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Old 04-21-2010, 06:14 PM   #1
shonda
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Location: Heath, Texas
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Recurrence vs. Metastatic

I have metastatic disease I have been batteling for 4 yrs now.

I know what recurrence means, but my question is:

What is worse?

I am running out of chemo options at this point as I am on my 5th-6th line.
I did ask my onc last week-- since the mets have now gone to the liver, what happens if they can't be controlled (which I do know that answer), but she said to me that it is unrealistic to think I am going to live another 10 yrs. Not a canidate for surgery since there are 6 and in both lobes.

So lets say we pull them back and reach NED here.. If they showed up again later is that considered a recurrence or just still batteling mets all together.

It sounds to me someone with a recurrence has "more" options then some one who has been batteling with lines of chemo-- bone mets and then liver shows up while on taxol. My onc keeps telling me the cancer finds a way to wiggle around chemo and the more chemo you have the more resistant you become. I am Her2 positive and on herceptain for the last 4 yrs. There has even been mention of being resistant to that. WOW what does a person do when we have used chemo to keep bone mets stable and there is not much left for this organ?

Thanks
Shonda
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Old 06-24-2010, 07:32 AM   #2
pibikay
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Re: Recurrence vs. Metastatic

Hi shonda
I am myself a bit confused.My son tells me that with metastatic once itis cured it does not mean for ever and that there are chances of the cancer surfacing again,
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huband of Hema
Metstatic Breast Cancer Stage 4
Left breast cauliflower 25x20cm
ossousmetstatis in vertbrae secondaries L4=L5secondary
nodules in both liver lobes secondary
Diagnosed 10th March 2010
ER/PR-ve
Her 2 neu +++
Taxotrne Zylotec started 16th March
Herceptin added 5th April.9th Herceptin over on 20th Sep '10.Started on Tykerb and Xeloda on 22nd Oct2010TYKERB 4 TAB A DAY XELODA 4 TAB A DAY ONE WEEK ON ONE WEEK OFFZoletrust infusion every 4 months.Lesion in Brain 3D CRT Radiation started on 1st Feb'12 for 20 days ,5 days a week for 4 weeks.Devloped a small lump in breast.Xeloda stopped from 11th April '12.On Taxol.After 3 cycles of Taxol Taxol stopped.Back to Xeloda regime from 3rd July
Herceptin started again on 27th Dec 2012.Xeloda stopped Navelbin added on 7th February 2013.Now on Tykerb Herceptin and Navelbin
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Old 06-25-2010, 04:23 PM   #3
my2boys
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Re: Recurrence vs. Metastatic

Dear Shonda,

Your onc doesn't seem to be giving you hope and hope is what you need right now. Please remember that your onc in not God, he/she is just a doctor.

Please do not give up hope. I am dealing with a recurrence, although a local one. I am on my second round of chemotherapy, A/C and Taxol with Herceptin and Tykerb. The TCH did not work for me. No one has said anything to me about chemo not working and cancer wiggling its way around it. Please don't listen to this. It is just a matter of finding the right treatment for yourself.

Have you considered Tykerb. It may just be that the herceptin isn't working as well as they had hoped. I know that in my case it only suppressed the cancer, but as soon as I was finished my year, it grew back in the exact same spot. My hope is that the Tykerb, combined with the Herceptin, will do the trick. I am thankful that there are these new types of drugs to treat HER2+.

I will pray for you and hope that you are surrounded by people who will encourage you and lift you up......and most importantly will give you HOPE. It is the mainstay and don't let go of it.

Hugs,
Anne
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Old 06-26-2010, 09:39 PM   #4
hutchibk
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Re: Recurrence vs. Metastatic

Shonda et al, recurrence that is in a distant place (in the torso, brain, an organ, etc), which is not strictly limited to a "local" location" such as breast tissue or an axillary lymph node is called metastasis, and is considered stage IV.

Now this does not at all mean that it is the end of the road. I have been stage IV metastatic for almost 6 years, my first recurrence was in the lungs... I am also what is called "heavily pretreated" meaning that I have had 8 different chemos and 3 different anti-estrogen drugs at this point (as well as 4 different radiation treatments to the brain, pituitary and the rear pelvic bone), and I still have it knocked back and very stable. We only see one small active spot on my adrenal gland at this time, and a small change in anti-estrogen treatment (from aromasin to tamoxifen) seems to be gaining us ground on that spot based on dropping tumor markers. I am also on a combination of Tykerb and Herceptin and have been for almost 2 years.

The key for us HER2 surthrivors is to know that there are a lot of new treatments in the pipeline in trials and the researchers are working feverishly to find us more options and potentially a cure. As my Onc always says, we still haven't scratched the surface of several treatments that we are keeping in our back pockets. I am healthy and living a normal life as a stage IV metastatic patient.

I suggest you look to San Antonio or MD Anderson in Houston for an Onc who is maybe more tapped into the HER2 advances and aware of upcoming trials.
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NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 06-27-2010, 03:04 AM   #5
Delaney
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Re: Recurrence vs. Metastatic

Brenda, your reply is jsut the BEST. Six years of treatments, well I could handle that too if it works as well for me. Am so glad to hear how well you are doing, have just started taxotere/herceptin. Really hoping this works for me but my oncologist said just the same as you, that there are lots more drugs and treatments to try until we find the right one. Without this site, I would be in such a low place. i read the replies and then look at the signature and think wow, what that person has been thru and yet they can take the trouble to reach out to someone else. Fantastic.
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Delaney, dx 2008 lumpectomy,mastectomy,a/c,paxitaxol, tyverb 1 yr.
dx 2010 mets lymph nodes, skin, lung. start taxotere/herceptin.
Stopped taxtere/herceptin, now on tyverb/xeloda.
Lung mets shrinking.
Back on Herceptin with T/X. Partial response.
Skin mets progressing. Radiation scheduled mid february 2011.
Spot found on hip - radiation to hip beginning mid February 2011.
Now trying Gemzar/Tyverb/Herceptin and Zometa.
CT scan Feb 2011 - lung clear!
Brain mets (specks) - radiation mid Feb.
Brain Scan June'11 - Clear
CT Scan June'11 - Good - skin met active - watch and wait.
Surgery to remove skin met. Surgery to back 2012, four titanium rods inserted. Skin mets reappear. On Navelbine, not working. 4 week washout, start Myocet for skin and lung mets August 2012. Brain scan clear despte intermittent blurry vision (something hiding? Am suspicious but hopeful. )On we go, glad to be here.
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