It's official

[KsGal]

I went in today for my biopsy, and it is indeed liver mets. If I had not found this forum, i would most likely be devastated, but I feel somewhat hopeful. My doctor told me he has a patient with the her2 positive, hormone negative like me, and she is six years NED as of this week.
I start Herceptin next week, and taxotere/carboplatin the week after. Not sure what to expect from that, but intend to do my best to keep my job and live a normal life while doing the chemo. Any advice you all have to give me on this regimen would be greatly appreciated.
Im officially ready to join your list of stage IV survivors, and I sure look forward to getting to know all of you.
Btw...Im Jody from Kansas. Im 43, and I have three children, two of whom are teenagers that still live at home. I am an assistant manager in a restaurant. Looking forward to knowing more about you all as well.

[KsGal]

I meant I went in for the results of my biopsy. I type faster than my brain processes things..lol

['lizbeth]

Jody,

I like your positive attitude and wish you an easy time with your chemo. Herceptin shouldn't be bad at all. I worked part time during chemo and full time with Herceptin - as a diamond grader.

Plan more downtime for rest and self care and you should get through the tough part - chemo okay. Exercise helps to keep you strong during and after treatment.

Wishing you an easy time and a future of NED.

[karen z]

Hi Jody,
You have a good, strong attitude and you will find many other individuals with the same attitude here!! You will also find the most current options for treatments and help, given the experience and education/self-education of the group. You have found THE site you want to be at. This group of individuals never cease to amaze me with their information.
Karen

[BonnieR]

Hi Jody. I'm sorry that the small hope I was extending did not materialize. But you had yourself well prepared for whatever the results and recommendations. My chemo was pretty much the same as yours. I had Taxol.
Expect the first treatment to be a loooong day. Dress really warm and comfy. Treatment rooms are always cold. Bring snacks and water. My center served us sandwiches. Have something to stay busy, reading, iPod. I kept a journal. You will also probably be sleepy from the premeds they administer. I was hyper the day after but then crashed around day 2 or 3 so you might consider scheduling your days off work accordingly.
My appetite went away so I tried to eat high fat and calorie things. Frequent small snacks of cheese, yogurt, Ensure drink. My onc said this was one time I could splurge on hamburgers, milk shakes etc, to maintain weight.
Have easy foods around the house. And when people ask how they can help, TELL them....they could make meals and bring them over, or take the kids for pizza, do some housework. Whatever you need.
Build a team of treatment specialists and attend groups if your facility has any and you have the time. Keep notes of everything. Have someone with you at appointments to help hear what you are being told...
That is all off the top of my head. I know others will be along to offer support.
Keep the faith.

[chrisy]

Well, once again I follow Bonnie... Can't figure out how she is always one step ahead of me! Sorry that the biopsy report was not what you wanted to hear, but it is just information and now you know what you are dealing with.

I had a similar combo, Taxol/Carboplatin/Herceptin in weekly doses (3 wks on, one wk off on the T/C, Herceptin every week). I think it is more common to get it every 3 weeks. This combo slammed my extensive liver mets into remission for 2 1/2 years.

If you don't mind, I'll share some practical tips based on my experience. I really thought I felt pretty good all during my chemo - so don't claim any side effects until/unless you actually get them. Lots of people do fine.

I continued to work throughout my treatment, although my job is not very physical it does require a sharp mind which at times (especially after a few cycles) became challenging. I did that mainly because being at home was just a reminder that all was not well, and I would be in tears by noon every Monday. But some people choose to take more time off of work and either choice is fine - you will make the right choice for you.

Just listen to your body and be gentle with yourself, but it is helpful to stay as active as you can - you will feel better and be stronger.

I had relatively few side effects (zero nausea or anything like that, mild neuropathy and some fatigue that got cumulatively worse towards the end of my 6 cycles.) EVERY patient who got taxotere in my onc's office also had bags of frozen peas which they put on their fingers and toes to reduce the risk of damage to the nail beds. Far as I could tell, it seemed to help.

Your onc/nurse will probably send you home with prescriptions for anti-nausea meds, and you will probably also be premedicated in the IV with these. I never needed any of the prescription meds, but it was good to have the back up. Do make sure to let them know if you are having any problems at all - they really can do a lot to mitigate side effects.

You probably will also receive IV steroids to prevent allergic reactions. These can interfere with your sleep (like, have you up cleaning house at 3am!) so I would always take an Ativan on the evening of my treatment. It's an anti nausea med, but also helps you sleep which is why I took it. I also asked them to reduce the steroid dose after a bit, which they did.

All in all, the chemo is doable, and worth it. With Stage IV, the goal is a bit different: maximum efficacy with minimum toxicity. This helps you to stay strong and continue to give that stupid cancer the what-for.

Be well,
Chris

[CoolBreeze]

My first regimen was the same as yours and I worked throughout. I got tired though so working was it - somebody else had to do housework and dinner. I hope you have help.

My advice is to drink a ton of water. I mean, tons of water. It help flushes the system. Since you will have a metallic taste to your mouth, you might try this water: http://www.delightwater.com. I didn't find out about it until after I was done with TCH and on to another regimen that didn't give me metal mouth but I still drink it.

Also, you likely won't be sick or nauseated - your problem will be constipation. So, you want to eat for that. High fiber breakfasts, lunches, snacks and dinner. You may not want to eat that way but you'll find it's worth it.

Good luck from one liver metster to another. I'm NED now after a resection and hope to stay that way for many years. I hope the same for you.

[her2 newBEE]

Really sorry to hear about your situation, but as others have mentioned there are so many good treatment options for HER2+ breast cancer. And, while technically stage 4 is incurable, there is more advancement in HER2+ bc than any other population, increasingly HER2+ is moving into the realm of a chronic disease rather than a death sentence. Herceptin has really changed the prognosis of this disease.

One thing you might want to question your onc on is the addition of Carboplatin to the regimen. My wife was diagnosed Stage 4 about a year ago, and we had several oncologist suggest the "gain to pain" ratio is not all that favorable with the addition of Carboplatin. Plus, at Stage 4 this is marathon as opposed to a sprint, so considering the toxicity of each line of treatment is in order. Carboplatin at 1st line is probably debatable, but worthy of a discussion.

[KsGal]

I wasn't aware of the issue with the carboplatin, so I will ask him about it next time I see him. Thank you for that information.
Even though it is the first day of the new year, I am apparently in the middle of throwing my very own pity party. I have just been off all day. I start my treatment this upcoming week, and the thought just keeps going through my head that this might be the last few days I feel "normal" ever. EVER. And my negative throughts are just ruining everything. When midnight came and everyone celebrated, I was sitting thinking..I wonder if this is the last year I will see. I hate to even post this, as so many of you have fought so hard, and I just sound weak, but Im being honest. I had a really down day, apparently. Lots of hugs to everyone, and thank you for answering my questions.

[michka]

I just read your post and I want you to know I understand how you feel. But there are many many options for you and good stories. Try to only focus on those. I turned stage 4 last December and thought I would never have a normal Christmas or New Year anymore. I had a wonderful Christmas with my family and a nice New Year with some friends. I was really able to enjoy them although I know all this is fragile. So stay strong. One step at a time. If you don't feel well in your body or in your head come back to the forum. I hope the first treatments will go smooth for you. Give us news. Hugs, hugs, hugs. Michka

[Paula O]

Jody, I know all this is a huge shock. I hope things go really well for you!
Paula

[CoolBreeze]

Having down days is very normal and don't beat yourself up for it, we all do it.

Here is my trick for trying to get over it - I think, "What if this IS my last New Year's Eve? Do I want to be sitting around, worrying about my death as the ball drops to 2012, or do I want to be celebrating seeing this upcoming year?" Look around at the people you are with - be in the moment and choose to find happiness.

I think, "What if it's not my last New Year's Eve? Then I will have wasted this one by worrying - am I going to worry next year too? And, the year after that? Will I never enjoy a New Year's again because of my mental state?"

Not me. I'm going to celebrate making it, not worry about not making it to the next one.

The truth is, we do have control of our thoughts and emotions. You can push negative thoughts away for a later time and be in the moment, enjoying yourself with your family.

I know you are newly diagnosed and that's the hardest time - it's the most shocking. You don't know much and you think the worst. I think I thought more about dying when I was originally dx'd stage II than two years later when I was dx''d stage IV. But, you'll get over it - sometimes, you have to force yourself though.

As for feeling good: I've been on chemo continuously for about two years now including the regimen you are doing, and I have had lots of great days - many more great days than bad days - in fact, almost all of them I felt fine. I can't even come up with a bad day. I never had any nausea, or major problems and I worked throughout. I got tired when my reds go low, but that can be dealt with, (and my onc does a transfusion at 8.5 which I love!) and it's not the kind of tired where you can't get out of bed or do anything. You can live a full life on chemo.

You don't lose your hair with all of them, by the way. I have a full head now. But, you will lose it on TCH.

You can plan. On days you are tired - say your reds are low, read a great book. Some days I had plenty of energy - clean the house and make extra casseroles for the times you are tired. Some nights, all alone, I confess, I felt a bit depressed and sorry for myself. That's what ativan is for and it doesn't last long.

Always hold on to some hope - that you can get well, that there will be a cure. I did the liver resection to give myself a shot at living and also to give myself hope that I can see my son go off to college, see my other son get married, etc. I read that some people get 10 plus years after resection! Some are cured! Making the decision to cut out half my liver was not easy but hope is important, so find stories of hope.

You can't live without hope, so right now, concentrate on all the positive stories you find - new treatments, people who have lived years with mets, (I know one lady I have an email correspondence with who is on her 20th year now and is a famous published author, and I personally have a friend who is on year 11 and is NED - hers spread to her brain! I know women with liver mets who are NED after six years (no resections) You won't find all those stories in the medical stuff online so you find them on forums, support groups, etc. Concentrate on those and not the scary ones. There is no reason you can't have a good outcome too.

It's important, I think, to fill your brain with positive thoughts and positive stories. It may not cure you but it will make your life with cancer easier.

None of it is as bad as your imagination. Learn how to handle the side effects of your chemos and buy the stuff you need ahead of time, and make a plan. For example, l-glutamine has been studied for neuropathy with promising results. I tried it, and it worked for me. So, make that part of your chemo days. I also am a firm believer in drinking lots of water, as I said before, so buy water as I mentioned or buy a brita filter so you can keep track of your intake. Eating properly on your chemo is a must because constipation is the main SE. You don't want chemo constipation! So, buy your high fiber foods and control that, but also keep a cupcake in there too.

When I was bald, I couldn't stand a wig so I wore scarves. I pretended it was in an experiment and paid attention to who noticed, who treated me different, etc. Almost nobody is the answer, people are too wrapped up in themselves to notice you. But, you may be surprised how friends come through and help, people you never expected! My coworkers were amazing!

Okay, sorry, I didn't meant to write a dissertation on cancer. I hope some of it makes you feel better and I didn't over-step. The key is, you don't have control over cancer but you do have control over how you choose to react to having cancer, both with what you can put into your body to help you deall with chemo and with your emotions.

And, having some control is better than having none and feeling like you are spinning, IMO.

I always acknowledge the reality. I have a fatal disease. But, maybe I'll be the lucky one who gets decades. If I don't, I don't want to spend it worrying. I want to spend it enjoying my family and doing the best I can.



Good luck to you and *big hugs*

[KsGal]

Thank you all for taking the time to post to my thread and reassure me. I feel like such a baby. Being that this is so new to me, the bad thoughts seem to always be running through the back of my mind...kind of like that bad Muzak music they used to play in elevators and doctors offices. I don't like this soundtrack! And CoolBreeze...your "dissertation" helped me so much. Thank you. I am not familiar with l-glutanine, is this a supplement that I can purchase? or is it something the doctor needs to prescribe. Also, for the dreaded chemo constipation, is Metamucil something that is permitted? There is so much information to take in, and so little time it feels like. Im going to have to get FAR more organized to pull all this together. I was on no medications or supplements or anything at all before this. Now Im reading about Claritin to help the side effects of the shots, prevacid, zantac, ativan, bags of frozen peas..LOL! I have a wig ready to go, which I will probably wear despite the discomfort because I don't want to freak out the kids I work with. I have a minifridge next to my bed for liquids and yogurts. Im about to clean the heck out of house. I can control these things, its those I can't control I worry about. Lots of love and prayers to you all..and happy new year!

[Joan M]

You have many options to manage this disease.

I became stage 4 in Jan. 07 after being stage 2 in 03. I've been on only Herceptin since my disease advanced and NED since Oct 08, thus far a little over 3 years. The cancer was treated with local procedures, and these are options that most oncologist never mention and that many doctors disagree with.

The cancer spread to my lung and brain. I had a lung wedge resection in 07 and the cancer recurred there a year later. I then had radiofrequency ablation, or RFA, which burned the recurrence (cryoablation, as well as chemoembolization is also used to treat liver nodules).

In the same year, a brain met was discovered (I had no symptoms, but after my cancer became stage 4 my onc agreed to give me an annual brain MRI, and on the second scan, 16 months after the first, showed a nodule in my left frontal lobe). The nodule was treated with surgery (a craniotomy) followed 6 weeks later with 5 dosages of targeted radiation to the tumor bed (IMRT).

The lung nodule was HER2+ on biopsy before the surgery but my brain nodule was HER2-.

If you want more information about local procedures here's a link to a video from a conference I attended in October that was given my the Metastatic Breast Cancer Network at Johns Hopkins. See Dr. Hirose's presentation. That presentation, as well as all the others, was excellent and very informative.

http://mbcn.org/special-events/categ...presentations/

You have a lot of options. Stay strong. Praying for you.

Joan

[CoolBreeze]

I had that track in my mind too but it goes away. It's new to you.

L-glutamine you can buy in any health food store, or a Vitamin Shoppe or something like that. It's a powder that you dissolve into cold water. I did it three times a day: before chemo, day of chemo, day after chemo. I forget how much but it's on the container. I had neuropathy which went away. UCLA did studies on it so there is some soft science behind it. Always talk to your onc before taking anything of course.

You can take metamucil - works great. I waited for three days until I took it; I preferred to control it with diet. But, sometimes you may need a little extra help. I ate a very high fiber diet - bran cereal in the morning with a pear, lunch was lentil soup (or any progresso high fiber soup). Dinner example would be meat, brown rice, artichoke or some high fiber veggie. That mostly worked but still once in a while I'd get stopped up. I'd buy high fiber drinks at Whole Foods and if that didn't work, on day three I'd take metamucil. Worked every time.

Clariton is for before the neupogen/neulasta shots you'll get to bring your white count up. Didn't work for me but hopefully it will for you.

As for the wig, I now work in a high school but worked in a middle school at the time of my "baldness." The kids were all kind and nobody freaked out. I tried a wig but they are a different thing when bald than when you have hair. I know some women manage to wear a wig all though - two hours was all I could stand. Kids of all ages are more accepting than you know.

Anyway, you'll do fine. There are lots of treatments for mets now but you do have to find a progressive onc and be near a major cancer center. Hardly any doctor can understand why they let me do a resection for liver mets. The belief has always been that cancer is everywhere anyway so treating one section is useless. But, they are finding that isn't always the case.

[Deb33]

Welcome - I worked with a Naturopath throughout my first 6 TCH and an Acupuncturist throughout my last 4 A/X. Both made things much easier for me. For the constipation I drank "Smooth Move" tea from the Health Food store - worked for me. And I had weekly B12 shots and a weekly glutathione IV which is shown to offset chances of neuropathy. The Oncology Review has quite a few studies. You are in the terrifying part of the journey - the unknown. You will get through this, just take it a day at a time. And I always iced my fingernails and toenails during the treatments. It made me feel like I had some control and my nails were great throughout.

You will make it through this - reach out to the folks on this website - they have so much knowledge and experience and such a positive outlook. They will give you hope when you run out.

Blessings to You.

[KsGal]

I just want to say thank you to you all. This is such a scary time for me, and I feel like you have held my hand and gave me reassurance and guidance that I really needed. At home with my children, who are not little children but teenagers, I feel I can't really express fear or sadness. I don't want them to be any more hurt than they already are. To be able to come here and vent and ask questions is really so helpful to me. So thank you again, from the bottom of my heart.

[MJsHusband]

Sorry to hear about your biopsy results. You have definitely found the right forum to help you through your treatment. These ladies(and a few men) are very supportive and will give you some good advice along the way. Make sure you ask a lot of questions (on here as well as with your oncologist). Best wishes. ~Greg

[Vicki revised]

The tips about Zertec and Zantac for the neulasta side effects work! Also, you will get a metal taste in your mouh from the carbo that will ruin the taste of eveything. Switch to plastic utencils, paper plates (some stoneware has metal in it), plastic cups and switch from canned drinks and foods to plastic cans. It really helped. Also, Biotene makes mouthwash, toothpaste and gel for mouth sores. They are a life saver if you get dry mouth and sores. When your hair starts falling out your scalp will be tender and sore so I wore a terrycloth turbanto bed to reduce the friction. I had chronic nosebleeds daily when the hairs in my nose fell out. Be careful about infection. My ENT gave me an antibiotic ointment to apply and it felt soothing. Also, a coolmist humidifier in my room at night helped out with the overall dryness of my skin as did aloe vera bathoil and Eucerin lotion products. Your eyes may run alot but still use artificial tears for relief. And enough can't be said about stool softeners! Good luck--you'll make it. 6 rounds of TCH eradicated my liver mets as well as the malignant nodes. It works.

[Vicki revised]

I understand your feelings about wearing brave face around your children. Mine were in college but living at home. I hid my fears from them b/c I didn't want to scare them esp since I totally believed I would go into remission. I wanted to be an example of how to deal with adversity and share my faith in God's plan for us. As their mother I still needed to protect them and many people told me how proud the boys were of my courage.

However, we are only human and there were a couple of meltdowns around them and a couple of "roid rages" where I was not very nice. But on balance they understood those were the exceptions and caused by decadron and chemo brain. So, if it happens, don't beat yourself up. When those happened they understod it wasn't the real me and instead of being offended they were by my side comforting me.