HER2 Support Group Forums - View Single Post - Myelodysplastic Syndrome

hutchibk · 06-12-2012, 10:38 PM

First things first. You have to go for a bone marrow biopsy first. I have had all of these things recently (except for low whites), and was worried that I had become refractory to platelets (since I have had several transfusions ordered by my neurosurgeon after brain surgery) and that my bone marrow was going to show something terrible (like Robin Roberts has) because I had been so heavily pretreated. 1) my hemoglobin had fallen to 7.4 from the upper 9s/10, so I had a transfusion. 2) I had several platelet transfusions this winter/spring so my platelets would stay at a constant 90-100 level while my cerebellar surgery site healed and clotted. I thought I was becoming refractory (meaning you don't go 'up' any more on platelets on your own, just down down down). 3) I was afraid that I had either another cancer or a bone marrow/blood disorder due to all we had to do, plus a clinical trial, and being heavily pretreated, so we did a bone marrow biopsy at the behest of my onc, who also wanted an answer.

It turns out that 1) hemoglobin hovers around 9.5-10.5ish for me these days, but we keep a close eye on it. Today it was 9.6, and I am a little fatigued. It will probably go up, it always seems to. It controls a lot of things... 2) platelets are now at a steady 70, but we like them to be 75-80 minimum. Today they were at 60. Ouch. And I have a bruise (blown vein) to prove it... But I am not refractory, as they go down and then up and then down and then up, due to TDM1. 3) I did a bone marrow biopsy about a month ago, and it turned out that I just produced fewer cells than most others, possibly caused by all the chemo, but that was all. No cancer or blood disorders.

So it can just be coincidence. Please don't get yourself in a lather until you have a bone marrow biopsy. It's not as bad as it sounds (and I was askeered). That is the way to truly know.

06-12-2012, 10:38 PM	#11
hutchibk Senior Member Join Date: Oct 2005 Posts: 3,519	Re: Myelodysplastic Syndrome - Robin Roberts...now I'm feeling nervous First things first. You have to go for a bone marrow biopsy first. I have had all of these things recently (except for low whites), and was worried that I had become refractory to platelets (since I have had several transfusions ordered by my neurosurgeon after brain surgery) and that my bone marrow was going to show something terrible (like Robin Roberts has) because I had been so heavily pretreated. 1) my hemoglobin had fallen to 7.4 from the upper 9s/10, so I had a transfusion. 2) I had several platelet transfusions this winter/spring so my platelets would stay at a constant 90-100 level while my cerebellar surgery site healed and clotted. I thought I was becoming refractory (meaning you don't go 'up' any more on platelets on your own, just down down down). 3) I was afraid that I had either another cancer or a bone marrow/blood disorder due to all we had to do, plus a clinical trial, and being heavily pretreated, so we did a bone marrow biopsy at the behest of my onc, who also wanted an answer. It turns out that 1) hemoglobin hovers around 9.5-10.5ish for me these days, but we keep a close eye on it. Today it was 9.6, and I am a little fatigued. It will probably go up, it always seems to. It controls a lot of things... 2) platelets are now at a steady 70, but we like them to be 75-80 minimum. Today they were at 60. Ouch. And I have a bruise (blown vein) to prove it... But I am not refractory, as they go down and then up and then down and then up, due to TDM1. 3) I did a bone marrow biopsy about a month ago, and it turned out that I just produced fewer cells than most others, possibly caused by all the chemo, but that was all. No cancer or blood disorders. So it can just be coincidence. Please don't get yourself in a lather until you have a bone marrow biopsy. It's not as bad as it sounds (and I was askeered). That is the way to truly know. __________________ 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."