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Old 11-15-2008, 01:45 PM   #1
kcherub
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Angry Anyone else getting a cold over and over?!?

Hey, there! Okay, I am at my wits end here. Before treatment, I was never sick. Ever. I hadn't had a "cold" in about three years. Just in the last three months, I have had two and this last one (started two weeks ago today) seems to be coming back or just still lingering. It started with the sore throat, stuffy nose, then moved on to coughing up small mammals (LOL). I finally had the dry cough that comes at the end, for which I was thankful as I knew it was the end. That lasted for about a week. It was sometimes productive, sometimes not. THEN, today I have the sore throat again!

I hate being sick now, because I worry about everything else. When I started with the productive cough, I thought--Oh, Lord. It's lung mets. I know I am an idiot--my "colds" run the same course, so I should know what to expect. I thought that I might have the flu, as I was so BONE TIRED last week that I almost couldn't function. I also have chills and general body aches. That's a little better now, but I am still tired. It's almost like going through radiation again.

What do you guys take for the common cold? OTC, supplements, etc.? Give me anything, and I will try it all. I hate feeling like this. I did take a prescription Ibuprofen, Protonix and a Claritin today. I can't say that any of it helped.

Last week, all I took was Mucinex and Delsym (for 2 nights just to get some sleep). I had bloodwork just about three weeks ago, so I had to toss a blood cancer out. Yes, that is how my mind works now.

I told my husband that anyone who has had cancer should get a free pass on being sick in any other fashion for at least 5 years. At least!!!

Thank you (as always)...

Take care,
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Krista
Diagnosed 3/29/2007 @ age 34
Stage 1, Node Neg. (SNB), Grade 2, 1.4 cm. IDC
ER/PR 90%+ HER2 +
6 TCH started 5/25/2007, ended after #5 due to steroid "reactions" and neuropathy in feet and hands
BUT--#6 CH w/o Taxotere
Begin Herceptin alone 9/28/2007
30 rads completed 12/19/2007
Finish Herceptin 5/9/2008
Stopped Tamoxifen early--HATED it.
Married 17 years
13-year old son
3 embies on ice (from 1999)
GA, USA


Last edited by kcherub; 11-15-2008 at 01:46 PM.. Reason: to capitalize "Lord", which would have driven me crazy had I left it that way.
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Old 11-15-2008, 02:52 PM   #2
Lien
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Colds

I know the feeling: for the first year or two, every and any symptom made me feel I had cancer. It gets better over time, but it never quite goes away. Or it didn't for me, and I'm 4 years, 10 months out from diagnosis.

My rads tech told me that it can take up to a year to bounce back from surgery and rads. Your whole system is affected. I remember trying to play soccer with my boys, and being outrun by my then 73 year old father, who has a heart condition, joint problems, diabetes and who is a prostate cancer survivor. Not very encouraging.

I used to get colds too. Now all I get is an allergic reaction. ;-( Those virusses are mean; they grab you when you are low. Miserable creatures. But you'll get them in the end. Take it one step at the time. I try to remember that it's better to worry about colds than to worry about a recurrence. This doesn't always work, but hey, I'm only human.

Now cuddle up in a corner with a cup of tea, a good book and allow yourself to feel sorry for yourself for half an hour. See if you can keep it up that long. It always helped me to realize that I couldn't manage to do that for more than 15 minutes or so.

Hugs

Jacqueline
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Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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Old 11-15-2008, 03:47 PM   #3
BonnieR
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Krista, ditto the "at least!!!"
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Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 11-15-2008, 04:33 PM   #4
dlaxague
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Krista, what I notice is not so much that I'm sick more often, nor that I get sicker - but that when I do get something, it takes forever to run its course. It isn't more severe, and it's not like I take longer to recover. It's more that it just takes its time to complete its cycle. For example, I'll get a sore throat, and will be aware of it moving around to different areas of my throat for days, and then finally the sniffles will kick in, etc. It makes it hard to know what to do as far as work - I hate to expose others but I can't really take five days off for a simple cold, either. Before chemo, I'd get colds like other people - bam, nastiness for a day or maybe two and then resolving.

I know that when I've had labs done, since chemo, my white count has been slightly subnormal (3 or 4 thousand) but since I haven't seemed to be sick more often, I haven't really worried about it.

Does anyone else notice this slo-mo effect for the cold bugs?

Debbie Laxague
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Old 11-15-2008, 04:42 PM   #5
dlaxague
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PS: how old are your kids?

It's common to be sick much more often when your kids start preschool or kindergarten, especially if they haven't been in day care as babies/toddlers, because they bring home so many new bugs for the family to develop resistance to (the hard way).

Debbie again
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Old 11-15-2008, 04:59 PM   #6
freyja
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elderberry

I have had good results getting rid of congestion with elderberry extract. Take a shot of it or put it in your tea or juice. Some zinc at the first sign of cold has helped me, too.
Celeste
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"Dancers Against Cancer" in the Eugene, OR Komen Race for the Cure 2010
Diagnosed 8/7/08 with stage 3 invasive ductal carcinoma, micropapillary pattern, Her2 3+, ER+,PR-, grade II, positive lymph nodes.
Received 6doses of Taxotere, Carboplatin with Herceptin continuing for a year...DONE.
1/28/09 Left Modified Radical Mastectomy, Right Simple Mastectomy.
Surgery pathology: No invasive carcinoma present and 17 lymph nodes removed all negative! Only small amount of carcinoma in situ in left breast.
March/April '09, Radiation to left chest wall.
Currently involved in Neratinib clinical trial.

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and wisdom too,
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from a word to a word
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Old 11-15-2008, 05:08 PM   #7
kcherub
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Thanks, Jacqueline!

I hate to be a baby about a simple cold, but it's not fair.

Take care,
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Krista
Diagnosed 3/29/2007 @ age 34
Stage 1, Node Neg. (SNB), Grade 2, 1.4 cm. IDC
ER/PR 90%+ HER2 +
6 TCH started 5/25/2007, ended after #5 due to steroid "reactions" and neuropathy in feet and hands
BUT--#6 CH w/o Taxotere
Begin Herceptin alone 9/28/2007
30 rads completed 12/19/2007
Finish Herceptin 5/9/2008
Stopped Tamoxifen early--HATED it.
Married 17 years
13-year old son
3 embies on ice (from 1999)
GA, USA

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Old 11-15-2008, 05:08 PM   #8
kcherub
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Bonnie,

Okay...how about 10?!?

Take care,
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Krista
Diagnosed 3/29/2007 @ age 34
Stage 1, Node Neg. (SNB), Grade 2, 1.4 cm. IDC
ER/PR 90%+ HER2 +
6 TCH started 5/25/2007, ended after #5 due to steroid "reactions" and neuropathy in feet and hands
BUT--#6 CH w/o Taxotere
Begin Herceptin alone 9/28/2007
30 rads completed 12/19/2007
Finish Herceptin 5/9/2008
Stopped Tamoxifen early--HATED it.
Married 17 years
13-year old son
3 embies on ice (from 1999)
GA, USA

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Old 11-15-2008, 05:10 PM   #9
kcherub
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Debbie,

They haven't said anything about my counts being off. Most of the time I have to ask how my blood counts were! I think they just assume to say something if they are "off."

I own a children's boutique, so I am around kids all the time! That has to be where I am picking it up, as DH and Cooper haven't been sick! Coop has had a stuffy nose, but his is more allergies than a cold.

I just hope it passes, as I am tired of being depressed about being tired. LOL

Thank you and take care,
Krista
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Krista
Diagnosed 3/29/2007 @ age 34
Stage 1, Node Neg. (SNB), Grade 2, 1.4 cm. IDC
ER/PR 90%+ HER2 +
6 TCH started 5/25/2007, ended after #5 due to steroid "reactions" and neuropathy in feet and hands
BUT--#6 CH w/o Taxotere
Begin Herceptin alone 9/28/2007
30 rads completed 12/19/2007
Finish Herceptin 5/9/2008
Stopped Tamoxifen early--HATED it.
Married 17 years
13-year old son
3 embies on ice (from 1999)
GA, USA

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Old 11-15-2008, 05:11 PM   #10
kcherub
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Celeste,

Do I get those at the health food store? I have always wondered about taking a lot of different things--not knowing if something will work against something else. Maybe ABB will chime in, as I know she knows about these things.

Take care,
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Krista
Diagnosed 3/29/2007 @ age 34
Stage 1, Node Neg. (SNB), Grade 2, 1.4 cm. IDC
ER/PR 90%+ HER2 +
6 TCH started 5/25/2007, ended after #5 due to steroid "reactions" and neuropathy in feet and hands
BUT--#6 CH w/o Taxotere
Begin Herceptin alone 9/28/2007
30 rads completed 12/19/2007
Finish Herceptin 5/9/2008
Stopped Tamoxifen early--HATED it.
Married 17 years
13-year old son
3 embies on ice (from 1999)
GA, USA

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Old 11-15-2008, 10:55 PM   #11
DianneS
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You can check with your doctor (not that they'd know anything about something natural) but I was told by a naturopathic doctor that taking siberian ginseng even during chemo helps the immune system, so it's got to be an even bigger boost to the immune system when you're done with chemo. I'm also drinking matcha tea (tastes like yuck) which also doesn't interfer with chemo.

The siberian ginseng looks like little pieces of bark and tastes, well, like dirt, kind of you steep 1 tsp in a cup of really hot water for 15 minutes, strain and drink. You can drink 1-3 cups a day. It's an acquired taste...

Just thought I'd throw that in if anybody wants to give it a try.
Hope you're all feeling well soon!

Diannes
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Old 11-16-2008, 12:50 PM   #12
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Wink

Hi Krista -
Hope you are feeling better this weekend.
What my onc told me is that when I feel a cold coming on, try to shield myself from further germs joining the party. Then they will get together and REALLY make me sick! He wanted to avoid giving me antibiotics.

Number one is LOTS of handwashing during the day.

So, what I did/do (we also have a store) is to get some of the antibacterial wipes and go over as much of the counter, cash register, phone, etc as I can. Before those wipes came out I would keep a spray bottle of bleach solution to spray around at the end of the day so the bleach fumes could dissapate over night.

And anyone who came in and seemed to be sick, I tried to keep my 10 foot distance from them. I heard that is the distance that the airborne germs can't reach. (How true, I don't know.)

I use Emergen-C vitamins. They are in a powdered form and I really DO notice getting over whatever I get faster when I use those. Also drink a "detox" type tea and this helps to break up phlem faster.

Good luck with all the friendly advice here!
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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 11-16-2008, 04:03 PM   #13
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Wink Anyone else getting a cold over and over??

Do you have low white blood counts? My doc reminded me several times that the white blood counts and the immune system are essentially the same.
If you are in treatment the chemo might be lowering your white blood counts. The white blood counts are what fights infections including colds. You might want to do whatever it takes to pump that up. All the old fashioned home remedies help. Hot or warm beverages, lots of soup, lots of fruit, veggies, ginger, garlic, onions, lots of mushrooms, honey, and lots of water. Stay away from crowds and strong air conditioning if you live in a warm climate. Good thoughts going your way.
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12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
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Old 11-17-2008, 09:12 AM   #14
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I notice you finished Herceptin in May -- about 6 months ago. You may need more time to fully recover from all the treatment we Her2s undergo. Be very nice to yourself.
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IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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Old 11-18-2008, 05:48 AM   #15
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I am also getting frequent colds. I had one early Sept., another in Oct. that wiped me out over 2 weeks. Now I feel another one trying to get a grip.

I get depressed too - feeling tired, achy, hating the time spent in bed "wasted" when I really want to be up & out doing the things I planned. I'm more resentful when I'm feeling miserable from a cold than from chemo. Chemo I expect to have to have down time from, but the pesky frequent cold seems so much worse because it's something I maybe could have avoided.

I too think it's harder now to get over a cold -- seems to last longer & to take over more of my life. Trying not to take time off work, but aware of spreading my germs if I go to work. Hating it when I'm too sick to enjoy a weekend off. To top it off I have my son, daughter-in-law & 2 kids, 16 months & 2 months all living with me. They bring home colds & when it's in the house it always gets me too. Wish I could live in a bubble!

When I first feel symptoms I start taking vit. c & zinc, drink airborne, but I don't know if it does any good.

I sure set off on a rant about this, but your post struck a frustrating chord for me! I empathize with your frustrations too. After we have a cure for cancer I hope next is a cure for the common cold.
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Pam
6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
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Old 11-18-2008, 06:33 AM   #16
kcherub
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Thanks, everyone!!! I agree that I feel more depressed having a cold and for the same reason! I should be getting healthier, not ending up with each and every little bug out there!!!

I think the cough is the most frustrating. I want to call my ONC., but then again I a) don't want to have any sort of x-rays, etc. this close to the holidays (too much stress and not enough enjoyment with that) and b) since I can constantly feel stuff dripping down the back of my throat, causing the tickle that causes me to cough, I know the cough has a mechanism making it happen.

During the day, I have an intermittent cough, but the morning is the worst. I wake up with a tightness in my chest, but it could also be me anticipating a coughing fit. I cough pretty violently for a few minutes (to the point of tears in my eyes) until I feel the stuff in my nose break up and am able to blow it all out. After that, the coughing stops (except for the drip-related cough). I know that most of us go by the 2-week rule for symptoms, but should I be all that concerned when there is another issue going on?

Meaning, if I were just having a coughing fit with NO drip, I would be much more worried, and would call my ONC. They are used to it, I assure you. Sometimes, I just need someone to bring me down and tell me--it's a sinus issue, silly. Believe me, I have looked up "lung mets symptoms" about 15,000 times and it's all pretty muddy...

Thanks so much and take care.
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Krista
Diagnosed 3/29/2007 @ age 34
Stage 1, Node Neg. (SNB), Grade 2, 1.4 cm. IDC
ER/PR 90%+ HER2 +
6 TCH started 5/25/2007, ended after #5 due to steroid "reactions" and neuropathy in feet and hands
BUT--#6 CH w/o Taxotere
Begin Herceptin alone 9/28/2007
30 rads completed 12/19/2007
Finish Herceptin 5/9/2008
Stopped Tamoxifen early--HATED it.
Married 17 years
13-year old son
3 embies on ice (from 1999)
GA, USA

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Old 11-19-2008, 12:28 AM   #17
SoCalGal
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Krista-
I am a professional hypochondriac. First thought I had was you have a kid. Kids are full of cooties. Being in a kids' store is like being on a cootie farm. When my kids were young I was always either getting a cold or getting over a cold. You need to wipe everything all day with antibacterial wipes. Get a flu shot. And also try some vitamins or green tea to boost your immune system. Once you've had cancer you should never have to have any other ailments or illnesses. I think it's grossly unfair. I also know that being sick with a cold is like a big reminder of what could happen. Try not to let your mind play so many games. Put up little signs that say "it's just a cold".

Last night I had dinner with my man and his kids - ages 10 & 12. I picked up his son and we drove together. After a whole night of hanging out - at 9:00PM his son says he feels sick like he has the flu. Today he had fever and chills and the whole shebang. You can imagine where my mind has taken me. There is nothing I can do because I was exposed. I can only hope and pray I somehow won't get his cooties Even typing this story makes me feel creepy. HA!

Feel better.
xo Flori
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1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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Old 11-19-2008, 05:09 PM   #18
Andrea Barnett Budin
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Location: LAND OF YES! w/home in Boca Raton, Florida Orig from L.I., N.Y. Ever hovering IN THE NOW...
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Smile STEERING CLEAR OF COOTIES... no laughing matter!

Oh, Krista,

A cold is minor yet you feel truly horrible. I have noted that Pinkie seems to get frequent really debilitating colds/flus -- the sore throat thing and the chills and all that you describe. The cough is concerning and seems to last way too long. I worry. Like a Mom.

And yes, of course, a pain in my arm *COULD* mean I am having a heart attack, or lymphedema is threatening and my mind goes in all those dark places (as a bc patient). Even 13 yrs out...

I have one good vein in my good arm. It is at my wrist. They accessed it for my last CT scans (in June). I have a giant egg bulging from it. He went in and was successful in only one try! Yea! I felt absolutely no pain. Double yea!! BUT -- apparently the needles went beyond the vein and created a hematoma. It will take some time to dissipate, i was told my onc. It is slightly less bulging. My mind wonders did contrast escape into my body? Have we created a new major issue? Blah, blah...

I hear you, Krista, is my point. We all hear you.

What I do daily is -- first, wash my hands thoroughly numerous x during the day. Hot water. Lots of soap. It is the first thing I do when returning home. Every single x.

I also, daily -- take multiple vitamins. As you know. Those that I believe help ward off colds and such are: Vit C -- 1,000, Co-Enzyme Q10 -- 150X2, Echinacea w/golden seal -- 100X2 (1 week on this and then stagger w/1 wk on Thymulus 750 w/Astragalus 250X2). Plus I take Grapeseed Extract -- 150, Green Teax3, N-Acetyl Cysteine (rids body of toxins), Omega 3 Mega EFA -- 800 and DHA -- 400 x 2, RM-10 Immune System Proten-zyme Mushroom Blend -- 1165 w/Selium -- 200 X 2-3 a day(on empty stomach), Zinc -- 30.

I drink 10 8-oz glasses of bottled water a day -- to flush out any toxins. It makes your skin moist too.

Zicam is very beneficial w/colds/flu!



There are a number of mushroom blends that are great. If, God forbid, I was midst a crisis I would be on one of those. ie. Shitake and/or Ave w/an accent over the e -- 1 packet every other day. Super powered! Also nut onc has suggested Grifon Pro Maitake-D Fraction drops, Lycopom and Neuromins (DHA) 100 -- 3 X 2. I don't feel the need to add these. Lycopom disagrees w/my belly, but has the super strength of 40 pomegranates which is supposed to be excellent! Also Peakimmune -- 250 X 2 and Glutamine -- 500 (this last of which I do take daily).

These were all recommended by nut onc, who has helped keep me and my immune system working well since '98.

Hope all this helps. I think once you've had ca, you must be super alert to contacting a range of stuff.

I hug, but don't shake hands. I kiss keppis (heads). I exchange loving energy. I move away from coughing people. I get the flu shot every yr and I just got my ev 5 yr pneumonia vaccine. My husband does this too, for many good reasons.

Sending you HEALTHY ENERGY, my Sisters all...
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 11-19-2008, 08:13 PM   #19
kcherub
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Flori...you crack me up. Thanks for the words of wisdom.

Andi...I knew you would give me a master list of things that I can try. I can't promise to do it all (I barely remember to take my Tamoxifen every night), but I will look up everything you mentioned.

Update as of today...I went to my PCP yesterday (love him--he's great and is really compassionate about my fears). I seem to have ANOTHER sinus infection. WTH?!? I had one 8 week ago! He reluctantly put me on another round of antibiotics--I say "reluctantly" because he knew I didn't want them, but felt that I really needed them. This one is AMOX. with something else in it. I will also be starting Allegra-D once I have this infection cleared up. I have kind of ignored the allergy issues since I finished chemo, as I was trying to deny that I had suddently developed allergy issues. Chemo--the gift that keeps on giving.

I am already coughing less, and when I do, it's productive. I can still feel some draining in the back of my throat, but it does seem better, as the constant "tickle" is gone. I hope that by next week, I am back to my normal self. Well, as normal as I can be.

As for the handwashing, I am a recovered OCD'r, so I have that one down pat. I guess it's no holding strange babies for a while, or at least until I get the allergies (which I wonder if can make your immune system less resistant, since your body would be fighting them) under control.

Love to you all...

Oh--and there was Diflucan thrown in there, too. We all probably know how that goes. LOL
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Krista
Diagnosed 3/29/2007 @ age 34
Stage 1, Node Neg. (SNB), Grade 2, 1.4 cm. IDC
ER/PR 90%+ HER2 +
6 TCH started 5/25/2007, ended after #5 due to steroid "reactions" and neuropathy in feet and hands
BUT--#6 CH w/o Taxotere
Begin Herceptin alone 9/28/2007
30 rads completed 12/19/2007
Finish Herceptin 5/9/2008
Stopped Tamoxifen early--HATED it.
Married 17 years
13-year old son
3 embies on ice (from 1999)
GA, USA

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Old 11-20-2008, 11:31 AM   #20
Vic
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Cold season suggestions

I usually want to get rid of any cold symptoms asap, so I start dosing with a few things:

Esberitox (was recommended by Cancer Nutrition Center of America's nutritrionist as being very good). It can be purchased at health food stores and you chew nine small tasty tablets, three at a time throughout the day.

Zicam is a gel spray that you put in your nose to ward off cold germs.

Airborne (I use this when I travel, too).

Emergen-C (my fave is raspberry flavor) and I love this product. The B vitamins give me a bit of a zing, so don't take it too late. It really does give an energy boost. Also, available at health food stores.

Fresh squeezed orange juice. I do this daily anyway.

Gargling with warm salt water never hurts.

Halls Defense Vitamin C supplement drops (Assorted Citrus) is good for a dry, scratchy throat.

Hope you feel better,

Vicki
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Diagnosed 12/03 at age 53
1.5cm tumor, ER-PR-, Her2 3+(rt side)
Stage 1B, Three negative nodes from Sentinel Node Biopsy
Paget's of the nipple, Infiltrating Ductal Carcinoma and DCIS of the rt breast
Bloom-Richardson score 8/9, P53+ 60-70%, Ki-67+ 30-40%
Skin-sparing mastectomy with immediate lat-flap reconstruction and saline implants, 1/04
Chemo: FAC, five sessions every three weeks Feb.-May 04, then switched to HTC weekly for 12 weeks, June-Aug 04
Zometa every 6 months for osteopenia, started April 09
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