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Old 06-13-2012, 08:17 PM   #14
hutchibk
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Join Date: Oct 2005
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Re: Myelodysplastic Syndrome - Robin Roberts...now I'm feeling nervous

If any of you decide you need a bone marrow biopsy, here's what I went through. I was scared, because you are told to be scared of bone marrow biopsies. But no more!

I had a bone marrow biopsy a month ago. I was on my stomach in a comfortable position (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). I was put under for 11 minutes total (Versed and Dilauded, very very small dose). 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. 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). They tell you that it will be sore in that spot for 4-7 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 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. 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. I would absolutely do it again. I had been getting non-stop chemo with no breaks since 2005. I also take Espsom Salt baths every 3 days or nights and it apparently takes all the toxins out of the body, so I am sure that helps, too.
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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; 06-13-2012 at 08:19 PM.. Reason: change spelling
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