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Old 09-26-2008, 07:09 AM   #21
pattyz
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Joe,

Do you have the recurrance rates after WBR alone??

thanks,
pattyz
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Old 09-26-2008, 07:24 AM   #22
pattyz
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Sherry, Gerri and whomever else is reading here

Musa Myers at bcmets.org has posted info that looks more recent than 2006, in which it states that 33% of Her2+++'s will develope CNS or Letpo mets. And the breakdown of that % was 10 to 1 ie: 10 CNS to 1 Leptomenigial (sp?) mets.

Still high, yes. But that leaves 66+% that do not develope this kind of mets...

MRi w/contrast is the GOLD STANDARD for detecting brain mets. Accept no other.

A "simple" report to onc of new headache or visual disturbance is enough to order the MRi.

If anyone is looking for inspiration, please read through Emmay's sister's History.

She has had every (or nearly so) treatment option available for brain mets over the course of the past four yrs! She responds well... until. Then tries something else. Really remarkable.

best to all,
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Old 09-26-2008, 07:50 AM   #23
gdpawel
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HBOT For Radiation-induced Necrosis

Pattyz points out something very important. A combination of unenhanced/enhanced MRI is a "gold standard" for detecting CNS mets. I agree, accept no other.

Radiation-induced necrosis is a serious reaction to radiation treatment. It may result from the death of tumor cells and associated reaction in surrounding normal brain or it may result from the necrosis of normal brain tissue surrounding the previously treated metastatic brain tumor. Such reactions tend to occur more frequently in larger lesions, either primary brain tumors or metastatic tumors.

The diagnosis of radiation-induced necrosis is difficult to confirm. Many patients have a mixture of tumor and radiation necrosis and a biopsy may be necessary to distinguish it. Neither symptoms nor radiographic findings clearly distinguish radiation-induced necrosis from tumor. However, the FDG-PET Scan (which measures cellular metabolism) and T1-SPECT studies are useful in differentiating radiation-induced necrosis from recurrent tumor.

Hyperbaric Oxygen Therapy (HBOT) is a useful therapeutic option for patients with confirmed symptomatic radiation necrosis. Until the new millenium, the only treatment for patients was pentoxifyline or heparin therapy, and it was almost always unsuccessful. Both Duke University for Hyperbaric Oxygen Therapy and the University of Cincinnati previously had clinical trials on this science.

The most common condition treated at some Hyperbaric Oxygen Therapy Centers is tissue injury caused by brain radiation therapy for cancer. Wound healing requires oxygen delivery to the injured tissues. Radiation damaged tissue has lost blood supply and is oxygen deprived. Chronic radiation complications result from scarring and narrowing of the blood vessels within the area which has received the treatment. Hyperbaric Oxygen Therapy provides a better healing environment and leads to the growth of new blood vessels in a process called re-vascularization. It also fights infection by direct bacteriocidal effects. Using hyperbaric treatment protocols, "most" patients with chronic radiation injuries can be cured.

Hyperbaric oxygen therapy is administered by delivering 100 percent oxygen at pressures greater than atmospheric (sea level) pressure to a patient in an enclosed chamber. Hyperbaric oxygen acts as a drug, eliciting varying levels of response at different treatment depths, durations and dosages, and has been proven effective as adjunctive therapy for specifically indicated conditions.

Oxygen is a natural gas that is absolutely necessary for life and healing. Purified oxygen is defined as a drug but is the most natural of all drugs. Oxygen under pressure is still the same gas but is more able to penetrate into parts of the body where the arterial flow is hindered, producing ischemia (loss of blood flow) and hypoxia (lack of oxygen). When oxygen under pressure is breathed by a patient in a sealed chamber, it is termed a hyperbaric oxygen treatment (HBOT).

In addition to raising the arterial levels of oxygen 10 to 15 times higher than that produced by normal atmospheric pressure, the pressure exerted within the body can and does exert therapeutic benefits on acute and chronically traumatized and swollen tissus.

If on medicare, the approved course is 2.0 atm (two times above atmospheric pressure) for 90 minutes 20-30 sessions. For hyperbaric oxygen therapy to be covered under the Medicare program in the United States, the physician must be in constant attendance during the entire treatment. This is a professional activity that cannot be delegated in that it requires independent medical judgment by the physician. The physician must be present, carefully monitoring the patient during the hyperbaric oxygen therapy session and be immediately available should a complication occur. This requirement applies in all settings and no payment will be made by Medicare unless the physician is in constant attendance during the procedure.

Who Should Avoid This Therapy?

Avoid these treatments if you have a seizure disorder, emphysema, a high fever, or an upper respiratory infection. Do not undergo them if you have a severe fluid build-up in the sinuses, ears, or other body cavities. Forego them if you've had surgery for optic neuritis, or have ever had a collapsed lung. Avoid them, too, if you are taking doxorubicin (Adriamycin), cisplatin (Platinol), disulfiram (Antabuse), or mafenide acetate (Sulfamylon).

Pregnancy was once considered a contraindication for hyperbaric therapy. However, it's now deemed acceptable if a condition will cause long-term damage to the mother or fetus. For example, the treatments are given to pregnant women with carbon monoxide poisoning, which is toxic to both mother and child.

What Side Effects May Occur?

Seizures, a result of the direct effect of oxygen on the brain, are the most serious side effect associated with hyperbaric therapy. The risk is estimated at one in 5,000. Every chamber is equipped with a quick-release mechanism. If a seizure occurs, the oxygen will be immediately released and the seizure will subside.

Minor side effects include popping of the ears similar to that experienced in a descending aircraft. Sinus pain, earache, and headache are other possible side effects. In fact, pain may occur in any body cavity where air can get in but can't get out. For example, dental pain may occur if a filling has trapped air beneath it. In rare cases, pressurized oxygen may rupture an eardrum.

Sources:
http://www.hbot4u.com/radiation.html
http://www.hbot.com/frontpage.htm
http://health.ucsd.edu/specialties/hyperbaric
http://www.baromedical.com/about_hyp...c_medicine.asp
http://www.spinalrehab.com.au/Updates/Hyperbaric%20Oxygen%20treatments%20ca n%20help%20patients%20with%20radiation-induced%20brain%20injuries.htm

Last edited by gdpawel; 01-04-2009 at 11:39 PM.. Reason: addition info
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Old 09-26-2008, 03:35 PM   #24
Darlene Denise
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Emmay and Brain Mets

I'm interested to know what hospital your sister is receiving her treatment. Is she in a trial? If not, can you share her onc's info?

I just had Cyberknife treatment for 8 <5mm lesions last week and visited with my onc Monday to discuss drug options to help with reoccurance and he does not want to go that direction. So, I am very interested in hearing from you and anyone else who might be able to give me resources on this. Right now, I am on Herceptin only.

Thanks and LOL...Darlene in Virginia Beach
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Old 09-26-2008, 05:06 PM   #25
Gerri
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Patty Z,

Thanks for the referal to bcmets.org. That was my first time on that site and I tried the seach button to see if I could find the info, but none of what came up seemed to be what I was looking for. Can you be a little more specific, or maybe even provide a link to the page with the statistics? I would really appreciate it.

Thanks!
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Gerri
Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
**********
Enjoy the little things, for one day you may look
back and realize they were the big things.
- Robert Brault
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Old 09-27-2008, 07:53 AM   #26
pattyz
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Gerri,

I hope this link will work for you... if not you most likely know how to get there anyway!

http://www.bcmets.org/archive/2008-09/1138.html

The above link is Musa's reply to the original post:

Herceptin contined after dx of brain mets twic

"We" at bcmets.org are all about, well... bc mets ! We have a 'sister site' developed in the main by Musa which is ALL about bc brain mets:

http://brainmetsbc.org/

and I so wish it were in existance when I was first dx'd with mets to brain... Tons of info and stories. (yea, I'm in there, too!)

So, take what you like and leave the rest

hope this has helped with what you are most interested in,
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Old 09-27-2008, 10:11 AM   #27
hutchibk
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Darlene - have you already had Tykerb/Xeloda?

What direction does your doctor want to go? You need to switch to or add a treatment that crosses the blood brain barrier.
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Brenda

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 09-27-2008, 10:40 AM   #28
Lani
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hutchbk and others--as I understand it

MRI is based on magnetism and looks at the water content of tissues and thus shows soft tissues better (it also is exquisitely sensitive to detecting some heavy metals such as iron--due to their magnetic properties, such that nanomolecules containing iron can create easy to see abnormalities even whent the structure is very small--but new contrast agents based on fusing herceptin to iron-containing nanomolecules are still experimental and not yet appproved for people (they theoretically could show micrometastatic disease that is her2+) This property is not entirely useless until these agents are approved as . iron deposits , wuch as in in hemachromatosis, a disease where there are abnormal iron deposits in internal organs, shows up easily)

CT is based on the same radiation as xrays and shows bones (hard tissues) in more detail

CTs create images that are sliced more thinly than MRI (due to technologic challenges) and thus show smaller abnormalities than could be detected on MRI
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Old 09-27-2008, 07:06 PM   #29
Gerri
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Thanks pattyz, the links were perfect! I really appreciate you taking the time to post them.

All my best,
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Gerri
Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
**********
Enjoy the little things, for one day you may look
back and realize they were the big things.
- Robert Brault
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Old 09-27-2008, 11:32 PM   #30
hutchibk
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Lani - oddly that is almost the total opposite of what my Onc, Radiologist and Rads onc have told me... When we saw spots in my lungs on the PET, they wanted CT, not MRI. When we saw spots in a bone in the neck and the iliac wing on PET, they wanted MRI so we could get real measurement. Hmmmmm.
__________________
Brenda

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 09-28-2008, 05:52 AM   #31
Joan M
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Sherry, Joe is right about the 40% and Brenda is right, too, that this is a scary thread. But as long as you try to get a brain MRI every year, that should help you keep on top of things. I had one in May 2007 and was due to get another a year later until I got sidetracked by the lung recurrence after the wedge resection, so it ended up being 16 mos. instead of 12 mos. And even though there's a higher incidence of brain mets among HER2, my onc said she was absolutely shocked. And I agree. So was I. I know stats can be scary, but as you can see many women here are doing very well, and certainly you are one of them. Joan
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Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2023 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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Old 09-28-2008, 07:15 AM   #32
jones7676
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It sure gets complicated...some places use MRIs and PETs such as where I go in Marquette. When I go to Chicago they don't use PETs the use CT scans. I often wonder who is right....but as long as it is good news.....
__________________
Barb

10/03 Radical Mastectomy 3 cm tumor - 1/17 Nodes Stage II B, Her 2 +++ ER-/PR- 11/03 4 AC 4 Taxol 12/05 Stage IV - Lung met , Bone mets - Carbo, Taxotere, Herceptin 9/06 - 2 cm brain tumor 10/06 - Tumor removal surgery - Herceptin Halted 12/06 gamma knife tumor base.1/07 Navelbine/Herceptin 4/07 Rads to R femur 5/07 Stereotactic - new 2 cm brain tumor 4/07 Start Xeloda 5/07 Tykerb added 7/07 Brain MRI clean 10/07 .055 cm brain met found. 12/07 Stereotactic -1 cm brain tumor Start Tykerb 11/07 Abraxane/Herceptin 5/08 Cisplatin, Gemcitabine/Herceptin 6/08 Stereotactic to 1cm 9/08 Stereotactic repeat (growth). 11/08 Pet Scan Good but new tiny met on L lung/dead Brain surgery (no cancer cells found/scar tissue) 1/09 Chemo restarted 2/09 Pet Scan Bad - R larger very active/active L active lymph nodes both sides of chest MRI- mets slight increase 2/09 Start Doxil/Tykerb Treatment
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Old 09-28-2008, 08:28 AM   #33
pattyz
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Lani,

When a 'normal' Mri w/ contrast is found to show brain mets, an additional MRI w/contrast and smaller slices is done before the planning of any focalized rads.

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