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Topic: CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.

Forum: Growing Our Friendships After Treatment —

For those who have met on Breastcancer.org and want to continue growing their cybersibling friendships beyond cancer.

Posted on: Jul 18, 2015 08:14PM - edited Feb 21, 2016 12:31AM by SlowDeepBreaths

SlowDeepBreaths wrote:

I'm hoping there isn't another thread like this. I did a search and saw one for stage 4, but nothing for everyone else. My very special friend on BCO (Tomboy), and I have talked about a Crazy Town thread for awhile now. I know she will be happy I finally took the bull by the horns!!

I wrote a little story about visiting Crazy Town last year on my blog, and I received some lovely emails from women all over the world talking about how terrifying those feelings can become. I thought I would share that story with my BCO sisters. I know many of you can relate to the craziness of worrying about recurrence or progression. I think my experience epitomizes the crazy place our minds can go. I've found when I can laugh at myself, I always feel better.

"My master bath has its own little room for the toilet. The sink, shower and tub are all in the same room. At night when I have to use the bathroom, I always turn on the closet light which is right next to my sink. This way I don't have to turn on all the lights above the sink. They are very bright and there are a lot of them. I do this so the brightness doesn't wake up my DH. Being the OCD person I am, I always wash my hands after using the restroom – even in the middle of the night.

One night last week, I was doing my usual ritual and I caught a glimpse of a big blackish/brown mark on the upper left side of my chest.This thing was huge. I could feel my heart beating out of my chest when I caught a glimpse of it. I'm sure many of you will know what I'm talking about - that feeling of dread.I ran my fingers over it and it felt raised. I couldn't imagine what it could be – it was SO big. I thought, "Oh great, here we go again, now I've got skin cancer." Then I decided to risk waking DH up by turning on the millions of lights above the sink. Then I got a closer look. UNBELIEVABLE!!……it was a piece of chocolate from a cookie I had eaten earlier!!!!! Apparently it had melted into my chest and I went to bed that way. Can you imagine?? Now if that doesn't give you a good laugh, I don't know what will. CRAZY TOWN!!!"

I have many stories since diagnosis. I call it going to Crazy Town. Some of them are funny, others not so much. I usually go there in the middle of the night when everyone is sleeping, and my mind wanders. There are no trains, planes or busses out of Crazy Town in the middle of the night. I also go there at times when I'm waiting on test results. I hope we can all share our Crazy Town stories. Talking about it has helped me to stay on the outskirts of the town. I've been really good about not visiting lately, but this week it's been a real challenge.

If you have tests coming up, or you just have a day where you're worried more than usual, or if you just want to hang out and chat, please stop in to visit. It is my hope we can have some fun here and get each other through on difficult days with humor, kindness and hugs!!

Much love to all,

Beppy ツ

P.S. If you've just been diagnosed, I strongly suggest starting a blog. Whether it be just for yourself, or you'd like to share it with others. It's been a good outlet to get my feelings out as well as a wonderful timeline to refer back to when needed.



Great info about breast cancer and PTSD:

http://www.healthline.com/health-news/cancer-treatment-leaves-survivors-with-ptsd-scars-031215#3


Dx 4/2016, TN mets to lung. VATS left upper lobe wedge resection. "Fall seven times, stand up eight" Japanese Proverb Dx 7/2013, IDC, Left, 1cm, Grade 2, 0/0 nodes, ER-/PR-, HER2+ (FISH) Dx 7/2013, IDC, Left, 1cm, Grade 2, 0/0 nodes, ER-/PR-, HER2- (FISH)
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Aug 16, 2018 09:45PM octogirl wrote:

Hugs to all of you who are waiting and anxious!

I think I mentioned my mammo a few weeks ago was clear. Today I had my last MO visit before I move (and have to find a new one...) and that went well also: all blood work, etc looked good...he wished me good luck and sent me on my way....looking forward to the road trip to get to my new home!

though of course still anxious about hubby: he had his skin biopsy today (finally! I tried to get him to move it up, no luck) but he won't get the results for another week! By that time we will be arriving at our new home...argh...more waiting....

Dx 6/18/2015, IDC, Right, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 7/16/2015 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 9/9/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 12/15/2015 Hormonal Therapy 1/15/2016 Arimidex (anastrozole) Hormonal Therapy 4/8/2016 Femara (letrozole)
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Aug 16, 2018 11:55PM ChiSandy wrote:

Bob had his mole removed today--the dermaplastic surgeon said it was either a senile keratosis or compound nevus--but I dunno, as it was brownish black with a bit of red along the top border. He humored me and sent it off to path. We shall see.

Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 9/23/2015 Lumpectomy: Right Radiation Therapy 11/2/2015 3DCRT: Breast Hormonal Therapy 12/31/2015 Femara (letrozole)
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Aug 22, 2018 11:38AM proudtospin wrote:

hi all, heading to onc this pm, she has the results of my new pet scan, hoping to find out while I have pain i my upper back area, hoping it is because i over did junk at gym since recent tests have all showed improvement

Staying positive

iris Dx 6/2008, DCIS, Stage 0, ER+ Dx 2/2017, Left, Stage IV, metastasized to bone/liver, Grade 3, 1/1 nodes, ER+, HER2+
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Aug 22, 2018 07:12PM proudtospin wrote:

welsaw my on my pet is mixed, my meds have worked great to clear my liver but my bones not so good so i get to add a new med.......how fun! This will be a weekly infusion, bummetsl

iris Dx 6/2008, DCIS, Stage 0, ER+ Dx 2/2017, Left, Stage IV, metastasized to bone/liver, Grade 3, 1/1 nodes, ER+, HER2+
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Aug 22, 2018 10:35PM Lucy55 wrote:

Iris ..great news about your liver !!!! Hope the new meds work quickly on your bones ..

Had my annual mammogram /ultrasound and blood work this week ..all good ..always a relief to have them over and done with.

Its been a very stressful week ..my 5 year old grandson ( the one who was so sick last year ) has been in ICU in hospital with pneumonia ..thank goodness he has turned the corner , and they moved him today into an ordinary ward in the hospital today ...It's been such an awful worry ..

Sandy .. I hope Bob's results are good ?!

Hugs to all xx

Dx 8/27/2014, IDC, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Hormonal Therapy 9/15/2014
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Aug 23, 2018 12:04AM ChiSandy wrote:

With Bob's skin path, no news is good news, I guess. The dermoplastic surgeon wasn't even going to send the lesion for biopsy, but he & Bob agreed to humor me.

Finished my root canal today...but started one on the adjacent incisor (the one my DDS & perio had thought was the problem, but the endo said the cuspid was abscessed and the canal so sclerosed it was barely visible on X-ray). The pain, once the anesthesia wore off, was a little less than after the first session for the first tooth.

Then it was off to the orthopedic surgeon for followup after L hand/wrist/arm surgery and X-rays of both arms (R radius had hairline fractures at each end). Turns out my R elbow & forearm pain is tendinitis and should go away with PT. As for the L, I have been told to wean myself off the EXOS cast-brace as much as I can tolerate. (I might still wear a brace for sleep so I don't do anything to reinjure myself while unconscious--which was how I aggravated my TFCC tear in the first place). Still very stiff & sore--swelling between palm knuckles, limited range of motion. Can play some dulcimer, but very, very little guitar. PT/OT starts Monday. Personal goals: to be able to make guitar chords and fasten a bra behind my back instead of having to step in and pull it up (in order to do that, I have to lengthen the straps which then fall down all day).

Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 9/23/2015 Lumpectomy: Right Radiation Therapy 11/2/2015 3DCRT: Breast Hormonal Therapy 12/31/2015 Femara (letrozole)
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Aug 23, 2018 01:42AM Molly50 wrote:

((((iris)))) I'm sorry you have to add another medication, good news about your liver. Lucy, I am sorry about your DGS but happy to hear he's out of ICU. Octogirl best wishes on your move and for your DH biopsy. Sandy, you are really going through a lot! I am so sorry. Things are not good here. He's progressing and we had two episodes today. He's not bouncing back. He's so uncomfortable we finally relented to the pain management hospice recommended. I feel like I just took a big step toward letting him go. I'm so sad. Sending love to all of you.

54 years old. Chek2 mutation. Family history of BC. Oncotype Dx 13 Extensive LVI Dx 6/8/2015, IDC, Left, 2cm, Stage IIB, Grade 2, 2/9 nodes, ER+/PR+, HER2- (FISH) Dx 7/29/2015, DCIS, Left, <1cm, Stage 0, Grade 2, ER+/PR+ Surgery 7/29/2015 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Surgery 9/4/2015 Mastectomy: Left; Reconstruction (left): Tissue expander placement Hormonal Therapy 10/13/2015 Arimidex (anastrozole) Radiation Therapy 10/20/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 4/22/2016 Aromasin (exemestane) Surgery 7/22/2016 Prophylactic mastectomy: Right; Reconstruction (right): Tissue expander placement Surgery 3/21/2017 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Aug 23, 2018 06:24AM Lucy55 wrote:

(( Molly )) sending hugs , love and prayers ..I wish there was something I could say that could ease your pain .Just know we are all here for you..

Dx 8/27/2014, IDC, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Hormonal Therapy 9/15/2014
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Aug 23, 2018 10:09AM duckyb1 wrote:

Molly..my heart is broken...Lord..not our children...Please....hugs and prayers....

Ducky Dx 2/15/2011, IDC, Right, 1cm, Grade 1, 0/8 nodes, ER+/PR+, HER2- Radiation Therapy 4/24/2011 Whole-breast: Breast
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Aug 23, 2018 10:10AM duckyb1 wrote:

Lucy...prayers for you and your GS too....

Ducky Dx 2/15/2011, IDC, Right, 1cm, Grade 1, 0/8 nodes, ER+/PR+, HER2- Radiation Therapy 4/24/2011 Whole-breast: Breast
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Aug 23, 2018 10:10AM proudtospin wrote:

Sandy, i know you use peapod? Well this week's delivery was well funky! I ordered a package of boneless pork cutlets but got 7 packages! I checked the invoice and it looks like i was only billed for one! Guess I am eating lots of pork!

iris Dx 6/2008, DCIS, Stage 0, ER+ Dx 2/2017, Left, Stage IV, metastasized to bone/liver, Grade 3, 1/1 nodes, ER+, HER2+
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Aug 23, 2018 10:26AM - edited Aug 23, 2018 10:26AM by Me2018

PET scan results came back looking good. Done with Chemo for now...MX scheduled for Sept 10th. on to the next step.

:)


Dx 1/9/2018, IDC/IBC, Left, Stage IV, Grade 3, 11/20 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 1/17/2018 AC Chemotherapy 4/16/2018 Abraxane (albumin-bound or nab-paclitaxel) Surgery 9/9/2018 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Radiation Therapy 10/3/2018 Whole-breast: Breast, Lymph nodes Hormonal Therapy 10/9/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Surgery 1/21/2019 Prophylactic ovary removal Hormonal Therapy 3/9/2019 Femara (letrozole) Targeted Therapy 3/9/2019 Ibrance (palbociclib)
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Aug 23, 2018 10:57AM octogirl wrote:

Quick check in from the road: Lucy and Me2018, yay for good results!

((Iris))), sorry for mixed results, hope the new drug does its thing! and big hugs (((Molly))), thinking of you and your family everyday! Sending love and prayers.

Dx 6/18/2015, IDC, Right, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 7/16/2015 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 9/9/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 12/15/2015 Hormonal Therapy 1/15/2016 Arimidex (anastrozole) Hormonal Therapy 4/8/2016 Femara (letrozole)
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Aug 25, 2018 09:36PM queenmomcat wrote:

Molly *and anyone who needs it* I send you what serenity I can

Dx 5/27/2015, DCIS, Left, 1cm, Stage 0, Grade 2, ER+/PR+, HER2- (IHC) Surgery 7/7/2015 Lumpectomy: Left Radiation Therapy 9/1/2015 Whole-breast: Breast Hormonal Therapy 11/1/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 12/10/2015 Reconstruction (left)
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Aug 27, 2018 09:22AM Molly50 wrote:

Lucy, how is your DGS? Octogirl, did your husband get his biopsy results? Sandy, what about Bob? After 4 yes 4 near death episodes on Saturday we had a relatively quiet Sunday. He's a bit better today. He's still marching towards the end but it's a relief to have a day or two of not seeing him turn blue or worse gray.

54 years old. Chek2 mutation. Family history of BC. Oncotype Dx 13 Extensive LVI Dx 6/8/2015, IDC, Left, 2cm, Stage IIB, Grade 2, 2/9 nodes, ER+/PR+, HER2- (FISH) Dx 7/29/2015, DCIS, Left, <1cm, Stage 0, Grade 2, ER+/PR+ Surgery 7/29/2015 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Surgery 9/4/2015 Mastectomy: Left; Reconstruction (left): Tissue expander placement Hormonal Therapy 10/13/2015 Arimidex (anastrozole) Radiation Therapy 10/20/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 4/22/2016 Aromasin (exemestane) Surgery 7/22/2016 Prophylactic mastectomy: Right; Reconstruction (right): Tissue expander placement Surgery 3/21/2017 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Aug 27, 2018 09:44AM proudtospin wrote:

ok crazy issue....after finally getting my hair back after going bald on taxol, seems my hairdresser of 25 years is missing! And i need a cut!

Heading to gym and hope to get a referral!

Defi itely crazy

iris Dx 6/2008, DCIS, Stage 0, ER+ Dx 2/2017, Left, Stage IV, metastasized to bone/liver, Grade 3, 1/1 nodes, ER+, HER2+
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Aug 27, 2018 08:08PM ChiSandy wrote:

Bob's path report is back--it's a sebhorrheic keratosis; the red margin was inflammation. Still gonna nag him to use sunscreen. Molly, may Wyatt's road be smooth & gentle. iris, it's always something...

Had first hand therapy session today--brutally painful, and I have to do the exercises 2-3x/day, as well as keep trying to play guitar, to stretch my tendons back out enough to make full chords. OY.

Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 9/23/2015 Lumpectomy: Right Radiation Therapy 11/2/2015 3DCRT: Breast Hormonal Therapy 12/31/2015 Femara (letrozole)
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Aug 28, 2018 07:25AM M0mmyof2 wrote:

Had a heat rash that caused a yeast problem in a very uncomfortable place. Called my oncologist to see if she could prescribe something to get rid of it. Got it last night and I started the treatment right away.

If you value your freedom, thank a servicemember both serving and retired!
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Aug 28, 2018 12:03PM octogirl wrote:

M0mmy, as Sandy said earlier about something else, it is always something! Hope you heal quickly!

Molly, thanks for asking, hubby got his results: benign! Yay! I can breathe easier now...

I am swamped with my move, going to have to change my profile to reflect my new location...maybe I will have time this weekend!

Love to all the crazies. Octogirl

Dx 6/18/2015, IDC, Right, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 7/16/2015 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 9/9/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 12/15/2015 Hormonal Therapy 1/15/2016 Arimidex (anastrozole) Hormonal Therapy 4/8/2016 Femara (letrozole)
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Aug 28, 2018 07:32PM M0mmyof2 wrote:

Thanks Octo and Sandy. You guys are right, if its not one thing, its another!

If you value your freedom, thank a servicemember both serving and retired!
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Aug 28, 2018 07:35PM ChiSandy wrote:

Ohhh, my wrist & arm! My hand therapist warned me that I will now be able to predict storms coming through even before my barometer does, and she wasn't kidding. The muscles around my ulnar hardware feel like they're being squeezed. Time for some gentle heat, scar massage (I'm no dummy--I'm using a CBD balm for that) and then my (OWWW!) tendon-stretch exercises. Then, play a few chords that I've found challenging; then ice, ice, baby. Lather, rinse, repeat (after dinner & then bedtime). At least no more root canals.

Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 9/23/2015 Lumpectomy: Right Radiation Therapy 11/2/2015 3DCRT: Breast Hormonal Therapy 12/31/2015 Femara (letrozole)
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Aug 28, 2018 07:40PM M0mmyof2 wrote:

Sandy, I know how that goes. My left foot that I had a bunion removed back in '01 lets me know when the weather is going to turn nasty. Sometimes the pain is so bad, I am hobbling for the Tylenol

If you value your freedom, thank a servicemember both serving and retired!
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Aug 29, 2018 12:45PM proudtospin wrote:

well back from infusion for new bone med. Supposed to work on the cancer in bones. I can tell you I am way

Sleep now

iris Dx 6/2008, DCIS, Stage 0, ER+ Dx 2/2017, Left, Stage IV, metastasized to bone/liver, Grade 3, 1/1 nodes, ER+, HER2+
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Aug 29, 2018 06:57PM ChiSandy wrote:

Iris, take it easy, log on to Netflix and call GrubHub. (If the infusion was Zometa, you might get pain deep in the bone marrow--even where there aren't mets--for a couple of days, Claritin helps--get the cheapest generic loratidine).

Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 9/23/2015 Lumpectomy: Right Radiation Therapy 11/2/2015 3DCRT: Breast Hormonal Therapy 12/31/2015 Femara (letrozole)
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Aug 30, 2018 05:40AM Lucy55 wrote:

Molly ..thinking of you and Wyatt every day ..I so wish Beppy were here ..she would now exactly what to say ..(( hugs ))

Iris ..have a good sleep ..hope your new meds is working wonders ...

Octo ..hope you move is going well ...moving is always stressful but fun too :-)

My little grandson is still in hospital with flu and pneumonia..which has now turned into Necrotising Pneumonia..he's been in hospital 2 weeks now ..We are so worried ..going to the hospital to see him tomorrow.

Hugs to all ..

Dx 8/27/2014, IDC, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Hormonal Therapy 9/15/2014
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Aug 30, 2018 09:46AM M0mmyof2 wrote:

Things are starting to go back to normal, at last. Sick of these heat waves.

If you value your freedom, thank a servicemember both serving and retired!
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Aug 30, 2018 11:54AM pennsygal wrote:

Molly, thinking of you and Wyatt. Gentle hugs to you both.

Dx 12/22/2014, IDC, Right, 1cm, Stage IIIA, Grade 3, 2/21 nodes, ER+/PR+, HER2- Chemotherapy 2/9/2015 AC Chemotherapy 5/13/2015 Abraxane (albumin-bound or nab-paclitaxel) Surgery 9/29/2015 Lumpectomy: Right; Lymph node removal: Sentinel, Underarm/Axillary Radiation Therapy 11/17/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 6/30/2016 Femara (letrozole)
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Aug 30, 2018 12:40PM duckyb1 wrote:

Molly, Lucy.....praying for you both for a good outcome.....even thought I am not on a lot, I think of all of you often.....hugs

Ducky Dx 2/15/2011, IDC, Right, 1cm, Grade 1, 0/8 nodes, ER+/PR+, HER2- Radiation Therapy 4/24/2011 Whole-breast: Breast
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Aug 30, 2018 01:54PM rainnyc wrote:

Molly, hoping things might turn around for Wyatt, and that he is comfortable and free from pain.

Lucy, I hope your grandson is able to come home soon.

Hugs to you both.

Dx 4/2015, IDC, ER-/PR-, HER2+ Chemotherapy 5/11/2015 Taxol (paclitaxel) Targeted Therapy 5/11/2015 Herceptin (trastuzumab) Surgery 9/21/2015 Mastectomy: Left, Right Radiation Therapy 10/31/2015 Lymph nodes, Chest wall Targeted Therapy Perjeta (pertuzumab)
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Aug 30, 2018 03:00PM proudtospin wrote:

gee, i just had a follow up call from sloan kettering, since this was a new drug, they were checking, i do appreciate that. Other than tired today all is actually fine. I do not seem to find anyone on line who is taking this med. Hospital said it had been around about 3 years. I told her it felt dif somehow from the infusion i had for taxol. Amazing but she said it is partly as there is a shortage of saline since floodind in puerto rico. But said i should requext a slower infusion. Simple enough. I do like this place



iris Dx 6/2008, DCIS, Stage 0, ER+ Dx 2/2017, Left, Stage IV, metastasized to bone/liver, Grade 3, 1/1 nodes, ER+, HER2+

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