Saturday, January 9, 2016

I Am Getting Wiser!

Look what I found! While searching for names for the blog and not wanting to duplicate others- I came across a website called WISER Survivor Project.      

BTW-I changed the name of my blog to "Becoming Wiser Through Breast Cancer and Other Living Things- just to many other blogs with "lessons" or "embracing"

A study called the WISER Survivor project at U of PENN. I wrote to them and then saw that I won't qualified as I am not yet cancer free and I hopeful with not get lymphedema- However I am a little horrified about something when I read the benefits. LOOK at the weight loss group-
They are sending them to Nutrisystems. Could you just die?!?!?!?!

 so I went into Nurtisystem's website and to look at their diabetic and vegetarians options were for dinner and snacks. This is what I found- they are sending women who are NOW Cancer FREE to take in some more toxic unhealthy food ! BUT hey, they will likely lose weight, learn portion control and get to exercise-

I figured out what my number one reason for getting breast cancer is- My obesity.  It is my only real risk factor- All those years of being normal body size helped but the last 6 years I have been over 200 lbs - I am Okay with that actually though. When I went through the Renfrew program, I did get to develop peace about gaining the weight back plus some additional pounds.  I had a severely broken heart for many years and cried myself to sleep many a night. The food kept me from getting depressed again and like I said before Cancer is a far better a thing to experience than depression was



















Study Purpose: Breast cancer is the most common cancer diagnosis among cancer survivors in the U.S.  The primary challenges faced by these women are recurrence and lasting complications of treatment including lymphedema. We know that obesity and sedentary lifestyle further complicate these issues.  Large observational studies have observed reduced breast cancer recurrence among women who are more physically active.  The recently completed PAL trial at the University of Pennsylvania indicated that the frequency of lymphedema events was reduced among women who did weight-lifting with their affected arm compared to women who did not.  Findings from the WISER Trial conducted at the University of Minnesota TREC Center showed that aerobic exercise may reduce the risk of breast cancer because it reduces F2-isoprostanes, a biomarker for breast cancer risk.  We are testing the effects of adding aerobic exercise and/or weight loss to a weight-lifting intervention on lymphedema, risk for breast cancer recurrence and quality of life.  Since previous studies have been conducted in healthy or high risk populations, we do not know if these results will translate to breast cancer survivors.  We hope to find that out in the WISER Survivor study! Come join us on this quest!

What is Lymphedema?

Lymphedema is an accumulation of protein rich fluid that can cause swelling of the arm or torso.  Lymphedema can result from changes to the lymph system after breast cancer treatment.

Study Benefits

How can becoming a WISER Survivor benefit you?

The following are provided to ALL WISER Survivor participants, paid for by the study:
  • Two Custom fitted compression garments.
  • Access to a certified lymphedema specialist for physical therapy if needed.
The clinic visits will provide all participants with valuable information regarding their personal health. Participants will be given the following results at the end of the study:
  • Body composition (including total body fat, lean mass, and bone density)
  • Resting blood pressure
  • Fitness assessments
  • Diet assessments
  • Lymphedema assessment and education
Participants should have a better understanding of their bodies and personal health as a result of clinic visits and various assessments.
Participants in the exercise groups will further benefit from:
  • An in home exercise program – all participants in the exercise groups will receive an at-home set of ‘Power Blocks’ (adjustable dumbbells ) and will be allowed to keep the ‘Power Blocks’ (www.powerblock.com) upon successful completion of study participation.
  • Improved health and psychological well-being if exercising continues after the end of the study.
Participants in the weight loss groups will further benefit from:
  • The Nutrisystem® food at a 75% discount for 24 weeks.
  • Access to a Registered Dietitian and nutrition education.
  • Improved health and psychological well-being if weight loss is maintained after the end of the study.

OH NO! I am allergic- Cocktail Change

I had an exciting morning with our dear Dr. Priya Gor.  Wow. Very bright woman- her mind works a mile a minute. When I was checking out and making arrangements for additional tests etc, I said "she is a RIOT" and the staff person responded  "  that is one word for her". Everyone knows that she knows that she is very bright. She tends to bark orders without full information and expects the staff to kind of know what she means--- like can't you read my mind- I followed her closely and reinterpreted behind her for her staff. They actually were thrilled with me- I walked in there with my FMLA papers completely filled out and all they had to do was put a signed copy away.  I said it looked like they could use a social worker around there. "Oh we have one"- I said where is she? They said she works part time in the administrative offices 2 days a week. She never goes to the chemo infusion sites. She talks to people only on the phone- in my mind, she is not doing  social work and I am sure she is not a MSW either. She is doing patient representative work- to see if people need anything else. She can assess situation and refer them to whatever they need. She is not having a relationship or working as a patient advocate in the clinic setting.  NOT social work to me.

While Dr. Gor and I were in the exam room, I had to say to her, as we are discussing making big changes, that I wanted to summarize what I heard her say as she spoke very fast and used language not entirely familiar to me. She thanked me for trying to slow her down. She almost listened to my summary while she entered information into the computer, but I did not get confirmation that I had it right. But I believe I do. So here it goes.  

She very quickly assessed me and determined that I was allergic to the  “T” in my TC cocktail – I will affectionately refer to the "T" as GIN  {see (1)}----I had broken out in a rash, experienced flushing in my face almost immediately after the infusion,  and slight fever over the weekend- my skin has been getting tighter from the allergic reaction and I was itchy like MAD!   Not so unlike my allergic reaction to Melons when I was a little child....... AND If you read below- this is not usual but not common.   Now I am taking a Prednisone pack to reduce itchy rash etc………. She also felt that my joint bone pain was due to the  "GIN"  in my cocktail and not the Neulasta. (2)   She said the medicine to reduce infection  usually attacks large bones like your Femur and  Sternum.  My pain was in my hips, my knees, my ankles and feet- She says the pain was likely caused by the  "GIN".  Time will tell as she said that there is no way to put less medicine in the machine for next time as it comes pre-measured. I will explore this and will call the drug manufacture over weekend or next week.  Nancy Patterson's healing over the phone really worked cuz I now have such infrequent pain hit- they do come from time to time but not intense at all.

My side effects are: dry mouth, dry skin, diarrhea which has lead to abdominal tenderness., some nauseaness early on, metallic taste in my mouth, joint pain, headaches,  and the insane itching from the allergic reaction

Given that I am allergic and my desire to get this done sooner rather than later, we are trading cocktails.  We am bringing in  "A" to the team. Which I will affectionately call "VODKA" . You know, thinking of this as alcohol really isn't too bad of an analogy- both are toxic to the body. 

There is a  slight trade off in the switch  that is concluded in a head to head study- TC out performed AC - however I am making up for it by doing DDC (Dose Dense Chemotherapy) Read below (1a)

TC out performed AC---  Study results at a median follow-up of 5.5 years reported in 2006 showed that TC improved the disease-free survival rate by an absolute difference of 6% and overall survival by an absolute difference of 3% compared with AC (Jones S et al: JCO 2006;24:5381–5387). At SABCS, Dr. Stephen Jones presented seven-year-follow-up data and reported outcomes in older patients—i.e., women age 65 and over. Dr. Jones said that higher doses of docetaxel were used in the US Oncology Trial and that there may be more synergy between docetaxel and cyclophosphamide. “This study is the test of time. We now have a survival advantage for TC,” he said.} 
NOW FOR ALL YOUR WORRY WARTS!
WHY I will be fine- 
#1- I did have one round of the TC "GIN" cocktail
#2- I will be NOW having dose dense treatment (1a) - You can not do chemo dense treatment with TC
#3- I will no longer get chemo every 3 weeks but ever 2 weeks. My last treatment will be on February 19.
#4- Chemo dense therapy out performs traditional, every 21 days  rounds of chemo (1a)
Unfortunately it comes with  potentially more adverse reactions so my heart will now be closely monitored. In fact tomorrow I am having a MUGA test (2a) at SJRA.
So I will keep all of you posted. Too tired to write any more tonight. Will be working with Selene tomorrow to get title for my blog. She is leaning toward something simple with the word cancer- I am not feeling that generous to cancer and I like the one I used tonight,  "FUN LADY WISDOM" So if you have read this to this point,  please reply for your vote. My dream is to continue to write on the blog even after this experience with cancer is behind me and share my thoughts and hard earned wisdom about my lessons in my life. HECK- maybe one day I will get that book(s) written.  
TITLE Options for BLOG Are:   PLEASE reply for your vote.
  1. Fun Lady's Wisdom  “Lessons from Cancer and other living things”. 
  2. My view given from breast cancer 
  3. Insights behind my cancer diagnosis 
  4. Stepping into breast cancer
  5. Embracing my cancer lessons. 
  6. Lessons in breast cancer

OH Fudge- I forgot to mention that I need a port for my vodka- it cannot be given the way Gin is given- so I am waiting to have my breast surgeon, Dr. Gilliam give me a time for Tuesday the 19th to get that put in. Next infusion: Friday January 22, 2016


(1a) Dose-Dense Chemotherapy (DDC) aims to achieve maximum tumor kill by increasing the rate of chemotherapy delivery, not by increasing dosage (which is the theory behind many stem cell transplant protocols). By administering the same doses of chemotherapy previously given every 3 weeks on an every 2 week schedule instead, the chemotherapy interrupts the rapid growth phase of the tumor cells. Thus, the therapeutic drugs interfere with the Gompertzian curve, hitting the tumor cells at the time when they are just beginning to grow rapidly again. In other words, "hit them while they are down." This model was called the Norton-Simon model, after the researchers who first described it.

You may ask, why we haven't tried this before? The concern has always been that giving chemotherapy more frequently would lead to low white blood counts and infection, a potentially deadly combination in a patient receiving chemotherapy. Through the use of growth factors (NeupogenNeulastaLeukine), we are able to have faster recovery of white blood cells, decreasing the chance of infection. Several DDC studies have shown a higher incidence of anemia (low red blood cell count) and bone pain (likely related to the use of a growth factor) with these regimens, but the DDC regimens also mean a decrease in the length of therapy by 4-6 weeks, which may be appealing to some.
Studies in Breast Cancer
While the theory seems logical, in practice the results have not been so convincing. The first study was done in women with node-positive breast cancer who were receiving chemotherapy with cytoxan, Adriamycin, and taxol. The women who received DDC every two weeks had an overall survival of 92% three years after treatment, versus 90% for the every 3 week regimen. The same result in favor of DDC was found whether Adriamycin and cytoxan were given at the same time or sequentially (one after the other). As for recurrence of their cancer, 82% of women receiving DDC remained cancer-free, compared to 75% of the women on the every three week regimen. Longer follow-up will give additional information in the coming years.
         ANTONIO, Texas — After 10 years, dose-dense dose-intensified chemotherapy continues to offer significantly better disease-free and overall survival than standard chemotherapy for women with breast cancer with axillary node involvement, according to a new study.      Ten-year overall survival rates were higher in women treated with an intensive dose-dense (IDD) regimen of epirubicin, paclitaxel, and cyclophosphamide than in those treated with standard-dose epirubicin and cyclophosphamide with sequential paclitaxel (69% vs 59%; P = .0007).    High Risk for Adverse Events  The survival advantages came at a cost, however; 9 patients (1.3%) in the IDD group developed myelodysplastic syndrome or acute myeloid leukemia, compared with 2 (0.3%) in the standard-dose group. That had a couple of clinicians who were not involved in the study worried.

(2a) MUGA Scan


    Approved by the Cancer.Net Editorial Board, 11/2015

    A multigated acquisition (MUGA) scan creates video images of the lower chambers of the heart that hold blood (called “ventricles”) to check whether they are pumping blood properly. It shows any abnormalities in the size of the ventricles and in the movement of the blood through the heart. Other names for this test include cardiac blood pooling imaging, nuclear heart scan, nuclear ventriculography, and radionuclide ventriculography.
    Some people may need a MUGA scan before chemotherapy to find a pre-existing heart condition. Doctors also use MUGA scans as follow-up care to identify potential long-term heart side effects called late effects. Cancer survivors who may need follow-up MUGA scans include:
    • People who have had radiation therapy to the chest, spine, or upper abdomen
    • People who have had a bone marrow/stem cell transplant or certain types of chemotherapy.
    For these survivors, the test can identify heart-related late effects, which may occur more than five years after treatment. Learn more about late effects of childhood cancer.

    Effects on the heart from drugs used to treat cancer

    Some types of chemotherapy, such as anthracyclines, may damage the heart during cancer treatment. Examples include daunorubicin (Cerubidine, Rubidomycin), doxorubicin (Adriamycin), and epirubicin (Ellence). Other drugs used to treat cancer, such as trastuzumab (Herceptin), can also cause heart problems. Sometimes, heart damage from these drugs can cause congestive heart failure (CHF). CHF occurs when the heart does not pump enough blood to the rest of the body. People with CHF may experience swollen hands and feet, shortness of breath, dizziness, and an irregular heartbeat. Most often, however, the heart damage is mild and only seen on MUGA scans or other heart tests.


    (1) Taxotere®(1) OLD "GIN"  / "T"  Ingredient. 
    Chemocare.com uses generic drug names in all descriptions of drugs. Taxotere is the trade name for docetaxel. In some cases, health care professionals may use the trade name taxotere when referring to the generic drug name docetaxel.
    Infusion-related side effects (symptoms which may occur during the actual treatment) include:
    Allergic reactions (rash, flushing, fever, lowered blood pressure).  Happens rarely, usually occurs in the first or second infusion. 
    How this drug is given:
    • Docetaxel is given through a vein (intravenously, IV)  
    • There is no pill form of docetaxel
    • Premedication with a corticosteroid pill starting a day prior to docetaxel infusion for 3 days is given to reduce the severity of fluid retention and allergic reactions.  Your doctor will prescribe the exact regimen.
    • The amount of docetaxel that you will receive depends on many factors, including your height and weight, your general health or other health problems, and the type of cancer or condition being treated.  Your doctor will determine your dose and schedule.
    • premedication with corticosteroid starting one day before infusion.  You will be monitored closely during the infusion for any signs of allergic reaction.


     (2)  Neulasta® 

    (pegfilgrastim) is a prescription medicine used to help reduce the chance of infection due to a low white blood cell count, in people with certain types of cancer (non-myeloid), who receive anti-cancer medicines (chemotherapy) that can cause fever and low blood cell count.

    (3) NEW "VODKA"/ "A" Ingredient Doxorubicin, called adriamycin, is a chemotherapy drug used to treat many different types of cancer.                            Why is this medicine prescribed?    Doxorubicin is used in combination with other medications to treat certain types of bladder, breast, lung, stomach, and ovarian cancer; Hodgkin's lymphoma (Hodgkin's disease) and non-Hodgkin's lymphoma (cancer that begins in the cells of the immune system); and certain types of leukemia (cancer of the white blood cells), including acute lymphoblastic leukemia (ALL) and acute myeloid leukemia (AML, ANLL). Doxorubicin is also used alone and in combination with other medications to treat certain types of thyroid cancer and certain types of soft tissue or bone sarcomas (cancer that forms in muscles and bones). It is also used to treat neuroblastoma (a cancer that begins in nerve cells and occurs mainly in children) and Wilms' tumor (a type of kidney cancer that occurs in children). Doxorubicin is in a class of medications called anthracyclines. It works by slowing or stopping the growth of cancer cells in your body      How should this medicine be used?     Doxorubicin comes as a solution (liquid) or as a powder to be mixed with liquid to be injected intravenously (into a vein) by a doctor or nurse in a medical facility. It is usually given once every 21 to 28 days. The length of treatment depends on the types of drugs you are taking, how well your body responds to them, and the type of cancer you have.      What special precautions should I follow? Do not take any grapefruit or it by products 
    Less common side effects of doxorubicin--Changes in the way your heart works- Doxorubicin can affect the way the heart works but this is usually temporary. You may have tests to see how well your heart is working before, during and sometimes after treatment.   If you have pain or tightness in your chest, feel breathless or notice changes to your heartbeat at any time during or after treatment, tell a doctor straight away. These symptoms can be caused by other conditions but it’s important to get them checked by a doctor.        Second cancer Rarely doxorubicin can increase the risk of developing a second cancer, usually leukaemia, years later. But the benefits of treatment usually far outweigh this risk. Your doctor can talk to you about this.                                                                                                         How you have doxorubicin -      You have it through a thin, short tube (a cannula) put into a vein in your arm each time you have treatment. Or you may have it through a central line, a portacath, or a PICC line. These are long, plastic tubes that give the drugs directly into a large vein in your chest. You have the tube put in before or during your course of treatment and it stays in place as long as you need it.