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Old 07-13-2011, 08:53 PM   #1
fauxgypsy
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Cancelled reconstruction

I had planned on DIEP reconstruction with a surgeon in Memphis. I had arranged my fall schedule so that I would have a lighter teaching load than I usually do. I told them that I had to schedule the surgery so that I would be recovered before school started. Everything was set up but the date. When we scheduled it the earliest they could do it was going to put me late getting back to school. Seems he only did DIEP one day a week on Fridays. So I asked the nurse if we could schedule it in June instead of July and I would see if my academic dean could find someone else to teach my summer courses (would lose quite a bit of income but I would have tried.) At that point the nurse told me that they could schedule it in June but it would not be set in stone.

What did she mean, I asked. Well the doctor did facial reconstruction on one day, and something else on another day and if another surgeon needed him for immediate reconstruction I would get bumped. This was after months of talking with them First I had heard that. Couldn't I take some other time of the year. I am an instructor at a community college. No I couldn't. What an I supposed to do, tell my academic dean that sometime during the year when it is convenient for my surgeon, I will be out for at least six weeks. I can't do that to my students.

I cancelled the surgery and am not sure that I can get geared up for it again. On top of that he is the only surgeon near me that does the DIEP. He may be a great surgeon but I cried myself to sllep that night. I don't know if this is standard prorcedure but I cannot plan a surgery that has a five day hospital stay and six weeks recovery without being sure of the date.
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In the world of destiny, there are no statistics.
Jan. 26- mammogram and ultrasound- suspicious lump
Mid-February- lumpectomy, infiltrating ductal carcinoma ~4.5 cm and a 1 cm DCIS, did not get clear margins, did not check lymph nodes
ER+/PR+, her2 +++, nuclear grade 3 of 3
February 20-PET scan showed something on liver. No biopsy.
March- Started carboplatin, herceptin, taxol on a four week cycle
May 3- Pet scan, with intent to do a biopsy, found nothing, liver or breast- no biopsy because there is nothing to biopsy
June 21- new onc, very concerned that there had been no biopsy,
June 18th-CAT scan, bone scan-negative
August 7th - Brain MRI-negative
August 9th- mastectomy, all pathology negative
January 2008 still NED! New oncologist -herceptin for full year after chemo- until July, and tamoxifen---negative scans since May '07
July 2008-Finished Herceptin!
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Old 07-13-2011, 11:17 PM   #2
BonnieR
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Re: Cancelled reconstruction

Unbelievable.
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Bonnie

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 07-14-2011, 12:15 AM   #3
Margaret Eleanor
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Re: Cancelled reconstruction

I am so sorry this has happened to you. DIEP is a big decision and a roller coaster ride similar to breast cancer treatment. The first two plastic surgeons I met with had egos so big there wasn't enough room for me in the exam room. The third didn't seem to have enough confidence or experience with DIEP. I think I hit the jackpot with the fourth surgeon...although I haven't had the actual surgery yet. It's scheduled for 7/26. Don't give up. This is just a bump in the road.
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Old 07-14-2011, 05:16 AM   #4
fauxgypsy
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Re: Cancelled reconstruction

I told the nurse that he had no respect for women's lives. He is trying to do too much. She tried to make me feel guilty because if I got bumped it would be due to surgery on childhood cancer patients. Even that surgery is scheduled.
I told her he needed to specialize. If they had told me all of this at the beginning it would have been different.
__________________
In the world of destiny, there are no statistics.
Jan. 26- mammogram and ultrasound- suspicious lump
Mid-February- lumpectomy, infiltrating ductal carcinoma ~4.5 cm and a 1 cm DCIS, did not get clear margins, did not check lymph nodes
ER+/PR+, her2 +++, nuclear grade 3 of 3
February 20-PET scan showed something on liver. No biopsy.
March- Started carboplatin, herceptin, taxol on a four week cycle
May 3- Pet scan, with intent to do a biopsy, found nothing, liver or breast- no biopsy because there is nothing to biopsy
June 21- new onc, very concerned that there had been no biopsy,
June 18th-CAT scan, bone scan-negative
August 7th - Brain MRI-negative
August 9th- mastectomy, all pathology negative
January 2008 still NED! New oncologist -herceptin for full year after chemo- until July, and tamoxifen---negative scans since May '07
July 2008-Finished Herceptin!
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Old 07-14-2011, 05:51 AM   #5
Mary Jo
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Re: Cancelled reconstruction

I can totally understand. I, too, struggled with the DIEP decision. I ALMOST cancelled on at least 5 occasions. My reasons though were mostly fear based however I remember one specific occasion though, where the office staff really was messing things up with scheduling and a few other things and I thought..........I AM PUTTING MY LIFE IN THESE PEOPLE'S HANDS??......NO WAY! I called and spoke to the PA first and let my concerns be known. She listened and sympathized but it did nothing to calm my fears and uncertainties. So, my husband and I made an appointment to go in and speak directly to my surgeon. I told him exactly how I felt. I tried to relay to him what a big deal this surgery was for me and that although this was "common place" for him and his staff, it surely wasn't for me and my husband.

Long story short.....I did go ahead with the surgery and have never regretted a day. However, if I were you and could get no where with the doctor and his staff, I, too, would have cancelled. You need someone who is compassionate and kind. Someone who makes you feel as if you are his only patient.

Gentle hugs and much understanding.......

Mary Jo
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Dx. 6/24/05 age 45 Right Breast IDC
ER/PR. Neg., - Her2+++
RB Mast. - 7/28/05 - 4 cm. tumor
Margins clear - 1 microscopic cell 1 sent. node
No Vasucular Invasion
4 DD A/C - 4 DD Taxol & Herceptin
1 full year of Herceptin received every 3 weeks
28 rads
prophylactic Mast. 3/2/06

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Old 07-14-2011, 06:34 AM   #6
Elizabethtx
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Re: Cancelled reconstruction

Sorry you are enduring this delay and indecision. When investigating DIEP, which I do believe in, I felt the same way. The surgeons office is very laid back and uncertain as to when they will ever schedule. All depends......well I teach and want it done and recovered in the summer. I chose not to have it done this summer for that very reason too. No gaurantees. After dealing with appt, treatment for 15 months, I didn't feel like I could be out anymore during the school year. I empathize with you and hope time will give you peace and help you figure out where to go from here!
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Diagnosed: Feb 2010 @ 46 yrs old
Invasive Ductual Carcinoma, left
2/28/10 Bilateral Mastectomy (tissue saving for future reconstruction)
3.2 cm 2/18 +lymph nodes
Stage 2b; E+/P+/Her2 +++
Nottingham score grade 2
Ki67 30%
3/2010 A/C 4 DD/2wks
5/2010 Herceptin/Taxotere 4D/3wks
8/2010 Herceptin until May 2011
Tamoxifin 20mg
9/2010 RAD 34 treatments
Pet scan Aug 2010 clear
Port removed July 2011
Bone scan, chest MRI 12/11 clear
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Old 07-14-2011, 08:38 AM   #7
BonnieR
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Re: Cancelled reconstruction

I tend to believe in "signs." And this may be a sign that this surgeon is not the right match for you. As the others have said, you need to feel comfortable and have confidence.
My husband has a saying "sometimes the situation is smarter than we are". Maybe there is a message in this situation. Keep the faith.
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Bonnie

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 07-14-2011, 09:15 AM   #8
Rich66
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Re: Cancelled reconstruction

"She tried to make me feel guilty because if I got bumped it would be due to surgery on childhood cancer patients."

Ah.. i.e. suck it up, others have it worse. Of course, the reschedule could just be due to a nip and tuck with a nice payout. Sorry..not into pitting illness against illness.

But it does make me wonder about the trend toward fewer providers and what that means in terms of timely access.
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Old 07-14-2011, 10:16 AM   #9
snolan
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Re: Cancelled reconstruction

I agree w Bonnie, this may be a sign that this is not the right PS for you. I too teach at a community college and am trying to sched my surgery when we have a break. I will be doing the latissimus flap. I don't have enough fat on my tummy (yeah right). My PS wants to wait a year after my radiation before surgery. Hoping he might agree to Christmas time since I have 2 wks off, otherwise I give up my spring break and get coverage for an additional week and hope I'm ready to come back.
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dx: DCIS 6/8/10, HER 2+ 7/26/10; Stage I Age 41
Double mast w reconstruction
6 TCH w 1yr herceptin
Tamox.
25 radiation tx
Removal of expander on L due to infection. Tried to save it had 3 bouts of antibiotics and went to see plastic surgeon 2-3x wk to get drained. Saving it was my idea not his. But lost it anyway.
Reconstruction set for December 21st,2011
Finished chemo 12/2010
Finished Herceptin 8/26/11
Reconstruction 12/21/11
Expanders exchanged for silicon 3/19/12
Nipple reconstruction 5/18/12
Nipple tatooing- 7/9/12- All done yay!
11/22/12-Went back to get scar tissue stretched to even the outside of breast, didn't work due to it being radiated skin.
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Old 07-14-2011, 10:37 AM   #10
Deb33
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Re: Cancelled reconstruction

Dump him. There are alot of good plastic surgeons, he is not the right fit for you. Can you get other PC referrals from your Oncologist or Surgeon? Or other survivors?
__________________
11/19/10 Identified swollen lymph node
1/24/11 Mammogram showed microcalcifications - no mass
2/4/11 Diagnosed ER/PR- HER2+++
2/23/11 Began TCH protocol every 21 days 6x
5/23/11 Ultrasound of originally diseased lymph node shows normal
7/25/11 Lymph node dissection - 8 of 14 show disease
7/29/11 Double mastectomy with reconstruction (expanders)
8/29/11 Begin follow up chemo - Adriamycin 4 treatments every 2 weeks and Xeloda. Self inject Nupogen shots
1/6/12 6 weeks of Radiation finished
2/13/12 Last Herceptin/remove port
3/27/12 PET/Brain Scan NED :)
8/15/12 Final reconstruction - hello nipples, good bye expanders
9/14/12 Rejected implant/infection. Implant removed
5/6/13 Latissumis Dorsi surgery left side with expander

PS - my photo was taken 5 days after my double mastectomy surgery and 6 weeks after my TCH was completed
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Old 07-14-2011, 11:07 AM   #11
Ellie F
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Re: Cancelled reconstruction

Totally agree. Feels like he's not the right man for you. I suspect there are lots of surgeons in the States that really specialise in DIEP reconstruction and maybe this is a sign to find one.
I have recently been told that the waiting list here in England is 15 months for the op with a good surgeon!! No wonder ppl pay privately.

Good luck
Ellie
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Old 07-14-2011, 01:10 PM   #12
Margaret Eleanor
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Re: Cancelled reconstruction

I agree with the others about him not being the right PS for you. Your signature says you're in Mississippi. How close are you to NOLA? I've heard wonderful things about them and they were next on my list to contact had UCLA not worked out. So far everyone at UCLA has been wonderful. They have understood I have a life, a job, a preteen, etc. and we have worked our schedules together to come up with a date of the 26th. My PS also has a life, kids, vacation, etc. I was delighted to find out he's human.
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Old 07-14-2011, 01:26 PM   #13
fauxgypsy
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Re: Cancelled reconstruction

I have been reading about the surgeons in NOLA. I am considering lining it up for next summer. It is not the wait that bothered me but the uncertainty. I had to go in an teach for someone last summer that had to have an emergency gallbladder surgery. It is really upsetting to the students to have to change instructors midsemester. If they don't do well in their classes it can affect their lives drastically. Many of them hope to go into nursing and I teach pre-nursing classes, Anatomy and Physiology I and II and Nutrition. It wouldn't just affect my life, it would impact theirs. Thank you for all of your comments. As for the guilt they tried to lay on me. I have "sucked it up" quite a bit ; ). Still don't know if I was stage four or not so every day is a blessing.
__________________
In the world of destiny, there are no statistics.
Jan. 26- mammogram and ultrasound- suspicious lump
Mid-February- lumpectomy, infiltrating ductal carcinoma ~4.5 cm and a 1 cm DCIS, did not get clear margins, did not check lymph nodes
ER+/PR+, her2 +++, nuclear grade 3 of 3
February 20-PET scan showed something on liver. No biopsy.
March- Started carboplatin, herceptin, taxol on a four week cycle
May 3- Pet scan, with intent to do a biopsy, found nothing, liver or breast- no biopsy because there is nothing to biopsy
June 21- new onc, very concerned that there had been no biopsy,
June 18th-CAT scan, bone scan-negative
August 7th - Brain MRI-negative
August 9th- mastectomy, all pathology negative
January 2008 still NED! New oncologist -herceptin for full year after chemo- until July, and tamoxifen---negative scans since May '07
July 2008-Finished Herceptin!
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Old 07-14-2011, 01:34 PM   #14
tricia keegan
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Re: Cancelled reconstruction

I'm sorry and I too would want to know a definate date if I was facing this, is there another surgon you can see?? This one sounds like he does'nt really have his patients best interests at heart!!!
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Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 07-14-2011, 02:16 PM   #15
StephN
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Re: Cancelled reconstruction

Sometimes these specialty surgeons who don't have much competition think that everyone ELSE has to fit into their schedules and whims. You are not the first one here to make such complaints. Though this seems to be a VERY bad case of stringing you along with partial information.

Hope you will have better luck where there is a bigger pond with more fish.
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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 07-14-2011, 02:27 PM   #16
fauxgypsy
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Re: Cancelled reconstruction

When I told the nurse that I would get some one else she told me that he was the only in Memphis that does it. I told her there were surgeons elsewhere. Why doesn't he specialize? You can't be all things to all people. I don't want a surgeon who is that spread out. I would have preferred to find it out earlier.
__________________
In the world of destiny, there are no statistics.
Jan. 26- mammogram and ultrasound- suspicious lump
Mid-February- lumpectomy, infiltrating ductal carcinoma ~4.5 cm and a 1 cm DCIS, did not get clear margins, did not check lymph nodes
ER+/PR+, her2 +++, nuclear grade 3 of 3
February 20-PET scan showed something on liver. No biopsy.
March- Started carboplatin, herceptin, taxol on a four week cycle
May 3- Pet scan, with intent to do a biopsy, found nothing, liver or breast- no biopsy because there is nothing to biopsy
June 21- new onc, very concerned that there had been no biopsy,
June 18th-CAT scan, bone scan-negative
August 7th - Brain MRI-negative
August 9th- mastectomy, all pathology negative
January 2008 still NED! New oncologist -herceptin for full year after chemo- until July, and tamoxifen---negative scans since May '07
July 2008-Finished Herceptin!
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Old 07-14-2011, 05:36 PM   #17
Lauriesh
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Re: Cancelled reconstruction

I went to NOLA (from Minnesota) to have my DIEP in 2006. I was very happy with the drs and with the procedure.

They only do breast reconstruction. I had a plastic surgeon in MN who does breast reconstruction (but not diep) who saw my reconstruction and was amazed at how good it was. She was so impressed with it that she told me that she was going to start referring her patients who wanted a DIEP to them.

Laurie
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Old 07-14-2011, 05:50 PM   #18
fauxgypsy
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Re: Cancelled reconstruction

Laurie,
What is the name of the clinic? I have been wondering how that works. How long did you have to stay in New Orleans? How many times did you have to go back for check ups? That sort of thing. I was also wondering about the recovery. I have been told six weeks but how debilitating is it?

leslie
__________________
In the world of destiny, there are no statistics.
Jan. 26- mammogram and ultrasound- suspicious lump
Mid-February- lumpectomy, infiltrating ductal carcinoma ~4.5 cm and a 1 cm DCIS, did not get clear margins, did not check lymph nodes
ER+/PR+, her2 +++, nuclear grade 3 of 3
February 20-PET scan showed something on liver. No biopsy.
March- Started carboplatin, herceptin, taxol on a four week cycle
May 3- Pet scan, with intent to do a biopsy, found nothing, liver or breast- no biopsy because there is nothing to biopsy
June 21- new onc, very concerned that there had been no biopsy,
June 18th-CAT scan, bone scan-negative
August 7th - Brain MRI-negative
August 9th- mastectomy, all pathology negative
January 2008 still NED! New oncologist -herceptin for full year after chemo- until July, and tamoxifen---negative scans since May '07
July 2008-Finished Herceptin!
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Old 07-15-2011, 03:47 AM   #19
Lauriesh
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Re: Cancelled reconstruction

hi Leslie, It is the center for breast reconstruction, with dr. Dellacroix and Dr. Sullivan.

I have only been there once. I met with dr D, had pre op work done, then had surgery the next morning. I was in the hospital for a few days, then returned to a hotel, with my husband.

After a few days, I went in for a post op visit, had one drain removed (had to keep one drain in for several weeks) and flew home the next day. I think I was there a total of 9 or 10 days. Sorry, it was 5 years ago, and the details are becoming fuzzy.

It is a long recovery. I was 38, in excellent health, and had no complications, and it took at least 6 weeks. The pain wasn't bad. I had 3 c-sections, and the pain from those was worse than this. The worst thing I remember was that I had to sleep on my back, propped up. Looking back, I think if I would have had a recliner, that would have helped.

There is also a stage 2, where they will add nipples and do lipo, if needed. I never felt the need to go back. My 3 kids were 3, 7 and 8 when I had the surgery, and I just didn't want to leave them again.

I am very happy with the results, and would do it again, in a second. I just couldn't imagine wearing a prosthesis for the rest of my life.

On breastcancer.org there is a forum for reconstruction, and you will find tons of info on NOLA (that is where I first heard about them)

Laurie
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Old 07-15-2011, 08:17 AM   #20
Soccermom
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Re: Cancelled reconstruction

Leslie,
I had delayed (3years)stacked DIEP reconstruction w the NOLA docs in 2007... I think the silver lining for you may be that you will be able to see Drs. Whose ONLY interest is Breast Reconstruction. They built a magnificent facility in NOLA for us!
Let me know if you'd like to chat about it?!
Marcia
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