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05-08-2008, 10:06 AM
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#1
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Senior Member
Join Date: Sep 2005
Location: Melbourne Victoria
Australia
Posts: 330
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ideas for sinus problems please
Hi everyone
It s 3 am in the morning here in Melbourne Australia and I am being kept awake by sinus pain. Herceptin seems to make my chronic sinus problems much worse. Does anyone have any "cures" that have worked? I havent been taking as much Q10 as I should and have been off my fish/flax oil for a week or so which probably isnt helping.
Regards
Jackie (down under)
PS: Having scans in 4 days wish me luck.
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05-08-2008, 10:26 AM
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#2
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Is it sinus congestion? And is it complicated by allergies as well? Or is it simply pain in the sinuses resulting from the Herceptin? It could be an allergic reaction to Herceptin and the one time I had that type of reaction during my Herceptin infusion, it went away pretty immediately with the assistance of Benadryl, so after that I took Benadryl during every infusion and it stemmed the reaction. I wonder if simply taking Benadryl post infusion might continue to help you in between treatments...
__________________
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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05-08-2008, 10:34 AM
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#3
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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If its pain in the sinuses, I have found that using saline nasal spray has helped me immensley...it is the first thing I grab when I get up in the morning.
__________________
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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05-08-2008, 10:52 AM
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#5
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Senior Member
Join Date: Jul 2007
Location: Canada
Posts: 2,193
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Hi Jackie Down Under
I too have sinus problems and they were made worse
by the herceptin.
I have always used a steroid nasal spray (beclomethasone).
I use it when I have a cold to help keep the passages open
and prevent an infection from developing. I also use it
during allergy season.
Like Sheila, I am a firm believer in the plain saline nasal sprays.
They make a huge difference.
If I'm having major pain but do not have an infection, I use
tylenol for the pain and I put a hot face cloth on my forehead.
Hope some of these ideas help.
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05-08-2008, 11:03 AM
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#6
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Senior Member
Join Date: May 2008
Posts: 62
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I, also, am a chronic sinus sufferer. Used to get sinus infections all the time.
Quit taking antibiotics for it years ago (never worked anyway, and just stripped my gut so I had to chow down on macrobiotics every time after.)
This guy is not a total wacko. Book is Sinus Survival and you can probably get it dirt cheap from an Internet book monger in your area. Actually has some very sound medical advice (and some strange advice):
http://www.amazon.com/Sinus-Survival.../dp/1585420581
Gives many explanations as to what the guck growing in your sinuses might be. And how to combat it.
Make your own warm saline: 8oz warm water, 1/3 tsp uniodized salt, pinch of baking powder (sterilize all in distilled water at first to be safe, especially if immune compromised). I just use tap water (ours is quite good), and keep a pot of salt with bicarb in the bathroom. You can also buy pre-measured saline mix on the net or at lots of pharmacies (at least in U.S.).
There is a kind of sinus pot (kinda like Aladdin would live in) that you can put the mix in to really snort it up your nose. But not easily found. I use an ear bulb, very soft rubber about 2" with a long tapered 2" narrow barrel. Can be found at medical supply companies. You can also use a kid's/infants nose bulb but the longer barrel helps you get the saline way up and in. Suck up the saline with the bulb and breath in. Takes some practice. Then blow VERY GENTLY. Once you get good at it you'll even have to move your head side to side and hang your head upside down to gently blow and decongest your sinus. But oh, after you learn to get good at it your sinuses will feel so much better. Clears out the goo and decreases the swelling of the tissue. Keep practicing.
Because of allergies I even rinse my sinuses after being outside or cleaning my dusty house (ha! when was the last time that happened).
I'm so good at it now I can hit all the sinuses. Look at maps on Internet, your sinus are huge, above eyebrows even.
If you cannot pull this off, lay on your back and just dribble in some home-made saline. I prefer the home-made because it does not have the plasticy (cannot seem to spell) taste and smell that Ocean and the like have. Heck of a lot cheaper, too.
Had a couple colds (two snotty boys!) during ACTax and rad, still kept flushing and getting similar results. Didn't have to do any antibiotics for the sinus during treatment. Did not have any problems that were unusual with a year of weekly herceptin, so cannot help there. No chance it is an allergy to the herceptin? But why in your sinuses?? Would not make sense? Brenda, did they give you a mechanism?
JUST BE VERY CAREFUL. Check with your Doctor first, if you are prone to bleeding, make sure your doc says this is O.K......
Carla
Last edited by abitjaded; 05-08-2008 at 11:07 AM..
Reason: Neti pot =Aladdin's teeny tiny living quarters
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05-08-2008, 03:34 PM
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#7
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Senior Member
Join Date: Mar 2006
Posts: 1,843
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I have seen a couple of trials suggesting fish oil will assist along with reduction of Omega 6 fruit veg etc.
So it back to the 3s and 6s again
http://her2support.org/vbulletin/sho...ght=greek+diet
RB
Ps got me thinking and I went and looked up sinuses on wikpedia.
Fascinating.
It might explain an occassional skin problem at the bridge of my nose, and be caused by an occasionally minorly grumbling many years ago apisectomised tooth
http://www.dentalsurgeon.co.nz/dental/topics/sgap.htm
in the area of the lower sinus, which I keep meaning to get attended to, and I will now put up the list.
Many thanks for highlighting the issue.
PPS Very good luck with the scans.
Last edited by R.B.; 05-08-2008 at 03:50 PM..
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05-08-2008, 07:55 PM
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#8
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Senior Member
Join Date: Feb 2006
Location: Watkinsville, Georgia
Posts: 357
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Neti pot was/is my savior!!! Seriously, it works wonders. I have my kids do it too. Doesn't look the like fun.....but no drugs, just good old nasal cleansing!
Hugs ~ Ruth
I'm from Georgia and we have major pollen problems. It really helps.
__________________
[/SIGPIC]~~~~~~~~~~~~~~~~~~~~~~~~~~~
Diagnosed 6/03 nursing daughter
Dose dense A/C 4x
Modified rad mast 8/03
IDC; 3 cm; 10+/16 nodes; ER/PR-; Her2+++
Weekly taxol w/Herceptin (off label) 12x's
40 weeks Herceptin
Radiation 33x
Reconstruction w/ implants 05 & 07
NED
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05-12-2008, 07:49 AM
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#9
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Senior Member
Join Date: May 2008
Posts: 62
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Jackie,
Any better?
Carla
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05-12-2008, 08:24 AM
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#10
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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FYI
Most Walgreens now carry the Netti Pots, as do CVS ad some Osco's/....makes them easy to find!
__________________
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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05-12-2008, 07:40 PM
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#11
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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I rarely have sinus congestion, just pressure and pain. I put a hot(as hot as I can stand) moist cloth on my face, particularly over sinus areas and also breathe in the moisture. It relieves the pressure--I also sometimes rub Vicks vaporub on the sinus area and breathe in the vapor.
__________________
Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14 YEARS NED!
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05-13-2008, 01:44 AM
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#12
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Senior Member
Join Date: Sep 2005
Location: Melbourne Victoria
Australia
Posts: 330
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thankyou all
I tried the nasal wash which was OK and upped my Q10 and olive leaf extract. Fine now for the time being.
cheer
Jackie
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05-13-2008, 08:00 AM
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#13
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Senior Member
Join Date: May 2008
Posts: 62
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Yeah, Jackie!
What is the season down there right now? Fall, molds and mildew and such or are you in a dry area?
Carla
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05-13-2008, 01:29 PM
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#14
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Senior Member
Join Date: Dec 2005
Location: Michigan
Posts: 230
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Another vote for the neti pot w/ the saline solution it did wonders for my sinuses I use it everday and don't use allergy or sinus meds anymore. Also, agree with RB on the diet.
Mary
__________________
Mary
Diagnosed 11/04 @39yrs. young
Stage IIB
2.5 cm, ER/PR- Her+++, grade 3
Partial Mast., 1/3 pos. node
1/05 full node dissection
4 A/C 4 Taxol DD, Herceptin 1 yr.
30X rads.
BRCA Negative
NED
Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all -Emily Dickinson
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05-14-2008, 08:48 PM
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#15
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Senior Member
Join Date: Feb 2006
Posts: 1,014
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I'm going to have to look up the neti pot because Herceptin has played hell with my sinus'. The headaches were constant and terrible for the first year and then I adjusted to herceptin, still had headaches just not as bad. Now that I am getting the triple dose, I've had problems with them again, in fact have a headache right now. I've always found Sudafed non drowsy would help. I'd rather do something natural though..sherryg683
__________________
Sherry
Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year
Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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