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Old 05-03-2013, 11:27 AM   #1
linn65
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Venting and hopefully someone understands or feels my pain.

I am taking venlafaxine (Effexor), but I am on a dosage of 37.5 MG a day, and I wonder if my dosage should be upped???

My Hot flashes have been much better until after I have the herceptin treatment then I have 10 a day I think but without the Venlafaxine maybe it might be even worse I don't know. In addition, my moods are all over the place, so I am hoping I get more bang for my buck with the Venlafaxine....Meaning mood stabilizer and hot flash stablizer.

After going through TCH, Radiation, and needless doctor's appt it seems now to just say; What are you doing for fun?? It Is such a waste of my time going to see the ONC and Breast Surgeon every 3 months for a meet and greet now makes me angry!! I want to have a positive attitude and my self talk tells me look you have made it through all the rough stuff so now be thankful that you have to only go every 3 weeks until December for Herceptin.

I tell myself all of this but it does not make me feel better!!

My hair is maybe a 1/2 inch long again I should be thankful. I make myself go and do things and am working on fake it until you make it kind of thing.....Like if you go and do then somehow pie in the sky will happen and a positive, thankful, and appreciation for making it this far will kick in, but I am still not feeling it.

I want to feel positive, thankful, appreciative, and appreciate all the small things in life that I did not before.

I am starting to think like the movie, "One Bird Flew Over the Coo Coo's Nest". Maybe, I just need a labotomy on my brain.....

And OMG if I take my wig off and get told; You really have a nice shaped head, and I would not tell you that if it wasn't the truth....I HATE HAVING HAIR THAT LOOKS LIKE I SHOULD BE IN THE MILITARY I miss my long hair and yes I know my hair will grow back, and I haven't even started talking about only having 1 breast!!! I know people do not know what to say, people are trying to be kind, people are trying to be encouraging. I get it!!

I just feel angry, sad, frustrated and YES I KNOW I NEED TO HAVE A POSITIVE ATTITUDE! I don't want to 1/2 inch hair, 1 breast, depression, alone and gawd knows I do not want to cry once a week....I envy others going through this that seem to be positive and do all the things I should be doing or need to do!! Then of course I spiral out of control at times thinking geez I cannot even do this cancer right.....What really is funny is when people tell me I am an inspiration, I have such a good attitude, and am doing so well. When in my mind I am thinking if you could read my thoughts right now uhm I am not this person you are speaking of, and I feel like a little bit of fake!!

An analogy or like a movie; Sometimes I feel like I am standing in this world at a stand still, looking around, and I am not moving just standing and looking around at people and life and not living mine, and I don't know how to live it or what to do to change it. If you talk about it to anyone everyone has the answers on what you should do and know exactly how to fix it, and I think again all well meaning, but they are not living this life. It is soooo much easier than done!!! I can't even take a vacation or should I say use my vacation time to do something fun because my time I have goes to doctors appts, tests and treatments (again, I know I should be thankful I have a job, insurance and vacation time I can use for going to all these things and there are children in Africa starving). Then I think to myself man I wish I could be living a life, have a family, and not feel so incredibly alone in all of this cancer garbage. I never appreciated what I had in life until cancer turned it upside down....The Cliche' Hine sight is 20/20 is soooo true!!!

Knowing I need to get out of this funk, knowing I need to be positive, knowing I need to enjoy each day I KNOW.....My intelllect KNOWS, but my spirit and emotions do not follow along with what I KNOW!!

There is my major complaining, venting and all the things I am not doing right!!! I had to write it all down so thanks for reading or listening everyone.
__________________
myleftlump.wordpress.com - started blogging my
IDC breast cancer
7/2012 diagnosed with multiple solid lesions
7/20/12 biopsy done. ER+ 30 PR -, HER+++,k167 80% Grade 2
9/2012 biopsy on lymph node - showed malignant

9/2012 Pre-adjunctive TCH chemo.

12/6/12 MRI after Pre-adj.
Results: Modest Decrease in size of left breast malignancy As well as the associated satellite lesions and auxiliary Adenopathy compared to prior study. Doctors hoped for better but good response it didn't grow.

12/18/2012 left masectomy with axillary nodes
Size 3.2 CM, Nottingham score 9/9
Grade 3, no evidence of in situ carcinoma
Areas of angiolymphatic are identified
Carcinoma is 0.5 cm from inked deep
Margin of excision
Attached axillary lymph nodes: metastatic
Carcinoma in 6 of 8 nodes.
Size of largest node 1.5 cm
Extracapsular
ER + 73%, PR+2%, HER2+

2/27/13 6 weeks of IMRT radiation finished

2/2013 Started on Tamoxifan 5 years.

8/2013 will take last Herceptin, 17 treatments total every 3 weeks.

BRCA1 & BRAC2 - Negative

August 28, 2013 DIEP flap on the left breast.
February 2014 Nip & Tuck
March 14, 2014 nipple reconstruction and removed port.
August 14, 2014 lump in lymph nodes under arm and above clavicle. Stage IV
August 28, 2014 herceptin And projeta starting and port put back in.

3/18/15 stopped arimidex.
3/18/15 progression....Tdm1
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Old 05-03-2013, 12:00 PM   #2
IrvineFriend
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Re: Venting and hopefully someone understands or feels my pain.

I feel your pain. I know for my onc. nurse who went through cancer as well, her 1 inch hair was equivalent to being bald. She still wore a hat everyday. I would not have known she had hair had I not asked about it.

Stress is a major trigger in hot flashes and I know you hate your treatments and seeing your doctors, so I'm sure that alone is making them worse. My hot flashes about killed me, and still make me vomit (just did an hour ago) but they are reducing as the chemo is clearing my system.

I will email you the guided meditations to do. Sorry I haven't done that yet! I am going to be better about doing them myself. That 10-15 minutes of being in the present and clearing the mind was always very helpful for me.

That said, a little retail therapy can help. I allow myself a "present" when I finish a treatment. Anything to feel better, like a new blouse or dress, etc. Summer is coming and there are lots of great colors out now! If you're feeling well, a nice dinner out with a friend or a movie night. I think this is the time to be good to yourself and find those little things that bring some joy.

BTW, my effexor is 75mg. From what I've googled, seems to be the most effective dose for hot flashes.
__________________
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 05-03-2013, 12:12 PM   #3
jra40
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Re: Venting and hopefully someone understands or feels my pain.

Boy, you said everything that I felt and still feel at times. I really think there needs to be rehabilitation for breast cancer after treament. The mental aftermath can be so brutal and people who have not been through it just do not understand, even our doctors. They just expect us to go back to a normal life - what is that and how do you achieve that after a cancer diagnosis??!!

I am now over a year out from my last herceptin treatment, my hair has grown back, but I am still dealing with the mental aftermath. I still have phantom pains that make me paranoid that my cancer is back, and the hot flashes really wreak havoc on me too. My oncologst just prescribed me Effexor but I am too scared to take it. I am learning to live with the aftermath of it all and it's hard to keep positive. Some days are better and then there are the days were I am mad at the world. I think we are entitled to that with all we've been through!

I remember someone telling me I had a cute head with my wig off - really does not help at all!

Hang in there - it will get better
__________________
11/17/10 - Diagnosed with 4.5cm tumor in right breast, IDC, Stage 2, Nuclear grade 2, ER+ PR+ HER2+
12/13/10 - Lymph node biopsy - negative
12/28/10 - Started neo-adjuvant treatment along with clinical trial with 4 rounds of AC chemo every 3 weeks
3/15/11 - Began weekly Taxol/Herceptin infusions along with 750mg of Tykerb taken by mouth daily
6/28/11 - Finished last cycle of Taxol
7/27/11 - Breast MRI shows tumor has dissolved, remarkable reaction to chemo
8/31/11 - Lumpectomy, Sentinel Node biopsy. Node negative, clear margins, 7mm of cancer left over from chemo.
10/05/11 - Started radiation, 5 days a week for 7 weeks.
11/8/11 - Finished radiation
3/21/12 - Last Herceptin!
3/26/12 - Port removed!
Tamoxifen for 5 years
8/4/15 - Hysterectomy & bilateral salpingo-oophorectomy. Due to large fibroids. No cancer!
8/8/15 - Started Arimidex
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Old 05-03-2013, 02:25 PM   #4
Cat
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Re: Venting and hopefully someone understands or feels my pain.

It sounds like I am older than you and was almost due for menopause so tho I had hot flashes they weren't as bad. I do understand the other feelings and you are very normal. I have often thought to myself I should take up acting, I'm getting pretty good at it now. And I too have a "great shaped head"! Or so I've been told. I also get "you have pretty eyes". I think because they are the only thing that haven't been affected. All that I can say is I too meditate and try not to feel guilty about me time. I also tend to connect with my feel good people and avoid the people that tend to make ne feel drained or bad. The time on herceptin went fast for me and then I felt lost without the regular visits for awhile and it seemed a little scary to let go. Everything you feel is normal whether anyone else is feeling it or not. Allow the tears, allow the anger and try to continue to count your blessings. So many have gone through this and come out the other side. Don't be afraid to ask about the effexor dose either. Do what feels right for you and stay connected here and/or with friends and family. Sending you hugs, Cathy
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3/06 DX stage III er-pr-her2+++ breast, 1+node
age 49 and 364 days
3XAC 4X taxol and herceptin continue herceptin one year
bilat mastectomy w/TRAM
32 rads
9/08 recurrance 4 sternal nodes
mediastinoscopy, able to remove 3
taxotere, carboplatin, herceptin, x6
continue herceptin indefinately
5/10 recurrance in same node/area
mediastinoscopy, removed nodes
added tykerb
27 rads
10/18/10 PET shows inflammation no active disease
8/2011 recurrence one right mediastinal node, xeloda and proton radiation to node.
D/C xeloda due to toxicity
12/5 PET scan clear
2/2012 colon blockage, breast cancer
(never thought it could go there! thought I was constipated)
start abraxane, herceptin, continue tykerb
10/2012 Kidney ablation (renal CA!)
3/2013 CT and biopsy R kidney (BC met to R kidney)
4/4/2013 Begin Kadcyla
7/30/13 Craniotomy cerebellar mets, 1.7cm 3cm
Sept 4-6 post op cyberknife
Sept 23 ablation right kidney (blow up pesky breast ca met)
Oct headaches MRI Oct 10 (only surgical changes ! Yay!)
Short of breath. CT, pulmonary function, echo
New crap in right lung heart good. Pooh!
12/13 DC kadcyla. Begin halaven
2/14 MRI brain NED Yay!
4/3/14 CT mostly stable but breast mets r kidney growing
4/16/14 ablation right kidney again
Continue halaven, tykerb
dc halaven gemzar?
2nd opinion May 14
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Old 05-03-2013, 03:18 PM   #5
Lien
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Re: Venting and hopefully someone understands or feels my pain.

Hi Linn,

Whoever said you need to be Superwoman? Why on Earth should you be positive about anything? Cancer sucks! It scares the heck out of us, turns our lives upside down, makes us feel awful because of treatment side effects and did I say it sucks?

We are constantly fed fairytales by the media about a pink, glossy, frilly, positive sisterhood. Perhaps some of us feel that way, but I didn't. Especially after finishing treatment, I felt like the bottom fell out of my life. It took time, and friends, to get me back on track. Being able to vent here and on the Breastcancer Listserv helped a lot.

I am 9 years out from diagnosis and have managed to find that positive attitude somewhere along the way. It gets better. Believe me, this too shall pass. It is part of the whole cancer experience.

Please talk to your doc about adjusting your medicine if you feel that would help. Talk to people who "get it", join a live support group if that works for you. But never ever blame yourself for feeling the way you do. You did not ask for this cancer experience. It hit you out of the blue. You found yourself on a rollercoaster ride and you have to run the course. How could anyone expect you to feel good about that?

But like I said, it does get better. Just hang in there and get all the help you can get. You deserve it!

Hugs

Jacqueline
__________________
Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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Old 05-03-2013, 04:24 PM   #6
BonnieR
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Re: Venting and hopefully someone understands or feels my pain.

My mantra has always been "keep the faith". I know it is probably annoying and Pollyanna-ish. But really, what else do we have but the hope that things will be brighter down the road. And the assurance of others that it will happen. You are still in early days, not yet a year behind you. Perfectly entitled to be pissed off and mad as a wet hen( I love that term!). But it is sort of like carrying a resentment. Who does all that anger hurt? I'm glad you are unloading it here I hope you have a group or therapist you can vent to I just want to tell you that it is not going to always be this way. You will make peace with the situation as it levels off and life will be worth living. You won't be thinking of cancer every waking minute Even if you are not religious, try asking a higher power for relief. Just ask
And 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 05-03-2013, 05:41 PM   #7
Debbie L.
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Re: Venting and hopefully someone understands or feels my pain.

Linn, reading your post I hear you alternate between saying the truth about what sucks, and then saying "but I should be, I want to be -- positive, grateful, wise, whatever".

So. I agree with Jacqueline. This time of the treatment continuum does have a lot of sucky parts. We hear you. Most of us nod our heads to some if not all of your frustrations, disappointments, impatiences, and angers. You've been thru a lot, you've experienced great losses. Try to be gentle and patient with yourself.

I think it's enough to expect that eventually you will work thru this and find some of the things you hope for, at least some of the time -- gratitude, peace, etc.

But right now, you're being awfully hard on yourself, as if you think that you should be magically turned into this new kind of person who has had her life seriously altered but (waving magic wand) -- poof -- has emerged triumphant. Well it just doesn't work that way (alas). Each person does it a little differently but no one does in "poof" fashion. There will be steps forward but also steps back. I remember that during this turbulent time, I coined the phrase "go with the torrent", because although I'd always loved the phrase "go with the flow", it just didn't capture what was happening with me well enough.

Sending lots of good thoughts, and hoping that you can find a way to work thru this, and be gentle with yourself.

Debbie Laxague
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Old 05-03-2013, 05:58 PM   #8
europa
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Re: Venting and hopefully someone understands or feels my pain.

We all have our moments. I am told by so many that I inspire them, and I may. But I know that behind my closed doors I have had some serious boohoo moments, moments of despair, sadness, anger and I even wanted to throw the towel in a couple of times and said "God, take me now". But those moments get further and further apart as you go through the journey. I had the help of a weekly therapy appointment. I don't know how anyone can go through this without therapy...honestly. I still see her to this day every two weeks because, yes, I still get moments. I think I always will. It's just part of the crap that is breast cancer.
Losing my hair was pretty harsh for me. I was known for my long thick red curly locks. I had a mane. But for me, it was all about living right now. I too sat and watched people go about their business and felt like my life was on hold. But you do not lose your membership of being a human being because you have cancer. The day that I stopped feeling this way was the day that a young healthy woman was killed in my area. She was younger than me and left behind twin boys that were not much older than my son. She didn't have cancer, she was totally healthy and just like that she was gone. So I made a decision that day to live fully until my day comes. I hope you can do the same.
The glorious thing about having cancer is that you are fully aware of your mortality and therefore live differently than those that are have never had cancer. You enjoy things and moments more than they do. I would trade living like this for anything. I love it. Everyday brings something to absorb.
__________________
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 05-03-2013, 08:48 PM   #9
Jackie07
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Re: Venting and hopefully someone understands or feels my pain.

Linn,

There - you said it! Good for you!
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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
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
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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Old 05-03-2013, 10:14 PM   #10
linn65
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Location: Attica, IN
Posts: 371
Re: Venting and hopefully someone understands or feels my pain.

Europea, isn't it crazy to think, "God take me now" when we do treatment, but I have sure said that to myself! I vented and it feels good to be validated! Maybe I am not as crazy and hopeless as I think at times.....

This cancer is PMS times 10, but on this board I am not alone. #thankfulforthat.

I wish I was Dorothy from the Wizard of Oz, and I could close my eyes, click my ruby red slippers and.........
__________________
myleftlump.wordpress.com - started blogging my
IDC breast cancer
7/2012 diagnosed with multiple solid lesions
7/20/12 biopsy done. ER+ 30 PR -, HER+++,k167 80% Grade 2
9/2012 biopsy on lymph node - showed malignant

9/2012 Pre-adjunctive TCH chemo.

12/6/12 MRI after Pre-adj.
Results: Modest Decrease in size of left breast malignancy As well as the associated satellite lesions and auxiliary Adenopathy compared to prior study. Doctors hoped for better but good response it didn't grow.

12/18/2012 left masectomy with axillary nodes
Size 3.2 CM, Nottingham score 9/9
Grade 3, no evidence of in situ carcinoma
Areas of angiolymphatic are identified
Carcinoma is 0.5 cm from inked deep
Margin of excision
Attached axillary lymph nodes: metastatic
Carcinoma in 6 of 8 nodes.
Size of largest node 1.5 cm
Extracapsular
ER + 73%, PR+2%, HER2+

2/27/13 6 weeks of IMRT radiation finished

2/2013 Started on Tamoxifan 5 years.

8/2013 will take last Herceptin, 17 treatments total every 3 weeks.

BRCA1 & BRAC2 - Negative

August 28, 2013 DIEP flap on the left breast.
February 2014 Nip & Tuck
March 14, 2014 nipple reconstruction and removed port.
August 14, 2014 lump in lymph nodes under arm and above clavicle. Stage IV
August 28, 2014 herceptin And projeta starting and port put back in.

3/18/15 stopped arimidex.
3/18/15 progression....Tdm1
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Old 05-04-2013, 08:11 PM   #11
Pray
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Re: Venting and hopefully someone understands or feels my pain.

Just today I went from 225mg of venlafaxine to 150. I went up to 225 for my hot flashes but was first started on it for depression. The depression is gone. (I think) It totally did a number on my hotflashes for many months and now their back. So I'm being weened off.

At my hospital there is a program called Caring and Sharing for breast cancer patients. They have a lot of all free programs for support, hair, makeup, radiation, chemotherapy, how to move on, how to cope, Girls night out for moms and daughters, how to shop, Stay fit you name it they have it! I pray you will find something similar. This web site is awesome! Still face to face and sharing stores, joy and tears, embraces everyone needs this. My friend you are in my prayers and your family.
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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