Mayo Clinic Visit Part 3

I decided to get a consultation at the Scottsdale Mayo Clinic after I wasn't really getting answers from my oncologist about some of the side effects I was having and when he didn't know about a couple of recent studies I read about online.  Plus, I have not gotten a second opinion on anything up to this point.  I wanted to know that what we have already done for treatment and what we are doing now were/are the best treatments/tests that can be done.

Getting the appointment went pretty easily.  I had to fill out a couple of questionnaires online and talk to someone in their front office before getting a date and time.  Once I got the appointment I had to get all of my medical records sent since my first mammogram.  It took a lot of phone calls but everything eventually got sent to Scottsdale.  I have also learned my lesson with the insurance company so I worked with them to make sure the visit was covered.

Scottsdale is around a four hour drive from here so I took a day off of work and traveled down the night before my morning appointment.  There is a nice hotel right next door to the clinic and I got in right before 9pm and was able to get a last minute dinner.  I was surprised how nervous I was but yet excited.  My appointment was at 9:30 but I went over early to scout out where I needed to go and to get some breakfast if I had time.  The facilities there are beautiful and everyone was very friendly.  Heck, they even had underground parking so I was out of the hot Arizona sun and someone playing a grand piano in the lobby. 

The oncologist I met with talked to me more in one hour than my current oncologist has in four years.  It was great to have someone explain things to me and answer my questions directly and happily.  I took pages and pages of notes.

One thing she told me that gave me some peace of mind, is that she would have positively had me complete chemo.  She would not have even ordered the oncotype dx testing.  With my age and the size of the tumor, she said that I had to have chemo.  I still have nightmares about my time while on chemo and it was nice to have someone else agree that it had to be done.

I asked about the problems I have had with my legs and feet.  She was able to map out places where I have little or no feeling.  She said that it was neuropathy from chemo and that most people get gradually each year and that I was unusual for both the severity and the length of time I've had my problems.  If it was going to get better, I should be better by now.  She suggested that I try taking Vitamin B6 at 100mg per day to see if it helps.  It won't get better right away but it might in a few months.  She did say I could take Neurotin (sp?) but that it should be as a last result, like if I end up in a wheelchair, because of the negative side effects of it.

She said that she used to have everyone in my situation and on Letrozole get the Zometa infusions I am having every six months.  New studies are showing mixed results though and that if I wanted to stop one thing that we are currently doing, that would be the one.  She suggested getting bone density testing instead and then continue to test each year to keep an eye on it. 

She said that I was at an odd age at my diagnosis and most women are either younger or older when they get breast cancer.  It put me in a strange spot where I could either be treated as a younger or older patient.  Most women in their 30s or younger get genetic testing.  Since my tumor was so big she said that it probably started growing in my mid to early 30s and I could have genetic testing.  She told me to maybe see if my insurance company would cover it and then decide.  I guess it costs around $3,000.  The pros she said is that I would either know if I was genetically inclined to get it or not and if so, I would have my mammograms or MRI tests every six months so we could catch it quickly when it comes back.  Plus, my sisters and niece would know to keep up with their testing.  On a side note, her assistant told me that there is a group of Jewish descent from Eastern Europe/Russia that carry a breast cancer gene.  We believe that our ancestors on my mother's father's side of the family were Russian Jews.

We discussed my big weight gain during chemo.  She said that she sees it a lot with the different drugs patients are given these days.  She said since I am now taking Letrozole and after my hysterectomy it will be extremely hard, but I need to lose weight to lower my chances of recurrence.  She noted that right now I could eat five pretzels a day and still gain weight.  She wasn't too positive on my ability to do it but said that I must. Anything I can do to even lose a little will go a long way.

She said I should drink less than four alcoholic drinks a week and was happy to hear that I am taking an aspirin a day for my heart.  She said that while there is not a lot of study on it since there isn't money to be made, there are signs that taking aspirin could really lower breast cancer recurrence risks.  She also suggested taking an omega 3 fatty acid supplement or flax seed daily for my heart not to lower my chances or recurrence.

She said also that there is a big study going on right now studying if Vitamin D also helps lower breast cancer risk and was pleased that I am taking large weekly doses right now.  She agreed that it will also help with the problems I am having with my hands as I raise my Vitamin D levels in my blood.

I asked about the six more years my oncologist wants me to take Letrozole.  She said that the jury is out on how long to take it.  She said with my young age and size of the tumor that the ten years total of tamoxifin / letrozole may be the way to go.  She said that I should come back to see her in the fall of 2013, which will be the five year mark, to see what the studies are saying.

As far as what testing I should have, she said I should visit my oncologist every six months, unless I have unexplained pain and then I should go in if it lasts more than a couple of weeks.  And then a mammogram every year. 

So, other than the Zometa infusions, she thought we are doing exactly what we should be at this stage.  I am so happy that I made the trip down to the Mayo Clinic and have started to take my health care into my own hands.  I take my Letrozole, aspirin, and Vitamin B6 pills every day and my Vitamin D pill once a week.  I'm starting to walk every night and am trying to lose weight. I had a echocardiogram and stress test this past Monday.  I get the results in a couple of weeks.  Hopefully they come back good and I can relax for a little bit. 

Blood Work Part 2

So, back in May I decided to take my oncologist's advice and go to our local clinic and see what they thought about my side effects and to have my cholesterol checked since I had read that Letrozole can cause a big increase. 

The doctor and I discussed my feet/legs/hands.  She decided that we would do all sorts of blood tests and check for diabetes, thyroid problems, cholesterol, etc. etc. etc.  It was on Memorial Day so they could not draw the blood that day so I came back the next day.  Once again it took three sticks before they could get a needle in and they ended up using that big blue vein (artery?) on the inside of my wrist.  It hurt like the dickens but they got the four big vials that we needed.

Called to get my results the next week and we went over all of the results.  The good news was that almost all of the tests came back great.  My LDL (bad) cholesterol came back high at 133 (should be 99 or lower) but my HDL (good) cholesterol was over 59 which is great.  My C-Reactive Protein reading shoes a  high risk for future cardiovascular event.  And then I had a severe vitamin D deficiency.  She suggested I come in and talk to the doctor.

I right away started an internet search on the vitamin D deficiency and right away found a 2009 study that says that women who had breast cancer and take Letrozole often have a vitamin D deficiency and that it can cause debilitating pain in the hands.  I printed the study and mentally cussed out my oncologist for not letting me know this when I explained the problems I was having.  It had gotten bad enough that I thought I would not be able to do my job in the near future and there was such an easy fix.  I took the printout to my appointment and the doctor I met with had found the same study.  It said that 16 weeks of taking 50,000 IUs of vitamin D would get levels up into the 60s and that most women then no longer had problems with their hands.  I am 12 weeks into take the pills and feel so much better.

As far as the other results, the lady I met with actually has a background as a cardiologist physicians assistant and when she listened to my heart, she heard the heart murmur I have always had.  She recommended that with the murmur and the results above that I should see a cardiologist for an echo cardiogram to see if chemo caused any heart damage or if there are any other problems from Letrozole.  I had my first visit a month or so ago and he could also hear the murmur but he said that it was more of an extra sound instead of a murmur, he did an EKG on that visit and said that it looked good but with heart disease history in my family, history of chemo, the murmur, the high C-reactive Protein reading, and the Letrozole; he suggested I come back for a echo cardiogram and a stress test.  Work, of course, has been super busy since then so I am finally getting in for those tests tomorrow.  I won't hear the results for a couple of weeks but we will at least get a good feel for how my cardiovascular system is working right now and will have a baseline for the future. 

I am very proud of myself for finally taking my health into my own hands.  It has been too easy to just show up when and where they tell me, never ask questions, never argue, and always assume that they are doing everything they can.  Tomorrow night, I let you know how the cardiologist visit goes and will detail what I learned from my visit to the Scottsdale Mayo Clinic.

This is what drives me crazy about cancer treatments

(MedPage Today) -- Breast cancer patients treated with endocrine therapy might improve their odds for survival by starting with tamoxifen and then switching to an aromatase inhibitor, authors of a meta-analysis concluded.

Upfront therapy with aromatase inhibitors have substantial cumulative toxicity, which could explain the lack of overall-survival benefit despite significant improvement in disease-free survival observed with the agents.

Longer-duration use of aromatase inhibitors increased the odds of cardiovascular disease and bone fractures but decreased the odds of venous thrombosis and endometrial cancer.

Overall, five years of treatment with aromatase inhibitors resulted in a trend toward increased mortality compared with five years of tamoxifen or a switching strategy, as reported online in the Journal of the National Cancer Institute.

"Our pooled data are consistent with data reported previously in the individual studies, which showed that compared with tamoxifen, aromatase inhibitors are associated with increased odds of bone fracture and reduced odds of venous thrombosis and endometrial carcinoma," Eitan Amir, MB ChB, of Princess Marget Hospital in Toronto, and coauthors wrote in their discussion.

I take my new little aromatase inhibitor pill every day with the hope and faith that I will get to live a fulfilling long life.  Then I read things like this - "substantial cumulative toxicity" or "lack of overall-survival benefit" or  "longer-duration use of aromatase inhibitors increased the odds of cardiovascular disease and bone fractures" So, while my little pink pill may save me from breast cancer, there is no increased overall survival benefit because it is going to kill me with something else.  The whole article can be read at Aromatase Therapy Timing Key in Breast Cancer Survival on the breastcancer.org site.  Yes, it looks like it is a good thing that I started with taking tamoxifen first and then switching to an AI but notice that the study was done with women taking the two meds for five years.  My oncologist wants me to take the letrozole for eight years.  Eight years.  What is the "substantial cumulative toxicity" of EIGHT YEARS of this stuff.  Heart problems run rampant through my family history while there is no one who has had my type of breast cancer.  Am I shortening my life each morning when I take my pill? Am I lengthening my life each morning when I take my pill? I just don't know and it drives me crazy.