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.

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.

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

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.

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.

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.

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.

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.

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

Re: Hail Mary Pass - dropped the ball
 

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.

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

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

Re: Hail Mary Pass - dropped the ball
 

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?

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.

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. . . .

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

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

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.

Re: Hail Mary Pass - dropped the ball
 

I don't believe it is scar tissue as it has gotten larger from one scan to the other. The radiology report said it appeared similar to my 8/8/11 scan - the one where they were looking at cancer prior to surgery.

I am too far into this stuff to guess, but in reading the radiology report, it isn't looking good. However, it's not definitive, just likely.

I hadn't turned it positive in my mind until just now - I do have one spot on my liver - but only one. Where they missed some cells. There is nothing in my bones, lungs or pelvis that they can see. So, that's positive.

I've been on florastor and culturelle since I was too sick to walk with c-diff. I am getting improvement but my colon is still abnormal, slightly swollen with ileus. No blockage though.

I don't have any colon symptoms though and am normal bowel-wise. I take that to be a good sign.

I have a PET on Monday. We'll see.

Re: Hail Mary Pass - dropped the ball
 

So happy that you are looking at the positives and hopefully you will be well enough soon that they can zap that one little bugger soon and it sounds like you are mending well. God Bless you. Darlene

Re: Hail Mary Pass - dropped the ball
 

I'm curious about what ended up with your work situation. I hope your school came through for you, and you get to go back. Of course, this is now a different challenge. I wish you all the best.

Re: Hail Mary Pass - dropped the ball
 

I've been back to work for a week. They are allowing me to work half days, 11:30 to 3:30, with my sub working the first half. As I gain strength, I planned to go back to full time.

Now though, I don't know. I think maybe I'll keep it at half days until school is out and resign. If it's back this fast than maybe that's the best course. I honestly don't know.

Re: Hail Mary Pass - dropped the ball
 

Your health is the most important thing Ann, as I'm sure you know. Take it easy, see how it all goes.

all the best
caya

Re: Hail Mary Pass - dropped the ball
 

Hang in there, Ann.

Re: Hail Mary Pass - dropped the ball
 

Ann I dont have any good advice for you sadly but do wish you well in whatever way you choose to treat this and sorry you're battling again!

Re: Hail Mary Pass - dropped the ball
 

HI Ann
Sorry to hear about the poopy scan - hoping you get an unexpected good result.
Amanda x

Re: Hail Mary Pass - dropped the ball
 

Hi CoolBreeze

Is this trial re permuzutab as well as Herceptin of interest?

http://www.sabcs.org/PressReleases/D...ts/Baselga.pdf

Best wishes and hugs

Lulu

Re: Hail Mary Pass - dropped the ball
 

I am so inspired by your great fighting spirit! I have followed you for a long time now and you always amaze me. I look forward to hearing your posts. You are in my prayers.

Re: Hail Mary Pass - dropped the ball
 

Ann, thinking of you today during your Pet. Michka

Re: Hail Mary Pass - dropped the ball
 

Hi Ann,

That Stinks! Let's hope it's just necrosis and perhaps your doc is not throwing around suggestions because a) it might be necrosis or something other than cancer on your liver and b) s/he wants to be extra careful about balancing the pro's and cons of any new treatment.

I was thinking of Fulvestrant too. If you are worried about you ovaries coming back from their holiday, you could try Zoladex or Lupron shots to cool them down.

It takes a while for the gut to heal, so Hyperbaric O2, probiotics and perhaps a glutenfree diet could help. Even if you can't have chemo now, it could mean that you get that option later when things have healed more. It's a balancing act and I agree that it would be a good idea to get a second opinion. You may also ask your various docs to sit down together and come up with a plan. That's what my Dad does; he has diabetes and heart issues. He just gets his internist and cardiologist to sit in the same room and discuss his options.

Hope the PET scan shows there is no need for any chemo in the forseeable future.

Hugs

Jacqueline

Re: Hail Mary Pass - dropped the ball
 

Ann,

Sending some good vibes and as some have suggested add tykerb to the mix is a good option..I guess can be a bit hard on the colon (diarhea) but dose can be adjusted. I really hope that it is a scar you are seeing but if not ablation is I hope still an option you may need to push for.

love and hopes

Re: Hail Mary Pass - dropped the ball
 

Although the contracting C-Diff has been a horrible nightmare, I concur with your statement about being glad you had the liver resection. I too had a resection which revealed hidden nodes and the return of cancer within 3 months. I don't regret having the procedure at all.

Although another invasive procedure sounds like it might be too much, I did want to share that prior to the liver resection I had 2 cryosurgery procedures. I would compare it to having a root canal. The good news is, it beat back the tumor immediately. There is some supposition that it also generates a natural immune response.

You may want to discuss cryosurgery/RFA/Cyberknife as non chemical options.

After this next scan, we will see the results and I may consider having a 3rd round of cryosurgery.

Just another, non-chemo option.

Sigh!!! Hoping you find peace and a boost of strength.

Lori

Re: Hail Mary Pass - dropped the ball
 

Are you taking a quality probiotic? My GI tract really took a beating during chemo and ever since I must remain on a probiotic. It is important to use a refrigerated powder probiotic. Use a quarter tsp 3 times per day and you should see your bowel restored. My husband has ulcertive colitis and has been symptom free by doing the above as well. Good luck!

Re: Hail Mary Pass - dropped the ball
 

Re: probiotics, it always pays to sacrifice a capsule to make sure the darling little bacteria have not died from mishandling in storage/transit.

I add the contents of the capsule to an ounce of room temperature milk (some people use a 1/2 cup of milk and two capsules, but that seems wasteful to me). If I don't have "yogurt" by the following morning, I know it's time to ask for a refund.

The brands I use are Primadophilus Optima, Jarrow EPS (my favorite) and Trader Joe's Acidophilus, but I have friends who have had very good results with Culturelle.

Re: Hail Mary Pass - dropped the ball
 

These ladies have lots of great information useful to all of us. I think of you often, and I hope you have some good news soon. Does work make you feel any better? I'm glad you're part time and hope it helps you.

Re: Hail Mary Pass - dropped the ball
 

Probiotics great idea. I was also going to mention adding in Tykerb. With your bowel sitch keep in mind that it can cause a lot of diarrhea - especially at full dose. I've been on 3 pills a day for a couple years and it seems like enough of a dose with herceptin. Hang in there!

Re: Hail Mary Pass - dropped the ball
 

Well ladies, the ball has been picked up and I'm running with it.

After the CT, I had a PET scan. I took both to UCSF and my SuperSurgeon. I saw the PET and there was a big, bright spot right in the middle of the liver, so I was very apprehensive about that being cancer growing back.

The SuperSurgeon was not able to open the CD with the PET on it - it had some sort of program attached to it that conflicted with other programs on their system. However, he could see the CT and said he didn't see anything concerning in it, and he would never even have ordered the PET.

He is going to get the PET results another way and go over it with a radiologist and call me next week but it is looking really good for me right now.

So, the ball is back in my hands and I'm still running!

Oh, and I wanted to add for Rhonda - if you have a port you shouldn't open your probiotic capsule if it's florastor! It can infect your port and cause a whole-body yeast infection. It says that on the Florastor website. Be careful with it and always read the instructions and check with your doctor! I take a generic version of floristor and culturelle.

Re: Hail Mary Pass - dropped the ball
 

Go Ann! Run and don't stop. I am glad for you and so happy for good news. I will be thinking of you next week. I hope you feel terrific.