's possible that it's anything else. I would love to hear that they would ablate it or radiate it again, but I also can't take antibiotics because of c-diff so not sure how they'll manage.

It makes me really sad that I did such a big surgery and didn't get anything from it. It was my hail mary pass so I don't regret it but I wish I'd been one of those who had a liver resection and got years.

I'm not on a hormonal - tamox didn't work for me. My doctor is considering putting me on letrozole but I'm weakly ER+ and he says sometimes those AIs can stimulate the ovaries in women who are just barely into menopause, as I was. But, we need to do something, yes?

Just thought I'd update you all.

Rich66 03-01-2012 06:00 PM

Re: Hail Mary Pass - dropped the ball
 
"sometimes those AIs can stimulate the ovaries" They could probably monitor circulating markers for estrogen/estradiol. maybe Faslodex would be a better option..or even with an AI.
It seems possible SIR therapy (beads) might be of use on the liver. Not sure if they do that with one lobe though. Also TACE.

Maybe Herceptin + Tykerb + endocrine options above? Shouldn't be hard on immune system.

chrisy 03-01-2012 06:04 PM

Re: Hail Mary Pass - dropped the ball
 
Oh, sad can't even describe it I'll bet. Don't give up on the long term success - it could still happen. The complication of not being able to take antibiotics is a problem, but maybe they could do a targeted radiation - like cyberknife - to do the "cleanup" which might not require antibiotics.

Systemically, you might ask about adding tykerb to the herceptin; sometimes the combination can work even if the single agent doesn't.

Try to keep your chin up, you've worked so hard to get to this point. Don't give up.
Chris

BonnieR 03-01-2012 06:20 PM

Re: Hail Mary Pass - dropped the ball
 
"But, we need to do something, yes?"...YES!! I am afraid I dont have the knowledge to make specific suggestions. But I wanted to say I share your disappointment and feel your sadness. Time for a new game plan, to use the sports analogy. From the replies you have already received, it sounds like some options may be available that have not been tried yet. Meanwhile, I will give my standard sign-out, Keep the faith. Always.

Pray 03-01-2012 06:22 PM

Re: Hail Mary Pass - dropped the ball
 
Ann, I am so sorry! I wish I could offer you great advise. Please know that you are in my prayers. You truly amaze me with your fighting spirit. Gods blessings to you and your family.

CoolBreeze 03-01-2012 06:31 PM

Re: Hail Mary Pass - dropped the ball
 
My oncologist has not recommended anything, which surprises me. He's pretty forward thinking but I came up with the AI idea. He said maybe he'd put me back on Navelbine as it's the easiest to take but he wasn't definitive about it. I wish he'd brainstormed more ideas but maybe he wants to wait for the PET to be 100% sure. I hadn't thought of tykerb, duh.

ElaineM 03-01-2012 08:44 PM

Re: Hail Mary Pass - dropped the ball
 
Wow !! I am sorry to hear something is growing in your liver. I am glad Chrisy responded. Maybe some other folks with "liver" experience will respond since i don't know anything about liver mets. Meanwhile adding Tykerb might be a good idea if the AIs are not an option.
I think if I were in your situtation I will eat plenty of foods that are good for the liver while the docs decide what to do. Kale, beets, broccoli, onions and garlic are some that come to mind. I would ask if I could take milk thistle which is also good for the liver.
I hope a solution is just around the corner. Take good care of yourself and hang in there.

chemteach 03-01-2012 09:55 PM

Re: Hail Mary Pass - dropped the ball
 
I'm sorry to hear there's something on your liver. I don't know enough about those treatments mentioned to suggest anything at all. You've been through a lot, more than most, I think. Keep going, keep looking and asking and thinking of treatment options. It sounds like you have some great people on your side. Thoughts and prayers are with you.

michka 03-02-2012 12:20 AM

Re: Hail Mary Pass - dropped the ball
 
Ann, I am so sorry to read your post. First I hope that the Pet will not confirm the scan. Sometimes it can take months for the liver to recover from surgery and I had traces on the pets and MRIs from the operation that disappeared slowly. If you cannot have chemo and you only have one spot can they go after it with RFA? Because if it is the same spot and if you have no new one it means they didn't get everything out the first time but not that the cancer is spreading so your strategy may still be very good. Thinking of you Ann. Hugs. Michka

Rich66 03-02-2012 12:26 AM

Re: Hail Mary Pass - dropped the ball
 
ttp://her2support.org/vbulletin/showthread.php?p=221053#post221053

StephN 03-02-2012 12:35 AM

Re: Hail Mary Pass - dropped the ball
 
Hello Ann -
I was about to write what Michka said, as I recalled that she had some doubtful scans and then things began to shrink and look better.

Perhaps this is the same thing that can often happen in the brain after radio therapy of some kind. There will still be some flair or what looks like a lesion. I will be surprised if it truly is the tumor coming back at this point.

It is hard to be patient in these situations to wait and see, especially if you are only getting Herceptin, which I am sure IS helping against further progression. When you don't have other spots to measure, the good news is that they are NOT there.

Take care of the c.diff. and hopefully that can happen soon.

NEDenise 03-02-2012 06:02 AM

Re: Hail Mary Pass - dropped the ball
 
Oh, Ann,
I'm so sorry you've gotten such disappointing news. I'll be thinking of you and hoping for good news, and an effective treatment plan in your very near future.
Hugs,
Denise

caya 03-02-2012 07:25 AM

Re: Hail Mary Pass - dropped the ball
 
Ann, I'm sorry for your disappointing news, but still cheering you on, as I'm sure we all are.

I see you've had some good advice already, hopefully more will be posted soon.

all the best
caya

Debbie L. 03-02-2012 08:59 AM

Re: Hail Mary Pass - dropped the ball
 
Ann, I'm sorry to hear your news, and I send lots of good thoughts. Maybe we could call it just a fumble at this point? No one knows the future, as others have said so well already.

Just a thought -- since the dang C-diff damage is what's limiting your options right now -- is there any possibility that hyperbaric O2 treatments would help the colon heal more quickly? I don't know much about this but I keep hearing about it for tissue healing in general. I do get some google hits, talking about hyperbaric O2 for radiation-induced colitis so it does seem it might be effective deep inside.

Lapatinib is not easy on the gut for most -- something else to consider.

After the PET, regardless of whether your onc has formulated a plan or not, could be a good time for a 2nd opinion.

I know you'll keep us posted. Lots of good thoughts to you. How are you feeling (in any way that you care to answer that questions -- physically and/or emotionally)?

Love,
Debbie Laxague

Rich66 03-02-2012 12:05 PM

Re: Hail Mary Pass - dropped the ball
 
Good points above about possible necrosis as opposed to new growth.

what do you mean by colon recovering? Digestive function? Would probiotics (florastor) help?

rhondalea 03-02-2012 12:10 PM

Re: Hail Mary Pass - dropped the ball
 
I have no useful input, but please know that I'm thinking of you and hoping that it's just a residual effect (scar tissue, maybe?) of the ablation.

Mtngrl 03-02-2012 02:50 PM

Re: Hail Mary Pass - dropped the ball
 
Ann,

I'm so sorry. After all you've been through that must be just devastating.

Sending positive energy. . . .

chekmark 03-02-2012 03:58 PM

Re: Hail Mary Pass - dropped the ball
 
Ann,
It saddens me to read your post. Are they sure it is what it is? Maybe its scar tissue since you just recently had your surgery. It is so disappointing when we put every ounce of our being into treatment, put our bodies thru chemo and the everlasting effects only to find out that it did not work. I saw my oncologist yesterday and she was telling me about so many improvements in research and makes things sound so promising and then I read your post. I pray that you continue to stay positive through out this. I know how difficult that is. I am at a loss for words and cannot even imagine how you are feeling right now but like the others have said, you have been thru so much and except for the c-diff have done pretty well. One day at a time. I have no advise and I wish I did since I really am uneducated in the liver and I am still trying to figure out this whole her2 thing. We may never have the answers that we want but you always have everyone here for all the support you could possibly need. We are cheering for you and hope that the next news will be good news. Prayers and more prayers to you and all on this site. I wish I could I say the right thing to make it all better. Please keep us posted.
Blessings, Darlene

bejuce 03-02-2012 04:12 PM

Re: Hail Mary Pass - dropped the ball
 
Can they biopsy the area to determine if it's indeed a cancerous growth? Hope it's just scar tissue or necrosis as mentioned above. Either way, hoping for a successful resolution soon.

Hugs,

Marcia

Jackie07 03-02-2012 09:10 PM

Re: Hail Mary Pass - dropped the ball
 
Ann,

Your doctor will figure out a good approach soon. Hang in there. We are all rooting for you.


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