not good news

Pam P · 04-08-2010, 05:03 PM

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.

Shobha · 04-08-2010, 05:09 PM

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

Rich66 · 04-08-2010, 05:25 PM

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.

confident · 04-08-2010, 05:26 PM

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

caya · 04-08-2010, 05:32 PM

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

confident · 04-08-2010, 05:36 PM

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

Debbie L. · 04-08-2010, 06:11 PM

Pam, I'm sorry to hear your news, and I send lots of good thoughts your way.

I would normally never THINK to disagree with Rich (smile) and maybe I misunderstand your words about the "only" thing the oncs will offer, Rich. But there is very little evidence to show that there is anything bad about the strategy of dose reduction and/or schedule change. A lot of oncs will say that their patients continue to show good response to Xeloda on alternate schedules and much lower doses. There is no evidence of efficacy, granted. But anecdotally (can't believe I'm saying this, laughing) oncs and patients report better tolerance and continued response for a one-week-on, one-week-off schedule, for example. The same for fairly significant dose reductions.

Pam if you're going to continue the tykerb and herceptin (and it sounds like you are), I think considering a lower dose and/or different schedule for Xeloda, from what you previously used, is very reasonable. AT LEAST a very low tolerance for miserable side effects - being quick to dose reduce or change frequency if there are problems?

Please keep us posted and know that you'll be in our thoughts.

Debbie Laxague

Midwest Alice · 04-08-2010, 06:23 PM

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

Rich66 · 04-08-2010, 06:35 PM

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?

Lori R · 04-08-2010, 06:59 PM

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.

chrisy · 04-08-2010, 08:42 PM

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

ElaineM · 04-08-2010, 08:45 PM

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.

Mary Anne in TX · 04-09-2010, 05:06 AM

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

Pam P · 04-09-2010, 05:27 AM

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.

Rich66 · 04-09-2010, 09:37 AM

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

Lani · 04-09-2010, 09:48 AM

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

schoolteacher · 04-09-2010, 09:48 AM

Pam,

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

Amelia

Becky · 04-09-2010, 09:52 AM

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.

jml · 04-09-2010, 01:22 PM

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

Sheila · 04-09-2010, 02:46 PM

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!