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Old 09-26-2011, 06:18 PM   #1
YellowTail
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Grateful

Hello, I am so grateful to have found this BC support outlet. Tomorrow I began phase 2 of my chemo sessions; I must say I have been very challenged this week to see past some of the negative information and side effects of the Taxol medication. NOW I am NOT. I spent the day with a great friend, did a Rieki session followed by a yoga class and I found this organization through speaking with a wonderful resourceful women at WellSpring Niagara. She referred me to call the 1-888 line which I did and was instantly connected with another HER2 survivour who made a definite positive impact. I then found the stories excellent and began to smile and not be anxious about my session tomorrow. So thank you, thank you, thank you everyone.

I found my lump May 8 2011 on my own, my family doctor is hard to get into so I went to a walk-in clinic and proceeded to chart my course from there. I tried to make an appointment for a mam and ultrasound within my community May 9 but the wait was 1-month, so not happening. I called another breast screening clinic 40-mins away and they had me booked the next day May 10. As a result of the mam and ultrasound they booked I guided biopsy May 25. June 3 I went back to the Walk-in Clinic to get my results as my fam doc was on holidays, and he was not happy that I went to a walk-in, that was some conversation about me being my own advocate and that he needs to work more that 14 hours a week. All said and done the page has been turned and I have a new family doc. So June 3 I find out I do indeed have breast cancer-it was like a white fluffy cloud transported me into warrior 3, I called the Juravinski Cancer Centre in Hamilton (simply because I recalled the nurse saying they were directly connected to the centre and had a fabulous female oncologist. So that is all I had, I looked on line called the new patients line, introduced myself was given an appointment with the oncologist consult June 10, left that appointment feeling very confident with our choices and had the lumpectomy on my right breast with a sentinel node removal on June 30. After the recovery period of 3.5 weeks I had my meeting to with the onc. surgeon to discuss the path report, we were to meet with the onc medical Chief of the Juravinski in about two weeks so that is what we thought, however as we were leaving the onc. surgeon ran down the hall calling my name and shouted that the Chief would see me now! Wow we did an about face and proceeded to meet with him, that now means we are so ahead of schedule had I waited in my own home town, again grateful I was listening to the nurse and advocating for my own health. So we met, chatted-looked at stats, chatted more thought and began my first chemo of AC on August. 2nd.

Looking back I can say I kept waiting for the train to hit me, I had some fatigue that compounded, nothing unbearable. My 3-session was the most exhausting but I think that had to do with my hair falling out and having the PORT put in. For my 4th and final AC I did Reiki twice, spoke with a life coach had my mom come and stay with me, had a girls movie night and the fatigue was not as hard on me as the third round.

I believe the support of my family/friends and positive energy made the first 4 much more tolerable.

And now the next 4-sessions of Taxol mixed with Herceptin combined for two of the Taxol treatments I as back in Warrior mode and so very thankful that this support forum for HER2 is available, so thankful for all of your shared experiences.

If there are any other tips that worked for you during this phase I am looking forward to reading more. One book I read was Just Get Me Through This - I highly recommend it!

Question? has any one done acupuncture for the neoropathy? My onc team said to go ahead with it. Any thoughts?

Namaste
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Old 09-26-2011, 09:35 PM   #2
3twins
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Re: Grateful

Yellowtail,
Amazing story! And, good for you for having the clarity and strength to take charge of your health. I'm sorry you have to be here but if you must, it's a great place for information and inspiration.
I didn't suffer from neuropathy so I couldn't tell you if acupuncture helps, but I'm certain others will chime in soon.
Keep strong...you're close to the finish line with your treatments!
3twins
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DX 5/17/10 IDC & DCIS
BMX 6/3/10-Stage 1, 0/2 nodes
ER+/PR-, Her2+
Chemo 7/8/10-10/21/10
FEC X 3, T X 3, Herceptin weekly for 9wks
Start Arimidex for 5 yrs-11/22/10
12/16/10 NED!!!!!
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Old 09-30-2011, 04:04 PM   #3
NEDenise
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Re: Grateful

Marlene,
I've only had 2 Reiki sessions but...WOW! I admit, I was a skeptic at first, but no more. What a peaceful, empowering experience.

Haven't tried acupuncture (I'd only be able to do it for one hand anyway...can't puncture the arm without lymph nodes)...but I'd be interested to hear if anyone else has. Won't help with my hands, but my feet might love it!

Till then, Neurontin, and Tylenol will have to do. Honestly, mine isn't so bad. I consider it a small price to pay for being alive and staying that way (God willing!)
Be well! Stay strong!
Denise
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1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
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Old 09-30-2011, 04:24 PM   #4
CoolBreeze
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Re: Grateful

I guess I should knock wood, but I haven't found any chemos too difficult. I did six rounds of caboplatin and taxotere, then weekly taxol, than navelbine with herceptin all along. I've not had any terrible side effects and I go to work every day.

I do believe that drinking lots of water helps with side effects. I drink about 64 ounces a day. L-Glutamine is excellent for neuropathy. Take it the day before, the day of, and a few days after chemo. I just dissolve a couple of tablespoons in water three times a day and I haven't had neuropathy since an initial bout, which went away
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08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative

10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.

5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.

I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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Old 09-30-2011, 05:41 PM   #5
YellowTail
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Re: Grateful

Good evening, the Rieki Sessions are fabulous I have one a week and do much of my own hand healing and meditation to settle my mind and body before going to bed. When I came across the L-Glutamine I discussed it with my onc and he said it was ok to take, so I started taking it even before I started the Taxol and to this point I have had no neuropathy, thank goodness. Feeling much better tonight and have not had any Tylenol since this afternoon let's hope the little aches stay little and tolerable. I agree the few side effects I have had to date are certainly not what I had expected and am very grateful Have a good night ladies, Namaste
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Old 10-04-2011, 05:09 AM   #6
Bunty
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Re: Grateful

Hi YellowTail
I've had quite a lot of chemo over the years (with quite a few years in between the different cycles), and have managed quite well after the dosage settles at the right level for my body. I have acupuncture every week when I'm on chemo, as I believe it keeps my circulation in good condition, and it 'cools' the system. A bit of yin and yang action! Even when I'm not having chemo, I often like to have acupuncture to keep my system in good balance.

Make sure to let the practitioner know that you have breast cancer, as they will avoid putting any needles in that side of your body's arm or hand.

All the best
Marie
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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 10-07-2011, 12:35 PM   #7
YellowTail
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Re: Grateful

Thanks for sharing your experiences with the acupuncture I have not done this yet however I hope to in the near future.
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Old 10-07-2011, 10:24 PM   #8
ElaineM
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Wink Re: Grateful

You are doing a great job being your own advocate.
I don't know anything about acupuncture for neuropathy, but I get acupuncture once in awhile. I think it is helpful.
You live in a nice area of Canada. I visited your area by train when I was staying with my aunt in Toronto.
Take good care of yourself.
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Old 10-08-2011, 01:19 PM   #9
chrisy
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Re: Grateful

Very impressive!!! Good for you, sticking up for yourself and finding the support you needed.
I Did a lot of qigong plus reiki-like sessions when I had tch. I felt good all through chemo although towards the end I Sid get fatigued. One thing that helped me a lot was I forced myself to have a date with friends at least once a month. Kept me feeling normal, plus the added benefit if lots of love and laughter.

The other goofy thing we did was watch LOTS of really funny movies! My sister who lives toofar away was in charge of making me laugh and sent many DVDs and funny hunga to read.

Glad you are doing so well. Keep ip the good work!
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June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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