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Old 10-31-2013, 12:21 PM   #21
linn65
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Re: NEDenise Downer Alert!

Denise,

If you can not complain then who can?? This is such a process, and if this is not the place you can complain and whine then that is messed up! I watched a full day of TedX video's on Sunday and took notes to remind myself to have hope, be an inspiration, self-critizing, and the last one I watched was Self Compassion!!

It said basically....How would you treat your friends? How would you treat your family? Do you treat others how you would want to be treated? A lightbulb went off in my head, and I thought it is okay to love myself (self compassion). I treat myself like my own worst enemy in my own head, and I didn't understand it.

Through the world of cancer I worked at more then others ever realize from the people around me and how sick I wasn't, and I beat myself up. Loving yourself in my own twisted head meant being selfish or self indulgent. I am alone in a 3 bedroom house with a basement if I didn't chear people on or show a positive attitude maybe the only people I have wouldn't love me anymore. Another fear of having cancer is everyone will be tired of it all, so I have to be the best, loving, caring person and do NO MATTER WHAT.

NOW after all this I have learned that only "I" will get through this and NOT loving myself gets me absolutely nowhere. It is a new thing I just started to work on after Sunday. It is saying NO, and I have done it twice this week because saying YES is killing me I feel like and if it isn't cancer then it will be "my" own worst enemy.....

Whew, after all that I just said....AGAIN if I didn't have this board to be my total honest self in a po-dunk down and be afraid, understand that you understand, ask questions about what I should do, complain, whine and whatever else anyone wants to call it I don't know what I would do.

Denise you are JUST FINE and we LOVE you!!! And we can cheer when we want too and complain when we want to because this is a safe place for us all!!! And if some don't like it then too bad don't read what you have to say and that is ON THEM!!

I hope this all makes sense because I am supposed to be working, but my brain is now exhausted. I am hear in body but I spent, and I UNDERSTAND what you are feeling, and in a weird way I hope it makes you feel better in your mind, and I am not being pollyanna positive and you are NOT ALONE!

I notice you make sure you tell everyone HAPPY BIRTHDAY!! And I think it is so nice of you to do that....You are kind hearted, loving, and a gentle spirit. I feel like I am starting to know everyone slowly but surely by posts.

Hang in there.....
__________________
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 10-31-2013, 01:45 PM   #22
Andrea Barnett Budin
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Re: NEDenise Downer Alert!

Hi NEDdie,

Well, first the good news. Yay for the big things like no progression.

I know how we get tired of being tired, tired of the horrid symptoms. I hate yours. Off balance for starters. Scary. Shaking hand/arm -- is that a thing a neurologist should look at? Let him figure out what no one else can. Onc says, not his department. Okay then.

I understand the very last thing we want to do is go for ANOTHER doc appointment. And/or ANOTHER test. But sounds to me, this is what you need to do.

Having discovered endocrinology, I don't know how I managed all those years without such a person in my life. Glucose, thyroid, blood tests not one of my many docs ever ever broached! And much was and continues to be discovered. Glucose tolerance test is nauseating, but it reveals stuff you may need to address. Ask a good endocrinologist.

Who tends to our adrenals?! My dghtr has a holistic chiropractor who has cured my other dghtr of vertigo, helped me with hot flashes big time, and helps my dghtr's adrenals get it together.

I know you, Denise, you won't give up. I am so sorry you barely have the energy to cope with each day let alone to schlep around to more docs, but maybe that's what you need.

This isn't your onc's bailiwick, which is great actually. So you need to find who can fix this.

Your symptoms are asking for some attention and they deserve it.

Adrenals shot? I can tell that from here, and I'm not a medical professional. Look what you've been through!!!!!

Surely lots of sleep, which repairs and renews all systems is essential!!!!! GO FOR IT!!!! No guilt involved here!!!!! Your body is screaming out for some gentle loving care. You must give it what it needs, if you want it to be good to you!

Be your own best friend! Be good to YOU! Just as you would to any and all of us!

Steroids are very helpful and/but are full of badness too. I know you're back to weaning, and I think this is a very good thing.

Bless your MRI. See parts of you are working well!

But feeling lousy all the time gets old, especially after allllll this time! You've been more than a trooper, you are a superstar, a Ninja warrior of the highest ilk.

I'm looking up and pleading, Come on. Give this extraordinary lady a break!

Neddie, try believing and rethinking about "weaning" (horrid though it is, and I've heard all your stories and swear I empathize with all my heart!) Think -- WEANING IS KEY TO GETTING BACK TO "YOU"! Or "ME". See yourself being your old healthy, happy, fun and funny self as you wean away! FEEL how it will feel. Remind your body how it feels to be healthy!!!

Do that throughout the day on a regular basis. Seeing it in vivid detail (you have the imagination to fill in the blanks here). Feel exactly how it feels. I know you can remember. Act as if you KNOW it is a done deal, you're on a path, in a process, and you can touch your desired goal NOW.


And please remember -- you can whine here all you want. You know that! And, I might add -- you are NOT weak because you whine. I find it revitalizing. Getting all that's bugging up and out, voicing it to the right people (US!). This is a very healthy and necessary part of being human! I believe in venting wholeheartedly! Don't give it a bad rap, please.

LOVE TO YOU, AS ALWAYS ((((((((((Denise)))))))))...


Andi
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 10-31-2013, 03:27 PM   #23
JillaryJill
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Re: NEDenise Downer Alert!

I am thinking about you Denise.
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DX November 2010
Brain MRI, CT of lung, liver, bone, all clear
Double Mastectomy w/expanders December 1, 2010
ER- PR- Her2+++, grade 3, 12 positive nodes out of 15
Stage IIIc
Started TCH/Chemo December 31, 2010
6 rounds TCH
Herceptin every 3 weeks for a year
33 rounds of TomoTube radiation, to chest wall, neck, skin and lymph area
September, 2011, MRI to lower spine, hips, DX bulging disk, L4 & L5, pain not from cancer
Expanders removed, implants in Dec 1, 2011
Finished Herceptin, December 21, 2011
August 2012, CT of chest and abdomen, all ok
Enrolled in MC1136 Phase I Peptide Vaccine Trial at Mayo Clinic, Rochester, Minnesota
March 2013, First Vaccine
April 2013, 2nd Vaccine
May 2013, 3rd Vaccine
June 2013, 4th Vaccine
July 2013, 5th Vaccine
August 2013, 6th Vaccine Done!
September 2013, Mayo visit, Echo results 68, vaccine did not effect my heart! Blood work normal.
January 31, 2013, Mayo visit, Echo normal
February 23, 2014, Numb lips on right side, Brain MRI, normal!
June, 2015, Finished the trial at Mayo Clinic. Feels good!
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Old 10-31-2013, 03:37 PM   #24
tricia keegan
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Re: NEDenise Downer Alert!

So sorry you feel bad Denise, understandable and just wanted to add my good wishes and (((hugs)))
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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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Old 10-31-2013, 04:26 PM   #25
rhondalea
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Re: NEDenise Downer Alert!

Okay, this sucks. Totally sucks.

Please ask if they're mixing your Avastin with benzyl alcohol. If they are, tell them to stop. (And even if they're not, the benzyl alcohol in Herceptin has a late cumulative effect--with each infusion, I got worse, but several months after I stopped receiving infusions I had a downhill slide into really, really bad).

I had every single one of the symptoms you're describing except for the shaking arms (although I did experience something similar--mostly in my shoulders--albeit intermittently). For some of us, benzyl alcohol is the devil. It has a bad effect on acetylcholine, which leads to a whole host of bad news. See here:

http://www.ncbi.nlm.nih.gov/pubmed/1725728

I couldn't find a list of everything that acetylcholine does, but I did find a list of what anticholingerics (acetylcholine blockers) can do, and you'll find your symptoms in the list here:

http://en.wikipedia.org/wiki/Anticho...ergic_Syndrome

I also have a list of brain effects from the lack of acetylcholine:

"Acetylcholine is the learning and memory neurotransmitter. Symptoms of poor acetylcholine activity include:
Loss of visual and photographic memory
Loss of verbal memory
Memory lapses
Impaired creativity
Diminished comprehension
Difficulty calculating numbers
Difficulty recognizing objects and faces
Slowness of mental responsiveness
Difficulty with directions and spatial orientation"

You already know that my onc and other doctors did nothing, so my endo gave me Aricept (donepezil--and trust me, you want the generic because a 90 day supply of the brand costs about $1,000), and it worked a small miracle for me. What has improved things over and above that is daily lecithin--about 15-30 grams, split into 3 doses (5-10 grams/dose). I was taking it all at once, but I discovered that splitting offered better performance. I started taking brewer's yeast at the same time--it also contains choline along with a bunch of other good things (but not Twinlab--either Bluebonnet or Solgar is best). If you can't get them to prescribe a trial of Aricept, at least try the supplements. Acetyl-l-carnitine will also help, as will citicoline or alpha gpc, but not as much as lecithin.

Your adrenals probably aren't helping the situation any, but be aware that acetylcholine has a role there too.

I hate to see this happen to you, and I demand that you get better. I insist. It's ridiculous that your doctors aren't turning the world on its axis to find a solution, because if anyone deserves a fix, it's you.
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2/6/09 Core needle biopsy: negative; Mammos through 2010: no change
3/30/11 Pea-sized lump in left breast at site of prior biopsy; mammo negative, sonogram not so much
4/14/11 Core needle biopsy: negative for cancer
5/18/11 Excisional biopsy 1.2 cm tumor, LVI, positive margin; ER+60%,PR+20%,HER2/CEP17 5
6/15/11 BMX: Left DCIS & LH; Right ADH; SNB: 2/3 nodes: 1.4 cm and 1 mm; ALND L1&2: 0/10; Stage IIa, Grade 3
7/14/11 CT/Bone scans NED; MUGA 66%
7/19/11 Biweekly dd AC w/Neulasta; done 8/30/11
9/13/11 Transfusion (Hemoglobin 8.6); MUGA 64%
9/20/11 Start Taxol + Herceptin; Taxol done 12/6/2011; continue Herceptin until 9/4/2012
12/27/11 Radiation - 6 weeks; 2/27/2012 - DONE! Yayyyy!
2/29/12 Start Tamoxifen 20 mg/day; continue until 2/28/17
5/16/12 Start five-years Metformin trial
6/19/12 MUGA 61%
8/21/12 Brain MRI NED (head still hurts, brain still fogged)
9/4/12 Herceptin done!
9/6/12 Port out!
7/11/13 Aricept 5mg for cognitive impairment; increased to 10mg as of 8/23/13; back to 5mg 12/2013
5/2014 Add Namenda 7mg
9/2014 Stop Aricept and Namenda; Neuropsychological evaluation
10/24/14 Start cognitive rehabilitation therapy
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Old 10-31-2013, 05:13 PM   #26
Laurel
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Re: NEDenise Downer Alert!

Awww s*^t, Denise, you deserve a good vent now and again! Whine away. We'll listen and commiserate! I wish I had a good suggestion regarding something to pep up your languid adrenals. There are supplements for "adrenal support" that may be beneficial.

It is hard to be the Timex Engerizer Bunny all the time, so don't beat yourself up for feeling discouraged. If I know you tomorrow will dawn brighter because you are an optimist to the core. I will pray.
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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

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

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Old 10-31-2013, 05:36 PM   #27
NEDenise
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Re: NEDenise Downer Alert!

Friends,
Once again, I don't know how I'd cope without you all!
First, Lien - I do feel better after I eat... the effect is almost instantaneous.
Rhonda - my memory, comprehension, and thinking are definitely being affected.

I so appreciate the fact that you all think this has to be figured out quickly "because I deserve it!" Thanks you guys!

So... today I went downtown for my regular Herceptin infusion.
But... for the first time in well over a year, I felt so terrible today that not only couldn't I drive myself... I wasn't even able to walk steadily enough not to fall down. It made me feel sad, sick and dependent. NOT feelings I like.
Fortunately my WONDERFUL husband dropped everything (as he is always willing to do) and became my caretaker.

Apparently, now my malady options are...
~minor heart failure... so no Herceptin for me till we get a new echo next week.
~progression of 'disease' into my cerebro spinal fluid... so no peace of mind for me until after a lumbar puncture next week.
~systemic infection... all kinds of blood cultures sent out today.
~cortisol/adrenal/thyroid problems... more blood and urine samples sent out today.

They've also pushed my restaging CTs up 2 months... just to be sure something isn't going on inside that no one noticed yet.

They actually wanted to admit me today for all these tests! But seriously... tomorrow's Friday. I don't want to be stranded there all weekend because they couldn't get everything done tomorrow. So I declined with the understanding that if the symptoms got worse, or anything new popped up... I'd go right to their ER.

Thanks again everybody! Oh! and Caroline - I'll definitely be calling to pick your brain! Just as soon as I can stay awake and feel human enough to chat.
And, Andi... you know I'm hanging on! It's just so hard when I feel so blechy all the time.
Please keep the prayers storming heaven!
Love,
Denise
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Old 10-31-2013, 05:54 PM   #28
Andrea Barnett Budin
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Re: NEDenise Downer Alert!

Well, I loved Rhonda's post!!! LOTS of great info in there!


Adrenal Support Recommendation Sheet

I read that obviously being stressed out (which you must be physically and psychologically/emotionally) is a cause for burned out adrenals.

AND -- among other factors -- WITHDRAWAL FROM STEROIDS -- can knock out your adrenals!!!!!!!! Hmmm....

Denise, I've been scouring the Internet re adrenal support for you. There are things you can do to help the process of bucking up your adrenals, rather than just waiting for them to heal!!! EMPOWERING, RIGHT???!!!!!!!!!!!!!

WedMD, Dr. Oz, and more... They all seem to agree on a few supplements:

ASTRAGALUS (which I take w/Thymulus) to boost my immune system.
B COMPLEX (which I take B1, B2, B3, B5, B6 and B-12)
C with bioflavonoids
TYROSINE (I take every morning along w/B-12 lozenge -- or I
am a slug...)
MAGNESIUM (which I can't take due to IBS)
CHROMIUM (in my daily regimen)
CARNITINE (yup, I'm on that too, daily)

There are also supplements w/adrenyl extract, which you can read about. I don't use these.

DRINK LOTS OF WATER!
Eat protein, fruits, vegetables. YOU FEEL BETTER AFTER EATING! THIS IS EXCELLENT!!

Walk, even if it's in your house, as much as you possibly can, get the oxygen flowing. But hold on to walls if need be. I've been there. Do NOT fall!!!!

Laughing at Rhonda's list of symptoms. Difficulty calculating numbers -- that's a permanent condition for me!!!

Your ECHO will be fine. If not, I have stuff to help... You are fine. No progression of disease. Forget that. Peace of mind!!!!!!!!! I have you covered.

It's all about your adrenals. And you can start supplements for that NOW. I know your darling husband will be happy to go get them for you. Don't even wait to order from Vitacost.com (best quality and discount prices). Just start getting better.
Remember how loved you are, (((((((( DENISE))))))... !!!!

I absolutely echo Rhonda's words -- "I hate to see this happen to you, and I demand that you get better. I insist. It's ridiculous that your doctors aren't turning the world on its axis to find a solution, because if anyone deserves a fix, it's you."

Andi
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 10-31-2013, 06:07 PM   #29
Andrea Barnett Budin
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Re: NEDenise Downer Alert!

AND -- I forgot -- a few mentions of:

CORDYCEPS MUSHROOM-- used for a number of ailments -- among them -- dizziness and weakness.

Strengthens immune system. Increases energy, enhances stamina, reduces fatigue.

+ bonus -- may shrink tumors!

Go for it, Denise...
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 10-31-2013, 06:44 PM   #30
rhondalea
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Re: NEDenise Downer Alert!

I must've read your sig wrong. Still getting Herceptin? I'd bet anything you'd care to wager that it's the benzyl alcohol.

But the rest...I can only hope that this will push them into taking extraordinary measures to get an answer and get your issues resolved. No one should have to deal with this bs.
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Old 10-31-2013, 07:03 PM   #31
Bunty
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Re: NEDenise Downer Alert!

Oh Denise, you do so deserve to get a break, and I too demand that you get better. I'm just blown away by the incredible information on this site - thanks to all of you. I really think Rhonda could be on to something with the benzyl alcohol.

Love Marie x
__________________
dx Dec 2000 dcis 2.5cm clear sentinel node, ER/PR- Her-2+
lumpectomy, 6 cycles AC, 6 weeks rads
October 2007 three x 2.5cm lung mets. 8 months Taxol, started Herceptin and continue. Significant reduction in lung mets.
June 2011 3cm x 4cm liver tumour. Started Abraxane and continue with Herceptin.
November 2011. Finished with Abraxane, continue with just Herceptin. Liver tumour now reduced to 15mm x 12mm. Lung tumour now 10mm x 0.5mm
February 2012. Scans show everything stable, and brain scan clear.
July 2012. PET/CT scans show I'm in remission - no active cancer!
]Dec CT brain cllear, lungs stable, liver tumour has increased to 20mm. PET scans showed active liver met and active lung thinglet, and possible bone met.
Jan 2013 recommence Abraxane, continue with Herceptin.
June 2013 finish Cycle 6 Abraxane, continue with Herceptin. 30% reduction in liver tumour, everything stable.
December 2013. CA15-3 on rise.
February 2014. PET and CT scans show single liver tumour has increased to 35mm. No other activity.
March 2014. Planned for SBRT for liver met, but couldn't have treatment as tumour too close to bowel. Continue Herceptin.
April 2014. Surgeon advises that I am a good candidate for liver resection, so will have operation early May (after camping holiday). Tumour now 44mm x 29mm.
May 7, 2014. Two liver tumours surgically removed. Third of liver removed, and gall bladder. Am I NED?May 2014. Pathology of tumour shows it's now ER+ (95% staining).
June 2014. CA15-3 has decreased to 18 from a pre-surgery reading of 59!
June 2014. Started Femara, continue with Herceptin.
July 2014. Stop Femara due to severe Osteoporosis. Commence Tamoxifen, continue Herceptin. Waiting to hear if I can have Aclasta infusion.
August 2014. CA15-3 has decreased further to 12 - YAY!
October 2014. Aclasta infusion for Osteoporosis. November 2014, CA15-3 decreased to 11. Scans of liver all clear, something new showing up on lung, but just watching at the moment.
November 2015. Started SBRT on solitary lung met.
November 2015. Bone density scan showed very good improvement so back on Femara - yay!
December 2016. 6 treatments of SBRT radiation on lung. Seems to have had some effect.
June 2016. CA15-3 still stable and low at 9.
June 2016. Started subcutaneous Herceptin replacing infusion.
Jan 2017. LVEF dropped to 46%. Stopped Herceptin.
Feb 2017. Started ACE Inhibitor and BETA Blocker. Still off Herceptin.
Aug 2017. Two new mets - Portacaval lymph node and mediastinal lymph node.
Aug 2017. Blood tests show extremely elevated liver enzyme levels. Many tests to investigate.
Sept 2017. Portacaval lymph node blocking liver bile duct causing liver enzyme and Bilirubin problems.
Oct 2017. 8cm stent inserted into liver bile duct. Procedure caused pancreatitis, and hospitalised for 3 days. Liver enzymes improving rapidly.
Nov 2017. Commenced 4 weeks of radiation on Portacaval lymph node. 5 week break before chemo.
Jan 2018. CT scan. 11 new small liver mets, and new superclavical lymph node med.
Jan 2018. Start Kadcyla. CA15-3 426.
Apr 2018. First scans since starting Kadcyla. All tumours reducing. CA15-3 dropped to 30 from 426.
Dec 2019. Still on Kadcyla, but two small brain mets have been treated in the past month with SRS. CA15-3 stable for 12 months at 11.
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Old 10-31-2013, 07:04 PM   #32
Kkmom
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Re: NEDenise Downer Alert!

Denise,
Hang in there - know you are in my prayers. This is the place to rant and rave. Cyber hugs to you - Pam
__________________
[FONT=Tahoma]Dx 12/14/2012, IDC, 2cm, Stage II, Grade 2, 4/5 nodes, ER+/PR+, HER2+[SIZE=2][COLOR=Blue]
Surgery 12/28/2012 Lumpectomy (Right); Lymph Node Removal: Axillary Lymph Node Dissection (Right)
Chemotherapy 02/06/2013
Herceptin, Carboplatin, Taxotere Started 6 rounds on 02/06/2013 Herceptin
Finished chemo - May 22, 2013
Radiation Therapy 06/12/2013 - 36X External
TM Marker - 13 October, 2013
TM Marker - 15 November, 2013
Annual Mammagram - 3D - Both Breast - CLEAR!!!
Colonscopy - 1st-Clear - November 18, 2013
CT Scan-Results-Clear - November 27, 2013
BC Diagnosis-1 Year - December 14, 2013
TM - holding steady at 15 - December 24, 2014
TM - 24.2 - January 12
Herceptin Treatment - Last One-February 4, 2014!!!
TM - 3.7 - February 4, 2014
MRI & CT - February 21, 2014 - All Clear
NED - and my doctor said - "well, it looks like you are NED - your MRI and CT are clear - Febuary 25, 2014
TM - 18.2 - February 21, 2014
Port Removed - Scheduled for Wed, March 19, 2014
Port Removed - Yeah!!! I feel lighter already!!!
TM - 15.3 - March 25, 2014
Diagnostic 3D Mammogram - Rt Breast - All Clear!!! - Tuesday, May 13, 2014
TM-15.5 - June 25, 2014
Diagnostic 3D Mammogram - Nov. 2014 All Clear!!!
Diagnostic 3D Mammogram-Rt Only-May,2015-All Clear!!!
Diagnostic 3D Mammo-Annual-Nov 2015-Right Clear!!! - Left Breast-found 5 mm CYST. Aspirated - all clear!!
TM - Nov 2015 - 18.2
NED-December, 2015 - 3 Years NED!!!
TM-Feb 2016 - 13.7
TM-June 2016 - 13.3
TM-Oct 2016-10.0
Annual 3D Mammo-Nov, 2016-All Clear!!!

Annual Mammogram - November 2017 - ALL CLEAR. i AM 5 (YES) YEARS OUT!!!

NED - 7 Years Out!! - December, 2019
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Old 10-31-2013, 07:32 PM   #33
Cat
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Re: NEDenise Downer Alert!

Denise, I hope you are thinkng positive about this. I understand my level of "blechy" and imagine yours is 10 x's worse and steroids prob causing all sorts of blechy. I remember I couldn't figure why my family put up with me, I wanted to run away from me. I didn't even like me!!! All sorts of side effects and blechy. Love that word. Lots of prayers for all the good things you deserve. Cry or scream when you need to, you're allowed. 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 10-31-2013, 07:40 PM   #34
LoisLane
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Re: NEDenise Downer Alert!

Denise sending hugs to you and prayers to above. Lois
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August 2008
Lumpectomy left breast
1 tumour 0.9 cm
Her2 negative
lymph nodes negative
venous/lymphatic invasion absent
ER+PR-
Stage I Grade 2
Radiation and Femara

November 2008
Lumpectomy right breast
2 tumours .03 cm and .05 cm and extensive DCIS
.05 tumour Her2+
lymph node negative
venous/lymphatic invasion "indeterminate"
ER+PR low postive
Stage 1 Grade 2

January 2009
bilateral mastectomy
chemotherapy taxotere
Herceptin one year
Femara
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Old 11-01-2013, 02:02 AM   #35
KsGal
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Re: NEDenise Downer Alert!

For goodness sake...whats going on with your body? While I am very, very happy this isn't being caused by cancer, Im am distressed to hear they don't know what is causing your symptoms so they don't know how to treat it. When I was coming off the steroids I slept almost constantly the first few days after reducing the dose, and I felt horrible. So I can definitely see the exhaustion aspect of it. Have they mentioned running any other tests to rule more things out?
You are always being so positive and giving everyone here support, so please know we are all here for you on the days you need support. We want to be here for you.
If it makes you smile even a little, I want you to know that when my balance was off, my kids called me John Wayne. They would say..oh, Mom is walking like John Wayne again.
I definitely pray that God guides your doctors into finding out what is causing this and getting rid of these nasty symptoms ASAP. Big hugs to you.
__________________
Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
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Old 11-01-2013, 02:59 AM   #36
michka
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Re: NEDenise Downer Alert!

Dear Denise, I am sending tons of hugs across the ocean hoping your oncs will figure out real fast now what is happening. The fact that you feel better after eating may give them a small indication. Glucose linked? But what can cause that? Oh how I would like to help you Denise... When I see what your Doctors have planned I feel that they are fighting for you. Hurry Docs! Love, Michka
__________________
08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex

12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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Old 11-01-2013, 05:26 AM   #37
Aussie Girl
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Re: NEDenise Downer Alert!

Dear Denise,

I echo all the good thoughts the others are sending you. I'm sorry you've got a whole lot of tests to face and then the waiting for results, but I am glad you are having them. I know you're the kind of girl who like to know what going on so you choose your own path.
I wish you good sustaining and healing rest, followed by recovery of your energy.
love
Aussie Girl
__________________
31mm Infiltrating duct carcinoma
Grade 3, ER/PR-, HER2+, Neg Sentinel nodes x 5
49mm field of DCIS
17 June '13: Screen detected impalpable mass, Mammogram neg, US.
25 June '13: Diagnosed after multiple biopsies and MRIs
28 June '13: Left lumpectomey
4 July '13: Left Mastectomy
12 August '13: Commenced TCH chemo
Mid December '13 : TCH finished. Herceptin continuing three weekly.
4 August 2014- Herceptin infusions finished.
END OF THERAPY - YAY!
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Old 11-01-2013, 01:25 PM   #38
Rolepaul
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Posts: 388
Re: NEDenise Downer Alert!

The spinal fluid results will be important. If they are positive, then I want you to email me immediately at my personal email. It is not what you want to have happen, but I want to let you know how to handle it if it does.
Rolepaul
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Old 11-01-2013, 01:57 PM   #39
NEDenise
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Re: NEDenise Downer Alert!

Thanks Paul
Could you PM your email again? I can't find it.
Denise
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Old 11-01-2013, 03:55 PM   #40
Mtngrl
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Re: NEDenise Downer Alert!

Dear Denise,

Thank you for updating us. I'm so sorry you're going through all of this. It's scary and awful, and you have every right to whine, complain, kvetch, etc., etc.

I've been thinking about you a lot lately. I hope everything gets sorted out and soon.

All my love,
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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