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08-08-2011, 09:25 PM
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#1
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Senior Member
Join Date: Jul 2009
Location: New York
Posts: 106
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Anyone know about bullous pemphigoid?
Has anyone had experience with bullous pemphigoid? I was recently diagnosed by a dermatologist who biopsied the skin under a large blister on my leg. Now there is a new blister in my mouth. It is an auto immune disease, probably resulting from radiation tx., but not life threatening. Just tired of feeling like a compendium of unusual diseases! Any ideas on what to do to counteract this?
__________________
Mammo 6/2/09
left breast biopsy 6/12/09
Bad news 6/18/09!
7/17/09 lumpectomy
Stage 1- 0.5 cm IDC , DCIS 25%
HER2 +++, ER+95%, PR+10%
8/09 Muga Scan 65
8/19/09 beg. TCH 1Xwk. 12 wks.
last chemo 11/26/09
IMRT - 33 txs. 1/12/10 to 3/11/10
Herceptin 1X week for 1 yr. Ends 8/10
Femara 3X wk. started 1/13/10-too much pain in middle finger; switched to Arimidex 4/28/10 -permanently swollen, but no pain. Will continue for 5 yrs.
10/2/11 CT/PET scan due to elevated CA27.29 of 40.5.
Hot spot in irradiated area. Score goes down again to normal range. Subsequent blood tests go up and down until 2 tests in row at elevated levels of 42.5 & 45.7.
7/9/11 Intermittent vertigo. As a precaution contrast MRI to head. NED.
8/15/11 Erratic CA27.29 may be result of new auto immune disease, bullous pemphigoid (skin problem)
Off Arimidex for 6 wks. to see if trigger finger improves
Switched to Aromasin, 3X wk., but affected my liver.
On 2/23/12 taken off AI's.
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08-09-2011, 04:12 PM
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#2
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: Anyone know about bullous pemphigoid?
Myra I had to look this up http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001886/
I had'nt heard of it before but really hope it clears it up soon!
__________________
Tricia
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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08-09-2011, 09:17 PM
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#3
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Senior Member
Join Date: Jul 2009
Location: New York
Posts: 106
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Re: Anyone know about bullous pemphigoid?
Thanks Tricia, how kind of you to research this! I am thinking more and more that I need a holistic doctor who looks at the whole person, focusing on health & supporting the immune system, as part of the medical team. Seems lately that I am chasing one symptom after another. I am hoping there's a better way.
__________________
Mammo 6/2/09
left breast biopsy 6/12/09
Bad news 6/18/09!
7/17/09 lumpectomy
Stage 1- 0.5 cm IDC , DCIS 25%
HER2 +++, ER+95%, PR+10%
8/09 Muga Scan 65
8/19/09 beg. TCH 1Xwk. 12 wks.
last chemo 11/26/09
IMRT - 33 txs. 1/12/10 to 3/11/10
Herceptin 1X week for 1 yr. Ends 8/10
Femara 3X wk. started 1/13/10-too much pain in middle finger; switched to Arimidex 4/28/10 -permanently swollen, but no pain. Will continue for 5 yrs.
10/2/11 CT/PET scan due to elevated CA27.29 of 40.5.
Hot spot in irradiated area. Score goes down again to normal range. Subsequent blood tests go up and down until 2 tests in row at elevated levels of 42.5 & 45.7.
7/9/11 Intermittent vertigo. As a precaution contrast MRI to head. NED.
8/15/11 Erratic CA27.29 may be result of new auto immune disease, bullous pemphigoid (skin problem)
Off Arimidex for 6 wks. to see if trigger finger improves
Switched to Aromasin, 3X wk., but affected my liver.
On 2/23/12 taken off AI's.
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09-28-2011, 01:46 PM
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#4
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Senior Member
Join Date: Jul 2009
Location: New York
Posts: 106
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Re: Anyone know about bullous pemphigoid?
Thanks for sharing this. Hard to know what causes what. I even had cancer markers in blood tests that were off, maybe due to this condition. But, I am lucky now to feel fine without new eruptions.
I must say it always goes better for me to have the support of this group. So, thanks again.
__________________
Mammo 6/2/09
left breast biopsy 6/12/09
Bad news 6/18/09!
7/17/09 lumpectomy
Stage 1- 0.5 cm IDC , DCIS 25%
HER2 +++, ER+95%, PR+10%
8/09 Muga Scan 65
8/19/09 beg. TCH 1Xwk. 12 wks.
last chemo 11/26/09
IMRT - 33 txs. 1/12/10 to 3/11/10
Herceptin 1X week for 1 yr. Ends 8/10
Femara 3X wk. started 1/13/10-too much pain in middle finger; switched to Arimidex 4/28/10 -permanently swollen, but no pain. Will continue for 5 yrs.
10/2/11 CT/PET scan due to elevated CA27.29 of 40.5.
Hot spot in irradiated area. Score goes down again to normal range. Subsequent blood tests go up and down until 2 tests in row at elevated levels of 42.5 & 45.7.
7/9/11 Intermittent vertigo. As a precaution contrast MRI to head. NED.
8/15/11 Erratic CA27.29 may be result of new auto immune disease, bullous pemphigoid (skin problem)
Off Arimidex for 6 wks. to see if trigger finger improves
Switched to Aromasin, 3X wk., but affected my liver.
On 2/23/12 taken off AI's.
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09-28-2011, 02:13 PM
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#5
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Senior Member
Join Date: May 2010
Location: Elizabethton, TN
Posts: 418
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Re: Anyone know about bullous pemphigoid?
Myra - my cousin has this autoimmune disease. She was diagnosed several years ago and has been treated with steroids (prednisone) for flares and eruptions. She has long periods where there is no activity and then may have months of problems with it. Stress is one of the main triggers, as is true with many autoimmune diseases, but she also seems to have flares with no real reason. We have lots of immune problems in our family (lupus, gluten allergies, rheumatoid arthritis, etc). Sadly, it's one of those things you have to deal with over the long haul with no real "cure". Hope you feel better soon and get this under control.
__________________
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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09-29-2011, 08:31 PM
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#6
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Senior Member
Join Date: Jul 2009
Location: New York
Posts: 106
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Re: Anyone know about bullous pemphigoid?
Thanks, Joni, interesting to hear from someone who knows something about it. I'm doing fine now, but always nervous when I get any itchy spot. Just a little more anxiety to live with!
__________________
Mammo 6/2/09
left breast biopsy 6/12/09
Bad news 6/18/09!
7/17/09 lumpectomy
Stage 1- 0.5 cm IDC , DCIS 25%
HER2 +++, ER+95%, PR+10%
8/09 Muga Scan 65
8/19/09 beg. TCH 1Xwk. 12 wks.
last chemo 11/26/09
IMRT - 33 txs. 1/12/10 to 3/11/10
Herceptin 1X week for 1 yr. Ends 8/10
Femara 3X wk. started 1/13/10-too much pain in middle finger; switched to Arimidex 4/28/10 -permanently swollen, but no pain. Will continue for 5 yrs.
10/2/11 CT/PET scan due to elevated CA27.29 of 40.5.
Hot spot in irradiated area. Score goes down again to normal range. Subsequent blood tests go up and down until 2 tests in row at elevated levels of 42.5 & 45.7.
7/9/11 Intermittent vertigo. As a precaution contrast MRI to head. NED.
8/15/11 Erratic CA27.29 may be result of new auto immune disease, bullous pemphigoid (skin problem)
Off Arimidex for 6 wks. to see if trigger finger improves
Switched to Aromasin, 3X wk., but affected my liver.
On 2/23/12 taken off AI's.
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