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Faslodex, 2nd Time Around - Failed Again

SIROD's picture
SIROD
Posts: 2132
Joined: Jun 2010

Yesterday, I had a ct scan due to more coughing, more SOB and this awful wheezing.  Today, I picked up the results.  Progression, a lot in the left lung, stable in other areas, and etc.

Faslodex, I began last March, 2nd time around.  Lasted longer than the first time around which was all of 7 months.  I was a lot more nervous the first time with it than I am now.  I never like failing anything!   Though it's not me that failed, it's those renegade cells that finaly figured the combination.  They had it all the time.  I would say they are slow combination pickers, wouldn't you?

Might ask to stay on Faslodex adding another hormonal.  Read that people do that.  I don't believe chemotherapy is for slower growing cancer cells.  It is suppose to kill fast growing cells.  Dr. Eric Winer and Dr. George Sledge both co-chair of SGK for scientific advisory board recommends to recycle hormonal drugs.  One spoke about at the 2011 SABC symposium.  I have heard Dr. Winer speak on YouTube and other places.  

Anyway, they are not my oncologist, so on the 18th, I will learn what mine has to say about it all.

In the meantime, my wheezing is driving me crazy.  Any remedies?  I believe it might be from the pleural thickening.  At least it wasn't an effusion.  I've been lucky in that department, I only had one when they found it had returned in 2008.  

Doris

New Flower
Posts: 3993
Joined: Aug 2009

Doris,

 I am sorry. I know your doctor suggested Xeloda, and you do not want to take Chemo because of you awful experience in 1994.

please five it a try. Please just try it for one month it is different from what you have known and might help you. 

Another option Afinitor

phase III clinical studies experimental drug BKM120

i am having difficulties typing here, this site still has not been working for me . Thank you for your note on Kari's obituary it means a lot to me. I am recovering from nasty flu was in bed for 5 days, my WBC dropped and my doctWillis going to move me on Faslodex in March. We are also looking at clinical trial I will let you know about what experimental drug she is considering.

 

 

 

 

SIROD's picture
SIROD
Posts: 2132
Joined: Jun 2010

Hi New Flower,

I hope that your bout with the flu is going away and that you will feel good soon.  I have heard that people who have this version even with a flu shot have suffered a lot with it. Cry

Xeloda is the pill form of the infusion drug call 5FU (Fluorouracil) which I took when I was diagnosed.  Back in 1994, we were given a choice of CMF (Cytoxin, Methotrexate and F5U),  CAF and in my case I was offered Taxol which was still in trial for breast cancer.  I went with CMF.  I take Methotrexate for uveitis and it has taken me five years to calm down the inflammatory cells in my eyes.  

My oncologist often has said it helps with the cancer.  I want to say, "say what?".  I leave it alone for if I went there, I would really get going.  In fact, I was on Methotrexate the year before the ct scan revealed my 3rd recurrence.   It really helped my cancer grow.  I had both lungs full of tumors, plus the pleura and a pleura effusion and I didn't see where Methotrexate helped my cancer at all excet to grow faster.  It didn't even help my eyes and I was taking an injection form of the drug.  I really have my doubts about Xeloda.  I never believed that CMF helped me  as the tumor began to grow .... in the axilla and then the ribs even while taking Tamoxifen.

My oncologist is my 2nd one and my file after 18 1/2 years of going to the Cancer Center is huge, so there is only a half file.  My oncologist probably doesn't even know I had 5FU as a drug.  So that is why I am very leery of it.

I won't do Taxol either, another suggestion as it often gives people tear duct problems.  I have a new tear duct and I don't want another one in the other eye.  I won't take it for that reason.  Plus the doc who did my DCR moved to another state and he was wonderful.

Don't know where I am headed but I do "thank you" for responding to my post and I do wish you the best on Faslodex.  It is a very good drug and many women have years on it. Smile

Keep me posted if you try a trial drug.

Stay well too,

Doris

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

Doris,   I always learn something from your posts, thank you for that.

I am so sorry to learn about progression for you.  I don't have any advice, but I'm sure you will make the right decision, as you are wise and do a huge amount of research.  Best wishes.  Please let us know what you decide.

Hugs,

Linda

SIROD's picture
SIROD
Posts: 2132
Joined: Jun 2010

Thank you Linda.  I am not certain that I know what I'm doing but I just do it.  Today, I went and had my Faslodex treatment that had been set up since my last appointment last month.

Reasons, not counting insanity:  

Some of tumors are stable so something must be working and if I had kept the original date they gave me I would not have known of the progression.  rest are stable so half of it continues to work to keep those other tumors stable.

I wanted to know what is available for this irritating wheezing that I have all the time.  I learn what it is and will be asking my primary care for something like it if it isn't suitable.  I have so many prescriptions now, what's another one?  The wheezing is coming from the thickening pleura which is no longer flexiable but is becoming rigid.  I read some online and the oncology nurse told me the same.

Now what is the easiest chemo, excluding Xeloda? One that didn't require nausea meds as none work for me and I have tried them all at one time or another.  Trying to figure out where I might be going next.

Doris

 

 

CypressCynthia's picture
CypressCynthia
Posts: 3956
Joined: Oct 2009

I am so, so sorry to hear all of this.  You have been so courageous in your battle and are always here for others.  I hate this disease!

One thought popped into my head about the wheezing.  I am sure that you have tried inhaled steroids and various forms of albuterol, but have you tried an inhaler with ipratropium bromide (such as combivent)?  It works a little differently and was recommended in my pharmacology class for chronic obstructive pulmonary disaese (COPD).

"Ipratropium works in the lungs, where it blocks receptors called muscarinic receptors that are found on the muscle surrounding the airways. A natural chemical called acetylcholine normally acts on these receptors, causing the muscle in the airways to contract and the airways to narrow.

Ipratropium blocks the muscarinic receptors in the lungs and therefore stops the action of acetylcholine on them. This allows the muscle around the airways to relax and the airways to open. This makes it easier for people with asthma or COPD to breathe."

 http://www.netdoctor.co.uk/allergy-and-asthma/medicines/atrovent.html#ixzz2KMhsrVzq

Danny has mild COPD from years of asthma (non-smoker).  He finds it really helps.  I don't know if it would help you.  Sending big hugs and prayers your way!

 

 

SIROD's picture
SIROD
Posts: 2132
Joined: Jun 2010

Thank you CC.  I am so tired of listening to myself wheezing.  It's a bummer when your trying to read and in the morning when I am trying to catch 10 more minutes of snooze time.  It won't let me with it's noise.  Up until yesterday, I only suspected where the problem was located.  The oncology nurse stated her beliefs and they were similar to mine and what I had found on the web.

I did ask the nurse yesterday what product would I use.   She did give a name also.  Now I have two to bring to my primary care doctor this week.  She takes care of all my 23 prescriptions.  I can't take anything without running it by her.  She has some sort of device that gives interaction with other drugs, side effects and etc..  

I am sorry that your husband had COPD.  One of the very young teacher's at work was diagnose with it also and she never smoked either.  I am familiar with COPD as when I began to have a dry cough back in 2007, I had wondered if I might have that condition.  I had read some article on it and then I looked it up.  Of course, I was in total denial for a return of cancer.  I didn't want it back and pushed it as far back in my brain as I could.  Every now and then, it would come to the front and I would shake my head and say, no, it's not that again.  I wanted to be that 1% that I read about in Dr. Love's Breast book.  Then the nurse that runs Johns Hopkins BC mets question web page asked me if I knew what Dr. Love's source was.  Like I knew and she didn't cite them in her book either.  However, I have recently read that there is such a thing of 1% that might escape.  I believe it was on METAvivor.  

Thank you again for the information.

Doris

CypressCynthia's picture
CypressCynthia
Posts: 3956
Joined: Oct 2009

Epocrates has a "multi-check drug interaction checker."  It is very useful if you are on a bunch of meds.  You add all of your meds to a table and then all of the possible interactions between the meds show up.  It is expensive though and costs $99/year.  Very helpful though.  They may have a less expensive app but I am not sure?

SIROD's picture
SIROD
Posts: 2132
Joined: Jun 2010

That is great to know that there is something available to check out prescription drugs with possible interaction for those of us not in the medical field.

Since I am at the point of retiring and trying to keep every penny I earn, I probably won't buy the device.  This will leave for my wonderful primary care doctor to do.  I do have a great relationship with this doctor.

Am in a middle of the Northeaster that has and is hitting the northeast with so much fury.  My job is to keep the area around the doorway clean of snow so I can get out if need be.  Otherwise the snow will mount up and the doors won't open.  I can't shovel any more due to my chronic bursitis and the rotator cuff  (full thickness tear in the supraspinatus tendon).  I try not to make things worse for myself.  I do hate storms like this it reminds me that I am no longer the person who could do anything I wanted to do.  I am at the mercy of others to do it for me.  It is so irritating.  I am just hoping we don't loose power which reminds me that we are all at the total mercy of an electrical umbilical wire.

Thanks again,

Doris

 

 

VickiSam's picture
VickiSam
Posts: 8255
Joined: Aug 2009

for the independence you've once had, is now lost.  Damn beast.  I cry. at the thought that you have to try another mixture of drugs, to keep the beast at bay.  I cry, as I envision you trying to keep your door way free of snow, and mud.

I hate that there is another -- stumbling stone on your path of stability.  I wish I lived close enough to give you a HUGE hug, and help with clearing a  pathway to your car.Cool

I am amaze by all that you DO, have ACCOMPLISHED, and STRIVE for in the name of Breast Cancer.

Continued success, quality, and resolve for a better tomorrow.Innocent

Gentle hugs my Friend   ...

Vicki Sam

 

 

SIROD's picture
SIROD
Posts: 2132
Joined: Jun 2010

Dear Vicki,

 

Thank you for the hugs.   It was hard to realize that I really can't do it all anymore.  For the past 2 years, the snow allowed me to use a broom to remove the accumulation  by my doorways.  Yesterday, the snow required a shovel.  I shouldn't have picked one up for I paid the rest of the day for it.   I have to start thinking before just believe I can, I can, I can.

 

Doris

 

PS:  I think I in the northern land was also having a case of cabin fever, winter blahs  setting in.  

 

CypressCynthia's picture
CypressCynthia
Posts: 3956
Joined: Oct 2009

I am so very sorry to hear of this!  I doubt I could help much with shoveling, but we could hole up and have beignets and cafe au lait ;-). 

I have never really experienced snow.  Cold exacerbates Danny's asthma, so we avoid it. 

We have a different problem with grass, weeds and generally jungle-type of vegetation taking over in the blink of an eye, because of the humidity, rain and long growing season.  I finally hired a gardener to mow and edge.  That way Danny and I can concentrate more on the planting and weeding.  Even that is getting too much as we are on 3/4 acre.  We often talk about moving somewhere smaller with less maintenance, but I think inertia has set in...lol.

We are both such independent women--I know this is awful for you!  But we have to learn to bite the bullet and ask for help and, when I say this, I am preaching to myself as much as I am you!

Recently, I was waiting in the OR to care for a high risk baby.  The mother was morbidly obese and the nurses asked me to help move her.  It absolutely killed me to say no, but, with the bone graft in my back (20 lb weight limit) and the pain in my ribs, I just said, "I am so sorry.  I will call for someone else but I have a bone graft, etc."  The anesthesiologist was a sweetie about it, but I did get a look from one nurse.  It is so very hard to admit that I can't do it.  It just killed me!

Anyway, I am sending extra hugs and prayers and begging you to ask for help!  Do not hurt yourself with that snow.  We are private people, but sometimes you have to let others know so they can help out and be there.  I know you would be there for them!!!

 

SIROD's picture
SIROD
Posts: 2132
Joined: Jun 2010

Dear CC,

 

I do know that I have to learn my limitations and not continue to keep on pushing it.   My son did give me hell about using a shovel.  He had planned on shoveling and the area I tackled was not worth my re-injuring myself.  I had to agree.

 

I use to be a very good gardener until my 2nd hernia surgery.  The surgeon told me that there wasn't much left to work with and he would never do me a third time.   Doubted that anyone else would either.  That is when I stop gardening.  I do still have my few small beds of flowers at home but never again was I able to do what I so loved and enjoyed.  I didn't want to return to the OR without my best surgeon. I didn't only do my own gardens, I did those of our local historical home.  

 

Have learned at work to ask for help.  I will ask a student if he/she couldn't grab this or that and they are always willing and helpful.  If there is to much mail, I have asked who ever is nearby, will you help me and people are very compliant.  

 

Adjusting is hard  for all of us.   I have often walked faster to open a door for a handicap student who will turn to me and say, "I can do it" and I'll reply, "I know you can but I do have one hand free" while one hand is holding on to my cane. 

 

Lets hope that nurse that gave you a look never has to learn from experience what it is like.

 

Best to you and I would have love to share a cup of cafe au lair with you.

 

Best, 

 

Doris

 

 

camul's picture
camul
Posts: 2043
Joined: Dec 2010

I am so sorry that you have to go through this.  I was given a 26 day build up/ease off dose of steroids for wheezing in November.  Mine was from an allergic reaction to Afinator.  I too am leary of taking Xoleda.  I know it has worked for some, however, after the Afinator and how my body reacted to Erubulin at the end, I can't bring myself to take it.  The risks exceeded the expected benefits at this point, and my onco agrees that the Herceptin/Xgeva and Evista seem to be working as well as anything else has,  so I do understand your reasoning. 

It still does not make it any easier.  I am sure that you have researched all there is on it and what ever decision you make will not be done lightly.  I just hate this whole thing, especially having to depend on others for things that you have always been able to do.  This disease does suck and I am always amazed at your positive attitude.  Is there any way that you can get in earlier than the 18th?  

Hugs and prayers,

Carol

SIROD's picture
SIROD
Posts: 2132
Joined: Jun 2010

Dear Carol,

 

I have an appointment with my primary care doctor on Wednesday.  She is the one that writes all the prescription except if I need a cancer script, the oncologist does those only.   It is easier for me to go pick it up a prescription at her office than with my oncologist who is 1 hour drive away from me.  My PC doc will prescribe something for this wheezing.  Two more days of this noise; it is enough to drive one crazy.

 

I am thinking of some of the possibilities, I still like to keep Faslodex, maybe either add Afinitor or Aromasin.  Though I do think it's to soon for an aromatase inhibitors.  I don't think those renegade cells forget how do deactivate a drug that quickly.   I did have another year, more or less on Faslodex.  I think of it as "buying time" for that is what stage IV is doing.  

 

Not certain why you could not email me.  I read this on another post.  I never block anyone, I don't believe in it.  We all have opinions and they are never any wrong or right opinions, so my email has never been blocked.  I did go in to see if somehow I hit the wrong button but couldn't find that I did.

 

Try it again, let me know.

 

Thank you for the encouragement.

 

Best to you,

 

Doris

muffingranma
Posts: 107
Joined: Sep 2012

Hi I am new to this site compared to most. I have Angiosarcoma cancer. I had b.c. in 2006. All went well  till August 2012 when I  had cancer again. A rare cancer that only affects one percent in the nation. It is radiation cancer of the blood cells caused from the radiation I took for my breast cancer in 2006. I have had the cancer come back 4 times sense Aug. of 2012. No treatment works against this cancer it may prolong it. I had a mastectomy Nov. 2012. I will have surgery for the new cancer the 15th of Feb. I also have COPD and use oxygen 24 hours a day. I use combuvent,  spelling may be wrong on these. I use  advair disc's also plus a lot of other ones they may help with your wheezing. I pray you find something that works for you. I can't take chemo. because of my lungs, so I will do  radiation. I am not looking forward to it, but my doctor say's it the best chance to keep it away for a while. best of luck hope everything goes in your favor 

SIROD's picture
SIROD
Posts: 2132
Joined: Jun 2010

Dear Muffingranma,

 

I will send all positive thoughts your way that your surgery will go smoothly on Friday.  Your plate is so very full.  I have found that surgeons often tell us the worse scenario.  Then if it turns out to be the worst, we won't be mad and if turns out not to be not as bad as expected, we think they walk on water.  This is my take on surgeons after 20 surgeries.  

 

Thank you for the names of the products you use.  Last week, I didn't know what there was out there to use, now I have several products to offer my primary doctor.

 

You are a strong woman, and I do hope you will do ok.

 

Keep me posted, I want to know how it all goes for you.

 

My very best to you,

 

Doris

 

 

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