Research Studies (Metformin and Longitudinal Database)

I have been asked to participate in two research studies being done at Hopkins.

1. Phase III - Randomized Trial of Metformin vs Placebo on Recurrence and Survival of Early Stage Breast Cancer - I stopped this study in April 2013 after I continued to lose weight and was unable to maintain a normal level.  I will no longer be participating in this study.  

This study will help determine whether Metformin can decrease, or affect, the ability of breast cancer cells to grow and whether this drug will work with Tamoxifen to keep cancer from recurring.  Metformin is currently being used to treat diabetes.  This study will help determine if it is better to receive Metformin with usual treatments of breast cancer.  Half the participants in this study will receive Metformin in addition to other treatments, while the other half will receive a placebo.  Previous studies of Metformin have shown that it may decrease the growth of different types of cancer cells.  Meformin lowers the level of insulin, a hormone found in the blood that can be associated with worse breast cancer outcomes.  In addition to taking Metformin, blood samples are also taken at specified times during the study.  This is a double-blind study, meaning that neither myself or my doctors will know if I am taking Metformin or a placebo.

• Common side effects (likely)
• Diarrhea
• Nausea
• Vomiting
• Abdominal bloating
• Gas
• Loss of appetite
• Less likely
• Loss of taste or metallic tastes
• Minorweight loss
• Reduced appetite
• Rarely
• Rash, redness, or itchiness
• Decrease of B12
• Anemia
• Inflammation of the liver

I will start taking either the Metformin or the placebo on 1/11 when I start taking Tamoxifen.

      2. Breast Cancer Program Hormone Therapy Longitudinal Database

This study is being done to learn more about the side effects of breast cancer hormone therapy and if a person's genetic information may help to develop a way to predict the side effects a patient may have and how best to treat them.  It will also help the researchers to look at how the side effects of hormone therapy influences a participants willingness to continue hormonal treatments.

I will be filling out questionnaires periodically that will ask spesific questions about how I am feeling, if I am taking the medication regularly, and any changes to my medication list.  I completed a base line and will fill out one at 3, 6 and 12 months.  This is all computerized, so I will be able to see what has changed and it will highlight things that are out of range.  My oncologist and myself will have access to the results, and they can be used to facilitate conversation about any issues I am having.

Radiation - 100%

I have finished 28 rounds of radiation.  I had my last treatment 12/28 and was able to ring in the new year with 100% of my treatments behind me.  Aside from the inconvenience of daily radiation, I did great and my skin even held up well.  Dr. A was a little disappointed I did not have more of a skin reaction to the radiation.  But, she didn't suggest more treatments, which was great news.  Aside from a slight irritation and what looks and feels like a sunburn, I have not had any major issues.  I expected to experience fatigue, but it has not been bad.  Compared to the extreme fatigue I experienced with chemo, I was able to take this in stride.

We can now move on to filling the expanders, which I took a break from during radiation.  Today I received my first fill of 25 cc's in the right (300 cc's total), and 50 cc's in the left.  The left had been completely deflated prior to starting radiation.  It still has a ways to go before it will match the right side, but she wanted to go easy this time around.  Next week she will fill the left all the way back up.  Because my skin held up so well, it looks like we will be able to continue filling the right.  This is great news since radiation can cause tightening of the skin that would not allow for additional fills.  I have some muscle tightening under my armpit and try and do lots of arm stretches during the day to keep the muscles limber.  This also helps keep the muscle behind the expanders from getting tight, which can cause reconstruction complications.   

Next steps - Continue with the fills and start Tamoxifen

My fills ended shortly after this post and, unfortunately, we were only able to do very minimal filling of the expander for the radiated side.  Looks like a small size B is what we will get.  The surgeon did ask if I was ok if she has to go smaller once we get to surgery, so we will see how things pan out in June.  

Radiation Here I Come

Yesterday we met with the radiation oncologist for my follow-up.  As I said in one of my previous posts, I was really leaning towards not getting radiation.  However, after my appt. we are moving forward with this part of my treatment despite the reconstruction implications.

She had several reasons she wants me to receive radiation treatments.

1.      My tumor was a grade 3 - Cancer cells divide and grow rapidly (even after a mastectomy there are cells left over inside the breast).

2.      I had vascular invasion - This happens when breast cancer cells break into the blood vessels or lymph channels. This increases the risk of the cancer traveling outside the breast or coming back in the future.

3.      I had a deep margin - This means the cancer reached up against the muscle of the chest wall.

4.      The position of my tumor at the 6 o’clock position could have caused the spread of the cancer to my lymph nodes in the chest (between the breasts).  There is no way of removing these nodes.

5.      1 positive node (Most likely, if I only had this and not the above 3, I would not need radiation.)

The plan is to radiate the tumor site, chest wall, lymph nodes between the breasts, above the clavicle, neck, and under my armpit all on the right side.  Because they will be radiating the lymph nodes between the breasts, they have to drain all the fluid out of the left breast so it will not be in the way of the radiation beams.  So, unfortunately, this means I will be a little lopsided for the time being.  It's nice we are getting into colder weather, and I can wear sweaters and scarves.  I am just planning on stuffing the left side of my bra.    

I will have a planning session on Monday to create the path for the radiation and my specific plan.  

Radiation sessions will be daily (5 days a week) for approx. 5-6 weeks.  The tentative start date right now is 11/12.  

  

Expander Fill / Post-Ops

At my post-op appointment Wednesday with the nurse practitioner of plastic surgery, I received my first fill.  They did some filling right after surgery, but this was the first one I was awake for.

First off, she was very happy with my healing so far and said everything looked wonderful.  She said "This looks wonderful.  I know you don't think so, but I do."  She also said she could remove the drains.................................WOO HOO!  I was so excited, because I was ready for those horrible things to be gone forever.  I had no idea how far these tubes were inside me.  They came out right under the armpit and went under the boob and around the top to the breast bone.  The really hard things under my skin that I thought were the expanders were actually the tubes.  Before she pulled out the tubes, she wanted to do the fill.  Here are some videos I found that will help with visuals:  Video 1 & Video 2.  I will say the needle in Video 1 is what they used, but it was actually bigger.  It was like a horse tranquilizer.  She put 50 cc's in each side so I am up to 150 300cc's in the left and 100 225cc's in the right.  They are slowly rounding out some, so hopefully after a few more they will look more like boobs.  They found the port in the expander with a little stud finder.  I didn't feel the needle going in, but I felt a little pressure as the saline was injected.  Now it was time to pull out the drains.  I took a deep breath, and as I blew out in a big puff, she pulled out the tubes.  It didn't hurt, but I could feel them being removed.  It was a strange feeling to experience.  A lot of the tightness I was feeling was relieved with the removal of the tubes.

Now we have the first fill over and done with.  They will continue to do weekly fills as long as they can, depending on how I handle them.  The muscle spasms have been pretty painful.  Sometimes they are just short stabs, and other times they last for hours.  I have some muscle relaxers I take when they don't let up.  They hurt so bad sometimes that I have to stop what I am doing and sit down.  It's almost like a paralyzing pain that hits and takes your breath away.  The drive home was pretty rough and painful.

Thursday I had my post-op with the surgical oncologist.  He also said everything looked wonderful, and I was healing beautifully.  He had the pathology report, and I am happy to report there were no residual cancer cells found in any of the breast tissue removed.  So, I am officially CANCER FREE.  We will never know if the cancer was all removed with my re-excision in March since my margins were only marginally clear, or if the chemo did the trick.  Either way, it's all gone.

Cancer Free.............................sounds strange after all this time.  Instead of saying "I have cancer," I can now say "I had cancer."  Although I was very happy to hear this news, I am so focused on right now, feeling better, and the next steps to full recovery, that it was hard to be really excited.  It is exciting to think about what I have been through and survived up to this point, and how the future steps get smaller as I check things off my cancer treatment/prevention to-do list.    

I am now close to 2 weeks post surgery.  Still taking the pain meds pretty regularly.  Sometimes I can go longer than other times.  I am getting some of the range of motion back in my arms slowly.  Each day gets a little better.  I am still restricted to not lifting anything that weighs more than 10 lbs.  Even if I tried, I would not be able to do it.  Just lifting the laptop pulls, and I can feel the muscles stretching.   

So, my next steps are to continue with the expander fills and then begin radiation.  The big question now is if I decide to go along with doctor recommendations and proceed with radiation.  I have an appointment next week with my radiation oncologist to re-group and go over the next steps.  Part of my hesitation is how radiation will affect my reconstruction.  I would have a 60% chance of future complications with the implant after radiation.  This means I have a high risk that the implant will not be successful in the long term.  Over a 1-2 year period following radiation, the implant could become tight, sore, and lift up towards my shoulder.  If this happens, I would need additional surgeries in an attempt to correct it.  Hopefully following my appointments next week with my oncologist and my radiation oncologist, I will be clear on the risks/benefits and be able to make an informed decision to either proceed with radiation as recommended, or say no.  I have put a lot of faith in my doctors and to go against what is being recommended will be difficult.

Mastectomy Update

Yesterday marked a week since my bilateral mastectomy.  Time to recap the surgery and recovery so far.

We arrived bright and early Monday morning at 5:30 AM.  I got a good night sleep the night before, and I was calm and surprisingly at peace throughout the entire morning.  I met with the anesthesiologists, surgeons, nurses, and signed several consent forms.  I walked into the OR at 7:30 AM.  Kind of strange being in the room fully awake.  I must have looked a little fearful, because shortly after I laid down and the nurses were all busy hooking me up to stuff, my Surgical Oncologist came over and held my hand until I fell asleep.  Before I knew it, I was waking up in recovery.  I was extremely sleepy and felt no pain.  Not long after, Steve came in.  I was in recovery for a few hours.  Steve was in and out between the waiting room and the recovery.  I think I slept for most of the time.  I had to go potty, and the nurses gave me the options of trying to get up or the bedpan.  Of course I said enthusiastically, I think I can get up.  Yeah, not the best idea.  I made it to the foot of the bed before I saw the passing out oras.  I had Steve and three other nurses holding me up until I could sit back on the bed.  I broke out in a sweat, and I was back in bed with ice packets in a few seconds.  Guess the bedpan would have been the better choice.  Because of this instance and the fact I have passing out in my medical history, I had a sign on my door that said Risk of Falling, and in case that was not clear, there was picture of a person falling.

It didn't take long for the pain to set in, and I will say it was pretty intense.  Feels like a burning, stabbing feeling in my chest.  It was so hard to get into a comfortable position.  I was pretty much always propped up with tons of pillows.  It hurt when I moved, breathed, pretty much all the time.  The expanders are hard and very uncomfortable.  The first thing I did once I was awake and in recovery, was take a peek under my hospital gown.  Steve was there and said, "Are you sure you want to do that now?"  I figured, let's just get it over with.  They were all bandaged up, but I could see the results.  They look nothing like breasts, more like saucers.  They are flat lumps, swollen and bruised.  I know it's going to be awhile before they look and feel like breasts, so aside from the pain I feel, I am a bit detached from them.  I don't feel sad about losing them, but it is hard to look at them.  I have become very open to sharing them, however.  Pretty much everyone who visits are offered a peek at them.  I have tried to be open and honest throughout all of this, and hiding it just makes it worse for me.  They were able to put 100  250 cc's in the left and 50 175 cc's in the right.  Eventually, they will match up, and at this point, they don't even look like breasts so it does not really matter.

The drains are pretty scary looking.  They come out from under my armpits.  I feel like a science project.  I will be so excited to get these out (hopefully tomorrow).  Steve learned how to clean and dump them, a task he has been handling quite well.  I will spare more details on the drains.  They are gross, uncomfortable, and you can google them.

I was only in the hospital for one night.  I was given the option to stay an extra day, which I should have done since I was back in the ER the next day (see previous post).  I decided to go home.  It was actually harder to get pain meds when I needed them in the hospital.  The nurses were busy, and I would buzz when I was at the 4 hour mark.  Sometimes it would take another 30min before they made it in.  I figured it would be easier at home.

I am extremely limited in everything I do.  Steve pretty much did every little thing for me aside from feeding me and wiping me after the bathroom.  I said it's like he had another kid to take care of.  Instead of feedings every 4 hours, we had pain medicine administered every 4 hours.  I think showering together might become a routine for us until my arms are more reaching, although not the showers most couples have.  Steve is a trooper through it all.  I get frustrated, he gets frustrated back, but we are making it work.  This part of my treatment journey might get him husband of the year.

The first week went by and I have a hard time remembering the day-to-day.  That's what being in a pain killer induced stupor 24/7 will do.  It's pretty much a blur, and the days run together.  We have slowly cut back on the meds so it's not as bad but still fuzzy during peek med time.

A week later, I am able to do most things, but it sometimes takes me a long time.  I am still very limited since I can't raise my arm high, but slowly and surely it is getting better.  I am still in a lot of pain, and I take meds pretty regularly.  I pretty much have no energy and am really not up and about much.  I have lots of care from my family.  We came to my parents last Friday.  Charlotte and I are being well cared for.  With my sister and her three kids visiting, Charlotte is getting lots and lots of attention and endless playtime.     

I have lots of doctors appointments lined up for this week and next.  I will keep the blog as updated as I can.  Thanks for everything!!!!!

Here are a few pics to help show what's happening.