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Old 04-27-2013, 01:35 PM   #21
R.B.
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Re: Libido is lousy and ...

There are quite a few threads over the years discussing this issue generally, including this one in case you have not seen it, and of any relevance.


There is a very poignant poem I saw on another board, Cancer Lynx on this thread.


http://her2support.org/vbulletin/sho...light=bone+dry


http://www.cancerlynx.com/bonedry.html


This thread appears in diet and nutrition


http://her2support.org/vbulletin/showthread.php?t=46532


There are others too from what I recall.

Last edited by R.B.; 04-27-2013 at 01:41 PM..
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Old 04-27-2013, 04:48 PM   #22
IrvineFriend
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Re: Libido is lousy and ...

Regarding UTI's, they are more common during chemo. I still enjoy regular sex, especially when chemo sick as it takes my mind off the discomfort of that. But I always shower before sex, use antibacterial soap, urinate beforehand and immediately afterward. Sounds like a lot of work but a small price to pay to have some sense of normalcy in my life and avoid another doctor appt. I also limit actual intercourse timewise to decrease the chance of a UTI. So boyfriend has to really get on with it!
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Julie
Live in Orange County, CA

Diagnosed with DCIS Oct. 2012

Bilateral Dec. 19, 2012
IDC, ER/PR-, Her2+++, Grade 3
Stage IIIa
15.6 cm
4/14 nodes + macrometastases
First thing each morning, I try on my bathing suit. Then, nothing worse can happen the rest of the day.
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Old 04-27-2013, 08:33 PM   #23
AlaskaAngel
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Question Re: Libido is lousy and ...

Ospemifene was recently approved for menopausal women with vulvar/vaginal atrophy (dryness and thin tissue), and the trial results were favorable for dealing with VVA.

However, it is not recommended for breast cancer patients in that it has not been thoroughly tested for breast cancer patients. It is a selective estrogen receptor modulator (which is what tamoxifen is), but it is not used for preventing breast cancer recurrence like tamoxifen is. (I have no idea why not, but if anyone else does I hope they will explain why not. Lani??)
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Dx 2002 age 51
bc for granny, aunt, cousin, sister, mother.
ER+/PR+/HER2+++, grade 3
IDC 1.9 cm, some DCIS, Stage 1, Grade 3
Lumpectomy, CAFx6 (no blood boosters), IMRT rads, 1 3/4 yr tamoxifen
Rads necrosis
BRCA 1 & 2 negative
Trials: Early detection OVCA; 2004 low-dose testosterone for bc survivors
Diet: Primarily vegetarian organic; metformin (no diabetes), vitamin D3
Exercise: 7 days a week, 1 hr/day
No trastuzumab, no taxane, no AI
NED
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Old 05-02-2013, 03:18 PM   #24
kvogler
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Re: Libido is lousy and ...

Just curious because I didn't see the answer after reading this thread.......did any of you get your periods back after treatment and if so, did you find some of these vaginal issues improved some? I'm 36 so I might get periods again, or maybe not. I'm going to ask my onc what she suggests also for my case. I'm not ready to call it quits on this part of my life too! Darn it all.
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Old 05-03-2013, 04:00 AM   #25
6Cats
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Re: Libido is lousy and ...

Julie,
You limit the "time"?? How long is too long?

Does this mean your boyfriend actually enjoys it when you have chemo? lol
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Lynn

3/14/13 - Mammo & Dx Biopsy, Rt Breast
3/15/13 - Path results -- Invasive Ductal Carcinoma, ER-/PR-, HER2++
3/29/13 - Lumpectomy & sentinal lymph node bx with balloon placement for MammoSite radiation
4/10/13 - Hemorrhage from MammoSite location, but completed last radiation treatment
4/12/13 - Final Path, Stage 1c, Lymph node negative, Grade 2 with focal DCIS, 2 tumors, 1.8cm & 6mm
4/12/13 - Treatment Plan determined DD AC w/D2 Newlasta -> TH -> H - Yipes 62 weeks total!
4/23/13 - PortaCath Placement
4/25/13 - Began AC w/ D2 Neulasta
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Old 05-03-2013, 04:41 AM   #26
LeahM
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Re: Libido is lousy and ...

Kvogler, my chemo ended in Oct. My period came back mid Jan. I started tamoxifen Jan 29 and have gotten my period twice more since then. Completely irregular. And the tamox dries me up like the Sahara. Even tampons are painful.
Probably not what you wanted to hear but it's the (my) truth.
All the best
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 05-03-2013, 07:07 AM   #27
norkdo
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Re: Libido is lousy and ...

OK. If everyone is embarrassed but still suggesting solutions I will add my help here. Don't bother with KY jelly. It doesnt last. it is like glue. Use a silicone based lubricant. thinner and much much much more long lasting. Seriously a different world from KY. Go to the Naughty but Nice store or whatever it is called there in the States at your local mall.
http://ca.askmen.com/dating/love_tip_150/188b_love_tip.

Also, tell the husband that you want to make out (after you buy the product) using the lube all over your legs and torso but you have to be the only one who initiates the attempted penetration and stops it. An experiment. You have to be the one with no fear of penetration if you get warmed up.
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fall 2008: mammo of rt breast worrisome so am asked to redo mammo and have ultrasound of rt breast.I delay it til january 2009 and the results are "no cancer in rt breast. phew."
found plum sized lump in right breast the day before my dad died: April 17th 2011. saw it in mirror, while i was wearing a top, examining my figure after losing 10 lbs on dr. bernstein diet.
diagnosed may 10 2011

mast/lymphectomy: june 7 2011, 5/20 cancerous nodes. stage 3a before radiation oncologist during our first mtg on july 15th says he found cancer on the lymph node of my breast bone. Now stage 3b.
her2+++, EN-, PN-. Rt brst tumors:3 at onset, 4.5 cm was the big one
chemos: 3fec's followed by 3 taxotere, total of 18 wks chemo. sept: halfway thru chemo the mastectomy scar decides to open and ooze pus. (not healed before chemo) eventually with canasten powder sent by friend in ny (illegal in canada) it heals.
radiations:although scheduled to begin 25 january 2012, I am so terrified by it (rads cause other cancers) I don't start til february, miss a bunch, reschedule them all and finally finish 35 rads mid april. reason for 7 extra atop the 28 scheduled is that when i first met my rads oncologist he said he saw a tumor on the lymph node of my breastbone. extra 7 are special kind of beam used for that lymphnode. rads onc tells me nobody ever took so long to do rads so he cannot speak for effectiveness. trials had been done only on consecutive days so......we'll see.....
10 mos of herceptin started 6 wks into chemo. canadian onc says 10 mos is just as effective as the full yr recommended by dr. slamon......so we'll see..completed july 2012.
Sept 18 2012: reconstruction and 3 drains. fails. i wear antibiotic pouch on my job for two months and have 60 consecutive days visiting a nursing centre where they apply burn victims' silver paper and clean the oozing infection daily. silicone leaks out daily. plastic surgeon in caribbean. emergency dept wont remove "his" work. He finally appears and orders me in into an emergency removal of implant. I make him promise no drains and I get my way. No infection as a result. Chest looks like a map of Brazil. Had a perfectly good left breast on Sept 17th but surgeon wanted to "save another woman an operation" ? so he had crashed two operations together on my left breast, foregoing the intermediary operation where you install an expander. the first surgeon a year earlier had flat out refused to waste five hours on his feet taking both boobs. flat out refusal. between the canadian health system saving money and both these asses, I got screwed. who knows when i can next get enough time off work (i work for myself and have no substitute when my husband is on contract) to get boobs again. arrrgh.


I have a blog where I document this trip and vent.
www.nora'scancerblog.blogspot.com . I stopped the blog before radiation. I think the steroids made me more angry and depressed and i just hated reading it anymore
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Old 05-03-2013, 06:03 PM   #28
europa
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Re: Libido is lousy and ...

ASTROGLIDE! I have been trying different things and hands down, ASTROGLIDE. it is water based but it lasts. And if you dry up with it you just need to have a spray bottle with WARM water. Just a little spritz on your man's thingy and you are back in business.
BUT do not use too much because it will be a slippery and noisy mess.
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DX 10/2011
PET Scan + MRI 10/2011
Lumpectomy 11/11/11
Stage 2B +++ ER+(10%), PR+(5%), HER2+++(1 positive node, 1 micromets to second node)
AC started 12/2011 ended 1/2012
Taxol + Herceptin weekly for 12 weeks ended 4/2012
30 zaps of radiation done 6/2012
Tamoxifen 6/2012
every 3 weeks of Herceptin for another year.
Metformin Trial 8/12
10/12 MRI- CLEAR
01/13 BRAIN MRI- CLEAR!
01/13 Neck MRI- CLEAR!
FINISHED HERCEPTIN 1/9/2013...Woot Woot
Starting Walter Reed Vaccine Trial 2/13
CT Scans + ultrasound of abdomen CLEAR-5/13
02/2015 through 11/2015 emergency D&Cs for Tamoxifen induced uterine polyps which caused uncontrollable hemorrhaging
12/2015 blood clot to left leg caused by Tamoxifen. No longer taking it. On Xarelto, a blood thinner
12/2015 Ablation to prevent hemorrhaging from potential issues with Tamoxifen residue in my system
1/2016 continuing journey without hormonal therapy. Reevaluating the option of a hysterectomy and oopherectomy.
4/1/2018 2mm stroke. Yes, stroke! No cause ever found but they believe it was a migraine that went bonkers and created a tiny clot. No deficits. I was back to normal with 24hrs. Now on baby aspirin for life.
7/27/2018 hysterectomy and oopherectomy
01/07/2019 Mastectomy and expanders put in
3/22/2019 Vtach, almost died. Cause unknown.
7/22/2019 New perky boobs put in
7/21/2020 Off of all drugs but a baby aspirin because of the stroke in 2018.


www.mychemobag.org
www.facebook.com/mychemobag

8 YEARS NED
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Old 05-09-2013, 10:49 PM   #29
starwishn2
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Re: Libido is lousy and ...

Thanks for all the suggestions! I've written them down and am going to check them out. I love that so many are not shy to write about their situations and what has been tried.
__________________
Diagnosed 16Dec1993 ITP (auto immune disease - low platelets)
Splenectomy 11Nov2009
Rituxen May2011
ITP playing nice
Diagnosed 3Jul2012 BC

2 cm - Grade 2 - Stage IIB
HER2+++

ER+/PR+
bilateral mastectomy 20Jul2012
Metastasized cancer found 1 lymph node
expanders placed during surgery
TCH chemo "cocktail" started 24Aug2012
every 3 weeks - 6 treatments
Herceptin - 18 treatments
LAST treatment Taxotere & Carboplatin 7Dec2012 -yay!
Continue with Herceptin 26Dec2012

Started Arimidex 01Jan2013 (for 5 years)
Surgery to remove expanders/reconstruction 18Jan2013
Infection in left breast from reconstruction/infection in most nails - SO many meds! 22Feb2013
Left implant not playing nice.... might need to remove and try again - blah! 04Apr2013
3Jul2013 - one year since diagnosis - booo cancer!

15Aug2013 LAST chemo infusion!! YIPPPEEE!!!
13Sep2013 2nd reconstructive surgery.. the FOOBs are looking good!



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