so it has been a while

[Joy]

Hi everyone, I haven't posted in a long time and just haven't felt like I had much to contribute lately. I've been trying to deal with things in my own circle of support. But right now I am feeling so sad and discouraged and worried. I know I have options and I'm grateful, but they tend to run out don't they?

After a couple of years of good response to hormonal/herceptin treatment, my liver mets grew and a couple of new ones showed up. So I did 8 months of weekly taxol/carbo/herc/zometa(1 x/ month). It took a while to get any response, then we had good response, but certainly not NED and then I plateaued and had quick onset of neuropathy so we figured no more of that. I started on Megace 5 weeks ago knowing that it can take 8 weeks to see if it will work. Meanwhile my CA 27.29(which works for me) had during tax/carb plateaued in the mid-80's. Then we quit and it went to 101, I had just started the Megace then. The CA from 8/15, I just found out is 156 and the onc scheduled a CT yesterday as a reaction to the numbers. In addition to the marker rising, the draw from 8/15 showed a slighlty elevated ALT and AST. My chem/metabolic panels have always been perfect.

I was already seeing my specialist in Denver this afternoon, so that is good timing, I guess and I'll see my local onc on Monday.

I know the CT will not be good and everytime the phone rings my stomach hurts-I know most of you have experienced this.

Unless my docs have some great new groovy non-chemo option, I'm pretty sure it will be chemo for a 4th time. Probably xeloda/navelbine or one at a time, maybe, I don't know. But what if I just start blasting through protocols and run out of options faster than I thought?

Next year will be 5 years since my stage IV diagnosis and I really thought I'd go beyond that, but now I'm wondering.

My kids are 7 and 10 and I want so many years with them, but do I have to start being real and preparing myself for not many years with them?

Just having a rough day, thanks for reading.

Joy

[mts]

Joy,
I usually am one of those that don't know how to respond to a post like yours because I have not been where you are. I do however believe that the post you wrote is common to those of us who someday might be in your shoes.
It's OK to feel down... but you have to keep trying with the options that are out there and know in your heart you are doing the best you can with what is available to you.
Please know I am praying for you and your family.

Warmly,
Maria (MTS)

[Sheila]

Joy
As a sister stage IV person myself, I do know how you feel....I had excellent response from Xeloda for neck nodes, but when I went off they reappeared in no time...so back on it again and hopefully it keeps working. Xeloda however is very easy to take for most...I am hoping you get a good report...it is scary, every day we live with that inevitable "WHAT IF." I try not to dwell on it, and live every day as though there is no tomorrow...occasionally it has been so good that the big "C" actually slipped my mind for an hour, a minute, a day/ and that was nice. My prayers and thoughts are with you that things will look brighter and you can enjoy the chemo break for a while!

[tammymarie1971]

Joy!!!! It is so good to hear from you!! We all have scanxiety, they just bring out the fear of the unknown in us, from the sounds of it you still have several options should you need them. I am on navelbine right now and my tumor markers from Aug 3 were 100 and yesterday they came down to 73! Have you been on navelbine before? It is fairly easy to tolerate NO HAIR LOSS!!!!! some have thinning, but that is so much better than complete loss. Lots of ladies around here have been on navelbine and had great repsonses. THERE IS STILL HOPE!!!! but we for sure all have the days where we have to dig pretty deep to feel any hopefulness!
I had liver mets dx'd in Mar'04 and a liver resection on Aug 23'04 and as of this June the liver is still clean!!! Although there has been some progression of bone mets I have four children who are young as well 12, 11, 8 &4 so I know that it can be exhausting to be "UP" for the kids, but they do keep us going don't they? Joy, you will just have to do whatever keeps you around and buy more time until they come out with the next great drug. That's what most of us are doing and some days it is too much, but there is always HOPE!!
Take care Joy, do something you really enjoy today ok?
Tammy

[Tom]

Hey Joy,

It's good to hear from you again, even under the current circumstances. Remember to get close to those here that love and support you. When everything seems to being going into the crapper a hundred miles an hour, I always come here to suck some life energy out of my friends, and recharge my batteries.


I think you have a lot of options left, and don't forget that Tykerb is in the pipeline for the end of this year. Perhaps you should get onboard for the EAP Tykerb, so that you can be ready if you need to go to it sooner than expected. It certainly couldn't hurt.


Are you doing everything you can with respect to your diet to help? Don't forget the green tea and green tea extract. They are powerful tyrosine kinase inhibitors. And don't let R.B find out you aren't taking your Omega-3 supplements. If you are already taking them, double the dose. There appear to be no upper limits to the amount of EPA/DHA that you can safely take. Also, remember the curcumin and pomegranate juice for it's ellagic acid content. It works well for prostate cancers, and prostate and breast cancers seem to respond to similar therapies from what I have read.


Let us know what your diet program consists of and maybe we can all make some suggestions. In the meantime, stay in close touch, as we all get a little antsy when we don't hear from regulars. Take care and may God lay His hands upon you during this trying time.


Tom

[brittd01]

Hi Joy,

I wanted to tell you that my Mom took Navelbine/Herceptin for her liver mets and it knocked them out completely when nothing else had. That was a year ago and they're still gone. She's on Xeloda/Herceptin now for a new spot that showed up in her clavicle bone and that combo is kicking butt too. I just know one of these options will work for you too.

xoxo,
Brittany

[al from Canada]

Joy, I'm know this is stressful and worrysome. Navelbine / xeloda has always worked well for Linda's liver mets and it has a track record of being a well tolerated comination, don't worry, it will work for you. As far as running out of options: newer research has shown that although cancer will become resistant to various drugs, those same drugs can be used with success after 6 months.

Lastly, try not to forget why your parents named you JOY.
Thinking about you,
Al

[TriciaK]

Joy, it is so good to see your pretty smiling photo online again! Hang in there! There has never been more hope in fighting BC than there is now. The future looks even more hopeful. The secret for us stage IV's is to keep fighting and praying and sticking together, buoying each other up and trying all the combinations. It's been 21 years for me now since my first DX with BC, 2 years since my last mets were discovered and I started chemo and herceptin and femara, and now almost 10 months since my last herceptin. I just had my PET/CT scan and it is still NED. Keep in touch--We are all sending love and prayers your way. Hugs, Tricia

[Lisa]

Joy,

So good to hear from you. Thanks for the help with my "adoptees" in Ft. Collins.

I profess to know how you feel. Although I don't have children to worry about. I've been metastatic for 3 years now. Constant chemo--one after another--with Herceptin/Zometa thrown in for good measure. My tumor markers climbed really high and never came down. As of last scans (late June/early July), I was stable. And waiting for Tykerb. My onc applied a good while back and so far, nada. I HAVE, however, started stumbling and losing balance, which definitely concerns me. Our HER2 friend, Mary, had the same symptoms before she became paralzyed, went into a coma and passed over.

What was the drug you mentioned? I'm not familiar with it.


Love and light,

Lisa

[tousled1]

Joy,

Although I have not been where you are, I can certainly understand how you are feeling. Just remember they are constantly coming up with new therapies for cancer. Keep a positive attitude and fight like hell. I'll keep you in my prayers.

[michele u]

Joy, I was wondering how you were doing. Are you in a clinical trial? How about Tykerb? There are alot of clinical trials for stage 4 right now. Keep fighting. I will be praying for you!!

[Joy]

THANK YOU SO MUCH EVERYONE for your beautiful thoughts and great words of encouragement. You have all helped me to remember that I have plenty of options. My specialist had great advice and reminded me that I don't have life threatening disease and I don't need to panic. Neither of my oncs feel that I am at a place of needing Tykerb yet, which is good cause i like to keep 'aces up my sleeves' and that is one.

My specialist said to stay on the Megace and watch the markers closely because 5 weeks is just not enough time. After Megace he has had success with haletestin (spelling is wrong), DES and Faslodex; in that sequence. He said the liver enzyme elevation was liver irritation, rather than cancer and was not concerned.

So I will see what my local onc has to say about the CT results when I see her on Monday. She definitely is more reactionary and I'm pretty sure will want to do chemo. I'm hoping the CT says what I think is says and there isn't anything really crazy.

About diet, I have eaten organic food for many years and my natural food preferences, since I was a kid, are toward vegetables and grains. I don't eat much meat, I eat a ginormous salad with olive oil at least once a day. I eat almonds, walnuts, pecans. I do eat cheeses and fruits. Over the years I have lost my interest in sweets, so i do well with that.

I have also done supplementation for years. During taxol/carbo I was in such a fatigued funk that I slacked a lot. But now that I feel like myself again I'm back on track with the following:

RM-10 mushroom complex
Green Drinks
Evening Primrose oil
Flax, Borage, Cold Water Fish Oils
Calcium Complex
Jarrow Cox 2 inhibitor combination (inc. oils, reservetrol, curcumin, ginger, greent tea, devil's claw, quercetin)
Quercetin
Curcumin
Milk Thistle/artichoke
Pro-biotics
Zinc
Selenium
Triphala
Garlic

I also see an acupuncturist and drink nasty herbs that i boil up. She customizes based on my markers or side effects, etc. I'm sure that I'm forgetting something.

Nutrition is something I've been interested in long before cancer and I love the information that is shared here on the subject. So any thoughts from folks are great.

This site is the best and you all are wonderful. Thank you!

[Tom]

I KNEW IT !

I could tell from the glow of your face in your picture, that you were one of those bird seed eating, herb tea drinking, hippie types, walking around with acupuncture needles sticking out of your forehead. Sheesh ! You just never know who you're gonna run into on the Internet.

[lu ann]

That's what I don't get about this disease. You have a person who does everything right, doesn't smoke, eats right, exercises, has a good mental attitude, etc, etc. Then you have someone who totally abuses their body and they don't get cancer, but the healthy one does. Cancer is one complicated disease. Just when you think you have a handle on a cure, the disease changes and you have to keep trying different remedies. I sometimes feel like I have an alien in my body.

Blessings from Lu Ann

[saleboat]

Hi Joy,

I don't have any words of wisdom, but wanted you to know that I was very happy to see your name show-up on the boards again-- although I wish you were having an easier time of it. You were such an inspiration to me when I first logged-in to this site.

All the best,
Jen

[karen raines hunt]

Dear Joy,

I have been thinking of you so much lately. I ask about you whenever I talk to the women at "Hope Lives." Please know that I understand your fears and hope and pray that your treatments will take care of those liver mets.

I finished my last Herceptin treatment in July. I am feeling well.

Love,
Karen Hunt