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Old 01-26-2013, 03:39 AM   #1
Gaver
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Smile Needed some advice

Hello ladies !!

am back after a long absence !! mom s done with her 4th chemo !! cant believe how the time flies...seems like yesterday we were so apprehensive about her 1st chemo and now here we are done with the 04th one already.....

wont lie and say it wasn't difficult and trying but we are doing it together as a family with all our strength and love and taking it one day at a time !!

now asking for some help....mom s mouth has gone very bad...she complains her mouth is like sawdust and everything tastes bitter ....anyone else gone through this ?? how can i help her ??

also is it true Herceptin sometimes causes weight loss or is it the chemo after effects??

any help for the bonepain caused by the Fligrastim injections other than a hotwater bag ??

and lastly my mom is very worried that just the Herceptin infusion is as bad as the ones with the T & C ?? is that true ??? Ladies who have bravely gone through H after T & C would really appreciate your insight n experience on this

thank you so much and keep fighting !
__________________
Warm regards,

Geetanjali,Gaver's daughter one of the strongest women I know n a cancer fighter
---------------------------------------------------
11/10/2012 mom was diagnosed with a 3 x1.5 cm malignant lump in upper quadrant left breast with a 1x1.5 swollen left axilla node
12/10/2012 confirmed carcinoma left breast lump through FNAC
15/10/2012 CT Scan clear Bone Scan clear no Mets anywhere (Thank God)
16/10/2012 Core Biopsy Results show Stage IIB Grade III ER + 95% PR + 5% N Her2NEU +++
23/10/2012 MRM done Entire breast along with level I n level II Axilla nodes removed.

31/10/2012 sample biopsy 01/13 nodes positive

TCH regime Taxotere(Docetaxel) Carboplatin Herceptin

T C & H for 6cycles n H alone for another 11cycles after that[/B]

6 Cycles TCH--done 12 cycles H done
05 cycles H to be done


~~Eowyn,The Return Of the King,LOTR : "Courage,Merry,courage for our friends "
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Old 01-26-2013, 05:40 AM   #2
LeahM
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Re: Needed some advice

I too had terrible mouth problems while on TCH. Nothing tasted good and swallowing was difficult. A week after infusions I went back to the cancer center for some re-hydration. Meanwhile I would use an alcohol free mouthwash and also rinse with salt/baking soda water. It would eventually go away. All I can say is she should eat/drink whatever she can handle.

I have had 3 or 4 Herceptin infusions since the end of TC. No problems with that except for feeling "chilled" the next day and a constant runny nose. I lost weight on TCH but not on H alone.

Also once I was done TCH and the subsequent shots my bone pain went away. I was afraid some of the bone pain was due to Herceptin but I haven't had that issue since about a month after my last TCH.

I hope this helps. Hang in there, your mom is almost done!
Best Wishes
Leah
__________________
39 year old wife, mother of one and nurse.
April 20, 2012: Dx Invasive Ductal Carcinoma
April 25, 2012: ER+(5%), PR-, HER2+++
May 10, 2012: BRCA 1,2 Negative
May 23, 2012: MUGA Scan EF 70%
May 31, 2012: B/L Mastectomy. 2/2 nodes removed and CLEAR!! Power Port placed. 2 Drains. 2 Expanders placed
June 5, 2012: Drains OUT! Ahhhh..
June 12, 2012: Final Pathology Report, .8x.3cm tumor. Micromets to 1 node .35mm under cytokeratin staining. Stage 2A. Onc says "you are lucky to have found this early"
July 10, 2012: Started 6 rounds of TCH with weekly H
Sept 5, 2012: MUGA 65%
Sept 20, 2012: CAT scan of brain clear!
Oct 23, 2012: LAST TC! AMEN! Continue Herceptin every three weeks until July 2013.
Nov 19, 2012: Port out!
Dec 5, 2012: Started radiation
Dec. 10, 2012: MUGA 65%
Dec. 13, 2012: Turned 40. BEST BIRTHDAY EVER!
Jan 23, 2013: Last radiation. Told I am NED. Continue Herceptin every three weeks till July 2013.
Jan 29, 2013: Begin 5 years of Tamoxifen.
Feb 28, 2013: CT Scan with Contrast of lungs. 5mm and 4mm nodules of unknown origin. Rescan in 3 months.
Mar 6, 2013: EF 60%
May 8, 2013: Exanders out, implants implanted...abd. lipo and fat moved up. Girls are looking good!
June 3, 2013: CT Scan with Contrast of lungs. Previous nodules gone. New nodules (2mm and 3mm) found. Rescan in 3 months. So sorry I opened this can of worms...
June 11, 2013: EF 60%
June 25, 2013: Last Herceptin. wow...
Aug 20, 2013: Tumor markers within normal limits. Xray to sore left ribs shows no disease or fractures.
Sept 9, 2013: CT of lungs shows no disease. Closing this can of worms and moving on.
Nov 20, 2013: Tumor markers within normal limits. Severe Vit D deficiency, started on prescription Vit. D. Blaming chemo for this.
Feb 2014: Tumor markers within normal limits.
May 2014: Tumor markers within normal limits. Graduated to twice yearly onc appts.
Oct 2014: Tumor markers within normal limits.
May 2015: Tumor markers WNL. Bone density scan fine. Bone scan and xray of ribs shows "something" 4th right rib. Could be healed fracture but if it is healed why does it hurt?
Nov 2015: Tumor markers WNL. Follow up bone scan clear.
Feb 2016: Syncope! WTF? Dizzy too. Brain scan clear, ECHO EF 60%, Halter Monitor shows heart is fine. Viral? I will never know.
June 2016: Tumor markers WNL.
Oct 2016: Stabbing pain right eye. Long story short, trigeminal neuralgia.
Nov 2016 Brain MRI clear.
Jan 2017: Tumor markers WNL, still getting weird pain right rib area, and sometimes right upper chest. Xray x2, Bone Scan, Breast MRI all clear. Scar tissue? Rads. I may never know.
www.onmywaytosurvivorhood.blogspot.com
www.thechemobag.com
www.facebook.com/thechemobag
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Old 01-26-2013, 06:07 AM   #3
Gaver
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Re: Needed some advice

thank you so much Leah !!!!!!!! am making my mom read this !!!!!!!!
__________________
Warm regards,

Geetanjali,Gaver's daughter one of the strongest women I know n a cancer fighter
---------------------------------------------------
11/10/2012 mom was diagnosed with a 3 x1.5 cm malignant lump in upper quadrant left breast with a 1x1.5 swollen left axilla node
12/10/2012 confirmed carcinoma left breast lump through FNAC
15/10/2012 CT Scan clear Bone Scan clear no Mets anywhere (Thank God)
16/10/2012 Core Biopsy Results show Stage IIB Grade III ER + 95% PR + 5% N Her2NEU +++
23/10/2012 MRM done Entire breast along with level I n level II Axilla nodes removed.

31/10/2012 sample biopsy 01/13 nodes positive

TCH regime Taxotere(Docetaxel) Carboplatin Herceptin

T C & H for 6cycles n H alone for another 11cycles after that[/B]

6 Cycles TCH--done 12 cycles H done
05 cycles H to be done


~~Eowyn,The Return Of the King,LOTR : "Courage,Merry,courage for our friends "
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Old 01-26-2013, 10:52 AM   #4
NanaJoni
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Re: Needed some advice

Oh yes - food and chemo just don't mix well. I remember trying to explain to my husband that bread tasted like drywall - and him asking how did I know what drywall tasted like. Funny now - not so much then. But it really did mess up my sense of taste. I discovered that things that were sweet and cold still tasted like they should and ate lots of sherbert, watermelon and other cold fruits, milk shakes fortified with extra protein powder, etc. I couldn't even stand to smell meat being cooked so tried to eat veggies sauted, etc. Luckily, it all subsides fairly quickly and only a few weeks after finishing chemo, things gradually started to taste better. As for Herceptin, it really has very few side effects for most people: some problems with finger and toe nails, a really runny nose, mild fatigue or flu-like symptoms for the first few days after treatment. But nothing like the other chemos. I took a Zyrtec generic every day during Herceptin and it helped a little with the nose drips and extra-strength Tylenol for the aches. Tried to manage rest and mild exercise. As for the bone pain, I took Neulasta shots and only had some bone pain for a few days each time. Mostly manageable with Tylenol but did have Tramadol for the worse pain. Hope this helps and so glad your Mom is done with the tough part. Give her regards and congratulations.
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Joni -64 yrs old -
3/01/10: found lump in rt.breast
3/12/10: mammogram/ultrasnd/biopsy-invasive bc & DCIS; 2 tumors (2cm er-/pr-/HER2-& 1.8 cm er-/pr-/HER2+); grade 3;poorly differentiated
3/24/10:sent.node biopsy clear
3/31/10:bi-lateral mx.;atypical ductal hyperplasia-lft side
4/21/10:wound revision-infection/scarring 4/28/10:seromas both sides
5/21/10:port installed,TCH chemo (6 x 3 wks); Herc,-1yr; 33 rad tx after chemo
07/2010: port not working-2nd port didnt'work;3rd port opposite side.
07/2010: 2 weeks after 3rd port surgery, threw 3 pulm. emboli-IVC filter installed; warfarin
08/2010: hospitalizations w/3 of chemos; decision to stop after 4th-on to radiation in Oct 2010;Herc cont.
12/03/2010 - finished 33 rads Hooray!! cont. Herc. every 3 wks
4/2011 - pneumonia ??? Nope-radiation pneumonitis. No more Herc.
5/2011 - NED!!! port out.
8/2011 - clean PET & CT scans.Still NED
7/2012 - Still NED/very blessed.
2/2013 - 6 mos checkup-all clear. CA2729 down frm 13 to 11.
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Old 01-26-2013, 03:47 PM   #5
adelay
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Re: Needed some advice

I know this may sound weird but...green apple jolly rancher candies tasted so good and got rid of that metal yucky taste I seemed to always have during my chemo. Also, I would eat off of plastic utensils instead of metal and that seemed to help too. Hang in there, almost done!
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~Anna

DX April 2009 age 40
IDC Triple Positive
7 of 14 nodes positive
Lumpectomy May 2009
Port May 2009
AC done in Sept 2009
T done Dec. 2009
Herceptin (should finish Oct. 2010)
Mastectomy January 2010
Radiaition x 33 done April 2010
Tamoxafin for five years
Herceptin done!
Still clear May 2011
3 years out May 2012, all good!
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Old 01-27-2013, 07:36 AM   #6
KsGal
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Re: Needed some advice

NanaJoni described it to a T. Everything did taste like drywall! I couldn't think of that at the time, so told my family everything tasted like flour. Like her, ice cream and milkshakes and things of that nature did seem to taste much better. I also used the Boost shakes and kept them really cold. I drank them with a straw and they were a real treat for me. As far as the Herceptin, it was nothing like the chemo at all. I had very few side effects with the Herceptin. I did have some nail changes. They got weak and would bend and break easily. Also had the runny nose that was just about like water. Never knew when it was going to start pouring out of my face, so had to carry Kleenex everywhere I went because it could get a bit embarassing out in public! When I went to Herceptin only, I was able to work my normal schedule at work with pretty much no change in how I felt at all. Big hugs to you and lots of prayers.
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Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
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Old 12-04-2013, 12:11 AM   #7
MaryDe
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Re: Needed some advice

Cotton mouth is a real nuisance .. Had it when on A & Tx with Herceptin added when I started Cytx in 2011-2012 now out one yr from treatment BC came back, on Herceptin & Kadcyla for a year and cotton mouth is almost constant... Drink lots of water especially while eating...Biotene spray, mouthwash and gum help... My daughter found Halls 'mouth watering drops and they work better than the gum, but rather hard to find.
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Old 12-04-2013, 12:14 AM   #8
MaryDe
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Re: Needed some advice

Also I ate a boatload of gummies lifesavers when I had mouth sores, yummy for gummies!...also stayed completely away from carbonated drinks, they can really get your mouth stirred up.
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Old 12-04-2013, 12:19 AM   #9
MaryDe
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Re: Needed some advice

Someone asked about foot & leg cramps...chiropracter (sp?) suggested maganeseium and my oncologist said OK.. It has helped a lot. The last time it was charley horses at night GP said to drink tonic water with juice and it stopped the whole thing in about a week.
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Old 12-04-2013, 06:11 PM   #10
donocco
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Re: Needed some advice

Mary

The tonic water probably contains Quinine in
very small amounts. I was curious if such a small amount of
Quinine would be beneficial to treat muscle cramps. Apparently, at least in some people, it can.
This info may come in handy in the future.
Quinine used to be a cheap OTC drug and I sold lots of
it in my pharmacy for leg cramps. Its an RX drug now.

Paul
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Old 12-05-2013, 12:19 AM   #11
MaryDe
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Re: Needed some advice

My GP said it was great especially for the intense night-time charley horses I had been having for about three weeks straight, it stopped them and I was only taking about 1/2 cup tonic water to 1/2 cup orange or crabapple juice every night before bed. When they had stopped For awhile I would just add some to a bottle of flavored water three times a week. Crazy but very worth a try.
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