not good news
 

My oncologist just called me at home. As soon as I heard his voice I knew it wasn't good. My ca2729 that I had drawn earlier this week is now up to 2323. That's over a 500 point jump from last month. It's been climbing steadily since last summer and nothing has been able to slow it down.

He said he is going to add xeloda to my treatment and wanted to get that prescription called in right away. So I'll be on herceptin, tykerb, aromasin, zometa and now xeloda.

I was on xeloda in the past - for over 3 years and did really well on it as far as it keeping the cancer stable for that long. However, the chemos I've repeated so far have not worked so I'm afraid that xeloda won't be effective for me either the 2nd time around.

When I was xeloda before I felt very well physically, but I have severe and constant trouble with hand/feet syndrome - burning, splitting, cracking, bleeding. I don't look forward to that, but am obviously willing to deal with it as long as it will push back the cancer.

I'm feeling kind of numb right now at the news kn owing that I have to shift again and that the cancer is running uncontrolled. I feel like I'm in a real downward trend here. I hate the disease, the terror it causes and the loss of so many lives cut short by this devil.

Re: not good news
 

I am so sorry Pam. I hate this terrible disease and what it does to our spirit. Please hang it there...my prayers are always with you.

hugs,
shobha

Re: not good news
 

There is a link here somewhere on this but I did save a post I had on Xeloda side effects:


my mom was on this and she did have the hand foot syndrome briefly. With mom, it started with the dark/red look, progressed to feeling warm, then became a problem. Basically, the Xeloda has a way of leaking into healthy tissues and goes to the extremities.

Things that seem to help:

Udder Cream (available at Wal-Mart) Note: apply liberally but GENTLY. Vigorous rubbing can aggravate things. Apply a few times throughout day. Good to goop it on at night and wear cotton socks or gloves to keep it there.

B6 supplement, 200mg/day
" The addition of pyridoxine (200 mg/day) for ameliorating the symptoms of CAP-induced HFS allows for the administration of higher doses of CAP"

Topical Henna, purchase here: www.castleart.com
discussed here: http://xelodasideeffects.blogspot.com/
Interesting anecdote: "Henna is a natural antiseptic and the chemical in henna fills the skin cell thus it can keep hands from cracking . Field workers in India would dig small recesses in the dirt fill with henna & water ans dip their hands & feet in the mix to help prevent the skin from cracking and keep other nasty bacteria away."

Mom also used generic neosporin from Walgreens for splits.

Staying off feet as much as possible until things calm down may help.

I would suggest trying all the above before approaching docs since they may only offer dose reduction or longer breaks. There is suggestion that a "metronomic" (low-dose without breaks) might be better in the long run since it gives cancer less opportunity to recover.

There are examples of patients successfully revisting previously "failed" xeloda (and other chemos) in metronomic fashion. i.e., it might be a failed delivery approach.

Taking more of the daily dose at night is thought to be less toxic and more effective as well. I can provide articles on these issues if desired.

Re: not good news
 

Dont know if I put my message in right place, I put it on newcomers. Anyway I am fifteen years in , and was really at the door (deaths).
Remind yourself, how many times in the past have you thought "this is it", it wasn't !!! this is just another set-back and you are no stranger to it.
Try to draw on your experience, you have probably envisaged the "end" countless times, but it wasn't !!
This is such a unique disease, no-one, knows what route it will take.In my journey I have seen the worst cases survive and the best fail.
I know a young woman who is triple neg, nothing to give her, she is still going against all predictions.
Have you not tried tykerb?
kind regards x

Re: not good news
 

Sorry to hear this Pam. It sounds like your onc. has a good strategy and I know you will fight being the Warrior Woman that you are.

I will be praying for you.

all the best
caya

Re: not good news
 

Sorry,... you are ,on tykerb, the oncs here feel you have to be on a treatment 8 weeks before it can be assessed.
I progresed on herceptin initially, it seemed to take a while to kick in, maybe same with tykerb

Re: not good news
 

Re: not good news
 

Crap, I am so sorry Pam. Xeloda may be the ticket. I don't know any thing about how much or how offten, but I am glad you are going to give it a shot. I have heard good things about Henna.I hope you can try some of those thing Rich talks about. Let us know if it helps you. You are always in my thoughts and prayers.

Love, Alice

Re: not good news
 

Debbie,
I absolutely agree in terms of potential benefits of a more metronomic, more frequent lower dose strategy. I mention that in the post. That seems especially worthy of consideration with Tykerb in the mix. I just meant that based on numerous postings on various boards, patients often don't get advice on how to manage the side effects...just have their dose reduced when they occur, which often means stopping altogether for a bit. If it's a conscious decision to pursue a schedule for efficacy, that's one thing. If they're needlessly altering the schedule when some relatively simple side effect controls can be used, that seems lame.
In my mom's case, I brought information on how to deal with the side effects thinking the NP would be all over them. She quickly glanced at it, said "Oh, this looks good" and handed it back.
To me, another example of pharma only mindset.

But Pam, it seems encouraging that your onc is going full bore on multiple pathways.
Have you brought up the issue of chemosensitivity testing?

Re: not good news
 

Dear Pam,
I am so sorry to hear about this setback. Emotionally processing bad news and then developing next steps has to be one of the most challenging moments in this frustrating, exhausting battle against cancer. But.....trooper you are. There are many more drugs available in addition to the ones you've tried.

JML (?) indicated that Ixempra is working for her....TDM-1 is waiting in the wings. There are clinical trials. Please don't limit the opportunities.

In the meantime....sounds like you have a plan which is huge. I am sure you will get back on track and can build that arsenol again.

Lots and Lots of love coming your way.

Re: not good news
 

pam,
well that sucks. but given that there is no true "chemo" in your recent regimen, it may be good to add the xeloda. You did well with it before and it has been a while; I pray that those dumb cancer cells will have forgotten how to get around that one.

Too many setbacks, you deserve a break here.

Much love
Chris

Re: not good news
 

I am so sorry to read your news Pam. Please try your best to keep going. Keep pushing the doctor for more ideas. I have my fingers crossed for you.

Re: not good news
 

Whatever it takes to get you back on track! I'm so sorry to hear that you have such a battle before you, but you have my prayers and belief. Much love, Pam. ma

Re: not good news
 

Thank you everyone for your kindness and support. I can't tell you how much you all mean to me.

Rich - thanks for the suggestions.
Udder cream - I used that before and didn't find it really helpful. I started using a cream called dermaltherapy that my docs office had samples of to give. They no longer have the samples but I can order it online at dermaltherapy.com. The cream has 25% urea. Urea I think is the key, it allows it to break down the thick dry skin cells.

I will get some b6 supplement right away.

Thanks for the links on the henna. Sounds like a messy process to apply. I knew nothing about henna - and read that not all hennas are equally effective. I'll see what I can find locally and get some right away or order on line.

Re: not good news
 

One thing that was counter-intuitive is that aggressively rubbing the moisturizer in can aggravate the HFS.

Re: not good news
 

Pam P

Do not prejudge whether something that stopped working for you before or didn't work for you before won't work now AS

1) It depends on what other medications you are on ie, which other "potential escape pathways" are blocked

2) It depends on how your mets have "mutated" or which of the surviving subclones has turned into the new "weeds" ie, that group which is best able to reproduce despite the use of the altest "weedkiller"

Best of luck

Re: not good news
 

Pam,

I am sorry to hear your markers have risen. Hope you are feeling better today.

Amelia

Re: not good news
 

Dear Pam

I know you are frustrated and disheartened with cancer but you are a fighter and I know you will continue the battle. Xeloda did well for you once before and it will again. Chrisy's comment that you have only been on targeted therapies so far with no chemo is important. Adding something back in WILL do good.

Everytime you hit cancer with a drug, it changes the cancer so things that stopped working can work again and things that didn't work before might work now.

Big hug to you friend.

Sending hugs & encouragement Re: not good news
 

Oh Pam,
I'm so sorry. I'm so sorry for how discouraged you must
feel right now, how frightened, and frustrated!
Please hang in there, keep the faith.
You have a new treatment plan & once you step onto that
path and see that there are still options that can work for you
you'll find your optimism again.

Don't forget about Ixempra/Herceptin as an option in your arsenal. After 2 cycles (3 weeks on/1 week off)the 4cm soft tissue met by my bellybutton that was so easily palpable, as well as deeper mets in the nodes in my belly, are barely distinguishable now. It has been a tough treatment, but it's working, and this 2nd cycle has actually been more tolerable as the disease has shrunk.

I'm crossing fingers & hearts that you respond to the new combo as quickly.

Sending hugs~

Jessica

Re: not good news
 

Pam
I am so sorry that this is still not enough punch...hoping the Xeloda will be the extra added kick...i wondered when the Herceptin Tykerb didnt do it for me if adding some chemo would have helped, but then my muga dropped so much....just got the report last week on my CT and the Avastin Herceptin isnt helping either...my pleural effusion increased and now they are deciding after yet another echo on whether to do a pericardiocentisis, which requires a few days in the hospital...so until decisions are made, I am off chemo, and waiting to see whats next.....
I feel your exasperation....wishing we could get a break already....praying for your miracle...and mine Pam....
you are always in my thoughts...stay strong, our day will come!

Re: not good news
 

I'm sorry for your news Pam, but hope the xeloda will push those numbers down for you as it did before:)

Re: not good news
 

Pam,

You are so often on my mind and in my prayers. I am sorry you got that news. You are a WARRIOR! This will be the magic combo. Kick this cancer's rear back into NED land.

I am here cheering you on!!

Love,
Maureen

Re: not good news
 

Pam keeping you in my prayers and hoping the new regimen will get those markers down!
Hugs,Marcia

Re: not good news
 

Pam,

I wish I could say something that would make this all go away. All I want to say is that you are an amazing woman and I know you will push through this too! Sending you a big hug and praying for better news to come!

Re: not good news
 

Pam
Sending you strength to go through all these treatments
and prayers that they will send you numbers down this
time.
patb

Re: not good news
 

Pam,
I can only imagine the fear, frustration and all the other emotions you are dealing with right now. My heart goes out to you. I really think that adding chemo into the mix might be the magic bullet to knock those markers back down. Just know that I will be keeping you in my thoughts and prayers for a good response. Sending you a really big hug, & wishing I could do so much more.

Chelee

Re: not good news
 

Sending you love and prayers Pam.

Re: not good news
 

Hi Pam,

I am sorry to hear your news but I think I can relate a bit. I just spent a few weeks feeling really down and depressed about the failure of TDM1. It is such a loss when a treatment begins to fail or fails all together. We are pushed off of the ledge and on to the unknown... again and again. It seems like we are either trending in the right direction or the wrong direction, over and over again... but it never gets any easier.

I hope that you find Xeloda to be easier for you this time and I am going to take your tip on the hand and foot stuff you mention. I just started Doxil on Friday and I understand I may need all the help I can get with HF.

You are in my thoughts and prayers.

Love, Hope, Peace, Carolyn

Re: not good news
 

Pam, I hope all goes well with you with xeloda in the mix. I also had terrible hands while I was on that with Tykerb. You really have to take every precaution so you don't get it or keep it to a minimal. No pressure, rubbing, hot water, harsh soaps. I'm sure you know the ropes. It's so hard to deal with all the side effects, physically and mentally. Stay strong. Sally

Re: not good news
 

You have my thoughts and prayers, Pam!

Re: not good news
 

Good Morning Pam....Praying for you this morning.......asking God to be with you and help you as you deal with this road block along your journey. Praying that the new drug does the trick and that His peace surrounds you and holds you close. Also asking Him to not allow the side effects you experienced previously! Sending love and hugs to you friend.

Mary Jo

Re: not good news
 

Thank you all for your good thoughts and prayers --- they mean so much. I'm waiting to get my xeloda through mail order pharmacy that's how I have to do it with my insurance. Maybe by mid week it will be here..... then here I go hopefully smashing c cells into oblivion.

Re: not good news
 

Yeah! Smash those c cells into oblivion!

Re: not good news
 

I'm glad you're feeling well - and that waiting a few extra days will just give you extra energy. Hoping this will turn things back in the right direction and sending gentle hugs.

Chris

Re: not good news
 

Pam,

I'm praying that the Xeloda kicks in like before to bring down the markers to normal.

Joan

Re: not good news
 

Also praying that xeloda does a good job for you and that the side effects are minimal. I think of you every day and will continue to send you positive thoughts
Hugs
Ellie

Re: not good news
 

Dear Pam -
I can see that you have a lot of fight left in you, and you are prepared for the Xeloda when it arrives.

Ask your body to 100% accept the drug and all it can do against the cancer. This is also my prayer for you.

Re: not good news
 

Pam -
I would strongly recommend you buy one of my favorite books and it comes with a CD to overview the book - so you can just pop it into the CD player (even in the car!) but it really helped me understand how we need to give our bodies the right food when taking our drug cocktails. It is a fabulous book - easy to understand with many really great recommendations and also combinations to help those on chemo deal and still give their bodies what they are craving. It really helped me and I am digesting the "core" of the book now reading daily on it. (I've listened to the CD probably 6 times!)

Also sending you some websites and other books - but this one is a good starter I think for you.


Few of my favorite sites with loads of information:

http://www.i-amperfectlyhealthy.com/index.html
http://www.cancerfightingstrategies.com/index.html
http://www.carcinomacancer.org/cance...ph-factor.html
www.drday.com
http://www.cancerrd.com/
www.livingfoodsinstitute.com
http://cancermonitor.blogspot.com/20...reatments.html
http://www.creativehealthinstitute.com/wheat_grass.htm
http://www.healthquarters.org/
www.gerson.org

Favorite Books: (note I bought all these 1/2 price - or discounted from Amazon.com --- and then friends and family brought them to me in Italy!)

The "Cancer Battle Plan Sourcebook" (this is the updated version he has two Cancer Battleplans so make sure you get the SOURCEBOOK) by David Frahm
Crazy Sexy Cancer Survivor – by Kris Carr (this will make you laugh and even cry but I love her sassy attitude and her overall approach to fighting cancer moving forward!)
Beating Cancer with Nutrition – by Patrick Quillin PhD, RD, CNS (also comes with a great CD - overview of his book that is great for the car or to get a feel for the book in general)
Eat to Live – by Joel Fuhrman, MD
The Gerson Therapy – The amazing nutritional program for cancer and other illnesses – by Charlotte Gerson and Morton Walker, DPM
A Cancer Therapy – Results of Fifty Cases – by Max Gerson, MD
(if you haven't heard of Max Gerson - read up on him --- if I ever have cancer try to come back I will go on his diet - even more strict than what I am doing now - he also juices every hour .... its intense but I feel it really does work! Impressive stuff and very interesting! Worth reading!)


HANG IN THERE!
Karen

Re: not good news
 

Pam,

Just wanted to let you know I have been thinking about you. Hope you have a great day.

Let us know how you are doing.

Amelia