No Subject

[kathy]

Has anyone heard of Iressa being used to treat metastatic breast cancer?

[sherry]

I have a friend with liver mets who is on iressa and herceptin combined and her markers were stable the last time I spoke with her. Her main complaint was diarrhea and rash. I have heard as a single agent it is not too effective ( I seem to recall a 10% response rate ) but combined with herceptin might be more effective.

[Linda in MI.]

Shannon,

It's probably due to hormonal changes from the menopause. Please try not to panic. I know it's hard not to but just enjoy Christmas with your family because if you let it bother you you are going to be mad at yourself later on that you let it interfere with enjoying the holidays. We are all here for you, remember that.

Blessings and Hugs,

Linda in MI.

[Anonymous]

any long term surviros out there w advanced bc/ mets? navelbine/gemzar? success stories? how long did it take for the chemo to start working?

[Anonymous]

is herceptin the same thing as gemzar

[Kitty]

No - Gemzar is a chemo; Herceptin is an antibody specifically designed to bind to the cancer cells which overexpress the Her2 protein to stop the cells from growing and dividing. Chemo drugs generally slow or stop the growth of cancer cells. Herceptin is also known as Trastuzumab and is used only for Her2+ cancers. It can be used alone or in combination with other chemo drugs.
Kitty

[christine]

I was dx'ed as stage IV in June 1999 with mets to the chest and brain. Been on Herceptin since August 1999..Doing great.

Go to our home page and then to "Index" if you select "stories" we have several stories from long term survivors.

We are also in the process of collecting stories from other long term survivors which we should publish at the end of this month on our "new" renovated web site.

Hugs and well wishes
Christine

[Lolly]

Dx in January 2001 with mets to supraclavicular lymph nodes and skin. I started Herceptin/Navelbine and within 2 weeks saw skin mets shrinking, after 3 months no visible or palpable evidence and blood tumor markers were normal. After 6 months was NED and went to Herceptin only. I continue on Herceptin as a maintenance therapy indefinitely. I have blood markers checked every 3 months, and annual scans unless something seems worrisome which is then checked...So far so good!
Hugs,
Lolly

[Kathie in New Jersey]

I was told by an oncologist that Gemzar is the sister drug to Herceptin. So with that I would assume that they are somewhat alike

[Debby]

Gemzar is the sister drug to Navelbine.

[Lolly]

Oh yes, kleenex bits in the laundry!
I don't know if the dripping goes away once Herceptin is discontinued, because I've not stopped and don't plan to in the near future, I'll take it drippy nose and all!
Lolly

[kelly]

does anyone have pain in their ribs? taking femara gemzar and navelbine. mets n brain and liver. havnet had chemo since since friday 1/16??

[Amy]

My sister has breast cancer with mets to brain and liver. She has been saying that she has pain in her ribs, and on both sides, and around the liver. She's taking gemzar and navelbine. Are rib pains common - or is it because of the liver mets? They said she only had a few spots there.

[Lisa]

Amy,
First, I'm so sorry about your sister. You're obviously an active supporter for her and that's great.

I have liver and bone mets and am also on Navelbine. Occasionally, I have rib pains. I know they're not from the bone mets. Pain on the right side in back is definitely from the liver. And Navelbine can cause pains. Other than that, no one has ever really diax my rib pains, either. Is she on any type of pain killer? I am now on MS Contin (morphine) which has helped all my pains tremendously. I have very few (if any) side effects from it.

Lots of love and light to you both,

Lisa

[Anonymous]

Has anyone known anybody to have liptomenengitis? The cancer has gone to my spinal fluid and there is not much hope for further treatment. I have a short time to live but could try further treatment to see if it may give me a little more time. I feel fine now, but of course am not ready to die. I have to small children and just don't know what to do. Anyone have any ideas?

Thanks,Julie

[Staci]

My prayers are with you. May our Lord bless and keep you. Find strength in His peace. There is always hope. Do not give up looking for a treatment. If your onc. doesn't have a plan, find one who does. I pray you find the answers you are seeking. Stay strong and positive. You are not alone in this fight.

[Sue]

I am writing this because I am worried to death. I had my navelbine shot today and for some reason i wanted to look at my tumor marker chart. i noticed that CA 27.29 was around 25-31 at the end of last year after I had a surgery to remove brain met. and then CA 27.29 jumped to 41 in 2/04. i talked to my doctor about it and he said that there is nothing to worry unless CT scans proves any activity. i have to wait until monday to set up any appointments because it is too late today to call for appointments. i recently had spine and brain MRI and those were all clear. until monday, i have to sit at home and wonder about what it could mean and of course, wonder about the worst case scenario. any thoughts?

[Vi]

I was reading some of the stories on the site index and wondered how Kathleen, Lynn, Tracy are all doing. I see some posts from Lolly, so I can figure out that she's doing pretty well. The stories are fascinating, and I just wonder how everyone is doing.

[linda in MI.]

Hi Ladies,

Just to give you an update....my fluid kept returning in my opposite lung that I had the lund talc on (I had it done on the left), now have fluid on the right so last Wed. I had a pleurodex catheter inserted so I can have it drained at home every 2-3 days. I had it done yesterday and it was painless--just some coughing at the end. She drained close to 1 liter. I'm having it drained again tomorrow.

Hopefully this will all end in another month or so. I'm trying so hard to be patient. I'm getting physical therapy too since I lost some muscle mass/protein in my body since I've been laid up not being able to do much because of having to be on the oxygen.

I have made some progress and am feeling a little stronger but I just wish I could take leaps instead of baby steps.

Has anyone else ever had to deal with these pleural effusions?

Talk to you all later and hopefully with some even more positive news. Please keep me in your prayers.

P.S. I've been on the navalbine for 3 weeks now. Hope it's working and shows signs that it's "kicking in" soon!!

Blessings and Hugs,

Linda in MI.

[Sheila]

Linda
You are in my prayers that things will improve for you...seems you are going through alot right now...your bravery an determination are an inspiration to all of us...prayers for a speedy recovery.
Hugs
Sheila

[Anonymous]

What does skin mets look like? I have a patch of skin behind my right backbone (a little lower)that's been there about 2 weeks, not bruised or anything. Also, under the arm where I had the mastectomy there is an irration of the skin. Also, not sure if I should check with my gp or oncologist...Not sure the internist would recognize mets. Thanks

[Sandy]

Skin mets appear near the scar line. Type in skin mets and you will see some pictures. Its not a pretty site but they are not life threatening so the oncologist told me. The only way you will know if they are skin mets is a biopsy and I doubt you would get one unless it was near the scar of the mastectomy. I would be interested to see what you hear from others. Mine came up as 2 small red dots the size of a pencil eraser just above the scar. The oncologist kept saying he didn't think they were mets and I knew they were. When it started to spread then I knew and I had a biopsy that confirmed my worst fear. I would see my oncologist but then everyone is different and you may feel better seeing the other one. Don't wait too long. Good luck and let us know what you find out. Hugs, Sandy

[Lolly]

I had mets to the skin which first manifested as a rash about the size of a pencil eraser, at the base of my neck on the same side as the original bc. It took a few weeks to get a biopsy scheduled and by then I had bumps along the scar line also, so a suspicious rash anywhere should be checked out, and I agree with you that your onc should look at it, and then get it biopsied asap.
Hugs, Lolly

[Sandy]

Interesting! I learn something new all the time. Thanks for sharing. Hugs to you all. Sandy

[Anonymous]

Where do you type in skin mets. I tried but got hundreds of references and no pictures?

[Sandy]

May need to type in Inflammatory Breast Cancer under search. I thought I typed in skin mets. My chemo brain gets in the way. If this doesn't work let me know and I will check it out for you. Its been a while since I visited that site. May have been changed. I am in the process of doing the church newsletter at this point so need to finish it. I was quickly checking my messages. Hugs, Sandy

[Lyn]

Hi there, the only problem notifying the media is it would probably have to be in book form, the things I have been through this past 6 years, is Murphy's Law, if it was going to happen it would happen to me. For instance, I checked the radiator of my car, something I have done since the age of 15 so I knew what I was doing, but this time it was different it had back pressure so a delayed reaction with the radiator, knocked me down the driveway, my husband neglected to tell me he had cooked the motor the day before, probably hoping he could blame it on me, I rushed inside jumped in the shower took off all of my jewellery, and I had a habit of wearing a lot because it was a pain taking it off, so here I am, I grabbed the burn cream out of the refrigerator I had got from the burns unit prior, another story, covered the right side of my face and arm, ran next door told my husband to get his own bottle of coke from the shop I was going to hospital and I drove myself, I didn't even give him time to respond so of course the nursing staff at the ER looked at me weird,I had my AC chemo the day before, it was even weirder when later they told me my husband was outside so he must have left right behind me, then of course I had to lay there for hours with cold dressings on me to monitor the burn, where I had taken my jewelly off there were blisters, the metals had heated up and burnt me, apparently I had done all the right things, and who should come down and visit me, my Onc, he asked me what I had been doing to myself so I told him I was eveninng up the sides, so from then I had to have daily bandage changes for a month, and what happened next, my next dose of chemo, no portacath then, so the male nurse had to unbandage my arm, find a spot he could insert the canuala and give me my chemo, and re bandage me, so to this day he doesn't let me live it down. I have now scarring whatsoever and I healed while on chemo, and that was all within the first months of treatment in 1998, so you can see what I mean. I think I must be some kind of freak. I told the chemo unit that when they find the cure for cancer the aliens will think we are smart enough to meet them and this is all a test.

Love & Hugs Lyn

[lindaw]

Dear Annamarie

Just wondering how you are.

love
Lindaw

[lindaw]

Dear Annamarie
Wondering how you are . Am thinking of you often.

love
lindaw

[Sandy]

Oh, yes, I too have been thinking and praying for you Annamarie. If you can let us know how you are. Big hugs to you. Sandy

[Annamarie16]

Thanks so much for your post and your conceern. I am hanging in there. I have had seven radiaion tretments to my stomach area. They are still trying to shrink the three inch tumor that is sitting on the aortic. Unfortunately I am still vomitting every day. I have hospice now and have been able to get a hospital bed so am more confortable sleeping. They really don't understand why I am vomitting every day. The radiologist said he dosn't think it is from the radiation since he is not hitting the stomach area much, just a little. I am really getting tired, however.

[Sandy]

So glad to hear from you. Get plenty of rest. Your in my prayers. hugs, Sandy

[smith]

I've not heard of that kind of testing, but that is very interesting. I did Navelbine and herceptin and worked great for me.

[lindaw]

Dear Annamarie

Thanks so much for letting us know how you are. I hope the vomitting stops. I am thinking of you.

love
linda

[lindaw]

Thanks Lolly - hope it is fast tracked in Australia. I wanted to go on the trial for this and xeloda but need measurable tumour and so far haven't any bits returned on scar. Suppose this is a good thing.

love
linda

[celina]

Was wondering if anyone has ever experienced swelling of the face. My sister, who is currently receiving Taxol/Herceptin, is experiencing this symptom. She mentioned it to the visiting nurse, who said it could be that she is slowly coming off decadron...wouldn't that mean that she should NOT be coming of this medication? She will mention it to her doctor next week, but I was wondering if this is something that should be addressed immediately.

[Beth]

My face became swollen/puffy after decreasing the Decadron while I was on Taxol/Herceptin combo. I was crashing bad when the Decadron wore off and
I also was very anxious so the doc decreased the
amount. I have been on Herceptin only (due to NED) without Taxol, Decadron, and Benedryl for 3 weeks now and the swelling in my face is gone.

[Cat;hy]

I am on taxotere/herceptin/carboplatin and I have swelling in my face. Also get IV decadron and zofran. Unfortunately it's part of chemo.

[Steph N]

Yes, some puffiness in the face is a normal "side effect" of chemo in general.
I had it and it took a while to finally all go away after getting off Taxol and Navelbine. It seems to be OK with the Herceptin alone.

[celina]

Thanks for the reply...I relayed the info to my sister..it was a relief. Unfortunely, she is unable to get on this site as she can't read. She can see, but everything is quite blurry. We don't know if it's the tumors or the WBR that has caused this. Her vision was definetly effected by the tumors, but worsened after WBR..could be swelling but, needless to say, she is so very worried..we won't get head scan results for at least another 6 weeks. (very slow to get results here in Canada)
All this to say...she appreciates this site even though she is currently unable to read/ask things herself.

[celina]

Hi there,
Does anyone know in which order Herceptin/Taxol combo should be taken or whether it matters? I was initially under the impression that Hercepton is given first, followed by Taxol. (told my pharmacist) My sister received it in the reversed order yesterday. We asked about that, nurse said makes no difference.

[christine]

I was given the taxol first when I was on that combo in 1999..It must have worked.

Hugs and Well Wishes.
Christine

[Patty H]

They always gave me my herceptin first because when they drew blood my husband would run it over to the clinci next door and by the time the herceptin was done they had my results for the chemo. Patty H

[RSchrief]

I took Taxol with Herceptin for 12 cons. weeks and it was always Herceptin first. According to a study done, Herceptin hits the blood stream first, laches on to the cancer cells and then when the Taxol comes it is easier for the Taxol to attack. Of course I am sure since it is only hours apart it may not truly matter. Who knows but at least your sister is getting the two!

[Sandy]

I always had the Herceptin first and I was told it didn't matter except that we were more likely to have a reaction to the Taxol and therefore, if that happened the whole treatment would have to be stopped and at least the Herceptin would be in the system. It sounded good to me at the time however, its interesting to hear what others have been told. Hugs, Sandy

[KRISTEN]

I READ ON ONE OF THE POSTS ABOUT AN ALTERNATIVE TO THE TAXANES, THAT WAS JUST AS GOOD BUT DIDN'T HAVE ALL THE SIDE EFFECTS. COULD SOMEONE PLEASE LET ME KNOW WHAT THAT IS, AND IN WHAT COMBO IT WAS IN? THANK YOU. I HAVE A FRIEND WITH EARLY STAGE BC WITH MASECTOMY AND IS CURRANTLY DOING AC RX BUT WILL CHANGE THE NEXT 4 WITH TAXOL. SHE IS HER 2++ BUT NOT ON HERCEPTIN.

[Steph N]

You may be thinking of ABRAXANE. It is a new form of taxane that is less hard on the patient who takes it than Taxol or Taxotere.
My med onc likes this new form a lot and would give me that if I need chemo again.

[Avril]

Has anyone used Herceptin for early stage BC when the invasion is less than 5mm and no lymph node involvement but pathology was Her2+ and estrogen and progesterone negative? The oncologist has not recommended it since the invasion was so small but he did recommend chemo and I wonder if he should have recommended Herceptin as well?
Thanks,
Avril

[Meg]

Hi All,
I have my last chemo 7/9. I will then go to Herceptin every 3 weeks until 3/05. I was wondering how the doctors decide you're NED? How often do they check and how. I will begin radiation in August, any advice on that would be greatly appreciated. Thanks. I'm glad I found you guys.

[Pedram]

My wife just finished her herceptin trail after 15 months. Did anybody do post her2 blood level checks ? We feel a bit naked here without the Herceptin now and just wondered if any her2 test should be done which might indicate the need to get back on Herceptin. Currently she is NED. Any comments are appreciated. Thanks. Pedram

[Joe]

Your wife's oncologist should schedule follow up exams at regular intervals.
By blood tests, I assume that you mean tumor markers. This is only one of several tests that should be done. Your wife should continue to do self examinations and report anyting suspicious. Vigilance is the key.

Warmest Regards
Joe

[susanne]

Okay ladies! Anyone out there that has had removal of ovaries, tell me about it, and do you think it was worth it. ALSO, I have started on faslodex (and herceptin , which I;ve already been on for a year). The main "complaint" is bone mets, but I have had pleural based too in the past. The warning about these bone mets came when I discovered a few skin mets on my chest, which I had removed. I don't mind surgery. I believe in having as much taken out as possible.

[Lolly]

Are you ER/PR+? Just curious, cause I've wondered about ovarian removal myself, even though my cancer is ER/PR-.
Love, Lolly

[Elisabeth]

Yikes, quite a day for you. Kind people in our lives make all the difference does'nt it> I am glad you like your rad onc. I saw mine yesterday too and he is good as well. I can imagine the back issues. With the 3 seizures I had last month that led my mets I wrenched my upper back and just to lie on the table for less than five minutes can be distressing for me still. I am glad you are feeling yourself. I hope this works well.
Blessings, Elisabeth

[Deb F]

I'm looking at doing a 2nd opinion. Has anyone gone to the Cancer Center in Tulsa, OK or the one in Zion, IL. I'm considering going there, but would like to hear from anyone of you that have gone there. Thanks. Deb F

[Susan M]

Thanks to Joe and Christine and all
who post for the great info.
Does anyone know which docs are considered to
be the best in HER2 in the Philadelphia
area? NY to Washington DC?
I am just trying to get my ducks in a row should I need a second opinion in the near future.
Thanks,
Susan M

[Joe]

In late 2002, I posted on this and other sites a request for doctor's who were highly recommended by their patients.

These are the docs that you would recommend to your Mom, sister, daughter. best friend, etc.

Click the link below for the list.

Wramest Regards
Joe

[Sandy H.]

Has anyone heard of using ice during infustion of Taxol to prevent neuropathy in hands and feet? I was in oncology last week and this patient with lungs mets, had his hands and feet wrapped in ice by his wife. She was changing them every 30 minutes saying in Canada that is what they do during treatment. He said it was working because his hands and feet felt great. I asked him how many treatments he has had and he said 4 taxol. I don't think he has had enough to notice anything in his hands and feet. They use to live in Canada. Just wondering about this and if anyone else has done it? Hugs, Sandy

[Merridith from Canada]

I finished my rounds of Taxol in May of this year in Vancouver,BC. It was never suggested to me to do this, although I was told that applying cold to my head might delay the hair falling out...

[celina]

Hi Sandy,
My sister who receives treatment in Ottawa, Canada was telling me that people in her clinic use ice as well. I think she said that they leave their hands in ice water. Will ask more about this when I see her.

[Anonymous]

a

[arati]

to think i ddidn't know what wbr was last week.. discovered on sat i had multiple brain mets but tiny .. have been put on 12 days radiation wbr for a total of 30 grays which is diff from most other amounts and days i hv read on this site..does wbr kill the cancer cells forever or just slow thm down.. onc feels i can go to china after resting for a week ..what do u thinkeen .. ont

[Lolly]

Arati, I'm not sure if it kills them forever, but judging by what others have posted it's sure possible. Probably won't know the full story until it's all completed and enough time has passed that scans can detect a difference in size, etc. So glad for you that they've been caught so early, that's very good. Sending good, healing thoughts your way.

Love,
Lolly

[lindaw]

Dear All
Just a minor thing I know but just wondered. It is my 4th round of xeloda and I have past the peeling hands feet mostly only now my feet are incredibly itchy. I love to walk on carpet and the back verandah where the wood is raised and move my feet from side to side to relieve them Does this mean they will peel again?
Anyone have any experience with this - they keep me awake at night rubbing/itching etc.

love
linda

[Christine]

Linda,
I have never had Xeloda, but Taxol did brutal things to my feet and ankels. There are many reasons for itchy skin on the feet, such as edema or swelling, healing process or becoming more allergy sensitive to the amount you are taking. Benedryl may help in that case, BUT ASK YOUR ONC What the condtion is knowing what I feel it could be; he should be able to tell you.

[lindaw]

Dear Christine
Thanks - I will ask him.

love
lindaw

[Jackie]

Not sure what's in store for me next. My onc wanted to discuss diff drugs with my cardiologist since they all include cardiac toxicity issues of some sort. I'm sure I will get called in later in the week to go over the options. And, I hate to admit this, but I did have mild heartburn back when on Adria and it continued after treatment ended, so I'm on Prevacid permanently. However, I haven't had any heartburn in the 4 yrs since no matter what I eat and didn't really remember what it felt like. I guess the location of the pain and reading about heartburn in the brochure made me mistakenly identify it as such. I know that all kinds of strange symptoms can actually be related to heart problems, and women can experience totally different symptoms than men...but I never thought it would happen to me! While I feel very very lucky, I also feel that I should known better. We live and learn, don't we? Are you NED now? (Hope so!)