Any news on Joy?
 

I'm trying to check in as much as possible to see if anyone has heard about Joy. I can't help it - she has been in my mind all the time.
Ruth

Joy update
 

Hi Ruth, thank you for keeping my sister in mind. She got out of the hospital on Monday, her blood counts are holding at 10.5 on the HGB after 6 transfusions. She now has Nexium and Neurotin (sp?) added to her list of drugs. We met with the NP on Wed. before Herceptin, she has swelled up like a balloon, she added 22 lbs of water weight. The NP felt it was from all the fluids, she has gone down a bit, still swelling in feet and abdomen. And she has been very uncomfortable. They did add Lasix too. The NP is holding off on Ixempra for another week to let her regain her strength. Then she will see the onc. to see if she can continue. She's very depressed as she has run through a lot of drugs over the eight years and the NP didn't know of any other options given her treatment history. We are looking into other treatment centers like SLoan, Dana, Fox Chase, etc but travel would be tough on her. Any suggestions of drugs she could do, or places they have gone and would recommend would be greatly appreciated. I will include a brief history below. Thank you everyone. I read all your posts everyday and you are all in my thoughts! Thanks from a very worried, little sister! Jen

TX History
Taxtotere/Xeloda-18 months-Great response
Added Herceptin after about 6 months once HER2 status was tested
Herceptin and three AI's all in succession, had almost 2 years out of this
Herceptin/Carbo/Taxol-about 6 months-liver progression
Herceptin/Navelbine-about 6 months-liver progression
Tykerb/Xeloda-close to year-liver progression
DM1 Trial-About 5 months, it failed her, liver progression
Herceptin/Gemzar-3 months-she did have response to this combo, just not fast enough for onc
Herceptin/Epirubicion-6 months taken off due to great response!
Tykerb/Herceptin-big time progression-ascites also
Herceptin/Ixempra-great response, but three hospitalizations, low blood counts, bleeding ulcers and horrible neuropathy


She has had her ovaries out too. And she is also been on Zometa.

She has tumors in her bone, lung and liver. The bone and lung ones have never changed in 8 years. The liver has always had quite a tumor load.

Thank you all for taking time to read this. Jen

Jennifer, the job of care taker is so very difficult. But you are obviously blessing Joy each and every day. Please send my love and prayers and save some for you too. I wish I knew where she needed to go and what she needed to try next. Much love and many prayers. ma

Can she not return to Herceptin/Epirubicin if that was working so well? Get the Zometa 24hrs after the Epirubicin for synergy.

Hi Rich, the onc is worried about heart cardiotoxicity with the epi. She also had AC way back in the beginning too. But I will definitely ask again if that is the case. She has great heart function. Thanks for the reply. Take care, Jennifer

Jen
I know how hard this must be on you...please know we are here for you in any way...just wondering if there has been any talk of Avastin with a Taxane or with herceptin and a Taxane...there are many combos to use it with, and it would block the blood supply to the tumors. Hoping they find something soon....please tell her we love her and are praying for her to get relief and a miracle.

Hi Sheila, Avastin is what I really wanted her to do before Ixempra, because I had read up on Ixempra, especially on the bcmets site and almost everyone had a really difficult time it. But her onc won't use it. So, we are seriously considering going to her Denver onc. who she will use as a second opinion, but it's a hour away and the car ride is hard on her, but she will do it if her onc refuses it again. Which also worries her that she won't use it, but I have read of so many who have a great response on it. Thanks for mentioning it, it is reassuring to me to have someone else suggest Avastin! Take care, Jennifer

Maybe Myocet could be used instead of Epirubicin if cardiotoxicity is a concern..ok..maybe Epirubicin first then transition to Myocet. If that got things under control, maybe she could then move from Anthracyclines to Gemzar. Just thinking of making use of what's been tried without technically failing..before leaving those meds behind. Has she had Faslodex?
http://her2support.org/vbulletin/sho...ht=Fulvestrant

combining ER and Her2 therapies:
http://her2support.org/vbulletin/sho...light=combined

Maybe using/adding Rapamycin could be of benefit:

1: Cancer Sci. 2008 Oct;99(10):1992-2003.http://www.ncbi.nlm.nih.gov/corehtml...nce_150x34.gif Links
mTOR inhibition reverses acquired endocrine therapy resistance of breast cancer cells at the cell proliferation and gene-expression levels.

Ghayad SE, Bieche I, Vendrell JA, Keime C, Lidereau R, Dumontet C, Cohen PA.
Université de Lyon, Lyon, France.
Activation of the Akt/mammalian target of rapamycin (mTOR) pathway has been shown to be associated with resistance to endocrine therapy in estrogen receptor alpha (ERalpha)-positive breast cancer patients. Utmost importance is attached to strategies aimed at overcoming treatment resistance. In this context, this work aimed to investigate whether, in breast cancer cells, the use of an mTOR inhibitor would be sufficient to reverse the resistance acquired after exposure to endocrine therapy. The ERalpha-positive human breast adenocarcinoma derived-MCF-7 cells used in this study have acquired both cross-resistance to hydroxy-tamoxifen (OH-Tam) and to fulvestrant and strong activation of the Akt/mTOR pathway. Cell proliferation tests in control cells demonstrated that the mTOR inhibitor rapamycin enhanced cell sensitivity to endocrine therapy when combined to OH-Tam or to fulvestrant. In resistant cells, rapamycin used alone greatly inhibited cell proliferation and reversed resistance to endocrine therapy by blocking the agonist-like activity of OH-Tam on cell proliferation and bypassing fulvestrant resistance. Reversion of resistance by rapamycin was associated with increased ERalpha protein expression levels and modification of the balance of phospho-ser167 ERalpha/total ERalpha ratio. Pangenomic DNA array experiments demonstrated that the cotreatment of resistant cells with fulvestrant and rapamycin allowed the restoration of 40% of the fulvestrant gene-expression signature. Taken together, data presented herein strongly support the idea that mTOR inhibitor might be one of the promising therapeutic approaches for patients with ERalpha-positive endocrine therapy-resistant breast cancers.

Here is a discussion on Zoledronic acid (Zometa) sequencing:
http://her2support.org/vbulletin/showthread.php?t=39563

And the CSC discussion:
http://her2support.org/vbulletin/sho...t=39323&page=2

Prayers...
 

are with you both. Take care and God bless.

Any news on Joy?
 

Hang in there Joy and Jennifer !!!!!

thank you Jen for your update. Taking the time to keep us informed is a real gift to us all. Joy couldn't have been named any better as she is such a Joy! Keeping you both in my heart and prayers. XOX Suzan

Jennifer
I had a complete response with Avastin, and Chrisy took it for liver mets with Tykerb and she got about 1 year out of it...the bad thing was it raised my B/P...most who get it have such a great response...I was also thinking of smaller doses of Doxil with Cytoxin...maybe not so hard on the heart, or metronomic chemo...just keep coming up with things they could try...sometimes Dr's need a push (or a shove). If travel would be hard for her, what about an angel flight to a bigger research type hospital...she would qualify..Maryanne and a couple others have used them....anything for JOY!!!!!!!!!

Praying for Joy...

all the best
caya

jennifer I have both you and Joy in my prayers. Perhaps you could do a telephone " visit" with the onc that's an hour away to get his take on what he would rec, then to ge her there; do a medical transsport which would make the trip more comfy for Joy .

Hi Jennifer,
Looks like Joy has had some mixed response to the taxanes, but perhaps Abraxane might work.
Will keep Joy in my thoughts and prayers,
Barb

Praying for you both...

Paty

Thanks Rich, I forgot about Myocet, had read about it before. Will mention it to her onc. I also do think Gemzar, is an option if the tumor burden in her liver is much less. I think her onc said she was reluctant to try another taxane do to her partial response to it before. She has always done great on Xeloda, I am wondering if she could use that again in combo with something else like Avastin. Luckily Joy has really low blood pressure, so maybe the elevated bp's wouldn't be an issue. Thanks for putting on the thinking caps, it gives me hope! Jen

Is LC bead with Dr. Nutting at Swedish Hospital an option?

Jen,

Thank you so much for letting us know. Joy holds this special place in so many hearts and I want to tell you my humble opinion of why. She wrote here with such grace, humor and kindness...also she was just endearing as she was looking for love and dating. I had so many good laughs from the "losers" and the "hot ones" that she encountered. Even though support groups are in many ways impersonal...anyone can be anyone they want to be and not who they really are when it is on the internet. Yet, the way Joy wrote you KNEW who she was. I never met her in person but I feel like I would know her voice. Does that make sense? She is truly a gift and I know we are all praying for her right now. You are such a wonderful sister to do this for her and for us. Unfortunetely I don't have advice on treatments to try but you have gotten so much good advice already. I just want her better and not in pain.
Ruth

My prayers still continue for Joy. I miss reading her post's.

Jennifer, thanks for the update. Remember that we can use drugs we had taken before and look for that synergy too. Right now her weakness might prevent her from too much travel, but how about Angel Flights to provide her with air travel to the hospitals you are considering?

Ed has stopped the Ixempra, I know many have had a great response rate but this drug is too hard on him. He is still not completely healed and this has made him so sick that I am not sure he can restart chemo for a few more weeks. I am not trying to scare you or others, just keep an open mind if the doctor thinks another regime may be better for her. If you do decide, please keep an open mind if the drop the dosage. I am praying for all of your prayers to be answered. Sending great love and admiration to you two fine gals.

Let me know if there is anything I can do.>>Believe51

Keeping you both in my prayers daily. You are
a wonderful sister and Joy is a wonderful person
I wish you the best taking care of her. You have
received some great advice from others and I hope
one will be a success.
patb

Rich-I hadn't heard of Dr. Nutting before, but I am going to check out Swedish Hospitals website tonight, thanks for the suggestion!

Marie, I'm sorry Ed had to stop Ixempra, it sounds like Joy and Ed are in the same crappy boat! I too, would suggest anyone thinking about this drug to really talk to your doctor. And I am so sorry about your housing troubles, that's one more thing you should just not have to deal with. You are one tough gal though, you're my hero!

Ruth, thank you for your kind thoughts about Joy, I definitely understand what you mean. Because of her spirit and personality she has so many friends, sometimes I feel like her social secretary in keeping them updated and managing her schedule of visitors. I know she thinks about everyone and asks me for updates. She was very sad to hear the news about Caryn, I have not told her about Ester yet, I know she will be heart broken.
But we just have to keep fighting and holding on to hope!

Take care, Jennifer

Hi Jennifer,
Thank you for keeping us updated about Joy. I am so sorry to hear about all she has been going through. I, too, couldn't take Ixempra after a few doses, it was extremely hard on me. Has she ever tried Navelbine? A lot of people have had great responses with this drug. And Avastin is another one. Please tell her I am praying for her and sending healing thoughts her way. I miss her posts very much. I am so thankful that she has such a wonderful sister and caregiver. My love to you both,
Vickie

praying for both of you!

Jen,

Reading your posts it is clear you have become very well educated in your sister's treatment options. I am so glad that Joy has you to be her advocate. Please stay in touch with us. You are both in my thoughts daily.

Hopeful

Jen,

Please let Joy know she's in my prayers for finding a treatment that will work.

Joan

Praying for both of you.

Joy,

we miss you and love you

c'mon, comeback kid

I sure hope Joy is feeling better. Sending hugs and healing prayers.

Karen

Dear Jen,
Pls. know that Joy is always in my prayers. You're a wonderful sister! God bless your kind heart.

Hugs,
Gemma

Re: Any news on Joy?
 

Praying for you Joy. Miss seeing your incredibly sunshiny smile on here. Jennifer, you are a wonderful sister and friend to your sister. I pray for a positive solution.

Re: Any news on Joy?
 

I was also wondering if anyone had heard anything from Joy.

Amelia

Re: Any news on Joy?
 

Hi, it's Joy's sister Jennifer. Joy is doing ok. She hasn't been able to have another round of Ixempra due to neuropathy. But they think they will be able to do it at a reduced dose next Wed. Her liver function is still within normal range and her TM's are stable at 140 for 27-29. Her A/G ratio is still low, .7, which is a concern and her Alk Phos doubled in the last week to 463. And her weight is still an issue, she's at 102. Overall though, she is feeling better, but as she says the chemo will put an end to that. I'm off to she her now, I will let her know you were thinking about her. Take care everyone! Jennifer

Re: Any news on Joy?
 

Hi Jen,
I was on Ixempra from Feb. to May this year. Two weeks on, one week off on a very low dose. I didn't have much problem. It took care of my liver mets! Now I'm on Herceptin alone (weekly). I'm gaining weight now. I went down to 90lbs while on Ixempra. Now my weight is 110 lbs!
Pls. give my love to Joy. You're a great sis!

Hugs,
Gemma

Re: Any news on Joy?
 

Hi Jennifer. Thank you for this encouraging news about Joy doing OK. I am smiling. It is my sunshine for the day.
Michka