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Re: Hey, Champions (You, Who Beat The Odds)
I totally agree what Paul said but would like to add my 2 cents:
1. Take it easy - Relax, relax and try to relax. Anxiety and depression are damaging
2. Don't overdo - Moderate excercise is good but no need to exhaust ourselves physically to show we can fight the big "C"
3. Healthier diet ( more fresh veggies and fruits ), supplements to build immune system to overcome the harsh side effects from chemo
4. Give complimentary healing method a shot -When i was on traditonal Chinese herbal medicine for 3 months from Nov 2011 to April 2013, my CA27.29 kept dropping. When i was put on tykerb and xeloda, i stopped it and my TM kept going up 2 points per month. My last check up was in November at 34 so i resumed it last month. I also started practicing Guolin Qigong, a well known and established form of Qigong for cancer patients/survivors. To learn the authentic one, you might need a trip to China as not many people practice it here in the US. If you google it online, you will find many live examples of miracle cure from patients that were told to go home and enjoy their last few months. It is no easy committment though- getting up early and practicing at least 2 hours a day. I am only doing 30 mins this month but will gradually add more hours. I am also planning a trip to China next year and stay for 3 weeks just to learn Guolin Qigong.
5. Be a proactive patient - I remember JML mentioned in her recent post of an arrogant young radiologist had less ideas on the treatment options than herself, who have been dealing with this diseases longer than the young doctor's pratice. Unfortunately quite a few oncologists or people work in this field are not equipped with the most recent research results or trials or treatment options. I think it really helps to be in a support group of such- knowledge is power !!!
6. Stay away from people that bother you - If someone makes you upset, stay away from him/her. Don't waste your time on negative mood.
7. Read more positive survivor stories and believe that you will be one of them.
8. Prepare financially if you can- Some drugs like avasin can be prescribed off label for BC but the expense is intimidating. In China where i come from,the 1st line chemo for her2 BC herceptin is not a covered drug and it costs about $50,000 USD for a whole year's infusion. Talking about Tykerb or Perjeta, you can imagine !!
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1/11 age 36 DX
ER/PR-, Her2 +
TCH*6, Herceptin
BMX with immediate recontruction 5/2011 Lattismus Flap- Dx stage 3c 10/23 nodes
9/11 Radiation
3/12 Local recurrence to skin stage IV
Whole body scan CLEAR
4/12 Tykerb & Xeolda Skin mets slowly regressing
8/12 PET & Brain CT Clear
5/13 Skin mets progressing
6/13 PET scan chestwall recurrence in contralateral anxillary,internal mammary and ipsilateral subpectoral nodes
6/13 kadcyla
10/13 whole body scan -clear NED. previously resolved skin rash gone but 3 new lesions. Biopsy confirmed for skin recurrence
11/13 to 02/14 tykerb & herceptin
02/14 add abraxane/gemzar, 2 weeks on 1 week off at reduced dose
05/14 whole body PET clear/ brain CT clear but skin mets are getting worse, ready for new chemo
05/14 navelbine perjeta herceptin
07/14 skin mets progressing red rash worse
08/14 wide local excision with diep flap to close wound. Final path shows 2 positive margins showing inflammatory carcinoma Going back to surgery in 2 weeks
09/01/14 resection- clear margins
3 weeks after 2nd surgery, a new nodular rash found near drain incision with 2 small red spots behind the chest wall biopsy on 10/1. Positive for breast cancer
Radiation 11/2014 with xeloda then weekly cisplatin
11/14 brain MRI clean
12/14 finished 33 radiations burnt and very painful. Bedridden for 1 week
12/14 t current Herceptin and perjeta only
02/15 rash on upper back right side skin mets radiation planned
02/15 staring electron radiation *35
Stopped at 30 due to severe skin burn, resumed 10 days later
05/15 red patches appeared in between previously radiated area, skin mets. Ct and brain Mri clear. Simulation planned, radiation to start after trip to Alaska.
05/24 new spot identified in scar line on previously radiated reconstructed breast- electron on both side chest wall area and scar line
07/15 multiple skin and lung recurrence begin halaven
11/15 cough much better but very tired on halaven and starting to see some new red skin blotches-suspicious
11/15 heading to China for immune therapy
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