HER2 Support Group Forums - View Single Post - It is not normally like me......BUT......

hutchibk · 12-03-2008, 05:02 PM

MaryJo - yikes. You basically posted for me. I have had at least a 3-4 week struggle with so many symptoms that can't be explained, that I have been ready to just go out back and have myself shot... dizziness, queasiness, lack of appetite, headache, weakness, shakiness, general severe and unexplained malaise. But the most overriding symptom has been the BLUES. I have been finding myself more and more remote, not answering the phone, and just going underground... I have looked for answers from my Med onc, Rads onc, ENT doc, chiropractor, counselor and massage therapist. The prevailing opinion by at least half of them is that it is mostly a depression that I have sunk into without realizing it. We believe that I did have a sinus infection at one point that has been treated, and possibly have cedar allergies that exacerbate it, but there is no logical medical explanation... ALL my CBC and TM numbers look GREAT and I am not running fever, etc. I am slated for Chest/Abdomen/Pelvic CT, MUGA and brain MRI next week just to be sure we aren't missing something. (and to add insult to injury, I have been having a new flare up of sciatica pain/problems and one of my meds caused restless leg syndrome last night - so I have had a series of mostly sleepless nights on top of everything else.) This is miserable, but my onc says it is not unheard of to have a slump upon changing treatments, especially once we have been on the treatment treadmill for a long time.

I will start back on my Remeron tonight in hopes that it will start to give me some relief. But I do admit that I have had increased fear and worry over the last 2 months, just not as "up" or confident as I have been for the last 4-5 years. My onc says he has noticed the mental change in me ever since just before my brain IMRT treatments.

Yikes. But I am glad we are looking at it and trying to clear it up...

12-03-2008, 05:02 PM	#29
hutchibk Senior Member Join Date: Oct 2005 Posts: 3,519	MaryJo - yikes. You basically posted for me. I have had at least a 3-4 week struggle with so many symptoms that can't be explained, that I have been ready to just go out back and have myself shot... dizziness, queasiness, lack of appetite, headache, weakness, shakiness, general severe and unexplained malaise. But the most overriding symptom has been the BLUES. I have been finding myself more and more remote, not answering the phone, and just going underground... I have looked for answers from my Med onc, Rads onc, ENT doc, chiropractor, counselor and massage therapist. The prevailing opinion by at least half of them is that it is mostly a depression that I have sunk into without realizing it. We believe that I did have a sinus infection at one point that has been treated, and possibly have cedar allergies that exacerbate it, but there is no logical medical explanation... ALL my CBC and TM numbers look GREAT and I am not running fever, etc. I am slated for Chest/Abdomen/Pelvic CT, MUGA and brain MRI next week just to be sure we aren't missing something. (and to add insult to injury, I have been having a new flare up of sciatica pain/problems and one of my meds caused restless leg syndrome last night - so I have had a series of mostly sleepless nights on top of everything else.) This is miserable, but my onc says it is not unheard of to have a slump upon changing treatments, especially once we have been on the treatment treadmill for a long time. I will start back on my Remeron tonight in hopes that it will start to give me some relief. But I do admit that I have had increased fear and worry over the last 2 months, just not as "up" or confident as I have been for the last 4-5 years. My onc says he has noticed the mental change in me ever since just before my brain IMRT treatments. Yikes. But I am glad we are looking at it and trying to clear it up... __________________ 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."