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Old 12-11-2013, 02:09 PM   #1
alicem
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Red face 5 Year Breast Cancerversary with a side of Non-Hodgkin's Lymphoma

I have been looking forward to this day for, well..., 5 years so it is with mixed emotions that I write this.

Two weeks before Christmas in 2008 I was in Houston undergoing a combined mastectomy/reconstruction surgery that was to be the end of my treatment (my diagnosis had been DCIS, Stage 0). The day after Christmas, my breast surgeon called to give me the pathology report. There was a surprise 2 cm invasive tumor that was found and it was HER2+. He had the results a week earlier but gave me the Christmas gift of time by waiting a few more days.

Being diagnosed with HER2 gave me another gift of sorts - all of the wonderful people I have met through this forum. YOU ARE THE BEST! In fact, if there were an Academy Award given to the best support forum, this one would win hands down. I am so grateful for you and that is why I decided to share my third cancer diagnosis. (I had a basal cell carcinoma removed from my face a few years before my breast cancer.)

GOOD NEWS - BAD NEWS:

Now to the not-so-good news. I was diagnosed last week with Mycosis Fungoides (MF), a Cutaneous t-Cell Lymphoma (CTCL). The good news is it was found very, very early and as of now I am Stage 1A. The bad news is, it is systemic, with no known cure and left untreated will progress. Good news - Stage 1A, IF it does not progress means my life expectancy is the same as someone who does not have MF.

I believe my breast cancer might have saved my life. In April, I had a rash about an inch in diameter on my reconstructed breast that suddenly appeared out of nowhere and after a month had not gone away. I immediately became worried that it was inflammatory breast cancer. After meeting with my oncologist, he recommended a skin biopsy from my dermatologist. Good news - it wasn't IBC, but they couldn't confirm what it was. They were suspicious of MF, but couldn't be sure. The steroid cream I applied caused the rash to disappear. BUT, it came back this summer. I applied the cream and it went away again. I stopped using it around Labor Day, and a third time it came back. I went back to the dermatologist the tuesday before Thanksgiving for another biopsy. This time, it was confirmed as Mycosis Fungoides.

My oncologist ordered a chest x-ray and bloodwork done to look for Sezary cells - which if found mean a more leukemia type of MF and more serious. He doesn't think he will find them, and did this more to rule that out right now. The chest x-ray came back normal.

Everything I read about MF talks about how difficult it is to diagnosis. Sometimes it takes 6 years because it is thought to be a dermatitis. If it would have been on any other part of my body but my breast I wouldn't have thought twice about it. That is why it is often found at a more advanced stage.

For those who would like to know more, here is just one link (believe me, I have been reading them all!) I advise you not to look at images of the advanced stages because it is not a pretty picture. This link is image free: http://www.clfoundation.org/online-l...s-fungoides-mf

One other bit of good news, it can be extremely itchy but since it's on the reconstructed breast I have NO FEELING there!

I am still working out treatment with my dermatologist and oncologist. I will keep you posted. It's made me a bit depressed that I will have to deal with this the rest of my life, but I HAVE my life, and so much more to be grateful. Coming here today and learning that we have lost both Elaine M and Hema gives me a slap in the face to get out of this pity party and back to living.

I wish all of you a Merry Christmas, Happy Kwanzaa, Belated Happy Hannukah, and Happy Holidays. May you all be safe and surrounded by those you love.

~Love, Alice
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9/15/08 (age 52) - Mammo: calcifications
9/22/08 - Biopsy: DCIS, grade 3. ER,PR status: Pos. in 75-90% of tumor cells.
10/01/08 - Ob/Gyn appt.: found complex, mostly cystic mass on right ovary - 11cmx12cmx 8cm
10/15/08 - Hysterectomy & Oophorectomy, Lumpectomy: Cyst on uterus, not ovary - all was benign. Breast - 5 of 6 bad margins. 2 Sentinel Lymph nodes removed, both negative. Stage 0, Tis, N0
12/11/08 - Mastectomy & DIEP reconstruction: Surprise! 2 cm Invasive DC, grade 2 found. One benign internal mammary lymph node. Stage 1, T1c, N0, all clean margins. ER+ (Proportion Score = 2/5, Intensity Score = 2/3) and PR+(Proportion Score = 3/5, Intensity Score = 2/3)
HER2 score = 3+
1/09/09 - Oncotype DX: Recurrence S/core of 60 !?!?! ER status is NEG!! PR staus is NEG! HER2 score = 12.2 (still positive, greater than 11.5 is positive).
1/20/09 - Started chemo: TCH
5/26/09 - FINISHED CHEMO!
1/05/10 - FINISHED HERCEPTIN!
1/22/10 - Port-a-catheter removed!
3/07/18 - Still NED
9/10/23 - Still NED
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Old 12-11-2013, 02:59 PM   #2
caya
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Re: 5 Year Breast Cancerversary with a side of Non-Hodgkin's Lymphoma

Wow Alice - what a story to tell! it's a double edged sword, that's for sure - of course I pray that you will live a very long life, albeit living with MF. But as you say, the key word here is "living".

Happy Holidays to you and your family.

all the best
caya
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ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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Old 12-11-2013, 03:25 PM   #3
tricia keegan
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Re: 5 Year Breast Cancerversary with a side of Non-Hodgkin's Lymphoma

Wow a bittersweet day for you Alice but its wonderful you've reached the five year milestone from BC and I know that will have made you strong enough to face this new issue which thankfully has been found so early, still much to celebrate! xx

P.S My friend had NHL and is doing great eight years on too.
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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 12-11-2013, 04:16 PM   #4
Mary Anne in TX
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Re: 5 Year Breast Cancerversary with a side of Non-Hodgkin's Lymphoma

Wow, Alice, what a deal! I do so agree with you that this group is the bread and butter of support. I can't imagine trying to do this life without "the gang"! Wish you didn't have to deal with this new thing, but so glad that you can do it. Merry Christmas to you and have a very blessed holiday season. Living fully each day really is the job, isn't it?
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MA in TX.
Grateful for each and every day....

Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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Old 12-11-2013, 06:28 PM   #5
roz123
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Re: 5 Year Breast Cancerversary with a side of Non-Hodgkin's Lymphoma

wow - that is a lot to digest
im sorry you are dealing with this now...
I am wondering if it has any relation to previous BC treatment?
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diagnosed aug/11
right breast IDC 2.2 cm LVI
neoadjuvant fecx3, tax and her x3
surgery -pCR 0/2 nodes
25 rads
herceptin x18
tamox
prophy bi-msx with TE's oct 15/12
LD flap reconstruction (PM me if you want the details)
zoladex shots monthly until SOFT studies come out
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Old 12-11-2013, 07:21 PM   #6
suzan w
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Re: 5 Year Breast Cancerversary with a side of Non-Hodgkin's Lymphoma

Well!!! Congratulations and comisserations (?) are in order!! Life (operative word here) sure is full of surprises!!
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Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year

as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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Old 12-11-2013, 07:22 PM   #7
Ceesun
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Re: 5 Year Breast Cancerversary with a side of Non-Hodgkin's Lymphoma

Alice, You can do whatever is required and beat this, I can just sense it from your post. I am sorry to read what you are going through, but you will conquer it. Stay tough. Hugs, Ceesun
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Old 12-13-2013, 04:28 PM   #8
Cannon
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Re: 5 Year Breast Cancerversary with a side of Non-Hodgkin's Lymphoma

That is one of the craziest things I have heard - you ARE lucky they diagnosed it. You are dealing very well - so congratulations on your cancerversary, and all the best with this next challenge. Do keep us posted.
Best,
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Dx 8/06 Age 43 Stage IIIA multifocal throughout breast, largest tumor 5 cm, grade 3, comedo, ER+PR+HER+++
Neoadjuvant A/C 4X Dose Dense
11/06 Bilateral Mastectomy (no choice on the right, my choice on the left)
Taxol+Herceptin weekly x12, continuing with Herceptin, finished one year in 12/07
33 Rads
Femara for 5+ years, staying on (started with Arimidex, switched after about a month, much happier)
Abnormal brain MRI shows no cancer, but "extensive white matter diease" - unknown cause
BRCA negative - lots of cancer in my family
survivor of thyroid cancer
also have Crohn's disease
CT and bone scan say NED as of 5/13
dx with severe cardiomyopathy 5/12 (likely due to chemo and Herceptin), ejection fraction in low 20's, now up to 40, went to 50, latest read 12/13 is back down to 35
1/13 Acute pancreatitis - are you kidding me?
9/13 started Humira for Crohn's. starting to have some energy again
B12 and Vit D both needed supplementation
Cataracts in both eyes noted 6/12 - surgery in the next 2-4 years?
4/14 Kidney stones/blockage/infection - related to Crohn's Disease
5/14 My aunt passed away - she was diagnosed after I was with Stage I - not Her2+, then Stage 4 for about one year
6/14 Scans - still NED, thank God. However, broken rib (I didn't notice) lots of bone degeneration osteopenia/osteoporosis. I also still have cardiomyopathy secondary to chemo.
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Old 12-13-2013, 05:24 PM   #9
Mel3
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Re: 5 Year Breast Cancerversary with a side of Non-Hodgkin's Lymphoma

Alice, you have been on my mind lately, perhaps this is why. I'm sorry you're experiencing all of this. My mother in law has something similar so I'm going to share your info with her. Please keep us informed and stay strong.

I enjoyed our time together last year in San Antonio. I loved how much we laughed on the boat ride! Hopefully we will meet again for the conference.

Merry Christmas! I'll be praying for you.
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Dx June 2010
ER- PR+ Her2+++, Stage 3C
A/C x 4
Mastectomy 8/18 nodes+
Taxol/Herceptin x 4
35 rads
Continue Herceptin for 1 year
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Old 12-16-2013, 06:41 PM   #10
sassy
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Re: 5 Year Breast Cancerversary with a side of Non-Hodgkin's Lymphoma

Well shoot, Alice.

I hate that you are having to "deal" with another health issue--but "DEAL" I know you will.

I join Melissa on good memories of SA. Please know I am keeping you in my thoughts and prayers.

Vibes of healing and strength to you.

Much love,
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Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14YEARS NED!
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Old 12-16-2013, 07:36 PM   #11
Laurel
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Re: 5 Year Breast Cancerversary with a side of Non-Hodgkin's Lymphoma

Alice,

I am sorry you have yet another danged cancer-twist to deal with! I have to tip my hat at your positive spin on the whole matter, but I can appreciate how scary your newest diagnosis must have been for you. I hope and pray you are one those who pop into remission and have no further skin lesions! I think Brenda would have declared this a "crap on a crapstick" moment! Texans are tough so I am betting you will manage your MF well.

Surely wishing you the best.
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Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

15 Years NED
I think I just might hang around awhile....

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Old 12-16-2013, 08:22 PM   #12
StephN
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Re: 5 Year Breast Cancerversary with a side of Non-Hodgkin's Lymphoma

Five years can bring us all kinds of news! Congratulations on NED. Any cancer wanting to come back would have to move fast to catch you on your bike rides.

Oh, my! I am gobsmacked!

You explained the new problem so well that I think I understand what you are going through and facing.

Just hope there are no sleazy Sezary cells to be found. Your body has already added insult to injury and it can just stop there!

Yes, most of us would not pay much attention to a very small area of rash unless it itched like crazy or something.

Now that you have digested all the new info, I feel you will carry on with your holiday plans and have a very merry one.
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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.

Last edited by StephN; 01-02-2014 at 12:58 PM..
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Old 01-02-2014, 07:17 AM   #13
Jackie07
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Re: 5 Year Breast Cancerversary with a side of Non-Hodgkin's Lymphoma

Happy New Year! Alice.

Congratulations on the five year mark and NED. Glad you've caught the CTCL early. And thanks for sharing with us the details so everyone can be on the look-out.

There is a Lynch Syndrome that explains/cautions the rise of several cancers (in the family) due to some glitches in the genes. I found the term after my 2nd Brother was diagnosed with colon cancer. I put in 'Non-Hodgkin's Lymphoma' (Mother), breast cancer, brain cancer, colon cancer" in the Yahoo search box just 'for fun' and then (after gleaning several pages of results) was surprised to see that there's a name for it (actually, two names - it was called 'HNPCC - Hereditary Non-polyposes colon cancer' for several years, used interchangeably at one time, and just recently changed back to 'Lynch' again.)

Love your "I HAVE my life, and so much more to be grateful... back to living."

May you be safe and surrounded by those you love.
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http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
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Irrtbl bowel 1'09
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Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
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1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

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Last edited by Jackie07; 01-02-2014 at 07:20 AM..
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Old 01-05-2014, 12:25 PM   #14
Ellie F
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Re: 5 Year Breast Cancerversary with a side of Non-Hodgkin's Lymphoma

Hi Alice
Congratulations on 5 years NED. Am sorry to hear you're facing another issue but am sure you'll deal with it as before with bc.
May I ask if there is any connection between this new disease and chemotherapy?

Ellie
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