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hutchibk · 03-28-2007, 05:22 PM

I seemed to get mild relief from motrin, but not for long... It was definitely a matter of getting in with a lymph PT and getting a jump on it from several angles... massage, compression sleeve, reduction of salt, sleeping different and exercises. And learning that I will need to stay on top of it from now on. No getting lazy or the achiness will return. If I am consistent, I can prevent any swelling, which I hear is much more painful!

Oh, my lymph doc and lymph massage PT asked me NOT to get deep tissue massage! They both said that it can "bruise" (for lack of a better word) our delicate, overworked lymph systems, which are having a hard enough time trying to work efficiently as it is. So, I confirmed with them what kind of massage I can get (outside of the rehab PT setting) and they said basically "between the earlobes and the bottom of my ribs, lymph massage only" by a therapist with solid lymph training. I can have the deep tissue massage on my booty and legs.

Also, my lymph doc is pretty conservative about how gentle to be with the affected arm. She suggests not carrying anything over 10 lbs. with that arm, including lifting weights for exercise. Also, she wants me to wear my compression sleeve most days (especially at work, I am a hairstylist) and ALWAYS when I am flying on a plane.

03-28-2007, 05:22 PM	#8
hutchibk Senior Member Join Date: Oct 2005 Posts: 3,519	I seemed to get mild relief from motrin, but not for long... It was definitely a matter of getting in with a lymph PT and getting a jump on it from several angles... massage, compression sleeve, reduction of salt, sleeping different and exercises. And learning that I will need to stay on top of it from now on. No getting lazy or the achiness will return. If I am consistent, I can prevent any swelling, which I hear is much more painful! Oh, my lymph doc and lymph massage PT asked me NOT to get deep tissue massage! They both said that it can "bruise" (for lack of a better word) our delicate, overworked lymph systems, which are having a hard enough time trying to work efficiently as it is. So, I confirmed with them what kind of massage I can get (outside of the rehab PT setting) and they said basically "between the earlobes and the bottom of my ribs, lymph massage only" by a therapist with solid lymph training. I can have the deep tissue massage on my booty and legs. Also, my lymph doc is pretty conservative about how gentle to be with the affected arm. She suggests not carrying anything over 10 lbs. with that arm, including lifting weights for exercise. Also, she wants me to wear my compression sleeve most days (especially at work, I am a hairstylist) and ALWAYS when I am flying on a plane. __________________ 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."