Wednesday night prayers coming from me too

[Joy]

It is funny how quickly we can gain a habit. At least this is a healthy one. Every wednesday, once i realize it is wednesday-you know how that is-i hope, I kick it in for all of us.

I have been missing everyone and thinking about so many of you and following your updates.

I would like to share mine as I am very scared and sad. I have been on Tykerb and Herceptin for 6 weeks ish. Both of which I have been on before and had progression, but never had combined the two.

In the meantime I have not been feeling well. My whole torso feels tight and uncomfortable and sharp pains plague it frequently. I have rationalized it to be so many other things, but today's vist to the onc confirmed, at least by physical exam, what i was fearing. My liver is very swollen. Digestion is weird (full too fast, nothing sets right). We don't know 100% if it is irritated or mets freaking out or what. Markers had come down and then went up a little and enzymes did the same. They have all been worse, but it is the wrong direction. Bilirubin is good and A/G is a smidge low.

So, this is yet another treatment that has not worked. Epirubicin/Cytoxan worked, but we are hesitaant to go there again so quickly. I think that I am no longer her2 pos and that is why DM-1 failed and herc/tyk maybe failing. I am scared, scared, scared. Scared that no treatment is going to work any more, scared that I will never feel well again, scared that just when everything else in my life is exactly where I have always wanted it, that i will be taken.

Any thoughts or success stories after liver swelling would be SO appreciated. Tips or tricks for taking care of this are also very appreciated. I eat a lot of organic produce and grains-a little ice cream now and again-I'm only human. I have been supplementing with:

Milk Thistle
Fish/Krill Oil
Reishi
D
cal/mag
probiotics
lecithan
B's
just adding IP-6 again now
and adding Shitake/Maitake too

would really like to add Vodka today, but probably not a good idea

So Eric, Caryn, Sheila, Gemma, Irene, Marie, Ed and everyone who needs parayers or not-I am sending them with tremendous love and admiration.

[Carolyns]

Joy,

I will say an extra prayer for you tonight.

As far as treatment options go, have you thought about Heat Shock Protein trial? There are others who know more about it but I think that it may be thought to reverse resistance to Herceptin. I think.

It is on my list if I can't get T-DM1 next. They have a trial here in South Florida for HSP.

Love, Hope, Peace,
Carolyn

[Mary Jo]

Asking God to be with all my friends tonight.....Help....Heal......Peace.......Love.... .please!

Mary Jo

[Kim in DC]

I will be praying also for you!!!!!
Kim

[Believe51]

Joy, what goes around comes around. I spent my evening tonight saying prayers for the family I love. You were included in those prayers as always, I just feel that the more in unison we are on praying the louder will be our pleading.

Please breathe my Angel and give some time for this combo to work the magic we yearn for. Ed progressed on both treatments also but who is to know where one stops and another one picks up, so in a sense I feel that disappointment for us both. We do not even know yet, this combo together could be your magic potion.

I wish you much peace as you again 'wait' for something else on this journey. We are wishing and praying the same prayers as you are. Here is to kicking cancer to the curb. I am sending love and thanks for your prayers and thoughts. We never walk alone!>>Believe51

[eric]

Joy,
I'm sorry you have to deal with these fears. I said my prayers and as always included all the people on this site but after reading your post, I went back to the well and added more specifically for you. I hope you find that your fears are unfounded.
If you believe that your her2 status has changed, can they rebiopsy?
Eric

[Rich66]

So good to see you posting.
My mom felt exactly what you feel now in September. The digestion issues/fullness went away but she has had continued visible swelling.

Are you taking the IP6 with Inositol?

Sorry if you've already addressed this: Have you consulted Swedish hospital in CO about liver directed therapy? (Dr. Nutting)
Have you had/considered a Her2 serum test?

Did you progress on Taxotere?

S-1 is being studied in the US now..might be available off protocol. Similar to Xeloda but, as I have been told:

"it has DPD inhibitor, so more dose in body for longer and no G toxicity"
M. Wasif Saif, MD, MBBS
Associate Professor
Co-Director, GI Cancers Program
Yale Cancer Center
Yale University School of Medicine
P: 203-737-1569
F: 203-785-3788
wasif.saif@yale.edu


An oldie but maybe a goody. I have this in my file:

1989: Okino T; Kan N; Nakanishi M; Satoh K; Mise K; Yamasaki S; Teramura Y; Hori T; Kodama H; Ohgaki K
[The therapeutic effects of OK-432 (Picibanil )combined adoptive immunotherapy (AIT) against liver metastases of breast cancer]
Gan to kagaku ryoho. Cancer & chemotherapy 1989;16(4 Pt 2-3):1913-9.



We studied the effect of OK-432 combined AIT in 24 cases of liver metastases of breast cancer. Eleven of the 16 patients (69%) who received intraarterial transfer responded to this therapy. On the other hand, no patients responded to intravenous or intraportal transfer. The minimum cell number for a therapeutic response was 10(9) cells. Four patients had abscopal effects after therapy. The serum CEA level paralleled the therapeutic effects. There were no severe side effects accompanying this therapy. These results indicate that intra-arterial OK-432 combined AIT should be the first choice therapy against liver metastases of breast cancer.

Picibanil: A lyophilized preparation of a low-virulence strain (SU) of Streptococcus pyogenes (S. hemolyticus), inactivated by heating with penicillin G. It has been proposed as a noncytotoxic antineoplastic agent because of its immune system-stimulating activity.

1: Oncol Rep. 2005 Feb;13(2):289-94.Links
Inhibitory effects of OK-432 (Picibanil) on cellular proliferation and adhesive capacity of breast carcinoma cells.

Horii Y, Iino Y, Maemura M, Horiguchi J, Morishita Y.
Department of Thoracic and Visceral Organ Surgery, Gunma University Graduate School of Medicine, 3-39-22 Showa-machi, Maebashi, Gunma 371-8511, Japan. y.horii@jcom.home.ne.jp
We investigated the potent inhibitory effects of OK-432 (Picibanil) on both cellular adhesion and cell proliferation of estrogen-dependent (MCF-7) or estrogen-independent (MDA-MB-231) breast carcinoma cells. Cellular proliferation of both MCF-7 and MDA-MB-231 cells was markedly inhibited in a dose-dependent manner, when the carcinoma cells were exposed to OK-432. Cell attachment assay demonstrated that incubation with OK-432 for 24 h reduced integrin-mediated cellular adhesion of both cell types. However, fluorescence activated cell sorter (FACS) analysis revealed that incubation with OK-432 for 24 h did not decrease the cell surface expressions of any integrins. These results suggest that the binding avidity of integrins is reduced by OK-432 without alteration of the integrin expression. We conclude that OK-432 inhibits integrin-mediated cellular adhesion as well as cell proliferation of breast carcinoma cells regardless of estrogen-dependence, and that these actions of OK-432 contribute to prevention or inhibition of breast carcinoma invasion and metastasis.


Maybe new info will come out of The liver symposium is in Chicago starting May 14th.
http://theliversymposium.com/
I may go to this. It has doctors and patients involved in the numerous presentations. If it isn't being taped by someone else, I might tape it myself.

What does your onc say?

[Gerri]

Joy,

I am so sorry that you are going through such tough times. Please know that you are in my thoughts and prayers.

Take care,

[Joan M]

Joy,

I'm sorry to hear about your liver. You are in my prayers that you don't have liver mets and to find the right treatment if the Tykerb/Herceptin combination isn't working for you.

Do you think any of your supplements could be interferring with your treatment. I'm really supplement-ignorant. I don't take any, and when I have good intentions I buy them, take them for a few weeks and then get lazy.

Take a deep breath and find out what your next steps should be. I would imagine your onc wants to get a scan of your liver to see what's going on and then decide how to proceed.

Sending hugs your way.

Joan

[Lori R]

Joy,
While this is a very frightening time, I am sure there are more options.

I couldn't tell from your post as to whether you have had a recent CT scan of the liver. Is there a single, tumor. If so, you might want to consider the RFA or cryo surgery. (I am scheduled for cryosurgery next week to whack down a 3 cm tumor in my liver.)

You've mentioned a couple times that maybe the tumor isn't her2+ anymore. Have you had a recent biopsy? Understanding the pathology of the tumor is really important.

Rich provided me with information about Swedish hospital that I have filed in my "next steps" folder. Sounds like this could be yet another option.

Joy....I can still hear the fight in your post. You will find another option. It's not time yet!! You have wayyyyyy too much to live for. That counts for a lot.

Hugs from Colorado.....Lori

[MJo]

You're right, darlin. No vodka.
Make sure the natural additives you take won't irritate your liver.
The combo of femara and some other meds I take are hard on my liver. So I've eliminated anything else that could stress my liver -- no herb tea blends. No booze until I'm off femara in two years.
We're here for you.

[lkc Gumby]

Dear Joy,
I am sorry that you are having difficulties, and feeling low.
You are a strong spirit , with lots of love, and are a long way off from exhausting avialable treatment.
I do think it is a good idea to get a biopsy, to check for any changes .
I don't have any problems with my liver, however I do know it well.
We can survive with a minimal amount of liver function. It's also a problem when the tumor load blocks the ducts, at which time a stent can be considered to releive the fluid build up as well as tx with chemo.
When my mom's recurrence was dxed as liver mets, she had "too many lesions to count"She was 75 at the time and had mutiple other health issues.
Anyway, she responded to Taxol, and AIs and lived well for over 5 yrs.She passed on right before her 80 birthday.
I believe strongly in the power of prayer and you are in mine.
God Bless.

[chrisy]

Joy, you were especially in my prayers last night because although I had not read your post yet, I felt something might be troubling you.

I can't comment on the stomach symptoms or liver swelling; other than that was what got me dx with liver mets...but I guess one takeaway from that is that stomach symptoms can certainly be caused by what's going on in your liver.

Eric and others beat me to the punch on one of my thoughts - that being have you had your er/pr/her2 levels tested again? I know biopsies are no fun, but...

I also have a few other thoughts I will try to shake out of my head.

IP6 - I think this IS inositol - so I'm not sure I understand Rich's question on that, maybe he can clarify.

On your tykerb/herceptin combo, remember that neither of these are cytotoxic - that's why they are usually used in combination with chemos. Maybe it's just not enough without the extra punch of chemo.

You've received a lot of exotic ideas, and I know you have a great oncologist who has been creative on your behalf in the past. A new option will present itself.

Seems to me you are dealing with at least a couple issues (in addition to all the normal stuff of life which for you always astounds me anyway!). You of course need to regain control over the cancer, but as you and your team consider options you also need to do what you can to maintain your liver and overall health.

If you can do any of the above it will lift your spirits but I suspect your spirit will have pulled itself up soon anyway because that's what YOUR spirit does. And of course we have all lifted you up in prayer as well.

I have 2 suggestions.

First, I notice your list of supplements is too short! I suggest you add Olive leaf to your list. I did a lot of research before going on the DM1 trial and found this study showing evidence that this might help reverse resistance to Herceptin. Here's a link to the study. http://www.ncbi.nlm.nih.gov/pubmed/17490486

My other suggestion is my now famous liver detox juice fast. It's famous at UCSF because the NP's actually recommend this (with the appropriate disclaimers of "there's no proof bla bla bla") to help manage the elevated liver enzymes from DM1. I'm trying to attach that below.

Both of these things should be firmly in the column of "can't hurt, might help", but of course you want to let your onc know what you are doing.

Joy, holding you in my heart and praying for that next window to open wide for you.

Much love
Chris

7 day Liver cleansing juice fast

Main factors, must take daily: when I am absolutely religious on the beet juice and carrot salad, I do well. For me, these 2 are the most important.

Beet juice (you have to juice it yourself) 3 oz/day, you can gradually increase this but I pretty much stay with the 3 oz.

Carrot salad Grind up carrots to a PULP. For each cup, add a dressing of 1T each lemon juice and good olive oil. You can use more, but not less. You can also add raisins, pineapple, or whatever to make it more interesting. I eat this with slivered almonds and it is really really good. You have to eat 1 cup daily.

Green juice Again, this is from a juicing book and frankly who has that kind of time! You’re supposed to have 1 cup daily, made from celery, greens, cucumber, whatever. You can also get green powder and make green juice from that.

Green broth 1-2 C/day This is also pretty tasty! Made from 1-2 cups each celery, zucchini, and green beans cook these until just barely softened in just enough water to cover. Then puree in a blender – it should be fairly thick. Add 1-2T fresh parsley and 1T butter and season to taste – with whatever you want! I sometimes toss a garlic clove in when cooking the veggies, and sometimes a bunch of artichokes which are also healthy for the liver.

Drink at least 8 glasses of water of course…

Supplement with some milk thistle

All of this is in addition to your NORMAL diet of varied juices ha ha – remember this is from a juicing book.

This is a 7 day fast but I am on it pretty much perpetually (at least the beet juice/carrot salad part) with no ill effects. My LFT’s rat me out when I don’t do it. One word of warning, after a day or so your digestive tract might start producing…evidence…that you are eating a lot of bright red and orange things. So don’t freak out!

[lisajones4]

Joy -- You are in my thoughts and prayers. May peace be with you and know that we are all walking this journey together.

Lisa

[chrisy]

By the way...I've got this weird song running through my head all day...


I've got that JOY JOY JOY JOY down in my heart...

...always

But the song is driving me nuts. I'm gonna try to change it to "Dancing Queen" which will also drive me nuts, but not as bad as "It's a small world"

hang in there buddy

[Patb]

Adding my prayers, thoughts, concerns everyday for
you. Please have the tumor checked if possible and
see if it is not Her2. I don't really know if they can
do that, it just seems good to know.
Take care and continue the good fight.
patb

[Rich66]

Might be available in compassionate use. I have no clue:





http://phx.corporate-ir.net/phoenix....953&highlight=



AVE1642 Clinical Findings Reported
The poster, "A phase I study of AVE1642, a humanized monoclonal antibody IGF-1R (insulin like growth factor 1 receptor) antagonist, in patients (pts) with advanced solid tumors (ST)" (abstract #3582), also was presented today. AVE1642 is a naked (unconjugated) antibody that was originally developed by ImmunoGen and was licensed to sanofi-aventis as part of a broader collaboration between the companies. AVE1642 works by blocking a pathway used by cancer cells to survive chemotherapy, and is intended for use with such agents. The compound is being evaluated by sanofi-aventis in combination with approved chemotherapy agents for the treatment of solid tumors and hematological malignancies in Phase I studies.
The findings presented today are from a Phase I trial that assesses AVE1642, dosed once every three weeks, in patients with solid tumors. In this study, AVE1642 is administered to patients as a single agent for the first treatment cycle, and then in combination with docetaxel (75 mg/m(2)) for all additional cycles. Increasing doses of AVE1642 are tested in new cohorts of patients to establish the dose to be evaluated in combination with an array of chemotherapy agents in upcoming solid tumor studies.
The presentation featured the results from the evaluation of three different dose levels - 3, 6, and 12 mg/kg - in cohorts of four patients each, and finds AVE1642 to be well tolerated both as a single agent and in combination with docetaxel across these doses. The authors note that a substantial and sustained biological effect is seen with AVE1642 at doses above 3 mg/kg, and select the 6 mg/kg dose, given every three weeks, for future evaluation of the compound for the treatment of solid tumors.
Encouraging evidence of anticancer activity was reported even though the study patients all had solid tumors that had failed to respond to previous treatments. Of particular note is a breast cancer patient who had previously been treated with taxanes and entered the study with skin metastases. She experienced a significant improvement in her metastases in response to treatment with docetaxel in combination with AVE1642.

[Faith in Him]

Joy,

I am praying for you also. WE all undersand being scared and I really feel for you. Praying that if your current treatment isn't working the right one is just around the corner.

Tonya

[michka]

Joy, I just read your post and want you to know I am thinking of you and understand how you must feel.
I hope there are no mets but isn't there a way to be sure, to be more precise? Would a Pet/Scan allow you to have a better idea? A biopsy? What have you planned ahead?
My questions are maybe stupid but we all care for you. I am sure there are options. Michka

[schoolteacher]

Joy,

I will be praying for you. Hope you have a good day. Let us know what is happening.

Amelia