On herceptin/dmi trial

IRENE FROM TAMPA · 08-11-2009, 12:13 PM

Hello all -

I need feedback from my sisters and brothers.

As most of you know, my response for the last 13 months has been great while on this trial.

Since I had my hip surgery, my Bilirubin count has elevated to over 3 (norm being 0.2- 1.2 according to Quest Labs ) It has come down to 2.8 and as low as 2.4 last Monday) The problem is that I may be kicked out of the study because they do not want a liver failure on there hands. I can certainly understand their point, but we are all so dissapointed since I have been NED now for about the last 6 months. I have never responded this well on any drug I have been on.

While I was in for my hip replacement, I had several units of blood as well as plateletts. Was on Morphine, Percacet, Tylenol, etc. I did get yellow while in rehab but at present do not show any other signs of and liver ailments, other then the Bilirubin. My AST & ALT are within normal range. My Alkaline Phos. is elevated (175) but slowly coming down.

I just had my blood drawn yesterday and we were hoping it had lowered but it is 2.8.

I am so upset since if they do kick me out of study and I have progression it will just be more toxins through my liver and maybe not work as well.

My onc seems to feel that all of the years of chemo has put a strain on my liver. I have kept all of my records and before the hip surgery, I was under 2.

I was wondering if maybe all of this surgery has caused it to elevate, which I am sure at the time it did, but it has been 4 months now from the surgery.

My research co-ordinator is still trying to get me more time with the Genetech people - but I do not have much hope. Meantime, my scans are good for now.
But I do not think I will hold NED until drug is approved by F & D.

Any clue? Anyone having issues with their Bilirubin counts and what to do. They do not want me to be on any liver cleansers(do not know if they really work) and since my platelettes tend to stay on the low side, I have to be causious of what I eat also.

Hope everyone doing well and take care.

Darlene Denise · 08-11-2009, 01:27 PM

Irene: Maybe you should consult with a liver/digestive specialist. Maybe ask about CQ10?

There was talk of compassionate care use of this drug. Any way you could continue on that basis?

Hope you find a way through this. Keep us posted.

Darlene

IRENE FROM TAMPA · 08-11-2009, 01:37 PM

Hi Darlene -

Thank you for your quick response and comments.

I did forget to mention that my onc send me to my G.I. doctor to rule out any obstruction and he did rule that out as per my Pet scan.
My scans do not show any enlargement or shrinkage to my liver so he said I could continue to take the treatment, as does my onc. But I guess the bottom line decision comes down to Genetec.

I will ask about the compassionate use but since I am on the studay already with these issues I really feel they will not give on their decision.

I will keep on trying.

Thanks again

Barbara H. · 08-11-2009, 01:59 PM

Hi Irene,
Ask your oncologist to call Genentec and explain your issues. They need to know how positive this treatment has been for you. I was also almost taken off the trial because of lung inflammation issues that I have as a side effect. They monitor me carefully with scans and I have been able to stay on it.

However, my tumor markers have been slowly rising, so there is a chance that I may be finished with this drug in September when I am due for my next set of scans. If that happens I will be upset. September will mark my two year anniversary with this treatment.

Good luck and best wishes,
Barbara H.

vickie h · 08-11-2009, 02:13 PM

Hi Irene,

I am sorry to hear about the biliribin but have my suspicions that your surgery included some pretty powerful drugs that can take months to flush out of the liver. Since your counts were ok before the surgery, I would suspect that there is an overload of drugs connected with the surgery. Any reason why you can't take any liver cleansers? I wake up each day and drink 20 ounces or more of warm water with 1/2 lemon squeezed into it. this flushes out the liver everyday before you eat, etc. It is harmless, otherwise. I also take probiotics several times a day which my Onc says propagates friendly bacteria in our intestines, thus releiving the liver, or helping it, when getting rid of toxins.
I don't know if this is much help, but try drinking that lemon water (it must be warm) and see if that makes a difference. As you can see, I have been on every chemo in almost 6 years and yet my liver has continued to stay healthy (knock on wood).
I pray that you can stay on this wonderful trial. i am in LA for the next few days on a new clinical trial for pazopanib as there is no TDM! trial near me. My next option is ? Oh how I wish I was on your trial, I have such great And drinking carrot juice is also detoxifying.things about it.
Wishing you the very best. Also, cutting back on meat really gives the liver a much needed rest.Please let me know what happens, I care about you very much.
Love and Hugs,
Vickie

IRENE FROM TAMPA · 08-11-2009, 03:39 PM

Thank you Vickie and Barbara for your suggestions.

I will try the lemon and warm water since I do not think that could be harmful.

Barbara - I am sorry to hear your markers are on upswing. What are the counts. hopefully this is nothing you have done so well on this trial.

Take care and lets see if the lemon/water helps.

chrisy · 08-11-2009, 05:45 PM

Irene,
It sure does seem like more than coincidence that your bili shot up after the surgery. Obviously everyone wants you to have a healthy liver - and you make a good point about "moving on" to another med or progression not helping with that at all.

I forget, are you still on a 3 week regimen or 4 weeks?

Is your onc concerned about your your well being due to the bili? Seems like it is improving, slowly. I don't know what "grade" that level would be considered. On balance, does she feel continuing on the DM1 would be in your best interests? If so, having her contact Genentech could be helpful.

Interesting that your other liver functions are so good - I'm the opposite with bili within normal and everything else out of range.

On the liver cleanse, you say "they" don't want you doing anything - who is "they"? I would think that somewhat normal dietary interventions as have been suggested here and before would be ok. And of course may or may not help...

Hang in there my friend, keep us posted

Laurel · 08-11-2009, 06:27 PM

Irene,

Tylenol is probably your culprit! It is in the Percocet and you indicated you have been taking plain Tylenol as well. Tylenol is wicked hard on our livers. I do not take it as it spikes my studies hugely! I suggest refraining from anything that has acetaminophen in it and you should see your liver labs improving. Sure hoping this helps and you can stay in the trial. I am so glad to hear it has been so effective for you!

Becky · 08-11-2009, 07:06 PM

I agree with Laurel. Its the first thing that came to my mind.

suzan w · 08-11-2009, 07:09 PM

as I read through the replies, I too thought about tylenol...Surely something to ask about. Good luck!!

ElaineM · 08-11-2009, 09:23 PM

I agree with Vickie, Laurel and the others who suggested the problem might be from Morphine, Percacet, Tylenol or whatever other drugs you may have taken or take now. Every drug has possible side effects. Many drugs can affect the liver. Also drug interactions can affect the liver or other organs. It may take awhile to flush whatever you don't need or no longer take out of your system.
I see no reason why you can't eat foods that are benefical to the liver. I heard beets and kale are good. So are alot of fresh fruits and vegetable juices. Drinking enough water may also help flush out the liver. If I were you I would just go ahead and try a few of the things related to food and nutrition and I would not even think of sharing that information with an oncologist. I would also look up every drug I have taken in 2009 to see what the possible side effects may be. Chances are one or more of them can cause liver problems. I don't have liver problems, but I am going to try the lemon and warm water myself. Sounds good !! I have taken milk thistle every day since my diagnosis and never had liver problems. I also eat alot of fresh fruits, veggies, and yoghurt. I try to eat healthy well balanced meals. It all helps.
Good luck. Take care.

StephN · 08-11-2009, 10:16 PM

Hi Irene -
Oh! I empathize with you on this dilemma. Having had a massive mets invasion of my liver, this is one organ I have taken care of.

Even while on treatment for my mets, I was OKayed to take Milk Thistle in a normal dose. I also drank Detox teas, that clean the blood as well, so the liver does not have so much "debris" to filter. One pill and one mug of the tea per day was all I took. Still do on occasion. Red clover is a good blood cleanser.

Hope your hip is healed to where you can skip the pain pills altogether.

Let us know how this goes, and we are behind you!

There are some good thoughts in the other answers.

Sheila · 08-12-2009, 05:29 AM

Irene
I am also wondering if the acetaminaphen is causing some issues....it is so hard on the liver. Hoping they can get these issues resolved, you are such a miracle when it comes to this drug....and all these issues seemed to rear their head with the hip fx. If your oncologist thinks the benefits outweigh any risks, a call to Genentech is in order....you have come too far Irene
Sending Love and Prayers for a quick resolution!

IRENE FROM TAMPA · 08-12-2009, 06:06 AM

I want to thank everyone for their helpful comments on this issue.

My research co-ordinator called me late last night and confirmed that they had seen and increase in my bili count before I had the hip surgery but I guess was not an issue at the time. Of course, with the hip surgery came alot of other pain killers and transfussions.

I removed myself from taking any drugs at all such as Tylenol, etc about three weeks ago when my count was not coming down but the counts seem to stay between 3 and 2.4. They seem to come down a bit and then go up a bit. I never really abused my intake of Tylenol but with an already abused liver by so many years of chemo's who knows.

My onc office has been great about fighting my cause but Genetec sent them an email last nite and said "NO" to resuming on the study. I was just hoping they would give me a little more time to see if anything miraculous would happen.

I will continue trying anything that I can to get those counts down, but I feel that once you are out you are done with that drug. I am really upset.

Meantime, I am showing no signs of any activity at the time so until I do again, I will not be given any treatments of any sort. I have to discuss with my onc soonest I can get in to see him, and see what he thinks.
Although I failed with Herceptin by itself, maybe I can take that as a maintenance. I am not sure how that will work if we do.

I will keep everyone posted as to what happens.

Thanks again and everyone take good care.

Love you guys

Joan M · 08-12-2009, 09:15 AM

Irene,

What about taking ibuprofen instead of Tylenol if you need to take something? I was told it doesn't have the same effect on the liver. But can anybody on the board verify that?

I'm on Percoset due to pain from my recent thoracotomy, and since the painkiller contains acetaminaphen, I'm supposed to take ibuprofen and not Tylenol (this is all new to me since I normally take only Bayer aspirin, and I've only bought Tylenol when I've had surgery).

Is it possible to get only a temporary suspension from the trial until your liver counts come down?

Joan

IRENE FROM TAMPA · 08-12-2009, 09:37 AM

Hi Joan

A temporary suspension is what I am praying for if I can see some changes in my bili but I just don't think they will go for that.

They said they have given me enough time without treatment (70 days) and it should have come down more already.

Thanks for the advise and I will continue trying. This has been working miracles on me and would like to be given another chance .

yankeebikachic · 08-12-2009, 11:58 AM

Irene,
Hang in there! Do not give up, keep pushing to stay in the trial! You are not jaundiced or feeling otherwise unwell, are you? If I were you, I would also mention to them that stress and cancer can make the bili count go up. 3 or 2.8 is not that bad. I have had elevated bili for over one year. At 1st, they were a little worried, then just concluded I either have Gilbert's syndrome, the cancer was affecting it and/or stress from having a recurrence. I have been at that or higher for a while. I think I was at 6 for a while! My onc wanted me to hang in there and they were not concerned unless it got closer to 8. I was actually yellow for quite a few months and even though I have stayed on treatment, I am getting better and holding steady at 2-3.
Beth

yankeebikachic · 08-12-2009, 12:00 PM

Have you tried any supplements?? Can you take milk thistle or SAM-e?? I have read good thinks about brightly colored veggies, too. I read an article once where the author swore by beets for her healthy liver function.
Beth

Gina · 08-12-2009, 12:55 PM

If I were you, I would just go back on the Herceptin while off the trial...just to be safe. Herceptin has wiped out all kinds of stuff in my liver...all by itself...hope you stay clear...whatever you decide...

FYI,
Gina

Barbara H. · 08-12-2009, 02:07 PM

Hi Irene,
I was very upset to learn that Genetec took you off the trial. I have told your success story to my oncologist and others at the Dana Farber. As tough as it seems at the moment Gina's advice may be worth taking. Stay on the Herceptin and add another treatment if needed. It may actually be helpful for your body to have a rest, and at the moment you are NED. Eventually, TDM1 will be approved and it will be an option for you because you have not failed it.

You asked me about my markers. I am currently in NH and don't have the sheet with me. My CEA was a little over 5 and the other one 27/29(?) was 50 or 6O. My corrent oncologist considers scans more important and 3 1/2 months ago they were fine. However, I know it's not a good sign when my markers start rising so I am also expecting to have to go off the trial. If that happens, I will have used up this treatment and it will no longer be an option.

Best of luck to you Irene. You might enjoy your break and maybe you will continue to be NED for hopefully a long time.
Barbara H.