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Old 05-30-2012, 03:13 AM   #1
Lani
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5 times worse prognosis in those w tumor cells in bone marrow before & 3 weeks after

surgery. Retest at 6 months after surgery as well to see effect of systemic therapy.

Now is this really asking a lot to help decide what type of treatment best initially, whether the treatment given has worked (so another course of treatment can be given before bones break, liver and/or lungs involved, etc?

Unfortunately, this Norwegian study did not look at her2+ bc specifically, but other papers have shown her2+ bone marrow disseminated tumor cells are even more indicative of prognosis

Wouldn't knowing your breast cancer was more likely to recur in 75% of patients rather than 15% of patients, for example, influence your choice of treatment and wouldn't singling out those patients to have more specific studies looking for the driving signalling pathways, mutations, fusions etc to determine the best treatments for them be more cost effective than paying for oncodx or similar tests for everyone with breast cancer??? (not that they are doing that now, but only because of the costs involved--$3000 per test--- and the fact that similar answers can be obtained more cheaply with a few IHC tests)

Years ago, they used size, numbers of positive lymph nodes and grade to choose women after surgery without distant metastasis to classify them as at high likelihood of recurrence for bone marrow transplants-- very expensive and health-damaging and not very effective.

Patients with leukemia get bone marrow tests all the time and do not complain--it allows them to discover whether their treatment is working and change treatments if not.

Waiting to find out if CTCs can be as good as DTCs (bone marrow tumor cells) will probably take a long time. They can't decide on a technology and it may STILL turn out that they STILL are not as good as DTCs to determine whether a given breast cancer is likely to recur and if treatment eradicated it.

There are no guarantees that a clinical trial would show DTCs to always be able to predict prognosis or correctly steer therapy, but paper after paper shows them to be predictive and more accurate I would say than other tests.

Would you be willing to undergo such testing in a clinical trial to find out?

Usually these trials are done in Germany, where oncologists are trained to be hematologists as well and are comfortable doing the bone marrow sampling.
I suppose the same is true in Norway, where this study comes from. Why couldn't an oncologist cooperate with a hematologist or an orthopedic surgeon
in doing bone marrow testing if they are not comfortable with it/good at it.

A 85 year old neighbor of mine volunteered to have her bone marrow tested to earn a little money and advance medical science She said she was slightly sore for a day or so and said it was "nothing" She said it was done by a nurse practitioner in a minor surgery room.

Even Susan Love, when asked about bone marrow testing, didn't seem keen --but gave no answer as to why not. Blood samples are simpler and do not require equipment, special training, etc

I know I have asked this before, but doesn't it seem like this should be an area that should be pursued?

How many of you would agree to be tested to find out if, indeed, as in my previous post quoted Dr Bromberg saying Dr. Bromberg, "educated bone marrow is the key in disease recurrence and may even foster a future secondary cancer."
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Old 05-30-2012, 07:34 AM   #2
norkdo
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Re: 5 times worse prognosis in those w tumor cells in bone marrow before & 3 weeks af

Indeed! I think we all would volunteer! I would! I actually asked my oncologist about bone marrow testing and all he said was "a lot of people without cancer have inert cancer cells in their bone marrow so this tells us nothing." duh!
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fall 2008: mammo of rt breast worrisome so am asked to redo mammo and have ultrasound of rt breast.I delay it til january 2009 and the results are "no cancer in rt breast. phew."
found plum sized lump in right breast the day before my dad died: April 17th 2011. saw it in mirror, while i was wearing a top, examining my figure after losing 10 lbs on dr. bernstein diet.
diagnosed may 10 2011

mast/lymphectomy: june 7 2011, 5/20 cancerous nodes. stage 3a before radiation oncologist during our first mtg on july 15th says he found cancer on the lymph node of my breast bone. Now stage 3b.
her2+++, EN-, PN-. Rt brst tumors:3 at onset, 4.5 cm was the big one
chemos: 3fec's followed by 3 taxotere, total of 18 wks chemo. sept: halfway thru chemo the mastectomy scar decides to open and ooze pus. (not healed before chemo) eventually with canasten powder sent by friend in ny (illegal in canada) it heals.
radiations:although scheduled to begin 25 january 2012, I am so terrified by it (rads cause other cancers) I don't start til february, miss a bunch, reschedule them all and finally finish 35 rads mid april. reason for 7 extra atop the 28 scheduled is that when i first met my rads oncologist he said he saw a tumor on the lymph node of my breastbone. extra 7 are special kind of beam used for that lymphnode. rads onc tells me nobody ever took so long to do rads so he cannot speak for effectiveness. trials had been done only on consecutive days so......we'll see.....
10 mos of herceptin started 6 wks into chemo. canadian onc says 10 mos is just as effective as the full yr recommended by dr. slamon......so we'll see..completed july 2012.
Sept 18 2012: reconstruction and 3 drains. fails. i wear antibiotic pouch on my job for two months and have 60 consecutive days visiting a nursing centre where they apply burn victims' silver paper and clean the oozing infection daily. silicone leaks out daily. plastic surgeon in caribbean. emergency dept wont remove "his" work. He finally appears and orders me in into an emergency removal of implant. I make him promise no drains and I get my way. No infection as a result. Chest looks like a map of Brazil. Had a perfectly good left breast on Sept 17th but surgeon wanted to "save another woman an operation" ? so he had crashed two operations together on my left breast, foregoing the intermediary operation where you install an expander. the first surgeon a year earlier had flat out refused to waste five hours on his feet taking both boobs. flat out refusal. between the canadian health system saving money and both these asses, I got screwed. who knows when i can next get enough time off work (i work for myself and have no substitute when my husband is on contract) to get boobs again. arrrgh.


I have a blog where I document this trip and vent.
www.nora'scancerblog.blogspot.com . I stopped the blog before radiation. I think the steroids made me more angry and depressed and i just hated reading it anymore
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Old 05-30-2012, 08:18 AM   #3
Ellie F
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Re: 5 times worse prognosis in those w tumor cells in bone marrow before & 3 weeks af

Thanks Lani
I had a bone marrow here in England when I had an issue with low platelets.My onc insisted it needed doing so had no choice. Here at specialist onc centres specially trained nurses perform the procedure. I agree it's not pleasant but it's certainly bearable and the soreness wears off in a couple of days.
Given the research findings it seems like a good idea until technology moves on to something more accurate.
Ellie
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Old 05-31-2012, 06:05 PM   #4
Laurel
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Re: 5 times worse prognosis in those w tumor cells in bone marrow before & 3 weeks af

I wonder if it is not an issue of expense rather than questionable resulting information provided, or the proceedure being too invasive.
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Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

15 Years NED
I think I just might hang around awhile....

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Old 05-31-2012, 09:07 PM   #5
Pray
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Re: 5 times worse prognosis in those w tumor cells in bone marrow before & 3 weeks af

I have had a bone marrow test when my treatment was over because to this day my white cells are to low. The only way I would do it is if they knocked me out this time! Nothing can stop bone pain and they actually use a drill it is crazy painful. It is full of information though. The whole test only takes 5 minutes. (I cried out loud the whole time.
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dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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Old 05-31-2012, 09:45 PM   #6
Rich66
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Re: 5 times worse prognosis in those w tumor cells in bone marrow before & 3 weeks af

wow..amazing terrain this is. As long as a patient is informed and willing along the the lines of "Pray", seems worthwhile at this point.
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Old 05-31-2012, 11:36 PM   #7
hutchibk
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Re: 5 times worse prognosis in those w tumor cells in bone marrow before & 3 weeks af

I had a bone marrow biopsy a month ago. I was on my stomach in a comfortable position (found by me) and put under for 11 minutes total (Versed and Dilauded, very very small dose). I was apprised of everything that would happen, and I felt nothing until the next day when I bruised in that area (near the coccyx). I felt bruised ache for about 5 days, and it kept getting better everyday. My Oncs used to perform bone marrow biopsies, but not anymore... I had the head of the radiology dept at the hospital do the procedure. The longest part of the test was the CT scan part, that makes sure they are performing it in the right area, not interferring with anything else.

I would do it again if it was required.

I had it because I had been in hospital three times since Christmas for various reasons, and had to have platelets transfused as well as my first (hopefully only) blood transfusion, too. The results showed us nothing (thankfully) except that I was producing less cells from my bone marrow than the average person, but I have been on non-stop chemo since 2005.
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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."

Last edited by hutchibk; 05-31-2012 at 11:38 PM..
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Old 06-01-2012, 09:24 AM   #8
sarah
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Re: 5 times worse prognosis in those w tumor cells in bone marrow before & 3 weeks af

I think I would be for the test, particularly for HER2ers, young people, triple negs and any others that are likely to have a recurrence or aggressive cancer.
I had heard that taking bone marrow was painful but that was years ago and pain is relative and knowledge can mean the difference between a long or short or healthy life.
thanks Lani
Health and Happiness
Sarah
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Old 06-02-2012, 06:54 PM   #9
Laurel
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Re: 5 times worse prognosis in those w tumor cells in bone marrow before & 3 weeks af

Sorry to hear you've had a rough go of it in 2012, Brenda. Hoping things brighten soon.
__________________

Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

15 Years NED
I think I just might hang around awhile....

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Old 06-02-2012, 10:31 PM   #10
hutchibk
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Posts: 3,519
Re: 5 times worse prognosis in those w tumor cells in bone marrow before & 3 weeks af

The taking of the bone marrow is not supposed to be painful. You should be "out" for the 10-12 minutes it takes to get the biopsy. The longest time is getting comfortable on your stomach on the CT table, and then the CT itself to be sure they biopsy just the right spot. They tell you that it will be sore in that spot for 4-5 days after, each day getting better. For me it was 7 days but it felt like a coccyx bruise (like when I fell down skiing years ago) more than anything else. They even give you ideas how to sit on couch and in car to make sure it doesn't end up too sore at any given position. I would absolutely do it again. I also take Espsom Salt baths every 3 days or nights (not for 24-48 hrs after biopsy, though) ~ and it takes all the toxins out of the body, so I am sure that helped, too.

Thanks Laurel! Things are definitely on the upswing. And let me just say Yay TDM1~
__________________
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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