Hey ladies! It's me sofeemay! I had my lung biopsy last wends. But afterwards I got an "air leak" so they had to put a chest tube in my lungs. And I needed a blood transfusion even though I've been off chemo since august 2007.  I was in the hospital for 8 days..that sucked. I had to celebrate my 29th b'day in the hospital too! To make matter worse. It's confirmed that I have mets to the lungs. I have a pet scan 2morrow and mri on wends. I start chemo on friday. Doc and I haven't decieded what drug to start off with. I think he thinking imperza with that oral chemo pill. I can't think of the name of that right now!! I'm triple neg.

1st dx in jan.2007/lymph nodes removed(5 positive)/chemo..nothing worked/mastectomy/ and radition. I Thought I was in the clear in Nov.2007. I guess not :(

Please share ur thoughts on any chemo side effects. I had an awful time with ac last time. A little with taxol and caroplatin.\

**sorry about the grammer mistakes :)

So sorry about your lung mets, sofeemay! I'm triple neg, too, and while I don't have lung mets, I had a a recurrance in the axillary lymph nodes 3 months after chemo and rads.  I'm on oral Cytoxin, along with 2 IV drugs. Is Cytoxin the oral chemo that you are going to get?

Marsha 

Hi Sofeemay, Sorry to hear about yr. lung and being inpatient, and another young BC.  I had a lung lobe removed in '05 due to mets, and it went OK.   My new mets (many) are triple neg.   I take oral Xeloda.  The S/E I got was burning feet, had to stay off my feet a lot, put in cool water and use lots of cream on them.  It happened after 4 weeks on and feeling better now on week off.  So it's manageable.  Good luck on yr. scans.  Our MRI has piped in radio (or yr. own CD) maybe yours does too.  Hope all goes well, Dee

Sofee hugs dear. I am triple neg with lung mets and have been for over two yrs. There are lots of meds out there. So dear bc sis you must keep the faith and remember you are a awesome prayer warrior. GOD BLESS...

Sofee, sorry to hear that your tests came up positive.  Please don't compare A/C to anything now.  I think we all did that with initial dx and it is the PITS!!!!  There are lots of chemo options to try and the difference on this dx that the last dx is to give you a good QOL along with as much quantity as possible.  When you are initially dx they throw the book at you, now they will give you chemo in less toxic doses.  It does no good at this point to keep you ill constantly.  I have heard good and bad stories about imprexa, although I find it an interesting choice for the first line of tx.  I hope you do well on it and it works great for you!  Sorry you have joined our group officially but you are more than welcome!

my doc is gonna start me on xeloda and ixempra  or xeloda and avastin. What do u guys think I should try first? Side sffects??

I don't knwo much about Xeloda or Ixempra, but I am on Taxol and Avastin and I am doing well.  I have nose bleeds, and muscle cramps from the treatment....not sure if it is from the taxol or avastin,  I have had a nasty rash from the avastin, but it only lasts about 3 days after each treatment.  Best of all it appears the treatment is working!  Good luck with your decision.

Hugs

Deb C

Hi Sofeemay -

Another triple neg with a lung met (and a liver met) here ...  

So sorry to hear about the complications of your lung biopsy.  I remember being informed about the possibility right outside the operating room when I had my lung biopsy.   A terrible way to spend your 29th b'day.  

As LuAnn said, an Ixempra combo is interesting for first-line mets treatment.  There's a lot of promise for Ixempra - and I've heard that some women handle it pretty good and its hard on others.

I've done dose dense AC, carboplatin & taxotere, the PARP Inhibitor clinical trial and now, just carb.   However, I've had periods of NED during this time.

Where are you being treated?

CalGal 

Deb C,

I am on a blind trial...I find out if I am receiving Avastin next monday.  My question is your rash.  what kind of rash?  I have one its on the top of my hands, a little on forearms.  I've been told its the taxol because avastin doesn't cause a rash.  What is your thought on this? 

Teresa

Oh Sofee, I'm sorry, but stay stong and get that chemo kicking ca!  Prayers your way...

Sofee, so sorry to hear you had a rough time with the lung biopsy. I hope you find time to celebrate your birthday now... 29 should be fun, it truly sucks to be dx with mets!

May you have a positive reaction to the meds and a minimum of SE! I'll be thinking of you and remembering you in my prayers.

God Bless,

Miss S

Sofee:

  HUGS to you... I am so sorry for your dx.... this sucks. But hang in there. These ladies will help like no others will.

Wendy A

I live in atlanta..The last time i was dx in 2007 i went to one of te best cancer centers in my area. But it was too far. Now I gonna go local. My new onc is very smart. I wished I would have used him the first time around.

Sending you love and hugs...

I just learned that I have mets in my liver, lungs, bone and a node near my chest wall. My onc didn't mention anything about a lung biopsy.   When is that done? 

I haven't had the courage to ask my onc how many lesions I have and I am not sure I would want to know.   Is that something that I should ask?

I am also triple negative - today is my first day on Xeloda

Teresa -  My rash is on my face and head.  It is called a cystic acneform rash and is from the avastin.  I don't get it the week I just get Taxol.  It looks like small white head pimples surounded by just red puffy skin....nasty!  And it itches.  My doc looked it up and it is a listed side effect on the avastin....

Good luck

Deb C

Chris -

Did you just learn that you had the mets (in the various locations) all at once?!   I know the mets dx is devastating.   You'll find that many of us are doing quite well.

First off, just in terms of how much medical info we want to know, we all deal with bc differently.  Some of us like to be extremely informed, do a lot of research and have a collaborative relationship with our onc's.  I'm on that end.  I get copies of everything - blood-work, the actual scan on CD and the report that goes with the scan or biopsy.  Others rely on the expertise of their oncs or are in-between. You have to decide what is right for you. 

Is your onc basing his/her dx on a PET/CT scan?  If so, why not ask why a liver and/or lung biopsy has not been done?  You might also ask about a bone scan if that hasn't been done.  You might also ask why Xeloda was chosen rather than another treatment.

I hope you tolerate the Xeloda and that it works for you.

CalGal 

CalGal,

Yes...I learned about the mets all in one call.

I had a lump in Oct. '07 then a mast in Nov., (followed by rads), after a PET/CT scan showed additional tumors in the breast but all else was clean.   The PET/CT I had in May showed the mets.    

My onc did base the dx on the PET/CT scan.  What would be the purpose of a liver or lung biopsy?   

I am trying to learn but it is so much.  Every new step requires learning new terminology, new tests and results and then the most important part..knowing what questions to ask!!!

My onc is starting me on Xeloda alone.  She would rather try one drug at a time - she feels there are more options.  If she gives me two drugs together and they didn't work...she wouldn't know which one didn't work which lessen my choices.

Is Xeloda hard to tollerate?  I will also have an infusion once a month for the bone cancer.

This is certainly an ongoing process

Hey chris- my doc did the lung biopsy to confirm the mets he saw on the ct scan. Also to make sure it was mets and not a new cancer.

Chris,

Like sofeemay mentioned, the purpose of biopsy is usually to confirm MBC, and also sometimes the mets can have different pathology than the primary BC.  But given your multi-organ mets discovered at the same time, it does sound like MBC.

And speaking of multi-organ mets, some oncologists may feel that you'll need to be more aggressive with the treatment.  Have you ever considered getting a 2nd and 3rd opinions?  There's always pros & cons about using monotherapy vs combo.  If you hear arguments from both sides you may get a better feel of what's best for you.

Xeloda is actually a good drug that has been used for MBC for a long time and is known to be able to control the tumor for a long time.  So hopefully it works for you.  And if it stops working after a while, you may want to consider Carboplatin (known to be very effective in triple negatives) or Ixempra (also known to be quite effective in triple negatives).

sofeemay,

I heard good things about Ixempra, and I'm currently taking Avastin+Ixempra.  Just had my 2nd infusion today.  You may check the thread about Ixempra on this board, it may be useful as far as side effects etc.

Best wishes for everyone!!!

Chris,  sorry to hear you are now in our club also.  I agree with the post above.  As much as you like your onc I would always get a 2nd opinion.   The reasons being  1) Gives you peace of mind that your onc is on the right track 2) This onc you work with you will be with along time, it is always good to see at least one other to see other types of working skills, you need to have an excellent repore with this doctor and you need to have a high comfort level with them.

Chris and Sofeemay,

My mets are triple neg. from the biopsy of pleural effusion.  The other mets (brain, liver, spine, chest cavity,) was based on MRI, but couldn't start treatment without biopsy.  It had "morphed" from my origiinal ER+/PR+HER2- in 1999.  So, it is a long, weary process for us to go through, I understand the frustration. 

My second opinions are through Dana Farber in Boston, (about 1-1/2 hours away).    My treatment is at a local clinic, my oncologist is a genius (who doesn't mind conferring with DFC), & the nurses are so good!   I take Xeloda (hot feet side effect), Avastin (slight nosebleed and very dry throat and nose).  Had Zometa once and lucky me got the rare "flu like symptom".

FYI TRIPLE NEG.S  , Dana Farber, Boston is offering a clinical trial for triple neg mets with Cisplatin as first line chemo. 

Best to all our sisters, Dee

From one triple neg to another I'm so sorry and I really hope your treatment works.  There was a post from a 75 year old women horserider I think and she came through two recurrances and is doing really well now. You can read her post in Nice things people have said. It sure cheered me up. 

Thanks so much for all your comments.  I have thought long and hard and will get 2nd/3rd opinion.  I told my  family and they were so happy.  I need to make sure they understand that I am doing everthing I can.

Now, how does one go about getting a 2nd opinion?  My onc said she is not the type of doctor that would mind.  I have two facilities that I know I can get 2nd opinion.  I have already contacted one and they want me to send my records for review.  I guess I will call my onc's nurse and start with her.  I get so tired of thinking and doing.

Thank you for all your support.  I started my Xeloda on Tues. and Wed. I had my first Zometa (?) infusion.  I was a little depressed going back to the chemo chairs...I really thought I was ok.

Thanks

chris, a warning about your first zometa.  Some people (not everyone) get sick, sort of like a flu (on the first infusion ONLY).  It lasts a few days, you have a fever and feel icky.  This does not happen to everyone and is usually only the first time you get the infusion.  Don't ask me why that happens but I was one of the lucky ones that got the icky feeling.

Also, some people have alot of bone pain for a few days after the infusion, if you are one of those people then ask the onc to put in your order for the onc nurses to slow your drip down from 15 minutes to 30 minutes.

I learned both these tips the hard way 2 years ago when I started zometa.  Now it is a walk in the park, in fact about 6 to 8 months ago I had them put my infusion back to 15 minutes and have been fine with it. 

I hope all goes well and good luck with the 2nd & 3rd opinions!

Thanks so much LuAnnH.....I thought I was going crazy.  All that you described started last night.  I was chilling so bad I couldn't get warm.  And today, every bone in my body aches.

Thanks again

Bundle up, take some tylenol and wait it out.  This is normally a one time effect!