Knocked down again

HollyTraci

It's been a while since I posted. Kept waiting on good news from scans. Bad news came instead. After three months of Taxol and aredia, no improvement was seen. If anything, things looked worse. In case you have forgotten, I was a Breast Cancer surviver for nearly 5 years and it came back in Feb. in the bones with swollen nodes, glands, etc. in variarous places.

My Oncologist is now trying Gemzar, Carboplatin, Herceptin, and Aredia. I will be treated everyother week with blood work done on alternate weeks. I am taking a long lasting oxycotin, one every 12 hours and oxzcodone every three hours, if needed. These make me extremely nauseated and I have lost my desire for food of any kind.

Just wondering if anyone else has tried this combination of drugs. I'm really scared now. I feel like I wasted three months on Taxol and the cancer now has to strong a hold to let go.

Best wishes and love to all.

Jane

judiek

Jane,

I'm so sorry that taxol didn't work for you...we are all so different. I have heard very good things about your new treatment plan. I wish you all the best and keep us posted. Here are a couple other links that may help you, lots of women with mets that could probably help.

Warmly,

Judie

Discovered lump Sept Di2002 (mammo didn't pick it up after I found it) Scary!
Dx Oct 2002-just turned 41
IDC, Stage 2b, grade 3/3-very aggressive
3cm, lumpectomy, clean margins
er/pr positive, her2 neg
2/25 nodes with cancer
Nov 2002-March 2003 -FEC (Flourorical, Epirubicin, Cytoxen)
March 2003 started tamoxifen
May 2003 finished rads (33 tx)
June 2003 ct/pet scan-clean
Did 3 month check ups/lab work
Dec 2003 complete hysterectomy
Jan 2004 extensive mets to both lungs and liver/labs normal
Jan 2004Stopped tamoxifen
Feb to Current- clinical trial of avastin and taxol
Apr 2004-CT -significant shrinkage on all tumors/pleural effusion gone
June 2004-CT -all liver lesions decreased in size/ lung mets vanished.


http://www.bcmets.org/

http://bcsupport.org/

http://boards.breastcancer.org/cgi-bin/cgi/ubbcgi/ultimatebb.cgi

bunnie

Hi holly i know how you fell i was dignosed with breast cancer in 02 had mastecomy did chemo and then after i got off chemo seven months later cancer came back.it is in the lung and ribs right know we tried taxater first and it didnt do much in fact some of the turmors actually grew i am kmow doing taxol and gemzar hoping this works but i keep wondering if iam doing this one for noithing also it is real dissapiniting when you do a treatment and it hasnt helped.Try and stay postive though that is what iam trying to do even though it is hard at times.keep us posted and best of luck.bunnie.

DeeNY711

Even though the news was not good, it might have been far worse in the absence of taxol and aredia. A true waste of 3 months would have been not doing anything. Right now, you know where you stand and you have options available to you. It is not uncommon to require a period of time to customize what works for you. Focus on the fact that with all of the treatments now available, and all of the treatments in clinical trials at present, you will continue to reap the benefit of options until they figure out how to control what is happening. All of us know that sense of stark terror. It is very difficult ground, but distraction can be the key to keeping your mind in a good place for a large part of the day. Please know everyone will keep you close to heart.
Love,
Denise

jeancmici

I have some idea how you are feeling - you have not heard from me in direct email for awhile because I am not much for lifting spirits fighting my own demons at this end.

However, want to post a few commments for others to read and further comment if they want to and will email you soon directly.

I was not aware that you were HER2neu - if so, surprised that herceptin was not used earlier. Did you have MUGA scan or echocardiogram to check heart before herceptin. As I posted, i didn't and got damaged heart before I had to quit it.

Also are you estrogen positive - I have forgotten - if so, I am wondering why Aromasin or Femara was not tried first for the bones etc. I know of a woman - friend's daughter's mother-in-law who had return only in bones and has been on Aromasin successfully for some time now - maybe several years(?)

I note that both you and I started out liking Darvocet and then went to Oxycodone. Darvocet became useless. Sometimes I do a switch in the afternoon and take Percocet which seems to give me a bit of an 'oomph' for a few hours.

Trying to recall about the pain. Seems the original back pain which was awful and finally led me to the bone scan had me feeling I was in an unbendable vise - could hardly take something off the lower shelf of the fridge. After Zometa moved to every 3 weeks from 4, I noticed some improvement in flexibility and now it seems normal with less intense pain. Bones progressed to MANY areas , then last scan showed stable condition - that was April when I was still on Herceptin and Navelbine.

Wondering why your doctor has not switched to zometa which most people I know of are on and research shows it appears to have the edge in effectiveness. AAAgh! I do not want to give you something else to worry about.

You, me, Bunnie and Judiek are in the same boat hoping we can keep rowing for some time in the future.

My goal with this message was to allay your fears somewhat - hope I helped even a wee bit.

Sometimes I find just a response from forum members is a comfort knowing they are keeping me in mind and in prayers.

Love, Jean

jeancmici

DeeNY711 said:

Even though the news was not good, it might have been far worse in the absence of taxol and aredia. A true waste of 3 months would have been not doing anything. Right now, you know where you stand and you have options available to you. It is not uncommon to require a period of time to customize what works for you. Focus on the fact that with all of the treatments now available, and all of the treatments in clinical trials at present, you will continue to reap the benefit of options until they figure out how to control what is happening. All of us know that sense of stark terror. It is very difficult ground, but distraction can be the key to keeping your mind in a good place for a large part of the day. Please know everyone will keep you close to heart.
Love,
Denise

Denise!
What are you and I doing on the computer at this time of night/morning? :-)

You message to Jane came thru as I was writing mine and I know it will give her more to hold on to than mine, but I tried.

I always appreciate your responses even tho' I do not usually respond back individually - and you have the credentials of RN so we know you know what you are talking about.

Time for some shut-eyes- yes?
Jean

hummingbyrd

DeeNY711 said:

Even though the news was not good, it might have been far worse in the absence of taxol and aredia. A true waste of 3 months would have been not doing anything. Right now, you know where you stand and you have options available to you. It is not uncommon to require a period of time to customize what works for you. Focus on the fact that with all of the treatments now available, and all of the treatments in clinical trials at present, you will continue to reap the benefit of options until they figure out how to control what is happening. All of us know that sense of stark terror. It is very difficult ground, but distraction can be the key to keeping your mind in a good place for a large part of the day. Please know everyone will keep you close to heart.
Love,
Denise

HT (((HUGS))) to you dear, not out of concern, but to reassure you everything will be fine. Don't let fear get you girl, it can be our greatest enemy!
Have you thought about looking into a place that treats the whole body? Like Cancer Centers of America?
I tell you truly chemo scares me. I've had bone mets since 8/01 treated with radiation, herceptin and zometa...but no more chemo. That's just my personal choice, logically it makes no sense to me to poisen the body...it just seems like a crap shoot to see what will survive; the body or the cancer. Course I took 4 AC and 4 Taxol initially, and without it...who know's I may not be here today. I do know the AC almost killed me, I finished chemo 4/01 and looking back on x-ray bone met was in arm 5/01.
Mets are active again as of 11/03 and I've got a lymph node under my jaw that swells at night and goes down during day. Studies show body cleanses itself at night, so is my body working on the cancer? Don't know...do know I'm improving my diet, increasing water intake, resting as needed, exercising and doing a lot of praising to God for each day!
God bless you dear. Prayers are with you for wisdom and healing.
Luv, hummingbyrd

EllenM6246

Hi Jane, I am sorry to hear of your new difficulty. I too have mets to the bone and am currently hanging on to treatment with Zometa, Faslodex and Aromasin. I don't believe you have wasted 3 months, I agree with Denise, to do nothing would be the true waste. I am due for more scans at the end of next month and I am keeping all body parts crossed!! I take Tylox (the red capsule) when the going gets rough and have found it doesn't make me nauseated the way some of the tablet forms did. Unfortunately I have not lost my appetite but have gained 32 pounds which I am trying desperately to lose. (I was already overweight.) Don't let this get you down. I truly believe a positive attitude and optimism go a long way in the healing process. We have a dreadful disease but I refuse to let it do me in. I will keep you in my thoughts and prayers. Hang in there, you are a survivor. Ellen

jeancmici

EllenM6246 said:

Hi Jane, I am sorry to hear of your new difficulty. I too have mets to the bone and am currently hanging on to treatment with Zometa, Faslodex and Aromasin. I don't believe you have wasted 3 months, I agree with Denise, to do nothing would be the true waste. I am due for more scans at the end of next month and I am keeping all body parts crossed!! I take Tylox (the red capsule) when the going gets rough and have found it doesn't make me nauseated the way some of the tablet forms did. Unfortunately I have not lost my appetite but have gained 32 pounds which I am trying desperately to lose. (I was already overweight.) Don't let this get you down. I truly believe a positive attitude and optimism go a long way in the healing process. We have a dreadful disease but I refuse to let it do me in. I will keep you in my thoughts and prayers. Hang in there, you are a survivor. Ellen

To Ellen,
Gaining weight and having an appetite are good. I have lost 43 pounds since last August, but I have lung and liver mets plus bone. Be glad for the appetite.

EllenM6246

jeancmici said:

To Ellen,
Gaining weight and having an appetite are good. I have lost 43 pounds since last August, but I have lung and liver mets plus bone. Be glad for the appetite.

I am glad for the appetite most of the time but I am now 82 pounds overweight and I don't like it. But as you imply, it isn't the worst thing in the world!! I just continue to try to eat healthy foods...but even apples in quantity make you gain weight!! Actually it's the pasta craving I struggle with. Thanks, Ellen

bettygee

Hi, Jane, I had just sent you a e-mail when I saw your posting. I can't be much help as far as the drugs since I have not had that combo. I did, however, have oxycodone for pain and found it made me ill. One thing have tried with drugs that have that effect is to eat a couple of saltines just before taking the med. It is probably more difficult if you have no appetite, but they are small so you might be able to give it a try.
Thinking of you with love, Betty

DeeNY711

jeancmici said:

I have some idea how you are feeling - you have not heard from me in direct email for awhile because I am not much for lifting spirits fighting my own demons at this end.

However, want to post a few commments for others to read and further comment if they want to and will email you soon directly.

I was not aware that you were HER2neu - if so, surprised that herceptin was not used earlier. Did you have MUGA scan or echocardiogram to check heart before herceptin. As I posted, i didn't and got damaged heart before I had to quit it.

Also are you estrogen positive - I have forgotten - if so, I am wondering why Aromasin or Femara was not tried first for the bones etc. I know of a woman - friend's daughter's mother-in-law who had return only in bones and has been on Aromasin successfully for some time now - maybe several years(?)

I note that both you and I started out liking Darvocet and then went to Oxycodone. Darvocet became useless. Sometimes I do a switch in the afternoon and take Percocet which seems to give me a bit of an 'oomph' for a few hours.

Trying to recall about the pain. Seems the original back pain which was awful and finally led me to the bone scan had me feeling I was in an unbendable vise - could hardly take something off the lower shelf of the fridge. After Zometa moved to every 3 weeks from 4, I noticed some improvement in flexibility and now it seems normal with less intense pain. Bones progressed to MANY areas , then last scan showed stable condition - that was April when I was still on Herceptin and Navelbine.

Wondering why your doctor has not switched to zometa which most people I know of are on and research shows it appears to have the edge in effectiveness. AAAgh! I do not want to give you something else to worry about.

You, me, Bunnie and Judiek are in the same boat hoping we can keep rowing for some time in the future.

My goal with this message was to allay your fears somewhat - hope I helped even a wee bit.

Sometimes I find just a response from forum members is a comfort knowing they are keeping me in mind and in prayers.

Love, Jean

It always lifts my spirits when I see a message on the board posted by you, Jean! Had a good giggle over the two of us tapping out messages on our computers in the wee hours. I think my inner time clock was permanently broken when I worked the night shift for several years. Loved it, though! Could do everything exactly right and listen to favorite radio station simultaneously. Then, too, I think it is only possibly to fully relax now and fall into blissful sleep once the sun has announced that I've made it safely into the next day.